The Cost of a Cure for Autism

I’ve asked myself if I would want a cure for my autism if it wasn’t mythical (the cure, not the autism). I’m a logical type, I’m not bound to any one part of me; if you told me I could replace my feet with wheels, I’d definitely weigh up the pros and cons (stairs would be a pain, but I’d really like whizzing along, a lot would come down to just how good the suspension would be), thinking things through is what I do.

To decide whether getting rid of my autism would be good or not, I’d first have to define which bits of me are the autism, and what would replace them. How could I begin to quantify that?

Some of my greatest joys, my purest moments of happiness, are found in the patterns I see all around me. In the way a butterfly flutters, or a wall crumbles; in the way the sunlight folds itself on water. I have seen how people without autism see those things, they can appreciate a prettiness, but I’ve never seen an expression of joy at them. I’ve never seen those things nourish them, the way they nourish me.

Is that the autism?

Or is it the exhaustion I get from small talk? Is it the headache that builds and pulses whilst I focus on responding correctly to something inane and hard? Is it the terrible combination of needing to concentrate the hardest on something that I find both boring and difficult?

Or is it the pleasure I find in communicating with someone who skips those bits. The connection made in bouncing ideas back and forth as they appear. The freedom of sharing my thoughts without fear of judgement.

It’s not interactions that my autism hates, it’s the wrong kinds of interactions.

What would I be replacing my processes with? It would be nice to enjoy small talk I suppose, but it would be equally as nice if I just didn’t have to do it.

Should I pull all the tendrils of me apart, just to be able to participate in something that has no value in itself. Small talk is a means to an end, it’s a conduit, it’s a way to build relationships on multiple small, inoffensive interactions. It’s the equivalent of a dog sniffing another dog. It’s just what people do.

Not all people. Not all non-autistics.

What would I cure if I could? I’d cure small talk. I’d inoculate against it. I’d start a campaign to wipe it out.

We would learn new ways to find out if we were compatible humans. Small doses of big talk. We could quickly work through to our fundamental views, and sense of humour, and no time would be wasted on vagaries.

Or I could be tolerant, and accept that some people really like small talk, and that’s ok. Some people don’t like passionate exchanges, they find them too much. Some people prefer to jabber, some people prefer to listen, some people prefer to speak, some people prefer to sign.

From my point of view, I am not the disordered one. There is structure to my needs. There is logic in the way I like to communicate. I am happy with fewer, but more meaningful, interactions. Many need constant, but smaller, contact, to keep them going. They graze on socialising in a herd, whilst I swallow mine whole, in one sitting, and then snake-like, sleep and digest until I feel hungry again.

Would I cure my autism? Would you cure your addiction to interaction? Should anyone change how they do things, just because they need to do things a little differently?

I have a secret, it’s not big or important or mind-blowing, but I’ll share it anyway. I like me.

It took me a long time to choose to do that; a lifetime of self-criticism and disappointment in my limits, but I got there in the end.

I like me, and the people who like who and how I am also like me. I fit into my world, once I realised that listening to my needs was not a terrible thing to do.

Curing me of how I interact would mean not just changing who I am, but changing how I interact with everything. I would have to rebuild from the ground up. I would have to unlearn all my skills, I would not be the person my husband fell in love with, or my friends like to laugh with. What would my humour be? Would I suddenly think cushions were important? Would I find that all my best bits could blossom, or would they wilt away?

Maybe for a day. I would like to try your way for a day. Just 24 little hours. That would do. I would enjoy the social-energy, and flit from person to person with the buzz of a bumble-bee.

Then when the sun set, I could wake up and marvel at the swirls in the sky, and the shadows on the ceiling, and the curls in my daughter’s hair. All my senses would flood back, my deep empathy, my ever-present textures, and I would be home again.
I would be me.

Published by Rhi

68 thoughts on “The Cost of a Cure for Autism”

  2. thank you for your very interesting post. I, as a late DX, don’t know what any mythological cure would give me. because I did not know I was Aspie until recently I’ve incorporated autism into my life completely. asking me if I’d like a cure is like asking me if I’d like to have my eyes surgically removed.

