In search of truce in the autism wars

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19 May 2019, 2:12 am

Trying to avoid getting argumentative (I seem to realise this an unpleasant trait I have) but;

John Elder Robison was only diagnosed when he was 40 and was unaware there was anything wrong with him in his younger years as he went through three marriages. Nothing in his biography suggest low function?

Robison started the "Autism rights movement" which I already know has been criticised as that the majority of the members are "high-functioning" or have Asperger syndrome and do not represent the views of all autistic people. I have watched some of his videos and he has a habit of using "asperger" in his talks rather autistic (probably unconscious bias on his part) and focuses on highlighting the benefits Aspergers brings to society (which I do agree with him)
https://www.theneurotypical.com/relationships.html

I am aware this movement has made a conscious effort to address the lack of diversity in the neurodiversity movement by recruiting high profile autistic people who were born low functioning so I think this is a constructive step forward in being more inclusive.

Mona Pereth
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19 May 2019, 4:03 am

Again, Robison was NOT the founder of the autistic rights movement. The autistic rights movement was founded back in the early 1990's by Jim Sinclair and some friends thereof -- please see History of ANI. Other early advocates of neurodiversity included Temple Grandin and Michelle Dawson -- both of whom, like Jim Sinclair, had been diagnosed with autism (not Asperger's) as children. Robison didn't get involved until later.

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ASPartOfMe
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19 May 2019, 9:35 am

There were violent meltdowns and discipline issues in his childhood that are associated with if not with “low functioning” not with socially awkward genius Aspies, not dissimilar to Temple Grandin. And he pretty much always knew he was not normal. What he and nobody knew was that he was autistic.

Look Me In The Eye Summary

Quote:

John Elder Robison’s 2007 New York Times bestselling memoir, Look Me in the Eye: My Life with Asperger’s,tells the story of the author and his experiences, beginning with his years growing up in the 1960s with an awareness of not fitting in, but not having an explanation as to why.In those years, a diagnosis of Asperger Syndrome did not exist in the United States.While John displayed unusual behaviors that added to his being viewed as an outcast, his alcoholic and abusive father and his mentally unstable mother made his situation significantly worse.Before the publication of Look Me in the Eye, John was introduced to readers via a short description in the popular Running with Scissors written by his brother Augusten Borroughs. Publishers Weekly called Look Me in the Eye a, “thoughtful and thoroughly memorable account of living with Asperger’s syndrome,” and adds that the author, “succeeds in his goal of ‘helping those who are struggling to grow up or live with Asperger’s.’”

Very early in his life, John displayed behaviors that made it obvious he was in some way different from other children.At the age of three, another child with whom he was playing added a red block to a stack of blue blocks that John had made.This simple interaction prompted John to hit the other child.By the time he entered nursery school John’s inability to interact with other children caused them to stay away from him.Not only did he not possess the skills to communicate with the others “normally,” but in addition, he did not understand things that other people said to him, so he frequently responded in ways that made no sense to the others or were deemed inappropriate responses.The frustration he felt from these occurrences manifested itself as violence, which became part of his character makeup.He knew something was wrong with him but was not able to figure out what it was.

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Last edited by ASPartOfMe on 19 May 2019, 2:12 pm, edited 1 time in total.

Mona Pereth
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19 May 2019, 11:04 am

As for possible ways to heal the rift: I have some thoughts on this that I'll share in the next day or two. Busy now.

cyberdad
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20 May 2019, 2:21 am

I am legitimately curious why there is a rift in the first place?

Most parents of autistic kids don't really have the luxury of time to get to know other parents of autistic kids or for that matter anyone else with autism? (except perhaps online forums)

Is this a rift or some horrible misunderstanding?

Mona Pereth
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20 May 2019, 2:56 pm

To get a feel for the origin of the rift, I would suggest that you read the following book review by Ari Ne'eman, founder of the Autistic Self Advocacy Network (ASAN): The errors — and revelations — in two major new books about autism. (The books reviewed are NeuroTribes by Steve Silberman and In A Different Key by Caren Zucker and John Donvan.)

Mona Pereth
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20 May 2019, 4:19 pm

ASPartOfMe quoted the article The fight between those who define autism as a medical condition and those who see it as a mere difference has reached vitriolic levels. Can the two sides come together to support all autistic people?:

Quote:

The bulk of research funding in the U.S., U.K. and elsewhere goes to studies of biological mechanisms and genetics. In 2016, for example, 59 percent of the funds in the U.S. went toward understanding the biology or causes of autism or preventing certain aspects of it. By contrast, studies into co-occurring conditions, services and support garnered 23 percent — and yet this is the more pressing need for people on the spectrum, neurodiversity advocates say.

That's an awful lot of mney to be spending on genetics research. I don't think this best serves the needs of people ANYWHERE on the autism spectrum.

I think the budget for genetics research should be cut down to no more than 10% of the total autism research budget. That would free up a LOT of money for research into the specific problems of the most severely disabled autistic people, such as:

1) More and better ways to teach autistic children to talk, for those unreachable by current methods.

2) More and better ways to help more autistic children learn to communicate via AAC, either instead of or as part of a path toward spoken communication.

3) For those unable to talk due to motor control issues, research into more and better possible ways to alleviate their motor control issues. (Such research may benefit other autistic people too; many autistic people have motor control issues to some degree.)

4) More and better ways to uncover and develop latent intellectual abilities in at least some of those who are now deemed to be intellectually disabled.

5) The causes of self-injurious behaviors, and better ways to identify and alleviate those causes.

