Adults with Autism Spectrum Disorders face challenges finding the help they need

By Lauren Morgan

On an unusually warm afternoon in February, college students head into an empty gym filled with bright round basketballs and hula-hoops hanging motionless on tiny hooks. The room feels calm and a small breeze makes its way through the two opened doors leading to the halls of the elementary school. The silence breaks as some of the students begin bouncing balls.

In the mix of moving feet and bouncing basketballs, voices begin to emerge as the college students greet parents and children participating in a weekly special-needs sporting program. Participants are partnered with college students and disperse like a flock of butterflies, all heading to different corners of the gym. The first boy to pair with his partner appears to be 10 years old. He has a serious, focused look on his face as he bounces his ball swiftly across the room. He looks determined and pays little attention to the smiling college student following close behind him like a shadow.

Another boy around the same age enters the echoing gymnasium with a timid smile. His feet remain in the same spot on the court as if glued to the floor. He continues shooting as his partner throws the ball back to him. The smile on the young boy’s face stretches like elastic as his companion praises him for making his third shot in a row. His responses to questions are very short and quiet.

While most of the children stay silent as they focus on playing, one child screams sporadically. He has an unsettled look on his face but continues to shoot the basketball. Close to the screaming boy is a teenager wearing noise canceling headphones. The loud screams of the young child seem to irritate him as his smile falls into a frown. While he puts his hands to his head, his mother rushes to him. “The sounds bother him. He needs to go over there,” she warmly explains to a college student as she points to a different corner of the gym.

Beyond the soft swishing nets and squeaking shoes, there comes the sound of an abrupt pounding. The young screaming boy has abandoned his basketball and is on the floor, smacking the wood with his small hands. He slaps the students that come to stop him, moving his arms swiftly, as if swatting at a swarm of bees. The pounding comes to a halt as his father picks him up and carries him into the hall. Rocking back and forth like a boat on water, the father sways on the floor with his son in his lap. His tender arms cover the child’s head like a bear protecting its cub. The boy’s screaming drowns in the waves of his father’s comforting rocking. They soon get back up and walk to the gymnasium, where three college students are waiting with the basketball the young boy left behind.

His screams remain constant, like an alarm going off every 15 seconds, but the upset look on his face seems to vanish as he focuses on shooting his basketball. Suddenly, his head turns to his father, who is sitting alert on his cold metal chair. His mouth opens slightly but instead of a screech, he releases the word, “Dad!” as he runs to his father, still holding the orange ball tightly against his chest. He sits in his dad’s lap as the father brushes his hands through his son’s silky hair. The gurgles of water rise all around the room as the players gulp from plastic bottles and walk back to their parents. The room feels heavy and moist with sweat and chatting people. Before the once-upset boy leaves with his father, he goes up to every person in the room and gives them a hug. The students he had been slapping and screaming at only moments before are now being embraced by the young child. He gathers all his things together and leaves, holding his father’s hand tightly in his own.

What will life be like for this screaming boy in the future? Will people accept his behavior? How will he find a job? Who will comfort him when his father is no longer around? These are the kind of questions people may ask when a child with autism begins to make the transition to adulthood.

Autism Spectrum Disorder, also known as ASD, is a group of developmental disorders that can cause mild to severe problems with communication, social interaction, and patterns of behavior and interest. According to Amie Senland and Ann Higgins-D’Alessandro in a 2016 article from the journal of Autism and Developmental Disorders, one in 68 children has Autism Spectrum Disorder. ASD has grown more prevalent in the U.S. as a result of people becoming more aware of the disorder, and because diagnosis has become broader.

In recent years, there have been greater efforts to help those diagnosed with autism. Because the severity of the condition varies for each individual, there are different ways to accommodate, involve and teach children.

Playing basketball, for example, might help children feel more involved and active, despite speech and language barriers. While there are many programs helping children with ASD, there is still a group that receives less attention: adults. Although autism is prevalent in adults, there is limited research on outcomes after childhood. The lack of adult research creates issues with understanding the long-term developmental impact ASD programs have.

According to Iliana Magiati, Xiang Wei Tay and Patricia Howlin in a 2014 article published by the Clinical Psychological Review, there is little research on mental and social interventions for adults with autism and “generally, services for adults with ASD have been found to be costly, scarce and/or inadequate.”

With this difficulty in understanding and providing proper support and services for adults, the families of those with autism struggle to help them. As adolescents make the transition to adulthood, families face new challenges.

In a 2003 article in the journal of Autism and Developmental Disorders, Marsha Seltzer and a team of researchers explain that there are six areas of parental concern that usually begin developing during transitioning: behavior, communication, family-related concerns, education, independence and whether there will be future services.

