Over on Skepchick we recently got a question from Paul about the differences between the organization Autism Speaks and alternate viewpoints on autism. He asked:

I’d like to hear (read) the Skepchicks’ take on ActuallyAustistic vs. AutismSpeaks. I must confess to only having heard of the former just recently (a half-hour ago). After a half-hour of googling, all I can seem to find on ActuallyAustistic are blogs with accusations and no sources, false dichotomies, and other tricks of the propaganda trade. It’s raised a flag. It’s possible that the only sites I’ve found in my half-assed research just happened to be of this nature. But clicking on the ActuallyAutistic hashtag reveals a frightening number of posts all parroting the same stuff. It’s smells a bit of anti-sciencism.

I definitely understand Paul’s confusion on this topic, and I hope to clear some of it up. Jumping into the world of autism advocacy can be pretty confusing at first, since so many autistic people are opposed to the largest and most visible advocacy organization that claims to speak for us.

Content note: I will be discussing a lot of hate speech directed at people with autism on this post. Some links are especially hard for some people to read or watch.

Let’s start by making one thing clear. While Paul compares Autism Speaks with Actually Autistic, this comparison isn’t very useful. Autism Speaks is a large formal organization, with non-profit status, a huge budget, and the capacity to get its message out. Billboards from Autism Speaks are common and they have the ability to lobby governments.

On the other hand, #ActuallyAutistic is a hashtag. It’s not an organization, official group, or cohesive force of any kind. It comes out of a larger movement for autistic liberation, but there is no organization with that name. There are organizations working towards different goals than Autism Speaks, though, and I’d like to use this as an opportunity to contrast those movements with the Autism Speaks viewpoint.

There are groups in opposition to Autism Speaks, like Boycott Autism Speaks. There are also other advocacy groups that are run by autistic people, like the Autistic Self Advocacy Network or ASAN.

You’ll notice I said “run by autistic people” regarding ASAN. This is noteworthy, because Autism Speaks does not have any board members with autism. Their board consists mainly of parents of children with autism and corporate executives (or both). The founders of AS began the organization when their grandson was diagnosed.

Why is this a problem? Well, if autistic people are are a group that experiences discrimination in the world, wouldn’t it make sense to include our viewpoints in the largest advocacy organization that claims to speak for us? If this were happening to any other group people would be rightly outraged. If the largest organization lobbying for transgender people was run only by cisgender people I’d be furious. It would be clearly offensive and ridiculous if a bunch of white people were deciding the priorities and work of the NAACP. So it makes sense to me that people are upset by having the voice of the autistic community being run by an entirely allistic board. The term used in many parts of the disabilty rights movement is “Nothing About Us, Without Us”, and this basic tenant of disability rights means that ultimately those who have a disability should have active involvement in the decisions that impact our lives.

AS did have a board member with autism at one time. In November of 2013 board member John Elder Robison, the author of Look Me In They Eye, wrote a letter resigning from the board due to what he viewed as the destructive messages that AS delivers about autism and autistic people. In his own words:

I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.

This is really the key here. While information floats around on the web about the many complaints autistic people have for AS, such as the low amounts of funding AS provides for family services and their (now past) history of promoting anti-vaccination messages, the key is in the demonetization of autistic people. Robison and many others see the messages of AS as being actively destructive. In an effort to increase awareness, AS paints autistic people as a tragedy.

When we see messages about the “epidemic” or “national crisis” of autism, or fear mongering billboards we can take it personally. It often seems like AS is not so interested in making our lives better, but instead show a desire to eliminate us. These messages lead to fear in the people in our lives too – they are highly effective at scaring the pants off of parents and family members of autistic kids. They lead to incredible misunderstandings of autism among teachers, classmates, and potential romantic partners. Instead of spreading a better understanding of people with autism to make us less confusing or frightening to the general public, these messages make our lives WORSE.

AS has been responsible for some of the worst messaging imaginable. The “I Am Autism” advertisement video is a notoriously strong example. The transcript can be found here for those who don’t want to watch this nasty video. This ad isn’t even the only one. They also created the Autism Every Day ad, compare autism to a deadly pandemic and much more.

I want to be clear here: Many people with autism are significantly disabled by it, and a lot needs to be done to make their lives better. Many of us just want more understanding, a society that can accommodate us better, and less fear. Everyone with autism would benefit from increased awareness of the realities of living with autism spectrum disorders, and all of us are hurt by the messages of fear spread by Autism Speaks. Whether we consider autism to be a disease or not (many of us do not) and whether we want to see more research into preventing it or not (again, many of us do not), our voices should be the ones heard on these issues. Those of us who are impacted by autism and live with it every day should be the ones deciding what’s best for us.

Instead, Autism Speaks is the voice most people are hearing. Is it any surprise that movements like the #ActuallyAutistic hashtag rise up in an attempt to make our voices heard?