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Autism, Agnosia, & Apraxia

Part 1

Happy World Autistic Day!

This month, we’re going to focus on helping people better understand autistic people. If you want to help autistics, if you love an autistic person, keep reading to find out why it’s so important to learn more about autistic minds.

If you saw our slideshow yesterday, (look in comments) there was a map that illustrated how there can be low (hypo-) or disrupted connectivity between certain parts of the Autistic brain and high (hyperconnectivity) to other parts.

All people have areas of strengths and weaknesses, but that can be especially true for Autistic people.

The truth is, there’s often very little room in society for us to use our strengths and our challenges are far too often seen as willful behavior, laziness, or even faking it.

The real laziness comes from all the bad autism information out there that doesn’t actually teach you any nuanced information about autism. Shame on them.

An Autistic person can have such acute hearing that they hear the buzz of electricity in the walls but seem to not notice when you call their name. They can have 20/20 vision but not be able to find that big red ball right in front of them. They might be able to play the piano but can’t write a sentence.

These are processing differences due to those areas of hypo- and hyper-connectivity known as agnosia and apraxia.

Agnosia is when a person’s sensory system works, sometimes better than most people’s, but they have a decreased or impaired ability to interpret specific sensory input quickly or accurately.

They might be able to hear your voice but not process what the words mean. They might be able to feel a feather touch but not know where on their body they were touched.

Apraxia is when a person is able to move, but they have a decreased or impaired ability to engage in intentional movement quickly or accurately. This can be generalized (global) and impact the whole body, or only specific areas.

They might be able to open a cabinet with their left hand but not the right. They can run and jump but not button a shirt. They might be able to see but can’t point their eyes where they want.

It’s very common for people who have one type of apraxia and/or agnosia to have several types.

They can be mild or severe and vary depending on how taxed or dysregulated a person’s sensory systems are– which creates a sort of “traffic jam” in the brain.

When that happens, autistic people are often pushed by parents, teachers, and therapists to try harder. That’s like adding more cars to the traffic jam. Eventually, the meltdown or shutdown with happen.

If you don’t know better, you’re going to cause trauma.

If you’re autistic and no one taught you about these things, you’ve probably felt a lot of shame. If you have akinetopsia or oculomotor apraxia (see slideshow), no amount of practice or willpower was going to make you the basketball player you wanted to be to make your parents proud.

It was not a moral failure that you struggled with driving. You weren’t “stupid” if you couldn’t read a clock or tie a shoe. Your struggle with left and right? Getting dizzy in stores? Tripping up the steps? That awful handwriting or the pain in your hand when you tried?

All of that was just how you’re wired.

This slideshow is just the beginning of a series on apraxia and agnosia (and similar processing disabilities).

Stay tuned and let us know if any of these help you better understand yourself or the autistic people in your life.

Part 2

As promised, here’s part 2 of our Autism, Agnosia, and Apraxia series.

Many people never have their neurological differences identified unless they are acquired later in life, like following a brain injury or when they have a condition like multiple sclerosis.

For people who are born wired differently, especially if they are autistic, their differences are often never identified and are “treated” with behavior interventions.

This can undermine the self esteem and humanity of a person who is trying far harder than most people, but the act of trying harder can actually worsen apraxia and agnosia.

When a non-dominant (hypoconnected) sensory system is overtaxed, sensory dysregulation and anxiety can cause a “traffic jam” or “neurostorm” (colloquial words we use at NeuroClastic to describe how it feels to experience sensory overwhelm).

For some of these, we will make individual posts to discuss them more in depth.

Please let us know in the comments if any of these help you to better understand yourself or someone you know.

Part 3

This is part 3 of our Autism, Agnosia, and Apraxia series. You don’t need to be autistic to experience agnosia or apraxia, though.

Also, you can be autistic and have none of these.

Essentially, agnosias and apraxia happen when there is decreased or disrupted neural connectivity to regions of the brain responsible for specific tasks and/or if those regions are less developed than is typical.

Sometimes, an agnosia is not inherently negative or disruptive. In fact, having high thresholds for certain sensory experiences can make life easier. A person who has very low registration for taste might be able to eat just about anything and be perfectly happy.

Having gender agnosia is disabling only in societies and cultures where there are strict gender binaries, but it is not inherently disabling.

Not being able to assign a binary gender based on superficial traits or to feel gendered is not a disability; however, not meeting gender norms in a cultural context that is highly gendered does result in difficulty socially.

People with anosmia, or an inability to recognize or even register smells, tend to be happier than those with hyperosmia, or people who have a very intense sensitivity with their sense of smell.

People do not have fewer neural resources, they are just distributed differently. People who have less connectivity to some areas of the brain tend to have more connectivity elsewhere.

Unfortunately, there’s not a lot of room in society for those areas of strength that are outside the norm unless they are commodifiable as entertainment or contribute to someone’s ability to do manual labor.

Ultimately, these differences need accommodations as the world is set up to be optimized for those within the typical range of experiences.

What is Neurodivergence and Why Does It Matter So Much?

Kassiane Asasumasu, one of the board members at Foundations for Divergent Minds, coined the term “neurodivergent” and defined it as “a brain that diverges. Autistic people. ADHD people. People with learning disabilities. Epileptic people. People with mental illnesses. People with MS or Parkinsons or apraxia or cerebral palsy or dyspraxia or no specific diagnosis but wonky lateralization or something.”

Asasumasu was very insistent that the term is used as a tool of inclusion, not for gatekeeping or exclusion.

While NeuroClastic mostly centers neurodevelopmental divergence like autism and ADHD, we can’t talk about those neurotypes without talking about sensory processing, dyslexia, apraxia, dyscalculia, etc.

We can’t talk about any of these things without talking about PTSD, addiction, common misdiagnoses, co-occurring mental health and medical conditions, and things that don’t have a diagnosis at all.

We can’t talk about any of that without talking about bigotry, abuse, bullying, the school to prison pipeline, poverty, underemployment, and isolation.

The mainstream information out there on neurodivergence is a circus, often framed in ways that make all difference seem negative and broken. The focus is usually on changing the person instead of giving them accommodations and the supports they need to survive and thrive.

Getting an accurate diagnosis is extremely difficult and depends on how much access you have to quality, modern, affirming diagnosticians— and that’s not possible for most people in the world.

We build community around all people of all neurotypes looking to understand and learn more about the complex and nuanced ways neurodivergence is experienced:

by people in different cultural and racial contexts
by people in different geographic regions
by people of all gender identities
by people at various stages of life
within different social and systemic constructs

Neurodiversity is a concept coined by Judy Singer that simply means that there are naturally occurring differences in the way brains are wired, and that these differences aren’t inferior. They’re just factual because they exist.

We believe that understanding yourself and others within your community through a lens of neurodiversity and learning more about what drives these differences can improve the lives of all people who share this planet.

You’re welcomed to hang out with us if:

you don’t know if you’re autistic or ADHD,
you know you are neither autistic nor ADHD,
you don’t have an official diagnosis,
you don’t have all the right words to use to talk about disability and neurodiversity,
you feel ashamed of your differences,
you feel alone, in danger, abused, or struggling because of your differences, and/or
you don’t want to disclose your neurotype.

Humans are far too complex to be accurately defined, and the longer you’ve been alive, the more complicated you are.

We’re here to help you understand neurodivergence, especially in the context of autism and ADHD, and to build community around information sharing.

The best education you’ll get from this page is in the comments so that you can see all the ways the information we share relates to individuals.

Affirming Neurodivergent Identity and Autonomy

So much of what neurodivergent children hear — from parents, from teachers, from peers, from therapists, from everyone — is negative, controlling, condescending, contradictory…

Sit up straight.
People will think you’re weird.
You’re trying too hard.
You’re not trying.
Your brother never acted like this.
Fix your face.
Watch your tone.
Be still.
That’s immature.
You act too old.
That’s not stylish.
Focus!
You’re too focused on that. Stop obsessing.

And on… and on…

The world can be cruel, and adults want to protect children from that cruelty by keeping their children off the radar of people who are violent in reaction to differences.

Also, they want to protect kids from predators who exploit and take advantage of people who are different.

They want to position kids to have a future full of healthy relationships where they don’t have to rely on others to be supported or where their differences don’t prevent them from accessing opportunities they want.

Often, from that uncertainty and fear, people try so hard to control the future that they drown out the voice of the child, erase their identity, stifle their autonomy, and cause them to feel like they have to defer to everyone around them as a social authority.

You do have to protect children’s safety and teach them how to understand when it’s not the right place and time to be their full and unbridled self — especially if they also have to contend with racism, queerphobia, and other forms of bigotry.

But also, they need to know that you accept them and love them, that you do not have a problem with their differences, and that you are an accomplice to them living their best life.

You can teach them how to know when masking — the kind of masking everyone does — is appropriate and why. Temporary masking is simply a matter of safety, convenience, or respect for others that does not cause a person to erase their identity.

Examples:

Granny is older and cannot remember very well. She might tell you the same joke many times because she does not remember she already told that joke. We show her respect and love by laughing at that joke and not reminding her we’ve already heard it.
We are going to Uncle Joe’s wedding this weekend. It is a very special day for him, and we need to try our best to be quiet and still during the wedding because this time is all about him and Maya who will be your auntie. Let’s talk about how the wedding will be and what we can do if you start to feel overstimulated.

These messages are just two examples that help to contextualize why sometimes we mask within our ability while not making it seem like any natural instincts or ways of existing are inherently wrong, embarrassing, or shameful.

It shows you’re an accomplice, not police or a judge. You’re there to help them regulate their sensory and nervous systems, their behavior, and their emotions, to explore their identity, and to know how they’re different and how to get their needs met.

The graphic below was drawn by our chief communications officer, Kate Jones. Several neurodivergent parents of neurodivergent kids contributed to it. There are a few lines from Hozier songs in there.

Of course, you can’t always affirm every single thought and behavior at all times and all circumstances. We aren’t advocating that you neglect ever giving guidance or correction. But consider which of the graphics below looks most like your approach.

Then do the honest work of addressing which of the neurodivergent people in your life would most associate with you.

If you’re neurodivergent, which one of these is most like your internal thoughts about yourself?

On a black background is a silhouette of a person made out of phrases in many colors that are affirming of a person’s identity, autonomy, and worth, like “I love you as you are,” “You can rebel,” ”You have a right to communication,” and “I’m sorry.”

a similar silhouette on a black background with white text. The comments are all critical and stifling of autonomy, identity, and worth, like, “Why do you always have to be so sensitive,” “Quiet hands,” “Man up,” and “Take a joke.”

Masking, Identity & Codependency

This Is Not my Voice

Rejection Sensitive Dysphoria (RSD) is debilitating and a result of complex trauma.

But RSD cannot be understood without understanding the interplay between masking, identity, and codepency.

When someone experiences a long history of having their needs unmet and their authentic self invalidated, they begin to mask in a way that walls off their access to what we will call the Core Self.

The Core Self is a person’s true identity. If they have become disconnected, or dissociated, from their Core, then they live in masks that respond to the behaviors and moods of people around them.

This is different from masking temporarily for the sake of safety, convenience, or courtesy. A person who pretends to enjoy their grandmother’s 67th retelling of the same story or is extra polite to the mean receptionist at their place of work is masking but still has control and contact with their Core Self.

When a person (especially someone with an invisible disability and/or grew up in abusive or invalidating circumstances) never has an opportunity to interact authentically, they develop an existential dissociation from their Core Self and often fall into patterns of codependence.

Someone exposed to invasive intervention therapies may be even more at risk of these interpersonal patterns and extremely vulnerable to abuse, RSD, suffering, and isolation.

No matter how much a person has lost connection with their Core, though, they can learn to reconnect and live with more autonomy. The process is long and slow, but it’s worth it.

This slideshow and accompanying article are not magic formulas and may not entirely apply to every person. This is simply a tool and a framework to potentially help you to identify patterns that are causing you suffering and a path to reconnection.

For a more detailed exploration, you can read the expanded article here.

We plan to create resources to help with reconnecting to the Core Self and recovering from codependency and RSD.

Image descriptions are available here.

Written by Terra Vance.

Illustrations by Kate Jones of Dissent by Design.

Who Am I?

As promised, we are offering you resources to help you reconnect to your Core Self.

After years of masking, shame, and/or trauma, many people lose connection to their identity.

Yesterday, we published a resource to help you understand the way many people, especially those with disabilities, are forced into a life of denying their own needs, autonomy, and even access to authentic expression.

You can view that above.

We committed to creating resources to help you connect to your Core Self, set boundaries, discover your identity, and move from codependency to interdependence.

Today, we are offering this resource to help you begin your journey to self-knowledge.

Below is a blank image and then some examples from some of our team (with more coming) and friends:

Community coordinator, Sara Waldecker
Chief decolonizing officer, Jude Afolake Olubodun
Consultant on student rights, Mari Cerda
Tiffany Hammond from Fidgets and Fries
And Genesiz (Shi’Quana) from Chronic and Lovely.

There are detailed instructions on how to complete this sheet and think about it in the context of your life, here.

And a printable PDF here.

As you do this sheet, consider what is most important to your sense of self— not your priorities or what you love.

For me (Terra Vance), I love my child more than anything else and being her parent is my top priority; however, being a parent is not a major part of my identity or how I see my Core Self.

I love NeuroClastic, but that’s not a big part of how I see myself. Gender is not really a part of my Core Self or sense of who I am, so I didn’t include it.

Poor is a major part of my identity, and by that I am not referencing my current finances. I mean that I grew up in the poorest part of the country, a part of a culture very unique in the United States. More than being autistic, I think that my most socially impactful differences are a reflection of being the Generational Poor.

Decolonizing is so core to my identity, it is what led me to doing this work and even creating these resources. Assimilation robs people of their sense of identity and makes being compliant with the status quo desirable. It forces people to erase their own culture, desires, opinions, and differences and favors sameness.

For many people, claiming their identity is an act of rebellion, and that’s a beautiful thing.

You can walk with me through the rest of my process in the article linked above.

We know several of your favorite pages plan to post their own examples, and we will link them here for you when they do (so please check back in).

And please tag us if you’re posting about your identity journey.

When completing this resource, keep the following in mind:

You can’t do it “wrong”
Your identity is your perception of yourself, not what others think about you
It may be hard to understand the difference between what is your Core and what your masks are
The dials and sliders represent how dominant certain aspects of your identity are. This is not how much you love those aspects or even how much time you spend on them. It’s how much you see them as defining your Core Self (examples in article).
Your identity can be made of social intersections (race, gender, heritage, [dis]ability, religion), values (justice, nonviolence, compassion), experiences and hobbies (rock climbing, welding, vinyl record collector), relationships (spouse, parent, grandparent), or passions (cooking, art, film).

How to know the difference between your Core Self and your masks:

Do this worksheet expecting to show it to your family.
Do it again expecting to post it on social media.
Do it again expecting to show it to your classmates/work colleagues.
Do it again expecting to show it to your romantic partner or crush (if applicable).
Do it again expecting to show it to the congregation at your place of worship (if applicable).
Now do it again expecting to show it to no one ever.

Compare and Contrast

If you were influenced by who was going to be reading your sheet, it’s likely that you’re masking to an extent that you’ve lost connection with your Core Self and your masks are interacting with others at the existential level.

We would love to hear about your journey and reactions in the comments and if this is helpful to you. We will be publishing more resources in the near future.

From Erasure to Empowerment: Redefining Identity and Community for Autistic People

Autistic masking is a complex and deeply personal experience that is often oversimplified.

Everyone masks behaviors for a number of reasons. We can perform enthusiasm about an ugly sweater from our 95 year old grandmother because we love her and want her to be happy.

We can “lay low” around an unreasonable employer while at work, flying under the radar to avoid having to deal with their difficult personality.

That kind of masking is healthy and a reflection of autonomy. It is choosing to temporarily change or suppress something in order to be more safe, polite, or efficient.

A person does that but still knows who they are and has places to be their true self.

That’s not what people mean when they reference autistic masking.

Autistic masking is more than a brief or inconvenient change or suppression of certain behaviors.

The reality is that autistic masking is a form of erasure of one’s core identity, or what we call the #CoreSelf.

It happens at the conscious and subconscious level, when over time negative interactions condition us to avoid giving people a glimpse into who we are.

We have attempted (often poorly) to assimilate in a way that we adapt to a dominant culture designed to punish and exclude those who are different, often at the expense of accepting tremendous loneliness, sensory suffering, and emotional pain.

We conform for physical, social, and economic safety, adapting to become like a culture that destroys people like us and is at odds with our most passionate values. This causes us to erase ourselves and hate what we have become.

Autistic masking has a destructive impact on the individual’s sense of self and their connection to their identity.

Autistic masking can lead individuals to engage in their own erasure in an effort to distance themselves from negative stereotypes or to fit in with the dominant culture.

It means reinventing yourself as someone who would never accept a person like you, consciously or subconsciously.

Autistic masking often looks like distancing from anything that looks like sensitivity, disability, or weakness to such a degree that person can’t even be honest about how they exist in the world, all while they feel shame for their differences as if they are a moral failure.

When individuals engage in their own erasure, they perpetuate the cycle of harm and contribute to the marginalization and oppression of people like them.

This leads to loss of self knowledge and belonging, a sense of alienation from one’s own community, and the perpetuation of negative stereotypes and prejudice.

It is important to recognize that autistic masking is not always a choice, but rather a survival mechanism in the face of interpersonal and systematic oppression and discrimination. When someone faces multiple types of discrimination, like racism or homophobia, they are at even more risk.

However, it is also important to recognize the negative impact that autistic masking can have on individuals who are forced into an existence that leaves them with only bad choices.

Autistic masking often comes in the form of adopting toxic positivity and toxic industriousness as existential masks.

At this pivotal point in human history, many autistic people are accepting the risk of being themselves openly, forming community around each other, and pushing against the boundaries of the exclusionary status quo.

It took a lot of years to become so lonely and dissociated from our Core Selves, and it will take a lot of years to tackle the shame, imposter syndrome, and unreasonable expectations that have walled us off from our access to our authentic identity.

You can move at the pace that you need and that is safe for you, whether that is diving in headlong or peeling back the layers slowly.

If you feel like no one has ever truly met you, and you have never truly met yourself— that’s identity masking.

You’re in there, though. The real you is the voice asking the question, “Who am I?”

The real You is the person who wants to respond to this post before the masks start telling you that you’re “stupid” or “awkward” or “do not belong” or “are not autistic enough.”

You do not need to be autistic to find this relatable. You might have had to mask in this way for other reasons— oppressive religion, parents who had conditional love and acceptance, bigotry, bullies, toxic masculinity, or a different disability.

You have our blessing to respond to this post as your true and authentic self, autistic or not.

#StopTheShock Shirts

We have a new shirt to help raise awareness about the shock torture of disabled people at Judge Rotenberg Center. Judge Rotenberg Center is a residential facility in Massachusetts that uses extremely painful electroshock as corporal punishment to shape the behaviors of disabled people.

Diagnoses of people currently or previously subjected to shock torture include autism, schizophrenia, psychosis, intellectual disability, non-directed motor movements (moving without intention; tics), mood disorder, epilepsy, traumatic brain injury, and more.

Some people subjected to the GED, currently or historically, have been foster children, sexual and physical abuse survivors, and people born with addiction (due to substance abuse during pregnancy).

This shirt is set for $0.00 profits for our org to bring you the lowest possible price.

Find the link here.

Design by an autistic artist from Nonbinary Star Comics.

Shock Collar vs GED-4

The Judge Rotenberg Center in Canton, Massachusetts, uses an extremely powerful shock device to punish disabled people.

In March of this year, a teen girl in New Jersey escaped her home and ran to a neighbor’s house, looking for help. Relatives had been shocking her with a dog shock collar for four years, plus withholding food and other amenities.

Source: 13-Year-Old N.J. Girl Found with Shock Collar on Her Neck Tells Police Relatives Used It to Carry Out Abuse

Three adult relatives were immediately arrested and charged with, among other things, aggravated assault– a charge which carries a penalty of 5-10 years in prison.

Meanwhile, disabled people at Judge Rotenberg Center are punished with a device that works similarly to a dog shock collar but is much, much stronger.

These devices are legally used and worn 24 hours per day in up to five locations on the body.

Jennifer Msumba tried to escape from Judge Rotenberg Center and the cruelty she faced afterwards was horrifying. She was shocked, then mechanically restrained, isolated, deprived of any access of joy for over two months.

No police intervened. No one is going to prison.

Why not? Because she was autistic?

Source: Escaping The Judge Rotenberg Center

Disabled people do not have as many rights as animals, terrorists, serial killers, or child molesters.

The executive director at Judge Rotenberg Center, Glenda Crookes, is paid over $350,000 a year.

Source: Judge Rotenberg Educational Center Inc.

Tax dollars fund the torture of disabled people at Judge Rotenberg Center, at an average of $290,000 per year.

For US residents: Please visit The Arc of the United States‘s tool for contacting your state representatives. It takes around 30 seconds to send an email. The tool also allows you to call or tweet your representatives.

Link: www.StopTheShock.Today

Additional information: www.JudgeRotenberg.Center

____ Is A Cause For Autism

You probably have been seeing advertisements suggesting that having an autistic child is caused by the use of Tylenol (acetaminophen or paracetamol, depending on your country of origin) or other over-the-counter pain relievers.

We recommend you ignore those. We have heard a new and absurd autism cause every few months from people looking for research money and lawyers looking for reasons to sue.

From coal mining to “refrigerator mothers” to chemtrails to “drunken sperm”— just about anything that one can imagine has been implicated as a possible cause for autism.

Sex with an autistic person or person with genetic markers associated with autism causes autistic babies.

Most of the parents in our collective (hundreds of them) realized they were autistic after having an autistic child.

