February 27, 2015

AutismSpeaksThis week Autism Speaks celebrated their ten year anniversary by encouraging their followers on Twitter and Facebook to share “how autism has touched your life” using the hashtag #AutismSpeaks10. While some individuals took the time to congratulate the group, others were less complementary.

Ari Ne-eman, President of the Autistic Self-Advocacy Network, told Buzz Feed News.

“It really came out of the autistic Twittersphere, which saw this as an opportunity to highlight the fact that Autism Speaks’ 10 years of existence have, in fact, made things worse for us, not better,”

Some groups believe that autism is not a disability in the medical sense, but rather, a different way of being, and that it is not something that needs to be “cured.” They also object to the fact that Autism Speaks does not include any individuals with autism in their upper management, with many comments repeating ASAN’s slogan “Nothing about us without us.” Author John Elder Robison was on the board of directors for the organization, but chose to leave citing a Public ServiceAnnouncement (PSA) entitled “I Am Autism” released 2009, which many individuals with autism find offensive.

You can watch the PSA here https://www.youtube.com/watch?v=8mycxSJ3-_Q.

Many also object to the way Autism Speaks allocates funds for research. They argue that money going towards genetic research and studies seeking a cure could be better spent developing tools and therapies to help individuals who are living with autism. ASAN acknowledges that most individuals with autism live with challenges, and they agree that a certain level of support is necessary. They object to any approach that is aimed at making an individual “less autistic,” claiming that autism is a central part of their identity.

You can read the ASAN mission statement here http://autisticadvocacy.org/about-asan/.

Autism Speaks is arguably one of the most influential organizations in the Autism Community, with nearly $50 million in donations in 2013. Of this, $15.3 million is spent on scientific research, while only $4.6 million goes towards “family grants” aimed at helping families and individuals living with autism.

Comments on Autism Speaks’ Twitter page ran the gamut from congratulations to accusations. One commenter, Shannon Rosa ‏@shannonrosa wrote:

“One way AS could actually help #autistic people: divert those research $ to communication & supports, not cures/causation. #AutismSpeaks10”

Shannon RosaAnother,  David K. said:

“Thanks, #AutismSpeaks10, for making yourselves filthy-rich by preying on vulnerable parents & wrecking the futures of vulnerable children.”

Not all of the tweets were critical, however. Amy Gravino, an autistic adult who is on the Communications Committee at Autism Speaks, wrote

“#BLOG: How Autism Speaks Helped Raise My Voice >> http://shar.es/1WJcpv #autismspeaks10 @AmyGravino”

And Kerry Magro, an autism advocate and autistic speaker, wrote:

“A Letter to the Organization That Took a Chance on Me >> http://themighty.com/?p=11316 #BeyondThankful #AutismSpeaks10”


About the author 

Laurel Joss

Laurel Joss is a freelance writer with a Master’s Degree in Early Childhood Education. She worked as an RDI® Program Certified Consultant and has published articles in Autism Spectrum Quarterly and on her blog www.remediatingautism.blogspot.com. She is a mother to two children, one of whom is on the autism spectrum. You can also follow her on https://twitter.com/speaking_autism and https://www.facebook.com/speaking.autism.ca

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