This is the story of how Charlie was, for lack of a better term, kicked out from ABA Therapy. I’m going to do something I rarely do and speak negatively about ABA Therapy. As usual, though, remember that my experience is only that: my experience. My negative experience isn’t a reflection of the entire field of ABA; it’s a reflection of my personal encounter with ABA. I also want to emphasize that I still have no issue with the therapy itself but rather with the business aspect of it.
ABA Therapy, 2-1, and challenging behaviors
A bit of context is needed here. This year has been incredibly challenging for Charlie and our family. Charlie deals with severe life-threatening behaviors such as pica, aggression, self-injurious behaviors, and elopement. At the worst of it, Charlie was engaging in pica every 1 minute and 30 seconds. During that time, Charlie wasn’t attending school as every one of his doctors recommended he needed at least a 1-1 to be kept safe. Instead of school, Charlie attended ABA full-time. He was approved for 40 hours of ABA therapy a week, with half of these hours being 2-1 and 15 being direct hours with a BCBA.
Fast-forward a few months. Thanks to a great advocate and tireless efforts to secure a Free Appropriate Public Education (FAPE) for Charlie, he was accepted into a school for children with severe disabilities. There, he has a full-time 1-1 RBT under the supervision of a BCBA and is in a classroom with five other children who also have severe disabilities. Though I’m happy with Charlie’s school, I still wanted Charlie to receive ABA part-time. Half days aren’t an option due to how far his school is, so I sent Charlie to school three days a week and ABA two days a week, and the results were incredible!
His ABA center decided to discharge him.
Unfortunately, his ABA center decided to discharge him because I was “going against the clinical recommendation of 40 hours a week of ABA Therapy.” I was left with a choice: ABA or school.
Charlie had been thriving at school, so I decided to give school a chance.
The center agreed to keep Charlie part-time this summer (not until I complained); his original end date was in May. Charlie’s last day of ABA will now be in August.
Why am I upset? Because the reason given for discharging Charlie doesn’t make sense. It’s not like I decided to do nothing with Charlie outside of ABA; he’s going to school with an RBT the rest of the time—a school that is working closely with our BCBA.
So now, instead of 16 hours a week of direct ABA therapy, which, according to his ABA center, is not enough, Charlie will now receive none. Make it make sense! This is obviously all about money; it always is. I’ve known about this for months, and I wasn’t going to speak about it, but it’s been eating me from inside.
To be clear, Charlie’s staff is incredible. Charlie’s BCBA has been nothing short of amazing. She’s the most involved BCBA we’ve ever had, and I couldn’t ask for a better team for Charlie.
My problem lies with the business aspect of ABA. Don’t get me started on the $19 late fees for being 5 minutes late and threats to be sent to collections over $40.
My platform is built on honesty and being raw, and this is why I’m going public with this. If we are going to make ABA better, we need to talk about the good things and the bad things.
To me, this isn’t compassionate ABA. This is ABA as a business, and while I’m thankful Charlie’s direct therapy has been nothing short of compassionate, compassion doesn’t end at direct client interaction.
Compassionate ABA should extend to the family. I always say that ABA isn’t one-size-fits-all, and that’s the case for Charlie, who had been thriving on his hybrid schedule of ABA and school.
So this is it for us. Our time with ABA is over. I’m thankful for all the skills Charlie has learned over the years and for all the people I’ve met along the way who love Charlie like their own.
I will keep advocating for better ABA for autistic children and their families.
To the people who run ABA companies, remember that the parents you serve are more than dollar signs; they’re human beings who want the best for their children.
Until next time.
8 Comments
Helen Josephson
2024-06-01 at 1:22 AMAre there any ABA providers that will work with him for less hours? Is it just your area? My son did center based ABA for 9 hours a week last summer for seven weeks. Most of the providers I have worked with will work for a minimum of 15 hours a week, but in the home setting.
