Parenting a child with ASD as a Mental Health Professional (During The Pandemic

There is a saying in the ASD community: “When you’ve met one person with Autism, you’ve met ONE person with Autism” meaning Autism Spectrum Disorder is different than other DSM-5 disorders because it can look vastly different in different people. I understand what I have to share will not apply to every child or every family living with an ASD or special needs family member, nevertheless, I am hopeful you will get something useful from this article. Please also know my son with ASD helped me with this article, and I have his permission to share everything I have written.

In my son’s case, he has difficulties with executive functioning skills, difficulties with some fine motor skills, and difficulties with social skills. His frustration tolerance is also very low. While his intellect is on par with a college student, socially, he can come across quite a few years younger than his chronological age. He has trouble modulating his voice, i.e., speaks too loudly sometimes and also may say inappropriate things.

As is in the therapy room, I had to recognize “it’s not about me, it’s about him and it’s about what works for him” rather than my pride as someone who earns an income helping other families with similar issues. In light of that, in order to help him with some of his executive functioning skills, shortly before the pandemic, we hired an amazing tutor / personal coach so he could have someone other than his parents working with him. When the pandemic hit, we lost that resource and my husband and I became more than just our son’s parents - we became his teachers, his life coaches, and much more along with being his parents all rolled into one. Additionally, he did not transition to online learning as efficiently as his neurotypical siblings or his classmates.

I must admit, even though I knew better, I fell prey to a common assumption about people with ASD, in that I thought that online learning would be “easier” for him. I thought it would be easier because he would not have to deal with the areas that challenged him, i.e., social skills. I thought online learning would perhaps be more efficient for him and less stressful. It turned out to be the opposite. For someone who has challenges picking up on facial expressions, tones of voice or “reading between the lines” , having everything online is quite challenging. Especially when the person who experiences challenges in those areas assumes everything is” fine” and keeps moving on, not realizing he is missing important information or leaves an online meeting without truly understanding what is being asked of him. Thinking he understands it, telling his parents “I’ve got it” only to find out the day before or the day something is due, he did not completely understand it and now there’s not enough time to adequately do the (assignment, paper, or task.) In-person learning obviously gives us so much more than online. One can get a “sense” from another person, which gives us pause or leads us to ask a question. We obviously lose that when we are doing life online. It is easy to slip by, and it is easy to go unnoticed as one is floundering, because if one was meeting in-person others would likely (but of course not always) pick up on the weak signals. For my son, it was easy to skate by, do the bare minimum, and suddenly, nearly a year is lost.

Parenting a child with special needs can be extra challenging. A neurotypical child grows, matures and parent transitions from siting alongside their child, helping with homework, to checking in as they do their homework, and ultimately the child will come to the parent when they are stuck or need help. Not in every case, but often, with special needs children, that parent must stay on top of that child daily never able to transition to the “let me know when you need help, ” and it can be exhausting.

Shortly after the pandemic began, I ended up feeling frustrated by my son’s challenges with learning entirely online because of that mistaken assumption that it would be easier for him. He had previously been an “A” –“B” student and was on track for a full Bright Futures Scholarship. (Bright Futures is a scholarship from the State of Florida which pays for, depending on academic achievement, tuition, and text books). His academic performance dropped precipitously with the changeover to online learning.

He had an IEP, appropriate accommodations and support staff for in-person learning at his high school, but when learning was suddenly shifted to online, those accommodations and supports were removed. For example, there was no extra time for on-line tests or on-line assignments. If a direction was unclear, he had limited ways of seeking clarification, and this resulted in many poor grades or zeros on assignments. He only had one friend at school, who was not in any of his classes, so he could not (and would not) reach out to classmates for help. We attempted to talk him through challenges however, being the parents, he acted frustrated with us. Teachers and administrators were of course dealing with the pandemic themselves, which resulted in most of our requests for assistance going unanswered. We were all struggling. It was also disappointing to see traditional senior year events canceled. My son had chosen to attend a neurotypical school as opposed to a school which specialized with ASD in part because of the extra-curricular activities available in a traditional school.

Another very challenging issue which quickly arose, and one certainly not limited to ASD children and teens, was our son’s need for his laptop computer for school, but the computer was also a source of distracting entertainment. Again, my usual problemsolving suggestions did not work in our situation. I had always advised others to “put the computer in the common areas of the house, not the bedroom” for greater monitoring. Our son had a surgical wound and claimed to feel uncomfortable sitting anywhere except his bed. My husband and I both worked in-person at our office throughout the entire pandemic. We do not have a home office, and with both of us leaving the house to work, we were not able to be home to monitor our son’s computer use. We could not turn off the internet because he and his siblings needed it for both online classes and for his homework assignments. We were in a frustrating conundrum.

