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A Letter to Pro-Cure Autistic People

I intend to be sincere with this letter, not sarcastic.

It’s not meant to be an attack piece, and it’s not meant to be a persuasive essay.

I don’t intend to change your mind about wanting a cure. That’s a personal belief that you must hold for a good reason.

But if being autistic causes suffering in your life, then you might believe that I’m contributing to that suffering by opposing a cure (and/or opposing treatments that “normalize” autistic people.)

I’m honestly and sincerely sorry. My aim in my life is to cause the least amount of harm possible in every choice that I make. The idea that I could actively be causing harm doesn’t sit well with me, and I want to make it right.

I have a series of promises I’d like to make here, publicly, so that you can all hold me accountable if I break any of them. I consider myself to be a person of my word, and I rarely ever make promises I don’t intend to keep… and usually don’t make promises anyway, because … well, demand avoidance.

But I can keep these.

First off, I promise that I will always try to approach the idea of a cure or treatment with compassion in mind. If someone feels they need to be cured, it’s logical to reason that they are hurting. I will try to keep this in mind to avoid minimizing any harm.

My second promise is that all of my advocacy work will have the end goal of the well-being of autistic people in mind. I promise that my intentions are always to better our lives as autistic people, not to make them worse.

I promise to support research into preventing seizures and gastrointestinal issues. These are medical issues, not a feature of neurodivergence. Treatment is definitely appropriate.

I promise that while I am, yes, opposed to a cure (including pseudoscientific “treatments”) and behavioural modification, they are actually the only treatments that I am against. I am opposed to the idea of early intervention, because I believe every person should be given the chance to thrive in their natural setting, but I know that autistic people have benefited from play therapy, occupational therapy, speech therapy, talk therapy, CBT, DBT, the SCERTS model, and more.

I promise that I will push for funding for all of those therapies for all autistic people. I do believe, as long as our society disadvantages autistic people, that governments should fund these as necessary health care for autistic people of all ages.

I promise that I will also push for the funding of alternative and augmentative communication devices and training of AAC methods. The ability to communicate authentically and effectively, as early as possible, is critical for all people.

I promise that I will also support funding for service dogs for autistic people. Service dogs can be an amazing help to autistic people, providing comfort, grounding, safety, and a variety of tasks, depending on the capabilities of the autist in question.

I’ve claimed that autistic people could topple the behavioural industry if our knowledge about autism got out to parents and to greater society. I promise I will try to meet that challenge personally. Whenever I can, I will try to provide well-written resources to anyone who approaches me in good faith looking for help or advice, or that I will try to find them someone who can provide that.

I promise to support the full inclusion of autistic people in educational settings and that my solution isn’t just “put all the students together and see how it goes.” Our full inclusion will require some redesign of the school environment and modification of the curriculum to include accommodations, so that everyone can learn successfully.

I promise to support the full inclusion of autistic people everywhere. I want an end to institutionalization and being committed to psychiatric hospitals against our wills.

I promise to push for supported decision-making over guardianship agreements. No matter our neurology or intellectual capacity, we have a right to make autonomous choices about our own lives and how we live them.

I promise to support efforts to help autistic people find (and keep) gainful, purposeful employment with fair, competitive wages. Many of us want jobs but are unable to keep them for reasons associated with our neurology. For as long as our society relies on work for survival, this is, of course, unacceptable.

I promise that I want a lot of the same things that you do. I want an end to discrimination and bullying against us for being different. I want autistic people to have an easier time finding romantic partners who accept us. I want each of us to have a say as we move away from “Autism Speaks” and towards “autistics speaking.”

I oppose a cure because I believe that all autistic people have inherent value as we are. But I don’t want suffering. I don’t want suffering at all.

Perhaps your ideal future is one in which you fit in because you are no longer different. You have every right to feel that way.

My ideal future is one in which I fit in because I am exactly the way I am: my communication is understood the way I intended it; my sensory needs are a default consideration; both my strengths and my weaknesses are acknowledged; and anything that does disable me can be either treated or accommodated for.

We deserve that. You deserve that!

I don’t know if there will ever be a cure. In the meantime, I hope that the promises I’ve made are the types of things that you’re in support of as well. I’m sure there is common ground to find between us somewhere.

You deserve to be acknowledged and accommodated right now.

You shouldn’t have to wait for a hypothetical cure to be welcomed, included, and treated with inherent worth.

Sincerely,
Ren

Ren Everett

6 Comments

  1. I love this article. Just within this past week I asked my primary physician for a referral to be tested for autism. Once I described my “symptoms”, he kindly accommodated me saying, “I hope they can help you”. I told him that I did not seek to be helped or fixed. I’m seeking to be understood and to further understand my condition.

