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It’s Time For Autism Research To Do Better By Autistic People

Photo: Charlene Croft | Creative Commons / Flickr [image: hand of a person with light skin arranging long red, green, and yellow construction blocks in a line.] Shannon Des Roches Rosa @shannonrosa Autism research is mostly failing my teenage son and his autistic community. Saying something so forthright may seem harsh, but this is the Greta Thunberg era—and we’re now telling people what they need to hear, not what they want to hear. I’ve been going to autism science conferences and scrutinizing autism research for nearly a decade, and during this time most autism studies have remained mired in areas like causation—a pursuit that does absolutely nothing to improve the lives of autistic people who are here already. Even more frustratingly, when research does address the needs of existing autistic people it does so with the goal of “intervention,” rather than focusing on quality of life, and largely neglects those…

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You Are Not Your Child

Sara Luterman www.NosMag.org Sara Luterman [image: Headshot of a smiling white person with short dark hair & glasses.] Recently, Amy Lutz, a parent advocate, wrote an opinion piece for Spectrum News titled, Adults with disabilities deserve the right to choose where to live. I wholehearted agree with that sentiment. Unfortunately, the article that follows argues nothing of the kind. It is, in fact, an argument to return people with developmental and intellectual disabilities to institutions. These new institutions have organic-biodynamic farms, swimming pools, and fluffy pillows. They are, however, still secluded and subject to all of the abuses of Willowbrook and Pennhurst. Amy Lutz and others who mask new institutions as a “choice” do not draw a healthy or appropriate distinction between themselves and their own children. When they say, “adults with disabilities deserve the right to choose,” they mean is that their opinions are their children’s opinions. They do not…

Building the Plane as We’re Flying It

TPGA is observing Autism Acceptance Month by featuring accounts from autistic people about the differences accommodations (or lack thereof) make in their lives. Today’s story is from Sara Luterman, about the “frequent adjustments” that are necessary for her to be properly accommodated at her workplace. Sara Luterman www.nosmag.org The statistics around autism and employment can be incredibly discouraging. Forty-two percent of autistic people in their twenties — people like me — are unemployed, even though only 26% of overall young disabled people are out of work. This might seem counter-intuitive. After all, if someone can do well in college or even graduate school, surely they should be able to do well once they join the workforce? Unfortunately, it doesn’t work that way. Like many of my autistic peers, I have struggled to keep a job. I was fired from the first full-time job I ever had after just two weeks:…