December 15, 2009

Autism is a World...Yeah, Let's Go With That

On Saturday, The Mister and The Boy visited the library. They returned with many treasures - among them, a DVD of "Autism is a World", which is a documentary about a 26-year old woman with autism.

It was the most depressing thing I've seen in a long time. First of all, I believe the young woman, Sue Rubin, has more than just severe autism as a diagnosis. Until she was 13, it was assumed that Sue was mentally retarded (they used that phrase back then; today she'd be referred to as developmentally delayed, or developmentally handicapped).

At age 13, she was introduced to Facilitated Communication (FC) - that's where they use a keyboard with speech capability to allow her to communicate her ideas and feelings. I have no personal experience with FC - The Boy is certainly verbal. But in this video, and in other programs I've seen, it appears, at least to me, that the caregiver is the one moving the keyboard around so the 'correct' letter is pressed. Or else the caregiver spells the word, and Sue presses the button a second later.

It all seems like hocus-pocus to me. As I heard Sue do some inappropriate vocalizations in her college classroom, I just felt like there was no way that this young woman is actually getting anything out of the material presented. I assume that her caregivers were reading all of her assignments to her - one of them sat in the classroom and took all her notes - as Sue sat playing with her spoons (they give her comfort).

The part of the documentary that made me cry was the final 10 minutes or so. Two of Sue's longtime companion/caregivers were leaving her - there were no replacements lined up to step in and continue assisting her. Sue needs 24-hour assistance. She lives away from her parents, but her mother is still very much her advocate.

I couldn't help but worry about The Boy's future. His autism is not nearly as severe as Sue's (but they do both share an affinity to water and it's calming properties). His diagnosis of bipolar disorder puts an additional wrinkle in the fabric of his life. Will he be able to live independently? Will he have a job? Will we be able to find him adequate caregivers to keep him on track? Will he continue to be compliant with meds? Will someone make sure he goes to appointments and actually fills the prescriptions - and takes the medication?

What happens when I die? When I am no longer around to advocate for him, will he slip through the cracks? Will he end up in prison because he made threats or hit someone?
This fear is real - it is estimated that sixteen percent of all prison inmates suffer from a mental illness. I could not find any statistics about autistics in prison...but remember, he has three arrests on his juvenile record since 2006 (so we know all too well that there is a distinct possibility of a repeat performance).

Who will look out for my son in my absence?

Here's part 5 of Sue's documentary, and links for the other portions.

Part 1
Part 2
Part 3
Part 4


  1. This is such an epidemic in our world right now..the statistic used to be 1 in 10,000 and now, it is 1 in 94 boys. I hope they continue to press on the resources they need to fund research to get to the answer.

  2. I hope you will never have to find out the answers...I hope that they are able to find reasons and answers

  3. I wish I had something helpful to say but I'm not sure I do. Sending hugs.


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