Don’t mourn for them

The HBO film Temple Grandin, which I wrote about back when it first aired, recently won 7 Emmy awards, including Outstanding Made for TV Movie. Here’s what I had to say about the movie back then:

I encourage you to watch this film with an open mind. It may just help you understand the sentiment that those with autism are different, but not less, and are most definitely not broken.

This sentiment was flowing in full force at the televised ceremony last Sunday. It is one small step, but what a powerful example Grandin’s life is of what is possible. Even if you can’t imagine it ever being possible.

From her website:

Dr. Grandin didn’t talk until she was three and a half years old, communicating her frustration instead by screaming, peeping, and humming. In 1950, she was diagnosed with autism and her parents were told she should be institutionalized. She tells her story of “groping her way from the far side of darkness” in her bookEmergence: Labeled Autistic, a book which stunned the world because, until its publication, most professionals and parents assumed that an autism diagnosis was virtually a death sentence to achievement or productivity in life.

Dr. Grandin has become a prominent author and speaker on the subject of autism because “I have read enough to know that there are still many parents, and yes, professionals too, who believe that ‘once autistic, always autistic.’ This dictum has meant sad and sorry lives for many children diagnosed, as I was in early life, as autistic. To these people, it is incomprehensible that the characteristics of autism can be modified and controlled. However, I feel strongly that I am living proof that they can” (from Emergence: Labeled Autistic).

All of this has brought back to mind what I – and many – consider one of the most important essays about autism by an autistic person, Jim Sinclair’s Don’t Mourn for Us:

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they’ve been looking forward to isn’t going to materialize. But this grief over a fantasized normal child needs to be separated from the parents’ perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity.

Continuing focus on the child’s autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

Please take a few moments and read the entire essay. You’ll be glad you did.