Thank You, Autism Speaks: You accidentally proved me right about Autistic instincts

As a self-aware Autistic parent to an Autistic child, we have been so attuned to each other since the day she was born. But— I notice that the instincts of non-autistic family members failed them with my child no matter how hard they tried.

They didn’t know how to read her and would make things worse. Much of this same dynamic played out with my parents and grandparents. My mom did not understand me at the level of instinct, and no matter how much we loved each other, we were forever at odds. I was perceived as difficult, defiant, and lazy.

But my favorite thing in the world was to be with my maternal grandparents. All I wanted to do was do work with my grandfather. I didn’t care about vacations or material objects or toys or playgrounds. Given the choice, I would have spent time with him over same-age peers.

I just wanted to be his sidekick and do the work he did, and he loved that. I accompanied him to his actual job and performed very adult tasks with him, like testing the water at the water plant every day for purity and making sure everything was operating as it should.

Everyone else was terrified of him, and that’s a little bit funny, but I found him to be so warm and affectionate. He only lived two houses away, and I spent every possible minute I could eke out with him.

Now, it’s a little bit funny that many people find me terrifying, but my child thinks I— and her autistic dad— are the warmest and most loving people ever. Our instincts are not at odds.

Autism is NOT a series of deficits. It’s a different identity with different values and different instincts.

Regardless of anyone else’s definitions, autism is not a series of medical conditions, even though those things occur among us more frequently. It’s not what happens after a bout of meningitis. It’s not epigenetic.

Sensory differences are only incidental and not what autism is.

Autism is not an umbrella term for genetic conditions. It’s not meltdowns. It’s not introversion.

For more information, check these out:

Autism Speaks Accidentally Gets It Right

Autism Speaks is an organization that most autistic people hate. In fact, it’s regarded as a hate group by many in our community.

I mean, I hate it, too. They really need to publicly apologize for all the harm they cause and have caused, then spend the rest of their time making reparations. I’ll link more information about why at the bottom of this article.

Apparently, Autism Speaks is now running prime-time ads about a free autism screening tool for toddlers. I’ll link that below, too.

And they accidentally proved that we aren’t broken or lagging with skills, we just have different instincts.

A few days ago, I Tweeted this:

The next day, my friend, Asiatu, sent me a text:

Asiatu messaged me a screenshot of a Tweet in a similar vein to the one I had made the previous day.

Here’s a link to Asiatu‘s Tweet:

I think Asiatu is exactly right, but they are really still on a path of unpacking all that abuse and invalidation. Their reliance on words is not a result of abuse, which would make it a pathology. We are just learning who we are because we are just connecting to community. It’s actually just Asiatu acknowledging their instincts, but those instincts aren’t broken or the result of trauma.

We were born that way!

That’s why we are so on the same page (not just with this, but all kinds of things). In many of my friendships with Autistic people, we are on a parallel journey to know ourselves as individuals and to know ourselves as members of a community.

When I realized that we more instinctively were looking for processing in others as opposed to looking for social and emotional communication, that’s me having done A LOT of work to get in touch with my autistic nature.

And, I’m a parent of an autistic who gets to experience this in real time. So, as an activist and autistic nonprofit founder, and as a parent and spouse of an autistic, I can really get a great sampling of autistic ways of being in my life.

This particular epiphany hit me in a meeting that I recently had with our board chair, our chief communication officer, and some people in leadership roles from another organization that works with children with disabilities.

I felt myself so instantly and viscerally attracted to their director— not in a romantic sense, but in that “like recognize like” sense. She said something about how the more she spent time around neurodivergent children, the more she became neurodivergent.

Now, if a neurotypical person would have said that it would have been appropriating neurodivergence. But I knew exactly what she meant. She was getting to know her authentic self and her instincts told her she didn’t have to be performative or worry about saying the wrong thing to us. She was with her people.

After the meeting, I kept trying to analyze what it was that made me feel so drawn to her. I kept rewinding and replaying the memory (that’s an autistic thing), and those parts that are significant usually “glow” in my internal video footage. My cognitive journey went something like this:

It was her face.

It was her facial expressions.

But what about them?

It was her eyes.

But what about them? I had my camera off… this is not some metacognitive eye contact rumination.

I keep seeing captioning of words that weren’t spoken, but I read them in her face: a plan for a future she would manifest. A vision she saw but had not yet put to words. Very Grand Emotions.

Then it hit me! Most people would have seen her wide-eyed staring into the distance as communication to “look over there.” I knew at the level of instinct what she was doing. She was rhapsodic and in her bliss, feeling hopeful about the future.