    I honestly don’t know what or who I would be without my autism because I’ve yet to work out who I am with it. still finding my post dx feet here.

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    1. I’ve found a lot of my post-diagnosis journey has been spent working out how other people think, rather than how I do. I already know my way of seeing the world, it’s interesting to find out that most people don’t share that angle.

      I feel the same; it’s who I am. An integral part of me.

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  3. Interesting thoughts.
    I have spent my whole life trying to work out how other people think. Observing them, analysing them, and asking myself why do they do what they do. I’ll never forget the day when an ex told me that I unnerved him. He always felt like a bug under a microscope, waiting to be dissected. I will also never forget those moments when people yelled at me in frustration because I was not Normal in their eyes.I’ll never forget the moment when a fellow student told me to go back to wherever the h**** I came from and crawl back under the stone from which I had crawled out from. My response? Someone had moved the stone, and now I could never go home again. 😉
    Huh? Me? Not Normal? What is Normal anyway and who gets to decide? Now that I have been made aware of the possibility that I just might be autistic, I find myself analysing myself .How do I think? How do I tick? What kind of animal am I? Do I want to be normal? How much is this normal malarkey going to cost me anyway? ( Not cost as in money, but cost as in losing my integrity, my ability to accept that we don’t have to fit into a predetermined way of being.)

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    1. It’s far better to expand the definition of normal to include other ways of being, than it is to say “behave like the majority or your version of human doesn’t count”. The day I realised that I am utterly normal for an autistic person was such a relief. We are not alone, or strange, we’re just built with a slightly different processing system.

      Be you. That’s the best person to be.

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      1. My thoughts exactly. I have never wanted to be anything else than who I am. I never judged anyone else as inferior because they failed to be like me. A different way of thinking opens new perspectives, a new way of seeing the world. One might not always agree and seeing the world from a new perspective might not always be a pretty sight – but why reject it outright

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  4. Great article! Since my diagnosis I’ve had these thoughts as well. Diagnosed in my 30’s meant I lived an entire life not knowing I was Autistic and so I struggled a great deal more than I should have had I known my own mental structure.

    I don’t think I would want a cure though. I love how my mind works and like you would more likely cure the neurotypical need for constant small talk. Doesn’t that seem like much more of a disorder? The constant need to destroy the silence seems much stranger to me than any of my autistic traits.

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    1. Couldn’t agree more. I will never understand that need for meaningless interaction, but I can accept that other people like it. I just want that same acceptance for my ways of doing things.

      Thanks for your comment 💐

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  5. Our problem is, that to us the NT interactions seem meaningless due to lack of factual content and an excess of emotional content. To the NT’s it is the verbal glue that keeps them all stuck together. It is hard to belong when you resist being slathered in “glue”

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  6. Good insight and thoughts Rhi 🌹
    In my case I realised that being Autistic has been THE something I missed for my entire life, the key to all my unanswered questions, the clue to all my unique way of acting, thinking, seeing life in general. It’s honestly comparable only to having reached a superior state of cognition, through which my brain’s functionality has gone from the basic ‘how’, to the more comprehensive ‘and why’. I’m also sure that Autism and Asperger’s needs to shift from being included in MH/Psychology/Psychiatry and become a scientific area of its own, affiliated to neurological and psychological sciences for the related symptoms, but autonomous. Silberman is right, and the future of our society may depend on understanding autism…

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    1. I love the definition as going from “how” to “why”. So apt!

      And yes. Neurological differences should not be classed under MH at all. We are structured differently, we are not “faulty neurotypicals” we are “perfectly formed Autistics”. The movement for neurodivergent acceptance is such an important one. Thank you 💐

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  7. Beautiful read. I can relate to everything you wrote and by definition or whatever conventional method is used I am not autistic… but then again maybe I am! Either way, I would still love me and still hate small talk!

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  8. Beautiful post. I wish the world would somehow cater to us autistics more, but can’t see myself wishing to be “normal”. I’d fit in better if I was, but I’d miss out on a unique perspective on life. It’s a quandary, but I’m leaning toward the option of not being cured. I’d like to think that I’m fine just the way I am.

