John Elder Robison on American Autism research

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ASPartOfMe
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13 Nov 2017, 11:03 am

Sex, Lies, and Autism Research - getting value for our money

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The US government is the world’s biggest funder of autism research. For the past decade I have had the honor of advising various agencies and committees on how that money should be spent. Sometimes I’ve been pleased at our government’s choices. Other times I’ve been disappointed. Every now and then I turn to reflect: What have we gotten for our investment?

Autistic people and parents agree on this: The hundreds of millions we’ve spent on autism research every year has provided precious little benefit to families and individuals living with autism today. Over the past decade the expenditures have run into the billions, yet our quality of life has hardly changed at all.

It would be one thing if massive help was just around the corner, but it’s not. There are no breakthrough medicines or treatments in the pipeline. Autistic people still suffer from GI pain, epilepsy, anxiety, depression, and a host of other issues at the same rates we did before any of this research was funded.

I don’t mean to suggest that nothing has been accomplished. Scientists have learned a lot. They know more about the biological underpinnings of autism. Researchers have found hundreds of genetic variations that are implicated in autism. We’ve quantified how autistic people are different with thousands of studies of eye gaze, body movement, and more. Scientists are rightly proud of many of their discoveries which do advance medical and scientific knowledge. What they don’t do, is make our lives better today.

Why is that?

The answer is simple: Until quite recently, autistic people were not asked what we needed.

There are many reasons for that. Autism was first observed in children and no one expects children to have adult insight and self-reflection. When autism was recognized in adults they were assumed to be too cognitively impaired to participate in conversations about their condition. Finally, in the spirit of the times, doctors often assumed that they knew best. They were the trained professionals and we were the patients (or the inmates.)

So doctors studied every question they could imagine, and then some, seldom seeking our opinions except in answer to their research questions. They assumed they knew what “normal” was, and we weren’t it. Countless million$ went down the rabbit hole of causation studies, whether in genetics, vaccines, or other environmental factors. Don’t get me wrong – the knowledge we’ve gotten is valuable for science. It just did not help me, or any autistic person I know.

Millions more has been spent observing us and detailing exactly the ways in which we are abnormal. Only recently have some scientists began to consider a different idea: Perhaps “normal” is different for autistic people, and we are it. Again the studies enhanced the scientists’ knowledge but didn’t do much to help us autistics.

Then there are the educators and psychologists. They observed our “deviations” and then considered therapy to normalize us. That led to ABA and a host of other therapies. Some of those have indeed been beneficial but the money spent on beneficial therapy is just a drop in the bucket when considering what we taxpayers have funded overall.

Whenever this topic comes up at IACC (the Federal committee that produces the strategic plan for autism for the US government) the priorities of autistic people seem rather different than those of the researchers our government has been funding for so long.

Autistic people have many disparate needs, but they all boil down to one thing: We have major challenges living in American society. Medical problems, communication challenges, learning difficulties, relationship issues, and chronic unemployment are all big deals for us. The issues are well laid out and many.

Before autistic people began speaking out in great numbers all we had was parent advocacy. We should not dismiss that, and parents still have a role today, particularly in advocacy for small children and children who are older but unable to effectively advocate for themselves.

Even as we thank parents for their service, it’s time to recognize autistic voices (some of which are parents too) should be taking the lead.

As much as parents did for us, they also unwittingly contributed to harm. Parents misinterpreted harmless stimming and encouraged therapists to suppress it, leaving us scarred in adulthood. Many autistics of my generation remember being placed into programs for troubled children with parental encouragement in hopes we’d become “more normal.” We didn’t. Parents have given us bleach enemas and some of us have died from misguided chelation and other treatments to “cure” our autism.

I don’t blame parents for any of that. They did their best, given the knowledge of the day. But it’s a different day now.

For the first time, IACC has recognized this in the 2017 Strategic Plan Update. They say it’s time for a paradigm shift in how we do research. We need to focus on the needs of people living with autism today. That’s a realization that I appreciate, and it’s long overdue.



