what neurodiversity isn’t

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{image is a photo of Brooke from last week, midair in a jump above the beach. Behind her, the surf is powerfully white, the sky is impossibly blue, and every fiber of her being is calling back her joy to the universe. I love this girl with everything I am and, thanks to her, that’s far more than I ever thought I could be.}

 

I was wrong.

For a long time, I thought that subscribing to the neurodiversity movement meant simply giving up.

It doesn’t.

Well, maybe it does. But the only thing that it means giving up is the fight against who our children are.

It doesn’t mean giving up on them.

It doesn’t mean accepting struggle and pain.

It doesn’t mean not teaching them, guiding them, expecting and demanding progress.

Quite the opposite, in fact.

In 2009, I wrote the following.

Three years later, I see the grey area. Or, better said, I’ve discovered a rainbow between the black and the white. I’ve chosen to live in it – in this colorful patchwork of belief and methodology here on the middle ground. I have found that this need not be – can not be – an all or none proposition for me or my daughter. That there are indeed parts of autism that can be celebrated. That there are challenges that can be reframed over time – that may well manifest themselves as gifts in the right settings. That in some ways, autism is quite simply pretty integral to the amazing little person that I would give my left arm for. Looking at my incredible 6 ½ year-old girl, I no longer know how to separate Brooke from autism or autism from Brooke. I don’t know anymore that I would want to simply make it go away, because I’m not sure anymore that SHE would. If that makes me a card-carrying neuro-diversity mom, so be it, but I don’t think so.

I still want desperately to help her mitigate the challenges of autism. I still want to give Brooke the tools that can make life less hard for her. It tears my heart out to see her struggle. But to demonize autism is to demonize a big part of who my little girl is. And I find myself less and less capable of doing that. It’s messier than that. It’s sticky and it’s hard and it doesn’t lend itself to a surgical extraction. If we could eradicate autism today, I don’t know what would be left behind. I don’t know that I would recognize my little girl without it. It may scare the hell out of me to say that – it does scare the hell out of me to say that –  but challenges and all, autism is part of who she is.

I thought that being a card-carrying proponent of neurodiversity meant not helping my kid to mitigate the challenges that autism presents for her.

I was wrong.

And I really, really need you to hear this. Because I think that the misperception persists that accepting autism, that embracing and (gasp) celebrating the fact that we all have different neurological wiring systems, means giving up. It doesn’t.

It means redirecting the fight.

Yesterday, I posted the following on Diary’s Facebook page.

The following words were written by Phillip Reyes, a nonverbal eleven year old boy who began typing with a letter board two years ago, at the age of nine. I truly believe, from the bottom of my soul, that this is what we need to be focusing our energy on — finding alternate paths to effective communication for autistic people. As Philip tells us, being able to “tell your story” changes everything.

“Before I could communicate I was trapped in my autistic sounding board. I could not reach out with my thoughts. I only had myself to talk to. I was made to perform like a trained animal. I was treated as such. I stopped respecting myself, stopped opening up to others. I was without hope someone would know me.”

After describing the journey to where he is now, Phillip says, “Today I am blogging about the power of my communication. I am no longer sad about being autistic. I am happy being able to express my opinions and views as an autistic. I am spreading hope to other autistics that they can live meaningful lives. I am always learning and improving my skills. I have hopes for becoming a writer and advocate for autistics. Now I can tell my story.”

Read the full post here.

Visit Phillip’s blog here.

This is neurodiversity.

Respect for one’s identity … as an autistic person.

Finding / creating / providing tools to help him succeed … as an autistic person.

Last night, I had a long conversation with a reader who was new to Autismland. She asked about a boy whose mom had said that his Asperger’s “went away.”

This was what I said …

As for the mom who said her son’s Asperger’s went away, well, I can’t speak for anyone else, but I will say a couple of things. Diagnosing autism, particularly Asperger’s, which is very different from Brooke’s original diagnosis of classic autism, is very difficult, especially in very young children. The diagnostic process is totally subjective and dependent on an assessment of perceived behavior. It’s certainly plausible that what might have looked like Asperger’s in a young child was something else entirely and that it became clearer as the child got older.*

Also, sadly, many people work hard to make our kids indistinguishable from their peers. Some people are able to “pass” as neurotypical and have been taught that doing so is the very definition of success. They celebrate “losing diagnoses” by virtue of passing. Unfortunately, there is a heavy toll to be paid for passing as something you’re not. Many of my adult autistic friends have dealt with severe depression, alcohol and drug addictions, even attempted suicide because they’d been taught that the only way to be successful was to be – or pretend to be – neurotypical. Clearly a losing game. 

