For the most part, when picturing the face of autism, one pictures a young child facing difficulties with communication, social interaction and daily activities. But what happens when that child grows up to become a member of the adult world?
That is the question facing Joanne Quinn and Sue Baylis. Quinn is the executive director of The Autism Project in Johnston. Baylis is the organization’s parent resource specialist. The Autism Project, which was started in 1997 by educators, professionals and family members concerned about autism in public schools, offers educational consultation services, professional and family training workshops, social groups, camps and conferences aimed at improving the education and daily lives of children. Quinn and Baylis are now faced with finding new programs and ways to support autistic adults.
According to Quinn, 500,000 Americans with autism will age out of school support systems in the next 10 years. Those living with autism have varying levels of difficulty in verbal and nonverbal communication, social interaction and leisure activities.
Quinn and Baylis said an adult support system is in place, but there is a lot of confusion about when the transition can begin and how to appropriately help individuals to live independent, adult lives.
Baylis said right now, the process is to get students into vocational programs to teach them skills for a career. These programs can occur within the school district or be contracted out.
“When they are 21 and don’t have that school support, they have vocational support,” explained Quinn.
The question is when to start, at 18 or at 21.
“There’s a lot of misinformation about it,” explained Quinn. “We are told 21 but we have heard 18 [recently]; we are looking into it.”
Quinn’s youngest son has autism and is on the verge of that transition period, and both of Baylis’ daughters have autism; one is 18 and the other will turn 18 soon.
A major concern for Quinn and Baylis is the need to pass state assessments to graduate high school. Because of the nature of autism, it is very difficult for autistics to understand a standardized test.
“One of our concerns is that their choice [of future careers] will be limited because they aren’t getting high school diplomas,” said Quinn, pointing out that many employers will just toss aside non-graduates. “You’re limiting the choice of an entire portion of the population.”
Baylis says they understand that not everyone can get their dream job, especially someone that is nonverbal.
“But you can at least be in the arena you like,” said Baylis, adding that she has heard stories about individuals with autism giving menial jobs shredding paper or sorting recyclables. “That is not OK.”
Quinn pointed out there is also an emotional component to leaving the system that nonverbal and “high-functioning” autistic individuals need to worry about.
“They’ve gone through school to get a diploma, everyday academics, academics, academics,” said Quinn. “But now they are out and have no ability to get or sustain a job,” which could lead to intense depression and anxiety problems.
“Kids were coming out of high school with no transition plan and sitting on their couches. Some still are,” said Baylis.
Social issues can be a problem, even if the adult has found a successful career. Baylis recalled one man living with autism who found success in the computer field, but he had no friends. Baylis said the young man eventually found a friend who was a heroin addict and his family could not get through to him that his only friend was dangerous.
Quinn said some adult social skills should be taught in childhood. The Autism Program has a number of social interaction groups for children and teens monitored by their support staff.
“We have to shift the way we think, we have to shift the way we do things,” said Quinn. “Social needs start at 3, not 18.”
Quinn also addressed the need for more programs and support to help adults living with autism have their own lives. Too often, Quinn and Baylis hear from parents in their 80s with middle-aged autistic children still living at home needing constant support because they cannot work.
“They deserve an independent life. Their parents deserve an independent life,” said Quinn.
Baylis said the “pendulum has swung the other way.” In the past, autistic adults were put in state institutions if they could not care for themselves. Even today if their parents die and there is no other family member willing or able to be a caregiver, Baylis isn’t sure what would happen, guessing those individuals become wards of the state.
Now, there are group homes for adults, but Baylis said those are often viewed as institutions and “they don’t have to be.”
Quinn, Baylis and other professionals in the field do not have a solution yet. Quinn said state and national plans are needed, but it all comes down to dollars and cents.
“The funding has been bad enough when they were kids; then as adults, there is none,” said Quinn.
Funding for autism continues to be low. According to Talk About Curing Autism’s (TACA) prevalence vs. private funding data, pediatric AIDS affects 1 in 300 and receives $394 million; autism affects 1 in 110 but only receives $79 million in funding. But that prevalence has grown. In March 2012, the Center for Disease Control reported 1 in 88 children had been identified with autism.
“This is life-altering for families,” said Baylis.
As time went on, the support grew. Now the same will have to happen again with adults.
“I think because it’s this huge explosion that we never expected,” said Baylis. “The schools are trying to catch up; the adult world is trying to catch up.”
Quinn heard of a recent study in South Korea that revealed 1 in 38 children were living with the disease. According to an Autism Speaks article, the study surveyed all 55,000 children in a South Korean community between the ages of 7 and 12 in the special education, disability registry and general education populations. The children underwent multiple clinic evaluations to determine a diagnosis. Quinn believes there are plans to conduct the same style of survey in South Carolina soon.
Quinn said the fight to provide more funding for autism research and support programs is still key, working with nonprofit organizations such as Autism Speaks to advocate and state government agencies such as the Office of Rehabilitation Services, which Quinn said is beginning to recognize the need to support those living with Autism, and the Rhode Island Department of Behavioral Healthcare, Developmental Disabilities and Hospitals (BHDDH) for financing.
“We need support to run our day-to-day operations,” said Quinn.
While working to come up with adult programs, Quinn hopes to continue to work with individuals on their own plans for the future.
“We need to play with the individual’s strengths,” said Quinn. Using her son as an example, Quinn said he enjoys performing magic tricks for children. He interned at a day care before, but he did not enjoy that. Quinn believes her son could continue to work at his part-time job 20 hours a week but also perform at children’s birthday parties a few times a month.
Quinn said she had heard of engineering companies in other countries specifically looking to hire autistic adults to perform product tests or work on pieces because some of them have an intense attention to detail and focus on tasks such as that.
Quinn said a model like that helps social skills because the individuals are working as a team as well.
There is also an assisted living model from the United Way in Burgin County, N.J. There are four or five autistic individuals living in their own small apartments but with group space and a support system of professionals. Quinn admits there are some problems with the model, but it is a step.
“They’re going to be adults. They are going to be running their own lives,” said Quinn. “We need them to tell us what will work.”
For more information on The Autism Project, visit www.theautismproject.org.