Bolding and underlining mine


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BTDT
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13 Nov 2017, 11:41 am

Delivering benefits to the needy is a very hard sell if we are talking about yet another government expenditure.



cyberdad
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13 Nov 2017, 3:53 pm

Autistic people and parents agree on this: The hundreds of millions we’ve spent on autism research every year has provided precious little benefit to families and individuals living with autism today. Over the past decade the expenditures have run into the billions, yet our quality of life has hardly changed at all.
John Elder Robison

Well he got that right!



leejosepho
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13 Nov 2017, 4:40 pm

Quote:
"In formulating this new Plan for ASD activities, the IACC has moved toward a paradigm shift in how we approach autism...

"Individuals on the autism spectrum today will remain autistic for the foreseeable future...

"...we must in the short-term translate existing research to develop effective tools and strategies to maximize quality of life, and minimize disability, while also ensuring that individuals on the autism spectrum are accepted, included, and integrated in all aspects of community life."

--from page 7 of Strategic Plan 2017

Maybe I am not hearing something correctly there, but I would hardly call any of that any kind of paradigm shift. For example: Will people on the spectrum tomorrow not also be remaining "autistic for the foreseeable future" and in need of the same short-term efforts said to be needed by people on the spectrum today?


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13 Nov 2017, 6:00 pm

It's about time someone said this, it's been the elephant in the room. Many thanks to John Robison for articulating this huge issue and to you APOM for this thread, which I have moved to this forum as it affects everyone on the spectrum, in one way or another.

I hope JR will contribute to this thread as he is a member here who posts occasionally. I second the spirit of his comments: a lot of research by NTs on autism in the past has been platitudinous, patriarchal, patronising, prejudiced and extremely gender biased. Some of the conclusions and discussions are so trapped in tunnel vision that no light ever gets in, nor do the researchers notice its absence. The sampling is highly flawed in most cases, because diagnostic criteria and procedure is flawed, and the paradigm that applies is a big issue that is very rarely discussed by AS people, though that is not surprising as relatively few will have studied the philosophy of scientific enquiry formally or informally.
It is likely that the same is true of the vast majority of the researchers.



ASPartOfMe
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13 Nov 2017, 7:18 pm

leejosepho wrote:
Quote:
"In formulating this new Plan for ASD activities, the IACC has moved toward a paradigm shift in how we approach autism...

"Individuals on the autism spectrum today will remain autistic for the foreseeable future...

"...we must in the short-term translate existing research to develop effective tools and strategies to maximize quality of life, and minimize disability, while also ensuring that individuals on the autism spectrum are accepted, included, and integrated in all aspects of community life."

--from page 7 of Strategic Plan 2017

Maybe I am not hearing something correctly there, but I would hardly call any of that any kind of paradigm shift. For example: Will people on the spectrum tomorrow not also be remaining "autistic for the foreseeable future" and in need of the same short-term efforts said to be needed by people on the spectrum today?


What they are doing is recognizing that there is no cure in the near future so the statement is saying make the best of a "bad" situation. The goal of not having autistic people remains. So this in a way is a lesser evil for them and us for different reasons.

I think most anti-cure people are too cocky about thinking a cure will not happen. I think between CRISPER-CAS-9 gene editing and identifying and slowing the autism before it starts via ABA that a cure or an almost cure for some "Autisms" will happen within the next 5 to 10 years.


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Last edited by ASPartOfMe on 13 Nov 2017, 7:39 pm, edited 2 times in total.

leejosepho
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13 Nov 2017, 7:31 pm

ASPartOfMe wrote:
The goal of not having autistic people remains.

...and that is why I say there is no paradigm shift: "a fundamental change in the basic concepts and experimental practices of a scientific discipline." (Wikipedia)


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B19
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13 Nov 2017, 7:39 pm

http://www.chronicle.com/article/Autism ... digm/47033

Excerpt:

In many areas of human neurodiversity, including autism, we still don't know the answers to many basic questions. There is still not even agreement on the basic definitions of autism, Asperger's, and related concepts. In the meantime we are applying lots of stereotypes and negative descriptions to autistics that we would not dream of using to describe racial or ethnic groups. It's high time that colleges and universities got out in the lead to fight these common prejudices. The rhetoric coming out of higher education needs to match up to the reality of higher education as a common avocation for autistic people.

