The 3 Challenges for Parents of Adult Children With Autism

Twenty-eight-year-old Cameron has high-functioning autism. College did not work out for him after four tries, and it has been hard for him to hold a job for over six months. He feels lost and alone in his consequent depression and anxiety. He lashes out at his parents (and takes his frustrations out on them) because, deep down, he knows there is a short list of people who will love him no matter what–his mom and dad are at the top of it!

As a parent coach for people with struggling adult children, parents often consult me to better manage the demands of their adult children with autism spectrum disorder (ASD). I've heard many stories during my over 30 years as a psychologist about the immense emotional pain that adult children on the spectrum (and their parents) have to face.

Yes, there are adult children with ASD who can live productive and satisfying lives. Yet, very often, the challenges with thinking and feeling in ways that are usually not in sync with how most people experience the world around (and within) them–because they are living in a very different inner world–can be very overwhelming and stressful to adults on the spectrum.

Autism in Adult Children Is a Growing Concern

People are increasingly diagnosed with ASD. According to the Centers for Disease Control and Prevention, in 2018, one in 44 children aged eight years in the United States was identified with autism spectrum disorder (ASD). True to its name, the challenges of autism really do fall on a spectrum. This means the types of symptoms, combinations of them, and their severity ranges widely between those who are diagnosed with them. While there is diversity in the struggles of adult children with ASD, there are some pronounced relatively common struggles.

According to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), combined with my clinical observations over thirty years, the main signs of autism spectrum disorder (ASD) common in adult children include:

• Finding it hard to understand what others are thinking or feeling.
• Getting highly anxious about social situations.
• Being obsessed with a topic and obsessively talking about it.
• Finding it hard to make friends or preferring to be on their own.
• Autistic inertia, which is the notion that when people with ASD stop doing a task, they have a hard time resuming it. Further, once they have started working on a task or project, it can be really difficult to stop.
• Seeming blunt, rude, or not interested in others without meaning to.
• Finding it hard to say how they feel.
• Taking some things very literally.
• Not understanding social "rules," such as not talking over people,
• Avoiding eye contact.

All of these above challenges can be synthesized into three main challenges for adult children who are on the spectrum.

The 3 Struggles for Parents of Adult Children With Autism

1. Losing Sight of the Challenges of ASD

I have worked with many children and adult children who show strong signs of ASD, yet they (and their beleaguered parents) tend to overlook that it is at the core of the challenges related to it. This can occur for varied reasons:

• Pediatrics has specialties such as neurodevelopmental disabilities. In contrast, adult children with ASD usually don't get support services because there's no funding. Unfortunately, this means there is a lack of adult autism-related services. Compounding this dilemma is that the number of autistic people reaching adulthood will only grow.
• ASD-related struggles become the "not-so-new normal" over many years, and the parents and adult children feel worn down and burnt out from the myriad of related stressors and challenges.
• ASD had been diagnosed, but parents minimized or denied it ("We don't want to upset them by saying anything").
• The adult child denies or minimizes their ASD because they yearn to feel more neurotypical ("All I have is some ADHD").
• They were never formally diagnosed with ASD. Often I have seen situations where ASD "was suggested by someone at their school along the way," but this never led to a formal diagnosis.

2. Communicating About Necessary Tasks and Getting Them Done

Navigating the demands of the neurotypical adult world can be daunting for many adult children (and for their parents as the messengers who get "shot down"). They have a hard time achieving goals that would help them be more independent.

• Fewer than 20 percent of college students with autism had graduated or were even on track to graduate five years after high school. That number goes up to 39 percent after the students are seven years out of high school.
• According to the Social Security Administration, autistic spectrum disorders can affect a person’s ability to concentrate and hold a job. Autism is often marked by the inability to concentrate on anything outside of the autistic person’s immediate interests and activities. Jobs that require a person to keep pace or to stick with a given task for an extended period of time are generally beyond the abilities of someone with classic autism or severe autistic spectrum disorders.
• Challenges with motivation loom large for adult children on the autistic spectrum. As mentioned above, autistic inertia gets in the way of initiating tasks, resuming them when interrupted, and completing them.
• Identify whether it is, "Cannot or Choose Not." Slow down, step back and do your best to objectively ask yourself if your adult child needs to work through a specific struggle on their own or with your support. Don't just rush in and enable.

3. Challenges Regulating the Three Big Emotions: Anxiety, Sadness, and Anger

• An autistic person may find it hard to understand their own emotions and those of other people, including their frustrated parents.
• Emotions of others are interpreted by subtle messages sent by facial expression, eye contact, and body language. Adult children on the spectrum may find themselves frustrated by not tracking these emotions in others.
• Because emotions are often missed or misinterpreted by an autistic person, others may mistakenly perceive them as rude or unfeeling.

Autism Essential Reads

Recognizing and Expressing Emotions: It's Complicated

Making Sense of the Past as a Late-Diagnosed Autistic Adult

How to Help Adult Children With ASD

Given the complexity of challenges facing adult children on the spectrum, there is clearly no quick fix. What concerned, supportive parents can do, however, is to:

• Embrace the gifts that come with their adult child being neurodiverse and be tuned in to their struggles to reduce a sense of unwittingly expressing blame or shame.
• Do what you can to help your adult child on the spectrum get counseling and psychiatric care if warranted.
• Be patient and empathetic to their differences–don't be locked into seeing your child's ASD as necessarily a negative thing.
• The biggest supports for your adult with ASD stem from realizing where the boundaries are between what you can healthily do and not do to help them cope with stressors, what they need to do to accept certain challenges, and continuing to encourage them to rise above frustrations to strive to overcome/manage obstacles.