As a parent to a child with autism, there was always a steady background hum of ABA talk. Applied Behavioral Therapy was the hot and sometimes controversial topic. The “did he have ABA?” questions would seep into conversations. And the “why didn’t you” and the “maybe he still can” best intention coffee chats chimed in. ABA was the hard-to-reach and much sought after therapy we always thought Jake needed. The expert behavioral type of coaching we felt unequipped to provide. 

At the same time through continual research, word of mouth, and disjointed, often subjective advice, we stopped short of follow through. Time passed by, quietly flowing into years. ABA therapy started to feel less and less important. We were too stuck in survival mode. There were hard facts to memorize in what services would best support Jake. I kept the thick folders, accordion files, and important contacts saved on drives. I knew our insurance failed to cover what was not formally tested. This reality made the hard to make decisions somewhat easy. The testing was thousands of dollars, coupled with unbearably long waitlists. We were already waiting for the autism waiver. ABA became a priority we had to put on hold for another day. 

When we finally did obtain the autism waiver…we signed Jake up for testing. The expert advice we could now follow. It was a relief that the tests were covered with insurance that would not be questioned. We could finally do this right for the help Jake needed. The years of waiting would be worth it. Ever so carefully, we stepped forward. Without hesitation, we submitted his test results to ABA and added his name to all the waiting lists.   

Even while we were deep in the process of obtaining ABA therapy, I carried questions. As I dug deeper into the history and evolution of ABA, especially how it intersects with autism. I found myself overwhelmed by the firsthand accounts of trauma shared by autistic individuals. At the time, we were working virtually with a behavioral therapist during the height of the pandemic. She consistently urged us to pursue in-home ABA for Jake. And yet, the more I learned, the more conflicted I became. I read how ABA often prioritizes compliance over autonomy, and how it strives for conformity over acceptance. The tension between expert recommendations and the lived experiences of the autism community left me questioning everything.  

As an autism parent, you’re constantly navigating a maze of conflicting advice and high-stakes decisions. It’s easy to fall into the mindset of “we might as well try” or “it can’t hurt,” especially when you’re desperate for support and experts are urging you in a certain direction. But the truth is…some choices can hurt. They can affect the most delicate parts of our children: their trust, their sense of self, their autonomy. We learned that the hard way through our experience with ABA. And yet, when I look back, I also see what Jake gained. It’s never black and white. That’s what makes this journey so dynamic, and why parents deserve space for both reflection and grace 

As autism parents, we search for these black-and-white answers…but so often, the answers live in shades of grey. Waitlists, nonrefundable deposits, referrals, and red tape turn into headaches and sleepless nights. The ground beneath us feels unsteady. We find ourselves walking roads that don’t feel right, silencing our gut in favor of what the professionals insist is best. But what is right for one child may be deeply wrong for another. Autism is multifaceted. What works beautifully for some can be damaging for others. The most valuable tool we have is not blind trust…but an open mind. Because true understanding is everything.  

When we first connected with a recommended ABA company for Jake, I felt hopeful. Their empathetic approach focused on starting slow and building authentic connections. This was the first step in ABA, and one that made perfect sense. We were ready to dive in. We filled out more extensive assessments and met our BCBA and RBT. The BCBA manages the behavioral plan and supervises the RBT, and in theory, this is the perfect duo for success. To get Jake’s buy-in we called these two people “coaches” He understood that going to school was a struggle for him. “Kids who are not in school have coaches” this was something that made him feel included. He latched on to this explanation. And as our coaches were leaving, he would say “there goes my coach, off to see another kid who is not in school”  

The “coaching” worked well at first and during the pairing stage. The first ABA stage was about connection, trust, and preferred activities. It was about co-regulation and building genuine connections. It was about everything that mattered and what was authentic.  

Our first RBT (coach) had an inherently calm presence. She carried a creative, artsy, almost hippie-like energy that made her easy to be around. Jake would color beside her while playing his carefully chosen playlists on her phone. She brought bags full of coloring books, and together they made tie-dye shirts on the porch and painted little rocks to leave beneath trees. She asked questions like, “What color do I remind you of?”…questions without right or wrong answers, ones that encouraged self-expression and individuality. She was a breath of fresh air…exactly what Jake needed at the time. But before long, and due to a sudden relocation of her ABA company, she was gone. It was the start of summer. There was no time to be discouraged. A new company would soon step in, and services would restart. That was the mindset we chose to hold onto.  

