Tag: disability

Sex, Lies, and Autism Research

 

How can we get tangible benefit from the millions we spend on autism science?.
Posted Nov 12, 2017

The U.S. 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. As an adult with autism, 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 their 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?
In the past I’ve written about the idea that taxpayer-funded research should be refocused on delivering benefit to autistic people. What I have not written about, is why that hasn’t happened, at the most fundamental level.
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 have 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.
Want a different and better outcome? Ask actual autistic people.

We can tell you what our problems are, in many cases very eloquently. I’m not going to re-state all our needs here. I’ll tell you this: Whenever this topic comes up at IACC (the Federal committee that produces the strategic plan for autism for the U.S. government), the priorities of autistic people seem rather different from 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 belong to 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. The children who grew up being “normalized” can talk about how it affected them, and parents and clinicians of today would be wise to listen.

Autistic voices are finally speaking in large numbers and it’s time to pay attention. No one else knows life with autism. Parents and nonautistic researchers are sometimes listening. Hard as this may be for them to hear, they are always guessing. With autistics speaking out all over the world, that’s no longer good enough.
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.
So what’s the answer to why we’ve gotten so little return on our autism research investment: No one asked the autistic people what we wanted. It’s that simple. Had we been able to articulate our challenges, with the framework of knowledge we have today, and had we been listened to, we’d be in a very different place today.
Today is gone, but tomorrow isn’t here yet, and it can be different.
(c) John Elder Robison
John Elder Robison is an autistic adult and advocate for people with neurological differences. He’s the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the U.S. Dept. of Health and Human Services and many other autism-related boards. He’s co-founder of the TCS Auto Program (a school for teens with developmental challenges), and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia, and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts.
The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick. 

 John Elder RobisonJohn Elder Robison is the author of Raising CubbyLook Me in the Eye, My Life with Asperger’s, and Be Different – adventures of a free range Aspergian.  John’s books are sold in a dozen languages in over 65 countries. 
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World’s Largest Wheelchair Painting

LOS ANGELES, Jan. 22, 2016 /– History will be in the making at Abilities Expo Los Angeles as hundreds of people with disabilities partake in the creation of the world’s largest wheelchair painting using innovative, adaptive art tools from Zot Artz Arts for All.
The annual expo, which takes place on February 5-7, 2016 at the Los Angeles Convention Center (West Hall A), will also feature an impressive line-up of exhibits, workshops, events, celebrities and activities to appeal to people of all ages with the full spectrum of disabilities—including physical, learning, developmental and sensory disabilities.
This artistic undertaking, named the Garden of PossAbilities, will begin as a 2300 square foot blank canvas on the Expo floor. Using unique rollers and stamps temporarily affixed to an individual’s wheelchair, the surface will be transformed into a masterpiece through layers of vibrant colors and patterns.
These adaptive art implements, designed by Zot Artz Owner Dwayne Szot, will allow people with disabilities to create art using their mobility device as a giant paint brush. In addition to participating in an historic event, artists will develop motor skills, social and emotional skills, concentration and self-esteem.
“The adaptive art events at Abilities Expo have always been enormously popular, so we are thrilled to offer this opportunity on such a grand, never-before-seen scale,” said Lew Shomer, co-owner of Abilities Expo. “Artists come away with a profound sense of accomplishment, which is a thrilling experience for them as well as for their caregivers to witness.”
The world’s largest wheelchair painting will unfold over the three-day Expo with up to 300 artists using 50 gallons of paint in a rainbow of glowing colors. Participation in creating the Garden of PossAbilities, as well as admission to the Expo, is free. Show hours are Friday 11 am to 5 pm, Saturday 10 am to 6 pm and Sunday 10 am to 2 pm.
“We at Zot Artz studio hope to create awareness and opportunities for individuals with disabilities while fostering creative expression,” said Szot. “Come and be a part of posterity, reaching beyond disabilities into abilities in a big, bold and beautiful way!”
For more information, visit www.abilities.com/losangeles.  

SOURCE Abilities Expo

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http://www.abilitiesexpo.com