Next steps after my child’s autism diagnosis

When I learned that my son was autistic, the first sentence I heard was “Get him signed up for ABA.” I was told it was a behavioral intervention and that if I did it, my life would become better. Of course we immediately enrolled in an ABA program. Our home life was being ruled by meltdowns. It seemed like nothing was going to ever change, so I gratefully jumped at the first option that crossed my path. We were prescribed 20 hours a week of ABA, some of it at home, and some of it at the center, and we got straight to it. (Well, let’s ignore the six months we spent on a waitlist, because that’s for another blog.)

Our experience with in-home and in-center ABA

On Tuesdays and Thursdays, a nice young person would come to the house with a tablet and a white board and go about with the therapy. This meant they played games, transitioned from one thing to the next, and navigated meltdowns. Most of it happened without me being present. I would get a five minute debrief at the end of each session and a monthly thirty minute meeting with the supervisor to teach me ABA. For my son it was a mixed bag — sometimes there was screaming and throwing, sometimes there was laughing, and sometimes it was barely there in a way that seemed indistinguishable from our day to day life.  

I wasn’t part of the therapy in any meaningful way, so every month I met with the supervisor. They said the same thing over and over: “Reinforce the positive behavior with a reward, and ignore the challenging behavior.” Six months into the therapy cycle I found myself routinely praising him for doing what I wanted him to do, and ignoring him when he was being disruptive. So what was the problem? Well, I started to feel like I was a dog trainer because I gave out treats (tokens), but I had not learned anything more about who he is as a person or why he does the things he does, and that hurt my heart. Yes, I cared a lot about the actual behavior (I still do!) but I cared just as much about understanding why he is so upset and frustrated that he felt like the only option was to throw chairs. 

Why I chose an alternative to traditional in-home and center-based ABA

I started asking lots of questions, talking to moms, and hitting up Dr. Google; and I found that there were in fact options, and it wasn’t just one available therapy. To help me choose, I made a list of what I wanted from therapy:

  • Understand my son more as a person and to know what was going on in his inner world. 
  • Keep working on challenging behavior so he could suffer less.
  • Learn how to do the therapy myself so that I wasn’t always dependent on a provider.
  • Be a partner with my son, not a trainer.

I explored what evidence-based interventions were out there. When I learned about different options like Naturalistic Developmental Behavioral Interventions (NDBI), cognitive behavior therapy, Acceptance and Commitment Therapy (ACT), and Collaborative and Proactive Solutions, I knew these were the approaches to therapy I wanted. These frameworks checked all my boxes and allowed me to become a better parent instead of being on the sideline. They also taught me to understand my child’s world. Instead of thinking, “I have no idea why he freaked out,” I learned how to understand why he was deregulating — not just how to fix it. This in turn brought me closer to my son.

I felt a little guilty about not having come to this decision earlier, but then I thought, “You just don’t know what you don’t know,” and I offered myself more grace. Acceptance and Commitment Therapy also helped me build self-compassion in moments of guilt and self-doubt. It helped me ensure I was behaving in ways aligned with my values, even when it was hard. Currently, we are in a good space. Not perfect (obviously), but better than before. When meltdowns happen I feel like I have options and I understand how to move forward with compassion for myself and my son. 

This was the right path for my family, and this is our story. There is no single right approach for everyone. At Avela Health, the entire approach to intervention is built around this philosophy. Instead of being one size fits all, it is one size fits one. The clinicians build a tailored care plan from a variety of evidence-based interventions, informed by the needs of each individual. Every family’s needs are different, which means that options and understanding are incredibly important.