I can't tell you how often I am asked my opinion on ABA. It is honestly one of the most frequent questions that I get from other parents.
To begin-
I will say this truth-I am not an expert on ABA. I am not a therapist. I am not a doctor.
I will also say this truth-I am an expert on my child.
When deciding whether or not to pursue ABA for my son, I had to mold the two truths stated above. I had to dive deep into research done by experts on ABA, other parents, and people with personal experience on the topic AND THEN apply what I learned to what I already know about my son.
My ultimate conclusion: I do not have a polarizing opinion on the matter regarding the use of aba with all autistic people.
I know, bummer, right? You wanted something more concrete!
I will not go as far as to say ABA is harmful, and I am also not willing to say that it is always the best avenue for treating children with autism. I know this feels too wide open. I know you want a definite answer. I can't give you that.
What I would like to do, instead, is provide real-life viewpoints and opinions from people who have extensive experience with ABA. Some of these opinions will come from parents of children with autism, some will come from autistic self-advocates, and some will come from doctors/therapists who treat autism.
We all know that it's true that each of our children are very different individuals. They each need to follow their own path. They each are surrounded by different circumstances. I can't decide what is right for every child on the spectrum. What I can do is provide you with resources to help you make your own informed decision.
TAKE A DIVE. Listen to these opinions and apply your expertise on your child and decide what YOU think is best for him or her. Don't stop here! There are a ton of articles, videos, books, and even people in your own community that you can refer to as a way to research and make an informed decision for you and your family.
CAMP HELPUL
1. Dr. Mary Barbera, who is a parent of a son with severe autism, as well as a board certified doctor and behaviorist, shares the myths and truths of ABA from her perspective.
In the second video, she discusses why ABA is so controversial with an Autistic BCBA. Armando Bernal is a self-advocate, who is diagnosed with autism. He is now a BCBA and supports the practice of ABA.
This article is written from the perspective of clinical experts in the field of ABA. They both support the use of ABA as a practice but also say that "parents need to keep a close eye on programs, clinicians and children’s development."
Clinical Experts: Catherine Lord, PhD , Tameika Meadows, M.Ed.
VS.
CAMP HARMFUL
1. Paige Layle is #actuallyautistic & an Autism Self-Advocate! Her mission is:
"Let's smash autism stereotypes and help autistics everywhere understand themselves better."
The beginning of this video focuses on the issue of electric shock therapy- this video references this method being used at ONE institution in the United States. I did not share that part of the video. I really don't think it is fair to put that idea out there to taint all ABA centers. I decided to share the portion of the video that is solely based on what ABA is and the reasons she finds it's common practices harmful. If you are interested, you can view the video in it's entirety on her page.
Kaylene George is an autistic self-advocate, author, and mother of five, including one autistic child. She is not a proponent of ABA and outlines her viewpoints in the article above, as well as several other posts in her blog.
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NOW......I know many of you are thinking, "Well, did Anna pursue ABA as a parent of an autistic child or not?"
I am an open book and honest about our journey-so here goes.
We did not pursue ABA therapy for Andrew.
We definitely considered this therapy for our son. I was not automatically against ABA(and to be honest, in some situations, I still am not against it-SEE! I don't have a definitive opinion for every child and every situation). However, after research, discussion with our other providers at the time, and parental intuition, we ultimately decided that this type of intervention was not a good fit for Andrew. Below, I will elaborate on the three main reasons that we decided not to pursue ABA for our son. Again, this was OUR situation for OUR son. Everything stated below will not be true for another child and his or her situation.
IT IS INTENSIVE
When seeking information about this therapy, we were basically told, "Listen lady, it's 40 hours a week or nothing." I was told that any amount of time less than that was not effective and would basically, for lack of a better phrase, "be a waste of our time." (I do not think this is indicative of all provider's viewpoints of ABA, but for the providers we were in contact with, this is what we were told). I simply could not see putting my son in a therapy that encompassed as much time as an adult's full time job. I wanted him to have time to be involved in other activities. I wanted him to pursue his interests. In our opinion, we felt that the lifeskills he would learn from being on a tball team or participating in group swimming lessons would outweigh the benefits of this therapy for 40 hours a week.
