November 1, 2017

Autistics Speaking Day 2017: What I would say to autistic people who want a cure

Posted in Uncategorized tagged , , , , at 2:12 am by chavisory

 

ASDay 2017

Autistics Speaking Day was founded several years ago in response to a particularly ill-conceived charity campaign, as a way of resisting the narrative that we are or should be silent or non-communicative. We’ve utilized it, largely, to talk and write about the truths of our lives and refute common misconceptions to a largely non-autistic audience.

It has been less focused on autistic people speaking to each other. That’s what I’m hoping to do today.

Recently I was asked, in the context of a broader conversation on Twitter about the foundational principles of neurodiversity, what I would say to autistic people who do want a cure or support the development of a cure for autism. This post is adapted from that discussion. I’m not sure it’s what the person who asked me expected, and I’m not sure how many people who fit that description might ever read this, but, well, this is what I would say.

1.  You have a right to your feelings. I’m not going to tell you that you shouldn’t think or feel this way. I’m not going to tell you that you only want this because of “internalized ableism.” I’ve never found attempts to argue other people out of their own feelings very effective, and I really hate it when other people try to tell me what I feel and why.

You have a right to feel the way you do about your own life. I’m sorry if you’ve encountered autistic communities where it was suggested that that wasn’t true.

I think too many of us spend our lives being told that by too many other people. It’s not right, and I’m not going to do it.

2.  However, your feelings and wishes are no more real and genuine, or more authentic an experience of autism, than mine are. I’m not sugarcoating the experience of autism when I talk about why I oppose cure-based research and favor acceptance; I’m telling the truth about conclusions I’ve come to from my own experiences as well as a lot of listening to other people from all sides of this debate. And it would be a mistake to assume that those experiences were easy or mild just because I have not come to the same conclusions that you have. Chimamanda Ngozi Adichie discusses “the danger of the single story” when the single story is a stereotype imposed from outside a culture or marginalized group. But I think one of the biggest dangers that the culture of the autistic community faces is the allure of a single story told from within.

Neurodiversity advocates get told a lot that we “don’t speak for all autistic people.” That’s true.

Neither do you.

3.  I actually think you should have a right to access any treatment or therapy (within certain standards of demonstrated safety and effectiveness that any drug or medical device is required, for good reasons, to meet in this country) that you and your health care providers think might make your life better or more comfortable. Like all of us should.

People who oppose or who do not personally desire a cure are not just the people who have everything easy, who have no real problems. We want our medical issues and other challenges taken seriously.

We just think they’re a poor excuse for why people like us shouldn’t exist at all.

4.  But a true cure for autism (that doesn’t consist of eugenic abortion based on genetic profile) is not only something that we are nowhere even remotely close to achieving, but seems, to me at least, increasingly unlikely to be achievable in light of current research. Autism isn’t something located in one part of the brain. In the vast majority of cases, it’s not attributable to a single gene or even to a small number of genes, or to any discernible damage or definite pathology, but involves differences in how the brain matures over time and processes information in complex and subtle ways.

Serious attempts at a cure, to date, have tended to be ethical and human rights catastrophes.

5.  I don’t say that to make you hopeless. I say it to strongly suggest that you not wait for a very hypothetical future in which you might be able to turn yourself non-autistic in order to try to be happier. To find the things that make you happy or satisfied and follow those things wherever they lead. Because if you’ve put all of your hopes for joy or contentment with your life in the basket of a potential cure, then you’ve already made your decision in a way that is very unlikely to have the resolution you want.

6.  In any way and to any degree that you can, get out of bad or incompatible environments. They can really easily make you feel like the problem when you’re not.

When you have, for a really long time, been surrounded by people who make everything about you into a problem, or only ever been in environments that sent the message that everything you want but can’t have is because of autism, then it can be very, very difficult to tell the difference between artificial, arbitrary barriers, and obstacles actually imposed by autism itself. And those messages, those arbitrary, imposed barriers, are very, very prevalent in our society and in a lot of the ways that our families, teachers, healthcare professionals, potential employers, and other people who have a lot of power in our lives, are taught to see and treat autistic people.

Those things aren’t just natural, inevitable consequences of being autistic, and learning how to recognize and challenge them might not make you change your mind, but life can be a lot more livable.

7.  There are ways in which I think the neurodiversity community could do a lot better for all of us.

I think we need to have more room for people who don’t necessarily feel prideful or self-accepting, who feel ambivalently, who are still coming to terms with difficult or ambivalent personal histories.

I think we need more room for people to admit to struggling, both with acceptance and with the pragmatic realities of being autistic.

I think we need to remember that neurodiversity is about the conviction that autistic and other neurodivergent people are truly and wholly human, with everything that that entails, that our existence is natural and innate to human biodiversity, and that it would be wrong to try to eliminate autism and autistic traits from the fabric of humanity; and not about feeling 100% positive about our lives or identities at every given moment.

That’s not something that’s expected of typically-developing, non-disabled humans in order to justify their continued existence.

I also think there are compromises we rightfully will not make. That the neurodiversity movement for the most part does not engage or condone “Well, I don’t need a cure and people like you might not need a cure, but low-functioning people do” rhetoric is not because we don’t understand how disabling autism can be. Indeed, some of the pioneers of the neurodiversity movement were and are very significantly disabled people. It’s because we believe that autistic people are real and whole people, no matter the intensity of their disabilities or their support needs, and that all of us have a right to our own thoughts and feelings and decisions about our lives. That if we’re serious about honoring diversity, we don’t get to say “We’re okay and intrinsically valuable the way we are, but people like you aren’t.”

There are a lot of things we could do better to find common ground with autistic people whose goals and desires differ from our own. That we won’t do that isn’t one of them.

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5 Comments »

  1. Reblogged this on a coherent heart.

  2. danjodea said,

    I cannot like this enough. Oh sure, at times I’ve wanted a cure; when I was a kid I said, more than once, “I’d trade 50 IQ points to be normal”. But it doesn’t work that way; it is who I am, and to “cure” me would also rob me of my individuality. Thanks for all the thoughts and the inclusive language.

    • chavisory said,

      Yeah, I’ve been there. There were so many years when I was sure that one day I’d wake up normal. One day I’d wake up and everything would just click for me like it seemed to for everyone else.

      It’s a hard illusion to give up on.

  3. Reblogged this on Critique of Popular Reason.

  4. Dr. Levinstein said,

    I would never want to be normal. I am proud to be Autistic. We keep our promises, do not lie and would never steal. Neurotypicals could learn great deal from us .


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