While care is often focused on children, many adults struggle daily with the effects of autism. Autism spectrum disorder (ASD) is truly a spectrum and needs vary among different people. Experts from the Transition Medicine Clinic at Baylor College of Medicine discuss how to support adults with ASD.
“Fifty percent of individuals with autism spectrum disorder have some type of intellectual disability or learning disability,” said Dr. Cynthia Peacock, associate professor and chief in the Department of Medicine – Transition Medicine at Baylor.
There are different chromosomal abnormalities that can cause ASD, and in some cases the root cause is currently unidentifiable. While ASD develops during childhood, it might be misdiagnosed or undiagnosed if symptoms are mild. Some children might be categorized as “quirky” and might not be diagnosed as some families might be hesitant to accept their child has ASD, which can lead to a later diagnosis.
The support needs of adults with ASD lie on a spectrum. Some adults might not have intellectual disability, but might have adaptive needs that are sensory, such as needing bright lights or noise cancellation. These adults can have a full-functioning job and family and can perform independent tasks the general population handles daily. Other adults on the spectrum might need supportive employment like having a job coach to help deal with situations rather than being terminated for not being a good fit. A job coach might help with a conversation with a co-worker that does not go well or triggering situations in the workplace environment.
“People with autism can be very successful in a variety of workplace settings with appropriate environmental supports, coaching and time to learn how to adapt to social situations in the workplace,” said Dr. Ellen Fremion, associate professor in the Department of Medicine – Transition Medicine at Baylor.
There are adults who have more behavior challenges or intellectual disability. Challenging behaviors such as physical aggression, increased stereotypic or ritualistic behaviors and property destruction are often manifestations of internal distress, discomfort or anxiety. Challenging behaviors should be evaluated to determine the physical health, environmental, situation or mental health cause. Ongoing behavioral challenges often require medications, behavior therapies and daily routine supports.
Unfortunately, many therapy and behavioral supports drop off in early adulthood as special education programs end at 21 and insurance coverage changes. School is often a safe space for individuals to go while their families go to work. After graduation, family caregivers might be unable to work outside the home due to inadequate supports for their loved one. Without adequate therapies and care services, adults with behavioral concerns related to autism may have increased aggressive behavior toward themselves or others that can lead to parents or caregivers getting injured or need for placement in a long-term care facility, which can be a very difficult decision for families.
ASD often pairs with mental health issues like anxiety and obsessive-compulsive disorders. Evidence shows that for high-functioning young adults (or those who do not have cognitive or language difficulties), the No. 1 cause of death is suicide, which speaks to the mental health component of ASD. Peacock and Fremion often see disruptive behaviors, especially for those who are nonverbal or have significant intellectual disability when they don’t have adequate support or community participation opportunities.
“Imagine yourself going to a country where you don’t understand the language and the rules of social engagement and everything about you is foreign to the people around you too. That is what I imagine ASD feels like to some degree – they can’t ask questions or understand our nonverbal language, and that is very anxiety-provoking,” Fremion said.
Loved ones can show support to those with ASD by learning how to help them feel safe and calm.
- Know their triggers: Understand what makes them feel anxious, nervous or makes their day challenging. This is individualized and could include lights, certain noises, being in a crowd or changes in routines.
- Understand what makes them feel calm: Recognize those signs and symptoms if they get overwhelmed. Calming techniques might include compression, space to move, deep breaths, listening to music, noise cancelling headphones, dark glasses or time in a quiet room.
- Have a routine: Routines are helpful because they help with predictability. If you cannot have a routine, prepare the individual that things will go differently than planned to decrease anxiety. Watching videos or developing a social story beforehand can help individuals with ASD cope with new situations.
Vocational rehabilitation, counselling, group therapy and peer mentorship can be helpful to adults with ASD pursing work, community participation and interpersonal relationships.
“I think as we become a society of realizing that people are more different than they are alike, we’re more accepting of people that are a little bit different or neurodiverse,” Peacock said. “I think we’re getting better at it, and it needs to be celebrated.”
By Homa Shalchi