I have often written of the major mainstream media institutions glossing over the harsher realities of autism disorders as experienced by those with severe Autistic Disorder.
One of my friends, a determined autism dad/advocate from British Columbia, re-posted on Facebook an exception to this tendency and I thought it appropriate to mention again this realistic coverage of the challenges faced by a severely autistic adult.
One of my friends, a determined autism dad/advocate from British Columbia, re-posted on Facebook an exception to this tendency and I thought it appropriate to mention again this realistic coverage of the challenges faced by a severely autistic adult.
In Growing Old With Autism TIME published an article by Karl Taro Greenfeld about his brother Noah Greenfeld, 42 when the article was originally published, in May 2009:
"Noah, my younger brother, does not talk. Nor can he dress himself, prepare a meal for himself or wipe himself. He is a 42-year-old man, balding, gaunt, angry and, literally, crazy. And having spent 15 years at the Fairview Developmental Center in Costa Mesa, Calif., a state facility, Noah has picked up the con's trick of lashing out before anyone could take a shot at him.
Noah's autism has been marked by "three identified high priority maladaptive behaviors that interfere with his adaptive programming. These include banging his head against solid surfaces, pinching himself and grabbing others," according to his 2004 California Department of Developmental Services individual program plan (IPP). Remarkably, that clinical language actually portrays Noah more favorably than the impression one would get from a face-to-face meeting. (See six tips for traveling with an autistic child.)
Despite the successful marketing of the affliction by activists and interest groups, autism is not a childhood condition. It is nondegenerative and nonterminal: the boys and girls grow up. For all the interventions and therapies and the restrictive diets and innovative treatments, the majority of very low-functioning autistics like Noah will require intensive support throughout their lives. If recent estimates of prevalence by the Centers for Disease Control and Prevention are accurate, then 1 in 150 of today's children is autistic. That means we are in for a vast number of adult autistics — most better adjusted than Noah, some as bad off — who will be a burden to parents, siblings and, eventually, society.
We are largely unprepared to deal with this crisis. ..."
There are some who can flippantly ask ... autism crisis ... what crisis? Karl Taro Greenfeld is not one of them. Nor am I as the father of a 14 year old boy severely affected by his Autistic Disorder. In our house the Autism Crisis is very real and never out of mind.
4 comments:
It is interesting because many with HFA would say media coverage is slanted towards those with LFA. Kind of reminds me of how liberals think the media is conservative and conservatives think it is liberal.
I really fear for many families who will need support for their adult children with autism in the near future. Our existing care facilities offer so little now with their limited knowledge and understanding of autism. I speak to parents of young children and teens with autism and say, "don't wait to address what will be an incredible need in a very few years" but they are stressed by the needs of "today" for their children with autism.What can we do today to prepare for tomorrow??
The remark about learning, in the institution, to lash out first is so, so true. After a bad fire (no one hurt) my son was ordered into a residential school (Woods - remember them?) - and placed in a building that focused on medically fragile children. He is very active - and soon learned the power of getting people to flinch. . . we pulled him out (horrible scene, that) and, over time he's grown... and learned that if you can't make people flinch, slug them. And THAT's something that really needs to be looked into: institutions and learned responses. Anecdotally, this comes up again and again. It has a lot to do with lack of training among direct care staff, but also lies in the short-sighted basis of the "interventions" - those cute little kids DO become adults. Forcing compliance should not the beginning, middle and end of therapy. And therapy should not stop when the student hits puberty! We hear: too old for it to be effective, or teach them to sit at a desk packaging widgets as long as possible... I'd have a meltdown too! especially if I couldn't request a break, or seek different work.
I read his book recently and it was amazing! It made me feel very sad...but also very grateful that my son was born in a time of more "enlightened" early intervention. Or that we were just fortunate enough to have made huge progress since diagnosis.
Best,
Jane
The Petticoat Polymath -or- Jane-of-all-trades:
Musings on Disability, Health, Parenting, Politics, and all sorts of other stuff!
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