April is Autism Awareness Month, as everyone has likely been steadfastly reminded recently by the nonprofit organization Autism Speaks, the largest autism advocacy group in the United States. The ads are out to make Build-A-Bears to support Autism Speaks, buy puzzle-shaped jewelry to support the organization, start signing up for walks to support them.
It is estimated nearly 1 in 88 children are now diagnosed with autism, so there aren’t many people who don’t know someone affected with the disorder. So it makes sense to donate to such a large organization that does such great things to help save millions of children, right?
Not according to the majority of local advocates, families and young adults who deal with the disorder every day.
Autism Speaks raised more than $55 million dollars in donations in 2012, but many families say they don’t see any needed results from those donations. According to several parents, they have called Autism Speaks offices in the past looking for assistance with things they needed every day, such as therapy, support groups, community resources, and just plain old help. All were told the organization did not offer such things, and they could just direct families to a few places that may help them. As one parent said “my problem with Autism Speaks is they don’t seem to listen to what families dealing with autism really want. Help with schools, provide advocates, help with insurance, where to go for therapy. I’m fine with research, but they ignore what families really need to get through the day. If they really want to help, their platform really needs to change.”
Several advocates in the community share those concerns. The annual “Walk for Autism Speaks” makes millions of dollars every year, but none of that money stays in the communities it was raised in to help families with autism. This has become a bone of contention as Autism Speaks is also going after fundraisers and endorsements local organizations on the ground serving families usually benefited from. In Pittsburgh, 2013 proceeds from puzzle piece cookies sales at local Panera Bread locations will benefit the Pittsburgh chapter of Autism Speaks, while a former recipient, the Autism Center of Pittsburgh, loses those thousands of dollars in revenue and is left struggling financially.
Ask young adults with autism who are able to talk about how they feel, and the venom begins to fly. Several feel Autism Speaks makes their disability out to be a disease that needs to be eradicated, while they feel it is a part of their identity that makes them the special individuals they have grown up to be. Several point to a video titled “Autism Every Day,” in which former executive Alison Tepper Singer described how she contemplated a murder-suicide in finding out her own daughter had autism. They also have a problem in how highly paid top executives at Autism Speaks are, several of whom make well over $100,000 per year. And not one national executive is or ever has been a person who actually had autism. They feel those funds would be better directed at helping them and younger children navigate the world rather than telling the world they are “broken” or need “cured.”
While Autism Speaks has been a front-runner in getting the word out about awareness, raising millions of dollars for research, and helping with grants for camps, iPads, and other items, many families feel while they “speak,” that they are not listening to them.
There are ways those who still want to donate during Autism Awareness Month can help. Several local charities who provide diagnostics, evaluations, social groups, parent support, even service dogs, run entirely on donations and could really use the help to find them and donate click on the links below.
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