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Lack of state services for aging autistic makes adulthood like 'falling off a cliff' via Detroit Free Press

Posted by on Apr. 25, 2012 at 11:39 AM
  • 2 Replies

Lack of state services for aging autistic makes adulthood like 'falling off a cliff'

Real Skills Academy owner Rachel Duncan teaches Nick Gammicchia, 20, of Shelby Township, Mich. how to use the driver simulator at the driving school for students with disabilities in Waterford, Mich. on Wednesday, April 18, 2012. Gammicchia, who has autism, came for an initial assessment to see if he is a candidate for driving. The driver simulator tests skills such as hand-eye coordination, reaction time, and basic driving skills.
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Patricia Beck
Nick Gammicchia, 20, of Shelby Township, Mich. points to a side view mirror when asked by Real Skills Academy owner Rachel Duncan, in passenger seat (view mostly blocked by Nick's raised arm), 38, of Waterford, Mich. where the vehicle mirrors are located. They go through the location of the car's controls at the driving school for students with disabilities in Waterford, Mich. on Wednesday, April 18, 2012. / April photos by PATRICIA BECK/Detroit Free Press
The Gammicchias, clockwise from left, Nick, Carolyn, 53, Alex, 22, and Andrew, 53, touch hands after a prayer at their Shelby Township home.

Nick Gammicchia knows exactly what he's going to do in the future.

"I'm going to Hollywood to help out movie producers, storyboard artists," Gammicchia said.

He already has drawn several storyboards and even sent a storyboard and screenplay to director Steven Spielberg.

"He's got big dreams," his mother, Carolyn Gammicchia, said with a smile.

Nick Gammicchia, 20, is one of the thousands of Michiganders withautism spectrum disorder, commonly referred to as autism.

The number of those diagnosed with autism has increased dramatically in the last 20 years, threatening to overwhelm the already limited services available for those like Gammicchia, who are entering adulthood with the brain disorder. Autism causes difficulties with social interaction and verbal communication.

Today is the Living with Autism Workshop in Troy, the state's largest autism conference, featuring Lt. Gov. Brian Calley, whose daughter has autism. The event and others have been held to create greater awareness this month, which is Autism Awareness Month.

Schools across the state have programs for kids with autism starting as young as 3 and going as far as 26, depending on their needs.

But that support ends once they are out of school. Most of those aging into adulthood will find an alarming lack of services designed to help transition into the next stage of their lives. An estimated 500,000 kids in the U.S. with autism will turn 18 within the next five years -- more than 5,000 of them in Michigan.

"It's like falling off a cliff," said Kathy Sweeney, director of OUCARES, the Oakland University Center for Autism Research, Education and Support.

Without continued assistance into adulthood, those with autism are likely to regress and lose some of their hard-won verbal and social gains, according to a 10-year study published this year by Washington University.

"Unfortunately, adults leave their educational entitlements and there are no adult entitlements," said Leslie Long, director of housing and adult services for Autism Speaks, a national advocacy group.

And their options for living at the full extent of their abilities will be severely limited. Some experts estimate that 90% or more of adults with autism spend their lives in their parents' home or group homes, playing video games or drawing pictures -- over and over and over.

Gammicchia's parents are determined that won't happen to him.

"His goal is to live independently, and that's what we're working on," his father, Andrew Gammicchia, said.

Getting a job

Nick Gammicchia is in the middle of the spectrum, sometimes even performing on a high level. He needs transition services to help him work on a higher level more consistently if he's going to become independent, his mother said.

Many of those with autism can work with support, said Cynthia Wright, acting program innovation director for Michigan Rehabilitation Services, which helps those with disabilities gain employment. Almost 4% of the more than 38,000 people the MRS served last year had autism.

What kind of job a person with autism can get depends on where he or she is on the autism spectrum.

"You can have IT people that are brilliant," Sweeney said. "But there are also individuals who are nonverbal and don't have jobs."

Those with autism often bring special talents to the workplace -- they can focus well and don't mind repetitive tasks, for example. However, they often need support to get into the workplace.

They may need coaching on workplace etiquette or other lifestyle issues. A coach may conduct practice job interviews, help fill out an application, go to work in the early stages of a job, or even advocate on their behalf with an employer.

But the explosion in the number of those with autism is far outstripping the funding for MRS and other organizations that provide support services for adults with autism.

According to the Centers for Disease Control and Prevention in Atlanta, 1 in every 88 children will have autism. In 2000, the CDC found 1 in 150 had autism. The increase is thought to be because of improved diagnostic methods.

