Yesterday, I did not “light it up blue” for autism awareness. Instead, I intend to “Tone it down Taupe” and “Walk in Red”.
This may come as a surprise to some, but I had my reasons. The problem is, the slogan has been captured by Autism Speaks, an organisation that, despite its name, does not speak for autistics. Instead, it ignores, undermines and degrades us with its actions.
The biggest problem with Autism Speaks is its consistent use of the “Autism is a tragedy” narrative, to the point that John Elder Robison resigned from the Autism Speaks Board. Autism Speaks refuses to listen to those autistics who say that we have #ALifeWorthLiving
A second problem is that only a fraction of the money donated to Autism Speaks is used to help autistics and their families.
A third problem is that Autism Speaks initially bought into the MMR Autism causation hypothesis, and still refuses to distance itself from its earlier position. At the start of 2009, Alison Tepper Singer was the Vice President for PR and Strategy at Autism Speaks when the first three cases in the Omnibus Autism proceedings were judged. When the verdicts went against the families, Singer took a much closer look at the evidence and realised just how poor it was. But when she tried to get Autism Speaks to change its approach, she failed. She then left Autism Speaks and set up the Autism Science Foundation.
Recently Rob Ring, Autism Speaks’ Chief Science Officer, put out a statement unequivocally denying the vaccine autism link. But then Bob Wright, cofounder of Autism Speaks, commented.
Over the last two decades extensive research has asked whether there is any link between childhood vaccines and autism. Scientific research has not directly connected autism to vaccines. Vaccines are very important. Parents must make the decision whether to vaccinate their children. Efforts must be continually made to educate parents about vaccine safety. If parents decide not to vaccinate they must be aware of the consequences in their community and their local schools.
The comment is ambiguous and equivocal. Wright should have confirmed that autism and vaccines aren’t linked. Instead, he suggests there may still be something to it.
With Autism Speaks, the bad it does far outweighs the good.