Why is there no TREATMENT?!

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Yes, quite! If I could remove my sensory issues, difficulties with executive function and social fatigue, I absolutely would. My children miss out on a lot because I am so debilitated by autistic burnout (i'm not just saying that, it's true). I think I would go for a cure if I could though...I am not currently depressed, but I'm still who I am because of that experience. I figure I could still be me and be hypothetically post-autistic (in my hypothetical scenario I guess it would be BAP).

I am not saying anyone else should feel this way, btw. I'm just expressing how I feel.

There is treatment....but much less for adults than for children.

The “cure” for autism is elusive.....and very individual-based, like Mona and others stated.

Well when you have absolutely nobody to form a relationship with, when society judges and rejects you at every turn, when the prospect of socialising is about as appealing as spending a night in the wilderness with rabid wolves, you tell me this is not a critical disability?

I'd MUCH rather be half blind, or on one leg, than with AS!!

You guys seem to cope and God knows how. Maybe you're on higher levels of the spectrum? Yet I've traveled the world, ran organisations, done extreme sports, so I dunno...

I will say this: as the years of solitude increase then the idea of leaving this world earlier becomes hugely appealing. No doubt suicide for AS people is far, far higher, but maybe I'm wrong? Despite hearing all your accounts, part of me wonders if I'm the only one with this sh***y condition. Objectively, the comment about each person experiencing it differently is probably more accurate though.

Still, you say the factors behind AS are not understood but is this because of the brain's complexity or the lack of any real effort to find a cure. And yes, cure is what I meant. Name one funded medical effort to find a cure, led by leading dedicated doctors, and I will be amazed. Compare this to the millions - billions - that go into finding other cures and perhaps you can see the point I was trying to make? But wait, a cure isn't needed, is it...?!? Say that to someone who cannot live in society, who thinks of dying as a welcome event. I don't think some people really understand how debilitating and terrible AS can be.

The examples above are all about how the society reacts to the condition, not the condition itself...

About "the cure":
Medicine is no magic. To repair something, you need to know how it should work, which particular part got broken and which way.
There is no such knowledge about autism despite decades of research. The existing results indicate that the things all autistic people have in common, they also have in common with some portion of not disordered society (BAPs are officially considered neurotypical).

Sorry you feel that way justin101.

The simple answer to your question is numbers effected.

Autism used to be a rare condition that few people knew about until the movie Rainman.

Its been 70 years or so since the term autism was invented and it wasnt until 5 years ago in 2014 that scientists first examined an autistic brain to reveal too many synapses.

When i was a child in the 80s AIDS was going to destroy the world and you were made to believe the kid sitting next to you in class or your elderly gran might have it. There was a cure within 10-15 years!

Fast forward to 2019 and (official) numbers of ASD have exploded, now almost any adult knows of a child in their kids class, kid of a work colleague, someone down their street with autism. Now autism talk is everywhere in the media and local education authorities are going bankrupt here in the UK as they cannot cope with the extra special needs demands from schools.

This has probably spooked many in gov with the thought of hundreds / millions of dysfunctional adults unable to work or live independently stuck on welfare. So funding for research has dramaticly gone up both in europe and US.

I read most of what we know about autism was learned in the last 10 years since then there have been plenty of research - stem cell, cell danger response theory with suramin and feital transplant , genetics to name the main ones where results have been encouraging but more work needs to be done.Almost every couple of months now theres been news and findings in the field of ASD research.

Many will speculate that a cure would "change them" although theres no evidence to back that up. Many say its an "existential" risk without factoring the "existential" risk of remaining disabled and unable to live independently in a nation thats 21 trillion in debt that many ecconomists claim will not be able to pay its future liabilities.

Of course some will say they dont want a cure and that is their absolute right.

What i take issue with is when some use the royal "WE" when saying "we" dont want a cure acting like they are self appointed spokespeople to 100 million ASD sufferers. Of course you and i and many others are an inconvienient truth that reveals we dont all think the same way.

The closest to treating autism is treating your anxiety and learning social skills and occupational therapy for sensory issues and coordination issues and maybe behavior therapy and doing social stories.

