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Failing our Autistic Children: What if Your Child was Home Alone?

Smart cookieManaging Editor's Note: This article struck me as incredibly important - I hope you agree.  Peter Gerhardt nails the importance of daily living skills in addtion to academics.  From The Record in Stockton, CA.  Thank you to Roger Phillips.

By Roger Phillips
Record Staff Writer
March 18, 2012 - 12:00 AM

STOCKTON - During a freewheeling daylong discussion of autism in young adults Saturday, there was one message above all that Peter Gerhardt was trying to transmit.

The educational system, he said, is failing to adequately prepare children with autism for independence as adults.

"I'm very tired of meeting adults with autism who can do a math worksheet properly but can't cross the street by themselves," Gerhardt told an audience of perhaps 200 educators and parents - and a few young adults with the disorder - at Saturday's annual autism forum at the San Joaquin County Office of Education.

Gerhardt, director of a school program in New York that serves adolescents with autism, has worked in the field for more than 30 years. He visited Stockton to drum home the point that the educational system that is serving children with autism is inadequately preparing them.

Autism is a developmental disorder characterized by deficits in social interaction and communication. People with autism typically have a very limited range of interests, and frequently, they engage in repetitive activities. Diagnoses of autism have soared in recent years.

Gerhardt's discussion of autism touched on sexuality, social skills, employment and the use of leisure time. Independence was the overriding theme; young men and women with autism deserve to be trained to be as self-reliant as possible, he said.

"Our job as a field is so 'dayhabilitation' is only for people who need that level of service," said Gerhardt, 52. "Right now, you're either very, very independent or you need 'dayhabilitation.' There's nothing in-between."

Gerhardt played off the title of the movie "Home Alone."

"What would your (autistic) son or daughter do if left alone for 48 hours?" he asked. "Sadly, in many cases, not very much."

In some instances, the task is to train the young adult to be more socially appropriate by adapting his leisure activities to his chronological age. Gerhardt gave the example of weaning an autistic adult's musical tastes off of Raffi and onto Jack Johnson.

"Jack Johnson," Gerhardt said, "is Raffi for adults."

Sometimes, the obstacle is a "neurotypical" person - someone who does not have autism - who refuses to find a way to accommodate an autistic individual. Gerhardt quoted a young woman with autism who asked, "If I was a wheelchair user, would you say, 'I'd love to hire you, but first you have to learn to walk?"

And sometimes, the roadblock is that a student's public behaviors don't conform to societal norms. This can result in being ostracized, though Gerhardt joked that this is rarely a problem in Manhattan, where he works.

"I'm really not concerned about my guy getting noticed at the Dunkin' Donuts at 25th Street and 10th Avenue," he said, "when my guy is probably the most appropriate person there."

Gerhardt said preparing autistic children to lead happy, productive lives involves much more than attempting to maximize their academic potential. He said too much energy is spent on creating abstract plans for an autistic child's adulthood, not enough on ensuring that the actual outcome is successful.

He said he does not like to classify autistic people as "high functioning" or "low functioning" because he knows autistic people with IQs of 140 who are "not functional" and others with IQs of 40 who are "very functional."

Independence, he said, should be the focus of all Individual Education Plans written by school officials for their autistic clients, because independence is the key to fulfillment.

"We need to focus on skills that really make a difference in a person's life," Gerhardt said. "If we're not providing skills that transfer out of the classroom, that's a real problem. When is the last time any of you wrote an IEP where the goal was happiness?"

Contact reporter Roger Phillips at (209) 546-8299 or rphillips@recordnet.com. Visit his blog at recordnet.com/phillipsblog.

Comments

Roxanne Rice

I think the landmark sign is for them to be happy. My 22 year old Son who has Autism is pretty severe. Yet, he is well behaved and happy! He is the only one of my Children that I do not have to tell to pick up after himself. He goes to bed on his own and gets up on his own.
I wish he could do more but, I focus on what he can do, not what he can't do.

