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Dachel Media Review: Autism's Forever Children Growing Up

Online newsBy Anne Dachel

It seems that the mainstream media intends to talk about the needs of adults with autism in the same apathetic way they do about children.

October 9, 2010, New York Times: The Architecture of Autism


"Here is a truth about children with autism: they grow up to become adults with autism. Advocates estimate that over the next decade some 500,000 such individuals will come of age in the United States.

"No one can say for sure what adulthood will hold for them. To start, where will everyone live and work? A 2008 Easter Seals study found that 79 percent of young adults with autism spectrum disorders continue to reside with their parents. A solid majority of them have never looked for a job. ...

"And yet the life expectancy of people with autism is more or less average. Here is another truth, then, about children with autism: they can't stay at home forever.

"This realization - as obvious as it is worrying - has recently stirred the beginnings of a response from researchers, architects and, not least, parents. In 2009, a pair of academics, Kim Steele and Sherry Ahrentzen, collaborated on "Advancing Full Spectrum Housing," a comprehensive design guideline for housing adults with autism. (An expanded book on the topic is scheduled to come out next year.) ...

"It's that middle item, the cost, that presents the most obvious barrier. A couple of scholarships aside, families pay $39,000 a year for a child to live at Sweetwater. That expense, said Ms. Steele, the researcher, 'will preclude people who don't have a trust fund or wealthy parents from living there.'"

Read the first sentences above.  Is this just more of the mystery of autism?  No one knows what's ahead for half of million young adults with autism who will age out of school in the next 10 years?
 
The tone of this piece talks about housing for autistic adults as if it's something about accommodating the needs of aging seniors in a retirement community.   The masses have happily accepted an epidemic number of children with autism and I guess they'll just have to do the same with the tidal wave of adults who've never been here before.
 
There's one very important question that should be in everyone's mind as they read this article: WHY ARE WE HAVING TO COME UP WITH RESIDENTIAL CARE FOR AUTISTIC YOUNG ADULTS?

Why can't young adults go where autistic adults have always gone?

Why can't anyone show us the 40, 60 and 80 year olds out there who are on the autism spectrum---the middle aged and elderly with the same symptoms we see in our children?
Why is the rate ONLY BASED ON STUDIES OF CHILDREN?

Reporter Michael Tortorello is proof that the media is still stumbling around in the dark about autism and no one is even looking for the light switch.  Tortorello writes, "No one can say for sure hat adulthood will hold for them."  Why not?  Haven't we always had autistic adults?  If this is something new, shouldn't we all be scared? 

Tortorello writes about accommodating a disabled population we've never had to deal with before--ever. He doesn't even realize it.  He's also talking about a cost to families that few of them will ever be able to afford.  This comes across as a feel good, human interest story.  See, people are doing something about autism.  In truth, it's quite clear that the tidal wave of autistic adults will simply bury us.
 
I would ask Mr. Tortorello to look at this story from Utah, also on Oct 9, 2013.
 
University of Utah Health Care revamps clinic to focus on autism spectrum disorde

 
"University of Utah Health Care recently revamped one of its clinics, now called the Autism Spectrum Disorder Clinic, to meet the growing needs of people from toddlers to adults with autism spectrum disorder - including 1 out of every 47 children in Utah....

"'We're really expanding the different social skills groups to provide a much broader array of groups that children and adults can participate in based on what their functioning level is and what they want to get out of it,' Bilder said. 'And that just isn't out there in the community.'

"Connelly agreed that there aren't enough services for the community's needs, especially for individuals older than 5, and she hopes the new clinic will help fill the gap....

"Regardless of the numbers, Bilder said it's important for caregivers and parents to know what the signs of autism spectrum disorder are and seek out help for those who may have the disorder. More information can be found at firstsigns.org."

There aren't enough services, but again we're not told why there are growing needs.  We're told, "Regardless of the numbers."  It seems no one wants to face what a rate of one in 47 really means.
Then on Oct 10, WHEC in Rochester NY published, New York State Exposed: Autism programs losing out?

"In our exclusive series, 'New York State Exposed,' we're tackling tough issues that affect your life, family and money. Right now, thousands of families in our community are impacted by autism. That's a challenge in itself. But some claim they're facing another battle when it comes to medical treatment because of how New York State funds programs for children with autism. Some experts say it is costing the taxpayer more in the long run.

"Kids diagnosed with autism can and often do have a very bright future, but not without a lot of work. They need special services, treatment and training as early in life as possible and all the way into adulthood. But if they don't get what they need, they end up costing taxpayers millions of dollars and families a whole lot more than just money....

"Jones said, 'I think we need to look at where is the funding going, how is it being spent, how we can redirect some of those funds to focus more on autism as we know the increased prevalence of autism is about 78 percent since 2008.'...

"Families all over the state are praying Albany will do something more to help with this growing problem."

After going over these three stories, all I can think is that the needs of autistic Americans both now and in the future are too massive to comprehend.  It's being talked about mostly on a local community level right now.  I don't think the people involved can fathom where the money will come. On a national level, no one even brings up the subject.  Too many questions would be asked. 
 

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