By Millie Alspaugh for Planet Blacksburg
Mimi Sedjat introduced herself to a young adult named Jason and wrote her name down on a piece of paper. She explained to him that she was there to meet with him because he had been hitting people at work. When Sedjat asked him why, Jason looked at her and grabbed the piece of paper where her name was written.
He wrote down “No work, I hit.”
When Sedjat asked him if he would hit because he didn’t want to work, Jason scribbled out his previous response, drew an arrow to the person across from him and wrote, ‘He no work, I hit.’
Sedjat then asked, “So when he’s not working, you hit him?” And Jason responded with a smile suggesting he thought that was an appropriate reaction.
Sedjat, of Virginia Beach, is a licensed clinical social worker or more specifically a behavioral consultant who works primarily with people with autism.
Sedjat recalled the session with Jason, which came from a referral about his behavior. She was able to implement a plan that allowed him to write down his problems for a staff member and eliminate the hitting.
The staff had been working with Jason for nearly two years but had no idea he could write.
Autism is a complex disorder but many people with autism are capable of education and employment, Sedjat said. Jason’s story shows the challenge many people with autism face after high school because society is not prepared to accommodate their needs.
“Everybody who graduates from Special Education is funneled into X amount of work slots or day support slots,” Sedjat said of the work programs for the autistic. “And they suck. I mean 100 percent suck.”
The Center for Disease Control explains that autism is part of a group of disorders called Autism Spectrum Disorders (ASDs), which includes autistic disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger’s Syndrome.
Autism is defined as a neurological disorder that affects an individual’s social and communication skills. Autism is also associated with rigid routines and repetitive behaviors.
According to the Autism Speaks website, about one in 150 people are diagnosed with autism, making it more common than pediatric cancer, diabetes and AIDS combined.
While autism awareness is continually increasing and research is being conducted to promote early intervention and treatment, there isn’t enough focus on autism care after students graduate, advocates such as Sedjat say.
Dr. Susan White, who has been involved with the Virginia Tech Autism Clinic since 2008, is currently involved in a research study about a treatment program for autistic teenagers to help decrease their anxiety and increase social skills.
“That’s why I was personally wanting to work more with the older teens and the young adults,” White said. “Because we know that there are people out there who are struggling, who have the ability…to have a better quality of life, to get jobs, to marry. They want those things and we aren’t helping them get there. So, I think that we need to make some mind shifts.”
According to the Autism Society of America website, all public schools must provide services for children with Autism Spectrum Disorders from age 3 to 21.
But what happens after that?
Sedjat explained that in theory, young adults with autism should move from school to day support. In day support, they learn the necessary skills to move on to a pre-vocational setting.
Through pre-vocational work, these young adults will develop the skills to go on to either an enclave, which is a sheltered workshop setting, or to supportive work, a small group setting that allows one staff member to shadow three to five individuals.
Unfortunately, most autistic individuals do not progress past day support because they cannot perform vocational work in a way that fits conventional standards, Sedjat said.
The problem seems to be that the programs that have been designed for disabled people after graduation from high school do not suit the specific needs of individuals with autism.
“Individuals that are on the spectrum need more support, initially. And by God, that’s going to cost money,” Sedjat said.
Due to the need for additional funding and training for staff, work sites sometimes would rather employ individuals with disabilities other than autism, Sedjat explained.
Sedjat said if you submit a referral for a job placement for an individual labeled with autism, the work site might not take it. But if you were to submit another one and change the name and put mental health diagnoses like OCD or even schizophrenia, they will take those.
So, the question remains: What will happen to these people with autism as they age out of school, if nothing is done to accommodate their specific needs?
“If nothing else then there’s the loss of human potential because we know that there are people out there who could be making more of a contribution but they aren’t because we aren’t supporting them,” said White.
Fortunately Autism Speaks, a large research and advocacy organization, recognizes the need to expand services for people with autism.
Lisa Goring, director of Family Services for Autism Speaks, said, “The Community Grant program has specifically identified Young Adult/Adult services as an area to be funded. Because there is such a tremendous need for services this is the only age-specific category that we target.”
Goring said Autism Speaks recently launched Autism in the Workplace, which is an online resource that features working adults with autism, their employers and the necessary steps to make the employment a success.
Advancing Futures for Adults with Autism, www.afaa-us.org, is another organization that seeks to enhance the quality of life for older people with autism.
More information about Autism in the Workplace can be found on the Autism Speaks website, www.autismspeaks.org.
“Society is not prepared for the number of individuals with autism who are entering adulthood,” Goring said. “Autism Speaks, in collaboration with several other organizations throughout the country, has developed Advancing Futures for Adults with Autism (AFAA).”