John Elder Robison on the need for Autistic researchers

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ASPartOfMe
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11 May 2017, 3:47 am

Why autistic people like me need to help shape autism science

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There’s a widespread view that autistic people need to “get scientists to listen to us,” and that “scientists need to stop ignoring autistic people.” That hasn’t been my experience at all. I first got involved with autism science when researchers from Harvard and the University of Washington tracked me down following the release of my first book and asked for my perspective on proposed work. Since then, autism scientists have welcomed me into their groups, answered my questions, sought my advice and paid attention to it.

Ten years ago, the director of the National Institutes of Mental Health invited me to serve our government in a similar capacity. With his support, and the encouragement of others in government, I have been proud to do that. Since then, I’ve been joined in this work by other autistic people. We’ve discussed hundreds of proposed research studies, and it has been gratifying to see some of them funded, with our ideas and suggestions integrated into research.

A larger movement now aims to recruit more so-called autistic advisers, and to encourage every researcher to seek input from autistic people when structuring studies. “Ask an autistic person,” has become a common refrain in the autism science community.

Ten years ago, the director of the National Institutes of Mental Health invited me to serve our government in a similar capacity. With his support, and the encouragement of others in government, I have been proud to do that. Since then, I’ve been joined in this work by other autistic people. We’ve discussed hundreds of proposed research studies, and it has been gratifying to see some of them funded, with our ideas and suggestions integrated into research.

A larger movement now aims to recruit more so-called autistic advisers, and to encourage every researcher to seek input from autistic people when structuring studies. “Ask an autistic person,” has become a common refrain in the autism science community.

I do not share Mr. Robison's positive view of the scientists researching autism. I regularly post results of studies and what I often see is an almost daily new "link" to autism designed to be clickbait based on a couple of dozen people studied. The "links" often show the scientists only have a partial or peripheral understanding of the autistic experience.

An exception to the above seems to be studies coming out of Sweden. They often involve many thousands of people and IMHO reflect some uncomfortable realities I would rather not here about.

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Adamantium
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12 May 2017, 3:51 pm

ASPartOfMe wrote:

An exception to the above seems to be studies coming out of Sweden. They often involve many thousands of people and IMHO reflect some uncomfortable realities I would rather not here about.

This is intriguing. Can you elaborate on your understanding of those realities? Or would it be too unpleasant to contemplate them?

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ASPartOfMe
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12 May 2017, 7:27 pm

Large Swedish study casts doubt on autism ‘epidemic’

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according to a study of more than 1 million Swedish children.

Study: Antidepressants not as harmful to pregnancy as we thought

Quote:

the study, conducted in collaboration with researchers at Harvard T.H. Chan School of Public Health and at Karolinska Institute in Sweden, analyzed data on all live births in Sweden from 1996 to 2012.

Increased Risk for Substance Use-Related Problems in Autism Spectrum Disorders: A Population-Based Cohort Study

Quote:

Using Swedish population-based registers we identified 26,986 individuals diagnosed with ASD during 1973–2009, and their 96,557 non-ASD relatives.

People with autism are 'dying younger,' warns study

Quote:

A recent study in Sweden showed the average age of death for a person with autism spectrum disorder (ASD) is 54 years, compared with 70 for matched controls.

The study used records of 27,122 people diagnosed with ASD to look at how long they lived, what the main causes of death were, and how their chances of death were affected by whether they were male or female and the type of autism they had.

Adamantium
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12 May 2017, 8:28 pm

Thanks.

I wonder if the American research is contaminated by the twin evils of runaway academic costs and runaway healthcare costs in a way that Sweden is structurally less prone to.

The life expectancy thing is depressing.

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IstominFan
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08 Jun 2017, 4:19 pm

I just read that the life expectancy for people with ASD is 54 years? I'm 52 now. That's sad.

TheRedPedant93
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09 Jun 2017, 3:19 am

ASD's don't effect life expectancy directly per se, but indirectly due to the accumulated risk of suicide that is ascribed from the multifarious psychiatric co-morbidities (Anxiety Disorders like OCD; Social Phobia, GAD and Panic Disorder; Pediatric Emotional-Behavioral Disorders, Manic Depressive Disorders (Affective Mood) like Clinical Depression; Bipolar and Dysthymia, Borderline Personality Disorders, Psychotic Disorders like Schizophrenias & Schizo-affective Disorder, Tic Disorders, Eating Disorders (females predominantly) & even Substance Abuse) that are more prevalent on the ASD spectrum (slightly to predominantly common respectively) that a great deal of AS/HFA individuals endure, yet I have a classic case of AS and have never suffered any single mental illness/psychiatric disorder (these mostly develop in adolescence) in my life very fortunately.