Cam
2024-06-03 at 1:22 AMI think it depends on what needs to be met. My son received 10 hours of ABA a week until he finally “graduated” because he met all his goals and we had nothing really left to work on. It was more like someone coming here for 2 hours a day to babysit my son. Which is great but my son got attached to his ABA therapist she became part of our family. If my son needed more hours it would be because their were more goals needed to be met so I’m assuming they recommended a certain amount of hours because that’s how many were needed to meet those specific goals. Even though what they did was wrong and some hours are better than none im assuming that’s why he was discharged
Robert
2024-06-01 at 2:05 AMI absolutely agree!! Thanks for sharing my friend!! My son had a similar experience
Sher DeGenova
2024-06-01 at 4:59 AMWe had an excellent experience with ABA, but it was geared for an older person (my son was was 22). He was becoming agressive when he asked to do specific things and they either were not for him or were unsafe/not practical. I wanted the therapist to teach him how to accept “no” without losing his sh-t. Instead, the therapist helped him to 1) describe how he was feeling at any given time, and 2) develop new leisure skills (either things to do on his own, or things to do with others). They explored crafts, fishing, biking, painting, golfing.. There were some areas of interest he had that the therapist and other staff felt were acceptable -sharp-shooting and archery. My husband and I, knowing how impulsive when angry our son could be, completely disagreed and said NO to those. How easy it would be for him to seriously hurt or kill someone. That was difficult, b/c the therapist had already encouraged our son to try skeet shooting and hearing this from her, someone he admired, made it ok to him. We had to hold a meeting with our RBT, Support Coordinator, and the head of that agency so that we could make it clear to all that he was not going to have weapons, and that the topic should be taboo. We reminded everyone that we are his guardians. It all got settled, and he saw that tx for a year. My point is that the approach to ABA with an older person will liikely be different, as will the goals, but the outcome can be just as productive. We didn’t always see eye-to-eye with the BCBA and ABT, but the results were better than I had ever anticipated.
Hilary Cline
2024-06-01 at 7:14 AMWhile 16 hours can be effective in addressing some skill deficits and maladaptive behavior, I wonder if part of the rationale foe discharge may have also been that it wasn’t showing clinical effectiveness (enough progress to justify the service). While some progress was being made, could it be that the reduction also decrease his rate of learning and was not at a level different than what he would have learned in the general environment? Additionally, when ABA is given across so few days, it can cause increases in maladaptive behavior and some unintentional reinforcement may occur, shaping up behavior instead of reducing it. Last thought, I have seen some providers take on clients with severe behaviors and then realize that they simply can’t support the intensity of the behavior, even under 2:1 conditions. I previously worked in a clinic in which a child when into severe behavior- the clinic was not appropriately set up to safely support the severity of the behavior, equipment failed, and it resulted in several staff being hurt. This included myself and I had to get intensive speech therapy, physical therapy, and other services to treat to resulting injuries. I think providers need to have better ways to identify if they are actually prepared to support clients before taking them on. They also need to be prepared to make referrals to more appropriate providers if they can’t so families can get the help they need. I obviously don’t know the whole story and I can absolutely understand the outlook that it was strictly a business decision. I am glad for your family and Charlie that he was thriving at school. Hopefully that continues and everyone gets the support they need. Thank you for your advocacy and passion for making a difference. You are an inspiration and beacon of hope!
Eileen
2024-06-01 at 8:53 AMCharlie’s progress was the best it’s been in over a year when he was doing 2 days of ABA and 3 days of school. Data doesn’t lie. Why change something that’s working?
Exhausted by Parents
2024-06-19 at 12:56 AMGotta love when parents use their autistic kids as social media headlines. What if Charlie grows up and does not want his autistic status public? Too late, now everyone has seen photos of you.
Eileen
2024-06-20 at 1:59 AMIt will be the best day of my life if Charlie can one day navigate the internet and communicate his annoyance. Until then, I will keep advocating for better services and support for autistic children.