MANY PROVIDERS WE FOUND WERE NOT PROPERLY EDUCATED OR TRAINED
There are amazing providers of ABA. If you are lucky, you can come across wonderful companies, with well trained employees, who implement ABA in a positive way. However, this is often not the case. ABA is highly sought after and providers are hard to find. Therefore, you cannot always trust that people have taken the time to be properly trained and ready for such a demanding and difficult position. In order to fill the demand of ABA therapists, there are many companies that only require a high-school degree( or equivalent) and a ABA certification course. Some companies actually only require employees to be "seeking" ABA certification. These providers would always be supervised by someone who holds a degree in child psychology or a related field, but that supervisor is not with them for the majority of their actual sessions. I also felt that if we solely pursued ABA, we would not be able to pursue other therapies, such as PT, 0T, or speech due to time constraints or being told these goals are already being worked on in ABA. Speech therapists, occupational therapists, and physical therapists undergo very intense and specific training surrounding their expertise and practice. They spend YEARS(like similar to the amount of years that a medical doctor spends) becoming educated on their craft. It is not okay for someone without this level of education(even someone with a masters or doctorate degree in a similar area) to claim to "cover" these skills under the umbrella of ABA therapy. I was just not comfortable with that possible aspect of pursuing this therapy.
I SEE THE ADVANTAGE IN NOT "NORMALIZING" MANY OF MY SON'S BEHAVIORS
(Andrew loves to imitate the Statue of Liberty when taking photos. I honestly don't know why, but if it makes him feel confident then I say, "Hold that torch high, my boy!")
This is often the most contested and controversial opinion surrounding ABA. I am in no way saying that if a parent pursues ABA that they are trying to "change" their child. (Do you see how often I feel the need to defend or explain myself on this topic?-it is heated and highly controversial-phew!) There are many aspects of the teachings in this therapy that stress teaching a child to behave in a way that is acceptable to society or to mask their true feelings or intended actions. While I understand the idea behind this thinking, I just can't fully get behind it. For example, I refuse to make my son look someone directly in the eye when he is speaking to them. It makes him so incredibly uncomfortable. He is not being his authentic self if he is being forced to do this. He is being his "forced, rote-answering, therapized self." We do emphasize the importance of him acknowledging someone speaking to him and help him to find ways that he is comfortable interacting with them. For him, he has decided that he is comfortable looking at someone's forehead or turning his body towards the person in recognition of his attention. I also refuse to encourage the teaching of masking or camouflaging his individuality. We celebrate his differences and what makes him unique. Honestly, some of the aspects of him that ABA may seek to change are my absolute favorite parts of his personality. His passion for subjects and his innate need to pursue any and all outlets to learn more, or his raw, real communication of his feelings and the way he "tells it like it is."-why would I want to change those things?- I actually wish more people were that way. Can you imagine if Abraham Lincoln, Albert Einstein, or Wolfgang Amadeus Mozart(all who were considered on the autism spectrum) had suppressed the pursuance of their passions? I also truly believe that the teaching of masking can have long term negative effects on some autistic individuals.
A few important thoughts to ponder:
-Many adult autistic people have recently begun sharing very negative, PTSD inducing thoughts on ABA and their memories and feelings surrounding it. Their feelings are absolutely not without merit, and I fully support them. However, ABA has come a long way since it's origins. ABA has benefited many children living with ASD by helping them learn developmental skills. Many therapists have found a way to take aspects of ABA therapy and make it progressive and neurodivergent affirming.
-ABA is one of the only therapies offered to many families. It is often the only therapy that is covered by insurance companies due to that "gold standard" label it has been given. Recently, the American Medical Association has begun to support other "evidence based" therapies, such as occupational therapy. They did not do this to denounce the use of ABA therapy, but to encourage insurance companies and similar organizations to recognize other therapies as effective avenues to help autistic individuals live their best lives.
-It is NEVER ok to shame or bully another parent about their choice to pursue ABA for THEIR CHILD. You have no idea what that parent's situation is. You have no idea who their providers are and the education they have. You have no idea what their insurance/financial situation is. If they ask for your opinion, share it. If they don't, it really isn't your place. We are all entitled to pursue what we feel is best for our own children.
-I am here to support you in your journey NO MATTER WHAT! You are your child's parent. You have the right to pursue or not pursue any avenue of therapy for your child.
All my love and support, Anna