Gammicchia was diagnosed when he was 2. His parents realized something was wrong when Gammicchia couldn't make eye contact with anyone. He wouldn't respond to his name, hated to be touched and was prone to actions that could hurt himself or others, such as banging his head on a wall or another person. But the diagnosis hit them hard.

"We sat in the car, and we cried," Carolyn Gammicchia said.

Determined parents

A doctor told them to concentrate on their other son, Alex Gammicchia, who is two years older than Nick, because Nick Gammicchia was going to end up institutionalized. Instead, the Gammicchias, both Detroit police officers, quit their jobs and moved to Shelby Township, where they believed they would find better services for Nick Gammicchia.

Gammicchia was the first student with autism to be mainstreamed into a regular classroom in Utica Community Schools, his mother said. His parents pushed for the inclusion.

"If their parents are not aggressive, pushy, determined, they're in the stay-at-home bunch" instead of becoming independent, said Thomas Brown, a psychologist and director of the Autism Support Center in Auburn Hills.

Gammicchia's parents are looking at all options in their quest to help him become an independent adult. Gammicchia and his parents are exploring whether he can get a driver's license. He has a part-time job washing dishes at a local banquet hall.

He's attending classes at Macomb Community College.

"Learning. Looking for news. Just thinking," Gammicchia said, when asked what he likes about learning. "I'm wondering. I'm curious. I have a mystery to solve."

His brother is Gammicchia's college support network. The two are in the same program, media and communication arts, and share the same classes.

"I try to help him understand his assignments in class, take down notes, go to class with him," Alex Gammicchia said.

The Gammicchias, who are not wealthy, have made financialarrangements for Nick Gammicchia for when they die that will be administered by a group of people who understand his wish for self-determination.

Gammicchia's parents said they think that living in a college dorm that has a program for ASD students would be a good step toward independence, and have been investigating programs for him. Gammicchia wasn't so sure.

"I'm going to live in a hotel," he said when asked about a college dorm. Living on his own, his parents concede, is still a goal rather than a reality.

But Gammicchia has been working on starting conversations with girls, his mother said.

"I will have a girlfriend when I'm 21 years old," Gammicchia said.

His parents also are establishing a greeting card business for him using his drawings called Nick's Art Project. They're considering a 10-week program in the film industry for those with autism.

But the reality is there may not be a lot of job options for Gammicchia.

"Opportunities for employment are very limited, if there are any at all," Brown said. "Sometimes they do qualify for Medicaid; they get some job training, job placement."

But, Brown said, "there's not enough money in the pot."

Still, the Gammicchias said they will continue to work toward Nick Gammicchia's independence.

They have reason to hope. Fifteen years ago, they just wanted him to be able to say. "I love you," and five years ago, their goal was to keep him from spending all his time sitting on the couch watching TV.

Ten years from now, they see Gammicchia living on his own with support. Twenty years from now, they dream of him living independently.

"He's surpassed every goal we ever had," Carolyn Gammicchia said. "We just want him to be able to do what he wants to do, to have choices."

Contact Peggy Walsh-Sarnecki: 586-826-7278

More Details:

Where to get help

• Michigan Rehabilitation Services assists those with disabilities in finding employment: 800-605-6722 or mrs-customerassistance @michigan .gov/lara.

• Michigan Department of Community Health provides services for those with mental health issues or developmental disabilities: 517-373-3740 or

• Disability Network Michigan operates 15 Centers for Independent Living: 517-339-0539 or sara

• Almost all colleges and universities have offices to provide assistance to disabled students.

More Details:

OUCARES symposium

OUCARES, the Oakland University Center for Autism Research, Education and Support, is holding its fourth annual symposium on autism spectrum disorder May 7-8 at the Marriott Auburn Hills.

The subject is Residential Living and Employment for Individuals with Autism Spectrum Disorder, with Lt. Gov. Brian Calley as the keynote speaker.

Registration is $200. For information, go to www .oakland .edu /oucares .

by on Apr. 25, 2012 at 11:39 AM
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by on Apr. 25, 2012 at 11:52 AM

Awesome story!!  My son is only 14 now but soon we will be dealing with this challenge also I'm afraid :(

by Emma on Apr. 25, 2012 at 1:23 PM

i had a very strong knee-jerk reaction to reading that their doctor "told him to give up because he'd be instituionalized"

that attitude pisses me off so much and it's what happened to me as a kid. If I could reach out and bitch slap the doctor who gave them that horrible advice... how many parents with good kids listen to that bad advice? how many people are traumatized because of advice like that?

vent over.

other than that, the article was pretty good, though I don't like how the author made it sound like we were mentally defective.

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