In fact, most of us have also realized our partners were autistic. It is less noticeable if the differences are not that different in your immediate family.
A non-autistic child stands out in an autistic family.

But there are a lot of reasons an autistic person may experience more pain during pregnancy, so it is reasonable that pain medication like Tylenol may be more frequently used during pregnancy by autistic pregnant people or people with conditions that tend to run in families with autistic people.

Estimates are that more than half of people use acetaminophen (Tylenol is a brand of acetaminophen) during pregnancy. By this logic, Tylenol comes with a larger risk of causing neurotypicality.

Decolonizing Work and Language

The language we use in pursuit of justice is ever-changing — simultaneously a reflection of progress and a continuation of the same.

We propose less of a guidebook about the language that is used and more of a guide for aligning your words with your purpose when trying to decolonize your approach.

Sometimes, using a phrase like BIPOC or BAME is a helpful shorthand to express that a group is diverse, but often, it continues the work of colonization by reducing the majority of people in the world to “non-white.” This still leaves people with an identity defined by whiteness— a social construct.

As we struggle towards mutual liberation, we look into learning how we can support others by reclaiming interdependence and community and leaving behind the myth of independence and meritocracy, and the erasure of assimilation.

The first thing to do is to engage in the radical act of knowing yourself separate from:

your value or “burden” on the economy
your place in social hierarchies that depends on your conformity to social norms
your generic “white/default” or “marginalized” identity
your false binaries: abled or disabled, male or female, Democrat or Republican (or equivalent), your religion/lack of religion, etc.
your relationship to oppression

Once you know who you are, you can begin to form and be in community, settling into roles that extend beyond the struggle to survive in an unhealthy and collapsing empire.

If you don’t know who you are outside of your place in colonized hierarchies, then you won’t know how to truly see and understand others. You won’t know what identity means and you will end up wearing and performing your actual, true identities as costumes— cinematic exhibitions for the scrutiny and commercial consumption of others— rather than as a single aspect of a complex, unique, intersectional existence.

Find and learn from people who share their own experience and do not pressure you to become them in order to be in community with them.

Don’t look at community as an exercise in policing and behavior modification but as a collective that provides healthy ways to engage and learn, that does not penalize you for innate ways of existing, and that gives you permission to heal, grow, and understand without performing allyship by a behavioral formula.

As for which term is best— we can’t answer that. “Best” is subjective and meaningless. We encourage you to engage in thoughtful activism that comes from a place of deep understanding and knowledge. If you don’t know deeply and innately about yourself and others that you’re in community with, it’s best to learn and share from those who do. If you don’t strive for deep knowledge, and deep connection with others, then you will lack the nuance to dismantle the harm that you genuinely want to erase.

Avoiding the pressure to turn your existence into a commercial as a performance artist is a good first step.

This is not a comprehensive guide or a rulebook. It’s food for thought. It’s not right or wrong because that’s a false binary.

Post authors:
Sara Waldecker, community coordinator;
Jude Afolake Olubodun, chief decolonizing officer;
Terra Vance, CEO;
Chaotic Neural, Identity scholar and consultant (page coming soon)

Therapy and Autistic Communication

Hi,

Several people admin this Facebook page, but this is Terra Vance currently. I am the org CEO, a former English teacher, and an autistic parent to an autistic child.

As an org with a reputation for addressing the really difficult topics and tragedies autistics face, we regularly have people (usually the parents of an autistic teen or adult) come to us when they’re dealing with world-shattering circumstances. We don’t provide services as an org, but they don’t know where else to go.

I want to point out a common theme because this is an issue we *all need to tackle as a community*— without blame but also while honoring the seriousness of the situation.

So many times, an autistic teen or adult who had speech or behavior therapy in childhood responds to questions or accusations, immediately, by agreeing with the person interrogating them.

Whether the person has little-to-no reliable speech, or they are the speech-fluent captain of their debate team, those communication skills dissolve instantly in the face of extreme dysregulation.

If you condition autistic people to use *mitigated echolalia so they immediately respond to questions they have not processed, that might become a reflex when they’re older.

*Mitigated echolalia happens when a person echoes what someone else said but might change the tone (from a question to a statement) or the pronouns (from “you” to “I/me”).

For example:

Parent: Do you want juice?
Child repeats: Do I want juice?
Or maybe: You want juice.

Eventually, therapists try to shift the mitigated echolalia to “I want juice.” This is much more like reciprocal [“functional”] speech.

But, the common thread is that in every one of these tragic cases, the autistic person had speech or behavior therapy in early childhood.

Here are some (paraphrased) questions from cases brought to me or the org wherein Autistic people responded with mitigated echolalia that caused them to be arrested, beaten up/nearly killed by bullies, expelled from school, fired, involuntarily placed in a residential facility, and/or even incarcerated.

Did you try to have sex with [a stranger]?
Are you planning a school shooting?
Were you trying to kill yourself?
Did you plagiarize this?
Were you staring at me?
Did you start this fire?
Are you trying to hook up with [name of bully’s girlfriend]?
Do you want me to kick your a**?
Did you pull the fire alarm?

In all of these cases, an autistic person responded before they even processed the question by repeating the question as a statement.

They were so startled and dysregulated they did the automated response that made their therapists and other authority figures happy in childhood— that mitigated echolalia.

And I’m sure you all know how hard it is to convince people that echolalia and other common autistic behaviors are things autistic people do— especially if they have fluent speech most of the time.

A strict prosecutor or judge with no knowledge of autism will think you’re making it up. They won’t buy that autistic people might say a thing they don’t mean.

I can imagine this happens without therapy, too, on a smaller scale. Most autistic people will agree that they often feel pressured to immediately respond and end up saying things that they don’t want to say because it’s not polite to leave a long pause, or it looks like guilt or avoidance.

Do autistic people sometimes verbally consent to things they have not had time to process?

Yes, they do…

Can you see how that can be dangerous?

Some autistic people who haven’t been in many therapies might default to an automatic “no” instead.

Therapeutic interventions are not inherently harmful, but it needs to be considered that the teen or adult version of “I want juice” might be “I was trying to kill myself” or “I started the the fire” or “I want you to kick my a**.”

One helpful tip that happened by accident in my house is my child– with very atypical communication– picked up my habit of saying “my brain is loading.” She now uses that phrase to let me know she’s heard me but is processing before answering.

This way, I know she actually heard me (she doesn’t always) and just needs a minute.

I write this with no intention to shame anyone. Helping people find reliable communication is critically important work.

Autistics can have very complex communication barriers. I only have this insight because I am in the position I’m in.

I am not here to propose solutions, either. I don’t have any other than potentially encouraging people with communication barriers to signal they need time to process instead of trying to shape their communication to script replies.

As a parent, I have used this information to change ways I interact with my child. I’m sharing it with you because this information might save innocent people from a lot of unnecessary pain.

There’s a lot of pressure on autistic kids to meet demands they’re not wired to meet at the same speed as most people. Most autistic adults can tell you horror stories about times they “impulsively” did or said something they would never have done because of pressure to immediately act.

AskingAutistics If you are or suspect you are probably Autistic, have you ever said something that was a script or automatic response that got you in trouble?

Asking anyone: has an Autistic person in your life suffered as a result of saying yes or agreeing as a scripted/automated/conditioned response?

Kindness and Compassion

On Kindness and Compassion:

If you only recently discovered the Autistic community exists, you’re probably learning a lot in a short amount of time.

We’re happy to have you!

We noticed a lot of professionals and service providers are changing their language and approach, and a new mantra has emerged: “kindness and compassion.”

This is way better than compliance, coercion, or shame, but we would like to gently ask you to not make that your foundation.

To be clear, nothing is wrong with kindness or compassion– in circumstances that merit those feelings. But that is not a foundation on which to build your whole approach.

Please don’t make this your mantra 😅. Let’s brainstorm a better one.

So Does TikTok Cause Tourette’s?

Advocates with Tourettes have been under fire for not hiding and for pushing for acceptance, but the mainstream is sounding like the embarrassing grand-uncle who starts every diatribe with “kids these days…”

Yes, watching tics can cause a person with a neurological predisposition to copy tics. Autistic people call this echopraxia or echolalia. If it becomes “stuck,” it’s a “tic” or a “motor loop.”

Tics can be masked with less obvious behaviors, like trichotillomania (pulling out hair), grinding teeth so much they break, or other behaviors that harm the person trying to suppress and hide their movement disability.

Once we become conscious of who we are and the bodies we live in, and we connect to those bodies instead of dissociating from them, it is harder— or impossible— to keep ignoring and harming those bodies.

Tics can cause suffering, but acceptance and awareness can make their lives— all our lives— much easier.

Thousands, or millions, of school suspensions and criminal charges are a result of harmless motor disinhibition being misunderstood as intentional. Often, repeating something a bully says can end in physical abuse or even arrest.

The answer to more people having more obvious tics is not for them to go back into hiding and self harm. The answer is Acceptance.

How To Bond With Your Autistic Child Through Your Special Interests

Parents of autistic children often feel like bad parents. This is because their instincts and what is “normal” often fail to get expected results.

Don’t think of this slideshow as a perfect formula that will always work. Think of it as an opportunity to troubleshoot where your attempts aren’t getting the results you’d like.

Parents, educators, and support workers also feel like who they are gets lost because they are putting in so much effort.

So they try harder. Things get worse. They try harder. Things get even worse.

The good news is the solution is easy. The “trying hard” is likely the culprit. Your child may be offended by the effort.

Just start doing what you love in front of your child, being in your joy, and if they want to join, make it possible. And safe.

The home photos in these images are from my (Terra Vance) & my child’s now-mutual passion: Plants

After we cultivated this passion, we began sharing it with my friends on private social media. They joined in! The plants in these images came from various people who have mutual joy.

From the seashells, toys, planters, & the plants themselves, most of these came from community.

The last photograph in this sideshow is a plant from Elizabeth Vosseller from International Association for Spelling as Communication. My child named this one “Turd” and garnished it with tiny toys (Shopkins) of a potty, toilet paper, hand soap, & spray cleaner. The plant behind it has a vintage elephant & is named Donut Joe after an ancestor who was a professional elephant tamer. The Donut title is a mystery.

Through this, I’ve been able to share about other passions— gemstones and crystals, antiques, ancestral traditions passed down from my grandparents, and more. And I learn so much about my child.

It’s grown to now be a mosaic of lots of people’s love and personalities, connecting my child to others who now have folded our traditions into their own.
Coming from poverty, this kind of community culture of giving from what you have— like found objects, plant cuttings, seeds, canned foods, etc. is Home to me. It’s a beautiful way to build community, autistically.

Image descriptions here.

Title side is white text on a dark green wall of leaves and has the title, “ How to bond with your autistic child through your special interests”

Image on the left of a dark green rubber plant (a live ficus) with a cube of jet, the black stone, in the moss at the base. Image reads: Just be. Don’t ask them to join you. Autistic kids have a very sensitive coercion meter and may also be demand avoidant. This means if they feel it’s a demand, they will decline even if they want to join. Be patient. Wait for them to ask questions or show interest. Don’t try to force interactions beyond answering questions.

A plant in the vagina with the text, Just do what you LOVE in front of your child. Knit, garden, organize, make jewelry, build Lego castles, play Mario, etc. in their vicinity. You have to genuinely LOVE it. Don’t act. Their coercion meter will go off.

Image with a small flower pot and inside surrounding a plant is a toy bunny and three gemstone hearts. It reads: Be factual. Infodump with facts about your special interest. Do not slip up and “should on yourself” or on them. “I should do this better,” or “You should try it.” Image with a couple small pots with small plants that have gemstones in the soil. One has a ceramic set of vintage owl figurines in it. It reads: Be passive. If they seem like they want to try it, put what supplies are needed to the side and let them know they can try if they want. Don't ask them to.

Text boxes in front of a closeup image of dark green leaves. It reads CRITICAL: Narrate out loud what happens and how to fix it if they mess up or get it wrong. Anxiety about getting it wrong will prevent them from trying because other people’s reactions are hard to predict. “If you accidentally get eggshells in the batter, we can use this little fork to pull them out. It’s no big deal if that happens.” Or, “Sometimes the paint gets on your clothes or skin. I have wipes here if that happens. That's easy to fix.”

Image of a tabletop indoor small greenhouse full of tomato and zucchini plants almost too big to fit. It reads Be cool. Don’t use emotions to coerce them into joining you. Don’t thank them for playing with you, don't pout if they decline, don’t cheer and praise them. They will feel like they are being used or you're being inauthentic.

Text box in front of a photo of plants. It reads: The fastest way to undermine and erode an Autistic child’s trust and to teach them to ignore their instincts is to be inauthentic. By creating unnatural scenarios, you will teach the child that they are supposed to comply to manage the happiness of others, not to build authentic, mutually-beneficial relationships.

Image of a flower pot with antique blanc de chine figures of Buddha and Guan Yin inside with the plants. It reads: Be a bridge. Find ways to merge your interest and theirs. “When I plant things, I like to give them a name and toys or decorations. Do you have any ideas?” Image of a tiny flower pot in focus through the leaves of other plants. In the pot is a tiny plant and a little toy orca whale. It reads: Be in community. Share this mutual interest with community.

Image has a picture of a small plant with tiny toys inside the pot: a potty, toilet paper, spray cleaner, and hand soap. Be fun. Merging interests is not about finding a way to combine knitting with train schedules-- though it could be. It is about giving nods to things the other person enjoys, finds funny, or is a sensory joy. You build shared context that grows together forever.

Image has a wavy graph with five points on it. It's titled, A budding journey from solitary to community Point one has a plant illustration and reads: Parent engages in a passion: keeping and propagating plants. Point two has eyes looking curiously with a question mark beside them and reads, Child observes passion and becomes naturally curious. Point three has a houseplant and reads, Parent makes participation optional. Answers questions factually. Point four has a gemstone illustration and reads, Parent ties in other interests: toys and gemstones. Point five has an icon with hands joined in a circle and reads, With consent, shares passion. Community builds automatically.

Thin Slice Judgements And The Different Worlds Autistic People Inhabit

Autistic people have a hard time explaining to the general public exactly what it’s like to be us. What people don’t realize is that we don’t just have things that we can’t do, or that are hard for us, but it’s more like the death of 1000 papercuts.

Thin Slice Judgements are those paper cuts that sometimes end up snowballing to something more akin to being stabbed with a sword.

From being suspected of being on drugs, to having echolalia and tics be interpreted as communication, to being suspected of being a sexual predator or school shooter, or to just giving people a “bad vibe,” thin slice judgments wreck our access community.

Thin slice judgements are a product of automatic processing. People have no idea they’ve even made a judgment. At least they have no idea until they **think** about it consciously. It is as automatic to them as blinking.

Thin slice judgments contribute to racism, sexism, and other forms of bigotry. Basically, the brain has automated stereotypes that are efficient but cause serious harm to anyone at the negative end of a Thin Slice.

Doctors presume drug seeking or malingering. Teachers presume gifted or incapable on first impression– then stick to that bias. Peers see us as “creepy.” Officers see us as suspicious.

All of these judgements are based on instincts most non-autistics have. While “red flag” instincts can signal “different,” a neutral word, it is more efficient to automate all alerts as a “threat,” a negative perception.

It is only “better safe than sorry” for them, though. Sometimes they’re protecting their physical safety when they accurately detect danger. Other times, these instincts are protecting their privilege, ego, and their rank in the social pecking order.

We would be a threat to their popularity.

We might be a threat to their clear conscience because they would have to consciously acknowledge the harm they cause if they actually **see** us. It’s inconvenient.

Actually Autistic people: It is NOT your responsibility to help people people work through their biases at your expense.

Thin slice judgments are why people do not presume confidence for nonspeaking Autistics.

On Guardrailing Disabled People

NOTICE: Please read this caption before reading the slideshow. The slideshow contains an activity that needs context.

Autistic and other disabled people— whether or not others even realize they’re Autistic— are guardrailed.

They receive far more direction, unsolicited advice, and correction than everyone around them.

The reason for this is that people are uncomfortable with difference.

When it’s a child who is different, parents and professionals try to protect the child from abuse and social isolation caused by other people’s discomfort with difference.

Autistic adults will almost unanimously tell you that this kind of guardrailing has traumatized us. It has left us unsure of even the smallest decision because we’re so used to being shamed and redirected that we lose confidence in our autonomy. This also happens to non-disabled people, who have overly strict caregivers and professionals (often in fundamentalist religious environments).

The same phenomenon can also happen to people from minoritized races, religions, genders, ethnic groups, etc.

Basically, if you’re different from the majority, you’ll be “unpredictable.” That scares others and makes them uncomfortable.

ACTIVITY:

The last five slides contain scenarios that portray guardrailing as it might happen to an adult.

We are asking that you imagine yourself experiencing being guardrailed like this for one day. What would it do to you? How would it make you feel?

What would people around you think if you tried to complain about it?

How would you feel after a week? Two weeks? Twenty years? What would it do to your relationships, sense of worth, and emotional health?

Please sit for a moment with your feelings and imagine these scenarios and how they would impact you— and your Behavior— over time and post your reflections in the comments.

This is why autistic people often caution against over-enrolling disabled kids in intervention therapies and to be discerning about what is necessary for quality of physical and emotional health compared to what is for the comfort of others.

Thanks to Andi James Sanchez for image descriptions

Activism and Building Communities

This slideshow is to address an undercurrent of opposition that stalls change on every front. This isn’t meant to be confrontational, but to use as a tool for self-examination.

Every time an activist brings up how something in the status quo— meaning something that is the “norm”— is harmful, the mainstream goes through an adjustment period before changing their minds.

If you’re feeling like an activist is divisive, you may be reacting to a divide that has existed for a long time that you didn’t have to think about.

This is not a challenge to uncritically accept everything someone else suggests. This is a challenge to examine your own reactions to see where their origins are and to help you work out if you’re being fair.

Cognitive dissonance is not a moral failure. It is a result of being so grounded in your own reality that you struggle to understand, acknowledge, accept, and see the nuance of other people’s reality.

Or, you may have rejection sensitivity or trauma associated with being imperfect, so anything that seems to suggest you could be making mistakes, causing harm, or acting against your values may feel like a threat you have to silence.

You may actually be triggered, jarred, and experiencing extreme discomfort as a genuine reaction of trauma and a lifetime of being invalidated and under-appreciated. And, you might be wrong.

The internet is full of people from every intersection and demographic who are difficult, awful, mean, explosive, selfish, etc.

It is a tool of colonialism to make it seem like there are two opposing sides to every issue, as if someone can only be one way or another, or there can only be two possible outcomes.

When you feel yourself having animosity towards an advocate or activist, you can use these questions to confront the feelings you’re experiencing.

Building community begins with healthy boundaries for everyone. Is your frustration really that someone is asking you to stop doing something that harms them?

Building Community, Not Colonies

This April, we’re focusing on engaging in community with our NeuroKin and our allies and accomplices.

The autistic community is very young. It’s got growing pains. What most of us have in common is that we’ve never been allowed to celebrate our existence or being ourselves.

When we come into community, we hope to be free of the shame, exclusion, and control of broader society, so we become protective of our spaces.

What can happen, though, is that in trying to keep harmful things out of our communities, we instead keep people out who are victims of those social harms who can’t risk living in protest. Sometimes, access to safety depends on us complying with harm. And unlearning decades of ableism and healing from abuse is a long process.

We can both advocate for better ways AND accept that not everyone in our community can access better ways. Not everyone in our community can immediately change. Not everyone in our community wants to change.

We don’t have to police and condemn individuals for their personal choices— even if they’re harmful or wrong.

One maxim that is universally true is that when people trust you, know you, believe you, and feel like you genuinely care about them, they are much more willing to receive what you have to offer, including your advice.

We can let people know why we do what we do, and if they agree, if it does not harm their safety, and they don’t feel forced, they can choose to join in. That will lead to authentic commitment, not performative compliance.

We focus on building community because we all need community.

Written by Jude Afolake Olubodun and Terra Vance.

Autism and IQ

Many people assume that there are two kinds of autism: high functioning and low functioning.

Stereotypes for “high functioning” autism include being very good at math or science but being quirky and socially inept.

Stereotypes for “low functioning” autism are that a person is severely intellectually disabled and has the mind of a toddler.

Usually, what people see as “severe” or “profound” or “low-functioning” autism is really Motor Disinhibition (movements a person can’t control) and Apraxia (not being able to execute purposeful motor movements for things like speech). Those skills are unrelated to intelligence.

IQ tests are not adequate for truly understanding an autistic person’s abilities or limitations. They’re not great, period, and have been used irresponsibly to perpetuate inequalities for many marginalized populations.

When standardized tests are used, there should always be explicit exploration of how those tests may be inadequate for an individual and why. But there rarely is anything shared outside of the numbers.

But an autistic person’s IQ score has very little to do with their support needs. It cannot demonstrate an autistic person’s capacity as it was not developed for autistic minds.

Each autistic mind is different from other autistic people, too— so every autistic person would need individualized supports.

So why don’t we start there? By getting to know each individual?

Because society is increasingly geared towards mass-production.

The more we standardize, the more we marginalize everyone who can’t change themselves to fit in the “comfortable center.”

ActuallyAutistic cognition is very unique to the individual, and our approach should be as well.

While the analogy in this slideshow is an oversimplification of the #neuroscience, it’s a good way to understand that autistic hardware is different and how that impacts performance.

Here is an article that explores the language of disability rights when talking about IQ.

Here’s one about measuring autistic intelligence.

On Functioning Labels

Part 1

If you really want to see what the mainstream has so wrong about autism, notice how many ways the ability to produce and “function” is referenced compared to how many times emotional health or self-esteem get mentioned.

Just keep your pattern-recognition radar on alert for language that summarizes autistic people related to their utility or ability to produce. Then look around for the language that prioritizes seeing the whole person in all their nuance.