Stephanie Lemut, a behavior support specialist at Nisonger Adult Behavior Support Services, described the worries her clients have expressed when she is working to improve their behaviors during transitioning to adulthood. For example, one of her clients is worried he will not be able to live on his own once high school ends.

“He has expressed concern about being a drain on the system once he is out in the adult world and does not want to move out of his home since he feels that he will still need his parents to financially support him,” Lemut said in an interview.

Families and individuals are concerned with areas that are unique only to adults such as, finding a job to pay for their own necessities, or being able to live in their own home and become more independent. Without resources to guide adults with autism, family concerns may turn into a reality as individuals fall behind during the stages of becoming an adult. This is why specific programs and services are important to continue throughout life.

Senland and Higgins-D’Alessandro, in their 2016 article, say people with autism are given fewer resources as they age:

“After high school, young adults with ASD lose access to many, if not all of, the support services previously received through the school system, at a time when they also experience a slowing of improvement in ASD symptoms.”

Life is not likely to get easier for people with autism as they get older, and it can become harder when resources and programs disappear. Adults can also experience difficulty in development when they are faced with new challenges such as independent living and employment. Because people on the autism spectrum often have trouble coping with changes in routines, as adults they can have difficulty when faced with new challenges, like finding a way to make their own income.

People with autism are not as capable as most at adapting to new life changes.

“Over 50 percent of adults with ASD are dependent on their families or state or private institutions for support in employment, education and living arrangements,” Senland and Higgins-D’Alessandro explain in their 2016 article.

Some high schools offer transitional programs into their curriculum to prepare students for an independent lifestyle, but they are not always affective. Nicole Yambor, an intervention specialist at JFK Academy in Cleveland, has noticed the difficulty high school programs have in preparing students for the workplace.

“We ask all over the community to find employers that will hire the students, but most only start them as volunteers instead of paid positions,” Yambor explained in an interview.

Researchers emphasize the importance of creating a solid transition plan to strengthen skills and increase independence. Professionals can collect and analyze data to understand the personal perspective of an adult with ASD and determine a plan for them to use when transitioning.

Creating plans to help people enter the workforce requires an understanding of how the information should be presented and what information the researcher intends to get from the evaluation. For example, in a 2016 article in the journal of Autism and Developmental Disorders, Mary McCollum, Patti LaVesser and Christine Berg suggested that presenting words paired with photographs can be an effective approach when asking questions of adults with ASD because it is preferred over words or images alone.

When creating a plan for a transitioning person with autism, researchers must consider all aspects of the adult’s life. Detailed information about the person’s lifestyle and perspective is needed to create a plan specifically tailored to their needs. One type of assessment tool that can capture the necessary information is the Adolescent and Young Adult Activity Card Sort, or AYA-ACS.

McCollum, LaVesser and Berg described the AYA-ACS as a tool that works by “directly asking the individual about participation in daily life tasks as well as asking about the personal and environmental barriers that might interfere with desired participation.” When others understand the barriers that hinder adults with autism from participating and developing in society, they can include measures in the plan to overcome obstacles.

Professionals may have a hard time using the AYA-ACS to assess people that are low functioning and nonverbal. It is important for other forms to be available, such as observational assessment.

“One of my clients is completely nonverbal, other than a few words he will echo when provided with a prompt to do. So I will conduct interviews with family and staff to determine what areas we should target, and I will observe the individual across all settings,” Lemut explains. While transition planning can help to organize and prepare individuals with autism, other programs are necessary to successfully execute the plan.

Adult day programs are services that work with adults to improve life and vocational skills. Because participants are placed in group settings, they learn to improve their interactions and communication with others. Despite the benefits adults receive through these programs, many have difficulty finding the services.

“Sometimes the issue is finding a program that’s a good fit for someone, especially if they have aggressive behaviors. Some days programs are full, so people have to go on waiting lists, and other times, it is difficult to figure out funding for services,” Lemut explains. While there is little research regarding health and clinical services for adults with ASD, the federal government has introduced legislation to fund research.

For instance, in a 2016 article in the journal Neuropsychiatric Treatment and Disease, Clodagh Murphy and a team of researchers cited The Combating Autism Act of 2006/2011 and the Autism Collaboration, Accountability, Research, Education, and Support Act of 2014, saying they “aim to provide federal funding of $3 billion for autism research, services and training by 2019.” Much of this funding could go towards day programs and job opportunities for adults with autism to give them better chances at independence and fuller participation in society.

If communities were to provide better funding and understanding of necessary resources, adults with autism would be able to thrive during transition and no longer worry quite so much about what might happen to them after high school graduation.

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