Monday, January 25, 2010

Lack of facilities, programs will hurt adults with autism in Pennsylvania

From WTAE-TV in Pittsburgh, Pa.:

PITTSBURGH -- Channel 4 Action News concludes its week-long series on autism by looking at the lack of adult facilities.

The shortage includes everything from daycare to a permanent residence for adults with autism.

"For young kids, there are a lot of treatments and interventions. For adults, it becomes limited," said UPMC's Dr. John McGonigle.

Jeanne Akbay told Wright that her son, who is 6 feet, 2 inches and 254 pounds, is becoming increasingly difficult for the single mother with health problems to care for.

Akbay said she tried to find a facility nearby so she could still see him everyday, but the only location currently available is two hours away.

"No one out there wants to think about it, especially with all the younger children with autism right now and the parents dealing with it, but my advice is to really take care and start looking as soon as you can at the options we have," said Akbay, who admits she worries about her son's future. "I didn't do it because I felt my son will be with me forever until I die and that's it. You don't want to believe that all of a sudden that you have a young man and he's 6 feet, 2 inches, and hear I am."

Akbay is not alone in her fears. Mark and Barbara Wallace worry about their 17-year-old son, Matthew (pictured).

"It's terrifying to be truthful," said Mark Wallace.

The Wallaces have too realized not many adult services exist for autistic patients who require constant care.

"It's constant, it never stops. I am almost, like, a mother who has a child who is just learning to walk -- a baby. That hyper vigilance, that's me. I feel that all the time. I try to balance it. It takes its toll on you," said Barbara Wallace.

More than half of those diagnosed with autism -- 54 percent -- are in elementary school.

The types of services available to those with autism will vary. Some will be able to get jobs, but wills struggle to keep them.

"I think the public keeps themselves at a relative distance from these individuals because they just have difficulty interacting with them because of the social impairments these individuals have," said UPMC's Shaun Eack.

But understanding the social impairments of autistic individuals has improved greatly within the past decade, especially in the classroom.

"I think that we're doing a better job now than we were 10 years ago. I think that regular education teachers are more used to having kids with Asperger's syndrome in the classroom. Ten years ago, teachers would say, 'Oh my goodness. What am I supposed to do with a child with Asperger's?' Now, they say, "Oh sure.' It's not that big of a deal," said UPMC's Ben Handen.

While students are getting help, adults still remain a different story.

"There are not enough places. I'm not a residential treatment facility basher. What I'm saying is this -- there are going to be millions of children throughout the United States with autism diagnosed with other disabilities. What are we going to do with them? Where are we going? What about the quality of care for the children?'" said Akbay.