Discussions almost always center independence, which as a concept is a myth.

Independence really means being able to rely on structural supports to be able to get by. For most people, their environments, educational settings, careers, and even recreation are structured to be optimized for them. If someone appears independent, it is only because other people have structured the world around them to suit their needs. That’s called community.

Instead of being anxious that systems and structures won’t be accommodating, we are anxious about if autistics can at least blend in without complaining about having no accommodations.

Is that fair?

We therapize autistics to accept responsibility for not being accommodated— to not protest, to not complain, to remember to show gratitude that people even interacted at all, to be automatically respectful and deferent to authority…

We then treat autistic children as if everyone else is an authority on everything else. We socialize autistic people to believe they need to trust everyone else but themselves.

Is that wise?!

Function labels are typically used to describe tools and machines. When applied to people, it’s dehumanizing. It frames a person, often as their introduction and first impression, as an object.

“My child/student/client has autism but is high functioning.”

Our next post will give you examples of more humanizing language to talk about autistic people. Happy World Autistic Community today!!! Thank you for being in community with us!

Part 2

Functioning labels are often used to describe autistic people. These labels can be obvious (“low-functioning,” “high-functioning,” “severe autism,” etc.) or can be more subtle euphemisms.

Describing people in terms of support needs is more respectful but saying they have “high support needs” still tells us nothing about the individual.

Information about being autistic needs to serve a purpose other than simply minimizing non-autistic people’s anxiety or maximizing their sympathy.

If you only want to describe an autistic person as “high functioning” to let others know “they won’t cause you problems” or to ask them, “please don’t immediately project all your negative stereotypes onto my child,” then you’re setting the norm that other people’s prejudice deserves being validated and it’s the autistic person’s responsibility for being able to keep others comfortable by not taking up space or needing support.

If you say “low functioning” or “severely autistic” in the hope that others will have sympathy, you probably sense they’re not safe.

Better ways to characterize autistic people always consider the context and should help others to understand and accommodate them.

“Raya has hyperacusis which means she is very sensitive to loud noise. It actually hurts her. Could we turn down this music?”

“Stevie is nonspeaking and has apraxia and motor disinhibition. That means he can’t coordinate his body for purposeful movement, even for speech, and other times he has behaviors he can’t prevent, similar to tics. He is not misbehaving if he gets up, makes noises, or repeats phrases.”

“Jesse has a lot of anxiety about unexpected changes. When possible, can you help them know in advance of any changes in plans and what to expect?”

If you don’t yet have the language to describe these differences, that’s okay. You’re in the right place! Just hang around, and we will help equip you with the language and framework you need to better understand and talk about autism, autistic people, and accessibility.

Autism Awareness Campaigns

Many adult autistics have strained or non-existent relationships with their parents and/or siblings. At NeuroClastic, we try to help parents, educators , and service providers find healthier ways to relate to autistics so that there is less avoidable pain for the next generations.

We have an ever-growing body of evidence about what practices promote healthy development, and we know exactly what type of relational behaviors lead to codependence.

So it’s curious that most “autism interventions” seem to be designed to cause demand compliance and codependency. It’s as if some intervention approaches specifically are built to foster codependency.

Because autistic people can be more vulnerable to predatory relationships, it would be expected that there would be an urgency to prevent codependence.

Yet there are therapeutic practices and mainstream autism organizations that encourage and enable codependence, validating toxic relationship dynamics.

But why?

Because if a therapy depends on measurable progress to keep funding, then the progress has to be measured in behaviors— for any intervention.

This means that it is the therapists’ required duty to change behaviors. Often, those behaviors are indicators of pain and trauma from trying to survive the high-impact, fast-paced, too-loud world around us.

Changing those behaviors without changing the source of the pain just conditions your child to ignore their own needs and to accept distress in silence and without protest.

Asking providers of any autism therapy: what practice have you seen in your field that encourages co-dependence? What should happen instead?

Asking parents: what have you been encouraged to do that felt like it would be harmful to your child?

Asking Autistics: have you had difficulty in your adult life with relationships because you grew up having your boundaries disrespected and your autonomy violated?

Red Instead for Autistic Acceptance

Some of you probably know all about this already, but many are new to the community. Some readers have recently asked us why autistic people are using #RedInstead.

Hopefully, you can save yourself some emotional labor by sharing this (with your comments) in April instead of having to make the same case over and over. ❤️🖤♾

April is really hard for us. We didn’t ask for a month and certainly don’t like what gets done “for autism” without our input.

Red Instead is a counter-response to “Light It Up Blue,” an advertising jingle that brings people to Autism Speaks. #RedInstead is asking the world to pay attention to Autistic people instead of corporations that speak for us.

Every April, well-meaning people want to support autistic folk but know nothing about autism. They only know Autism Speaks. We go #RedInstead to prevent an org (and affiliated orgs and initiatives) that doesn’t need to be the “voice of Autism” from using our reality and neurotype as land they own all the real estate on.

Autism Speaks uses their extreme social, celebrity, and financial privilege to keep us from belonging— even in the discussion about our own lives.

This works because they validate neurotypical emotions, welcome non-autistics, and center them as people who “deal with” an autistic person.

They create a sense of saviorism in you, giving you only positive roles to play as the people destined to save us with your boundless empathy, money, popularity, and compassion as the “default” way to exist.

Autistic people don’t want to live at the bottom corner margin of everyone else’s hierarchies, especially not one constructed around autism.

Going #RedInstead in April is a way to show you respect autistic self-sovereignty and self-determination. It shows you believe autistic people should be centered in conversations about autism.

Read an article about Autism Speaks here.

On Looking Autistic

Part 1

We do often “look autistic,” which really translates to either experiencing #BigMood or focusing so hard we can’t be bothered to perform “normality.”

We can understand the bizarre facial expressions and movements of a guitarist playing a badass solo or an arm wrestler trying to win a match.

There are other times our faces look really weird because we’re so focused on making our bodies perform that we stop thinking about our face.

If we zoomed in on “guitar faces” and cropped out the guitar and background, then these faces look like people in the middle of intimate acts. 🥵

That’s because when we’re that focused on performing multi-sensory tasks, we can’t invest the energy to control our faces.

87% of autistics experience apraxia, or motor planning disability. Unlike autism, apraxia does exist on a severity scale from mild to severe.

If other people knew how difficult it can be to make an autistic mind and body perform like a non-autistic— if they could see how much work was being invested— then the facial expressions and movements would make as much sense as a guitar player’s during a solo.

Imagine judging Jimi Hendrix’s capability or intelligence or how seriously he should be taken by the faces he made during a solo.

Yes, purposeful motor planning and movement— plus the added brain battle of preventing motor disinhibition— can require as much concentration as a killer instrumental solo, depending on the degree of apraxia.

And if you’re awed by that guitar solo, and your jaw drops, do you “look autistic” standing there in awe?

You can understand autistic people if you realize you’re on easy mode and they’re on “legendary” difficulty. You’re playing the same game, but you’re not playing the same difficulty level.

Slides written by Terra Vance.

Part 2

As we unpack what it means to “look autistic,” it becomes clear that it’s more about what the spectators CAN’T see than what they do see.

The same thing that “looks autistic” in one context makes total sense to non-autistic people and is relatable in another context.

When anyone experiences BIG MOOD, they lose the composure to perform normality.

People understand and empathize with BIG MOOD only when they can see what causes it. It’s treated like insanity or a moral failing to experience things intensely.

Autistic people have very responsive nervous systems that can be hypersensitive to certain stimuli.

Anyone jumping and flapping their arms in joy feels extreme happiness. We expect that from lottery winners, but not from someone who just saw a really cool bird or heard the ice cream truck.

So what “looks” autistic is often just someone experiencing a bigger reaction than most people would given the externally-viewed circumstances.

Of course, there are other reasons a person can “look autistic,” and will cover those next.

Part 3

We recently had a few slideshows about “looking” autistic, and this is to go along with the theme of “looking” autistic.

We don’t really have a dress code, but autistic people may wear clues about their neurotype.

This slideshow is meant to be fun, not serious. Autistic people may have amazing fashion sense, may not care at all what they wear, or may use their bodies as signposts or rebellions.

Are you on this? What did we miss?

*Noting an auto-correct. Avant garde became avant guard 😫

April is Coming

April is very hard on Autistic people. Non-autistic people and people who have no connection to our community or even awareness that it exists will suddenly care for a few days.

They show up with very outdated stereotypes and harmful information, share a few tragedy-narrative posts created by non-Autistic people, and spend money on “experts” selling bad products and information.

This year, please center autistic people in April. Share posts from Autistic creators, and not just the 101, intro-level posts. Encourage your audience to have discussions and think deeply.

Be thoughtful in your shares. Make sure you’re centering nonspeakers and multiply-marginalized Autistic voices. Don’t curate what will make people most comfortable. Choose what will challenge them to do better, to know deeper, and to keep learning.

Donate to autistic orgs, like NeuroClastic and Divergent Minds. Buy from autistic-led businesses. Hire autistic consultants and speakers. Host Autistic guests in CEUs and Podcasts (pay them for this).

Follow us during April. We’re shooting for 30 days of community engagement, but that’s only if we don’t all burn out early 😬😅. April is really hard, y’all!

Let’s focus on building our community of autistics and accomplices this year. ♥️♾🎧🖤

What Is Colonialism And How Do We Decolonize

NeuroClastic is excited to announce to you the newest member of our leadership team, Jude Afolake Olubodun (he/him).

Jude joins NeuroClastic as the first Chief Decolonizing Officer, a title we hope many more organizations and businesses adopt as a part of their leadership structure. Decolonizing benefits everyone and helps us all move towards a healthier society.

Colonialism is a pillar of white supremacy that harms everyone. It is a belief in a hierarchy of worth and value that gives power to a dominant culture to erase, remove, disenfranchise, appropriate, exploit, monetize, and destroy indigenous people and those deemed as less worthy in capitalism.

Jude has a passion for building community that is safe and inclusive of everyone, especially those most often erased and forgotten. In the autistic community, this means finding a way to ensure that nonspeakers, Black, Brown, and Indigenous people, and others often forgotten are not left behind.

Stay tuned as Jude facilitates many community-building discussions. Our #ActuallyAutistic community has a culture that is unhealthy. We have been stuck in a loop of defending against oppression since autism was named, never having the time and space to know ourselves and each other so we could begin to build community. Now is the time for us to build mutual support and liberation.

Even though disabled people are harmed by colonialism, we still engage in perpetuating those harms and tearing down community because we’ve been socialized into colonialism, assimilation, competition, and behaviorism. We can unpack all of that together and learn how to support each other without erasing anyone.

The first two slides feature pictures of Jude, a Black trans man with natural hair and glasses. The third slide features a colonial plantation home in the American South. The 4-8 slides features Jude’s and other NeuroClastic members’ Black, Romani, Native American, Taino, and Guyanese ancestors. The final slide features stock images of people from various cultures and racial or ethnic backgrounds.

Circumlocution

Circumlocution is a communication disorder [or symptom of a disorder] that happens primarily to people with traumatic brain injury. People with this condition have a form of aphasia and tend to use a lot more words than most people or say things in an unexpected way. They may struggle to make clear points.

In conversation, this may look like, “There are four adults present who have a valid driver’s license & are unobliged” instead of saying, “One of us can pick up dinner if they’re not delivering.” People with circumlocution often give others a sense of “red flags” or being “off.”

A person with circumlocution often gets accused of making excuses or being a coward because they don’t always have the ability to directly state a point. Not stating the point can be seen as evasive and not taking a firm stance.

Like many communication disorders, dysregulation can exacerbate circumlocution and cause it to be much worse. Being “flustered” can lead to even more lengthy, atypical, round-about language. Please consider if someone’s communication is “off,” they may need patience and time.

Circumlocution is a communication disorder [or symptom of a disorder] that happens primarily to people with traumatic brain injury. People with this condition have a form of aphasia and tend to use a lot more words than most people or say things in an unexpected way. They may struggle to make clear points.

In conversation, this may look like, “There are four adults present who have a valid driver’s license & are unobliged” instead of saying, “One of us can pick up dinner if they’re not delivering.” People with circumlocution often give others a sense of “red flags” or being “off.”

A person with circumlocution often gets accused of making excuses or being a coward because they don’t always have the ability to directly state a point. Not stating the point can be seen as evasive and not taking a firm stance.

Like many communication disorders, dysregulation can exacerbate circumlocution and cause it to be much worse. Being “flustered” can lead to even more lengthy, atypical, round-about language. Please consider if someone’s communication is “off,” they may need patience and time.

Is The Neurodiversity Paradigm Compatible With Evidence Based Practice?

This post is written to address a trend in the mainstream of articles and narratives that portray neurodiversity as an opposite side of any debate regarding autism (even though all brains are under the neurodiversity umbrella). The intended audience is anyone in any professional or personal role who works with or interacts with autistic people.

Neurodiversity is often brought up in professional spaces as if it is an alternative to science. This is called a “false binary” where something very complex gets reduced to two “sides” and oversimplified to the point that no meaningful understanding can be reached.

It’s the old, “Us vs them” paradigm, no matter how many “Of course diversity matters” disclaimers one uses trying to avoid accountability for stereotyping whole groups.

Most disabled activists don’t really talk about Neurodiversity. It was the doorway many people entered on their way to finding community and self-knowledge.

Many advocates have negative feelings about Neurodiversity as a concept because it is too often a celebration of difference that avoids looking at oppression.

If you’re using the word “Neurodiversity” as if it means “a consensus from disabled people,” you’re just way off.

If you’re trying to prevent disabled people from speaking on what’s important to them, or what their experiences are like— even if you ARE disabled people— then you’re leaving people out of the conversation.

There is no neurodiversity club. There’s just a bunch of people with insights based on their own experiences and the information they’ve consumed from the silos they inhabit.

The autistic community does have a few ideas that are near-consensus, like that stimming should not be stigmatized and forcing eye contact is harmful, but we needed to move past those issues and get into the meat of intersectional and social issues and neuroscience a long time ago.

Continuing to debate from a false binary, setting up “allies” and “abusers” when 99% of people are both, or creating social “teams” to join and show loyalty to is reducing people’s complicated lives to shallow soundbites. It’s bad advocacy.

Those with the least structural privilege face the most consequence and erasure from this kind of surface-layer framing.

Your evidence base is a reflection of institutional privilege and is grossly inadequate. Listening to advocates is not an alternative to evidence. It is a supplement to an evidence base built on monetizing their oppression and exclusion.

Edited to clarify: On the last page, the last page, the last quote is meant to reference when people say not to listen to autistic adults because “they can self advocate,” as if only people who can type or speak are capable of self advocacy.

All slides are dark purple and white with neon accents. Slide 1 reads: Is the Neurodiversity paradigm compatible with Evidence Based Practice? What is the Neurodiversity Movement and is it compatible with therapies and intervention services?

Image description: What exactly is neurodiversity? Neurodiversity is not a political movement. It’s a biological fact similar to biodiversity. It is merely an acknowledgment that there is diversity in the way brains are structured and how those differences impact perception and sensory experiences.

Image description: What is the Neurodiversity Movement? The Neurodiversity Movement is social, philosophical, and political. It is the notion that differences are not inherently in need of remediation or to be considered “diseased” or “deficient.” The movement, like any sociopolitical movement, does not have leaders, a dogma, or consensus. It is a broad umbrella term that is usually applied to efforts to combat dehumanization of disabled people, to destigmatize disability, or to advocate for disability rights.

Image description: What is all the buzz about Neurodiversity? Within the autistic and broader disability communities, neurodiversity is rarely mentioned. Most often, those who bring up the Neurodiversity Movement are people either attempting to be allies or people attempting to maintain political supremacy in the therapy/intervention industry. Some people misappropriate the notion of Neurodiversity as a political ploy to set up a false binary that pits professionals and parents against advocates. This is always ridiculous.

What do people get wrong about Neurodiversity? Neurodiversity is not the idea that autism and other disabilities are all funshine and brainbows* [sic]. A person can have profound neurodevelopmental disabilities that are inherently debilitating and cause tremendous suffering. Neurodiversity is not a bunch of quirky, self-diagnosed people who watched some TikTok videos and decided they are disabled because they’re awkward and bad at organizing. If you ever thought this, go ahead and cringe a little. You fell for the classic “kids these days” narrative.

Where does treatment fit in the Neurodiversity Movement? There is no monolith among disabled people about what treatments are appropriate, but most autistic people oppose therapies that seek to change a person’s core self to appear more “normal” or less autistic. Many also feel that accommodations are often more appropriate than skills training. For example, instead of training someone to tolerate (in appearance) loud sounds, they should be given ear defenders.

Image description: Who should I ignore regarding Autistic people? No one. You don’t need to ignore anyone if you are hoping to be informed. You need to evaluate your own information literacy skills and your values. If you can be convinced to harm children and violate your boundaries and values because you simply listened to someone, you need to work on information literacy so you’re not susceptible to nonsense. If you think an institutional evidence base is always superior, then you don’t have the values or information literacy you need to have to work with autistic people.

Image description: What is the agenda? Is someone trying to convince you to paint large groups of people as a monolith in order to prevent you from listening to or respecting marginalized people? If someone talks about the “neurodiversity movement“ as if it’s a cohesive set of principles or a membership club, they’re trying to set up an “Us vs Them” false binary. Binary thinking is a tool of colonialism. If someone paints the neurodiversity movement as having a dogma, like a religion, then they’re trying to get you to devalue and dehumanize people according to stereotypes because listening to marginalized people disempowers the oppressor.

Image description: But are there any red flags? People who set up discussions creating false binaries trying to get you to disregard or devalue an entire marginalized group are employing colonized tactics to let you know it’s socially unacceptable and you will lose your power if you side with the oppressed. Any messaging that paints a marginalized group as extremists who are unsophisticated, uneducated, "savage," or unreasonable has a colonial mindset and is unwilling to give up their privilege in the effort of progress. We see this most with the "severe autism" lobby and the speech language-ABA cluster of people who suppress communication rights.

Image description: Examples of Colonizer Rhetoric “They can’t be trusted. They support Rapid Prompting Method.” ”Having ASD does not mean they are an expert. Do we listen to people with cavities or do we listen to dentists?” ”Am I just supposed to accept fecal smearing, elopement, public masturbation, and extreme self-injury and aggression?!” “They can advocate for themselves!” (From people who believe their clients cannot self-advocate)

Not All Behavior Is Communication

Disinhibition Part 1 | Overview

This slideshow may be triggering to people who have used “all behavior is communication” as a slogan for understanding the root causes of behaviors.

Mostly, this phrase is applied to young children and disabled people who have complex communication barriers or have not yet been supported to have reliable communication access.

This population can have much more pronounced disinhibition, and they suffer profoundly because nonsensical, meaningless movements and speech are interpreted as communication.

Yes, some behaviors are absolutely nonsense and in no way what the person wants to do. They may yell “PRINGLES” when what the want to say is, “I’m tired of doing kindergarten work every day.”

Sometimes, behaviors are caused by underlying medical conditions support and education staff cannot identify or treat.

Most people understand communication as a social exchange, and not all behaviors are social or “for you.”

Behaviors may be indicators but not communication. Wheezing can be an indicator of asthma, but it’s not intended as a message for you. It’s not intended. Period.

Autistic and other neurodivergent people are often gaslighted, accused of attention seeking, accused of dishonesty, or dramatically underestimated.

Our culture of “experts” need to admit their limitations in understanding autism and learn what it is that they are entirely not qualified to treat.

Lack of knowledge about disinhibition:

keeps nonspeakers from having access to age-appropriate education
leads to shock torture at JRC
leads to serious medical emergencies being dismissed as “autistic regression”
echolalia and tics that are meaningless being criminally prosecuted
worsens debilitating OCD/disinhibition

We will explore disinhibition in depth in the next parts of this series. Disinhibition can be mild or severe and may vary in severity depending on complex factors.

The wrong treatment for disinhibition can increase shame and make symptoms far worse— even life threatening.

Stay tuned as we unpack this complex topic.

Sources can be found here.

All slides are in a blue and yellow theme and have white or yellow text. There are some decorative accents on the slides that are not related to the content. All slides have @NeuroClastic on them. Slide 1: Title slide reads: Not all behavior is communication. Disinhibition Part 1: Overview

Slide 2: The word "communication" is broadly and commonly understood to mean sending information to a recipient. In social contexts, most people understand "communication" to be a social behavior that means an exchange of messages takes place. Meaning is derived in part from the intentions of the communicator and in part by the interpretation of the recipient. Tears could be communicating socially that a person is sad and would like support. Tears could be an unwanted indicator of sadness that a person would prefer others ignore. Tears could be totally unrelated to emotions and could have medical or neurological origins. Tears could be a result of something irritating the eye, like onions, fumes, or a scratch on the cornea. Implying tears are always communication suggests that it is up to another person to understand the source and treat it. Autistic and otherwise neurodivergent people experience trauma and harm from people who may have good intentions but are not qualified to accurately understand or respond to their behavior. Autistic and otherwise neurodivergent people experience trauma and harm from people who may have good intentions but are not qualified to accurately understand or respond to their behavior.

Slide 3 Not all behavior is “For you.” Many neurodivergent people experience disinhibition. Their words and actions are often the opposite of the message they want to send. Believing that these behaviors are messages to you that you can determine the function of is dangerous and can override the autonomy and safety of the person with disinhibition.

