Death with Dignity
Want to know about autism? Ask someone autistic!
This is a crucial moment for the autism branch of the civil rights movement. We have more visibility and momentum right now than we have ever had before.
In the last couple of weeks, there have been a remarkable number of essential publications. We can make a difference in how autistic people are perceived in the media by supporting them.
Please take as much time as you can in the next few days and read as much of the material in this post as possible. I've decided to put them together because I want to emphasize their collective importance. Try to visit each of these links. Like, share, comment. Let people know that this is the sort of coverage of autism you want to see. Let these stories change the way you think about us.
We are at a moment when the narrative that the mainstream press tells about people with autism can change in a huge way. I know that because USA Today picked up a story from the Indianapolis Star about adults with autism that included Ari Ne'eman, the president of the Autistic Self-Advocacy Network.
In the story, Shari Rudavsky explores the growing movement to view autism as a condition that can have advantages as well as disadvantages, and the desire of autistic people to play a greater role in policy that concerns us:
Giving those who have autism a voice in the debate is critical, said Ari Ne'eman, the group's president and a founder. Discussing treatment and research priorities without listening to those with autism would be like allowing men to run the women's rights movement, he said.
"Frankly the national conversation in this country has been dominated by parents and professionals," Ne'eman said. "They have a valuable voice, but it's not the only voice out there."
Less than 1 percent of research funds go to support services for the needs of adults with autism, he said.
She references Laurence Mottron's remarkable commentary for Nature, which is clearly a game-changer in terms of how the press is thinking about autistic people. Nature is now allowing free access to the article, and you must read the entire thing.
Too often, employers don't realize what autistics are capable of, and assign them repetitive, almost menial tasks. But I believe that most are willing and capable of making sophisticated contributions to society, if they have the right environment. Sometimes the hardest part is finding the right job — but organizations are now arising to address this problem. For example, Aspiritech, a non-profit organization based in Highland Park, Illinois, places people who have autism (mainly Asperger's syndrome) in jobs testing software (http://www.aspiritech.org). The Danish company Specialisterne has helped more than 170 autistics obtain jobs since 2004. Its parent company, the Specialist People Foundation, aims to connect one million autistic people with meaningful work (http://www.specialistpeople.com).
Many autistics, I believe, are suited for academic science. From a young age, they may be interested in information and structures, such as numbers, letters, mechanisms and geometrical patterns — the basis of scientific thinking9. Their intense focus can lead them to become self-taught experts in scientific topics. Dawson, for example, does not have a scientific degree, but she has learned and produced enough in a few years of reading neuroscience papers to conduct certain types of research. At this point, she deserves a PhD.
In addition to his comments in Rudavsky's article and the piece he wrote for Austistics Speaking Day on autism and Community, Ari also discussed his opposition to "Death with Dignity" laws on Dr. Oz's website:
How can choosing to die ever be a truly voluntary choice in a society that fails to provide life with dignity for disabled Americans?
If the only alternative to death offered to those who require assistance is poverty and segregation, we are not providing people with meaningful choices. Seniors and disabled Americans who require assistance in activities of daily living must often spend their assets and limit their income in order to qualify for the Medicaid coverage which will pay for their long-term services and support needs. Once they qualify, this enforced poverty is compounded by rules that make it difficult, if not impossible, to get services in the community, forcing hundreds of thousands into nursing homes and institutions, where loss of autonomy is a given. This, not illness, is why people make the choice to die.
But the most significant publication that Ari has been involved with lately is ASAN's Navigating College project. This handbook for college students, which can be ordered for purchase here or downloaded for free here, is essential reading for all autistic students in high school and college, as well as their parents. Adults who are long past college age will also find much to enjoy and think about here. I cannot recommend it highly enough.
ASAN's 5 Year Anniversary Celebration is November 16. Kathryn Bjornstadt and Corina Becker will be honored for their creation of Autistics Speaking Day. Please support their efforts as well by continuing to read as many of this year's submissions as possible. And please support the individual writers as well, by continuing to visit the ones you learn from.
I continue to learn, and laugh by visiting OWL.
One final remarkable piece of writing that I want to make sure you are aware of. It comes from thAutcast friend Beth Arky and is an examination of sensory processing issues for parents:
Children, teens and adults with SPD experience either over-sensitivity (hypersensitivity) or under-sensitivity (hyposensitivity) to an impairing or overwhelming degree. The theory behind SPD is based on the work of occupational therapist Dr. A. Jean Ayres. In the 1970s, Dr. Ayres introduced the idea that certain people's brains can't do what most people take for granted: process all the information coming in through seven—not the traditional five—senses to provide a clear picture of what's happening both internally and externally.
Along with touch, hearing, taste, smell and sight, Dr. Ayres added the "internal" senses of body awareness (proprioception) and movement (vestibular). When the brain can't synthesize all this information coming in simultaneously, "It's like a traffic jam in your head," Peske says, "with conflicting signals quickly coming from all directions, so that you don't know how to make sense of it all."
So--- I'm off for the day.
You've got reading to do.