Autism Speaks Inc. is the biggest group in the US that works to support and study autism. Bob and Suzanne Wright started Autism Speaks in 2005 after their grandson was identified with autism.
The group got its start with a $25 million donation from Bernard Marcus who helped to create Home Depot and would go on to serve on its Board of Directors. After merging with three other autism groups, Autism Speaks grew very quickly.
The group is very big and well-known and it gets a lot of attention and donations. It has been behind a lot of public awareness campaigns and its founders pushed for World Autism Awareness Day to be recognized by the UN.
It says it helps people with autism by offering tools, services, interventions and cutting-edge research. However, Autism Speaks has gotten a lot of bad press, especially from people with autism who tell others not to support the group. In this post, you will read why Autism Speaks is such a controversial organization.
Why is Autism Speaks in Controversy?
A group called Autism Speaks is controversial because they say they want autistic people to reach their full potential. Autism Speaks’ website says that it speaks for the autism community by raising awareness around the world and speeding up a range of options.
This makes many people on the autism spectrum see the organization as a threat to the autism community. A lot of people who are affected by autism don’t agree with how Autism Speaks thinks and works as a group.
Basically, the vast majority of the people on its board of directors are neurotypical. People with autism have been protesting Autism Speaks since the beginning. In 2009, the group put out a shockingly offensive ad called “I am Autism” which made autism look like a monster or demon that kids have to deal with every day.
This made their protests even more justified. You can read about other controversies related to this organization below:
Concerns About Representation
One of the main complaints about Autism Speaks is that it doesn’t have enough autistic people in leadership and decision-making positions. Some people disagree with the idea that a group that says it speaks for people with autism should have a lot of people from that community in important roles.
Allocation of Money
Some people are curious about how Autism Speaks spends its money. Autism Speaks doesn’t spend nearly as much of its money as it should on actually helping people with autism and their families and giving them tools.
Only a small part of their yearly spending goes to Family Services and family grants. At the same time, they were raising money with a huge 20% of their budget. It doesn’t make sense that 20% of your budget is spent on fundraising and only 1% is spent on real charity activities and funding.
At the same time, a big chunk of their money goes to study. In its early years, the group worked to find a fix for autism. Now, a lot of their research is going into making prenatal tests better so that autism can be found in the womb and the pregnancy can be ended as well as improving their controversial Applied Behavior Analysis (ABA) therapy.
Not much of their study is done to help people with autism or make their lives better. It has also been found that Autism Speaks pays its top leaders more than $600,000 a year. There is no set amount that a nonprofit CEO should make, but most people think that a salary of $600,000 or more a year is too high.
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Relationship with the Autistic Community
Many people in the autism community are worried that Autism Speaks isn’t looking out for their best interests or listening to them. Some people think that the group has spread harmful assumptions and hasn’t done enough to help people accept and understand neurodiversity.
Evolution and Response
Because of these complaints, Autism Speaks has worked to change its message and way of doing things over the years. It is no longer about the “cure”; instead, the group is focusing more on learning and acceptance. They have also tried to include more autistic people in their programs and projects.
The organization has done some things to address some of the criticisms, but the problems it has been in have shown how important it is to include everyone and how important it is for organizations to keep reviewing and changing their methods based on what people in the communities they serve say.
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