Alisa Rock

To get a good school placement in an urban environment, you need diploma track not IDL track. Otherwise they put your child in an inappropriate school. Think Peter has excellent, excellent point but execution of this requires fixing school systems, a big and daunting task.

Donna L.

Well said, Cherri! You just summarized everything I've been thinking about/obsessing over since I read this article this morning, but have been too tired to put into words. Thank you.

Cherri- Ben's mom

There is another side of this story and this belongs to those children who have been pigeonholed into "independent living skills" training since age 3 when they transitioned into the public school system. When it appears likely that a child with autism will not become verbal, the educational system decrees that there is no need to teach them ANY academics, as of course, everyone knows that non-verbal people can't read (sarcasm from me- their actual belief). So only the most basic and infantile reading and numbers are ever taught- and without a decent output option and little motivation for the subject students don't show what they know- and the stereotype of ID/MR is promulgated.

So we have a substantial subset of people on the autism spectrum whose bodies simply won't function properly, but whose minds will (when the apparatus that creates speech doesn't function, frequently other kinds of movements- hands, balance, etc. are equally affected- so no ability to hold a pencil, unpredictable gestures, etc. )and they are subjected to endless repetition of banal activities geared towards "independent living", all provided in a sing-song baby-talk teaching style. Not surprisingly, before too long negative behaviors crop up. Now we have a teen or pre-teen labled ASD, ID/MR and behaviorally challenging.

Only when parents scream "Enough!" and start to color outside the Double-Blind-Placebo-Controlled lines of ABA and pharmaceutical drugs with interventions like Supported Typing (formerly known as Facilitated Communication), RDI and stick with biomed and then insist on inclusion will our kids learn to become cognitively and communicatively independent.

Some people with autism MAY never be able to be safe "Home Alone" due to the significance of their condition, but they should never be left alone with their thoughts because no one believes they have an inner life worth sharing.

Deb O.

As part of homeschooling my 16 yo son with HFA, we work on daily life skills. He can cook a simple meal, do laundry, vacuum, remake a bed, install software on a computer, make phone calls or texts, compose and send emails, and even plunge a toilet or check the circuit breakers and reset them. We are working on personal finance. My biggest concern is him being abused by others.

Benedetta

Our plan is to play the lottery when it is really, really high and then our kids woull be set!!!!!!

Anne McElroy Dachel

I totally agree with Peter Gerhardt. We're facing a national emergency as more and more young adults with autism age out of the school system with no place to go. No one has been sounding an alarm. As someone who's worked with dozens of children with autism, I can tell you that every parent I know is worried about this. My 25 year old son with Aspergers is in a similar situation. He's be very capable of doing something, yet people would have to understand his limitations. So far, no one here working with disabled adults had managed to find anything for him. I have to add that none of these people has training or real experience working with autistic adults.

There is something very concerning in this Stockton story. We're told that Gerhardt has worked in this field for over 30 years. Why isn't he talking about what he's observed happening? Thirty years ago the schools were not being flooded with developmentally disabled students like they are now.

"Diagnoses of autism have soared in recent years."

So often in stories we're given a passing comment about the epidemic increase in autism. It's usually something brief like this statement or it's a passing reference to the rate, "One in every 110 children now has autism according to the Centers for Disease Control and Prevention." No one even bothers to try to explain why it's happening. It's just the way it is. We're being told about a disaster that we're going to have to do something about without anyone asking for real answers.

I would remind everyone that no one at the CDC or the American Academy of Pediatrics has ever called autism a crisis. For years experts have told us that all the autism everywhere is nothing new. It's just better diagnosing of a condition that's always been around. Millions of research dollars have gone into dead-end genetic research. One percent of children now have autism. No one is concerned that when the numbers are finally updated, they'll be even worse.

The real story about failing our autistic children is our blind refusal to address why so many children are disabled.

Anne Dachel, Media

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