Neurodiversity means changing the definition of success. It means prizing self-actualization over self-camouflage. It means accepting how integral autism is to one’s identity, one’s understanding of themselves and the world around them. Autism is a Pervasive development disorder – embracing it means understanding that there is no aspect of life that it does not touch. It is the filter through which one experiences and interacts with the world.

Acceptance means no longer setting ourselves and our children up for failure by grading their a-typical progress in relation to someone else’s typical development. It means no longer trying to eradicate the thing that is such a huge part of who they are and instead working to make it less disabling. That’s the heart of this really – accepting autism as a fundamental part of our kids and then working with them to leverage its gifts and mitigate its challenges.

At this time last year, I wrote a post called What My Daughter Is Not Doing. The following is an excerpt of that post.

“She is kicking autism’s ass.”

No.

No, she’s not.

Autism is not cancer. Autism is not something that we are working to excise from her body. Autism is part of the framework of who she is. I’ve said this too many times to count, but I’ll say it again: Autism is pervasive. It’s right there in the definition – Pervasive Developmental Disorder. That means that it pervades EVERYTHING she sees and tastes and hears and smells and feels and processes and, yes, thinks. Everything that she interacts with, everything she experiences passes through the filter of a brain wired by autism. As such, kicking its ass means kicking HER ass. It doesn’t make sense.

I heard a story at a conference I attended a couple of years ago about a young man who put a gun to his head. A therapist had thought that some off-the-cuff CBT (Cognitive Behavior Therapy) might help him understand his challenges, so she told him that his autism was a ‘bad guy’ in his head who wasn’t letting the ‘good guy’ (presumably his nonexistent “non-autistic” brain) do the things it needed to do.

So he put a gun to his head.

Because as a literal thinker, he thought it would be a good way to “kill” the bad guy who wasn’t letting the good guy do his work.

The ‘bad guy’ was his brain. His brain was him. Killing the bad guy would mean killing himself.

You can’t tell someone to separate how they exist from who they are. 

It doesn’t work.

It’s not real.

He put a gun to his head to kill the autism. 

So telling my kid that she’s kicking autism’s ass because she’s doing well?

No.

Just no.

My daughter is kicking ass, period. She’s learning and growing and finding her way in a world that autism complicates for her. She’s learning to mitigate the challenges that it presents by leveraging the strengths that it also offers. She’s learning what she needs in order to do both and, even better, finding ways to ask for it. She is growing and changing and progressing. Skills are coming together as she collects the tools that she needs to grab this world by the balls and make it work for her.

Oh, and we’re getting better at helping her to do all of that. Which is pretty nifty too.

 

Phillip’s words haunt me.

I was made to perform like a trained animal. I was treated as such. I stopped respecting myself, stopped opening up to others. I was without hope someone would know me.

The story of the young man who put the gun to his head haunts me.

He put a gun to his head to kill the autism.

Phillip’s words give me hope.

I am no longer sad about being autistic. I am happy being able to express my opinions and views as an autistic. I am spreading hope to other autistics that they can live meaningful lives. I am always learning and improving my skills. I have hopes for becoming a writer and advocate for autistics. Now I can tell my story.

Naoki’s words give me hope.

To give the short version, I’ve learned that every human being, with or without disabilities, needs to strive to do their best, and by striving for happiness you will arrive at happiness. For us, you see, having autism is normal — so we can’t know for sure what your “normal” is even like. But so long as we can learn to love ourselves, I’m not sure how much it matters whether we’re normal or autistic.

Brooke’s words give me hope.

I like being autistic.

In response to that post back in 2009, a reader wrote the following comment.

it makes you a card-carrying neurodiversity mom because neurodiversity does NOT mean no treatment. It means acceptance. It means treating those with autism like people, because they are people. It means acknowledging there is both positive and negative. It means fighting for rights and resources.

She was right.

 

*This section has been updated. I have removed two sentences that were based on my incorrect understanding of the DSM. Please see Chavisory’s comment below for further clarification. Thank you, Chavisory!

33 thoughts on “what neurodiversity isn’t

  1. Booyah! Love it.

    The concept of “neurodiversity” is something that I feel gets almost instinctively misinterpreted by most people when they first encounter it (or over and over, in some cases). And it’s frustrating when people assume that being “pro-neurodiversity” means accepting the status quo, when that’s almost the exact opposite of what it means. Neurodiversity is about understanding that the world around us has primarily been built to accommodate and support the “Normal-Brain Person” (who doesn’t actually exist in real life), and to exclude and blame those who can’t get by, let alone succeed without “extra” help.

