At least 40% of autistic individuals are also diagnosed with anxiety, making it the number one co-occurring mental health concern. As parents and family members gain a greater understanding of autism, they often realize the importance of understanding anxiety as well to find effective ways to support their autistic family member.
“My kid is super, super, super anxious and always has been,” said Lynne Mitchell, a longtime AANE parent who is extremely familiar with anxiety and autism. Even though Lynne’s son Jason was not formally diagnosed until age seven, Lynne knew he was on the spectrum at age five. “In kindergarten, he did okay. His teacher really got it. His teacher made tons of sensory accommodations for him as just a matter of course. The first grade teacher… not so much.”
Lynne recalls that Jason’s anxiety in first grade was so severe, it would result in physical symptoms. “This teacher said, ‘Oh, he’ll get used to being in school,’ but he was throwing up every day, and he wasn’t sick. One of the things that I think parents should know is that anxiety doesn’t always look like ‘scared.’ I think that was super important for me to know personally and also professionally.”
Lynne is also a clinical social worker and worked with children and teens who would have met the criteria of the Asperger’s diagnosis since the mid-1990s, which is now understood as part of the autism spectrum. Working with these autistic individuals and having an autistic son gave Lynne a deep understanding of the different ways a person may express the anxiety they feel.
“For Jason, anxiety frequently looks like an increase in rigidity and a decrease in flexibility and more need for his routines,” Lynne explained. “When he’s more anxious, things have to stay the way they’re ‘supposed’ to be.”
But Lynne recognizes that this shift in her son’s tolerance level is due to what it takes out of him to manage his anxiety. “If you think about it, we all have a certain amount of bandwidth – a certain amount of energy,” Lynne explained. “When Jason is anxious, maybe 50% of his bandwidth is being used on coping with his anxiety without throwing up or shutting down. Then he’s only got 50% left to deal with the humans around him, to deal with small talk, to deal with a change in the schedule etc. Whereas if his anxiety is only taking up 25% of his bandwidth, which I think is his living baseline and more anxiety than I can even imagine, now he’s got 75% to deal with all of that life stuff.”
Building Skills In Spite of Anxiety
Early on, Lynne and her family saw that doing anything new heightened Jason’s anxiety. One of the techniques they developed was breaking down any new activity into smaller steps with support. For example, when Jason was young and wanted to walk to the corner store by himself for a candy bar like his siblings, his parents created a plan to build the skill step-by-step. “We did this thing on a schedule where it was predictable,” Lynne recalled. “A number of times, his dad walked to the corner store with him, his dad would buy the candy bar, and they would walk home. And then they would walk to the store together, and his dad would be right next to him, but Jason would hand the clerk the candy bar and receive the change. And then his father would stand outside the store and he would have to go in and buy it alone.”
By creating this scaffold for the activity and giving Jason the opportunity to practice one part before moving to the next, he was able to become comfortable with the entire process over time, which kept the anxiety from overwhelming him. They used this technique throughout his life to help Jason learn skills like eating in his favorite restaurants and learning to drive.
What Helped and What Didn’t
Lynne also believes talking openly about autism with the whole family and discussing everyone’s support needs served them well. Whether it was his sibling who needed extra help with reading or Jason needing help with writing from a parent, explanations and conversations were common. Lynne remarked, “It saved him. It saved his siblings. And it saved the relationship they had with each other.”
There are things, however, Lynne might have done differently. Lynne thinks back to Jason’s high school years, and recognizes that she put her own anxiety before his wishes at times. “I was always terrified that he’d be bullied,” Lynne remembers. “He’s very kind and thoughtful and empathetic, so I always thought ‘Oh my God – He’s got the word “victim” tattooed on his forehead!’ So it was a big thing for me for him to eat lunch with others. So he was paired up with someone, and they would eat lunch together. It was someone else on the spectrum. That way they wouldn’t be alone and that would give them a buffer from bullying.”
But finally, in Jason’s junior year of high school, he confronted his mom about the arrangement. The person he was paired with had completely different interests from him and Jason really wanted to use his lunch period differently. “He said, ‘Mom, you gotta stop. I can’t take it. School is so much – I need to just sit by myself and think during lunch. You gotta set me free.’ So we set him free,” said Lynne.
While Lynne hopes the skills he learned might be useful if he ever needs them, the experience helped her realize she needed to step back, be mindful of what he needed, and honor his choices more.
Sharing Stories to Further Understanding
Now that Jason is older, he is better able to articulate when he is feeling anxious, but this doesn’t mean that anxiety has stopped being a significant factor for him. Accepting that it may always be a part of his life creates a mixture of emotions for him and his family, and giving space for those emotions is important to Lynne. “He is one of the most amazing people I have ever met, and he lives his life so anxious all of the time…. And it’s so not fair,” Lynne said. “I love him so much. He’s my guy.”
One of the ways that Lynne and Jason have found to deal with the emotions they experience from managing anxiety everyday is to share their stories with others. The more people learn about what anxiety looks like for someone who is autistic, the greater the understanding, acceptance, and accommodation there will be. Both Lynne and Jason give presentations at schools and other organizations. “He’s really proud of his public speaking, “ Lynne said. “He’s helping all of these people ‘get it’ better, because he knows that his life will be better if more people ‘get it’.”