A blog about resources for autism and care and treatment.

Wednesday, November 27, 2013

Let Our Life Songs Sing – Together

The autism community has been galvanized by the recent resignation of John Robison from his role at Autism Speaks, the largest and most powerful autism advocacy organization in the world, due to comments from founder Suzanne Wright. Robison, who has Asperger’s, acknowledges that autism confers “both gifts and disability on everyone it touches.”

Robison vehemently disagreed with Mrs. Wright’s description of autism as a “monumental health crisis” devastating the lives of millions of families around the world, leaving them depleted, both emotionally and financially.

Mr. Robison and Mrs. Wright, you are both right. I know individuals on the spectrum like Alex Plank, the founder of Wrong Planet, who are higher functioning and far more talented than most of my friends. But come to my offices at ACT Today! and look at the files from families who have received or are awaiting grants. There’s a different story to tell. Read about the grandparents living on Social Security who want behavior therapy for their 13 year old grandson, abandoned by his parents, so he can be toilet trained and learn to dress himself before they die, so in their words, he will have “less of a chance of being sexually molested in a home”. Read the requests of a single mother who works the night shift and moved back in the 2 bedroom house of her parents, who wants an iPad so her non-verbal child can type "I love you", words she will never hear spoken. Read the request from the father who wants to help his son stop the severe repetitive behavior of picking at his infected eye, which doctors will have to remove if something cannot be done.

These voices deserve to be heard as well, and it is downright shameful, that in a country as wealthy as the United States of America, that they need to apply to a nonprofit to get help.

As a nation, we need to become more accepting of autism and those with it, and we need a national plan to help the legions of families that have members who are lower functioning and cannot get the care and treatment they need. I once met with the Chairman and CEO of a major entertainment conglomerate, who generously agreed to run a public service announcement on autism awareness for the military family, then who asked me “Why are there so many of you? (meaning autism organizations) and why can’t you guys come together?” Indeed, why can’t we?