We are still searching for appropriate metaphors and language to describe and explain human neurodiversity. For instance, we've moved beyond viewing autism as the result of "refrigerator mothers" —cold, distant —as was most visibly suggested by Bruno Bettelheim in the 1960s. We're just starting to move beyond defining it as a "series of impairments." If we call autism a "disorder," is that being humane and offering sympathy and aid, or is it judgmental in a way that stereotypes, lowers expectations, and ignores variation in outcomes?

But if it is not correct to speak of a disorder, what exactly is the sensible language and what are the accompanying conceptual frames? The commonly heard distinction between "high functioning" and "low functioning" ignores extreme variations in the skills of the autistic individual, and it also seems to classify a group of human beings as somehow unfit. When it comes to discourse on the autism spectrum, we should be humane, respect human difference and individuality, respect the need for possible assistance, and recognize the diversity within the spectrum, and all that without assuming that nonautistic ways of viewing the world are always the right ones.

The common public perception is that autism is about sick or diseased children, and it is up to the academic community to help correct that picture. If we look at the data, it seems easy to find lots of autistic children yet relatively hard, at least by the standards of common public perception, to find a commensurate number of autistic adults. For instance a typical figure suggests that the United States has about 500,000 autistic children, for a prevalence in the range of 1 in 150. That would mean that the United States also has 1.5 million autistic adults. (Those numbers are very rough approximations and still being debated.)

My belief is that the United States does in fact have more than one million autistic adults. But if there are so many autistic adults, the obvious question is: Where are they? Who are they? Are they all locked up in institutions? It is sometimes suggested that there must be a very recent "epidemic" of autism. But the epidemiological measurements of autism prevalence —if we acknowledge deliberate changes in diagnostic criteria, awareness, service availability, case-finding methods, and so on over time —do not indicate large unexplained increases. You could argue for a gradual increase in the rate of autism, as existing evidence cannot rule out all changes (I think the rate is more likely constant over time), but still the growth would be so incremental that, again, a sensible estimate would be more than a million autistic adults in the United States.

It's a little tricky to talk or write about the autistics who may work in your institution. If you work at a college or university, there is a good chance you are interacting with people on the autism spectrum on a very regular basis. Maybe the reaction of the reader is to draw up a mental list of people in the workplace and start applying various stereotypes to them. Maybe you'll be on the lookout at the next dean's meeting for people who exhibit "autistic traits" and then gossip about those perceptions to your friends.

That's human nature, but I'm suggesting an alternative tack. Embrace individualism. Question your stereotypes. Maybe even look in the mirror. When you're done, it's likely that you'll see far more talent, in far more unorthodox varieties, than you expected.



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13 Nov 2017, 8:21 pm

ASPartOfMe wrote:
I think most anti-cure people are too cocky about thinking a cure will not happen.

Maybe so, but then the opposite mindset of wanting autism gone or whatever still also exists...and yet yes, I do understand there is nothing wrong with society trying to be accommodating to some while nevertheless trying to "cure" others.


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B19
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13 Nov 2017, 8:54 pm

The cultural bias of the current "paradigm" is almost never noticed, let alone discussed:

https://blogs.scientificamerican.com/gu ... diagnoses/



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13 Nov 2017, 9:16 pm

B19 wrote:
The cultural bias of the current "paradigm"...

The linked article mentions the fact that "cultural expectations of communication and behavior...vary so much across cultures and across individuals", but I would guess the idea of being rid or free of dysfunction spans the globe.


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B19
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13 Nov 2017, 9:22 pm

If you read the whole of it, a different theme emerges.



leejosepho
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13 Nov 2017, 9:32 pm

B19 wrote:
If you read the whole of it, a different theme emerges.

I did read all of it and the part I quoted is from its closing summary. Cultural bias in the States might drive the idea of "cure" a bit harder where other cultures might be more tolerant or whatever, but that does not change the fact that no culture embraces the entirety of the autism spectrum as being desirable.


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13 Nov 2017, 9:33 pm

That wasn't my point at all, though I don't have the inclination to continue here.



leejosepho
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13 Nov 2017, 9:47 pm

B19 wrote:
That wasn't my point at all...

I did my best to read your clues.


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