She was not communicating anything with those expressions. It was just her processing.

I was attracted to the largess of her Hope. Her Optimism. Her Very Grand Emotions.

That was it. It explained so much, and I started doing this thing autistic people do once they realize they’re more than just a broken neurotypical— I had to relive a thousand memories.

A few days later, I made that Tweet. But I struggled with how to give examples because every adult autistic has learned to do things that don’t gel with their instincts and to see their differences as deficits to overcome.

So no examples could be reliable for adults— my audience.

Then this morning I saw in our Facebook group a link to that screener. And Autism Speaks proved me right.

I’ll show you:

Questions from the screener

The intro to the questionnaire, linked below.

The instructions read:

The Modified Checklist for Autism in Toddlers, Revised (M-CHAT-R) is a screener that will ask a series of 20 questions about your child’s behavior. It’s intended for toddlers between 16 and 30 months of age. The results will let you know if a further evaluation may be needed. You can use the results of the screener to discuss any concerns that you may have with your child’s healthcare provider.

Most of the 20 yes-or-no questions are about this instinct before kids learn to mask. A few are about incidental sensory issues like sensitivity to sound.

Again, here’s the theory:

And here’s question 1 of Autism Speaks’s screener:

Question reads: If you point at something across the room, does your child look at it? (For Example, if you point at a toy or an animal, does your child look at the toy or animal?)

Right! An autistic kid does not instinctually feel other people’s behaviors are communication. So they’re not thinking you’re pointing to ask them to look, at least not initially. They will learn that eventually. To them, it’s like stimming. It’s a way you’re processing.

Question reads: Have you ever wondered if your child might be deaf?

Right! Because before your child has language, they don’t regard your words as communication but as a reflection of your processing.

Question reads: Does your child play pretend or make-believe? (For Example, pretend to drink from an empty cup, pretend to talk on a phone, or pretend to feed a doll or stuffed animal?)

Right! Until an autistic child figures out that you’re communicating with words and not just processing, they might not appear as engaged with the outside world. Autistic-coded characters on shows and apps probably connect them faster to language acquisition.

Question reads: Does your child point with one finger to ask for something or to get help? (For Example, pointing to a snack or toy that is out of reach)

Again, their instinct is not that pointing is communication. That’s why they don’t look.

Question reads: “Does your child point with one finger to show you something interesting? (For Example, pointing to an airplane in the sky or a big truck in the road)”
Question reads: Is your child interested in other children? (For Example, does your child watch other children, smile at them, or go to them?)

Until the child realizes that all those behaviors are communication and not just manifestations of processing, they probably think that much of what other kids are doing is just the same as stimming. It’s not for them.

Question reads: Does your child show you things by bringing them to you or holding them up for you to see — not to get help, but just to share? (For Example, showing you a flower, a stuffed animal, or a toy truck)

Right. They are not showing you things initially because they are not thinking yet of those behaviors as social communication. That’s why the caveat, not to get help, but just to share. That’s because they don’t realize the pragmatic value of pointing yet.

Autistic kids do have other forms of social communication, but non-autistic parents don’t know how to read them. That’s for another article, though.

Question reads: Does your child respond when you call his or her name? (For Example, does he or she look up, talk or babble, or stop what he or she is doing when you call his or her name?)

Autistic kids don’t realize their name is their name until they’ve realized your communication structure and names and pronouns are all expressions of social relatedness, ownership, and hierarchy and not for labels and their functions. They will get there, but that is less natural.

That’s why a giant percentage of autistic people rename themselves in adulthood, struggle with pronouns in childhood, or have nicknames for people that in some way provide context rather than being a meaningless word (to them).

Question reads: When you smile at your child, does he or she smile back at you?

I legit have no idea, at age 41, why I’m supposed to smile at someone who smiles at me. That’s their expression, not mine. If I do smile— and I usually do— it’s just performative unless I’ve been inspired to smile. Otherwise, it’s just an expression of someone else’s processing and is not a social cue to me.

Question reads: Does your child look you in the eye when you are talking to him or her, playing with him or her, or dressing him or her?

Right. Of course not. They’re not trying to read your visual processing behaviors. It’s not for them. It’s for you.

Question reads: Does your child try to copy what you do? (For Example, wave bye-bye, clap, or make a funny noise when you do)

They won’t! Why would they try to process the same way as you? It would be meaningless to them.

Question reads: If you turn your head to look at something, does your child look around to see what you are looking at?

Again, to them, you’re not communicating. You’re processing. What’s in your brain is more important than what your eyes are seeing.