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    1. Thank you 💐

      You’re right. We are just fine the way we are. A few more accommodations would make life a lot easier, but “normal” is overrated.

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  10. I really like your blog. My son is autistic, lower functioning. He most likely won’t live independently as an adult. The first thing I thought when I read your post was that a cure is impossible. Being autistic is part of his DNA, we would have to change his DNA to cure it. I can only open up his world to tools to make his life a little easier. My son is 12 now and I have stopped wishing for a “normal” life, that would be boring. When he is in his best way he is funny, loving and just the sweetest boy ever. I can’t predict the future, but knowing my son now, the way he is now, I don’t want a cure. ❤

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    1. After a night where my whirring brain wouldn’t let me sleep, you have done the impossible, and made me smile. You’re so right, who your son is is perfect. Being accepted for who we are in this world is the difference between living well and not fitting in. You have warmed my heart. Thank you 💐

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  11. Thank you for this – I really needed it to pull myself together to support my son like I always have. He is almost 17 in his senior year of high school

    My biggest challenge is doing his work for school and that’s with the modifications from IEP.

    I am fortunate in some aspects that my daughter is in her second year of college for elementary education – with a focus on Special Education. I want to get through his last year of high school then we can try multiple other options.

    Once again this was amazing to read to show me completely differently perspect. Wow I needed that

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    1. Thank you. Don’t underestimate just how much of a difference you are making with your support. 17 was an incredibly difficult age for me, I found juggling everything so very hard. My executive function was letting me down, the rules for socialising were changing; sometimes it felt like the whole world was full of angry bees, there was no way I could fight my way through the storm.

      Supporting a teen can be so hard. There’s nothing wrong with feeling ground down by it at times. We are all human. But your support has such power and is so important. I’m so glad my post helped. You will get there, all together. Whichever path they follow will be the right one for them. 💐

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  12. Hi Rhi ,
    Lovely post agree with you say I was thinking of my Autistic Daughter who told me she wants to remain as she is that’s the beauty of autism with its little quirks , there is so much she doesn’t understand. She is Anorexic as well as having a Personality Disorder. She had to go into Hospital because of a Low Pulse. I watched yesterday as a Dietician tried to persuade Hazel to eat more Her Autistic traits flew into action , particularly her rigid behaviour and there was no way she was going to increase her Diet. It was quite amusing to watch as Hazel who is only 39 Kilos in a very frail Body demonstrated her strong will and refusal to do anything she didn’t want to. She sometimes shows these facets of her character which makes her who she is and I love her for it, Predicting an outcome is also a difficulty for her but she manages very well and all her friends say she has a lovely caring Personality That’s the Beauty of autism.

    Laurence xxx

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    1. Hi Laurence,

      What a difficult time you must all be having. Eating disorders are so difficult, I struggled when I was younger. Your love for Hazel shines through. I love the image of her determination, there is great strength there, and clearly great support too.

      It took me a while to realise just how crafty my husband had become when dealing with my rigid thinking. He never presents anything as “you should do this”, he will often just present me with some information, then leave me awhile to digest it (sometimes days), before asking my opinion on it, and maybe eventually suggesting it would be a good idea. He knows my automatic response will be to dig my heels in and reach for what I know.

      Cunning and sneaky, he is gently and safely expanding my world. Just as I do his, by sharing my joys and passions with him. We are a good team.

      Your daughter sounds wonderful, and your respect for her his clear. I wish you all the best.
      Rhi

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  13. If a cure were possible, I totally agree that you should be able to choose not to take it. If you like yourself just the way you are, well that’s a wonderful thing to have. However there should be no stigma for an autistic who WOULD choose to take it. So with this in mind I think we should continue to push for therapies and treatments for those who would deem autism detrimental to their lives. It’s all about choices, and the more we have, the better.