Slide 4 What is disinhibition? Disinhibition is a trait of many neurological conditions and includes: Motor disinhibition: compulsively engaging in actions that involve movement and/or speech. It is difficult or impossible to control for the person who experiences it Emotional disinhibition: feeling compulsive, intense emotions that are disproportionate to, or unrelated to, antecdents Cognitive disinhibition: being unable to filter or stop intrusive, irrelevant, inappropriate, nonsensical, or overwhelming thoughts in order to focus attention

Slide 5 Disinhibition: Root causes Disinhibition is related to structural and chemical differences in the brain that are believed to involve the basal ganglia, corpus callosum — specifically the pregenual anterior cingulate cortex (emotional and cognitive), and motor cortex (movement and speech). Neurotransmitters associated with disinhibition include GABA, dopamine, serotonin, and norepinephrine.

Slide 6 CoNditions associated with disinhibition* Apraxia/dyspraxia Autism Autoimmune encephalitis/PANS/PANDAS Tourette’s/tic disorder/coprolalia ADHD OCD Epilepsy/psychogenic seizures Inflammatory/immune-modulated conditions Traumatic brain injury, dementias, Alzheimer's Addiction Parkison’s *Not everyone with these conditions will experience clinically significant disinhibition. This is not a comprehensive list.

Slide 7 Possible signs of masking motor disinhibition you have permanent ridges on the inside of your cheeks from biting them have almost nothing left of your mangled fingernails are missing patches of pulled-out hair have crusty lips from biting them eat even after you’re painfully full have broken teeth from grinding touch things you walk past blink or clear your throat compulsively echo movements or phrases in social contexts

Slide 8 Terms to know Coprolalia: A disinhibitory condition that causes a person to swear and say lewd, inappropriate things they would never want to say. It is neurologically similar to mania and OCD. Copropraxia Similar to coprolalia but with actions and gestures instead of speech. People often experience both concurrently. Jargon Aphasia Speech that mirrors the cadence and speed of conversational language but may not make sense, uses many word approximations or nonsense words, neologisms (made-up words), or words out of order. Compulsive talking An inability to stop talking even when the conversation partner is obviously not interested. Compulsive talkers may speed up conversation and make it louder or follow someone trying to escape. Compulsive talkers often talk about themselves. Hypersexuality Compulsive and intrusive sexual thoughts, sexualizing non-sexual acts, compulsive masturbation, or obsessing over fear of committing inappropriate acts.

Slide 9 Not always communication While compulsive behaviors may be indicators or traits of a condition, they are not always communication Echolalia is sometimes communication and sometimes utter nonsense (yes! NONSENSE!) You cannot logically understand compulsive behavior Therapists who look for the "root" of disinhibition behavior or try to treat it can cause extreme harm to clients Not all repetitive behaviors are healthy, regulating stims Compulsive behaviors that suddenly get worse can be an indication of epilepsy, autoimmune encephalitis/PANDAS, meningitis, multiple sclerosis, etc. Medical conditions are often written off by professionals as "autistic regression" and treated with speech, behavioral, or occupational therapy instead of needed medical treatment Brain inflammation, especially in early childhood, can cause permanent and severe disability Disinhibition is not a moral failure or a behavior that can be managed with better self control

Slide 10 Stay tuned for future slideshows that cover these topics and more in greater depth Written by Terra Vance

Disinhibition Part 2 | Apraxic NonSpeakers And Communication Rights

GREAT NEWS!

In all our years of being active in this community, we have never seen such authentic investment and allyship from people in professional fields as we’ve seen in the last few months.

Thank you for joining us. Welcome! Bring your friends!

Let’s build on that momentum together, as a community.

Getting things wrong is inevitable. We live in a world where so many things are wrong, wrong is the standard. It’s the most human behavior to be wrong.

Disinhibition is a wrong society has always gotten wrong. We’ve always treated most behavior as volitional.

Instead of asking the world to adapt your atypical definition of “communication” and making autistic and other disabled people pay for the consequences, please make the decision to change your language.

All behavior is an *indicator.* Breathing is an indicator of being alive. It’s not usually communication. Sneezing a lot can be an indicator of allergies. It’s not communication. Seizures, meltdowns, tics, motor loops, and many behaviors disabled people engage in are not communication.

Nonspeaking apraxic people with motor disinhibition often do not do well with traditional forms of AAC because they touch the wrong buttons or get distracted or can’t focus their eyes (yes, motor disinhibition can affect the behavior of eyes).

Executive functioning deficits are related to disinhibition.

Disinhibition and executive functioning can be mild or severe.

We need to listen to people who figured out that motor disinhibition is why many students are nonspeaking (yes, motor planning impacts speech) because of disinhibition. Their “challenging behaviors” are because of disinhibition.

We are on phase 1 together right now: understanding the neurological and chemical underpinnings of behaviors.

Thank you for joining us on this journey to a better future for everyone.

Sources can be found here.

All slides in this presentation are in a theme of dark blue and minty green. There are some decorative accents that have nothing to do with the words on the slides. Slide 1: Not all behavior is communication Disinhibition Part 2: Apraxic Nonspeakers and communication rights

Slide 2: Advocacy that does not consider those who Are most marginalized is toxic. Those who are at most risk need to be considered first in everything we do. If you are unwilling to make an adjustment in your catchy slogans because they work for you, then you are causing harm. People without access to reliable communication, minoritized racial and ethnic populations, and people with serious medical conditions are at high risk of being misinterpreted as dangerous and being badly injured or experiencing loss of life because of the widespread-but-inaccurate belief that all behavior is communication. If someone does not have reliable communication, and they have any signs of disinhibition, the need to get them reliable communication is urgent. There is not enough urgency because too many people believe that all communication is communication and that they-- or the experts who use these slogans-- can always accurately interpret and address those behaviors with behavioral interventions. This includes therapists and educators from ALL FIELDS. Do not make this an “ABA” thing because the problems are systemic and even exist in autistic self-advocacy. Let's focus on solutions that are actually NeuroInclusive.

Slide 3: No, you can't always rely on your instincts. Yes, it’s devastating that we have to wonder if our nonspeaking, minimally-speaking, and unreliably-speaking apraxic children and adult neurokin are communicating or if they’re just saying or doing things they don’t want to say or do because of disinhibition. But we’re not going to pretend nonspeaking apraxic people with motor disinhibition don't exist because it’s convenient for pre-packaged narratives that don’t work for them.

Slide 4: When apraxic nonspeakers get Communication supports that work For those with motor planning deficits and disinhibition, they communicate loudly and clearly: I lack the ability to make my body respond to my will. I often pay for that through others believing I wish for things I don't, am ignorant of things I am not, and think or feel things far from the truth. Please ask me for the reason you seek. From Sabrina Guerra. View her page at: https://www.facebook.com/SabrinaGuerraNonspeakingAdvocate/

Slide 5: Don’t Read TREVOR'S behavior AS COMMUNICATION “Simply looking at me gives you exactly zero information about who I am. If you saw me at the store, you would see my stimmy hands and hear my scripts and think I am stupid. If you actually got to know me, you would realize I am a snarky, smart teenager operating a body of a fool. My brain and body don’t talk well to each other. It is like they run different operating systems. The idea that people can be mentally competent but struggle to control their body is completely normal when we talk about someone who gets injured or has a stroke. This is not true when people think about autism. Apraxia does not discriminate, so neither should we when we assign the possibility of intelligence to humans.” Trevor Byrd Read more from him here: https://neuroclastic.com/author/trevortypes/

Respect Wyatt's spelled words: Slide 6: I keep speaking “all done” when I mean “love to get to work.” I would really like to be doing piano lessons. I would really like to be doing lessons for school and helping with chores. But instead, I shout ALL DONE and get stressed over not being able to control my body. “Make me get to work,” I shout. “Make me have a good life.” But nobody listens. It is all in my head. This makes me so frustrated. I so like to be learning and busy. I have big plans for my life. My life can be so full of amazing stuff. -Wyatt Dutton Read more from Wyatt here: https://lifefriesandautism.wordpress.com/.../lip-service/...

Slide 7: Hallelujah for communication choice: The first time I met the principal at my school, I chanted ,“Hallelujah!” loudly in his face. Kind of putting a lot of meaning to it, he said, “I’m flattered.” If I’d had my letterboard with me, I would likely have said, “Trust my finger, not my speech.” Same as a Deaf person. I hate how my intelligence is judged by how I speak. �This perception is not helped by the nonsense that falls out of my mouth. Just now, while writing that sentence about Deaf people, I clearly said aloud, “The boy is riding a bicycle.” Total ABA flashback. There are no boys or bikes anywhere near me. That doesn’t mean that I’m stupid or that I’m thinking about boys or bikes. What it does mean is that I’m like a parrot on steroids with the world’s best memory. Read more from Ashna here: https://neuroclastic.com/the-view-from-here-but-you-can.../

Slide 8: William illustrates how Easy it is For others to believe his Disinhibition is communication: “Sometimes my speech says one thing and my letterboard voice says another. This afternoon, my speech said “Yes” to mom’s offer to give me a snack, but my letterboard voice said, “I don’t need one.” Though she knows to trust my letterboard voice, I still saw her hesitate to trust what I typed. To be fair, though, I’m not one to turn down a snack. But aren’t we all entitled to change our routines?” -William Read more from William here: https://neuroclastic.com/the-view-from-here-but-you-can.../

Slide 9 Not always communication: How can you know if your apraxic nonspeaking children, clients, or students are actually communicating what they want? You can’t for sure until you get them reliable communication. The teens and youth quoted in the aforementioned slides are not outliers. Most nonspeakers communicate the same messaging over and over and over. Why do all nonspeakers not have access to reliable communication? Because the autism intervention industry is relying on their “gold standard” buzzword slogans like “ALL BEHAVIOR IS COMMUNICATION” to keep control of the narrative. You have been the free advertisement for that. I used to be free advertisement, too. I didn’t know better, either. So we have to work together, as a community, to center communication rights for those with motor planning deficits and disinhibition.

Slide 10 What does work? That’s for the next slideshow. What’s coming: What works for learners with motor disinhibition and why we are not already doing what works [spoiler alert: it’s pesky academic cronyism] Motor loops, compulsive self-harm, hypersexuality, and intrusive thoughts How well-intentioned professionals ruin lives by mistaking disinhibition for communication How medical conditions like autoimmune inflammation, epilepsy, and meningitis often get mistaken for autism and are left untreated How trauma, shame, and behavior-based interventions impact people with disinhibition More based on your questions and comments… what do you want to know more about? Let us know in the comments! Written by Terra Vance

Disinhibition Part 3 | Finding Reliable Communication For People With Motor Disinhibition

It wasn’t until entering and participating in the Spellerverse that many people truly began to understand the nuanced ways that motor planning, apraxia, OCD, & motor disinhibition impact MOST autistic people, even those with fluent speech.

Did you know that recent studies show that 87% of autistic people have clinically-significant motor planning disability?

Did you know that 86% of autistic people experience clinically-significant OCD at some point in their lives?

Did you know that disinhibition is a facet of executive functioning?

Those numbers are so similar because OCD, disinhibition, and motor planning are neurologically rooted in the same parts of the brain.

There are also implications for pain-seeking, shame-driven, & many other behaviors related to these neurological differences.

Therapies that focus on “hard work” (by increasing demands on already-dysregulated systems) can exacerbate negative and challenging aspects of behavior.

Intrusive thoughts or motor disinhibition that is treated as reflections of a person’s true self will cause that person extreme harm.

We empower people with disinhibition and treat them with respect when we understand that a person is NOT their disinhibition or intrusive thoughts.

If you feel that the Spellerverse is not relevant to you or your child’s/student’s/client’s lives, you’re missing out on critical knowledge about autism almost no one is talking about.

What is called “severe autism” is often severe disinhibition, motor planning deficits/apraxia, and/or severe OCD.

What is called “mild autism” means that people internalize the same difficulties and get well-intentioned-but-harmful or absolutely zero help to understand their own brains.

All slides are in a black and royal blue theme with decorative accents unrelated to the text. Slide 1: Not all behavior is communication Disinhibition Part 3: Finding reliable communication for People with motor disinhibition

Slide 2: In 1984, Anne Donnellan established the notion of “The least dangerous assumption.” Donnellan, a special education researcher and pioneer of communication rights, proposed a new framework for approaching students with complex communication barriers. In cases where a person’s neurology prevents them from being able to demonstrate their cognitive skills and capacity, they are typically treated as if they do not have capacity. Donnellan emphasized that without verifiable data, professionals need to make assumptions that are the least dangerous for learners, and that means to presume competence. This paradigm shift can dramatically help nonspeakers and unreliable speakers with motor planning and motor disinhibition that prevents them from being able to demonstrate their full potential without adequate supports.

Slide 3 Presuming competence Instead of relying on observable behavior to communicate a person’s capacity to learn, we presume they have the cognitive capacity to understand age-appropriate educational materials and that instruction needs to be modified to support their communication needs. Presuming competence is unpopular within disciplines that rely on data collection of observable behaviors. When one thinks of theoretical physicist Stephen Hawking, who spent decades unable to control his body to speak, toilet, or walk but who composed multiple books with assistive technology, the importance of presuming competence is obvious.

Slide 4: Anne donnelLan was also a pioneer of communication rights: Motor supported communication Because of emerging understanding of the impact of motor apraxia (not being able to consistently plan and execute purposeful movement and speech) and motor disinhibition (not being able to stop unintentional movement and speech), researchers and educators developed and began implementing approaches to communication that accommodate for those differences. One approach was facilitated communication, where a facilitator provides physical support to a person to point to letters on a letterboard.

Facilitated communication & controversy Physical therapists were already using letterboards and supported spelling to support communication and rehabilitation for people who experienced traumatic brain injuries from stroke, impact trauma, meningitis, etc. But pioneers in special education began developing similar techniques for individuals with conditions present since birth, like autism, cerebral palsy, and other conditions that impact motor planning and ability. Facilitated communication became popular because for many people, it worked; however, with its emerging popularity, many lay practitioners began using the method, a method that has a high potential for facilitator influence (the facilitator consciously or subconsciously directing the hand of the learner). This vulnerability to influence gave rise to much skepticism in academia.

Slide 6: Enter rapid prompting method (RPM): Tito Mukhopadhyay was born in Bangalor, India, in 1989. His mother, Soma, was told that her son was severely “r*tarded” and would never be able to learn, but she could tell he was capable. She quickly realized his uncooperative body and eyes betrayed his curious mind. So she began experimenting with ways to help support his sensory dysregulation, motor planning, and motor disinhibition so that he could have reliable communication. And it worked! Tito, now 32, has authored many books and has published on NeuroClastic. Soma began teaching RPM to others and still works tirelessly from HALO Soma RPM in Austin, TX. Thanks to Soma’s work, thousands of nonspeaking, minimally-speaking, and unreliably-speaking people now have access to reliable communication.

Slide 7: Spelling 2 CommunicaTe (S2C) Then-SLP Elizabeth Vosseller, who originally trained in RPM, would later develop S2C, an approach with many similarities to RPM. Both RPM and S2C use a graduated series of analogue and digital technologies and sensory supports to help learners with motor planning, disinhibition, OCD, and sensory challenges. In both methods, learners gradually move from pointing to large letter stencils to a full-alphabet stencil, then later a computer keyboard or tablet with digital AAC. There are theoretical differences between the two methods, but they both are effective at gaining reliable communication. These methods often work for learners with motor planning and disinhibition where traditional AAC has failed because they focus on providing sensorimotor supports.

Slide 8 The SpellerVerse People who use FC, RPM, and S2C, are colloquially referenced as "Spellers" because they communicate by pointing to one letter at a time. Spellers, their families, communication partners, instructors, and the group of allies who spend time working with them and advocating for communication rights make up what is affectionately called "The Spellerverse." NeuroClastic is an org heavily operating in the Spellerverse with many contributors, board members, and advisory board members active in our org. You can browse our site and videos on Facebook to learn more! We are working on a list of resources for parents looking to learn more.

Slide 9 Where to get started Reach Every Voice is a nonprofit that works with youth to help them gain access to reliable communication. They have a virtual, self-paced course for parents and professionals called “Accessible Academics.” It teaches you how to adapt your approach to accommodate for learners with motor planning and disinhibition challenges. Many of our contributors and several who contributed quotes for the last slideshow gained access to communication at Reach Every Voice. IEP review services also available. Price: $99 for course Where: ReachEveryVoice.org Autistically Inclined offers a variety of affordable virtual courses to help parents and professionals support learners. This site is a treasure trove of information with many free resources. Price: Starting at $25 Where: AutisticallyInclined.com

Slide 10 Live Q&A Panels Coming On Wednesday, March 2 at 1:30 Eastern, we will host a live Q and A with nonspeakers, communication partners, and autistic advocates on all things disinhibition and communication. Learn about more resources and how to get reliable communication. More live Q&As and live streams on these topics and more coming later this week and next week! Stay tuned for announcements and leave your questions in the comments. •Motor loops, OCD, compulsive self-harm, hypersexuality, and intrusive thoughts •How well-intentioned professionals ruin lives by mistaking disinhibition for communication •How medical conditions like autoimmune inflammation, epilepsy, and meningitis often get mistaken for autism and are left untreated •How trauma, shame, and behavior-based interventions impact people with disinhibition

Disinhibition Part 4 | Types of Intrusive Thoughts And Compulsions

Content notice: this slideshow describes disturbing intrusive thoughts many people experience.

Hopefully, we are all beyond the harmful idea that all behavior is communication and are beginning to understand what disinhibition is.

Inhibition is an executive function. That’s why you see “impulsivity” as a trait in so many diagnoses. But disinhibition is about much more than just being impulsive.

Tourette’s, OCD, tics, impulsivity, and several other conditions related to unwanted/compulsive behavior have origins in the same parts of the brain.

And the brain is different from the mind. Intrusive thoughts are like tics, but they’re internal. They are not communication any more than a sneeze, a hiccup, or a tic.

Therapists, teachers, parents, and peers are often shocked and horrified by intrusive thoughts. Many people who try to talk about their intrusive thoughts get criminalized or treated as a threat. They get told their intrusive thoughts are real or come from some buried trauma or deviance.

Folks, not everyone’s brain is evenly distributed. Sometimes there’s traffic jams, some parts work faster and are more connected than others. Sometimes signals get mixed up. Sometimes wires are crossed. Sometimes inflammation complicates the flow of consciousness.

Those things are from the brain, the organ, and not the self.

Teaching people how to process their intrusive thoughts— like having an internal junk mail and spam folder— is going to save them a lot of trauma.

On Thursday, March 10 2022 at 4 pm EST, 9 pm GMT, we will be welcoming India Haylor, head therapist at OCDexcellence, for a live Q and A.

Text-based pdf for screenreaders may be accessed here.

Slideshow and post written by Terra Vance (@ahabinspace on Instagram)

An Open Call To Intervention Therapy Providers

Dear therapy providers,

One reason your field continues to be behind and to cause harm to autistic and other marginalized populations is because of a self-perpetuating engine of toxic supremacy endemic in all of academia.

If you are accepting that this problem is just a problem with behavior therapy, you are relying on your field’s privilege and not being honest with yourself or others. These toxic dynamics built on prejudice are in all of your fields.

They are all operating on the same foundational beliefs of supremacy and inheritable “rightness.” These practices are borne in the prejudices and beliefs that native cultures and disabled ways of being are wrong, uncivilized, unevolved, and “entitlements.”

You are indoctrinated in academia to see yourself as a benevolent colonizer doing your clients a favor. You feel pride based on how much your kids appear to thrive in the standards and goals you have been taught are ideal ways of performing. Society reinforces your beliefs.

Your identity becomes one of savior, not of accomplice.

Can you provide CEUs? If so, you can host autistic advocates who can help to decolonize your field’s practices.

Yes, this applies to OT and speech therapy. This even applies to less accepted forms of therapy.

Did you get a modern understanding of neuroscience and how having a brain that is structurally different feels from the inside? No?

If you’re afraid of professional backlash, then your field is a toxic silo of supremacy. If you’re not trying to fix it, you’re the problem. Be the change.

Please use the comments section to tag professionals, ask questions, offer advice to others in your field about how to do this within your field’s ethics requirements for CEUs, offer your services and areas of expertise (if you’re an autistic professional), etc.

Let’s work together to build the community we need.

Image descriptions: All slides have a black, white, and purple background with text. The text is as follows: Slide 1: An open call to intervention therapy Providers

Slide 2: All providers: Whether you’re a speech therapist, behavior analyst, occupational therapist, music therapist, or do less common forms of therapeutic interventions for autistic children (and other forms of neurodivergence), your fields are largely using the same approaches and evidence base

no field is immune. The same biases that cause intervention therapies to be inappropriate— and even abusive— for autistic children are endemic in our society and culture. They are steeped in white supremacy, medicalization, and beliefs about what it means to have a “better life.”

Academia has an Ego proBlem. In academia, trusting others based on their credentials and self-aggrandizement is the norm. The dedication to their “evidence base” is not a reflection of academic rigor or honesty. It is a reflection of falling in line to a culture of supremacy that is often far from reflective of best practices.

What if you found out that there actually is a robust evidence base for many things your field claims is “pseudoscience”? What is you found out that many other things that are widely understood to be “evidence based” have no reliable evidence?

What would you do if you learned that you have perpetuated misinformation and bad practices because of the toxic dymanics embedded in academia?

let’s find out. Host autistic professionals and provide CEUs that broaden your professional community’s insight into how the “evidence base” you’ve been indoctrinated to follow is replete with academic dishonesty. If you can host a CEU, then your ethics code allows you to have guests from outside your field as long as the issues discussed are within your field’s framework and relevant to the field.

What Topics need to be addressed from autistic perspectives? Let us know in the comments.

Parenting Autistic Kids | On Healthy Touch

Parents of autistic children often worry when advice that works for most children isn’t a fit for their autistic child.

From professionals to other parents at the playground, parents of autistic kids are often judged as “bad” or neglectful if their children don’t enjoy the same things or behave like non-autistic kids.