Question reads: Does your child try to get you to watch him or her? (For Example, does your child look at you for praise, or say “look” or “watch me”?)

Why would they? You can’t tell from their behaviors what is happening with their processing. Why would someone want praise for visual processing?

I suspect that just now, at this moment, many autistic people have figured out on a very deep level why they hate ABA therapy so much. It’s all based on neurotypical instincts about behavior as social communication.

Most autistic people have already cringed at the gendered pronouns that show ownership, too.

Question reads: Does your child understand when you tell him or her to do something? (For Example, if you don’t point, can your child understand “put the book on the chair” or “bring me the blanket”?)

Not at first, no. They are not seeing you as in a position of authority. You’re a more knowledgeable instructor to their instincts and values. If you’re not labeling items, then they’re not yet understanding the neurotypical social part of communication yet.

They’re not seeing their role as subordinate to your authority. They never will.

Question reads: If something new happens, does your child look at your face to see how you feel about it? (For Example, if he or she hears a strange or funny noise, or sees a new toy, will he or she look at your face?)

No. They don’t know how you process. They are wired to have the instincts that people all process differently. All autistic people do process differently, so their communication differences are a reflection of that.

Your expressions are unique to your mind. They might even look away and feel your expressions are private, like looking at your brain. They may hate when you look at them, especially when they’re upset.

Sensory questions

Again, some questions aren’t screening for autism but are looking at sensory differences that are incidental and not related to being autistic. They’re just more common to us because each autistic brain is unique.

Proprioception

Question reads: Does your child like climbing on things? (For Example, furniture, playground equipment, or stairs)

Vestibular

Question reads: Does your child like movement activities? (For example, being swung or bounced on your knee)

Visual processing

Question reads: “Does your child make unusual finger movements near his or her eyes? (For Example, does your child wiggle his or her fingers close to his or her eyes?)”

Sound sensitivity

Question reads: “Does your child get upset by everyday noises? (For Example, does your child scream or cry to noise such as a vacuum cleaner or loud music?)”

Gross motor

Question reads: Does your child walk?

Hot take

I scored my child according to where she was at around 24 months of age. Here’s what we got:

M-CHAT-R Risk Score: 18
Score indicates high risk. This means you should take your child to his or her doctor for a full evaluation. You should also begin early intervention services for your child.

I know that the two questions she didn’t match were related to her being sensory seeking whereas many autistic kids are avoidant.

But this gives me unadulterated rage. She isn’t socially lacking. She doesn’t need intervention. She’s happy, well-adjusted, firmly attached, and doing great. She doesn’t need intervention.

She might need sensory accommodations. I’m wired to identify those and accommodate for them, and I have the collective knowledge of the Autistic community to help me be better at that.

I sure as hell don’t want or need Autism Speaks to give me parenting advice. In fact, my wiring sees this as socially coercive ownership and to tell them to go straight to jail (I’m being generous) without passing go and without collecting a billion dollars a year on their disgusting autism-as-a-series-of-deficits-and-a-marketing-ploy power differential.

I don’t have the language to express how angry this makes me. Because this is my child, fully autistic, and I have no problems with any aspect of her.

My grandfather would’ve never noticed or cared that Autism Speaks existed. But also, anyone who knew him would have never implied something was wrong with me.

And that made all the difference. That was life-saving. Because so much of my life outside that insulated warmth was a refrain of, “What is wrong with you?”

I’m not sorry. I said what I said.

Most of my long-term friends are dead. It’s what happens when the whole world tells you your instincts are wrong and think that your brain is for them. It’s not.

For the love of all that’s decent, don’t exacerbate that with conversion therapy.

They say they’ve changed. They say ABA changed.

They didn’t. We are putting this information out so they can get us and have been for years, for free, and they’re still trying to change us and program us to work against our instincts.

I call this the Tyranny of Sameness.

They rely on the “severe autism” marketing ploy to push their agenda while calling medical issues and other conditions autism.

Autism is not epilepsy, IBS, mast cell activation syndrome, OCD, or food allergies.

Autism is a difference in how we perceive ourselves as a part of the broader world, and it’s highly specific.

We don’t instinctually see behaviors as communication because behaviors depend on processing. We are wired to intuit and accept differences.

Non-autistics are wired to intuit and reject differences.

Autistic Friendship

I recently delivered a conference with my friend, Kate Jones. She does most of the illustrations for NeuroClastic and a lot of work behind the scenes. The audience was mental health professionals.