I've tried some of the things mentioned, but they are more like treatments of the effects rather than the underlying problem. But even here there is a farce (and I recount my experience in the UK so not sure if it's the same elsewhere): you see a doctor or health professional, who simply refers you to another service that might provide a once weekly 1-1 talking session or groups, after waiting many months. Then it ends weeks later, because such things are 'time limited by funding'. My point is even these 'treatments' are sporadic and hard to access. Not to mention being extremely limited in effectiveness. Medication to tackle anxiety and depression is, perhaps ironically, easier to obtain. But again it just gives a 'numbing effect' to an underlying problem.

And yeah, I relate to those who say the problem is more society. I used to think that. Aspergers can actually be beneficial in some ways. But then humans, by definition, are social mammals. We have evolved to function in groups. To have a huge impediment to social interaction, and all that goes with it (relationships, employment, love, etc) makes having Asperger's a serious life-changing disability. Maybe it's ok for those who don't want a partner, friends, a place in society, or who have somehow gained these things without having AS. But now I'm sick of it and would literally give everything, all I own and organs on top, to be rid of this condition.

P.s what are social stories?

The whole point of treatment is learning how to deal with those problems. For example, I have anxiety so I had to learn to address the problem and stay calm and not get upset about it. Having a problem with getting the glue to come out, ask the teacher for help before you get upset about it and start flipping out you upset other students because of your meltdown. My son does this a lot when something always goes wrong and then I get upset and have shut downs too because of his drama. My mom calls them pity parties.

Social stories are just pictures you draw or use to tell a story in the picture. It helps the child learn that everyone has a different perspective, have their own story, it also teaches them that changes are part of life and it helps them identify their own feelings and it also helps them learn empathy for others and learn that other people feel differently than they do and this is also used with kids for behavior disorders too.

Here's how I've coped:

1) I worked as an electronic engineer back in the 1980's and early 1990's, back in the days when geeks were geeky, and engineers weren't expected to have "excellent interpersonal skills."

2) I now do programming from home -- albeit making a lot less money than a programmer who works in a corporate office.

3) I grew up before "Asperger's syndrome" and "high functioning autism" were known conditions, so I thought of myself as just a freaky person. I dealt with this by seeking out fellow oddballs and getting involved in various oddball subcultures.

4) Where possible, I've found ways to engineer social situations to accommodate my own and other people's social difficulties. (This is easier to do in oddball subcultures than in mainstream society, but should be doable even in a mainstream organization if one happens to be in charge of said organization.)

5) I live in a highly multi-cultural neighborhood, with people from all over the world, so I don't stick out nearly as much as I would in a neighborhood with one dominant ethnic group.

6) I have a boyfriend who was diagnosed with AS back in 2001.


What general kinds of organizations have you run? (Not asking you to be specific enough to risk breaking your anonymity).

I haven't yet run a formal organization, but I've been able to run a pen pal network (back when I was in college, long before the Internet became popular), then later some small online forums and some small in-person discussion groups.

Did you make a point of trying to run your organizations in such a way as to accommodate your own and other people's social difficulties? (Did it even occur to you to try to do that?) Or did you just try to act as normal as possible?


You are correct -- especially for those autistic people whose sole way of trying to cope is by trying to act normal.

The suicide rate is also high amongst, for example, LGBT people. But this has improved greatly in places where LGBT people are better accepted.

I'm bisexual. One of the oddball subcultures I got involved in when in college was the LGBT rights movement (then just known as the gay rights movement) -- which, subsequently, has succeeded beyond my wildest dreams. Never did I expect that same-sex marriage would become legal within my lifetime.

My life experience gives me great hope for a world in which autistic people can thrive, with accommodations, without a complete "cure" (although it would, of course, be desirable to have better treatments, especially for the more severely disabled autistic people).

In order to achieve such a world, we first need to build a much bigger and better-organized autistic community (subculture) than now exists. People like you and me, with our experience running groups, are in an excellent position to do just that. (See the separate thread Building the autistic community?, especially my posts on page 2 of that thread. See also the threads Autistic-friendly workplaces and Autistic-friendly social skills vs. blending in with NT's.)


Google "autism research" and you'll find lots and lots of efforts to determine the causes of autism and possible cures.


If you feel inclined to do so, feel free to tell us more about your specific difficulties. Maybe you can get some worthwhile advice here on better ways to cope?