This can leave parents with a lot of insecurity about if they are failing their children; plus, providers push parents to override the consent of their autistic children.

It is as if emotional safety and autonomy are privileges many feel only non-autistic children are entitled to.

Written by Terra Vance, a psychology professional, former teacher, and autistic parent of an autistic child, this slideshow can help parents understand and navigate the sensory differences that can lead to children having different touch needs.

The swuddle, ruddle, fluddle, and buddito were invented by Vance’s autistic five-year-old. When kids know their needs are valid, they naturally become great at self-advocating and communicating their own needs.

It’s okay, parents, if you have to tell people to stop parent-shaming. The more we normalize giving individuals the customized approach to touch, learning, communicating, eating, etc. they need, the healthier everyone’s approach to parenting will become.

A great parent is a parent who adapts their approach to honor their children’s specific needs.

Image description An illustration of a female-presenting adult with long dark hair, holding a male-presenting child in their arms. They have the same colour hair. The adult has their eyes closed and nuzzles the child's cheek. The child is looking toward the viewer. They are both smiling. Text reads "Parenting Autistic Kids on Healthy Touch. @neuroclastic"

A parent kisses a young child on the cheek. Image reads: But sometimes, autistic kids resist physical touch. Parents may worry they are not giving their children what they need if they avoid cuddles and hugs. Many therapists push “tolerance" approaches. Basically, touch them until they “get used to it.”

A dad holds two unhappy kids. One is crying and one is angry. Image reads: But in order for touch to be healthy, it must be consensual. You don’t want to accidentally send your kids these messages. I am bad if I say no. My body belongs to anyone who tells me so. What I need makes others angry at me. I have to be uncomfortable to be accepted. I have to accept people touching me when I’m uncomfortable.

Image features a dad holding a little girl’s hand. It reads: Due to sensory differences, autistic kids can struggle with even necessary touch parents cannot avoid. -Car seats and high chairs -Diaper changes and bathing -Doctor and dentist visits -Holding hands in parking lots -Dressing cuts and scrapes -Brushing teeth and clipping nails

A grandmother sits in a chair holding a baby Image reads: So, we focus on helping our kids to understand that we value their consent and will not touch them unless it is necessary for health and safety. Try these statements. You don’t have to hug anyone unless you want to. When we go to the doctor, they are going to feel your belly and take your temperature. It is okay to like hugs sometimes and not other times. You can choose every time! Let’s practice brushing our teeth so you can do it yourself. Granny has to put you in this car seat so you will be safe. But I will do my best to be quick.

Image has four panels and some sketches of affectionate actions like two bears hugging and parents tickling their daughter Image reads: Touch can be difficult for several reasons understanding tactile defensiveness (touch aversion) They may struggle with “intimacy overwhelm,” or feeling too overstimulated by emotional closeness. They may experience pain or distress from most touch and be very sensitive to any pressure or heat differences. They may feel claustrophobic and panic with physical proximity or things moving toward their face. They may not enjoy light touch, but they might love bear hugs and horseplay.

Image is titled: Touch habits can teach you a lot about your child’s sensory needs Image reads: Are you your child’s favorite jungle gym? That’s seeking proprioceptive feedback— the “push/pull” sense that loves climbing, jumping, and wedging into tight spaces. Image of a child climbing their mom’s back. This child may not love regular cuddles because they are looking for deep pressure input, but you might invent some variants they love. The swuddle: A swuddle is a live action cuddle that involves holding your child in the air and swinging their feet back and forth. The gravity and motion give them the sensory feedback they’re seeking for their joints. Image shows a parent giving a swuddle. The Fluddle: image shows a parent lying on their back with their feet up in the air and a kid balancing on their parent’s feet like an airplane. The ruddle: image shows a child riding on a dad’s shoulders.

Does your child love to spin? Hang upside down? Jump? Bounce? They’re seeking vestibular input (the balance system)! Maybe try some hardcore rocking in a rocking chair, or jump on a trampoline together! On the flipside, a person may be a vestibular avoider and be terrified by movement. Maybe try a buddito! A buddito is wrapping them tightly in a weighted blanket to help them feel grounded (also a proprioception bonus)! Image shows a parent holding hands with and spinning with their child Another image shows a mom reading a book to her two kids wrapped in weighted blankets. Softer sensitivities Some children have extreme sensitivity to touch. They may find it hurts, burns, or feels like an electrical sensation on their skin. It can feel like having no skin, so even a gentle breeze is overwhelming. Thick clothes that have evenly-distributed pressure may help for some kids. Others may need very lightweight and loose fabrics with no seams or tags. Image shows a kid smiling in a thick hoodie and another kid in a thin, loose dress with no obvious seams.

Image reads: 4 Ways to support your autistic child with touch Let them know that their body belongs to them and they can choose what touch they want (if any). What feels healthy to you might be very unpleasant or even painful to them. Respect their communication and feelings. Understand that your autistic child may give and receive affection in ways that are different from others— and that’s okay! Sensory needs change and depend on lots of factors. Focus on consent and follow your child’s lead!

On Executive Functioning

Part 1 | Decision Anxiety, Executive Functioning, OCD, Autism & ADHD

Executive functioning is related to structural and chemical differences in the brain. Basically, it relates to how efficiently signals can get to where they’re trying to go to signal the brain to perform tasks.

We almost always discuss executive functioning in terms of productivity, not in terms of how it impacts a person’s social interactions and emotional health.

If a person has a lifetime of painful social, emotional, and practical consequences due to invisible disability, then every decision feels so critical because the chance of disaster feels imminent.

If you’re unable to rank things in your mind, to determine risk levels and organize your thoughts, everything can feel like the chances of disaster are 50/50.

The ability to be “responsible” and “thoughtful” is associated with morality, passion, and care. If a person has profound executive functioning disability, then they begin to see every decision and action in terms of risk.

This can lead to a sort of paralysis that prevents a person from being able to even force themselves to do anything, even the simplest task.

On the flip side, they may impulsively do things not well planned because they know they do not have the executive functioning and time to manually sort those thought processes that are so automatic for most people. This, plus neurological predisposition, can develop into debilitating clinical OCD.

This slideshow is part 1 of a series on the social and emotional impact of executive dysfunction. It is intended to help readers see how it feels from the inside to live with this invisible disability.

Have you said these things to a disabled loved one? Have you internalized these messages and said them to yourself? Does this help you to better understand yourself or others?

Part 2 will focus on how to be emotionally supportive to someone with executive dysfunction.

Written by Terra Vance.

Part 2 | Emotional Support For Executive Functioning

The most important point to remember with this slideshow is that this is not a formula that will help with every person in every circumstance. These are ideas that are meant to help you begin to adjust how you understand people with executive functioning disability and see your role in supporting them.

Some of these things may work for an individual, some may not, and others may depend on your relationship.

It is possible that you have unintentionally gaslighted the person you want to support, and that may require long and steady repair now that you better understand executive dysfunction.

Simply showing a person this slideshow and asking them what would work for them is a great way to begin establishing that you are willing to learn and try better ways. They may be totally unaware of EF and be so relieved to see that others have their struggles, it’s not a moral failure, and they are not thoughtless, inconsiderate, or lazy.

If you have benefited from these posts, then that alone is a testament to how powerful being metacognition— or thinking out loud about how your brain is processing— can be to start bridging communication between people whose brains work differently. These posts are metacognitive.

Part 3 will focus more on the nuances of communicating about emotions and mental health when someone takes a lot longer to process and identify their feelings.

The following mental and neurodevelopmental diagnoses are highly correlated with executive functioning deficits:

Autism
ADHD
Dyslexia
Dyspraxia
Sensory Processing Disorder
OCD
BPD
Anxiety
Depression
TBI
Lupus
Fibromyalgia
PTSD

Executive functioning does fluctuate, to a degree, with health, diet, fitness, medication, and emotional safety, but some people are wired in ways that limits how much improvement can be made. People with profound EF disability need supports in order to be able to thrive.

As an org, we try to respond to the needs of our community. Based on your feedback, we see this is an important topic. We will continue to create more resources about EF. 🧠♾💚

Written by Terra Vance.

On Autistic Masking

Part 1

Dear Non-Autistic Friends,

People believe that #ActuallyAutistic masking is acting neurotypical, but that’s a gross over-simplification of what is actually happening.

Autistic masking is largely trying to adapt in real time in various social situations in order to avoid being misinterpreted or wrongfully accused of lying, passive aggression, selfishness, backtracking, egotism, and the list goes on…

We have differences that are very real but very complex and hard to describe. It’s like learning a whole language and culture. The vast majority of non-autistic communication is non-verbal, with meaning being implied or conveyed in tone or body language.

Autistics are calculating the norms for the context, then trying to predict for what the other person would like to hear in response, what tone they need to hear it in, how much they want us to look at them, what gestures and facial expressions they want to hear, etc.

We are not pretending to care or playing a role. We are adjusting to what goes against our neurology so you don’t mistake what comes naturally to us for apathy or rejection or something other than what we really feel or believe.

Masking hurts everyone. It’s not sustainable. We are not masking to trick you into thinking we’re neurotypical. We’re responding to the native language with our often-broken second language. We are working against our instincts, constantly. It’s exhausting.

Part 2

Dear Non-Autistic Friends,

If you ever wonder what it is that you can do to help #ActuallyAutistic people unmask, you will have to take a journey of humble curiosity with us.

We are the one taking the risk. Opening ourselves up and showing vulnerability has caused us a lifetime of pain.

First of all, we hate hierarchies. If we sense that you perceive us as inferior—socially, emotionally, genetically, intellectually, or in relation to communication, empathy, being a human, “mental age,” etc.— we will feel that difference with every strained interaction.

Not only will you never get to know us, truly, because unmasking in your presence is too dangerous, but you will never get to see us at our best. You’ll never experience the good in us. You’ll never see us in a well-regulated state.

You can’t know us until you acknowledge that your empathic instincts, hard-wired into your neurology, only work for relating to other non-autistic people.

You will have to stop seeing us as just as neurotypical with deficits. You’ll have to stop seeing us as deficient. You’re not the default, just the majority. We’re not a broken version of you.

So, to start unmasking, we will need to believe that you aren’t seeing us through the lens of a power differential.

On the flip side, if you romanticize us as superior, put us on a pedestal like we are enlightened by default, and treat us like we have a direct connection to universal wisdom or superpowers, then that’s still a hierarchy that dehumanizes us.

We are your equal. Not better. Not worse. Not inherently right or wrong. We just need to trust that you get we’re different and will interpret us differently.

For real, though. We might be a bit clumsy Jedi or dyslexic Vulcan… 😅🖖 😎👽🛸

But you can still sit with us. We wear tagless shirts on Wednesdays. ⛔️🏷

Part 3

How to support autistic unmasking:

Be curious: To know an autistic person, you’re going to need to *want* to understand how they are different from you. It’s okay to ask honest questions.

Be metacognitive: Metacognition refers to thinking about how you think. It might be out of your conversational norm, but narrating your thought process about how you arrive at conclusions or what things mean to you will help autistic people to better understand how you think and give them an opportunity to describe what they were thinking. This is vital to clearing up miscommunications.

Be honest: Most people probably don’t want you to be so honest, but we really need to hear your truth.

Be direct: This will go against your instincts, but we need you to be direct. Very. We are likely to misinterpret your hints, and that can lead to unnecessary conflict. Also, remember being direct is respectful to us. We are not trying to be aggressive if we’re very direct.

Be trusting: We are not likely to be manipulative or gaslighting. Trust us with good faith that we mean well and are trying to connect with you. Remember, we are the ones taking the biggest risk when we unmask.

Be proactive: Instead of requiring an autistic person to do all the educating on autism, learn from other autistics. Follow diverse content creators so you can learn how being autistic and otherwise marginalized adds complexity to how we have to navigate the world. Follow Deaf, Blind, Trans, Black, Indigenous, Asian, and Nonspeaking autistic creators.

Be relaxed: You may feel insecure about trying to interact with us, but you can relax. We will feel your tension but not understand why that barrier is there unless you tell us with words. Once we are both relaxed, we can build a relationship.

Image reads: masking is not just acting neurotypical. It’s largely a balancing act to maneuver around the false assumptions neurotypicals project onto us.

Image reads: Unmasking happens when we are safe. We cannot be ourselves when the risk is too high. Being too authentic is like trying to walk into a wildfire. We know how bad it will hurt. Autistic masks are not cosplay. They're respirators.

Image features a tardigrade drawn by Kate Jones (@dissentbydesign). In a talk bubble are seven ways to support autistic unmasking. They are as follows: Be curious, Be metacognitive, Be honest, Be direct, Be trusting, Be proactive, Be relaxed

Reading Body Language | What Are Autistics Seeing Compared to Non-Autistics?

We posted a tweet that is included in this slideshow. People asked for examples, and this post is intended to get feedback from autistic and non-autistic people – and #NeuroLurkers, if you’re not sure or still exploring. Please forgive the lack of image descriptions as we try to provide this post in a timely manner. Also, as this is about interpretation of visual cues, I’m having a hard time figuring out how to do image descriptions and keep this post meaningful or how to modify it for Blind readers or readers with visual processing differences.

And yes, autistic frens, these are stock images. Instead of the staged photos, imagine what your perception might be if you witnessed a similar (non-staged) instance.

Autonomous Over Independent | Part 5

ASHA’s position statement against RPM has dropped the values of #autonomy and #interdependence.

Almost 100% of our community’s apraxic nonspeaking advocates have achieved reliable communication through RPM, S2C, or FC. Representation is critical to the health & wellness of any marginalized community.

By making wild conjecture that reads more like the plot driver of a low budget sci-fi film than a credible evidence base, using citations from the work of Twitter trolls and AAC inventors whose technology has proven ineffective to help this population, ASHA ignored conflicts of interest & basic common sense. ASHA literally used one (poorly designed) study as a reference in their position statement that compares autistic apraxic communication to Ouija boards.

Instead of valuing autistic autonomy, the emphasis is now placed on independence— if it’s not done without support, it’s shameful, not valid, too expensive…

ASHA is working against autistic human rights, engaging in hate crimes equivalent to cutting out the tongues of speaking people.

Apraxic nonspeakers need sensory supports and rigorous motor planning therapy, as is provided in RPM, in order to work with bodies that often work against them.

The alternative is often placement in care facilities that keep them mechanically & chemically restrained most of their lives.

Where is the position statement against electroshock torture on this same population at Judge Rotenberg Center? Denying the reality of motor disinhibition and apraxia paves the way for movement disabilities to be punished as intentional behavior.

It is time that your professional organizations stop working against our community to preserve the financial and political interests of an-all white, non-autistic group of belligerent bullies who all passed around an article mocking every autistic presenter at the #ActuallyAutistic conference at Penn State last month.

We call on all allied professionals to stand in solidarity with us in demanding your professional organizations prioritize autistic communication rights.

Autonomous Over Independent | Part 4

One of the most important and least discussed needs of our community is for autistic people with severe apraxia to have access to reliable communication.

Approximately 1/3 of the autistic community is nonspeaking, & very few of those individuals have access to reliable, robust communication.

This is in part the fault of the American Speech-Language-Hearing Association (#ASHA) & the Speech Pathology SIG (special interest group @spabasig ) of the Association of Behavior Analysis International (#ABAI).
Most nonspeaking autistics are nonspeaking due to #apraxia, which is often referenced as the “brain-body disconnect.”

This means that apraxic nonspeakers are nonspeaking due to deficits in *motor planning,* NOT due to intellectual disability, & traditional forms of AAC rarely empower apraxic nonspeakers to communicate beyond basic needs.

Apraxic reliable communication depends on supporting the development of motor planning skills— NOT behavior or language.

This means a primary customer of speech language services & of ABA therapy— those they attempt to label as “severely autistic”— need more services in the vein of physical and occupational therapy.

#RapidPromptingMethod (#RPM) and #Spelling2Communicate (#S2C) are wildly successful methods that help #nonspeaking autistics with apraxia manage their sensory systems and gain motor planning support to spell by first pointing to letters on a stencil board and gradually moving to a computer keyboard. They need the support of a communication and regulation partner (CRP) to do this.

This slideshow and the next will focus on how ASHA moved from an inclusive perspective that embraced the needs of #Nonspeaking autistic people to a capitalist model of #independence.

This slideshow contains quotes from a position statement on the rights of people with complex communication disabilities. This was written in 2002.

They focused on #autonomy over independence. Then, in 2018, they went through a merger with the behavior industry and issued a statement that would cause RPM and similar methods to be inaccessible to schools and would prevent access to needed supports for people who use these forms of communication.

Title slide reads “autonomy over independence: reframe your language, reframe your practice” Part 4: On how communication rights are built on respect for autonomy

Image reads: the myth of Independence is weaponized to deny apraxic autistics access to communication. How asha failed nonspeakers according to their own standards. Part 1. Image features two separate photos. One is of a sad child and the other is a finger pointing to a letterboard.

Image is titled, “ASHA USED TO ACKNOWLEDGE THE VALUE OF COMMUNICATION CHOICE” and has a quote from ASHA (2002) that reads: [A]n individual's communication partners need to be directly involved in order for communication services and supports to be effective. To enable an individual's meaningful participation in daily activities, communication services and supports must be provided using the model(s) of service delivery most suitable for the individual. […]

Slide features a woman giving a thumbs up and an “okay” hand signal. Image has the following two ASHA quotes: Decisions regarding team composition, types, amounts, and duration of services provided, intervention setting, and service delivery models should be based on the individual's communication needs and preferences. Effective communication has been demonstrated to enhance self-determination, personal perceptions of outcome, quality of life, and social interactions. Beneficial outcomes such as these result from services and supports provided directly to the individual as well as those provided to the individual's communication partners. [...]

Image features a teen using an AAC device and a young child playing with a colorful ornament. Text wraps around the images and is a continuation of the quotes from the aforementioned ASHA position statement: Justification for denial of communication services and supports for persons with severe disabilities is often based erroneously on a narrow concept that “communication” pertains only to the use of standard linguistic structures and traditional output modes (i.e., speech and writing). In actuality, “communication may be intentional or unintentional, may involve conventional or unconventional signals, may take linguistic or nonlinguistic forms, and may occur through spoken or other modes” (National Joint Committee for the Communication Needs of Persons With Severe Disabilities, 1992, p. 3). Therefore, considerations of communication intervention should include multiple forms and modes based on a person's communication needs and preferences.

Image features a man rejoicing with extreme happiness. It has two other ASHA quotes: This means that an individual's communication partners need to be directly involved in order for communication services and supports to be effective. Family members, friends and peers, teachers, and other service providers must feel comfortable and be knowledgeable about the ways an individual expresses him/herself.

Image has three columns with titles and below the title is an ASHA quote in each: Asha recognized that expression was Unique to the individual Individuals with severe disabilities express themselves in many ways, including speech, gestures, facial expressions, vocalizations, and body movements (ASHA, 2002). And that motor planning & sensory disabilities impacted communication There are also a number of symbolic but nonspoken modes of communication that may be used by individuals with cognitive, sensory, and/or motor disabilities (ASHA, 2002) And that outcomes needed to be based on the individual’s needs and preferences Categorical denial of communication services and supports without consideration of a person's unique communication needs may violate federal statute, and may also violate state law, regulation, and policy. (ASHA, 2002)

Image has a figure with a thumb down indicating displeasure. Image reads: But In 2018, Asha issued a statement against rapid prompting method (and similar methods) and facilitated communication

Image features a woman gasping and reads: For many years, a small group of people have opposed rpm and fc (and now s2c). There is a huge graphic “NO!” in the center. Following is this text: Guess who was on the ad hoc committee behind the ASHA position statement… This quote is followed by a graphic of a text bubble with the word “yep” in it.

image features graphics of two people with rainbow infinity gear holding signs. The top reads “Stay tuned for the next slideshow tackling ASHA’s harm to autistics,” and the second sign reads, “On how ASHA sold autistic rights away to the behavior industry.” On the right, there is a screenshot of ASHA’s position statement against RPM with a large red X in the center.

Autonomous Over Independent | Part 3

Parents and professionals usually have the best interest of autistic children at heart, but that’s often because they can’t see the broader implications or what life is really like for autistic adults.

A major fear is that autistic people will not be able to work or go to college.

And we’re trying to say that the problems autistic people face are often completely unrelated to any deficits or failures on the part of the autistic person.

Many of us face the most antagonism from subtle social dynamics and the prejudices of people in power.

This slideshow has one story from an autistic man who did everything “by the book” to be a great employee, but promotions come with more nuanced social dynamics. #AskingAutistics is this story relatable?

Research on employment retention is clear– working at a place that allows a person to be challenged and use their skills in a meaningful way is the highest predictor of job satisfaction and employee retention.

But autistic people often work far below their potential, expertise, and skill level because of social exclusion.

We are natural specialists. We are wired to deeply invest in an area of passion, but from a young age our passions are treated like a pathology and shamed.

The opportunities available in society are often designed for neurotypical employees. They don’t leave room for the tremendous potential autistic people could invest if given access to work the way they need to work.

Independence is not the problem. Lack of autonomy is. One accommodation most people can access that is often not available to autistic people is good faith, or being believed as honest, capable, and a valued contributor to a work environment. The efforts to intervene on autistic development is structural gaslighting. Autistic existence isn’t the problem. Nothing autistic people can do will situate them to “win” in an environment designed without their input and with policies, procedures, and workplace norms designed in ways that tacitly exclude them.

You can view the full video presentation here.

Slide features a masculine presenting person holding a sign that reads, “I need work.” Statistic reads that 85% of autistic adults with at least a 4 year degree are unemployed compared to 4% of the general population

Image has a blurred image of a car dealership sales floor with the following text: Mark, an autistic man, was working in a garage associated with a locally-owned car dealership. Mark was always on time, was great at fixing everything and problem-solving, never missed work, and never had any problems. His employer, the owner of the dealership, took note and promoted Mark to the sales floor.