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    1. There is a desperate need for funding to be put into support for autistic people. Unfortunately at the moment a lot of this is directed towards looking for a “cure” rather than (for example) appropriate treatment for anxiety and other common negative symptoms of being an autistic person in a world that isn’t designed around our needs. There is an enormous imbalance in where funds are spent, and this does need addressing. For example CBT can be really successful in improving quality of life, but accessing it as an autistic is incredibly hard as most therapists don’t have the training in adjusted methods. I’d love to see more funding put towards practical support like that. Things that can actually make a difference to people’s lives today. Rather than chasing a hypothetical “cure”.

      I would never stigmatise someone who wanted to be neurotypical instead. I can’t imagine how it would begin to work, but I certainly wouldn’t stigmatise them. We all have our own paths to take. At the moment I do feel that my choices for support are limited by the consequences of an outdated stigma of autism in general.

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      1. I think you’re completely right to be concerned about the government forcing treatment. Some people might think that’s overly paranoid thinking, but it’s already subtly happening in other diseases.

        I have an autoimmune disease and the medications used to treat it can kill you (they are drugs that suppress your immune system). In order to successfully get disability payments for this disease, the government wants you to be on these drugs. So basically your choice is to be on toxic medication and die off early, or you get to live a longer life in poverty.

        I chose to not be on the drugs because I need to live as long as possible to care for my young boy (he has autism). I was denied disability for several reasons, but one reason was that I wasn’t considered “responsible or serious” about my disease, as evidenced by the fact that I refused to take these medications. How totally absurd!

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  14. I would “split the atom” and pick out the excrutiating pain I feel when a dog barks or a small child cries. I would wipe out the migraine headaches and high anxiety. I would go out freely in my community and interact with people instead of sitting home all day wishing my life had purpose. I wouldn’t change the way I see and photograph broken and used objects that most people would walk right past or my ability to write.

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    1. A forced cure is a terrifying thought. Being able to pick and choose to remove pains is completely understandable. I wouldn’t want to lose me. I wouldn’t want to lose my humanity and the way I see the world. I would happily lose the migraines. This is why I think finding a solution for certain symptoms is the way to go. Leave the autism alone and target the problems it can cause.

      I love that you photograph used objects. I have a great love for such things too. They bring me enormous joy. Thank you so much for your comment.

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  17. Your writing is amazing. I was diagnosed a few years ago and what you describe is so true. And I can’t exactly process how you are writing in such a clear and logical way about things that have always been called illogical. It seems like you are writing about me in a voice that I lost a long time ago.

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  19. i do not feel the need for a ‘cure’ for who I am either. My understanding of ‘cure’ has to do with preventing it. Among the research I’ve read, one theory is that spectrum is on the increase, because one cause of spectrum is environmental pollutants in the mother’s environment, especially when she is pregnant. I was born in a place colloquially called ‘Chemical Valley’.in West Virginia, US. Both of my grandfathers worked in chemical factories. The coal industry in the nearby hills also is a notable source of pollution. I know when my father was growing up that he played in a river full of coal mine run off. So would I use a magic wand to help prevent new children born in Chemical Valley to avoid the mutagenic damage that perhaps can cause spectrum? I would. Folks growing up there face so many extra challenges in life that I would not add one more to their list. I recognize your very valid point, Rhi, that perhaps those same children would not experience the same beauties and fascinations in the world, even though those West Virginia hills are magnificent. And that troubles me as a trade off to wish or not for another.

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    1. Interesting. Conversely, I grew up on an organic farm. It couldn’t have been a less ‘chemical’ environment.

      I would argue that avoiding potentially dangerous chemical pollutants is the obvious way to go, but not to prevent autism specifically, as that vilifies a neurological difference. If I had been born non-autistic, then that is who I would be and I would know no difference. If my parents had found out pre-birth that I would be autistic, and “cured” me of it, they would have destroyed who I should have been, and that would be immoral.

      It’s a dangerous narrative that autism is “caused” by poisoning of any kind. I’m not saying that it is not the case that for some that an environmental factor was key to their autism, but for many it will not be the case. It feeds the “diseased” and “broken” idea, rather than the “different” and “perfectly formed autistic” notion.

      So in conclusion, no one should be raised in poisonous conditions. Not ever. They are and that is wrong. I don’t see purifying the environment as “curing autism”. I don’t want to belittle anyone’s hardships, and I would never judge an individual who wanted to change themselves for whatever reason.

