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A Letter to Pro-Cure Autistic People4 min read

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
Latest posts by Ren Everett (see all)

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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