More than the content of our presentation, people were most impressed by our friendship and rapport. We are finally in a place to know ourselves.

They saw how different we were, but how deep our bond was. We weren’t socially deficient. We were different from them— or the same, and they wanted that authenticity for themselves.

Below is a conversation I had recently with Kate. For reference, she’s Deaf. We were listening to a podcast we had done some months prior.

Kate’s movements weren’t communication. They weren’t for others. They were expressions of processing years of being oppressed for speaking honestly, for oralism, for being “indistinguishable from peers.”

Non-autistic empathy would never have been able to process what that meant.

Autism Speaks proved that we have different instincts with their screening questionnaire. They accurately identified autism.

Then they did what they said they don’t do by telling parents of toddlers, “This means you should take your child to his or her doctor for a full evaluation. You should also begin early intervention services for your child.”

They are speaking to non-autistic parents. “Hurry, convert them to knowing their place on the bottom rung of a power dynamic before it’s too late!”

There were no questions about meltdowns. No questions about emotions. No questions about medical issues. No questions about suffering. Just a few sensory questions and questions about normal autistic development.

This was all just Autism Speaks’s way to prove that social differences need to be normalized and autistic people need conversion therapy.

They proved how full of it they are when they push “autism acceptance.” They’re advertising this from a place of authority that your donations bought. They’re telling you they have the cure.

And I am telling you that your kids aren’t going to be grateful as adults for your interventions. They’re just not. This is why we have a 9x higher rate of suicide. Higher rates of addiction.

Listen to autistic adults active in their community. They’re on to something. They don’t all have your kids’ same sensory profiles or medical issues, but they’ll help you connect with your child in a way that encourages you to know your child and connect with them.

They have grown up in a world that has never served them, that has told them how people are without even acknowledging that they mean the majority.

It’s not enough to say “accept” us. You have to know us. But as a community, we are just developing a knowledge of what that means, not with the world’s “benevolent colonizer” help, but in spite of it.

We will never be happy until we know ourselves. We will never know ourselves if we’re following your instruction manual.

It’s not too different from telling a cat it’s a broken dog and getting angry at it when it rejects your leash or doesn’t perform your tricks.

Autistic adults can help you to interpret your autistic child’s language and communicate in a way that doesn’t depend on your sovereignty as an authority in a social hierarchy. They aren’t just like your child, but they’re closer to your child.

Being in the autistic community will have at least helped them to begin to chronicle what it means to be autistic and unpack all that violence they aim at their self-esteem and self-worth from a society that has different instincts.

You can absolutely live in sync with your child when you stop working against their neurology and start working with it.

And here’s a way to support NeuroClastic, an autistic-led nonprofit bringing the instructions as we catalog our intersectional community experiences. Please remember us when you do Giving Tuesday or run your birthday fundraisers on social media. All of our resources are ad-free, login-free, and free of cost.

Further reading:

On Autism Speaks

Autism Speaks Screening Tool

https://autismspeaks.org/screen-autism

Do you need to put your autistic toddler in therapy?

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11 Responses

    1. I feel like someone with executive functioning and time could help me to assemble a manual from what I’ve written and published here and help me to see what I have not yet covered. Almost everything I’ve published is here. It just needs to be assembled

  1. Ah, gee! I just love the insight about looking at others to see how they’re processing things and looking away when it ventures into vulnerable territory! I have always done that, and never realized it was different from what others do! To me, it’s how to support, how to build community, how to expand my understanding of context, environment, and expectation! No wonder I miss the social cues and others think I’m spacing out or intrusive! Thank you for this! I’m now reframing every interaction I’ve had!

  2. Since self-identifying as autistic a few months ago, so much of what I’ve learned here and on other sites from other autists has been like little bombs going off, blowing away one pathologizing misconception after another about what autism is. This post feels like a total A-bomb. It doesn’t just push back against neurotypicals pathologizing us. It blows the whole pathologizing lens to smithereens once and for all. But it’s not even just a bomb. It then replaces the old lens with a new one that is totally affirming.

    It made me think of this analogy (a different version of your own treating-a-cat-like-a-dog analogy): In the NT world, the highest and best thing to be is a Lawnmower. NTs consider themselves to be Highly Effective Lawnmowers. Autists are considered to be Defective Lawnmowers. Groups like Autism Speaks want to make us Improved Lawnmowers. Many autists push back and say “It’s ok to be whatever kind of Lawnmower you were born to be. Go ahead and mow lawns in your own unique way—even if it seems goofy to others. It’s even ok to be a Lawnmower who doesn’t like mowing lawns.” This post is like someone finally saying, “We’re not lawnmowers! We’re not Effective or Defective Lawnmowers. We definitely don’t need improvement to be better lawnmowers; and we don’t even need to think about mowing lawns AT ALL! Because we’re bicycles! Why are you trying to mow the lawn with a bicycle?? Bicycles don’t do that, we never will, and there’s absolutely no reason for us to even try. We do something totally different and no matter how important NTs think lawn mowing is, what we autists do is every bit as good and valuable.”

