It has been about six months since Caroline was diagnosed with Autism.  My heart ached for what the diagnosis meant for Caroline, for our family, and for me.  I immediately went into the information seeker phase; since Caroline’s diagnosis I have read Far From the the Tree, Carly’s Voice, The Way I See It: A Personal Look at Autism and Aspergers, The Reason I Jump, Look Me in the Eye, The Spark, not to mention countless blogs on the subject of Autism.  And I have followed all of the major advocacy organizations on social media.

Recently, I became aware of a controversy regarding the largest and most influential of advocacy organizations for persons with Autism, Autism Speaks.  The deeper I dug, the more my heart sank. My family has only been on the journey with Autism for a short period of time, but we believe it is impossible to separate the essence of Caroline from autism. In other words, Caroline would not be the same person without autism and even if a cure were to be found, I am not sure how we would respond.  Don’t get me wrong, Caroline’s life is full of challenges and my heart aches for each of these challenges. However, some of the most defining characteristics of Caroline are those that are a result of autism: her obsessive love of frogs, her sensory seeking behavior, her wonderful laugh–frequently at inappropriate times- are all from autism. Our family’s approach to autism is what Andrew Solomon, author of Far From the Tree, would consider the identity model, “Fixing is the illness model; acceptance is the identity model; which way any family goes reflects their assumptions and resources.” As logic would follow we invest mightily in resources that will allow Caroline to live the most autonomous life possible (ABA therapy, OT, Speech, music therapy, and opportunities to engage with typical peers).

The more I learned about the mission and agenda of Autism Speaks the more I realized their agenda is based on the illness model. This is demonstrated by the fact that in 2010, Autism Speaks spent just 4% of their budget on providing services to persons with autism. Also, recent comments by their leadership have forced me to realize that Autism Speaks Does Not Speak for my Family.  Suzanne Wright, who co-founded Autism Speaks in 2005, posted a statement (the day before the launch of the Autism Speaks to Washington Summit). Her words were difficult to read.  She describes the 3 million children living in the United States with autism as “lost” and “missing”. She then goes on to talk about the struggles endured by the parents of children with autism:

These families are not living.

They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely – 24/7.

Later, she questions:

And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?

Three times in her commentary, she explains horrible situations that are followed in bold typeface by:

This is autism.

It saddens me that Ms. Wright failed to identify the amazing gifts those with autism share with the world. And further that she fails to realize that autism is part of my daughter’s identity-not her whole identity but part of it. Finding a cure for autism is not the same as finding a cure for cancer it is much more complicated. As Jim Sinclair has explained autism is not an appendage:

“This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,

“I wish my child did not have autism,”

what they’re really saying is,

“I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.”

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces” (Sinclair).

We want acceptance, not a cure.

We want acceptance, not a cure.

With autism comes challenges but Caroline comes with autism. During the tough times, I remind myself autism is tough, loving Caroline is easy. My job as Caroline’s parent is to give her the tools to be as autonomous as she can be in this world; to allow her to unlock her potential, and to let her decide how how she will use that potential  It is surprisingly similar to my job as Vivian’s parent – the only difference is that I need the help of trained OT, PT, Speech, Feeding, and ABA therapists to unlock Caroline’s potential which requires tremendous resources.  Ms. Wright’s words left me looking for an organization that was more closely aligned with our family’s advocacy needs. But when I learned that the Judge Rotenberg Educational Center– an organization with a documented history of abusing persons with disabilities–tabled at the Autism Speaks to Washington Summit, I almost lost my lunch.  Lydia Brown, an Autistic advocate, provides a complete and chilling history of the Judge Rotenberg Educational Center.  I just cannot conceive of supporting an autism advocacy organization that would endorse this group – a group that uses a form of electric shock aversion therapy –  as a trusted resource.

I want to be clear, I know that I have blogged about how trying it can be to be the parent of a child with autism but I hope that I have also shared the joys it brings. Part of the reason that parents of kids with autism have to work so hard and have such long days is because there is not adequate support or services for our children or families. Another major challenge is finding true resources that will help with autism, but when Autism Speaks considers an organization that has sued for the right to use electric shock aversion therapy on persons with autism as a resource, they demonstrate their true goal of eradicating autism, not supporting persons with autism.  For these reasons and many more, Autism Speaks does not speak for me.