• Brooke Simtob

Why I Don't Support Autism Speaks

When I first learned that I was autistic, I knew absolutely nothing about autism. Being the curious individual that I am, I went straight to the internet for answers. The first thing that came up when searching for autism was an organization called Autism Speaks. I had an initial weird feeling about the organization, but everything was confirmed for me by my proud autistic friends at my board school; they told me the ins and outs of why Autism Speaks was bad and why I should be against them.

Once I graduated from high school, I wanted to learn more about this heated topic so I would know what organizations to support and why. While at college last semester, I decided to learn more about Autism Speaks and why they had such a negative reputation. I did this by doing my first major research paper for a general writing course on Autism Speaks in comparison to the Autistic Self-Advocacy Network, entitled “Autism $peaks, But Not in My Language.”

After writing an 8-page research paper on this topic for my college class, I am here to break down the most important information that I found on the negative aspects of Autism Speaks. These are the top three reasons that Autism Speaks is a hurtful, negative organization that you should not be supporting.

Quick Note:

Before I start, I want to point out that Autism Speaks has begun to try changing their organization. Their mission and website wording has changed, they have added actually autistic people to the board, and the person running the organization has changed. Despite these changes, there are still many reasons why I choose to not support Autism Speaks.

1. Cure-Based Ideology

The most problematic part of Autism Speaks is their ideology. Autism Speaks was created with the goal to cure autism.

As Jess wrote about in her last post, curing autism is the opposite of what is needed to create a loving and accepting community. I hope to write more in the future about why a cure ideology is wrong; for now, the basic idea is that curing autism inherently makes autism a disease - something that is “bad” and needs to be removed from society. I believe that autism is not a disease and that it is just a difference in neurology that needs to be accepted. Learning and researching how to help people with autism is a better alternative than trying to rid the world of us.

Autism Speaks has tried to change this in their website, which is mostly shown in the wording of their mission statement and about page (check it out here: https://www.autismspeaks.org/about-us). However, when reading their webpage, I still feel the cure ideology coming through; the organization was created based upon this idea and it will definitely be a hard one to completely get rid of very quickly.

2. Where Donations *Actually* Go

Though they have made these visible changes in words, their spending on cure-based initiatives still shows how much they value finding a cure. The Autistic Self-Advocacy Network (ASAN) posted a copy of Autism Speaks’ non-profit tax exemption form from 2016, with their own commentary on it.

This flyer, made by ASAN, sums up the flaws of Autism Speaks’ spendings, so feel free to check out that flyer here: https://autisticadvocacy.org/wp-content/uploads/2018/03/AutismSpeaksFlyer_color_2018.pdf

3. The Board of Directors

My final issue with Autism Speaks that I will be exploring in this article is who is currently on the board of directors at Autism Speaks. In 2015, when most of the new changes were being tried out at Autism Speaks, they announced that there are now two board members who are autistic.

This might seem great at first glance, but I found some flaws in this looking deeper into the list of board members on their website (found here: https://www.autismspeaks.org/board-directors). First of all, only two out of the twenty-eight board members are autistic; that means that only 7% of the board is actually autistic. Having the majority of representatives at an autism organization being primary non-autistic implies many hurtful ideas, such as autistic people not being wanted or “capable” in their eyes to help lead the organization.

Also, the twenty-six other board members consist of researchers and caregivers who are much older. Within the last few years, the perception of autism has been drastically changed by autistic people communicating their points of view, making the opinions of the older researchers on the board outdated.

New ideas and understandings of autism need to be reflected in how autism awareness and acceptance is going to be spread, but it can’t be shared if the people on the board are viewing the autism community from their rigid, outdated perspectives.

Overall, Autism Speaks has an overall negative view on autism and instead of supporting autistic people, they try to rid the world of our differences. This may seem extreme, but Autism Speaks has done many things to hurt so many people; though they are trying to change their ways, I suggest supporting other, more positive organizations.

Instead of Autism Speaks, there are tons of other options to learn about autism and support the autism community. Check out this list of awesome blogs and organizations that are more positive and supportive of autism:

Autistic Self-Advocacy Network (ASAN): https://autisticadvocacy.org/

The Art of Autism: https://the-art-of-autism.com/

Love and Autism: https://loveandautism.com/

Autistic Women and Nonbinary Network: https://awnnetwork.org/

Autistic Not Weird: https://autisticnotweird.com/

The Caffeinated Autistic: https://thecaffeinatedautistic.wordpress.com/

And here is a list of a few other organizations and blogs that have recently talked about the negativity that Autism Speaks continues to spread (I have only included articles from 2016 and later, since that was the year that Autism Speaks did most of their big changes):



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