There's also the idea that they have absolutely no people with autism on their board, and within their ranks up until quite recently. So you have all these people who are not autistic attempting to aid autistic families with no input from individuals or groups with autism. They still refer to autism as a disease. They are less open about what they actually advise. But I believe they recommend 'early intervention' before children are two years old.
At one time they hired John Elder Robinson, a well known writer who is autistic. Who quit because they would not listen to his advice in helping people with autism. This is what he said at the time:
"Autism Speaks founder was a media executive; their name a marketer’s creation. Many of the staff described themselves as non-profit professionals, and none of the senior people were autistic. They were very effective at fundraising, and painting a picture of autism that elicited widespread sympathy.
Autism-as-tragedy helped them raise hundreds of millions of dollars. Groups like Charity Watch reported that they spent lavishly on themselves and their organization compared to other medical nonprofits. Their annual reports told a sad story. Monies raised locally paid headquarter’s salaries and supported distant researchers. Very little returned to the communities who raised the funds. Perhaps it’s all about the money, I thought, and my ideas of acceptance and fitting in are not a basis for tens of millions in donations the way “stolen children” and “ruined families” are.
I had imagined I was making a difference on their science board, but the Wrights called the shots when it came to investing the organization’s money, and the research I had advocated for took a back seat to the Wright’s agenda, which appeared to be biology and cure. Had I been able, I would have made different choices.
Autism Speaks would probably disagree with me, but I felt then and feel today that their focus on causes and cures did very little to help the millions living with the reality of autism. From the beginning of my autism advocacy, I have kept that goal in sharp focus and I’m quickly frustrated when others can’t do the same."
...I joined the Autism Speaks science board in the hope I could help move their science in a direction that would be more beneficial to autistic people. At the time I thought their legacy would be good autism science. I left the Autism Speaks science board because of their hurtful depictions of autism and autistic people. Autism Speaks did not make a huge mark in science, and with drops in funding their significance in that world has diminished. It’s toxic rhetoric that has become the organization’s legacy.
Meanwhile we autistic people are still here. We’re not missing, and we’re not lost. Monsters will not take us, because we are strong. When it comes to policy, parents and clinicians certainly have a say, and deserve a seat at the table, but the table rightly belongs to us. We are autistic people."
My Time with Autism Speaks