  2. I promise these, too.

  3. We need to talk about apraxia.

    I love Benjamin Alexander’s sense of humor, and I think he (and I) agree with 95% of what you say here. If you’re unfamiliar with his work, you’ll probably like this short response to a question on how to measure success in living with autism: https://www-spectrumnews-org.cdn.ampproject.org/v/s/www.spectrumnews.org/opinion/cross-talk/defines-success-autism-treatments/amp?amp_js_v=0.1&usqp=mq331AQCKAE%3D#response-3

    I bring it up because of his essay on how he scandalized the whole congregation at his bar mitzvah by raging against God. https://www.vianolavie.org/2015/01/09/autism-the-gift-with-no-return-94721/

    Benjamin Alexander lives with not only epilepsy, but also disabling apraxia… and apraxia is what frustrates him most of all. I am verbal, but there have been times where I’ve dropped things accidentally, and people have taken it as an act of malice. Maybe it is an act of malice… by my nervous system against my conscious sense of self. I could really live without the war I have to fight with my jaw and tongue just to form words when I’m verklempt. I’m ok with a lot of other aspects of my autisticness, but I’m so tired of my body deciding not to cooperate!

    Apraxia is right up there with epilepsy as far as most dangerous complications of autism. What if you can’t comply with a police officer’s orders to put your hands up? What if you can’t use a symbol chart because of apraxia and everyone assumes you don’t understand what’s going on around you? If there was something that could alleviate apraxia in autistic people, I would totally support its development. I can’t imagine anyone, NT or autistic, truly wanting to struggle with muscle control.

  4. Did you see the January 21, 2020 blog (9 page pdf) by Alfie Kohn? https://www.alfiekohn.org/blogs/autism/ I would like to quote one paragraph from that blog which fits my opinion and I believe yours and is quite appropriate to mention here:

    “So why are autistic people so opposed? For many, the underlying assumption that they have a disease that needs to be cured is misconceived and offensive. Resistance to this premise led to the founding of the Autistic Self-Advocacy Network and has been described in such mainstream periodicals as Salon, the Atlantic, and the New York Times. From the last of those three articles: “Autism has traditionally been seen as a shell from which a normal child might one day emerge. But some advocates contend that autism is an integral part of their identities, much more like a skin than a shell, and not one they care to shed. The effort to cure autism, they say, is not like curing cancer, but like the efforts of a previous age to cure left-handedness.” Or like curing homosexuality: In the autism community, ABA is often compared to gay conversion therapy.3 Many argue that its goal is to force these children to stop being who they are.

    While this objection presumably would apply to any method used to “cure” people of autism, ABA is uniquely repugnant. Here’s why: [read blog for rest]”

  5. Not wanting to be cured from your own Autism is not the same as not wanting a cure for others that want it because they are in a bad way.
    The latter simply betrays the typical selfish low empathy view shared with many advocates who are oblivious and uninterested in the suffering of those in a worse predicament.

    Even removing the co-morbids, that more than a third of us suffer from one is still left with the core symptoms, sensory issues, motor co-ordination problems, social isolation, massively increased difficulty in finding a romantic partner and seriously undermined job prospects.

    Fortunately these selfish advocates are very transparent and they don’t tend be very smart, for example the author states he wants to help people by supporting provisions to help with their disability its quite obvious to anyone with half a brain that the biggest help would be to cure the person so they don’t need the help in the first place!

    “I oppose a cure because I believe that all autistic people have inherent value as we are”

    The authors comment makes no sense value and being able to thrive are two different things, a child with one leg is valued but he would be able to thrive with two, autism is a disability caused by a genetic mutation that prevents the vast majority from thriving, anyone who cannot recognise that is in serious denial.

    The author a non-cure advocate so typical of his ilk pretends to care for the suffering we go through, but we must suffer so he says because wait for it – so we are valued!

    Here`s news for you we don’t care about being “valued” we just want our brains to work properly.

    But wait a minute here comes neurodiversity to the rescue with its end of the rainbow list of unachievable impossible demands to help the autistic man who cant get dressed by himself to get a job, live on his own and earn a handsome wage without any of the necessary medical intervention to improve his functioning. It’s a miracle!

    If anyone believes that they believe anything!

    Thank god your views are ignored by the worldwide scientific establishment as autism research continues unabated, with advances being made all the time.

    One day autism will be treatable and prevented altogether in children and there`s nothing the empathy bypass advocates & their loony swivel eyed NT enablers can do about it.

    They will end up a footnote in the history of psychiatry.

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