With the help of a coordinator with C.A.R.D., (Center for Autism and Relates Disabilities which is a wonderful resource for ASD clients and their families) a plan was made: Our son learned how to use an on-line calendar. Then, he learned to schedule his class time and schedule his time to work on his homework. If the homework does not get finished, once it is finished, the computer gets taken away he loses his entertainment.

I have always shared with other families of an ASD child, “For a child with Autistic Spectrum Disorder, it is vital to teach that child how to advocate for himself. ” The pandemic showed me how much work still needs to be done in that area with my own child. While we as parents tried to step back and allow our son to advocate for himself, it was honestly painful seeing him chose not to do the things that would help him. We did step in here and there, and we did our best to check in with him before we did.

While ASD children and adults are often thought of as introverts or “loners” , that is not a safe assumption. People on the spectrum can be just as social as their neurotypical peers. The few friends my son had outside of high school were all quarantining and none were available to get together even outside at a park. He became incredibly isolated and lonely. None of the resources I would typically have given to my clients on the spectrum were available during the pandemic. I.e., C.A.R.D. ’s services were available but all online. No support groups were meeting in-person. No gaming groups (i.e., D & D, Dungeons and Dragons) were meeting in-person. Even practicing social skills via shopping in public was not an option due to the numbers of shoppers in stores being limited. We had also planned for him to get his first job so that he could begin to work on employment skills, and that has not been available either. He felt just as isolated and lonely as many of us have during this pandemic.

While he had been using Discord (which is a way of communicating with others online for gaming) prior to the pandemic, he significantly increased his time using it since the pandemic started. His father and I did not understand that he was making and developing new friendships that he desperately needed. Honestly, we did not handle it the best way. We did not understand how “friends” on Discord could be anywhere near as good as in-person friends and the reason for so much of his time spent on them. Note: I attended Dr. Daniel Kaufman’s workshop with the FMHCA conference in February of this year, “Treatment Guide For Video Game Disorder Issues: A Counseling Walk-Through” and he educated all of us in attendance that friends on Discord are just as important and just as real as in-person friends. Dr. Kaufman’s presentation helped me change my perspective and helped me be a better parent to my son in this area. I apologized to my son after participating in Dr. Kaufman’s workshop which he seemed to appreciate.

My son did salvage his Senior Year, he graduated high school in an outdoor graduation ceremony over the summer, and was awarded a partial Bright Futures Scholarship, for which we are thankful.

In sum, what are the take-aways? Resources that are still available, i.e., C.A.R.D., even if it is only online it is better than nothing at all. I also made time to seek out and talk with other parents who have children on the spectrum and listened to their challenges and they listened to mine. Connecting with other parents in a similar boat felt good. One parent I connected with shared resources I had not known of despite working in this area for many years. Focusing on empathizing with my son also helped reduced my feelings of frustration i.e., his father and I still refer to things from our Senior Years, but his was permanently changed and he will miss out on many of those Senior remembrances. It stinks. He may have ASD but he still knows he missed out and it just stinks. Additionally, we do the best we can and not beat ourselves up over our mistakes. We look for substitutes for the supports that we had pre-pandemic. We engage in healthy self-care (i.e., oxygen mask on the parents/caregivers first so that they in turn can help their children.) We make time to listen, and perhaps push in a bit deeper to make sure he has the opportunity to fully express himself because it can be more challenging for him to express himself. Increasing caregiver awareness, i.e. I am aware I can get caught up in my private practice or my own “stuff “that I can lose perspective, assume too much and do not always listen as well as I could. I am not my child’s counselor; however, I can carry those skills I have – empathy, active listening, patience and so on with my own child.

In case you are interested, he is taking college courses this semester and is doing well. Resources: C.A.R.D. https://www.centerforautism.com/, Bright Feats is both a paper and online special needs directory of all kinds of services for a variety of differing needs: https://www.facebook.com/BrightFeatsDirect ory/ Autism Speaks www.autismspeaks.org and Dr. Daniel Kaufman “Dr. Gameology” https://aoecounseling.com/ Bright Futures Scholarship https://www.floridastudentfinancialaidsg.org/ SAPHome/SAPHome?url=home

Written By: Laura PeddieBravo, LMHC, NCC

Laura Peddie-Bravo is a Licensed Mental Health Counselor since 2001 and a Nationally Certified Counselor since 1999. Laura has served multiple roles in The Mental Health Counselors of Central Florida, (MHCCF), which is a chapter of FMHCA. She is now FMHCA's President-Elect. Laura runs a private practice in Winter Park, FL