what I think is wrong with Autism $peaks

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Okay, let me just lay it on the table:

Autism $peaks spends very little of its money on actual services for families and individuals on the spectrum.

Do they view stimming as usually part of the solution, and not as part of their problem? For example, do they understand that often stimming helps with sensory issues. And please understand, I'm all in favor of the public vs. private distinction.

And as we as a human society delves into the causes of autism spectrum, one of the earlier things likely to be found is genetic markers, which likely will lead some potential mothers to get abortions. Straight up, this is an issue. And it takes a lot of wisdom to know how to deal with it, and I don't see Autism $peaks dependably having that wisdom. For example, I think it's kind of a race between the genetic information which will come and providing services and education and inclusion to families.

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I think one of the better critiques of this crappy organization is the letter by John Elder Robison when he resigned, and later on I'll try and pull some quotes.

http://jerobison.blogspot.com/2013/11/i ... peaks.html

I studied genetics in college, admittedly quite a few years ago. My general sense was that reliable gene therapy is years away, even for conditions caused by one gene, and not several genes, as autism is believed to be. Right now, the main use of isolating "autistic genes" would most likely be to abort autistic fetuses. I will let you decide how you feel about the morality of this. Isolating the problem genes or mapping how an autistic mind is different may be relevant some day, but not much use to autistic people and their families in the near term. I think scientific research is better sponsored by federal government agencies and universities, where large studies and rigorous experimental protocols can be best managed. I think charities and local governments are better suited to managing family services, perhaps coordinating the use of smaller federal grants. Local people know best what their communities need, and where their shortfalls are. "Cure" advocates are giving families false expectations, that if they can throw enough expensive therapy, meds, vitamins, and research at autism, a cure is right around the corner. It may be that if a cure (or effective treatment) arises, it may only work in early intervention, at least at first.

Our society seems to have fallen into a rut of pharmaceuticals first--just give us a pill and fix it. The real solution is more likely to be more complex, requiring a team of people working with the families.

cannot post because of this awful Cloudflare

I mean, I cannot post anything long and thoughtful

or even cut and paste

I have hopes that we will have large, prosperous Spectrum Rights organizations which could fund research using less than 10% of our money without hardly breaking our stride. And I agree that most of our money should go to direct services, lobbying, various creative enterprises, etc.

I also agree that preaching false hope to families is a bad thing to do.

In the above link, John Robison says autism brings both gifts and disabilities. And that's the way I look at it.

Agreed. I've seen several programs lately on TV about how many parts of the country have very little support services for families with autistic children, and practically no services for autistic adults. Even fairly independent adults can use some services, like job coaching, executive function training like managing a budget, and social skills training. Nonverbal adults with more severe sensory issues face a very uncertain future.

Scientific research can also go toward other things besides a cure. Could medication help with sensory issues? Why do we have sensory issues? Could there be more effective forms of therapy for children to deal with behavioral issues or self-injury? What are the most effective types of education, and how or when should children be mainstreamed? What kinds of technology can help with communication?

How about social programs to combat bullying (not just against ASD people)? Bullies are found to often come from abusive homes. Can something be done to help them and their parents find more constructive outlets for their feelings?

And not just coaching to help me with job skills and executing functioning issues, I'd love to have an organization with vetted volunteers who actually pitch in and help with some of the leg work and the nuts and bolts.

For example, if I were a business executive, I could hire an executive search firm to do much of the actual work. Well, could we have Spectrum Network Organizations which could do this? Not right now, but maybe in the future we can.