A Bed of Roses Still Has Thorns – On #Autism and Cures

A Bed of Roses Still Has Thorns – On #Autism and Cures

As an autistic woman, would I want to be cured?

It’s a valid question, and one that I believe is worth exploring in depth because its simplicity hides a host of unspoken assumptions, assumptions that differ depending on who you ask.

What Is Autism?

Autism is not just a medical diagnosis based on a set of clinical observations, even though that’s exactly how it’s defined in manuals such as DSM and ICD. Those are just the outward tell-tale signs of a brain that works a bit differently from most.

I don’t pretend to understand how my brain works or how an autistic brain is different from a non-autistic one: I don’t know what exactly makes somebody autistic. I do know I can relate my experiences very strongly to those of many of the autistic people I know personally. I know that almost all my friends are autistic and that I have more trouble establishing close relationships with non-autistics.

One of the reasons that an autistic culture has arisen, especially since the growth of the internet made long-distance and alternative–not face to face and largely written–communication so much easier, cheaper and faster, is that so many of us relate to each other on levels that we can’t reach with non-autistics: this is a consequence of the double-empathy problem where each group has difficulty relating to the other.

Where you have a culture, you have an identity associated with it. So you often find autistic people speak about autism as an identity–a cultural identity–much more than as a condition or diagnosis. This phenomenon of autism as cultural identity is why so many of us feel a strong preference for referring to ourselves as autistic and not “people with autism”.

Neurodiversity

The concept of neurodiversity is strongly associated with, although by definition not restricted to, autism. In simple terms it is the idea that autism, ADHD and other neurological differences are all part of the normal variation of human brains. It’s the idea that these are differences, not faults.

That’s not to say that we don’t recognise the ways in which our differences can present obstacles in daily life. Some of these can be disabling, especially in a world that is largely shaped by and for the neurotypical majority.

The problem with the medical definition and view of autism is that it’s entirely based on deficits, on aspects that are seen as inferior when compared to the predominant neurotype. It’s like the old saying, “When all you have is a hammer the whole world looks like a nail”: when you always frame neurodivergence as a collection of faults, you only see it as something to be fixed.

Support Needs versus Quality of Life

So we come to one of the key points: many neurodivergent people have non-trivial support needs in their everyday lives. Many of us need assistance in one form or another, whether it’s with communication, mobility, tasks such as washing, dressing or eating.

Many people who don’t require such support would equate that with a poor quality of life but that’s not true. They assume that needing assistance means you lose autonomy, the ability and right to make decisions about things that affect you. The opposite can be true with the right support: it can enable someone to do things that they would otherwise be unable to.

Requiring support, even for basic tasks and activities, does not mean having a poor quality of life. Encountering prejudices and having support restricted or denied, on the other hand, does severely reduce the fulfilment in one’s life. There’s no scale from having a good life at one end to having high support needs at the other: it’s possible to have both.

Cure = Reducing Support, not Needs

This idea that requiring more assistance and support means that one has a worse life–because that’s the assumption made by people who don’t have such needs–is a key motivation behind much of the search for autism cures. There’s certainly money to be made for the corporations and medical professionals offering these treatments too, which is always a consideration.

The problem with such an approach is that it largely ignores the needs of people today, and the cure agenda is pursued instead of investing in support services. It’s a “jam tomorrow” scenario, made worse by the priority being which “jam” they feel will offer the best return on investment and not which one those receiving it might be asking for.

There is a history of research priorities being set without the input of those the studies are focused on, leading to unmet needs and a growing disenchantment with and mistrust of the medical establishment.

When this happens against a backdrop of cuts to social services and increasing barriers to access what remains, it’s no wonder that there’s considerable scepticism among autistics whenever some new prospective cure is announced. Indeed there’s growing anger that our priorities are routinely ignored or overridden.

Cure = Eradication

Some treatments are aimed at reducing or eliminating already-present aspects of autism–things like “improving” our social interactions or our ability to act “normal”. Others, particularly involving genetic manipulation, are intended to prevent autistic traits arising at all.

When we hear talk like this about “curing” autism it comes across as a desire to eliminate us as a people, destroy our culture, remove the core part of our identity. Eradicate that which makes us who we are, and so eradicate us. This is why there’s such strong opposition from autistic people to research into what from our point of view is no different from eugenics or genocide.

Would I Want To be Cured?

After all that, back to the question I started with. For me, being autistic is not something I can separate from how I see myself: it’s an intrinsic part of me, one of the aspects that makes me uniquely me. Without it I would not be me.

I feel at home in autistic culture, among people I can relate to and identify with. My people.

Anything that threatened to break the affinity I feel, that risked severing my feeling of connection to these people, would feel like it threatened my very life. Maybe even worse than that, because I would go on, cut adrift from the tribe that feels like home to me and I would be keenly aware of the loss.

But there are things I struggle with. I sometimes become overwhelmed by emotions and/or sensations and unable to express myself verbally, either in speech or even writing. I misunderstand people–neurotypical people especially–because I expect them to respond the way I or another autistic would. I have sensory processing and executive dysfunction.

Would I like to never again feel overwhelmed and disoriented by complex noise or too-bright lighting? Would I like to be able to remember what I came into a room looking for? Would I like to be able to keep my apartment organised?

These are areas where I want assistance. If there was a way to “fix” them while leaving everything else intact would I be interested? Maybe, but I’d need to be sure the cure wouldn’t have unintended consequences: side-effects.

So there’s my answer: a definite maybe, if it’s not too much trouble and it wouldn’t do anything I didn’t want it to. I’ll take help if it’s going, I might consider limited treatments, but I would never want to not be autistic. I don’t want to be “cured” because although I accept that I’m disabled, I don’t see myself as broken.

8 thoughts on “A Bed of Roses Still Has Thorns – On #Autism and Cures

  1. The problem isn’t, and never has been, autistic people. It’s a world, like you mention, that believes certain ways of being in the world, of thinking, of doing things, is the ONLY way of doing things. I just want to use one example, that of eye contact. Who came up with the “rules and conditions” of this? Who says that looking a person in the eye while talking to them is the “right” way to go about it? That avoiding eye contact is a sign of deceit or low self-esteem? Heck, for all we know, our earliest ancestors might have seen eye contact as a sign of threat. Really, the world needs to change to accept that there’s more than one way of being.

    Liked by 2 people

  2. Awesome post, thank you! I am an adult woman diagnosed on the spectrum at age 28. I recently started blogging and found you while searching for other autistic female bloggers. Your writing and points are both very strong. I look forward to following you!

    Liked by 1 person

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