Autism Ambassador Aaron Likens (pictured here at right with our CEO Ron Ekstrand) came to Easterseals Arkansas in January to talk about what it's like living on the spectrum. He describes it succinctly in his book, "Finding Kansas." Now, as someone on the spectrum living through the COVID-19 pandemic, Aaron shares what that is like and how others can help someone like him navigate through these unprecedented times in which we find ourselves.
Aaron Likens: “In Search Of My Routine”
Although I wasn’t diagnosed with Asperger’s Syndrome until I was 20-years old, there were signs and behaviors long before. The need for a “routine” was definitely on this list. Routine is one of the most important things in my life. It was when I was young, before anyone knew what Asperger’s was, and it is still just as vital today. When I didn’t know what the routine was – my routine – I would repeatedly ask my dad, “What’s next?” I had to know. I always had to know. Still do, to be honest, as knowing provides so much comfort.
In the past few weeks with COVID-19, there have been truly unprecedented and monumental events and changes in the lives of all Americans. For those like me on the autism spectrum, these changes cause great anxiety well beyond the anxiety everyone else is feeling. I’ll admit that there is great uncertainty for everyone, but for those on the spectrum it’s magnified by a power of 100!
Imagine being on the spectrum and needing to have everything the same as it was yesterday. Out of the blue, schools are being closed on a statewide level and a definitive return date is unknown. Students look forward to and are accustomed to spring break, and the extended summer break, but now, suddenly, there’s a major change that wasn’t predicted, nor could it have been.
The impact of COVID-19 is almost impossible to avoid and I wish I could tell you, whether you’re a parent, sibling, guardian, or just a friend of a person on the spectrum, how to comfort a person with autism. I’m 37 and I’m experiencing a level of anxiety I haven’t felt before. On one hand, I’d love for a person to utter some magic words to ease the fear, which I’m sure is true for most anyone, on the spectrum or not. On the other hand, I’m thankful that those I know haven’t attempted to do so.
You see, attempts at minimizing fears for those of us on the spectrum are likely just a one-way ticket to further anxiety and frustration. It’s hard enough for me to speak about something once. If I know or even think that speaking about my feelings or fears will draw a flippant “oh, don’t worry” let alone a harsh or critical response, I’m simply not going to say anything! I’ll swallow my fear and live with the anxiety.
Then things can go downhill from there, because there’s no outlet for my emotions, which leads to a bigger bout of anxiety, which leads to more fear, which… you see where this is going.
The worst thing of all, for me, has been the imagination which accompanies being on the spectrum. I laugh when I hear people say “people on the spectrum can’t have an imagination” although sometimes I wish that were true. While I may not have been able to pretend or enjoy imaginative play growing up, I’ve always been able to play out scenarios in my head. This can be a gift as a lot of the chapters in my book, which I speak about frequently, are associated with scenarios that became teaching lessons.
Unfortunately, when the world becomes a shaky place, the imagination makes it infinitely worse as there’s no stop to the processing of cataclysmic “what if” scenarios and I can become overwhelmed with the inability to determine “what’s next?”
What is next? I don’t have that answer and I don’t think anyone can say with any certainty. However, thinking back to my 12-year-old self, I would’ve been in an extremely bad place right now because school, my major source of stability and communication, albeit limited, would have been taken away from me. You see, even though I despised going to school, a major schedule change – a disruption to my routine – would’ve been worse.
With that said, parents or siblings, if you have someone in your household that’s on the spectrum and struggling at this time, please know that consistent, patient communication is critical and extremely helpful. While we may not give an instant response to your words of comfort, they are being listened to, even if words to the contrary are being spoken. Be prepared for repetitive questions.
I was the master of this and I would ask the same question maybe just 20 minutes (or less) apart and I was always looking for consistency in answers because if I knew my parents said the same thing multiple times then that must be the way it was going to be.
Of course, you won’t have the answers to everything… and that’s okay! No one does right now. You won’t be able to say when they’re favorite sports team will resume play, or when their classes may start again, but you can be there for them in whatever way you can when that doubt about the future and fear rolls in like a storm coming off the Rockies, and they ask you, “What’s next?”
Most importantly, I can say with 100% confidence that simply being there for them in whatever way you can is almost as good as actually knowing the full answer to the question we are all wondering….“When can I have my routine back?”
Aaron Likens is the Author of “Finding Kansas,” a nationally recognized speaker on the subject of autism awareness and serves as autism ambassador for Easterseals Arkansas.