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Table of Contents
Slideshows
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.
#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.
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.
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.](https://neuroclastic.com/wp-content/uploads/2022/10/1.jpeg)
Is The Neurodiversity Paradigm Compatible With Evidence Based Practice?
![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.](https://neuroclastic.com/wp-content/uploads/2022/10/5.png)
Not All Behavior Is Communication
Disinhibition Part 1 | Overview
- 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
Disinhibition Part 2 | Apraxic NonSpeakers And Communication Rights
![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](https://neuroclastic.com/wp-content/uploads/2022/03/10.jpg)
Disinhibition Part 3 | Finding Reliable Communication For People With Motor Disinhibition
Disinhibition Part 4 | Types of Intrusive Thoughts And Compulsions
An Open Call To Intervention Therapy Providers
Parenting Autistic Kids | On Healthy Touch
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.
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.
![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. […]](https://neuroclastic.com/wp-content/uploads/2021/11/3-1.jpg)
![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. [...]](https://neuroclastic.com/wp-content/uploads/2021/11/4-1.jpg)
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.
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.
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.
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.
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!
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)
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.
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.
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.
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.
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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.
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.
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.
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 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.
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
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?
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
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!
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.
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.
