By Debra Muzikar
“The only thing that is constant is change,” a wise man once said. 2015 was a year of intense change. From the book Neurotribes, the Legacy of Autism and the Future of Neurodiversity, to the shake-up at Autism Speaks, 2015 has been a wild ride for those in the autism community. It appears 2015 may be a breakthrough year paving the way for the acceptance of neuro-minorities in future generations. As 2015 comes to a close, I’d like to highlight some noteworthy happenings from the past year.
1) While there have been other books written on the history of autism, Steve Silberman’s NeuroTribes documents in an entertaining, informative style the history of autism , the spearheading of the neurodiversity movement by the autistic population, while refuting the concept of an “autism epidemic.” Because of the critical acclaim of this book (it debuted on the New York Times bestseller list and has been picked as a top Human Right’s book), many mainstream readers, have a heightened awareness of the challenges facing the autistic population over the last century and an understanding of the concept of neurodiversitty. The Art of Autism published a book review of NeuroTribes here.
2) Many autistic people marry and have families. This year a wedding hyped as “the first all Autism Wedding,” the union between Anita Lesko and Abraham Neilsen, made national news. What made this wedding different was it was officiated by Stephen Mark Shore (on the spectrum) and all the members of the wedding party were also autistic. The wedding was so well-covered by the press that it even made People Magazine! The Art of Autism had an art exhibit at this wedding and published an article about it here.
3) Big changes happened late this year at Autism Speaks. Bob Wright relinquished his hold as Chairman of the Board. Suzanne Wright, who has more than once offended the autistic community, has also stepped back after a diagnosis of cancer. The President of the Board, Liz Feld, also announced her future resignation and Robert Ring, Chief Science Office for Autism Speaks also announced his resignation. In addition, two autistic people, Dr. Stephen Shore and Dr. Valerie Paradiz were appointed to the board, making them the first autistic people to serve on the board of Autism Speaks. The Art of Autism published an interview with Stephen Shore about the changes and his vision for the future of Autism Speaks. Autism Speaks is the biggest nonprofit for autism in the world. Intense pressure on Autism Speaks by the autistic community has hastened changes within the organization.
4) The word “neurodiversity” was added to dictionary.com. The definition reads “the variation and differences in neurological structure and function that exist among human beings, especially when viewed as being normal and natural rather than pathological.”
5) Neurodiversity panels and conferences became mainstream in 2015. A realization among employers that people who think differently have something valuable to offer became a rallying point for those in the movement. From the Neurodiversity in the High Tech Work Force Conference in Silicon Valley to the Neurodiveristy panel at the USC Institute of Genetic Medicine the idea that neurodiversity is an important part of the evolution of humanity became more mainstream.
6) The power of organized events through social media to elicit change was apparent with flashblogs and hashtag wars. Notable hashtag wars occurred in response to Autism Speaks hashtags. For example, when Autism Speaks created the #MSSNG hashtag, which depicted a campaign to support the development of a database of sequenced genomic information on people with autism spectrum disorder (ASD) and their family members, the response was for #ActuallyAutistic people to respond with #NotMSSNG hashtags. A recent blog on the Mighty by a parent depicting a meltdown of an autistic child, resulted in a #CrippingTheMighty hashtag flurry on twitter and led to the removal of the offending post and an apology by the Mighty. Intense pressure through social media in the form of boycotts, social media posts, and email writing campaigns has led to social change.
7) “Nothing about us without us,” is a slogan within the autism community which is used to communicate the idea that no policy or decision should be made without representation from the autistic people. The Art of Autism is founded by myself and Keri Bowers (two parents). We are committed to including autistic people in our decision-making policies. Last week we asked three of our regular autistic writers, Christina MacNeal, Leanne Libas, and Jocelyn Eastman to become part of the Art of Autism advisory board with the hope that they can bring the autistic perspective to the management of our organization. The Art of Autism has always had autistic people on our advisory board. The reason we are adding these three individuals is they are young and have written thoughtful, intelligent, and relevant blogs in the last year for the Art of Autism. We are excited they have agreed to be part of our organization.
8) Autistic mothers spoke before the United Nations on their discrimination as mothers and on stigmatization. And an autistic women’s network worked with Cambridge University on the first world research into autistic women as mothers. (thank you Monique Blakemore for a link to your blog about the United Nations event.)
9) Notable Deaths
In 2015, Oliver Sacks, the neurologist and author of many books which explored human neurology, succumbed to cancer. Also, Iain Croft, the founder of Autism World Magazine, passed this December.
In 2015, The Art of Autism had a breakthrough year as well with three major projects:
1) What is it like to be autistic in the year 2015? The Art of Autism curated the Autism Unveiled project – blogs from 90 autistic people in six weeks.
2) The 2016 Art of Autism Calendar – The Art of Autism partnered with artist Grant Manier to create a beautiful calendar which includes important dates such as “Autistic Pride Day.”
3) The Dear Me Project which is ongoing – letters from parents, autistic people, and others to their younger or older selves.
So what is the future for the Art of Autism?
Equality is about respecting ourselves as well as others. The Art of Autism looks forward to continuation of respectful dialogues in the future on important topics that effect the autism community. We’ve been blessed over the years with beautiful art, insightful poetry and prose, and informative and topical blogs by autistic people and others. We hope to continue this tradition in 2016.
Autism presents differently in females than males resulting in many females receiving late diagnoses or no diagnosis at all. The year 2015 resulted in many blogs written by females on the spectrum. I predict in the future the male:female ratio of autistics will diminish as we continue to expand our understanding of autism.
Collaboration among like-minded organizations is an essential element to maximize effectiveness for social change. The Art of Autism continues to partner with organizations throughout the world in order to change perceptions about autism.
The Art of Autism is an interactive experience. We hope readers, bloggers and artists will continue to contribute to our blogs, exhibits, and events to raise consciousness about the autistic experience and create a kinder more accepting world in 2016.
Edited: 12/26/15 – Sorry for an inaccuracy that has been corrected.
Wonderful! Thank you for this and for all you do.
I have a 50 year old son with autism so have been at it for a long time. I found the “Neurotribes” book fascinating. The history of invasive and demeaning treatments was alarming. Far more practical help needs to be done not only in education but also much more intensive social help is needed for many with Aspergers who want social interaction but are clueless. I was always told it didn’t exist or it is not our job. Just sticking a student in a regular classroom does not automatically make one normal or guarantee other students will socially interact with the ASD Student. Now adults are not getting the help they need to be successful. It is sad when one is a brilliant scientist or whatever but who can’t care for himself. I say provide the support he needs and use his talents a brilliant scientist or whatever. Far more needs to be done to get those with autism employed.
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