My son, Michael, was diagnosed with autism when he was 17 years old. For years, I had that nagging feeling that something wasn’t quite right, but I didn’t know who to go to with my concerns. Michael used to come home from school every day and draw a map of the state of Minnesota by memory. He worked for hours to include lakes, counties, and major highways.
After he proudly finished, he would take a new piece of paper and start again. He was obsessed by the Muppets and crayons, and spent hours creating bus lines on the carpeting in our living room. I fought the urge to see the pathology in what I only could describe as brilliance. Michael cycled through periods of intense interests through the years, settling on new ones and revisiting the ones he could not let go of.
In 1942, child psychiatrist, Leo Kanner wrote an article describing eleven children who lacked basic social instincts, were obsessed by objects or ideas, struggled with change, and displayed a need to have things stay the same. Kanner labeled these children as having “infantile autism”. Around the same time, Austrian pediatrician Hans Asperger described children with similar features. His patients were diverse, spanning a spectrum of abilities, difficulties in social understanding, and social awareness. Despite Asperger’s early lectures and paper, his work went unnoticed until 1981.
Today, our understanding of autism has grown significantly. According to the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), autism is classified as a neurodevelopmental disorder with an onset in the developmental period. It is characterized by deficits in personal, social, academic, or occupational functioning.
Individuals with autism display deficits in social communication and interactions and have restricted, repetitive patterns of behavior, interests or activities. They may be sensitive to sensory input and display repetitive motor movements. Autism can be diagnosed with or without intellectual disability. With early screening and intervention, the Centers for Disease Control estimates that approximately 1 in 54 children have Autism Spectrum Disorder (ASD).
Like many others with ASD, the most difficult thing for Michael was making friends. He was socially awkward and the kids at school teased him mercilessly. The teachers stood by and made excuses for the bullies. Michael was trapped in a miserable world. He became more isolated and depressed. It was at this time that I knew we had to seek help.
Michael was evaluated at a large organization known for providing quality assessments. During the intake session, the questions asked led me down a path I had not considered. Michael paced repetitively. He was sensitive to sounds and smells. He had a difficult time making eye contact during conversations. These are all things that I had realized at some point but had not put together.
After Michael’s evaluation was complete, the psychologist invited me to discuss the results. It was then that we were thrown into the world of autism and neurodiversity. Our journey with autism officially began.
We know a lot more about autism spectrum disorder since Leo Kanner and Hans Asperger first described the social deficits characteristic of the disorder. Individuals with autism often feel socially isolated. Only 58% of them work as adults, and they are significantly less likely to get married. Not surprisingly, depression and anxiety are often co-morbid conditions to autism that need to be treated independently. Additionally, Autism Spectrum Disorder increases an individuals risk of substance use disorder.
treatments, limitations
There are now several interventions designed to help individuals with autism learn social skills and cope with their emotions. Early interventions are available for children with autism, but come with their own set of controversy. Applied Behavioral Analysis (ABA) is an empirically-based approach for helping children with social behaviors.
Because ABA relies heavily on operant conditioning, it is considered controversial by some in the autistic community who consider it to be abusive. Other interventions for helping children with autism include play therapy and social skills training. Interventions for adolescents and adults include social skills training, individual counseling and life skills training. Some may also benefit from cognitive behavioral therapy.
Another treatment is called PEERS – an evidence-based group therapy program that was developed by Elizabeth Laugeson, Ph,D at UCLA. Adolescents and adults are taught social skills through a didactic instructional method, role plays, and homework assignments. IRL Social Skills offers PEERS group classes online through Zoom for participants and their caregivers.
GoZen is an online program that teaches children ages 6-15 a variety of social and emotional skills through the use of videos and worksheets. It can be used by parents or professionals. Although it is not designed specifically for individuals with autism, many of the skills taught include resilience, mindfulness, anxiety-relief, and self-compassion which are valuable assets for youth on the spectrum.
It can be difficult for individuals with autism to identify their emotions, so it is helpful to teach them awareness of the sensations that they feel in their bodies and how that relates to their feelings. Progressive muscle relaxation exercises are helpful ways to help individuals deal with anxious feelings and identify where on their body they feel anxious. Symptoms of anxiety and depression can be worked through using art therapy or utilizing a sand tray to focus on what the person is experiencing in the moment. Older children and young adults also benefit from learning about their emotions. Many of them are receptive to cognitive behavioral therapy methods to help treat depressive and anxious symptoms if they have an awareness of their emotions and thought processes.
differently abled, not disordered
There is a growing movement within the autistic community to embrace neurodiversity and stop thinking of autism as a disability. These individuals see their unique autistic characteristics as a gift and not as something to be cured. Despite this, many are eager to improve their social functioning and “get in” where they “fit in.”
Michael is 26 now. We worked hard to help him become independent by teaching him step-by-step instructions to take care of basic things in his life like cleaning his bedroom or brushing his teeth. Social stories were a great way to introduce new topics and help him solve problems in a way that was comfortable for him. Michael lives in an apartment on his own and recently graduated with his bachelor’s degree.
Although he still struggles with some social deficits, Michael is able to enjoy the close friendships he has. He is a loving, caring adult who I am proud to call my friend. He does uncanny imitations of Kermit the Frog that rival Jim Henson. Recently, I had a bad day. Michael sent me a video of himself singing “The Rainbow Connection” as Kermit. His caring response brought tears to my eyes. We have come a long way.
Thank you for this compelling, composite picture of your son, and for sharing some helpful resources. It’s so great to hear that he has been developing on his own trajectory and that he has cultivated some friendships! And the story of him sending you a video of himself singing when you were having a bad day further blows apart the autism researchers idea that autistic people lack empathy.
Really enjoyable read…and such heartfelt advocating for the neurodiverse movement. People with autism are people first. Thank you for shedding light on this topic, and for taking us one step closer to inclusivity, understanding, and acceptance of diversity in all its forms!