Many people with autism spectrum disorder (ASD) face hardships such as difficulty communicating with others, expressing emotions, and filtering out distractions. There are also significant barriers in education and in the workplace for those with ASD. However, in addition to the challenges, there is also greater awareness of ASD needs and increasing advocacy for their inclusion in society.
A bit about autism
Autism spectrum disorder (ASD) is a developmental disorder that includes autism, Asperger’s syndrome, and pervasive developmental disorder not otherwise specified. According to Mayo Clinic, Autism is four times more common in boys than in girls. The exact cause of ASD is unknown. Autism spectrum disorder is linked to a genetic disorder in some. However, environmental factors such as air pollutants or pregnancy complications may also play a role. There are currently no reliable studies demonstrating that vaccines cause ASD.
Symptoms of ASD typically arise within a child’s first two years, although a diagnosis can happen at any age. ASD encompasses varying levels of functioning and a range of symptoms. For example, one person with ASD may require constant attention and have lower intelligence, while another might function well independently and be highly intellectual. In the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), ASD symptoms fall under communication and patterns of behavior. Communication challenges can include difficulty making eye contact or challenges in reading body language and facial expressions. Patterns of behavior can consist of sensitivity to light or sound or becoming disturbed when one’s routine changes.
ASD symptoms can lead to social isolation and challenges at school or work. However, ASD can also be associated with positive qualities like keen attention to detail, good memory, and strong auditory and visual skills.
ASD at school and at work
In 1975, Congress enacted the Education for All Handicapped Children Act, later renamed the Individuals with Disabilities Education Act (IDEA). This law mandated that all states provide “free appropriate public education” to all students with disabilities. Public schools provide an Individualized Education Program (IEP) to each student receiving special education services. This legal document addresses the student’s needs, their plan for support, and an evaluation process.
Individualized education is imperative for students with ASD because symptoms and needs vary greatly. Dr. John Wright, Professor of Education at Western Kentucky University, states, “It is important to understand that there isn’t a checklist of things that every student with ASD will struggle with.”
While IDEA and its revised regulations have made strides for people with ASD and other disabilities, barriers in education and employment still exist. Dr. Wright says that educators often make assumptions about students with ASD, ignoring key differences in their social skills and cognitive abilities. He also says that due to the high demands of special education teachers, there is very little collaborative planning in schools about working with kids with varying disabilities.
People with ASD also experience workplace barriers. Research has demonstrated that employer expectations such as filling out applications, communicating clearly, and working in a hyper-stimulating environment can present immense challenges to individuals with ASD. Some studies suggest that only one-third of people with ASD have employment in the U.S.
While there are still significant barriers for people with ASD, Dr. Wright has noticed some positive changes, including greater classroom inclusion and advocacy among people with ASD.
He notes, “There is still a long way to go, but having the voice of individuals with disabilities, including students, is important.”
Sarah Nour is a freelance writer in Moorhead, Minnesota. Nour, now in her 30s, was diagnosed with ASD only a few months ago. However, she says she suspected her disorder for over a year. Nour decided to get an official diagnosis so that she could better advocate for herself at work. In addition to writing, she works in a warehouse, where the bright lights and loud machinery overwhelmed her. She sometimes hid in the bathroom to escape the constant stimulation. Nour was worried that without a diagnosis, her employer would not be accomodating. She recalls, “I thought, what if there comes a day when I need breaks more frequently? How do I explain that to my supervisor?”
Instead of seeing her ASD diagnosis as an obstacle, Nour feels empowered by it. She understands herself better. “For years and years, I’ve wondered, ‘What the hell is wrong with me? Why does everyone hate me? Why can’t I function as others can?” Nour wrote in an email. She adds, “I learned there was nothing wrong with me. My brain is just wired differently, and that makes it beautiful and unique.”
Nour now knows how to better accommodate her individual needs without feeling guilty about it. To lessen light and sound stimulation, she wears sunglasses and earbuds. At work, she takes breaks when she needs to. Having the power to make these decisions has helped Nour come to a place of self-acceptance and confidence.