At first, Mark was working in small sales– tires, service plans, accessories, etc. One day, the floor was busy and one of the top car salespeople, Scott, came to assist Mark. Scott finished a slip Mark had started. Concerned with following the rules, Mark approached the senior salesperson and asked him, “Aren’t we supposed to finish all tickets we start?”

Image shows blocks like dominoes toppling each other. Text reads: Scott believed Mark was passive-aggressively accusing him of trying to steal Mark’s commission– just a few dollars– on a tire sale. Mark was simply trying to watch out for Scott and himself by following the rules and ensuring neither of them got in trouble for breaking protocol.

Image features a desk with a crumpled paper on it next to a discarded tie. Text reads: Scott went to management and complained about Mark, ranting that he “Just wasn’t a fit for the culture.” Mark was let go after the third simple misunderstanding.

Image features a man sitting on the steps to a business with his head in his hand, looking distressed. Text reads: What happened to Mark is an example of how as someone moves up in a career, the social nuances of the workplace culture are less concrete and more intuitive. Mark flourished in the garage because all expectations were concrete, and he only needed to solve mechanical problems. Independence is not really the problem.

Image has a photo of a man working on a car. Text reads: This is a true story that autistic adults will find relatable. What did Mark do wrong? In what way did he fail? How many jobs will Mark lose for similar reasons? What childhood therapies could prevent this from happening over and over? Mark did not have the structural supports his co-workers had. They saw it as a moral failure. It was a moral failure, it just wasn’t Mark who failed.

A stack of books sits to the side. Text reads: A lack of knowledge is not the problem. A lack of skills is not the problem. Autistic people are actually great at learning all about their trade and mastering the work. The problem is that the expectations of a job are that they are performed in the same way that non-autistic people perform them and that social norms are expected to be intuited. Our intuition will never lead us to behave like a non-autistic person.

People are sitting in chairs presumably at job interviews. Text reads: Autistic people don’t need to be pushed into independence— or a life of feeling like all their roadblocks are moral failures. Autistic people need to be validated that, yes, other people’s misconceptions and biases are often why they don’t succeed. They aren’t failing; they’re being failed.

Autonomous Over Independent | Part 2

The language of invisible disability is becoming increasingly more about the highly American, capitalist value (myth) of Independence (see part 1 slideshow).

When we only address observable behavior, we ignore the internal processes that drive those behaviors.

Autistic behaviors cannot be measured or understood according to the understanding of what those behaviors mean for the neurological majority.

The result is ten thousand microaggressions– the proverbial death of a thousand paper cuts.

Having processing differences or deficits mean that performing in a way that is unnatural to a person’s neurology takes up much more energy than performing naturally.

So supports need to work towards allowing the person to function authentically, and/or reducing the demands so the autistic (or otherwise neurodivergent) person is not putting in much more effort than their peers.

What we do to autistic people is condition them that with enough effort, they can be “normally functioning,” leaving them to feel as if they are a moral failure if they need supports or can’t perform like someone with typical neurology. This is cruel and abusive.

This slideshow features several quotes from googling “autism treatment” and they’re followed b quotes that are edited to be more autonomy-focused.

You can view the full video presentation here. Stay tuned for more slideshows on this topic.

Image has a picture of a cell phone with Google cued up and “the ‘tism” in the chat bar. Text on the side reads, “The following slides are some of the first results when Googling "autism" and "therapy." After the original quotes, there are edited quotes that prioritize autonomy over independence.”

Slide has a person giving a thumbs down and reads, “Many parents of children on the spectrum worry that their child can never have the level of freedom their neurotypical peers experience in adulthood. While for some this may be true to one extent or another, independence is something that can be built in any child on the spectrum.” Retrieved from thePlaceForChildrenWithAutismDotCom A second text box reads, “Let's fix this!” and an arrow cues to the next slide.

Slide has a person giving a thumbs up and reads, “Many parents of autistic children worry that their child can never have the level of freedom their neurotypical peers experience in adulthood. This is because society overvalues independence and undervalues interdependence. Let’s work on building a support system!”

A woman stands with her arms crossed in an X, in front of a quote that reads, “Can a person with autism spectrum disorder live an independent adult life? The simple answer to this question is yes, a person with autism spectrum disorder can live independently as an adult. However, not all individuals achieve the same level of independence. The focus of intervention services is to help the individual achieve their highest possible level of independence, and that won’t look the same for everyone.”

Picture shows a happy person cheering in front of a quote that reads, “Can an autistic person live an autonomous adult life? The simple answer to this question is yes, definitely! Not all individuals achieve the same level of independence, but the right supports can mean equal autonomy. The focus of support services is to help the individual find ways to know themselves, choose a career path that matches their strengths and passions, then providing with the right accommodations to live their best life.”

A person covering their eyes in front of a quote that reads: “Remember your first time driving on your own at 16? The fresh air blowing in your hair, blaring your favorite song, deciding to take a left instead of a right—simply because you can. At 16 years old, all I craved was independence. Now as a Board Certified Behavior Analyst (BCBA), I spend a lot of time helping children with autism achieve their own independence.” There’s a big “yikes” under the quote.

A woman pointing at the audience with a “you got it now” expression on her face in front of a quote that reads, “Some autistic people can drive, but visual processing or motor planning deficits can make it unsafe for others. At 16 years old, all kids are looking to define themselves as autonomous. There are lots of ways to keep that autonomy without being a driver. Let’s look into if they can drive, and if not, on staying safe with friends, navigating public transport, and other ways to get them where they want to go with autonomy!”

Image has a quote with a man beneath staring up at the quote. The quote reads: AutistIc people are not struggling because they don’t have life skills. That’s not the problem. They are struggling because they have deficits in motor planning, executive functioning, visual processing, auditory processing, sensory regulation, and/or they’re experiencing bullying or social exclusion. They need supports for their very real disability. No amount of willpower erases their real disability. At the bottom, a hand holds up two strips of paper that read "invisible disability is real"

Slide has a quote box that reads: Neglecting to teach autistic people about their neurological differences and disability sets them up for a lifetime of believing they are just lazy, willful, and a burden. They will still have disabilities, but they won’t know what that means. They’ll think it means they’re wired to be inadequate. At the bottom is a box that reads, “stop it!”

Autonomous Over Independent | Part 1

Mid-late October, NeuroClastic’s Kate Jones and Terra Vance presented on shifting the language of disability discourse from having “independence” as the primary goal to building more “autonomy.”

Independence is a myth and a value judgement. It is a cultural value that feeds into hierarchies. We posit that the value of independence prevents autistic people from knowing themselves (and their families from knowing them) and puts tremendous MORAL pressure on disabled people or people from any marginalized group to assimilate into the dominant culture without the structural supports and privileges that the majority enjoy as the “default” way to exist.

Instead of teaching autistic people about themselves so they can make informed decisions and seek the accommodations they need to thrive, autistic children are therapized to believe they can do anything if they only have the will power.

This sets autistic people up to fail in perpetuity because they will need accommodations and supports.

For example, autistic kids are always discussed as “Will they be able to drive one day?” It’s never, “let’s evaluate for executive functioning, motor coordination, spatial awareness, and visual processing to determine if driving is safe and with what accommodations so they can make an informed decision.” Then, if they have an accident, it’s “Irresponsible” or “not paying attention” or “being reckless.”

What is reckless is never letting autistic kids learn about their neurological differences and what accommodations they may need so they aren’t forever positioned to see themselves as a moral failure for having an invisible disability/multiple disabilities.

Autonomy means having the supports one chooses to lead the best life possible. Freedom is in knowing ourselves deeply and what we need to accommodate for disability so that we don’t place all our value in the mythical Independence paradigm that doesn’t serve anyone except those with the most privilege.

Click here to watch the full presentation and another breakdown of how independence as a value harms nonspeakers’ access to communication choice.

Image description: a black and white photo of birds in a cloudy sky. The left side is full of birds close together, flying as a flock. The right side contains one bird of the same kind flying alone. Text reads: what is independence? And why is it a value?

Image description: a photo of a page in the dictionary, with the word "independence" highlighted in yellow. Slide text reads: From Merriam Webster: not requiring or relying on others (as for care or livelihood). From Dictionary.com: not dependent; not depending or contingent upon something else for existence, operation, etc. Not relying on another or others for aid or support.

Image description: a black background with countless tiny circles in shades of blue and green, reminiscent of stars, some connected to each other with fine light-colored lines. Text reads: Independence is a myth. No one lives independently. Can you think of someone who is independent?

Image description: A color photo of a young person in a wheelchair, outdoors at the bottom of a concrete staircase. They are wearing jeans, a red shirt, and a black jacket. They have light skin and short hair and have a resigned, discouraged look on their face. Text reads: When you read about autism, from resources created by non-autistics, the focus is on "programming" autistic people to be more "independent."

Image description: Text reads: "What Americans and other people from individualistic cultures see as independence is actually just a value judgement based on access to structural privilege. In reality, we all benefit from the work and accomplishments of others, and how successful a person is largely depends on how much those structural supports were designed in their favor and to advantage people with the same circumstances. Much of the work that benefits those with more privilege was done by exploiting those with less privilege." Artwork is a line drawing of a grey mountain above green grass and a segment of the brown earth below the grass. On the mountain, these words are printed: Race, wealth, body size, sexuality, ability, neurodiversity, attractiveness, age, gender, housing, class. On the underground area, these words are printed: Safe environment, shelter, education, caregivers, language, health, food, safety. Artwork by Kate Jones of @DissentByDesign.

Image description: A grey (maybe stone) sculpture is seen against a black background. It depicts a person with facial hair in an Ancient Greek looking robe and sandals holding on their shoulders a sphere with the continents of Africa and Europe and the Atlantic Ocean visible, as if they "have the weight of the world on their shoulders" and are heavily weighed down by it. Text reads: "Prioritizing independence places the weight of structural oppression on disabled people. Independence is a value, not a reality. It is a measure of how valid someone is in a capitalist society based on how well they can perform without supports, making the need for support seem too entitled or like a burden on the economy."

Image description: Aqua colored text slide with quotation marks in the upper left corner. Text reads: "Society sells independence like it is some type of path to freedom. I like to say that freedom is the ability to live the life that you so want to live. If I wait for independence, I will miss much of what I want to experience. I want to go live a full life. I need help to make that happen. Autonomy makes my life meaningful, gives me freedom, and makes my life worth living. - Wyatt T. Dutton, Nonspeaking Autistic Advocate. Wyatt illustrates that without the support needed he has less autonomy. True freedom is not freedom from supports, but the access to engage in life given the supports others with structural privilege have as "default" rights."

Image description: Aqua and grey colored text slide with a picture of a black letterboard. Most of the letters are the background aqua color, but the letters J, O, and Y are filled with rainbow colors. At the top of the slide is a quote: "The point about independence is not understood - that it takes praxis not intelligence. While autonomy can be exercised if support for praxis is given. - Sid" Text at the bottom of the slide reads "Sid is a nonspeaking autistic advocate. Praxis (the root of the words "apraxia" and "dyspraxia") means translating an idea, or a desired movement, into action. Instead of thinking that motor planning is equivalent to the ability to communicate, learn, and even think - the focus should be on supports for motor planning until a person has the communication access they need."

Image description: On a blue background, an illuminated lightbulb with thin silver arms stands in a gesture with one arm raised and a finger pointing up, while the other hand rests below and looks like it is "on its hip." Text reads: "A focus on autonomy mirrors structural privilege. Relinquishing control is necessary to support autonomy."

A Response to @lo.devalera's Post About Judgement

Lo has been posting about the importance of using social media to create content that inspires community-building through conversational collaboration. Inspired by that, this post is a response to a post made by Lo about how we all make judgments about everyone and everything every day. Thank you, Lo, for this #FoodForThought.

As a former DBT counselor, I learned a cool trick that helped me change my mind-- by that, I mean I reshaped my thought habits (Terra Vance) @NeuroClastic

When we make value judgements, that things are right or wrong, good or bad, or we should or shouldn’t, that is a reflection of a learned habit to judge in absolutes. @NeuroClastic

If we critically judge others constantly, we will also judge ourselves that way, seeing everything as needing to be improved or as being “right” without room for improvement. This leads to group think and seeing ourselves and others as worthy or unworthy. @NeuroClastic

This kind of constant judgement is toxic to ourselves and to society. But we can be NeuroClastic! @NeuroClastic

NeuroClastic translates to “breaking strings,” or harmful thought patterns we internalize. It takes the brain approximately 3 months to form a new thought habit. @NeuroClastic

To break your habit of making value judgements, fill one pocket with small objects, like pennies or tokens or even shreds of paper. @NeuroClastic

Every time you make a value judgement, even if just a silent thought, move a penny from your full pocket to your empty pocket. This keeps you aware of your thoughts. @NeuroClastic

Challenge yourself to reframe your judgements from being “good” or “bad” to “what exists.” Think about why you feel those things are good or bad and turn the penny over in your fingers until you are finished exploring your thoughts. @NeuroClastic

You will begin to notice that every day, your contentment improves and you are more accepting of yourself and others. A great reminder is, “Don’t ‘should’ on yourself.” @NeuroClastic

The Social Model of Disability

ArtsAflame collected information from so many autistic people to create these spectrum critters. Their original illustrations are an example of autistic creativity.

Learn more from the Spectrum Critters here!

The Autistics' Question by Tejas Rao Sankar, Autistic Nonspeaking Advocate

Love to feel that I have goals that use my mind. Love to feel that I have goals that are lofty. Hard to work on goals that are lower. Autistics try to levitate on their dreams. When they question their goals they come crashing down.

Working on the easy goals in our Lifeplans and IEPs try our feelings. Working on those goals that get us to keep our bodies in check please only those who write our goals for us.

The use of very tried and trusted worlds on the autistic’s goals gives the question – give in or lead the world to a newer place.

The autistic question goes as follows…..Give in to autistics’ far going quest to be leaders in our own future or give in to a future lead by ableists giving them a future.

Can I teach myself to have a goal that is less than myself? When to lower your goals is the autistic’s question. Questioning myself is the way I live. Plan to lower my goals to help the ableist love me? Lower my goals so I can have some life? Questioning myself is the way I live. Giving in, to lower my life, to fit in.

The forbidden track is too lofty, going to a place autistics have not learnt to travel. The forbidden to use opportunities of the world track towards morning in the nonspeakers’ world. Morning to plan our own lives. Morning to listen to our own goals. Morning to let us go places we have only gotten to in our depressed desert land of dreams.

You can read the article and Tejas’s bio on our website here.

You can leave Tejas a tip on his Ko-Fi account here.

Autism, Religion and ABA

Many autistic people have experienced religious trauma when their non-autistic peers or siblings with a similar life didn’t. This is not meant to disparage religion but to show how autistic people can be impacted much differently by conditioning.

When autistic people advocate against ABA and call it abuse, a lot of people believe they mean the therapists are being mean to the children, beating them, or yelling at them. While that does sometimes happen, we are generally talking about the conditioning aspect that is subtle and gradual.

Most autistics know what it is like to have society send us daily messages that we’re wrong and less and even sinful. Many autistic people have experienced having people believe they were demon possessed.

People misread our stimming, atypical eye contact, and different communication forms and styles as suspicious or indicating that we’re dangerous or not trustworthy. They think our sensory issues are us just being willfully picky. They think we need harsh discipline for our own good.

People bully us because we are different. They shun and exclude us. We don’t know how to talk about ourselves and self advocate and recognize our feelings because others don’t understand them and tell us they’re not real. When we focus on behaviors, we risk changing them without addressing the underlying needs that drive those behaviors.

There is no perfect formula or replacement for intensive interventions. There’s just radical acceptance. Accept your child and do your best to understand them. Believe they are not trying to be difficult. They have needs for a different kind of life than most people can lead, and it is hard as a parent to provide that life.

This is shared not to shame anyone. It’s shared because many parents wouldn’t naturally catch or see this, and seeing it now can help prepare for a better future with better relationships with your autistic child. It’s shared with the good faith that parents want help to understand the future consequences of their parenting approach.

(Written by Terra Vance)

As an autistic child, I experienced religion very differently from my family. The notion that I was born a “sinner” sank into my consciousness. It ruled my thoughts. Thinking of myself as being born “dirty” consumed me. @NeuroClastic

I evaluated all my thoughts and actions relentlessly looking for the sin in them. I obsessed over the abstraction that my sins were shameful. Some sins were obvious - not to steal and not to lie. But others were very complicated. @NeuroClastic

I took everything more seriously than everyone around me. I panicked about my own thoughts. One scripture said that hating someone was the same as murder. My literal mind was tormented by this as my fleeting emotions became as serious as killing people. @NeuroClastic

Religion was a tool of conditioning adults used to constantly remind children that they needed to see themselves as inherently bad and to not trust their own instincts or logic. They used it to shape our behaviors. @NeuroClastic

I loved my Sunday school teachers. They were sweet old ladies. They loved me, too. Still, they contributed to a lifetime of trauma and feelings of inferiority because of my gender, too. The ways I was different felt sinful. My doubt was sinful. My anger was sinful. @NeuroClastic

Conditioning did not impact others as much as it did me. I internalized far more shame, guilt, and self-doubt. This was partially because of how I was wired and partially due to sensing how different I was. Many of my peers grew up to raise their children in the same way they were raised. They are happy. @NeuroClastic

I see “autism ABA” as being the same. To imply that “autism” needs intervention is to imply autistic people are “born sinners.” It’s worse because only autistic kids are put through it. OCD is unrelenting suffering, and autistics are very vulnerable to OCD. @NeuroClastic

With or without intervention, autistics will already internalize that they are different. They will already doubt themselves constantly because they’re not the same as others. They will already feel like they are on the wrong planet. Society strongly values “normal.” @NeuroClastic

I advocate against autism interventions because I have barely survived. Several of my autistic friends didn’t. This is not to say that religion or spirituality are inherently bad, but to illustrate the risk of conditioning autistic children as inherently “bad.” @NeuroClastic

When autistic people say ABA (and often other intervention) is abuse, this is why. We are already conditioned by society to see differences as being “wrong.” We believe it is critical to work against social messaging that implies existing as autistic needs intervention. We advocate for radical acceptance instead. @NeuroClastic

On Using NonSpeaking, Minimally Speaking, Or Unreliably Speaking Over “Non-Verbal”: NonSpeakers Weigh In

The words we use influence our own and other people’s perceptions. Non-verbal communication is something we all do — sighs, eye rolls, smiles, stomps, laughs, blinks — but what does it mean when we label a whole person as “non-verbal”?

Let’s challenge ourselves to use the language preferences of the communities we reference.

As always, respect the individual person’s choice, but when referencing a group, go with the preference of the majority.

Nonspeaking doesn’t mean I have no ideas or no way to communicate them. Nonspeaking doesn’t mean I can’t learn to read or write like everyone else. But I can’t if you don’t teach me how. And calling me nonverbal is like saying I can’t learn to read and write. -DJ Savarese. Image has a colorful sky as the background with the quote above in a box.

I prefer to be called non-reliably speaking. I am perfectly capable of thinking and making intelligent choices regarding my life if I have the facts to analyze. However, my speech is not always reliable, so I have to slow down, think about the placement of my mouth and my articulation, and spell out a word, letter by letter. ~Rishi Jena. Image has a colorful sky as the background with the quote above in a box.

I prefer nonspeaking. Much of what comes out of my mouth is unintentional. I am nonspeaking because speech is not how I communicate. ~Wyatt Dutton. Image has a colorful sky as the background with the quote above in a box.

I prefer non-speaking as I understand all language. Non-verbal suggests I don’t understand language and doesn’t represent how I love language. ~Matt Crittenden. Image has a colorful sky as the background with the quote above in a box.

I think that non-speaker tells a more accurate story about the person because that person simply uses a different way to communicate. Other non-speakers might think differently. -Mitchell Robins. Image has a colorful sky as the background with the quote above in a box.

I like to call myself nonspeaking because I can communicate words by spelling instead of speaking. Nonverbal implies I do not understand words. How can I communicate with words if I am nonverbal? -Philip Reyes. Image has a colorful sky as the background with the quote above in a box.

I am fully capable of speech, I just can’t let you know by “verbalizing” it out loud. Just because I need to use a letter board - or another form of Alternative Communication - to share my words with the world does not at all imply I not saying things worth hearing. -Ben Breaux. Image has a colorful sky as the background with the quote above in a box.

Non-verbal brings forth a slew of assumptions about me that are entirely inaccurate - including lack of understanding language, aggressive behaviour, lack of emotional intelligence, and cognitive impairment. I prefer non-speaking as it is a short description that encapsulates who I am more accurately. It also makes people stop and think instead of relying on what they know about me based on what they observe. -Jordyn Pallett. Image has a colorful sky as the background with the quote above in a box.

Being nonverbal means I have no words, which is as far from the truth as it can be. I have words, but I can't get them out with my voice. -Gregory Tino. Image has a colorful sky as the background with the quote above in a box.

The topic of what to call autistics powers the future momentum of our lives. I hate being called nonverbal. It shuts us out of the places we belong. It lowers the places we are in. The places we try to get to are very loud. They are kept for the people with loud voices. Let us be nonspeakers. That’s the gateway to who we are capable of being. ~Tejas Rao Sanker. Image has a colorful sky as the background with the quote above in a box.

I prefer to be called a nonspeaker. People may think I am not smart because I lack speech. I know better than anyone that Labels are not important. -Arun Chand. Image has a colorful sky as the background with the quote above in a box.

On Autistic Advocacy and Masking

In order to be seen, heard, and platformed as autistic advocates, we have to mask and make ourselves seem less autistic.

We have to mask to communicate that masking destroys our mental health and contributes to high rates of autistic suicide.