      1. Glad to hear that rang true for you and your family.

        A darker analogy also popped into my head in response to what you wrote; an analogy that maybe captures another aspect of the harm caused by the old paradigm that you so powerfully undermined. Just imagine if white supremacists had written a DSM-type manual, every bit as official-sounding as the actual DSM, but describing the “symptoms” of being non-white. Think of all the wonderful cultural traits, modes of perceiving reality, and forms of expression that would be officially pathologized. Think of the endless numbers of utterly useless and agonizingly destructive (but also endlessly lucrative) “therapies” that would be spun out of this and that would be imposed on countless non-white people.

        Of course, that’s not so very different from what has happened in real life; but there’s something about making these prejudices “scientific” and “official” in a very rational- and respectable-seeming way that makes it harder to push back against. As hard as it is to push back against a societal mentality that is blatantly prejudicial, it’s even harder when the prejudicial mentality is disguised and cloaked in an “enlightened“ and supposedly “helpful” framework.

        In your article, you make it clear to see that this is exactly what autistic people have been faced with. There has been some very good, important push-back against some of this from the autistic community, but this insight of yours—about how we autists process reality in a different but perfectly wonderful way and how this gets read as pathology by NTs—feels to me like a genuine turning point. This feels like a truly decisive step towards defining ourselves entirely on our own terms—terms that are finally reality-based, not prejudice-based.

  3. Terra you always speak truth to power when you post here and this article is no different! Your writing and depth of understanding (not to mention communication skills) blow me away every single time. I am so so grateful for your insight, you’ve helped me to understand my own inner being in a way that deftly subverts and obliterates NT assumption and expectation. It’s so true how you say that understanding ourselves as autistic beings is a path to power.

    I will def be participating in giving Tuesday as your selfless contributions have given me the support and understanding I’ve needed that no other NT structure has ever been able to provide.

    Much love to you dear, thank you for all that you do for the community!

  4. Brilliant … just brilliant! Thank you so much for writing this.

    “Intervention” … in what, exactly? And for what purpose?

    Does your child WISH to be intervened with? I suspect not.

    Us autistic people are entitled to be ourselves. To be who and what we are. And to live in the world, side-by-side with others who are different from us, without being despised or reviled for it. We recognise that the NT majority are different from us. We can see it … and we accept it. We don’t judge them for it or revile them for it. We just accept it. And some of us try to understand their ways of doing things. And those of us who manage to understand well enough, and mimic their behaviour patterns well enough to “fit in”, are called “high functioning” by them because … well … because we manage to suppress our differences enough, for long enough, that they feel able to accept us on their terms.

    Hello?

    How about accepting us on OUR terms … for who and what we are … same as we do every day with those around us who are not like us.

    Oh … I’m sorry … I guess NTs can’t do that. It’s because we are characterised by “rigidity of thinking” and they are not. Which is why their thinking is so inflexible as to be unable to accommodate the fact that some of us don’t speak in body language, and we always put our messages ON the lines, not between them, and we can’t read their body language either, so ALL the meaning we want to communicate goes into the words we choose as our form of communication with them. And all the meaning we manage to extract from their communication is the meaning we can get from their words. So if they thought about it they COULD put all their meaning into their words, but they don’t.

    Sooooo … yes … we CANNOT communicate their way. They CAN communicate our way but choose not to.

    And WE’RE the ones with rigidity of thinking, are we?

    No … sorry … I still don’t get it.

    Maybe when they describe us as having “rigidity of thinking”, they’re not just communicating their meaning by the words they’re using, but overlaying it with some of the other things they do to modify or negate the meaning of some or all of the words they choose to use. Yes … I guess that must be it. Only … I don’t LIKE having to guess at the meaning of a communication. I’m autistic, after all … I like (and expect) to be able to understand the meaning of a communication just by understanding the meaning of its words. That’s what words are FOR, isn’t it?

    Or perhaps the reason I don’t “get” it is just that nobody “intervened” with me when I was younger. I wasn’t diagnosed until I was 50, after all, so who was to know?

    I’ll stop there.

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