    When I say “I’m pro-neurodiversity!” I’m saying “I’m not going to keep pretending like it’s abnormal to be abnormal.” I’m saying “I’m not going to go along with the idea my medical insurance coverage policy is an accurate and unbiased judge of what medical care is ‘reasonable’ and what is ‘unnecessary.'” I’m saying “I refuse to accept that it just ‘makes sense’ for some people’s lives and livelihoods to be considered inherently less important, valuable, or constructive than others, solely because they don’t communicate, or move, or think like a ‘normal person’ is supposed to.”

    When I say “I’m pro-neurodiversity,” I am, quite literally, saying that the status quo is not acceptable. It’s just that the “status quo” I’m talking about refers to the way the world around me works, and the social rules and assumptions that dictate how I can and cannot live. I am not the status quo: being who I am is always acceptable.

  2. Actually, Asperger’s Syndrome did not become Social Communication Disorder; that label no longer exists, but those with Asperger’s Syndrome are presumed to mostly fall under Autism Spectrum Disorder.

    Asperger’s kids and adults were and are still autistic.

    Social Communication Disorder is reserved for those with, well, social communication issues, both verbal and non-verbal, without other features of autism.

    http://www.dsm5.org/Documents/Social%20Communication%20Disorder%20Fact%20Sheet.pdf

    “ASD must be ruled out for SCD to be diagnosed.”

  3. Just all of it…..It came at precisely the right moment… It applies to each and everyone of us who for whatever reason and at whatever age require help to be our best selves….
    Thank you….and to Phillip thank you for sharing your experiences. I am so glad you now have a means to communicate. Good luck with your goals..
    Peace to all.

  4. Passing is hard, and I think sometimes we non-autistic people don’t remember doing it. As the “weird”, geeky kid in a NON-geeky family; as the emotional/passionate person in a “don’t get upset” family, I never felt myself in my own family. I had to “tone myself down” and pass, and it became a habit that I’ve carried into adulthood. Thanks to some therapy and a loving husband and beautiful autistic kiddo, I’ve been spending a lot less time “passing” and a lot more time being myself.

    It’s not the same as being autistic and trying to hide yourself, but if it’s anywhere close, then I really feel for those who feel they have to pass – it’s EXHAUSTING for me, an NT. I just can’t imagine how much harder it is if you’re on the spectrum. I don’t know if it’s a truely valid comparison, but maybe it might help non-autistic people who never really thought about it “get” how hard passing is.

  5. I have a slogan that I’m designing into a badge and t-shirt etc, It says;

    Be proud to be different, be proud to be Autistic.

    Long before I was diagnosed with Asperger Syndrome, I was proud of the fact that I was different. I celebrated my eccentricity and went out of my way to dress according to my personality not how I was supposed to be dressing. So when I got diagnosed as autistic, my first reaction was ‘so that’s why’, followed by the decision to celebrate my autism in the same way I clebrate my eccentricity.

    That doesn’t mean I celebrate my difficulties, just that I don’t let those difficulties stop me from enjoying life in the way I want to.
    I sincerely hope that Brooke finds the same pride in her differences that I have. Given the level of social difficulty she has come from, and the sheer hard work it takes for her to overcome her problems, she has every right to be proud of herself, and every right to be proud of her individuality.

    To paraphrase myself:

    Be proud to be different, Be proud to be Brooke 😉

  6. It’s taking so much out of me lately to teach others how it feels to be inside my head. My boss at work (whom I love like a grandpa because he’s awesome and supportive and does try to understand me) said on the phone to me this week “Is there an echo in here?” when I repeated (echolalia) something he said. I had to explain to him why I did it (to verify that I heard him correctly because of a million sensory issues due to construction in my workplace). He apologized profusely because he said it not realizing that echoing was just part of what I do to make sure I’m comprehending things. But having to explain everything I do is exhausting sometimes. It’s nice to see you working so hard to learn from your autistic daughter without placing all the work of creating that understanding on her. (And I’m a supporter of neurodiversity in the sense of how your commenter described it. Never give up the fight for your daughter’s right to be respected as a whole and important human being. She will always need you in her corner even after she takes off to pick up the fight on her own.)

    All this just to say thank you for being you and letting your daughter be herself, too. 😊

  7. Thank you for this beautiful post. I “passed” as NT for the first 44 years of my life. Well, maybe not the first dozen years, but certainly from age 13. Depression, absolutely. Anxiety, you bet. It’s nerve wracking and exhausting to spend each moment in the company of other people pretending to be something you’re not and hoping that no one can see the real you poking through. Hating the real you because it’s somehow “bad.”

    My diagnosis last year was a gift. I’m learning to be myself – in public! Not just be myself, but embrace myself and celebrate the things that make me different. As part of that, though, I’m looking for therapy to increase some of my executive functioning skills. I’ve been hiding those deficits for so long that I didn’t know what they were. I knew I was having trouble achieving certain goals, but it never occurred to me that executive functioning skill deficits were holding me back; that I could target them specifically for an easier path to success. And by “easier path,” I mean being able to take a clear route, though it may involve detours, rather than trying to climb over a barricade in the dark wearing high heels and a pencil skirt and not even knowing if it’s the right barricade to get me where I want to go.

