My letter to autism speaks. I reject a cure.

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It'll be nice if they find a cure for all the autisms.

But it will take a while.

Any "cure" will have to go through years of testing, and at least 3 stages of double-blind-type studies.

And there must one "cure" for one "cause." That one "cure" will not cure the other "causes."

I would still emphasize the mitigation/amelioration of negative symptoms, because autism exists in real time. And we have to make people more comfortable in life NOW.

I agree with Johnnyh here.

I agree with EzraS here and in general.

And I nominate kraftiekortie to represent many of us with Autism Speaks or other organizations working with autism. He seems to understand many of us here.

Kraftie would be a good leader, he has a moderate view that gives attention to both sides.

Waterstar, I think it's a great letter!
Beautiful, heartfelt, and exactly what needs to be said, I reckon. You're obviously a lovely, kind, strong and intelligent person..and since these are exactly the qualities most needed by the world and everyone, your letter is spot on

Agree. Also agree with the others, I love your balanced approach

First you speak of yourself and your wish not to be cured, but then you say "we" don't want to be cured, which is not justifiable. Maybe other people do want a cure. You specifically mention the special therapy and needs you have, not everyone wants to deal with that. There is currently no cure, so it's not like there is a danger of anyone curing you against your will. Even if a cure were to exist, it would surely be voluntary for adults. I'm not sure what the point of your letter is. Do you want them to stop working on understanding what autism is? And what possible treatments there could be? That sounds anti-science to me. And no one cares that you like long walks on the beach or snuggling with your pet ferret. Stick to the issues.

Re. "And no one cares that you like long walks on the beach or snuggling with your pet ferret. Stick to the issues."

I virtually always care about snuggling with ferrets, cats, dogs, or significant others, find that it is relevant to quality of life for many people, and ridiculous but real research shows that many people generally focus better after cat videos.

But anyway... thinking about the 400+ genes currently thought to be related to different "flavors" of autism with regards to our species' evolutionary history is interesting to me.

Not everything that benefits an individual's evolutionary fitness, a family's overall reproductive success, whatever grouping or time scale one is examining, is necessarily pleasant to that individual.

Just the fact that we all age and die is a perfect example. It's generally been "good" for genes' "success" for organisms to have variations on that mechanism, but we don't generally like the process!

It's quite possible that many of the genes linked to autism confer benefits to individuals' or groups' "fitness", though not necessarily all the genes. The one study I saw recently that found no benefit seemed to group all genes together, and who knows what interactions with other factors might exist...

However, to bring this back to some random, made-up example... suppose 5000 years ago, one clan had some people with a "mild" autism gene that helped them "think spatially", improve their farming approach, grow more food, and suppose they then had more kids survive than other groups of humans without that gene... perhaps this gene also made those folks dislike noisy clan parties and leave before they shut down. Maybe that wasn't really a problem then. Perhaps in some cases the unusual cognitive approach to some crucial issue more than compensated overall... In a clan or tribal situation, contributions to the group might have been highly valued, eye contact in some cultures is different anyway... and ability to deal with obnoxiously loud rock music coming from a nearby student's apartment might just not have been so crucial.

I like the letter you've written. It's a very beautiful letter. I hope the people at that organization take the time to read it.

Yeah, you nailed it.

She also glossed over the numerous low functioning autistic people who want to be free.
I also think autism makes people too blind sometimes to what they really are missing out on or what people really think of them or their ideas.

Also we then again get this nonsense about spatial thinking and how autism is beneficial for survival. Tsk tsk. So how would a low functioning severely autistic person help out the tribe? How? Also many autistic people struggle with image blindness, not everyone is like Temple Grandin. Also rigid thinking, literal mindedness, poor problem solving, and inability to multi-task is the opposite of creativity! Temple Grandin is some savant, she isn't some master thinker who actually knows what is going on, she just moves her hands and the result occurs!

And autism being part of a person's essence? So would broken limbs be part of someone's essence too? You can say giving someone that is deaf the ability to hear is removing part of their essence? Is being addicted to special interests, very easily sent into a meltdown, and unable to bond or connect properly with other people something to be proud of?
Is using up extra resources because of a disability something to be proud of?

There is no "neurotribe". Everyone should get over it! And listen to Benjamin Alexander or Sue Rubin for once, stop fawning over Temple Grandin!

Edit: To those who believe it would be genocide to eradicate autism:
Should we continue to keep polluting, encourage smoking, and keep pushing dangerous drugs?
After all, if all these increase the likelihood of autism, would it be a crime to stop these from happening as that would prevent many people from being born autistic?

Thank you. I didnt post this to start an argument here. Although i guess its inevitable to a certain point. I just want people to know that there are some of us with autism who are proud of who we are and our lives are something we are happy to be autistic in. If they wish to support us there are far better ways they could be spending their time and money. Anyways thank you for your support. If you could print out my letter and sharenitwith others id apprciate it.
@cockney rebel, thank you. Please print and share my letter im ver happy to know at least some people here support me and my views and im hrateful for that. Dont let anyone change your mind. As for those who disagree here is a link to an article ( not written my me) that i found and it got me thinking about this issue even more deeply than i already was and it really struck me as a message that needs to be shared. As for what i want? Yes i want them to stop trying to "treat" or "cure" autism, and onstead focus their efforts on understanding the experiences of those with autism, making accomodations, and starting to teach those with autism to love and accept it as a large part of who they are. In other words. Acveptance is the cure. But again the point of this post is to thank you both or your support. Dont let those who ignorantly view us as a burden change your views. thank you.

http://everydayfeminism.com/2015/06/pus ... messed-up/

If anybody tries to 'cure' me, they can kill me first. I'll just cease to exist without aspergers. It's who I am. It's hell to live with in a NT driven world, but I wouldn't have it any other way.

I wish the less functional autistics could be helped, but don't try to eradicate an entire group

I've always been told more or less that the very fact that I don't want a "cure" proves how much I need it.

By the way, why not give neurotypicals the option of being "cured", too? After all, there are also low-functioning neurotypicals, or whatever low-functioning non-autistics are called these days.

Hey waterstar as much as I am against the idea of neurodiversity I really like your letter. I feel that in the past Autism Speaks has misrepresented people with Asperger's and High Functioning Autism and to get a letter like this may be really helpful as it helps to dispute the narrative they have been trying to paint in the past which is that Autism even in its most High Functioning forms is like a monster.

I wish not for any cure of my own self however, if another that persons is quite in the legal right to choose that action or decision.

@Arachnids and @Spiderpig exactly. And those of us who want to stop this ridiculous "search for a cure" need to stand united. Otherwise nothing will change. I am incredulous that they continue to pursue this "cure" when a cure already exists. It's free and it's already here. It's called teaching people with autism to love and accept and be happy with who they are. Of course many low functioning autistic people want a cure. This I feel is because they have been told all their lives that they are some how lesser, that they are broken and a burden because of their autism. This is simply not true and I really would like to caution, especially to parents and spouses of those with autism, that it's not fair. Parents/spouses talk about what a burden they're autistic children/spouses are moaning about how hard it is for them, but parents it's not about you. It's about your child/spouse. Read that again. NOT ABOUT YOU. Not about what you think or feel or want. It's about what your child/spouse thinks, feels and wants. So stop teaching them that they are broken or diseased or lesser or a burden and instead encourage them to love themselves and love their autism as a gift and part of who they are. Logically this makes far more sense as it's something we can do right now, today and use the money for a better purpose than searching for this cure that frankly is not needed. All people need to Stop the oppression and start loving themselves and each other properly.