Hello Teammates, colleagues, and friends,
As always my discussion on autism is from a self-advocates perspective. It is just an alternative way to look at some issues in the world of autism. I am not an expert, nor do I claim any way of thinking about this topic is correct or that any are wrong. What I hope I continue to do on a monthly basis is offer a different perspective than perhaps one gets on the professional side. You can choose to take from it what you find beneficial, or grumble about it if you prefer.
This month’s discussion is going to focus on 2 things
- Tone It Down Taupe/ #redinstead
- Neurotribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman with forward by Oliver Sacks
April is typically when everyone is focused on Autism Awareness. It is when you see a profusion of puzzle pieces and “Light It Up Blue” posts everywhere. This is an awesome time for teachers, professionals, and industries to call attention to the controversial topic of autism.
However, for Autistic Self Advocates, Autism Awareness is not quite as awesome. These individuals see continued publicity for Autism Speaks, a fund raising and “education” organization that continues to be resistant to the input of autistic adults, who are arguably in the best position to decide what kind of research would benefit autistic people and their families as a bit of a travesty. These individuals would like to see less focus on finding the root causes and possible cures for autism, and more focus on how to improve the life of autistic children, their families, and the adults they become. To these individuals the blue stands for the misconception that this is a disorder that disproportionately affects boys, when in reality the disorder affects women and minorities at the same rates as boys of a certain paler hue. To these individuals the puzzle piece indicates that they are somehow incomplete or that there is some part of them that is missing, or that they are too puzzling to comprehend; when they don’t feel that way.
So instead of lighting it up, they tone it down. “Taupe is similar to beige. It’s a non-obtrusive color to symbolize the toned down sensory and emotional experiences of those lacking autism” ~ Active Minds executive board. It is a common lament among Self advocates that Autism Awareness does little to increase Autism Acceptance; but rather tends to highlight the horrors of the ‘disease”.
There is also a move on Twitter to Choose Red Instead #redinstead, as self-advocates want to focus on the positives and how to help people become more independent, to support organizations with autistic adults on the board and do not treat autism like a burden or disease. For most self-advocates Autism is not actually baffling. We just need to think more intelligently about people who think differently. Just because a computer isn’t running Windows doesn’t mean it’s broken, it might just be running Lennox, or the latest iOS.
NeuroTribes is a book written by Steve Silberman, (Click link for more information or to see where available) an award winning science journalist. It’s quite thick, but it reads more like a novel than a scientific article. Don’t think that this makes it any less valid as a source though, just because it was enjoyable didn’t invalidate it’s truth. This book is properly cited and has a large and remarkable source list. This book unpacks the differences between Leo Kanner and Hans Ausberger ( I learned way more about Nazi Germany than expected for a book on Autism!), and the pros and cons of each. Including how they both had some good ideas but ultimately also got it kind of wrong. It delves into the history of parents who fought for education for their children over institutionalism. It covers the beginning of the supplement industry, the immunization controversy, the diet cure claims. It touches on some of the now disproved (but somehow not disbelieved) causes of Autism (poor parenting, environmental impacts, immunization, diet deficiencies, etc.) It delves into the studies of Victor Lotter and Lorna Wing with the MRC in London and how they expanded the diagnostic criteria and clarified the disorder in order to help families in need get the services that would help them, and the resulting “Terrifying New Epidemic” of autism that followed that broadening. It details the creation of the DSM I through V and discusses how individuals with autism were included in the study group that developed the section on autism in the DSMV, a first. It covers the creation of behaviorism and ABA, which though hailed as a gold standard by professionals is seen as still abhorrent to self-advocates, in such a way that you can perhaps see why they dislike it so. Most importantly though this book explores neurodiversity and Inclusinionism, and the possibility of a better future for those who are wired differently. “Imagine if we had put off the issue of civil rights until the genetics of race were sorted out, or denied wheel chair users access to public buildings insisting that with the assistance of science, everyone will someday be able to walk?” ~Silberman
The book can be found at most libraries, on Amazon, and it is available on Nook, and Audible and many other digital formats. If you want a comprehensive knowledge of Autism, this would be a great place to begin. If you think you already have a comprehensive knowledge of autism, I would suggest you check to make sure you know what you know. I learned a lot and come at this from a personal, familial, and professional background and I learned a great deal from this experience. I now have a list of other sources I want to explore.