Let me just start by saying. I am not here to change anyone’s beliefs. I am only representing some viewpoints that I consider worthy to look at.
As someone who identifies as neurodiverse, and who communicates with Individuals with autism and parents of children with autism, I have some reservations about the leading resource for autism support offered to new parents – Autism Speaks; and their current therapy of choice – ABA. These hesitations are not like the anti-vax movement in which individuals ignore scientific data, but rather a respectful movement of adults with autism asking that their research, or topics that they would like to see researched be considered alongside research being done about them by neurotypical individuals. Adults with autism are only asking that they be involved in the decisions that affect their lives. As a Speech Language Pathologist my job is to help people find their voice, as an adult autistic individual it is my job to advocate for my own needs.
For many people, Autism Speaks is the Gold Standard resource and the most frequently shared with individuals or the parents of children who are receiving a diagnosis and need guidance on what that means to them moving forward. Autism Speaks raises money to support research in the field of Autism, and helps shape legislation that affects the schooling, medical rights, and treatment options of individuals with autism. However, in the autistic adult advocacy groups Autism Speaks is actually not considered a beneficial resource. There are several articles that can be found outlining why Autistic Adults do not prefer Autism Speaks. In this article 7 Reasons To Not Support Autism Speaks some of these concerns are addressed. Though the title states 7 reasons only 6 are given. These in summary are that 1. Autistic individuals do not like the resource, and should the people that should be receiving benefits from a non-profit not feel that they are receiving said benefits? 2. That this resource caters to the parents of the individuals and not the individuals themselves, this is not to say that helping families is not of great importance, only to say that the children and their actual needs are not being considered. 3. Autism Speaks does not allocate it’s funds to directly help autistic people. Their funds go to employee compensation with many employees making over 6 figures, and the bulk of their funds going towards research. That should be good; however, much of their research is focused on causes of autism and cures for autism rather than ways to help individuals which can be problematic. 4. Autism Speaks seeks a cure for autism.At first, it might seem appropriate to find a cure; but, this perspective is ultimately rooted in ableism and does not embrace the entirety of the experience of autism. It also suggests that the experience of autism is inherently bad, which many autistic individuals find to not be the case. 5. Autism Speaks does not keep autistic individuals on staff. They do not talk to autistic adults, and they often discount the autistic adults who have tried to speak to them.Every advocacy organization’s purpose is to serve the population it represents and ensure that this main goal is, in fact, executed. 6. There are other resources that you can turn to that balance the needs of autistic individuals and their families, that are researching for effective methods to help autistic individuals and non autistic individuals connect.
In the article Why I am Against Autism Speaks (and you should be, too), the author lays out some very succinct points:
- Autism Speaks does not have a single autistic member on their board.
- Autism Speaks only spends 4% of their budget on “family services”.
- Much of Autism Speaks’ money goes toward research, and much of that research centers on finding a way to eliminate autism, and thus, autistics (which will likely be done through a prenatal test, in the same way that the Down’s Syndrome test is conducted).
- Autism Speaks produces advertisements, small films, etc. about what a burden autistic people are to society.
Autism Speaks was responsible for “Autism Every Day”, which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter. This has now be removed from Autism Speaks’ Youtube channel.Autism Speaks is responsible for the atrocity known as “I am Autism”, a short film produced by the same person who directed the 3rd Harry Potter movie (yes, really) and features an ominous voice saying things like “I am autism…I know where you live…I work faster than pediatric AIDS, cancer, and diabetes combined…I will make sure your marriage fails.”
Again, I am not trying to change your beliefs. This first post is just to explain why you will not be seeing Autism Speaks on my blog about Neurodiversity. Perhaps Autism Speaks; but, Neurodiversity Connects.
Please do feel free to visit the resources page of this blog to find an ever growing, changing list of resources that are more accepted by Autistic adults and families. I would suggest ASAN (Autism Self Advocacy Network) as a fantastic first resource. If as an individual you find any broken links or resources that you do not consider appropriate please send me a message detailing the issues and I will consider your perspective.