By the start of September, we had a new ABA company in place. The plan was to make a seamless transition. A new BCBA and RBT team got to know Jake. The first ABA stage officially began. This time Jake’s RBT (coach) was younger. Just a few years older than Jake. He called her a “junior” and they had a great connection as well. They made music videos, played games, and took walks. Building an authentic connection was the most important base once again. Jake was gaining more independence as well…recycling chores and making his own chicken nuggets.  

School was starting, and we were still waiting for IEP meeting dates. I believed that having a big team would be better. I was wrong. I hoped ABA and the school could work together—that they could align in support of Jake. That was the plan I encouraged. But it was too much, too soon. The foundation was shaky before it even began, built on a system that lacked flexibility. I made the mistake of overlapping Jake’s return to school with the restart of ABA. Trying to merge a personalized, empathetic therapy model with a rigid, standardized school transition plan was a mismatch from the start. One was created with Jake’s needs at the center; the other barely acknowledged them. 

Soon, the pressure of the school schedule began pulling ABA apart. Schedules shifted, sessions changed, and consistency unraveled. At the same time, the school’s plan collapsed at lightning speed. Jake wanted to stay home with his ABA coach—his safe, trusted person. But the school refused to allow ABA through their doors. We tried to explain why it mattered, why it could help. But the resistance only made the transition harder. There was no real bridge between school and therapy. The so-called collaboration was filled with barriers. We sat in meeting after meeting, watching our best efforts get brushed aside. It felt like we were pressing the gas and the brake at the same time—completely flooded, maxed out. And Jake? He was in full collapse. Dysregulation had taken hold. The team I had hoped would support him was fractured. It stopped being about Jake. 

We had to make a move. We paused ABA and focused solely on school. We followed every suggestion, even trying to make home less enjoyable for Jake, as the school advised. We followed their black-and-white rules. But the stress built quickly—too much, too fast. Jake began to regress, and we saw the signs immediately. The one-sided meetings, the rigid IEPs, the refusal to bend—it was all too much. We were breaking under the weight of it. 

 We eased up on the school pressure. We were lost backtracking, trying to figure out our next steps. Eventually, we brought ABA back. But by then, the unpredictable schedules and constant shifts had taken their toll. Our original staff had moved on to more stable roles. 

Jake had to adjust to a new RBT (coach). She brought with her a wide range of experience, and we stood up from the rubble, ready to make the best of it. She was upbeat and animated. Fun in a way that connected with Jake. She brought decorations for his Crocs, and they played custom game show games on her computer, modeled after the ones he loved on TV. She helped Jake strengthen his writing skills, encouraging him to write about sports and all the things he was passionate about. Her positive energy lifted him up again. She was authentic. ABA was back…and this time, it felt more aligned. The program was personalized, thoughtful, and centered around Jake’s interests. It was what he needed. 

ABA was building momentum…enough that we let go of the pressure to make schoolwork. There would be time to fold school back in. For now, life skills, well-being, movement, and fresh air felt more important. Far more crucial than the cookie-cutter transition plans that only pushed Jake backwards. I was determined not to let school interfere with the success we were seeing in ABA. 

But then, reality set in, again. Just as we found some stability, just as the ground beneath us began to feel solid, our new RBT (coach) had to shift to part-time. Her graduate program conflicted, and she had no choice but to prioritize her studies. Our plan had been to slowly bring on a second RBT to support the transition. It was supposed to be a step forward for Jake. We were prepared to make the best of it. But unpredictability is woven into the fabric of autism parenting. The schedule changes, the imbalance, they threw everything off. And Jake refused ABA, abruptly and fiercely. 

His behaviors escalated. We couldn’t bring in new staff quickly enough. The coach he once adored became someone he no longer wanted to see. She tried. We all tried—twisting ourselves inside out to make it work. But Jake was done. A hard stop. He had bowed out with everything he had. 

We heard from the ABA company a few times after that: 
“We’re still looking for staff.” 
“You mentioned PDA-autism—are low-demand approaches still your goal?” 
“How does ABA fit in now?” 
“And once Jake turns 18, we no longer serve adults.” 

Each message was a new letdown that hit deep in my gut. 

And then—silence. 

No ABA. No school. We were on our own. 
I picked up the laminated schedule and tried to be the coach myself. We gave it one last try, hoping to pull Jake up from his state of refusal. But we’d been in reverse long enough to know the signs. To know the risk of pressing the gas and the brake at the same time. We had to back off. We had to slow down. Eventually, ABA faded away. 

What’s right for some can be deeply wrong for others. 

I can’t stress this enough—especially when it comes to school, ABA, and the autism journey. 

Trust your gut. 

Jump in when it feels right. 
Step back when it doesn’t. 
Pause. 
Rest. 
Love. 
Start again.