Thank you to the allies who accept our raw communication, even when it’s uncomfortable– even when it implies you need to change your mind or behavior.

NeuroClastic Link Dump

Slide 1: Articles from ABA survivors, psych experts, dog trainers, parents, and ABA employees. All of these articles are written by survivors of ABA, parents, former or current ABA providers, psychology experts, or dog trainers. Links are all in this Linktree.

Please don’t tell us we just don’t understand ABA. Please don’t separate yourself from the harms of ABA. Please don’t summarily dismiss us like we’re just ignorant ideologues. This is about 20% of the articles we have on the topic.

Slide 2: Alex, a teen ABA survivor, made three suicide attempts on the way to ABA therapy, including jumping out a window, jumping out of a car on the highway, and running from the ABA clinic into oncoming traffic.

On Hurling Myself Into Traffic to Get out of ABA Therapy

Slide 3: Terra Vance, NeuroClastic founder and former RBT, talks about how toilet training by behaviorists is abusive and why autistic children often have toileting and dressing delays.

On Autism, Getting Dressed, and Toileting

Slide 4: A career BCBA talks about how autistic people are right about ABA.

I am a disillusioned BCBA: Autistics are right about ABA

Slide 5: A former RBT talks about how she abused autistic children at work.

I Worked at an ABA Clinic. It was Abuse.

Slide 6: Cheyenne Thornton talks about how many behaviorists push that ABA is necessary for BIPOC autistics because they have to comply with police demands, and why that is not a valid argument for traumatizing children.

ABA for Creating Masking Black Autistics

Slide 7: Before knowing what ABA therapy is, NeuroClastic founder Terra Vance took a job (briefly) as a registered behavior tech. Her experience with the restraint training left her severely traumatized while her coworkers laughed and joked.

Becoming an ABA Registered Behavior Technician Before Knowing I Was Autistic: Part 1 – Restraint Training

Slide 8: Terra Vance talks about her experience with training to be a registered behavior therapist and Relias, the most common training program for RBTs.

Becoming an ABA RBT When I Thought I Was Neurotypical: Part 2 – The Certification Course

Slide 9: CL Lynch discusses how ABA is invisible abuse only autistic people can see (with videos)

Invisible Abuse: ABA and the things only autistic people can see

Slide 10: Part 1 of a series from Not an Autism Mom detailing the strategies used to coerce parents into believing they should enroll their kids in intensive interventions.

Not an Autism Mom’s Thoughts on ABA: Part One

Linktree for easy access.

The Judge Rotenberg Center Versus Communication Rights - #StopTheShock

Slide 1 Context: This slideshow is a short version of this longer article that discusses rapid prompting method (RPM) and spelling to communicate (S2C), two forms of communication access that are helpful for apraxic autistics and people with similar movement disorders.

If not electroshock at the Judge Rotenberg Center, then what? Try access to communication

Slide 2 Context: When nonspeakers previously believed to be intellectually disabled gain access to reliable communication, they are able to communicate their needs and how they can best be supported. It is never about torture.

#StopTheShock

Autistic Life Stages

While this trajectory doesn’t fit every autistic person exactly, most autistic people will find that they relate to much of this.

When autistic kids are young, they often delight adults with their memory, formal vocabulary, or some other skill that is ahead of peers. This skill, known as a “splinter skill,” often causes adults to see the child as having high potential.

Adults translate this high potential as pressure to remediate what skills develop more slowly compared to peers. Young autistic kids are often corrected and criticized and shaped more than their peers. The result is that autistic kids may internalize they are not smart. Others will believe they’re smart but lazy or spoiled.

By middle grades, autistic kids often start to catch up academically. They have learned to respond to pressure from peers to be more “normal” and to

At university, autistic people often seem to be thriving. Having the ability to set their own schedule, take classes that appeal to their intense passions, and more autonomy often means that, on paper, they are successful— unless they hit burnout.

If they don’t burn out in university, they get through feeling the intense trauma of trying to outrun burnout, a feeling akin to outrunning an avalanche while smiling and making eye contact and appearing fine.

Once an autistic person is an adult in the highly competitive job market, they often struggle to meet the highly social demands of their careers and are misunderstood. Their needs for accommodations are seen as dramatic or inconvenient, and they go on suffering under a mountain of invisible anxiety.

The ongoing trauma of trying so hard for so long with so many obstacles prevents autistic adults from being able to cope with the demands of a workplace. Their nervous systems have been overtaxed for decades, and they often have debilitating medical conditions caused by or exacerbated by stress.

Thanks to Dissent By Design for the rad art.

More on Autistic Life Stages…

These are 4 stages of life that far too many autistic and/or ADHD people, whether or not they even know they are neurodivergent, will experience.

While these are not concrete, and everyone’s experiences are different, these will ring true for many people.

For autistic and/or neurodivergent people — please let us know in the comments if this tracks at all with your experience.

Stage 1: Young children aren’t meeting developmental milestones on the same timeline as their peers.

There are often other milestones they reach early, which sets them up to be labeled as “gifted,” so their struggles are deemed as bad behavior or laziness instead of being understood as a totally normal trajectory of development for their neurotype.

But more often, their strengths are just invisible because there’s too much focus on what is misunderstood as in need of intervention.

Stage 2: By middle school, most kids have met most early childhood developmental milestones regardless of neurotype.

But neurodivergent kids have learned to overcompensate for things like dyspraxia, dyslexia, dyscalculia, agnosias, or executive functioning disability and can keep up enough to fly under the radar and get in trouble less often or be subjected to fewer “interventions.”

Stage 3: By high school and college, neurodivergent people have become so anxious about failing because they are trying so hard, have been policed, corrected, therapized, or micromanaged so much– while also having any accomplishments without needing accommodations praised and rewarded– that making a mistake or failing is too high risk.

They are carrying far more stress and working far harder than others around them, ignoring their needs and often hating themselves for any disability they have.

Stage 4: Often in the early 20s, but somewhere in adulthood, the neurodivergent person enters a catastrophic burnout that they may never recover from or may take years of struggle to recover.

Years spent trying to live without accommodations, to be “independent” (read: to pretend they can thrive without any supports), to be socially “normal,” to tolerate extreme sensory struggle, to push through the pain of complex PTSD and stress-mitigated chronic illness as if it didn’t exist have not been enough.

They have often tried so hard they are “over qualified,” but they don’t fit into the respectability politics of the professional world. This is even more difficult if someone is also dealing with racism or other forms of bigotry.

Neurodivergent people struggle so much to just stay alive that they have no time or energy for leisure, identity development, self care, or even basic necessities like keeping up with staying fed and having clean laundry.

Privilege may help prolong the inevitable, but not always.

People struggling so much in invisible ways are more vulnerable to developing debilitating and avoidable mental illness, self-medicating to the point of addiction, or falling into other unhealthy survival mechanisms.

All of this is avoidable. Being neurodivergent does not preclude someone from being an extremely valuable contributor to community, but that community needs to learn how to recognize, support, and accommodate for wiring differences instead of treating them like character flaws or moral failures.

You won’t get the answers for saving the world in a single social media post– so don’t ask, “What can we do about it?”

You can use social media to begin the journey of building your knowledge and learning how to build safer and more supportive communities. Learning is a lifelong journey.

Don’t believe we know what we’re talking about? Want an evidence base?

Check the comments — see how other neurodivergent people relate.

Intervention specialists: please have nuance and don’t misappropriate this post to be claiming “all therapies are bad” before heading to the comments.

Artwork by Kate Jones, our chief communications officer, of Kate Jones Illustration.

What Is The Difference Between ADHD And Autistic Focus?

This is just for fun. The differences between being autistic and/or ADHD are hard to map out. Many of us are both.

A tardigrade (affectionately known as a water bear) can survive in volcanoes and glaciers. They can survive in space, and theoretically even in a black hole.

This makes for the perfect analogy for autistic + ADHD focus. We won’t be coming up for air, water, sunlight, or food. Nothing can escape the warp of autistic + ADHDer passion.

•••••••••••••••

Tardigrade, rabbit, and rabbit hole donated by Kate Jones Illustration for world #apraxia month. 100% of tips or donations on this post will go to hiring #nonspeakers and apraxic autistics to create content for increasing acceptance and awareness.

Tips or donate to NeuroClastic here.

Autism Awareness Does Not Prevent Autistic Masking. Autistic Acceptance Does.

On Autistic Masking

Growing up #Autistic, maybe especially for those not diagnosed or self-identified until adulthood, is a life of constantly being sent the message that “you’re doing it wrong.”

Doing what wrong? Just about everything. You’re too loud, or too quiet. Your posture is wrong. You express joy with too much enthusiasm. You have an “attitude” or are “talking back” if you try to understand. You’re too “sensitive.”

Gender stereotypes, which most autistic people reject, are used to shame autistic children: man up, drama queen, grow a pair, that’s not lady-like, etc.

#Masking happens as a survival tactic. Autistic people are left with an eternal struggle to find themselves under layers and layers of masks.

These masks, in time, become emotional scar tissue that leaves us with an infinite struggle to find ourselves beneath the injuries sustained daily to our identity as society remediates and normalizes the individuality out of us and conditions us to live in masked silence and compliance, afraid to advocate for ourselves for fear of the social repercussions.

Cheyenne Thornton discusses ABA therapy and tackles the claim that Black and Brown autistic children need compliance training because they are at increased risk of police violence. Read the article here.

Special thanks to autistic illustrator Kate Jones Illustration/Dissent By Design for this amazing artwork and to Matthew Rushin and The Autistic OT for creative input on the messages society sends autistics from early childhood.

On Autistic Unmasking

The first graphic is a silhouette made of the phrases autistic people hear all the time — from therapists, teachers, parents, friends, employers, and partners — that push autistic people into a life of #Masking and living inauthentically.

The second graphic depicts which phrases and words are more conducive to a life lived with authenticity and emotional resilience.

Yes, there will always be people who will reject what is different, who believe children should be seen and not heard, who think that “normal” means superior– and that is why we will always have traumatized people trying to push the status quo into a more accepting and inclusive way of existing.

Accommodating for #autistics, #ADHDers, and all marginalized groups makes the world a safer, healthier, more vibrant place for ALL people. All people would benefit from an existence that is more concerned with what works and what is True over what is “popular” or “normal.”

This is what acceptance looks like.

Autistic Awareness + Autistic Acceptance

Collaboration over Competition in the Classroom - Supporting NeuroDiversity Inclusion

Competitive games and strategies are a source of inequity in school culture. Students with the most privilege– either innate, economic, financial, or social– are the ones who keep winning. When someone without privilege would win, like that autistic student who was not accepted by their peers who could read five novels in a day, then they became a target socially. Many children learn to survive socially by hiding their needs for support, cheating, or downplaying their strengths in a competitive environment.

Kids who can afford the coolest supplies or who had the most involved parents– or the parents who didn’t have to work three jobs– win art contests and science fairs. Kids with disability or without the “right” body type are excluded from athletics. Kids with accommodation needs are either inherently excluded or singled out as a target.

Competition as a culture becomes a way to maintain inequity. This is not to say that competition is always harmful, but to say that when it is the way the entire culture functions, children are trained to “know their place” in a hierarchy and to value the end result over the process of learning.

Competitions have rules. Those rules are structured to be accommodating to the majority. Those with advantages they didn’t earn continue to “win.”

Further, when we build hierarchies into our structures, we concrete the inequities already present in society: racism, classism, sexism, ableism, gender bias, and other social marginalization that already exists. It is subconscious maintenance of a social pecking order that in a school environment, most of the faculty have never experienced being at the bottom rung.

Collaboration as a cultural norm can foster a spirit of inclusion that is anti-bigotry and that prevents the shame, inequity, cheating, and even violence that can arise from competition. Western societies use “competitive advantage” like a buzzword that is innovative, but we need to ask ourselves what value competition has in increasing meaningful learning.

Special thanks to Kate Jones Illustration for doing the amazing graphic design work!

Supporting NeuroDivergent Self-Determination

#ActuallyAutistic and otherwise #Neurodivergent children deserve #Inclusion, and that means making adjustments to meet the needs that are accommodated in most children because society is structured to accommodate the neurological majority.

But because neurodivergent children often develop on a different timeline from most children, their access needs are often overridden by intrusive therapies and by an education that does not support their individual needs.

Self-determination is the ability to have reasonable control over one’s life without intrusive, aggressive, controlling, or oppressive forces inserting too much dominance over someone’s developmental trajectory.

Almost all information about healthy development is based on what works for the neurological majority. Even the pop-psychology graphics with feel-good messaging contain subtle traps for neurodivergent children because they are written with the perception that being neurodivergent is unhealthy.

This is where we diverge from #AutismAwareness and move into #AutisticAcceptance. To accept neurodivergent children, we must accept that their needs are different. Neurodivergent children need to have their access to self-determination, autonomy, and dignity reinforced and protected according to their developmental needs and not the needs of the majority.

HUGE shout out to Kate Jones Illustration for the artwork!!

Auditory Processing Disorder (APD)

Auditory Processing Disorder (APD) is not hearing loss, but it is hearing impairment. People with APD may be able to hear extremely well with regards to volume, but their brains have difficulty processing sound.

Many people go for years or decades not realizing they have APD, and they have self-accommodated by reading lips, using captions, and managing their soundscape to avoid background noise. They may socially isolate or pass on activities that take place in noisy environments because the background sound makes staying present in conversations nearly impossible.

Auditory processing disorder is common in people with NeuroDivergence, like Autistic people, ADHDers, and dyslexics. It’s also common in acquired neurodivergence, like traumatic brain injury.

People with APD are working extremely hard to keep up in classrooms and social settings and can be overwhelmed or distressed by the difficulty of keeping up with noise. They are often mistaken as learning disabled and underestimated in the classroom because their needs aren’t met. Humming fluorescent lights, air conditioners, lawn mowers in the distance, and similar sounds that most people filter can make it impossible for people with APD to stay in the conversation. Like all sensory processing, APD affects people more when they are overwhelmed, overstimulated, and tired. This slideshow is an introduction to APD that is intended to introduce APD for people who are unfamiliar with it.

What is Rejection Sensitive Dysphoria?

Rejection sensitive dysphoria (RSD) is a phenomenon that can be associated with #neurodivergence, especially #ADHD, but also can be associated with several mental health diagnoses, trauma, or a history of being invalidated.

RSD builds over time, making the experience one of accumulated rejections. It’s not a disorder or diagnosis, but a phenomenon that happens to people with a neurological predisposition or a long (complex) history of painful rejections.

RSD can be experienced when someone has been rejected or even when they fear that a rejection is likely— like after making a request or sending an email.

#RSD is more than just experiencing sadness over a rejection, but can be a visceral, full-body trauma response that can lead to meltdowns, panic attacks, chest tightness, increased heart rate, impulsive decisions, and difficulty breathing.

When people experience #RejectionSensitivity, it can seem to be over minor negative feedback, like that a delicious appetizer needed a pinch more salt, or a wildy-positive performance review that had one minor “area of improvement,” like recommending filing reports alphabetically instead of chronologically.

People who experience #RSD may withdraw or isolate themselves out of fear of rejection or may cut ties after a minor rejection.

Some people prefer the phrase Rejection Sensitivity. Be sure to read the article for more information.

These graphics were created by autistic graphic designer and illustrator Kate Jones Illustration or Dissent by Design.

Take 5 Approach For Safe Communication

Introducing the Take 5 approach to accommodating and empowering neurodivergent clients in a therapeutic setting.

If you’re a therapist, physician, guidance counselor, social worker, support service worker, or you serve #autistic or otherwise #neurodivergent clients, the Take 5 approach can help your clients who may be unreliably speaking or have difficulty with expressing themselves with verbal or written communication.

People who have experienced trauma, even if they are not autistic, may also find the Take 5 system helpful.

If you’re autistic, you can print this and share it with your providers. You can find this as a printable PDF document at the button below.

Parents, friends, teachers, and loved ones can adapt the Take 5 approach for classrooms, home settings, or when out enjoying the world.

You may share, print, adapt, or reproduce this resource and use it however you find helpful as long as it remains free for use. Please leave the site links intact so that others can access this and other free resources on our site.

Here's Why Most Autistic People Hate The Puzzle Piece Symbol

People often are surprised to find out why the majority of the Autistic community absolutely hate the puzzle piece and many even feel it is a hate symbol.

While the puzzle may be significant and have special meaning for some individuals, using it as an organization or “brand recognition” for autism causes harm to our community, especially adult Autistics who fail to see themselves in the kindergarten imagery.

No one should be shamed for having a personal connection to the puzzle piece, but when you’re claiming to want to spread awareness and acceptance for the Autistic comUNITY, then best practice is to follow the community’s wishes and listen to what they need from allies.

You do not want your children to experience what we experience as adults. We’re trying to help you (and them) avoid the pain and the needless suffering we experience.

Why the Autistic Community Needs You to Use Identity-First Language

Words matter and language has meaning with real life consequences. Being autistic is how we exist. We are not a whole person plus autism (or minus autism).

Autistic is our neurotype. It is how we exist, as a neurological minority. Person-first language is respectful when a condition does not define someone’s core self, like asthma or diabetes. But when a term is an inseparable part of someone’s identity, then it should be embraced as an adjective describing that person instead of an afterthought.

We say “Jewish person” instead of “Person with Judaism,” Black person instead of “person with Blackness,” and “gay person” instead of “person with gayness.” These identities are not negative or shameful, and being a minority is not an inherently negative trait. Autistic people, like other minority identities, need to be accepted as existing in harmony with our identity and not separating ourselves from it.

Of course, use the preferences of individuals if they differ from the majority, but most of us (93%) prefer that you use “autistic” instead of “with autism.” Using respectful language is more than just semantics. We need you to have these #UncomfortableConversations with people to help us change the status quo and claim the narrative about our way of existing.

On Why Autistic People Don't Like It When Parents Call Themselves Autism Parents

By request: why autistic people do not like the phrase “autism parents.”

Note: these are not the positions of every autistic, but they do represent the majority of the community, especially of advocates who the bar of progress.

We don’t hate you for using that language, and you are free to identify however you want, but there’s a good reason to consider changing your words.

One day, your child will be an adult, and it’s likely they will not appreciate that you called yourself an autism parent. It seems as if you parent a condition, not a human. It seems as if you built an identity around the ways your child is different from other kids and how that makes your life different as a parent.

Your life will be different. All lives are. You may have extra support needs as a parent because your child has high support needs. But can you imagine if your child made an identity out of your vulnerabilities? “I’m a divorce son.” “I’m a high functioning alcoholism daughter.” “I love someone with irritable bowel syndrome.”

At one point in recent history, the stigma around autism was so extreme, parents who were proud “autism parents” were progressive and courageous, boldly rejecting the shame associated with autism. Thankfully, progress has been made.

We are at a new stage of acceptance, and we NEED YOU. We can’t get very far without parent allies. We want to push progress to the next level.

You could try these:

Parent of an Autistic child (if your child consents and wants that to be public)
This family embraces Neurodiversity
Neurodiverse family
Autistic acceptance
Autistic rights are human rights
Empower Autistic self-advocacy
Listen to Autistic people
Support Autistic-led Organizations
Aspiring Autistic Ally
Black Autistic lives matter

All of the above messages imply that Autistic is a neurotype, not a disease or burden. They all center Autistic autonomy and self-determination.

You want to work with Autistic advocates to build a world where your children are accepted & not seen as charity, a burden, or adult children. This can help us get there faster.

The World of Actually Autistic Culture

Autism and Addiction

#Addiction is a serious issue that can be deadly for #Autistic people. Emergent Divergence confronts the issue and asks why no one is talking about it.

The Autistic Community and the Autism Community. What's the Difference?

A slideshow presentation explaining the difference between the “autistic community” and the “autism community,” and why language and messaging matter to affirm the rights, dignity, autonomy, and self-determination of autistic people. Autistic advocates have to fight to be heard. They are often silenced, ignored, and erased, then stereotyped as aggressive or rude when they ask to be heard. Using respectful language and centering autistic voices helps ALL people in society and makes for a safer, healthier, and more human perspective of autistic individuals. While we have preferences as a community about language used to talk about autistic people, we want to emphasize that every individual has the right to choose how they are referenced. No autistic person should be shamed for their choices, but autistic advocates ask that those who want to learn and be allies use the language preferences of the majority for the reasons specified. We know that you were taught that person-first language was more respectful, but we are asking you– like the deaf community– to use identity first language. Thank you to everyone out there who is listening and learning. We cannot make progress without you.

Valentines: Autistic Edition!

What is Autism? The Spectrum Doesn't Mean What You Think It Means

What Does It Mean to Be Autistic?

Taking from C.L. Lynch’s article about what “the spectrum” means and adding a simple analogy from the neuroscience, we look at what it means to be #ActuallyAutistic.

10 Facts About Bullying

Let’s talk about bullying.

Bullying in the moment is difficult to address. Bullies in one situation are often bullied in another. Sometimes people aren’t aware of their own role in participating in bullying.

Whenever someone attempts to stop bullying by punishing the bully, this gesture usually backfires. It often leads to more bullying, sometimes from the authority figure trying to intervene, and sometimes in the form of retaliation.

The most effective way to stop bullying and the safest way for everyone is to change the culture. Big picture, Greater Good visionary change.

In a culture of competition, bullying will always happen and will always be rewarded.

In a culture of cooperation, wherein members of a social ecosystem look out for each other and value the success of each person, then bullying rarely happens.

The reason that bullying campaigns fail is because bullying is only addressed after it’s happened. Bullying is too complicated and has too many layers of social consequence to address with any simple solution.

Instead, we need to create a safer society with the shared values of tolerance, acceptance, support, and interdependence.