Last edited by Mona Pereth on 01 Sep 2019, 11:33 am, edited 6 times in total.

There's "no evidence" only because the cure doesn't yet exist. By the same token, there's also "no evidence" that a "cure" WON'T have very bad side-effects.

But it pretty obviously WOULD change us very profoundly. How could it NOT do that?


Many of us could thrive and live independently (or at least semi-independently) with better accommodations.

IMO research should focus on those aspects of the more disabling forms of autism that make it impossible to live independently even with accommodations.

FWIW, I once put up notices and started a group working on appropriate technology for themselves and each other. I began each meeting with a call for nominations for chairperson, and started getting "get on with it" back. It took about two hours a week, and the stress was maybe 20% of the reason my whole life blew up. They then found another chairperson.

To help handle the crisis, I moved to an area with declining population and consequent cheap houses.

I had about a year in partnership with someone who really wanted to see my design work get built, and took on the more routine and people-oriented jobs. My abilities went to near-savant level that year, and I tried to re-create the conditions for decades. Learning the helpers jobs leaves me with no special ability, and doing them remains hard for me.

Hans Asperger first championed us as useful defectives, and I think that is the best perspective. The "no two alike" seems to match an analogy using the popular expression "He's got a screw loose upstairs." Imagine a box with over a dozen adjustment screws in your head. NTs have them all set about the same. AS involves having some of them far off the usual setting, and very hard to change now. If only a few are loose, the plastic brain re-wires itself for a decent work-around. If most are loose, we can't even talk, but may still have major abilities. If more are working, the selection of which ones produces very different results. Therapists can teach work-arounds, but none are close to universal.

I guess it's a bit similar to why I can't do science when I am responsible for my family... Parenting eats up all my "spoons". I'm sure in this partnership you could put all your energy into things you do efficiently instead of wasting them on coping and this created savant-like performance.

I'm in counselling/therapy working with someone who only deals with people on the spectrum. Her methods are very focused on our brain types and her methods are very helpful.
The areas we work on are curbing anxiety and building self esteem which has been helpful.
Overall I love and appreciate my own view of the world and wouldn't want it altered with medication or a "cure."
Some look at the "cure" approach and liken it to how there was a time when people were searching for a cure for homosexuality. It turned out it was much better for everyone to accept people for their desires and that made everyone happier.
Society needs to be more open minded with more of a "that's none of my business" attitude and everyone on the planet will be happier and many people on the spectrum will go from not being able to tolerating life to perhaps finding some joy in it.

HIV / AIDS has never been cured. Better treatments, yes, but no cure. Matter of fact, I don't think any virus has a true "cure," anti-virus vaccines are the best modern medicine can do to mitigate or prevent viral infection.

For Asperger's, it's neither a virus nor a disease, per se, though it is very socially debilitating. When it comes to neurology, modern medicine is still very much in the days of leeches. They can't rewire or reshape brains and are still learning just how complex the brain is.

Things like OCD, dyslexia, sociopathy can't be cured either. Brain wiring can't be re-wired.

That said, there are some medications some people here take that seem to help them. There was one (if someone remembers, say something) that made the user feel both alert AND relaxed (and more confident) by extension.

I think treating symptoms of Asperger's is your best approach. Sadly, many doctors who only see you for a short time are reticent to prescribe much of anything and often think it's "all in you're head." They're partly correct.

People underestimate how much their brain & personality changes throughout their lives anyway. I’m a completely different person to the man I was at 18,30 even 10 years ago. There are ex Kul Klux clan members & ex terrorist sympathisers, criminals that have completely changed their views and personality with age and experience. Some have found god.

Then there`s fixed memory it’s a neurological fact that memory changes too depending on your feelings about the people there and what’s going through your head at the time, for example your memory of a great holiday with a partner / friend would change in the future if you found out they cheated on you or you later fell out of friendship with them for example.



AIDS is as close to curable as it can get without being cured. It was revealed here in the UK that its better to have HIV than Diabetes for life span. In fact, with the right drugs you can live very close to a normal lifespan HIV+. Compare that to what life in the 80`s was like with it.

My apologies in reducing your position down to this sentence but it seems your approach to the situation all operate under this assumption which seems rather impossible.