Variables like late diagnosis as well as not receiving the pertinent support services & interventions are significant risk factors leading to the development of a psychiatric illness & may be exacerbated by a proliferation of other psycho-social factors.

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kraftiekortie
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15 Jun 2017, 6:54 am

Autism, by itself, doesn't cause reduced life expectancy. The life-expectancy figures do not always reflect individual reality.

AspieUtah
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15 Jun 2017, 7:15 am

kraftiekortie wrote:

Autism, by itself, doesn't cause reduced life expectancy. The life-expectancy figures do not always reflect individual reality.

Indeed. As a genealogist, I learned many years ago that people living in the American 1800s didn't simply die at age 35 years (or whatever artificial time described by statisticians), but, rather had a certain percentage of children who, for a variety of reasons, died in infancy or childhood. These deaths changed the overall death rate. In the hope that enough children in a family lived to adulthood (to continue the family farm or business), families often included a dozen children (expecting that three or four might die young). But, by no means did every American individual die as young adults. Otherwise, how would President Lincoln and poet Walt Whitman live to their advanced ages?

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kraftiekortie
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15 Jun 2017, 8:54 am

The life expectancy in sub-Saharan African nations is usually somewhere between 45-50 years of age.

This is, primarily, because of high infant mortality.

Many people live to their 80s, 90s, or beyond in Sub-Saharan Africa.

It is stated that the life expectancy during the Industrial Revolution in England was the late teens. Obviously, most people didn't die in their late teens even in those days.

Just because the supposed life expectancy for autistic people is 54 years----doesn't mean YOU will die at 54.

cyberdad
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16 Jun 2017, 6:15 pm

ASPartOfMe wrote:

The "links" often show the scientists only have a partial or peripheral understanding of the autistic experience.

John Elder Robinson's proposal to include more autistic researchers is fine so long as those individuals remain objective. I think there is a breach of scientific protocol where the scientists intends to provide "insight" which is subjective and (as we all know) not likely to be representative of the universal autistic experience.

What does make sense is for scientists to study the "autistic experience" across a wider spectrum of individuals.

ASPartOfMe
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17 Jun 2017, 1:50 am

The media has been all abuzz about the use of Artificial Intellegence for very early detection based on a small study. The following WIRED article differs from most in that it is detailed and realistic about the difficulties for this knowledge to be actionable.

AI COULD TARGET AUTISM BEFORE IT EVEN EMERGES—BUT IT'S NO CURE-ALL

But this is a thread about the need for autistic involvement in Autism research

Quote:

And if you can predict symptoms, you can get a lot closer to identifying targeted disease pathways—and targeted preventive treatments, either behavioral or pharmaceutical.

Bolding mine.

Jules Attwood @ Bath Uni
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12 Jul 2017, 6:25 pm

I completely agree with this thread. I am a researcher study social anxiety and autism. Whilst I think that a strength of not having autism myself means that I can maintain a genuine curiosity of the experience because I have no idea what it's like to have both, it's 100% vital to include people with autism so that I don't completely miss the mark! I also agree that trying to generalise small samples to everyone is nonsense, unfortunately though that's what research has to do pragmatically and it means that we have to be savvy when reading and interpreting papers. Unfortunately the media doesn't do this and just goes for headlines which means lots of non-information get taken as gospel!

cyberdad
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12 Jul 2017, 8:13 pm

Jules Attwood @ Bath Uni wrote:

I am a researcher study social anxiety and autism.

I trust you are more diligent with your editing skills when publishing Jules?

Jules Attwood @ Bath Uni
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14 Jul 2017, 12:40 am

Yes I always print out and read actually as I've always been terrible for typos!

cyberdad
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14 Jul 2017, 1:21 am

LOL! :lol:

will@rd
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14 Jul 2017, 1:58 am

IstominFan wrote:

I just read that the life expectancy for people with ASD is 54 years? I'm 52 now. That's sad.

I'm 58 now and feeling like 54 might have been about right.

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