I think that at least 50% of the autism research budget (i.e., the same money that could be saved by cutting the autism genetics research budget from 60% down to 10% of the total) should focus on the specific problems that cause the most suffering for the most severely disabled autistic people and their families.

I hope the above is a research agenda that would be agreeable both to most neurodiversity activists and to most parents of severely disabled autistic people.

I'll have more to say later about possible ways to heal the rift, but, in the meantime, I would appreciate comments on the above.

kraftiekortie
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20 May 2019, 4:55 pm

Yep. Finding the causes of self-injurious behaviors. The person who engages in this must be quite unhappy.

Find ways to alleviate what's causing the self-injurious behaviors.

ASPartOfMe
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20 May 2019, 6:52 pm

We never cured visual or hearing impairments that inhibit communication we found treatments and workarounds that lesson the impairing elements.

cyberdad
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21 May 2019, 5:00 am

Mona Pereth

some interesting points, particularly about funding disparity...

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21 May 2019, 9:42 am

Mona Pereth wrote:

I think the budget for genetics research should be cut down to no more than 10% of the total autism research budget. That would free up a LOT of money for research into the specific problems of the most severely disabled autistic people, such as:

1) More and better ways to teach autistic children to talk, for those unreachable by current methods.

2) More and better ways to help more autistic children learn to communicate via AAC, either instead of or as part of a path toward spoken communication.

3) For those unable to talk due to motor control issues, research into more and better possible ways to alleviate their motor control issues. (Such research may benefit other autistic people too; many autistic people have motor control issues to some degree.)

4) More and better ways to uncover and develop latent intellectual abilities in at least some of those who are now deemed to be intellectually disabled.

5) The causes of self-injurious behaviors, and better ways to identify and alleviate those causes.

Why would you want to cut funding of genetic research into what is largely a genetic condition? From the rest of your post you seem to think that research into how genes express themselves and shape the brain won't help autistic children communicate?

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21 May 2019, 1:11 pm

Dvdz wrote:

What is the ultimate goal of giving such a high priority to genetics research? I can think of two possible holy grails, both problematic:

1) Human genetic engineering. A big ethical quagmire in itself, and not just for neurodiversity activists.

2) Epigenetic medicine. Two problems with this, EVEN IF you are in the camp of people who would like a total "cure" for autism: (a) There are so MANY different genes that have been found to be associated with autism, including random new mutations as well as inherited genes. Hence any attempt to "cure" autism by suppressing particular genes, or by somehow simulating missing genes, would like a game of whack-a-mole at best. It would never be able to stay abreast of all the many autism-causing genes, and the pharmaceutical companies would probably not find it profitable for any but a few relatively common ones. (b) As far as I can tell (correct me if I'm wrong, any genetics experts out there), the entire field of epigenetic medicine is still in its infancy. And it is inherently very complicated, given the need to avoid interfering with the body's already-existing epigenetic mechanisms. For now I think the field of epigenetic medicine should confine itself to things like cancer treatment.

Yes, there are other kinds of things that can be learned from autism genetics research, which is why I don't favor cutting it out of the budget altogether. But I don't think it should be anywhere near the top priority.

I think it would be more effective, AS WELL AS more respectful of human diversity, to focus more attention on developing better understandings of neurodivergent educational psychology and of how the world is experienced by people with various kinds of autism.

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21 May 2019, 5:38 pm

Mona Pereth wrote:

So, just to make sure I understand you, you don't think genetic research should be the top priority because:

1) It might lead to an ethical quagmire.

2) It's too difficult.

3) There is no profit involved so any research wouldn't lead into affordable treatments.

4) It's still in its infancy.

5) It's not very respectful of human diversity.

Is it a good reason to cut funding to genetics research because the knowledge gained from it might be used in an unethical manner? Is it a good reason to cut funding because the whole field has just started and it seems too complicated? Because it might not lead to affordable treatments?

What makes you so sure developing better understandings of neurodivergent educational psychology would be more effective than genetics resesarch?

cyberdad
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22 May 2019, 1:23 am

Dvdz wrote:

I don't think it's necessary to cut funding to polygenic autism genome research but perhaps matching of funds toward autism assistance would be desirable.

I think Mona Perith is insinuating that the disparity in funding might be the influence of "Autism Speaks" cure autism movement. The nuerodiversity movement made up largely of Aspies is uncomfortable with genome research which they believe will lead to prenatal genetic testing.

cyberdad
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22 May 2019, 1:25 am

Mona Pereth wrote:

[
Yes, there are other kinds of things that can be learned from autism genetics research, which is why I don't favor cutting it out of the budget altogether. But I don't think it should be anywhere near the top priority.
I think it would be more effective, AS WELL AS more respectful of human diversity, to focus more attention on developing better understandings of neurodivergent educational psychology and of how the world is experienced by people with various kinds of autism.

Wouldn't it be simpler and less disruptive to just ask for more money for educational psych rather than trying to divert existing money from genome research?

Mona Pereth
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22 May 2019, 5:01 pm

cyberdad wrote:

Wouldn't it be simpler and less disruptive to just ask for more money for educational psych rather than trying to divert existing money from genome research?

The question I'm addressing is how the TOTAL budget for autism research should be divvied up. The total budget cannot be more than 100% of itself. Of course it might be possible to lobby for a greater total budget, but the issue I am addressing is what the priorities should be within the total budget, whatever that total might be. My point is that there should be a lot LOWER priority given to genetics research, and much HIGHER priority given to the specific problems of the most severely disabled autistic people, including educational psychology for same.

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