When my daughter was diagnosed with autism, we met with a social worker. She was also supposed to be our case manager. In a world of new information and revelations by the second, she proved to be another confusing individual who knew a lot of terminology without any knowledge about it. She mentioned discrete trials, applied behavior analysis (ABA), social skills, early intervention, transition to special preschool education and a slew of other words that are quite familiar to me now but as a physician in training who was getting her kid diagnosed for autism, none of these words meant anything at all.
Well that really didn’t matter to the people who are in charge of early intervention. In fact a parent’s cluelessness is probably a preferred and well-liked quality in this situation. Parents who know too much, or have had autism in their families, or have special needs educators in their families are not going to be agreeable clients. They’re not going to swallow big words without any distaste or questioning of them. They’re probably going to be more annoying, better activitists, stronger advocates for their kids.
We were handed over to an ABA company that doesn’t work for free if you have insurance. We had insurance and so they charged an amount for the RBT (registered behavioral technician) and a different and higher amount for the BCBA (board certified behavior analyst). We were approved for twenty hours a week, with four of those hours with the BCBA.
My daughter spent eight months in this rigorous ABA. Besides being questionable quality, the BCBA who was in charge of the RBTs (two of them) wasn’t a woman who had her heart into changing my child’s future. She was late, absent, and basically not the type of mentor that the RBTs needed.
I talked to my case manager/social worker. She told me that if I wanted to fire this agency that was up to me. She warned me that she won’t be able to find another one because the state has a dearth of agencies and I won’t be getting another ABA provider anytime soon so I shouldn’t make impulsive decisions.
This scared me. In a sea of uncertainty this was definitely not the route that I wanted to take. I wanted to do what was proved by data and available. I wanted her to get “early intervention” and I was made to feel that the quality of that intervention could be any level of mediocrity but as long as my child stuck with an agency, my autism issues are pretty much taken care of. I was told by the case manager to pray. I was told by the supervisor of the BCBA to not sound ungrateful as the BCBA was going through a divorce and it was a favor to me that she was seeing my daughter at all.
As a young immigrant mother who doesn’t know much about autism, is on a resident salary, with a husband who is still trying to make his place in the highly competitive American information technology industry, I was made to feel unnecessarily strident about something that was important. I was made to feel whiny. I was made to feel like I was not empathic enough. I was made to feel hasty. I was made to feel like I was blaming others for my daughter’s autism.
But since what anyone’s opinion of us is the least important thing in the face of autism, I reached out to the social worker again in a few weeks about ABA not working and actually my daughter becoming a loud, tantrum-throwing toddler from the gentle and happy kid that she was before ABA. I actually asked her if ABA was the right modality for my daughter. I asked my daughter’s neurologist, pediatrician and developmental pediatrician the same questions. I was given the same answer. “It has data behind it.”
Interestingly no one, really no one, no one from our case manager to our multitude of doctors who were heavily involved in my daughter’s case, mentioned Sonrise, Greenspan Floortime, Early Start Denver Model or sensory activity based play therapy.
We came to another state and had a great time getting to know a center that did Floortime based behavioral therapy. It was a huge discovery. Our daughter became verbal and we unlocked a part of her brain pathways and how they made new connections.
But then some well-wishers started to question us again. Why weren’t we doing ABA? What were we doing for meltdowns and tantrums? What was so amazing about Floortime? Why stick with one when we could do both?
This is when we signed up for ABA again. But this time, I had to learn a lesson from it. This time ABA came into my life with a purpose. This time I will finally understand why my daughter regressed on ABA while her autistic peers had thrived.
I started to notice anger and frustration. The act of doing the same activity over and over started to become monotonous and later, exasperating. She would clench her fists when she was with the RBT and she disliked the BCBA even more. I asked for a change in RBT. I was asked why. I demanded to know the RBT’s qualification. I was told she had completed the online module. I refused to work with her. I was given a deadline to give my final answer for it. I stood firm. A week later I got a new RBT who had been doing this for five years and was preparing for her BCBA.
Our new RBT changed the way ABA had so far been done with our child. She was innovative, could sense a meltdown or tantrum coming on usually and avoided the triggers, she didn’t practice the type of obsessive behaviors that can become a part of ABA therapy and was very flexible. We saw our little girl enjoying being with her therapist. We loved our therapist. Soon we were told that she was leaving. Soon the BCBA left too and handed us to another BCBA.
The old play of inexperience, online training with no people exposure, lack of accountability, lack of professionalism started again. I sat down with the new BCBA again to discuss the above. I was told that my daughter needed more rigidity due to escalating aggressive and “maladaptive” behaviors. I was asked why I was against routine and rigidity so much when that was the thing that ABA has identified works with autistics so well. I pointed out to them that feeding into the rigidity by creating a rigid schedule was not okay for my child. I pointed out that my child hated ABA. The BCBA assured me that children hate ABA. After four long tumultuous years of many RBTs, two BCBAs of extremely varying competence and understanding of autism, my child turning from a sweet, loving and compliant baby to a defiant, angry and manipulative little girl, we decided to say good bye to ABA again.
