Change in a Changing Autism World

Greek philosopher Heraclitus said “change is the only constant in life.” This quote seems especially significant in the middle of a global pandemic. Our lives and routines as we knew them have globally changed.

People with autism spectrum disorder (ASD) characteristically thrive on routine and struggle with the unexpected. They have a different way of reacting to things. Imagine then, the difficulties you’re having with COVID cancellations and changes, then magnify them. This is what people with ASD and their families are now facing.

We are one of those families. Our son Blake is one of those people.

Blake is an amazing teenager. He is a friendly rule-follower who loves snacks, swimming, music, basketball, his computer and his phone. Although these all sound like typical teenage things, how he experiences them is anything but typical. Blake was diagnosed with autism at 21 months. He has many strengths, including an uncanny ability to remember dates, events, details about events and directions. The catch is that he only remembers those he perceives as important. He might not remember the dates for the history test, your birthday or even your name. However, he will remember exactly which foods were served at his fourth birthday party, the order of activities on a random Saturday 10 years ago or the specific brand of soap used in a friend’s downstairs guest bathroom.

Although Blake has many strengths, he likely will always need our support. He will not be able to drive, attend a typical college or live without assistance. However, thanks to thousands of hours of intervention and services, he will have a good life. He is verbal and will be mostly independent. He can read, has great math computation and computer skills and will hold a job of some kind. Life with autism has not been easy, but life with Blake has been a gift. Each milestone is a huge change, and change is harder with autism. Currently, our family is buying a new home while selling another, living with a new puppy and navigating a pandemic. All of these are big, but the headliner is that our teenager with autism turns 18 in a month. A lot of our changes revolve around him becoming an adult, and a pandemic does not stop this from happening.

Instead of doing college visits, teaching him to drive and discussing dating, we virtually completed a special needs trust and will, began working on guardianship paperwork and bought a home that will have a walkout basement apartment to allow him to live with us for many years.

Change is hard. Huge life changes during a pandemic with a child with special needs are excruciatingly hard.

When we got the call in March that we weren’t going back to school for the rest of the school year, the questions began from Blake — all through tears.

“No last day of school?”

“No Miss Zuba?”

“No Battle High School?”

Unlike our neurotypical 13-year-old, who was not so heartbroken with the additional gaming time he just acquired, Blake thrives on stability and routine. So right now, I get about 500 questions a day asking if something is still happening. It’s all just so unknown. The problem is that he doesn’t “do” unknown. Let’s be honest, this is where we all are right now, but it’s very hard on those with ASD. I tell him “yes” and “no” regarding what is cancelled and what isn’t at that moment because it’s easier on him. He seems to do better with this black-and-white description and handles the change better when it does happen.

Blake also keeps asking about “eating germs” and reminding us a million times to wash our hands so we don’t get the virus. He keeps looking at me with full-blown sadness and worry on his face. He is worried one of us will get the virus and something else in his world will disappear. He wears his mask more diligently than anyone I know, even though I know his sensory issues make this harder for him — he is that worried about the virus. I know some folks are battling “bigger” issues, but in Blake’s world, this is one of the biggest. So, as we have for the past 18 years when we wanted to yell or cry but couldn’t because he can’t handle those big emotions from us, we’re keeping our armor on. We’re smiling on the outside and hoping, for his sake, that we all stay healthy and that he can get back to the routines and activities he loves.

Although it’s hard, I’ve found some things that have helped our family during this time.

First, I am open with him about the virus, but I don’t obsess over it (in front of him anyway). We also adopted some fun routines. Blake, my other son Jackson and I take daily walks to the park down the street to shoot hoops and then walk back. We also got a puppy to help distract and give us something else to think about.

Here are some schedule tips that have worked for us that may help others.

• Add chore time at least twice a day after meals. The house gets messier with everyone home, and these are good work/life skills.
• Add a quiet time — for everyone’s mental health!
• Arrange the things your child can do somewhat independently around times you need to work from home, such as scheduled meetings.
• Include a time your child MUST go outside (even if for five minutes with an umbrella). Another quote I’ve adopted is: “If you let the weather determine your happiness, you will always be sad.”
• Take time to read together as a family.

Although COVID-19 has been challenging, being together without the hustle and bustle of the outside world has actually been one of my favorite parts. Families with autism are rarely together without a multitude of people in and out of the house and therapies or activities to attend. We have grown used to it over 16 years, but the forced change was actually refreshing in some ways. After all, although we were given fear and unknown, we were also given precious time together, the ability to see spring unfold day by day in front of our eyes, the completion of a jigsaw puzzle, new neighbor friends we hadn’t known before, more books and movies to explore, more free time to learn what we wanted to learn, a new home and a new puppy.

I challenge everyone to find what they have gained from this change. Although some may struggle with this task, most of us have gained more than we realize.

Next Steps and Useful Resources

• The Thompson Center for Autism and Neurodevelopment Disorders offers more resources for families with autism.