    The only thing I’m giving up by embracing my autism is all the work it took to pass as neurotypical. What a relief!

    Completely off topic: Look how high Brooke is jumping in that picture! She rocks!

  8. Yes!!! Acceptance is not giving in nor is it giving up. “But the only thing that it means giving up is the fight against who our children are.”

    Unfortunately so many parents seem so fixated on “curing” their child of their autism, that they often fail to recognize the fact that autism is not a disease that needs to be cured. It is part of every fibre of their being, and it is the filter by which they perceive the world. So many parents live within their anger, and I think that autism is an easy target for them to focus the brunt of their frustrations, helplessness, rage, and fear. What they fail to realize is that so much of their time and energy is going towards fighting the wrong battles.

    “Neurodiversity means changing the definition of success. It means prizing self-actualization over self-camouflage.” I so agree! If we are teaching our children to “pass” for something that they are not, not only are we fostering depression within them, but we are also losing the ability to glean that amazing, creative spark within them that ultimately has the potential to be a game changer in this society. By embracing the essence of who our children are (and the autistic adults in our society), we are opening the gateway towards unlimited possibilities. We must presume competence- always.

    Thank you for once again so eloquently explaining why we as parents must- always- be the facilitators in helping our children become who they are meant to be, rather than molding them into what society wants them to be.

  9. While the challenges at times can be overwhelming, being able to view the world through my kidlet’s eyes has literally been life changing. Thank you for sharing!

  10. Thank you for such an honest article. My son’s Aspergers has contributed to who he is. During school holidays, he is so happy. He is the sunshine in our house. School causes him so much distress. I know that we have a responsibility to make him into the most he can be, and to push him out of his comfort zone. Just sometimes, I wish I could let him be his happy self.

    • This I completely understand. My 14 year old daughter was diagnosed a couple of months ago. For the past 10 years she had been struggling to fit into school and we have only seen her happy in the holidays. This year she crumbled. She had multiple panic attacks every day at school. We had to take her out of school for a few weeks. As do as we started to slowly integrate her back the anxiety and panic reappeared. We finally talked to a friend who is a GP who helped us put all the advice, opinions and pressures together, look at it from her point if view and see the situation clearly. As of this morning we have withdrawn her from school completely. She will be working with horses one day a week and doing a lot of talking and CBT therapy to help her understand her history and to mitigate the anxiety. We have no idea what will happen in the future, all we know is she needs, deserves to be heard and accepted as she is.

  11. if acceptance means giving up, it means giving up on doing so many bad things that could wreck us autistic and to start doing much better things that help us out a lot.

  12. “Autism is a Pervasive development disorder – embracing it means understanding that there is no aspect of life that it does not touch. It is the filter through which one experiences and interacts with the world.”

    Brilliant. Thank you.

  13. Pingback: What I’ve been reading – September 2014 | ASD Dad

  14. Pingback: What neurodiversity isn’t | lovenlearning

  15. Hi, I am Philip’s mom and I want to thank you for weaving his story along with the others here to explain neurodiversity and why it’s so important to take this view of autism over all other views, such as medical or devolopmental delay models of autism. This post is simply brilliant! I particularly like what you wrote here:

    Acceptance means no longer setting ourselves and our children up for failure by grading their a-typical progress in relation to someone else’s typical development. It means no longer trying to eradicate the thing that is such a huge part of who they are and instead working to make it less disabling. That’s the heart of this really – accepting autism as a fundamental part of our kids and then working with them to leverage its gifts and mitigate its challenges.

    Thank you so much for writing this!

  16. Pingback: We Don't Need a Cure for Autism – And Pushing One Is Really Messed Up — Everyday Feminism

  17. Jess, have you come across the ‘rabid’ anti-neurodiversity people, and what in the world do you do with them? They’ve decided all ND people are “high-functioning”, power-hungry, self-serving, political jockeys who have no idea what “real” autism is like, and basically insult any autistic or non autistic person who believes in neurodiversity. I’m at a loss as to how to address these people, and I don’t think they’d bother engaging other than to rant at me. I think I’d just like to post something that would be useful for OTHER people who read their rants and come across a useful reply that I can leave.

    Any recommendations as to the best “this is what neurodiversity really is, actually” posts? Thanks!

  18. Pingback: http://everydayfeminism.com/2015/06/pushing-autism-cure-messed-up/?utm_content=buffer8be3f&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer | HowTipz

  19. Pingback: The neurodiversity movement: it’s not what you think – anarchistwithatoddler

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