Sept 4, 2018 was our first day of Applied Behavioral Analysis (ABA) therapy for Bryson. This time a year ago I had interviewed by phone 3 different providers that were recommended by our insurance company, and had a clear favorite. We had met with the Clinical Supervisor (CS), Shaina, we were assigned and she completed 2 initial observation/assessment sessions. We were just waiting for the final insurance processing, to be assigned our Behavior Interventionist (BI), and we were ready to get started.
The ABA provider, Intercare Therapies, I chose to go with was especially warm and receptive to my questions when I initially called. There website was professional and showed their extensive, 40 year history, primarily in California, and that they were new to grow into Colorado. Brooke, the Denver Regional Director, was kind and thorough in explaining what is ABA, her background with a PhD in this subject, and what would be our process to get started. She listened as I described my son and my hope to help his behavior, and how our doctors had recommended ABA as our next step. She didn’t try to sell me anything, but explained the science and proven effectiveness of their strategies. They’re work was data driven and we would get regular reports to demonstrate results. We were challenged and I did need hope, and was ready to get this started.
Initially, I hadn’t been aware of the intensity or time commitment. I knew our insurance had approved 12 hour per week, so it would be daily, but I distinctly remember almost dropping the phone when I heard it would likely be at least a year. Of course, ingrained behavior modifications, even for a 5 year old, wouldn’t change over night… but a year? Intercare was committed the goal of our child’s independence, which meant they wanted to get in and get out, and would do what was needed to make that possible.
From previous therapies we had tried I had felt beholden to whatever we were assigned: if after 3 months on a waitlist I was told our therapy was Wednesday morning at 10am and where to show up, regardless of the challenges or modifications for my work or B’s school, we would do it. Did those therapies work or not? I don’t know. I was so grateful when I found out that Intercare’s ABA would be in our home, and that we had some choice in the timing. When I articulated our need for an after school time and my preference for Monday thru Thursday (let’s have Friday and weekends for a little schedule release, please?), because we were one of the first clients in Denver for this company, our request was honored. After all the go-arounds and challenges we had been through, the sacrifices I had made to accommodate school requests and support my child to the best of my ability, I needed something that could work to feel even slightly easier.
Reflecting back, ABA is anything but easy. Truly, it’s a commitment; of time, money, effort, energy. It’s showing up with a grin-and-bear-it smile everyday, navigating insurance companies, and putting your trust in the hands of strangers. In the early weeks, after the “honeymoon” had worn and my son had rapport built with his therapists, if he was not doing what he was supposed to, there was a “cry it out” consequence. We have used “cry it out” in our home well before ABA, and it is still difficult for me to be present for that. And over time I see in the data that it has worked. Brys still has difficult moments, even though he is well aware of the rewards and consequence system that is the foundation of ABA. While he has learned to work with the program, on the days he is most deregulated his instincts lead him to needing more consequences in therapy. Those are the hardest moments, and my momma heart hurts for all of us.
I’ve come to learn only recently that ABA is controversial. I’m nearly finished with an extensive history of autism (I plan to do a book review in the near future), and the development of ABA is discussed. In the mid-1970’s as ABA was first created, there was controversy over the use of “punishment” and what constituted consequence. I know from my researcher background that today an Institutional Review Board (IRB) would never approve such methods used on humans, especially with children. Consequence methods generally have evolved, and a good ABA plan is tailored per child; what constitutes rewards and consequences needs to fit each person individually. This summer as I’ve dug into autism research, I have read on some open forums parents today who are strongly against ABA. Objectively I can see that various parenting approaches might not favor “cry it out,” parents whose advocacy takes the form that “an autistic child doesn’t need to be ‘fixed,’” or there are going to be a range of delivery approaches to ABA and a therapist has to be a good fit for a family. I wasn’t aware of this controversy when we started, and I’m actually thankful for that. There’s a lot of talk about ABA, and while I had briefly researched before we started, I was just a busy working mom who needed to trust my medical experts and wanted to do whatever might work. We happened to get lucky and got in with a great provider at an ideal time. Today, I don’t see ABA as taking away anything that makes my son unique; they’re not “fixing” his autism. They are teaching him appropriate ways to be in the world, and helping him learn appropriate approaches to manage him impulses. The way I see it, I am grateful we have the label of autism for him, and these therapies will only enhance what gifts he will be able to contribute to the world.
The people that come to my home and that I have worked with over the phone are by now far from strangers. Conar, our assigned BI, has been with us from the beginning, and I understand that is rare (BI’s can move around a lot). He is an energetic early 20-something young man who finished his undergraduate degree in December, and early on he showed himself to be someone I love having in my home daily as a role model for my son. He executes Bryson’s program plans with patience and consistency. We are partners in Bryson’s therapy, and we work well together. We have recently transitioned to a new CS; there was a shuffling of cases as the company has grown and we were assigned a new woman named Leigh, as Shaina took on more cases closer to her home (this was a smooth transition and not unexpected). Leigh is clearly professional, well educated, and a fierce advocate for children’s disability rights. Her observations are sharp, and Conar seems to feel good under her direction.
We have been told to expect at least until December 2019 for our program, and given how helpful they have been over the summer when B was not in school, we have considered aiming to continue until August 2020. It is a journey to say the least. And I am still as hopeful as ever that this investment will be one of the most worthwhile decisions I make for my son’s childhood.