These gestures are small ways to make a collective large change. This is a challenge with no hashtags. Just examine your interactions and reflect, consider if your actions have caused undue harm to someone/people who didn’t have due process to defend themselves.

We want people to grow, and that will never happen if we block their Light.

Be the light and not the shade.

NeuroInclusive Stories

The Spiky Profile of Autism - NI Story For Adults

A brain is much more complex than a Rubik’s cube, and there are 43 quintillion ways a Rubik’s cube can be configured. Understanding that potential for same-but-different can give you a glimpse into the complexity and diversity of human brains.

This slideshow does not illustrate every nuance of autistic neurology. It’s simply one oversimplified analogy to illustrate autistic “spiky profiles.”
When we say this world is not designed for autistics, what we mean is that this world is not designed to accommodate for diversity of thought, diversity of movement, diversity of communication, and diversity of sensory experiences.

This is especially true in more independent, less collectivist countries like the United States because people are expected to perform every role and generalize every skill to every environment so as not to be a “burden.” For the sake of economy, almost everything, even learning materials, are mass-produced and standardized.

As a parent, teacher, therapist, or supervisor, are you being given the information, insight, and freedom you need to come up with innovative ways to accommodate people with spiky profiles?

Or are you being tasked with using the same approach for all people and told that accommodation means making all people learn and perform in the same ways?

That’s like being asked to force the same amount of traffic up a rocky footpath while ignoring the potential of a wide-open 14-lane superhighway. It’s inefficient for no good reason.

At some point, the “it’s for their own good because others won’t accept them if they’re too different” scam needs to be called what it is. That model just causes needless stress, is expensive and burdensome for everyone, and serves no one but the vendors selling mass-produced garbage.
You can start down the road to a better tomorrow by cutting out sources that are mostly just noise and empty promises. If they are not giving you the knowledge, insight, and tools you need to build something that works for you and your loved ones’ unique circumstances and brains, then they don’t deserve your time.

Autistic Friendship

This week, we have another NeuroInclusive story to celebrate the publication of another children’s picture book written by an autistic author, mother, and speech language pathologist, @author.meg.raby.

Meg’s book, My Brother Otto and the Birthday Party, features Otto Crow, a nonspeaking autistic crow, his sister Piper, and his best friend, Ruthie.

Otto is an AAC user who communicates by tablet. This book is the second in a series featuring the Crow siblings.
And, we love this book! It’s written from the perspective of Piper, Otto’s sister, who is growing and understanding her brother in the context of a loving family.

As with real families, the Crow family has grown in their understanding and acceptance since the first book. Otto is better understood and accommodated, and he is excellent at accommodating and understanding himself.

He’s an excellent best friend to Ruthie, who is also Autistic.

The book is written from Piper’s perspective. She kind of narrates her thoughts as she interacts with the world, recognizing her brother thinks and does things differently. She knows when he needs to step away from the party and spend some time alone watching the bubble machine that he needs a sensory break. She tells the readers that Ruthie needs to look away when she talks to someone to be able to focus.

And Otto is a rockstar in this book with a strong sense of identity. He knows who he is and does what he needs to do to be well regulated. He is so thoughtful, too, bringing his friend ear defenders when it’s getting loud and choosing the most perfect gift for his friend based on her SpIns (special interests).

This NeuroInclusive story is written to help non-autistic kids understand ways Autistic kids might do things differently and to help Autistic kids understand themselves.

For a free printable PDF, you can click here.

And for Meg Raby’s book on Amazon, click here.

Apraxia and NonSpeakers

Well, it’s official, Gregory C Tino‘s new children’s book is out, and it’s AMAZING!

Terra Vance here. My daughter says it’s her new favorite, and she has an unruly body sometimes, too!

With Gregory’s permission, we took some illustrations from his book and made a NeuroInclusive story you can use as a companion to teach about apraxia.

For a free printable PDF, you can use this link.

86% of Autistic people have clinically significant apraxia, a movement disorder that impacts motor planning (not motor ability). Apraxia can impact a person in many ways, but for some people it can prevent speech or make speech unreliable.

Unreliable speech is not the same as mutism.

Mutism happens when a person who can speak reliably cannot always speak in front of others, and they may go years without saying a word or may only struggle when overwhelmed or in certain situations.

Unreliable speech is different. A person may be able to say words, but it’s not what they want to say. They may want to say, “Nice to meet you,” but instead they recite a movie line or yell a word they didn’t want to say, like “Hallelujah!” or “Sit down!”

People with unreliable speech who cannot use speech to fluently communicate are a part of the Nonspeaking community.

Even focusing the eyes to look in the right direction can be hard, so reading books or using AAC devices can be a struggle.

But when autistic nonspeakers do get reliable communication, they let us know what life is like for them. Which brings us to Gregory’s amazing book, The Autistic Boy in the Unruly Body.

You can get the book from Amazon, here.

NeuroClastic would love to be tagged in any posts you make about this wonderful book!

My Brain Is Autistic

This NeuroInclusive story is for kids and adults and helps to understand how autistic brains are different.

What autistic kids and people around them never get the luxury to learn is exactly how they are different and what this means.

This is obviously an oversimplified analogy of brains, but it is accurate to the #neuroscience. #Autistic brains (usually/often) have less connectivity between left and right hemispheres, then either more or less connectivity to various sensory systems. Also, those systems themselves may be more or less developed. 87% of autistic people have a degree of #apraxia or #dyspraxia, which means that there’s atypical connectivity in the areas of the brain responsible for movement and coordination. This is why many nonspeakers cannot speak or speak reliably.

Basically, most people’s brains are like a bunch of evenly distributed two-lane roads, but autistic people have 14-lane superhighways, labyrinths like the stuff of Greek mythology, toll booths, mountainous hiking trails, and rickety foot bridges.

We may have to run an internal obstacle course every time we do a “brain errand,” or those tasks that become automated routines for most people.

We are in our heads with the urgency of Indiana Jones trying to navigate and keep up with your world and what is easy for everyone else. We spend so much time breaking our necks trying to do what everyone else is doing, the way they’re doing it, that we never get to learn what we can do if we open up that superhighway and do what we’re wired to do best– which varies depending on the person’s brain map.

NeuroInclusive is a word coined by NeuroClastic that is used to describe spaces, activities, and programs that are intentionally, actively designed to foster inclusion for people who are from different neurotypes— like Autistics, ADHDers, PDAers, dyslexics, etc.

Note: Thank you to everyone who credits NeuroClastic when using the term “NeuroInclusive” in your work and posts.

Find image descriptions here.

Written by Terra Vance with art contributions from Kate Jones.

Our viral NeuroInclusive story, My Brain is Autistic, has been translated to Spanish by Autismo: Mi cerebro atípico. Please share this anywhere it may be helpful for Spanish-speaking, -learning, or bi/multilingual families.

The Blue Grumpkin - A NeuroInclusive Story for Parents

If people are telling you to get the blue pumpkin bucket for your autistic child, please consider not doing that.

Autistic kids and adults deserve the right to decide if and how to share their neurotype with others.

Many autistic people are happy with being autistic, but NOT with the picture of autism others have in their minds that erases and reduces their identity down to a list of symptoms.

Consider passing on the blue pumpkins and any “blue autism” fads. #Autism as a brand or trend is never going to be a respectful or helpful to #ActuallyAutistic people.

Let autistic kids captain their own identities.

Julius the Grumpkin illustrated by Kate Jones Illustration on Facebook and Dissent By Design on Instagram.

A blue Halloween pumpkin bucket (hereinafter, Julius) with an expression of resigned existential annoyance sits in the foreground. In the background is a mountain under a full moon at night. Image reads: The Blue Grumpkin. @NeuroClastic

A fall scene featuring a park bench and lots of fall colors. There’s an owl, squirrel, and fox in the background. Caption reads: Autumn was a season known for its warm color palette— reds, browns, oranges, and yellows. @NeuroClastic

Julius sits in a Halloween scene with a silhouette of a creepy house in the background. He is the one blue pumpkin in a big patch of orange pumpkins. Image reads: And then there was Julius, the blue grumpkin… @NeuroClastic

Julius sits in front of a cauldron looking his usual sullen self. There’s a night scene with spider webs and a full moon in the background. Image reads: Julius didn’t mind being different. @NeuroClastic

Julius is in a Halloween-decorated yard looking out of place among all the orange. Image reads: But he did mind having his difference put on display with all the orange pumpkins. @NeuroClastic

Kids in costumes are lined up on the sidewalk with their orange pumpkin bags. Julius sits there, looking out of place again. His blue color stands out. Image reads: Julius felt like Halloween should have been his night. He could be his natural pumpkin bucket self while everyone else wore a costume. @NeuroClastic

A polaroid picture taped to a page features a family photo with two orange pumpkins and Julius. Image reads: Julius wanted to know why his mom made him blue when his sister got to stay orange. She said she wanted everyone to know he was “special.“ @NeuroClastic

Julius sits with his friend, an orange pumpkin bucket wearing a vampire cape and overflowing with candy. Julius has toothbrushes sticking out of the top. A talk bubble reads: One lady gave me a bottle of probiotics. Everyone thinks I have allergies. Image reads: Last year, Julius’s best friend got loads of candy. Julius got 32 plastic spider rings, three toothbrushes, a yo-yo that didn’t work, and an existential crisis. @NeuroClastic

Three menacing looking orange jack-o-lanterns with big bully energy are sitting in the background of a dark Halloween scene, laughing. Julius sits in the foreground. Image reads: Julius was less-than-thrilled about the prospect of running into his classmates from school. Being different was a hazard, and wearing his difference made it downright dangerous. @NeuroClastic

Two people, presumably a husband and wife, stand smiling, handing out candy on their porch. Their house is elaborately decorated with orange pumpkin lantern string lights. A chat bubble from the woman reads: "Hey little buddy. Why are you so blue? That's unusual..." Julius, sitting on the bottom left corner, has a thought bubble emerging from him that reads: "This is an ironic attempt to relieve me of the burden of communication." @NeuroClastic

A Tale of Two Autistic Little Girls - A NeuroInclusive Story for Parents

People always ask the wrong questions about their autistic children. That’s not their fault. They don’t know which questions to ask.

This is the story of two autistic little girls who both had wonderful parents.

People always ask, “If not ABA therapy, then what?”

That’s an impossible question to answer because the answer is different for every child. It’s hard to explain when parents are convinced that early diagnosis is critical because early interventions are critical.

Yes, they are. For the parents.

Parents need an intervention when their children are diagnosed, and not because they are bad parents. They’re usually wonderful parents.

They need an intervention because they are misinformed and their instincts may fail them. They may become so wrapped up in remediating what their children can’t do that they accidentally teach their kids that they’re broken.

This story of two autistic little girls is based on two real autistic children who had wonderful parents.

What do you think is Callie’s future?

What do you think is Keisha’s future?

What parent showed awareness?

What parent showed acceptance?

What does this illustrate for you?

Weavers and Concluders

For several years, we have been developing a theory of two communication types: Weavers and Concluders. When we had access to the book, Lulu is a Rhinoceros, it provided the perfect context to introduce these two styles of communication.

Most people are Concluders, which means they communicate to make a point; however, some people are Weavers.

Lulu is a Weaver, or someone who communicates by throwing out facts and hoping their conversational partner will reciprocate with their own lived experience. Because most people aren’t Weavers, though, they don’t understand Lulu’s conversational style or how she creates meaning in communication.

Weavers are pattern communicators, and communication between Weavers is the building of a pattern together. They avoid direct questions outside of asking for clarity or for factual information as this could be seen as trying to coerce the other person’s pattern.

When Lulu tries to engage in Weaver communication, she experiences a series of rejections. Finally, she runs into another weaver and their communication reveals beautiful patterns in their experience that can serve as the foundation for a beautiful emerging friendship.

Lulu is a Rhinoceros is a book by celebrity activist Jason Flom and his daughter, Allison Flom. Special thanks to the authors for allowing us to use their story to spread acceptance and to Kate Jones Illustration
for the illustration assists. A more complete version of this article that explains Weaver and Concluder conversation in more depth is here.

Lulu is a Rhinoceros is currently on Amazon at a steep discount.

Are you a Weaver or a Concluder?

I Am Autistic!

This NeuroInclusive Story is based off two of three children’s books we are featuring in the month of April, Lulu is a Rhinoceros by Jason Flom and Allison Flom, and My Brother Otto by Meg Raby.

Lulu is a picture book about a Rhinoceros that looks like a bulldog. She is remarkable for her individuality, self-determination, and emotional resilience. Despite being rejected multiple times and a series of failed experiments to find the perfect rhino horn, Lulu never stops being true to herself.

An homage to celebrity activist Jason Flom’s service dog, Lulu is a perfect companion to introduce kids to living an authentic life, to staying true to themselves, and to finding a path to interdependent and meaningful friendships. This would be a great entry to have conversations about gender identity, neurodivergence, or any other invisible marginalized identity.

Otto is a picture book about a #ActuallyAutistic crow who is #nonspeaking and uses an AAC device. His family accept him and accommodate his differences without any coercion or attempts to force him to be more normal.

Like Lulu, Otto knows himself and is determined to live authentically. He is a sensory seeker who loves to line up his toys, smoosh himself into tight spaces, spin around, and surround himself with his favorite color, yellow. He loves his yellow pipe cleaners!

This NeuroInclusive Story is written to help you start conversations about #AutisticAcceptance. Link to both books, which are currently on deep discount, is in our page bio. There are also autistic-written reviews in the link. Alt text added to images.

Stay tuned for lesson plans and activities from both books all week! Special thanks to Dissent by Design for all the graphic design and illustration assists, Trevor Byrd for creative input, The Autistic OT for professional consultation, and to the authors for allowing us to use these books to spread acceptance.

Stimming Is Fun

Otto Crow is a #nonspeaking autistic crow who uses his AAC device to communicate. He loves to #stim!

Stimming is short for self-stimulatory behavior. Everyone #stims, but some people do it more often than others. For people with very excited nervous systems, like many people with disabilities and people who have experienced trauma, they may stim more frequently or in more obvious ways. Stims can be body movements or thought patterns that we repeat to help us keep ourselves regulated.

All month, we are going to bring you materials from Autistic content creators with the goal of creating more #AutisticAcceptance, awareness, appreciation, and inclusion for autistic children and adults.

We will have lesson plans, resources, and activities that can be used at home, school, or in therapeutic settings, beautiful infographics, NeuroInclusive stories, printables, and great articles that will, as always, be completely ad-free, login-free, and free of cost.

There are three children’s books that our collective is focusing on in the month of April to help us spread messages of autistic acceptance: My Brother Otto by Meg Raby, Lulu Is a Rhinoceros by Jason Flom and Allison Flom, and Melt Like Ice Cream by The Autistic OT Sarah Selvaggi Hernandez and Tessa Newell.

We asked the publisher if they would consider discounting My Brother Otto for April, and they’re offering it for half off for the whole month. You can find it at that price here.

This NeuroInclusive story is for all people to help introduce stimming as the fun and healthy self-regulatory strategy that it is. We want to normalize #Stimming All month, we’ll be providing more in-depth information on stimming and other topics important to #AutisticAcceptance.

Special thanks to Trevor Byrd, #nonspeaking teen writer, for creative input, illustrator Dissent by Design and Kate Jones Illustration for all the design and illustration assists, and Meg Raby for letting us use Otto to tell this story.

Arguing or Joint Troubleshooting? A NeuroInclusive Story For Adults

Are you a JOINT TROUBLESHOOTER?

A couple weeks ago, we ran a social experiment with a scenario about a fictional couple named “Betsy” and “Andrew.” We asked readers to respond. As a reminder, here is the transcript of that argument:

Betsy & Andrew

Betsy plans to cook soon as has been paying bills when Andrew walks into the kitchen. She asks Andrew to start the dishwasher.
Then this happens.

Andrew: It’s not full yet. I’ll run it after dinner.
Betsy: I need the plates for dinner. Just run it.
Andrew: I’ll wash the plates in the sink.
Betsy: I also need the spatula and the serving spoons.
Andrew: I’ll wash those, too.
Betsy: Why do you have to argue every little thing? I could have done it myself by the time it took to beg you to do one simple thing to contribute around here. I don’t want to create a list of what dishes I’ll need.
Andrew: Do you know how many gallons of water a dishwasher uses per load?
Betsy: There you go again! Do you know how exhausting you are? You argue about everything under the sun.
Andrew: I’m not arguing!
Betsy: You are arguing about not arguing! What is wrong with you? You can’t even admit what you’re doing right now. You only think about yourself.

The responses were extremely interesting– far beyond what we expected. Some people believed that Betsy was autistic and was overwhelmed. Some believed Andrew was autistic and was communicating literally. The person who was believed to be autistic was the one who was generally given grace for their communication style.

One thing that was evident and agreed upon across the board was Betsy and Andrew had poor communication and needed help supporting each other.

When the scenario was written, it was based off of a real incident between an autistic man and a non-autistic roommate, and Andrew was the fictional version of the man and Betsy was the fictional version of the woman. The scenario was taken from a woman complaining about how her roommate always wants to argue and was looking for advice.

There is a communication difference we are going to call “Joint Troubleshooting.” While there are neurological reasons for why many (but not all) neurodivergent people communicate this way, for now, we will just focus on the reality that this is a common way that NeuroDivergent individuals (including some non-autistic ADHDers and other forms of neurodivergence) and neurotypical communicators often clash.

Connection Through Play - A NeuroInclusive Story For Parents

Room For Us All

Social Stories are often used (misused) to make disabled kids feel like they are at fault for their own social exclusion. This wasn’t the intention of Carol Gray, who came up with the concept. Now people call generic stories that shame autistic kids “social stories,” and it’s time to shift the focus towards changing the culture, not the children.

NeuroInclusive Stories encourage all kids to embrace diversity.

Check out this amazing young #ActuallyAutistic reader who is reading our #NeuroInclusive story to help spread acceptance for #AutisticAcceptanceMonth here! Excellent work from a young advocate in Ireland!

Chatting and Infodumping

We’ve been taught that there are ways to communicate, demonstrate empathy, and show relatedness, and that to do so differently is to do it “wrong.” Autistic communication is often discussed as if it is lacking in empathy, a moral failing that results in failure to connect. But communicating differently should be embraced. There is more than one way to relate to each other, and those who relate differently shouldn’t be sent the message that they need to change in order to deserve friendship and mutual respect….

Social stories are often used with Autistic kids to force them into behaving and even thinking and feeling like they are non-autistic. These social stories cause children to feel ashamed of the way that they naturally are and like adults will only be proud of them if they change for others.

It’s another way to exclude Autistic children and cause them to internalize messages of shame and inferiority.

So, here’s a social story for ALL kids, written by an #ActuallyAutistic former counselor and English teacher— because being in the majority does not make someone “right.” All kids need to learn to embrace differences and see the value of inclusion.

Others

What is NeuroClastic?

NeuroClastic is a 501(c)3 nonprofit with autistic leadership. We embrace and value diversity of thought, of neurology, and of identity.

The mainstream autism industry has failed parents, educators, and providers, and has caused trauma to millions of autistic children.

We are here to break that cycle. We don’t want or need legislation, therapies, training programs, products, or services created for us without our input. Autism is not an industry and Autistic people are not products or charity cases. Disempowering Autistic children with tragedy narratives built to sell products and inspire pity has set the stage for generations of Autistic adults who are undiagnosed, living behind a mask, under-accommodated, underestimated, and disenfranchised from society.

Autistic people have the highest suicide rates of any demographic. We know how to reverse this trend.

We are here to help. We are here to support parents and providers with tools to understand Autistic minds and learn how to connect and maximize the joy and self-determination of every human, Autistic or not.

We aren’t your mother’s autism charity. We are charitable, and our volunteers provide you with ad-free resources to improve your self-knowledge (for autistics) and your approach to connecting and understanding the Autistic neurotype (for all people).

We know you want to help. We will show you how. Please consider putting lift under the wings of our movement so we can break things and build something beautiful that is ours.

Person-First vs Identity First Language & Mild, Moderate and Severe Autism - A Visual Guide

This is here to illustrate in a comedic way that functioning labels are based on how obvious our autistic traits are to others. These four memes are one person. With “autistic person,” it is simply a person who is existing while autistic. The function labels are based on how obvious being autistic is to a non-autistic person.

Essentially, function labels are projected on autistic people based on superficial understanding. The person is the same, but what others see becomes more obvious.

We used the puzzle because that’s what others put on us, and it’s like the “brand” of autism and how much others want to make an exhibition out of us or reduce our humanity to how “mild” or “severe” autism is.

Selective Mutism - Just Because Somebody Can’t Speak, Doesn’t Mean They Don’t Have A Voice

Bekki Semanova is #ActuallyAutistic and has pronounced #SelectiveMutism. Her friend, Ellie Rebarbar, makes sure as an ally that Bekki is included and helps fight stigma and misinformation. Click the title to read the article.

My Brother Otto

My Brother Otto is a story of a crow family with a sibling pair of Piper and her little brother, Otto, an autistic nonspeaker. Otto loves the color yellow, deep interroceptive pressure, sensory seeking by spinning, covering his ears, and swinging. His family is happy to accommodate and accept his differences like his love of bear hugs and his sensory sensitivities with clothes.

New Shirts #RedInstead

New shirt design ahead of April. Shout-out to Iqra for the art! Shirt is red with an infinity symbol made from words that read “Red Instead” in Black, white, and grey text.

The reason that many people in the autistic community use #RedInstead as a counter to the “light it up blue” campaign used by Autism Speaks.

Many autistic adults consider Autism Speaks to be harmful and working against our community, giving unhelpful information to parents and providers.

We ask that people donate to autistic-led organizations— like NeuroClastic and Divergent Minds — during April, share autistic content, hire autistic people, and buy from autistic businesses in April.

Link to buy here.