Susan Watkins said her days were filled with anxiety because her autistic son is about to age out of the education system and will lose many of the services he had received as a child. Susan and husband Tim were looking for an adult program with no luck.
"I was in tears because I thought no one was going to take him," Susan Watkins said. "What were we going to do? I didn't want him just sitting at home all day. That can't be good for anybody."
Many families face the same situation as the Watkinses as their autistic children reach the age of 21 and can no longer attend school, where most services are offered. They are thrown abruptly into a world with little outside support. What few programs exist fill up quickly.
"It's like you come to the cliff and they say, 'OK, jump,'" said Tim Watkins, using an analogy many autistic families, advocates and scholars use to describe how people's lives suddenly change.
Nearly 20,000 children in Maryland, or 1 in 68, have some variation of the autism spectrum disorder, according to the Centers for Disease Control and Prevention. The precise number of adults is hard to come by, underscoring the fact that autism is looked at still as largely a children's disorder, with research focused mostly on dealing with the disease clinically and treating children. In recent decades, there has been a sharp increase in the number of children diagnosed with autism, and now these youngsters are growing up.
"These guys, they fall in these cracks between systems, and it is horrible for the families, who are desperate," said Paul Shattuck, an associate professor and researcher at Drexel University's Autism Institute who studies how the disorder affects people over a lifetime.
Schools encourage parents to develop transition plans as early as middle school to help prepare for an autistic child's future, but the best-laid plans often fall short. There either aren't enough programs once the child leaves school or they are too costly. There is less government funding for adults than for children's treatment.
"The plans are not adequate to meet the needs of students when they leave the education system," said Kiely Law, the research director at the Kennedy Krieger Institute's Interactive Autism Network. "You can put together a plan, and you may have the best plan possible put together, but then you can't implement it."
The way autism manifests in each patient varies widely. While some go on to hold jobs, live independently and have productive lives, others struggle to meet basic needs.
About 26 percent of young adults on the autism spectrum nationally receive no services, according to new research on the issue that Drexel University will release next week. Such services include help gaining employment, continuing their education and transitioning to a home of their own. The report also found that 60 percent of autistic young adults had at least two other mental health conditions complicating treatment needs.
A few child psychologists keep treating their clients well into adulthood, but many families end up coping on their own. They struggle to control large adults who can throw temper tantrums like a 2-year-old. When things get out of hand, they take their loved ones to emergency rooms, which may be ill-equipped to handle psychotic autistic cases or which turns them away because the condition is not severe enough to treat. Sometimes autistic adults get arrested for acting erratically in public.
"There is a lot that could be done to prevent people from needing to be hospitalized," said Dr. Eric Samstad, medical director at the Adult Autism and Developmental Disorders Center at Johns Hopkins Bayview Medical Center. "A lot of issues that come up could be managed at home with outpatient therapy and patient support."
The biggest strides in adult care have been made in the outpatient arena, in many cases because parents with autistic children have helped start programs. There are far fewer options for intensive inpatient programs.
In Maryland, Sheppard Pratt Health System is trying to meet some of that need with the opening of a neuropsychiatric unit for adults with autism, who also have bipolar disorder, schizophrenia or other mental health conditions.
The inpatient program is one of a handful around the country that will focus on stabilizing patients having severe psychiatric and behavioral problems. The privately run facility has hired 30 nurses, social workers and therapists to run the 7-bed unit, which cost $500,000 to develop and is slated to open Wednesday.
Autistic patients need psychologists and nurses trained to treat their needs, said Dr. Robert Wisner-Carlson, who leads Sheppard Pratt's Developmental Neuropsychiatry Clinic and who will run the new unit. Some autistic patients are non-verbal, so it may be harder to diagnose and treat depression or other mental illnesses.
"Because of their special needs, a generalized psychiatric unit just doesn't seem capable of treating these patients," Wisner-Carlson said. "The psychotic presentation is all colored by the autism."
While Sheppard Pratt executives expect the unit to fill immediately and treat an estimated 165 patients a year, they acknowledge that the new unit will make only a tiny dent in a huge problem.
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More research is being done to get a better handle on the issue. Drexel University researchers are trying to get a better profile of adults with autism. They are asking: How many have severe needs? How many can function with just a little help? How many can work and who can't?
The Watkinses, who are seeking legal guardianship of their son, Brian, now that he is an adult, eventually found a day facility where he can start after he graduates this spring from the Forbush School, a special education school run by Sheppard Pratt.
But they now must figure out how to get him there, because it is far from their Westminster home. They are contemplating moving. Susan is wondering if she'll have to quit her job.
"Until you are going through something like this, you don't really understand — until having a child that will need care for their rest of their lives impacts your life," Susan Watkins said. "But we will make it work, whatever we have to do."