Adults with autism in NJ: Why parents can never give up

Ocean County resident Bobbie Gallagher sometimes wonders what life would be like without two adult kids with severe autism.

Her daughter Alanna is 26 and her son Austin is 24.

“I really don't know any other way to live, but I wish I could go out to dinner with my husband without planning 12 days in advance to find other people to help me, to watch my kids, and then come home and know that everything’s OK,” she said.

Her life is full of complications. Her family, for instance, takes vacations separately "because our two children don’t care much for each other."

"And it really would be nice not to have to do that," Gallagher said.

Gallagher, who joined a special New Jersey 101.5 Autism Town Hall panel on Wednesday night, said when her kids were little, she was on a never-ending quest to find programs and services that would be a good fit.

“But now that they’re older, the problem is the quality of those services,” she said.

She said when people with autism turn 21, and enter the realm of adult services, “it’s a cliff, it’s an absolute cliff.”

It's not just about finding programs to serve adults with autism. Finding employment is difficult because of their behavioral issues.

Gallagher said her daughter Alanna, who is 26 now, had been employed as a hotel house attendant before leaving school. But she faced a changing landscape of rules and regulations when she became an adult. Her school was too far away. Transportation became an issue. She just didn't get the same support she did as a minor.

Ultimately, she lost the position.

Not having skilled support affects “everything, absolutely everything," Gallagher said.

As children with autism become adults, “the level of quality of the staff that’s providing the services to them just isn’t there, and even the level of supervision of that staff isn’t there.”

She stressed it’s very important for parents with younger children who have autisum to become educated about the types of treatment and services they have now, and what they’ll be dealing with in the future. And that means the type of training the children get, starting when they’re younger teenagers, must change, she said.

“Too often it’s what’s called 'piece work,'” she said.

"Somebody can’t just fold the pizza boxes and be done. They need to know how to make a pizza, slice the pepperoni, do the whole job," Gallagher said. "People don’t’ hire people for piece work."

And she said better opportunities and training for adults with autism won’t happen unless parents make it happen.

“I want to stop saying, and I hear this a lot around adult services, 'Well that’s how adult services are,'" she said. "Well, we can keep saying that or we can start making it different. We have to start making it different. Our parents need to get together now and start moving forward with the adult services and jobs.”

Suzanne Buchanan, another Town Hall panelist was well as the executive director of Autism New Jersey, said “unfortunately services for adults are lagging behind the services for children.”

She said after a child turns 21, there can be any number of outcomes, “from a program that meets all of the individuals needs, to parents and caregivers having a very difficult time cobbling a variety of services and support that may or may not meet all of the individuals needs.”

She said part of he problem is we know more about how to serve kids with autism than adults, “and there aren’t as many professionals who want to work with adults with autism, and so we need more training and workforce development initiatives to increase the number of professionals.”

She also said group homes are sometimes unsatisfactory because “the wages are just slightly above minimum wage oftentimes, and this is so much more than a minimum wage job.”

You can contact reporter David Matthau at David.Matthau@townsquaremedia.com

More from New Jersey 101.5: