Autism services inadequate, advocates say

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Capital News Service
LANSING—Rachel Slawkowski of Jenison just celebrated her 18th birthday, but she isn’t celebrating the social services she’ll lose when she finishes high school next May.

She is one of the many individuals with autism spectrum disorder (ADS) in Michigan with little to count on after graduation.

“Once you get to that transition after high school it is kind of like, OK have a nice life. K-12 programming that’s nice, but at 18 you have 60 more years to live and what are we supposed to do now?” her mother Lana Slawkowski said.

The number of individuals with ASD, are increasing making the issue more relevant. A recent federal study says one in 91 children are being diagnosed with ASD, compared with a previous estimate of one in 150.

The study was released by the American Academy of Pediatrics based on a survey by the Health Resources and Services Administration and the Centers for Disease Control and Prevention.

“I don’t know if it has really hit home yet with the general population. This is becoming a real epidemic,” said Bob Steinkamp, a board member with The Autism Society of Michigan who helps prepare high school graduates with ASD for the workforce.

Under Michigan law, individuals with autism can receive education services until age 26. Federal law requires services only until 21 Steinkamp said.

However, “once a person accepts their diploma, their rights to education services ends,” he said.

Many individuals in the autism spectrum are academically gifted, so they graduate but don’t have the social skills to get a job, he added.

“These kids are sitting home and doing nothing. They don’t want to sit around and do nothing,” said Lana Slawkowski.

When asked what she plans for next year her daughter tells people she is going to college, but she can’t, especially without support. She enjoys art and music, but she can’t pursue a future in this because of restrictions in programs, said her mother.

“All of a sudden they are 18 and it breaks your heart. These are young people with all this life ahead of them and there really isn’t a next stop.”

ASD is a spectrum disorder so individuals have different needs based on degrees of ability. The only program available to her daughter is an isolated program geared toward more low-functioning individuals on the spectrum, her mother said.

“The only way to be a part of the community as adults is to be a part of the community as children,” said Amy Matthews, director of the Statewide Autism Resources and Training Project at Grand Valley State University.

“A lot of programs teach independent living but they do so in a very artificial situation so students don’t know how to handle situations beyond that.”

Kathy Johnson, president of the Autism Society of Michigan, said there are many early intervention autism programs in the state to address the problem, but young adults and adults lack adequate resources.

“There is going to be a wave of kids with autism graduating from high school and we are not prepared,” said Matthews.

Such things as managing money, daily living skills and social components of work are more difficult for people with ASD, said Steincamp. He offers these “social instruction” skills in his training.

“Dating can be like rocket science to them. They don’t do it, they don’t want to make a mistake,” Steinkamp said.

State agencies like Michigan Rehabilitation Services provide job placement services, said rehabilitation consultant Cynthia Wright.

She said they help individuals with autism make connections with businesses that will best accommodate them. The agency helps individuals with interviews and works with employers to ensure a good fit, she added.

Her agency has served about 1300 clients with autism over the past three years. Many of whom still receive support and services, she said.

Lana Slawkowski said the agency’s intentions are good but it is hard because they can only give each individual so much time.

It is the same for most of the state services provided, Slawkowski added. They do their best, but “parents are better off educating themselves on services and then digging their heels in and making it work for their child, she said”

Slawkowski said she says she understands that the state has budget problems, but the money it does have could be used more effectively.

Not all individuals with ASD have the strong family support Rachel has, however. When these children graduate and enter the workforce, state services may really be tested.

Matthews said universities, community colleges and businesses need to be educated on how to be accommodating and how valuable employees with autism can be.

“The key thing,” said Lana Slawkowski, “is if you keep yourself educated and advocate for your kid, it works. I have no doubt that we can find something to keep Rachel busy, having fun and leading as normal of a life as possible.

I don’t know the details but I do know there are plenty of people who want to see her successful that will make this happen.”


© 2009, Capital News Service, Michigan State University School of Journalism. Not to be reproduced without permission.

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