      Thanks for all your points.

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  20. One of my biggest heartfelt subjects. I feel we have given autism almost the wrong name due to the stigma attached to it, I wish we will find a way eventually where everyone can understand it properly , understand the energies and the amount of compassion and unconditional love learned here 😊 great post x
    aspiritualdirection.wordpress.com

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    1. Thank you 😊 my greatest hope is that the world wakes up and sees that autism is not a list of negative symptoms. Autism is who I am, the negative symptoms as caused by trying to function in a non-autistic world.

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      1. Wow that’s a very insightful answer. I hope this too, we will all get there together ! There is a lot of unresolved in the world that’s he problem, not with autistic people Xxx

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  23. I was diagnosed just under two years ago at the age of 50. At the time I thought the diagnosis was the answer to everything. Now I realise it has made no difference whatsoever other than giving me an excuse for being the failure I am. There are no pros or benefits to being autistic for me. If a cure for autism was announced tomorrow I would be first in the queue for it.

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    1. And that would absolutely be your right to choose, if it were possible. I’m sorry you’re having such a tough time. I don’t see being autistic as a pro or a con, just as I don’t see being non-autistic as a pro or a con either. It’s just a way of being. Sometimes life is hard no matter what. It’s often really unfair too. I hope things improve for you 💐

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  25. Wow….
    This is me talking..
    I never knew there were more people like me out there.
    Your words have grasped my heart and held it tightly, I can actually feel it right now.
    I wish you knew how important this is to me.

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  28. People in my culture feel like that. I accepted my son’s Autism and sought help from a young age. I can honestly say he is doing so well and I love him regardless of the Autism! If there’s one thing anyone needs to remember it’s: Autism is Acceptable.

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  31. Honestly, I wouldn’t want a cure. It would take away from what has developed me into the person I am now. Like, even with all the stuff I went through being autistic, I don’t think my life would be the way it is now if I got some cure for it. Besides, autism is the way the brain is wired. That means to cure it, they’d have to totally rewire your brain. An autistic person’s mind is on hyper drive their entire life. Usually, people’s thoughts and minds slow down as they age, I find my brain is only getting faster and I find it funny when I overthink myself into a cesspool.

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  32. This is a truly beautiful post. I’m happy that there is someone else who finds pleasure in all those small things that so often get ignored by most people.
    Even if that means that most people don’t like me… I also would never cure my autism. It’s just who I am. And I wouldn’t want to lose my unique way of seeing the world around me. :3

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    1. Thank you for your beautiful comment. We are very lucky in so many ways. Yes there are hard bits too, but that’s true for every neurotype 💐

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  33. I’m the mom of a 14yo autistic son and I’ve been reading a bunch of your posts tonight because I just need somebody who understands. I love this one. I have told my son many times that when he grows up he’s going to like the benefits of his autism so much he wouldn’t want to give them up to be like his NT peers, but this stage is very hard for him. Going on an all-family vacation in 2 days and he is bursting at the seams with stress. I wish there were a way to make it easier for him, but we’ve already planned to stay in our own cabin, take our own car, do things he wants to do, and he’s still a mess. Sorry. Just needed someone to talk to. Your writing is beautiful.

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    1. I wouldn’t go back to being a teenager if you paid me. It really is such a difficult time. You both have all my sympathy. It’s hard enough for anyone, but with autism in the mix it can make everything feel really overwhelming.

      It does get better.

      For the vacation is there a schedule that he can look at? Will he have the option to not join in on some days? That sort of thing can help alleviate the strain (you’re probably already doing it all, you sound lovely).

      Vacations can come with the pressure that you are supposed to be having fun, and if you’re not happy you are failing in some way. The truth is that of course everyone enjoys some bits and doesn’t like some bits, but when it feels like fun is a “rule” it can make even the good bits miserable as you wait to “fail” to be happy at something else. The fewer expectations, the happier we all are.

      I hope once you’re there and settled in to familiar surroundings that it all improves. Often the expectation and build up to change is the worst bit.

      You sound like a lovely family. I wish you all the best

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