“When I’m trying to write and can’t concentrate, I don’t get as frustrated,” Nour says. “Before, I might have thought, ‘I can’t concentrate because I’m lazy and incompetent.’ Now I’m more likely to think, ‘I can’t concentrate because I feel overstimulated’ and go do something else until I’m in the right headspace.”
Artists with ASD
Recreational activities can bring numerous benefits to people with autism spectrum disorder. Activities can help foster new interests, develop friendships, and improve mental and physical health. Participating in social activities also allows people with ASD to exercise agency while receiving support. Dr. John Wright states, “There is plenty of research that outlines that education, life skills, social skills, and leisure activities all make up a robust set of essential experiences from which young adults with ASD can choose. For these young people, continued support in these domains often makes it possible to live independently and have meaningful work.”
One organization offering a creative outlet for people with ASD is A+ Art Club. Laura Goodwin founded A+ in 2010. She was working as an educational assistant at a high school in Northfield, MN. Goodwin noticed there were few knowledgeable special ed teachers and even fewer extracurricular activities for students with ASD. She started a girls’ autism group to help her students develop friendships and get involved in the community.
The club soon evolved into a co-ed art club that met every Tuesday at the Northfield Arts Guild. Laura brought in guest artists to lead projects and collaborated with student volunteers from St. Olaf College.
A+ Art Club went virtual during the COVID-19 pandemic. Goodwin now facilitates the group from her home in Belfast, Maine, with two other facilitators. While they are now using the videoconferencing platform Zoom, the format has not changed much. Meetings begin with a greeting and a team builder before moving into a group art project. Members then take a snack break and finish with a critique and closing activity. Goodwin mails the art materials to families prior to each session. She says most A+ participants have been members since the beginning.
Self-advocacy through art
Lisa Cohn, art therapist and co-facilitator of A+, explains that art can help people with ASD exercise their brains and have enriching experiences. She says, “The ability to feel comfortable using art materials and being creative just opens up a whole new world . . .”
A+ Art Club also teaches life skills. Goodwin says the facilitators focus on key phrases that help motivate club members through the projects. They emphasize “being outside your comfort zone” to remind club members that trying new things leads to growth. They also focus on “practice,” using repetition to gain proficiency.
“The thing Laura does really beautifully is she talks people into it,” Cohn says. “She gently brings the art to them and then lets them go with that. It’s constantly amazing to see the abilities they have.”
One of Goodwin’s goals with the A+ Art Club was to encourage members to advocate for themselves, accomplishing things they may not have seen as possible. She notes, “I think the program just gave them the ability to step forward as individuals first rather than their disability.”
A community of advocates
In addition to creative skills, A+ fosters community between people with ASD, their families, and their advocates.
Dr. Judy Kutulas is a recently retired History professor at St. Olaf College. Her son has been involved with A+ since its founding. Dr. Kutulas says A+ Art Club creates a sense of belonging for participants, especially when they interact with peers who do not have ASD. She recalls in-person A+ sessions when St. Olaf volunteers chatted with club members about Harry Potter – a rare time when no one was thinking about disability. She says, “. . . it was a moment when I think they could feel like they were normal somehow, that they were like everyone else and that was really satisfying.”
A sense of community is essential, not only for inclusion but also for advocacy. After Sarah Nour received her ASD diagnosis, she looked for an online community of “neurodivergent” folks, which Nour says encompasses people with mental disabilities, learning disabilities, and mental illness. She says it has been helpful for her to finally be a part of a group of people who can empathize with her and provide support. Her online community has helped her answer questions about her disability and taught her how to manage her symptoms. She says of her neurodivergent community, “They’re all my people. We’re all trying to navigate a world that wasn’t built for us. We deserve so much better.”
A+ Art Club is currently open to new members. Interested participants can contact Laura Goodwin at email@example.com.