March 2, 2015

Last week, MTV News ran a story about how many autistic people were speaking out in protest against Autism Speaks‘ stated intent to find a cure for autism. But shortly after going online, it was quietly removed.

Freelance writer Robin Lempel wrote the article for MTV News, which we were able to get a copy of after it was removed from their site. The piece started out talking a little about Autism Speaks and its stated mission, quoted from their own web site. It followed up with tweets of support for Autism Speaks in celebration of their ten year anniversary, under the hashtag #AutismSpeaks10.

But then Lempel shared many more tweets that added the hashtag #ActuallyAutistic that were, to put it mildly, hostile to Autism Speaks and its activities. She established that Autism Speaks was looking for a cure, but that opponents largely expressed strong disinterest in a cure.

Lempel also made the point of noting that Autism Speaks does not have any actually autistic people in leadership roles, a point long made by Boycott Autism Speaks.

The article then introduces Amy Sequenzia from Boycott Autism Speaks and ASAN, and shared some select quotes from Sequenzia.

The initial comments on the original article were thanking MTV for honoring the voice of the autism self-advocacy community. Social media also appeared to be positive about the article for the brief time that it was online.

But let’s get back to those select quotes from Amy Sequenzia. According to a blog later authored by Sequenzia offering her first-person perspective, therein lies the rub: MTV had reportedly agreed to sharing a verbatim, unabridged statement from Sequenzia. But the final published article, according to Sequenzia, was incomplete.

Sequenzia attached a series of private messages to her account that show MTV agreeing to posting her full comment, unabridged. The conversation later turns sour when Sequenzia notes that MTV has not honored their agreement, which ultimately resulted in MTV pulling the article down entirely rather than fixing it.

MTV’s explanation for their change in heart, through issue editor Caitlin Abber, explained that they no longer felt the piece was sufficiently balanced because Autism Speaks never responded to an invitation to have their point of view heard.

I reached out to both Sequenzia and Lempel. Amy Sequenzia gave us a brief response to look for her own written account of the events (which she did later post, as-promised), but did not agree to answering any questions from us. Robin Lempel has not yet responded to our request for her point of view. Out of respect for Sequenzia’s desire to not be quoted out of context, we’ll refer you to her previously linked account to get her side of the story.

Twitter fires still burn with the disappointment and anger of autistic people who want to know why MTV pulled the article. And there is the lingering question: if Autism Speaks has a strategy of refusing to publicly answer to criticism, is it fair to disregard the voices of its critics who are eager to be heard?

Disclosure: I am autistic, and I have actively protested on social media against the practices of Autism Speaks.

About the author 

Magnus Hedemark

Magnus has been in the IT industry for over 20 years, and a technology enthusiast for most of his life. He’s a verbal autistic professional, father, and husband. In his spare time, Magnus enjoys photography and riding motorcycles.

  • Like many large organizations Autism Speaks struggles with the issue of what its mission is. So it conducts many different activities and funds a wide variety of research. So it is unlikely that any given person with a connection to autism will support all of its activities.
    However, any serious look at autism in the medical literature will reveal that in most cases autism is biochemical in nature and this characteristic biochemistry is not healthy. So it is reasonable and desirable to investigate ways of ameliorating this condition through biochemistry. A cure is probably unrealistic but improvement through diet, supplementation, and maybe one day targeted pharmacological therapies is realistic and future discoveries may make it more so.
    To the extent that Autism Speaks funds research that investigates the dysfunctional biochemistry that typically characterizes autism and ways to ameliorate its undesirable effects, I believe that their actions are laudable and I support them for this.

  • It is my opinion, after reading Amy’s piece over the whole saga, that Autism Speaks pulled out their lawyers and MTV capitulated. The editor pulling it by herself makes no sense. The sudden silence from MTV News backs this up.

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