Autism DOES speak, but not through neurotypical lobbyists.

When necessary, I will count myself as a neurodiversity activist.

Every now and then, something pops up in my digital universe from Autism Speaks, a national organization whose mission statement reads:

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

The most troubling part of this to me is the use of the word "cure." I do not believe that autism should be cured. I believe the disorder should be understood, and its symptoms treated only as much as they need to be for a person with autism to live a fulfilling life, whatever that means to them. I believe that all ways of experiencing the world are good ones, and we should strive to understand and facilitate as many different ones as we can.

Even more troubling to me is the portion of their current "Founders' Message" that reads:

"This disorder has taken our children away.
It's time to get them back."

NO. This disorder has not taken your children away. This disorder has given you a child who is different from the one you expected. That happens to parents who expect a girl and get a boy, who expect a straight child and get a gay one, who expect a star athlete and get a brilliant astronomer, or who expect one baby and get twins. This child is still your child, is still a human being, and still deserves to be treated like any other child who experiences the challenges of growing up in a society where not everyone understands that everyone--EVERYONE--is different from each other. If you truly believe that a disorder like autism can take your children away from you, then you probably should not accept the commitment to raise a child in the first place.

I have known many people with autism spectrum disorders, and I expect to come to know many more. The ones who thrive have families who accept and understand their differences and support them through the challenges those differences create. People with autism can express themselves and build relationships when they are provided with the tools they need to do so--see also, the reason i became a speech-language pathologist. Everyone uses different means to communicate, and it is my firm belief that everyone has that right. That means that if someone communicates in a different way than you do, you're not off the hook for trying to understand them, and it is NOT your responsibility to try to "fix" the way they communicate, because there is nothing wrong with them.

The reason Autism Speaks appeared in my life again today is because New York state just passed a new law regarding insurance for treatment for autism. On its face, this is a great thing. Tucked inside the article is the following: "[t]he new law will provide coverage of evidence-based, medically necessary autism therapies, such as applied behavior analysis (ABA). It will . . . allow up to $45,000 a year in ABA treatments with no limits on age or number of visits." There is no discussion of other "evidence-based, medically necessary autism therapies."

For those of you who don't know about ABA, it's a cognitive-behavioral therapy system based on Skinnerian psychology. It is the most basic form of behavior modification. Reward desirable behaviors; redirect and/or ignore undesirable ones. Basically, ABA involves training children with autism much the same way you train a dog.

As a clinician who works with people on the autism spectrum (and people with other cognitive differences), I know that behavior modification strategies work. Sometimes, you need to use them. But in my perception, the reality of ABA is that it dehumanizes the people on whom it is used, reducing them to "trainable" creatures who can complete tasks on demand, but not helping them to learn the generalizable skills they will need to succeed in society.

While I was poking around to further justify my frustration, I learned about the Combating Autism Act, which was passed in 2006 by then-President Bush, and the Combating Autism Reauthorization Act, signed into law on September 30 of this year by President Obama. First red flag: "Combating"? Red flag confirmed: Wikipedia quotes the founder of an organization called Cure Autism Now as saying, "This bill is a federal declaration of war on the epidemic of autism . . . It creates a congressionally mandated roadmap for a federal assault on autism . . ." Cure Autism Now is a now-defunct organization that merged with Autism Speaks in 2007.

Why are we treating a biological difference as an object of war, one that requires "federal assault" instead of understanding and support? This is more than unethical; it's downright scary. If our government can declare war on one mental disorder, then they can declare war on all mental disorders: depression, substance abuse, schizophrenia, PTSD.... If they declare war on those biological differences, who's to say they can't declare war on physical disabilities, sexual orientations, races & ethnicities? It's a slippery slope, and the governmental course is driven not by the people who face these challenges themselves, but by people who feel so slighted by a genetic improbability that they refuse to understand those challenges.

If you love your children, don't try to cure them. Try to see the world through their eyes, and I promise you will love them even more.

Advocacy for people with autism and their family members is incredibly important, especially while groups like Autism Speaks have enormous platforms to promote misguided information and agendas. I understand that the families of people with autism need support--I'm part of one. I implore you, if you need support or just want to know how you can help, please check out the Autism Society of America. You won't be disappointed.