Pa. autism services hope to make inroads in workplace
Patrick Lah is good at his job as a janitor at the local Giant Eagle.
But he doesn't know his supervisor's name, he isn't sure how to ask for days off and, even if he wanted to be promoted, he would say he's perfectly happy with his current job.
As an adult with autism, Lah, 23, is stuck in a Catch-22. He wants to work and be involved in his community, but he's having trouble accessing social services that would provide him with behavioral counseling and job training he needs to succeed.
“I'm pretty well educated and on-the-ball and I have the ability to follow up on these things,” said Carolyn Lah, Patrick's mother and a Freeport Area High School English teacher. “You can get there, but it takes a long time and a lot of follow-up.
“I don't know how people do it who have other things on their plate and aren't as good at working the system.”
The social and communication challenges associated with autism affect all aspects of job seeking, including interviewing, creating a resume and filling out applications. That's according to the Pennsylvania Autism Needs Assessment, a 2009-10 survey of individuals and families living with autism.
The need for job training services for those on the autism spectrum has increased dramatically in the past 20 years. According to the autism survey:
• One in three adults report an unmet need for transition services after high school.
• More than two-thirds of adults are unemployed or underemployed.
• More than one in four adults reported needing, but not receiving, vocational training, career counseling or support employment.
Gov. Tom Corbett's 2013-14 budget proposal attempts to address the issue. It includes $20 million to provide services to 118 autistic adults on the Adult Autism Waiver waiting list. The money also will enable the state to provide services for more than 1,000 adults graduating from special education programs and adults in situations where their families may not be able to continue caring for them.
Many students with autism are considered special education students and can stay in high school until age 21.
“I think it's a movement forward,” said Regina Wall Cote, director of the Bureau of Autism Services, which is overseen by the state Department of Public Welfare. “For those families who haven't had services before, this is really important.”
But she admits that more needs to be done.
“There absolutely will be an exponential increase in the number of people with autism who will be impacting the system over the next seven years,” Wall Cote said. “Anytime you have the kind of people who have the aptitude and ability to offer the workforce, you want to make sure they have the kinds of services to succeed.”
It is estimated that autism affects about 30,000 children and adults in Pennsylvania. About 1 in 88 American children are diagnosed with autism each year, according to the U.S. Centers for Disease Control and Prevention.
As more of those children become adults, the nation faces what's been called a “tsunami” of autistic adults hitting the system who need services.
“With the increase in those kids, there aren't enough people to provide services, treatment, work activity,” said John McGonigle, director of the Western Region ASERT (Autism Services, Education, Resources and Training center), based at the Western Psychiatric Institute and Clinic in Pittsburgh. “It's going to be very, very difficult just because of the tsunami that's hitting us. How do you get those kids who are in transition programs ready for employment, get them ready to live?”
While resources are scarce, Pennsylvania is better equipped than many other states, experts say.
Pennsylvania's Autism Waiver, established in 2008, was the first adult-specific Medicaid waiver in the nation and the commonwealth is among just a few states that have a Bureau of Autism Services.
The waiver is a medical assistance program that provides home and community-based services designed to help adults with autism care for themselves, reach employment goals and support more involvement in community activities.
There are currently 900 people on the waiting listing to receive services through the waiver program.
‘Spoiled' in schools
Services for children with autism are much more abundant, mainly due to the fact that school districts are required to provide special education services.
Growing up in the Hampton Township School District, Patrick Lah participated in the marching band and was around kids his age for most of the day.
“You sort of get spoiled in the school system,” said Carolyn Lah.
She said it was difficult finding support services when her son first started school in a different district but, after they moved to Allegheny County and autism awareness spread, it got easier.
“We found some great stuff when he was school age and I had gotten used to the fact that he was a regular part of society,” she said. “Then he turned 18 and things got terrible.”
Now, in addition to his job, Lah stays involved in the community as a singer and pianist who performs locally with his mom. He also speaks to groups about the challenges of having autism.
But still he spends much of the day alone.
“That's not optimal,” his mom said. “Mostly I just feel like I'm not doing enough; I can't think of a way to do enough.”
Pennsylvania's three regional ASERT programs are designed to coordinate resources to improve access to services, provide information and support to families and train professionals in best practice approaches for autism spectrum disorders.
“We teach people to develop resumes, support them in getting in front of an employer for an interview and offer the employer job coaching so that somebody can get trained on the job,” McGonigle said.
He said hiring individuals with intellectual disabilities such as autism requires a different approach.
“They're talented and have special skills, but their social deficits often get them into difficulty on the job,” he said. “The new way of looking at this is looking at the person's skills, passions and abilities and selling that to an employer and working with (the employee) to make sure they really know and understand the job.”
It took about six months, but Patrick Lah is getting job coaching from AHEDD, a nonprofit that provides employment services to the disabled. It is funded through the state Office of Vocational Rehabilitation.
“When he had to start interviewing, there were 20 other people being considered for the job, and (the employer) didn't understand people with autism; that just because he talks funny doesn't mean he can't do a job,” Lah said.
She hopes that, as time passes, employers will become more open to hiring people on the spectrum.
“If they were to give him a little bit of support and have a little bit of tolerance,” she said, “I swear he can be successful.”
Jodi Weigand is a staff writer for Trib Total Media.