The Ugly Side of Autism Speaks, Part 2 - What We Can Do About It

NOTE: The following does not represent the views of Kind Tree-Autism Rocks. Kind Tree takes no official position on the actions of other autism-related charities.
 

Last time, I wrote about Autism Speaks and the damage they have done to the autism community. You can read it here. This time, I would like to address what we can do about it. Fortunately, much of what can be done to combat Autism Speaks is also useful to spread autism acceptance.

One of the most obvious things to do is to contact Autism Speaks to tell them directly how they have failed to adequately serve the autism community. We must remember when we do this that this is an organization that has repeatedly shown a resistance to the desires of the community. All statements directed to them should be displayed publicly. One idea that has been employed is open letters. This has the dual purpose of telling the general public of Autism Speaks' actions, as well as demonstrating that they have been informed.

A related tactic is to organize protests of Autism Speaks events, such as charity walks. As long as they are kept completely nonviolent, they can send a powerful message to the participants of the event. I even remember an occasion where an elected official was witnessed removing his Autism Speaks lapel pin in response to a protest by autistic self-advocates.

There are also many of us that choose not to spend money at businesses that donate to Autism Speaks. In addition, it may be of some help to contact those businesses to explain why you will not patronize them. You can find a full list of Autism Speaks donors here. More information can be found at www.boycottautismspeaks.com

Unfortunately, the direct approach is limited in its effect. It can be difficult to rally people behind you when the entirety of your message is in opposition to one organization. Even if it is successful, even if Autism Speaks were to disappear tomorrow, what happens next? What will prevent another organization from taking its place? One that is just as bad, or worse?

It is vitally important to create a positive counter message. One that can stand on its own, should there be nothing to oppose it. I would like to briefly profile two organizations here that do exactly that: the Autistic Self-Advocacy Network (ASAN) and Kind Tree-Autism Rocks. These two organizations take opposite, yet equally important approaches to this.

ASAN is a nationally active political action group that is headed and operated by autistic people. They work to empower autistic people to live full and happy lives, as well as lobbying to create better policy and supports for autistic people. In addition, they work to place autistic people at the center of all discussion about autism. Many of their positions are in direct opposition to Autism Speaks, but central to their cause is the phrase “Nothing about us without us.”

If you are autistic and would like to work toward autism acceptance, ASAN is a great organization to join. If ASAN has no presence in your area, start one, or start a group with similar goals. There are likely others in your area that feel the same way you do.

At the other end, Kind Tree, an organization based in Eugene, Oregon, prefers to remain apolitical, endorsing neither Autism Speaks nor ASAN. Kind Tree focuses primarily on building community, bringing together parents, professionals, and autistics. In this role, staying apolitical is a strength.

When a child is first diagnosed as autistic, the child's parents are likely to look for any information they can find about autism. If you search for autism in any major search engine, Autism Speaks is likely to be the first link you find, meaning that a parent who performs this search will likely become involved. These parents may feel unwelcome in an organization that would openly oppose an organization that they have become involved with.

However, these parents can benefit greatly by talking to autistic adults. They can learn about how their children think, and gain some hope for the future. This is a role that Kind Tree fills very well. By creating a community that is uninhibited by autism politics, Kind Tree brings together people that might otherwise not talk with each other and learn from each other.

Many people have moved to Eugene from all around the United States, in part because of what Kind Tree offers to the community. Indirectly because of Kind Tree, Eugene also has many supports that are not readily available, or sometimes do not even exist, in other areas. I would love to see a time when every community around the country has a version of Kind Tree.

Even if you do not have an organization to join in your area, and do not have the resources to start one, you can still participate on a smaller scale. I have long made a habit of talking about autism with anyone that is willing to listen. As a result, most of my friends no longer view autism as a tragedy, but as an integral part of a complete human being that may even have some benefits. The results of this reach further than you might think. I have had friends tell me about people they have educated, based on what they have learned about autism from me.

As you are telling people about autism, it is important to educate them about the real actions of Autism Speaks. Remember that most people only know what they see in the public service announcements, and many of the supporters of the organization believe they're doing the autism community good. It's up to us to teach them.

It is true that Autism Speaks has made efforts in recent years to present a more positive image. Unfortunately, the combative language that can be so damaging is still present. The respect for the community still appears to be missing. The belief that autism is a disease that must be cured before the person can be complete is still out in the open. Until this changes, we must continue to work against them. We must show the world what autism can contribute to society.

Celebrate Neurodiversity!