But here’s the question that I’ve asked myself many a time. Did we not have success with ABA or did we not have success with incompetence, inexperience and a less than sophisticated attitude towards autism and addressing the “behaviors” of autism? I believe our bad experience was not with ABA. The negativity of our experience is totally due to the way ABA was conducted and implemented.
Over the years I’ve heard people only raving of ABA. I’ve heard very few dissenting voices. And I’ve also seen a pattern.
Parents whose kids are on the presumed higher end of the spectrum have moderate to extremely successful experiences with ABA. Could it be that the cognitive ability of the individual receiving ABA is playing a role in the success that I have observed with some kids?
Regardless of the cognitive challenges of the child I think I have a few recommendations for the ABA agencies from a parent’s perspective that might help them have more parent satisfaction and better response from the child to this therapy without anyone having to consider many confounders while analyzing why ABA is not working.
1. The frequent switching of behavioral technicians is a very challenging aspect of this type of therapy. ABA endorses routines and schedules but if you constantly change the person who actually implements the program then you’re subjecting an autistic to constant change. This type of change is particularly hard for an autistic given interpersonal relationships are such a demanding job for autistics anyway. Is it possible for ABA companies to have a provision with insurance companies whereby if an RBT leaves, a BCBA can be hired for at least that amount of time and can get compensated accordingly? . Also, would the government regulate the constant changing of RBTs by the ABA companies? This would be the state taking an active interest in a population that needs large scale advocacy.
2. Is it fair to assume for an RBT to know the nuances of working with an autistic just because she has done an online course? We know that some techs have no exposure to children in the capacity of a teacher, let alone an autistic child. Is it possible to understand autism as a spectrum by doing a behavioral tech course and then arriving at the job? I think this could lead to a lot of stress for the tech. The stress that the child undergoes is of course the more important factor and depending on the amount of sensory and cognitive challenges that the child might have, this type of stress can even induce regression. Would it be fair to propose that RBTs are closely supervised for the length of every session until the parent and the BCBA are assured of their competence?
3. And extending point #2! Are we facing an epidemic of autism but a dearth of BCBAs? Why are the BCBA boards so hard to clear for most people? Are these boards hard to make this a coveted diploma? May be but I believe that any education which doesn’t pay hugely but comes at the expense of significant monetary and time investment in it isn’t going to have people opt for it even though they may want to do it. Also, is it fair for this exam to be so tough on paper when autism therapies are all about practical application and implementation?
4. Why isn’t parent empowerment at the heart of ABA therapy like it is with Floortime? Why are we not making a connection between a parent and a child? Why is this therapy almost obsessed with discrete trials? How are the discrete trials proving anything when they’re telling kids how to hug or kiss or cuddle? I do think that this is actually something that ABA therapists have to address sooner than later. Telling a child that they have to hug a bear four times and then making it a goal (the goal is that the child will follow a certain command accurately) isn’t teaching the child anything about appropriate and inappropriate touch. It is however normalizing a breach of physical boundary. Not all the tasks that an ABA program is implementing are just behavioral therapies. Some of them have implications at the level of ethics and our situation in society. Are we really thinking about how sometimes ABA is mindless?
5. Is ABA intuitive? No. How can we make it intuitive? I don’t believe changing the whole program is necessary but developing a human connection may help in making ABA have quicker results and lasting impressions. Treating the child like an individual who needs training and acting ourselves like a know-it-all is, in my opinion, the biggest hindrance in how ABA can’t make its mark on some kids. Also, the amount of visual schedule prompts, timers and what not add to the paraphernalia that’s unnecessary and takes away from learning. Autistics are usually smart people and they can very easily switch their focus from the task that they have to master to the timer that’s timing them. When they don’t have the timer in the real world…… well you can imagine what happens to people when they prepare for a driving test in someone’s backyard. They’re not prepared for the road.
6. And can I propose something that would help further the cause of the appropriate behavioral modality? If ABA isn’t working or is causing regression or negative behaviors then can our ABA agencies make a recommendation for an alternate behavioral modality? I don’t want to pile onto them as they’re already short in numbers with overwhelming case loads. I want us to see this from an insurance standpoint. If a BCBA makes this recommendation , is insurance more likely to honor it, as usually Floortime or Sonrise or ESDM aren’t covered by insurance?
Some reflections from a mother. For our future. We haven’t solved all of autism. Which is why I’m trying to see how we can decode a little more by doing a little more.