“You just starting your autism journey, I invite you to have a critical, analytical mind about any therapy offered to you, for me I have to unlike your page, we do not do ABA.” – a former Facebook follower of mine.
While I am sorry to have lost a follower over this subject, they touch on something I think is very important.
Many times, we base our decisions on the opinion of others without truly understanding that decision. We let others do the research and “take their word for it” without any further exploration of our own.
My aim with this series is to objectively present ABA to give you the groundwork so that you can make your own INFORMED decision to see if ABA is right for you.
So let’s get to it!
- In my first post, we broke down the technical points of ABA: what it is, what it looks like and how it works.
- In my second post, we took a close look at the opposition to ABA and what possible harm can come from it.
- In this post we will have a “critical, analytical” look at “ABA” and see if it is right for you.
What does the Medical Field say About ABA?
Features common to all ABA-based approaches are:
- the objective measurement of behavior,
- use of procedures based on scientifically established principles of behavior, and
- precise control of the environment to allow for the objective evaluation of outcomes.
To look at something “analytically,” one must put aside prejudices and observe with objectivity to find concrete evidence. Science and medicine use data-compilation and hard evidence to come to a logical conclusion.
Here are a few excerpts.
The Association for Science in Autism Treatment (ASAT) found that “…ABA is effective in increasing behaviors and teaching new skills….ABA is effective in reducing problem behavior…and also indicates that, when implemented intensively (more than 20 hours per week) and early in life (beginning prior to the age of 4 years), ABA may produce large gains in development and reductions in the need for special services.”
National Autism Center’s National Standards Report (2009) noted that behavioral interventions based on ABA were found to have an established level of evidence to support their use. Examples include behavioral packages, antecedent packages, comprehensive behavioral treatment for young children, modeling, schedules, pivotal response training, and self-management packages.”
This excerpt is from Autism Speaks.
We are finding more solid evidence, based on higher quality studies, that these early intensive behavioral interventions can be effective for young children on the autism spectrum, especially related to their cognitive and language skills,” says lead author Amy Weitlauf, a clinical psychologist with the Vanderbilt [University] Kennedy Center. (The Vanderbilt Kennedy Center is part of the Autism Speaks Autism Treatment Network.)”
Autism Speaks states that “ABA is widely recognized as a safe and effective treatment for autism”; and “Behavior analysis is a scientifically validated approach to understanding behavior and how it is affected by the environment.”
So “scientific evidence” has found that many people who underwent ABA treatment had positive developmental progress over time.
But is that the “whole story?” Was the well-being of the subject taken into account when the benchmarks of “success” were measured? Did all those gains come at the expense of emotional distress for the individual, as we have seen in my recent post?
In many cases, we cannot ask the individual.
The findings suggest that early intervention plays a key developmental role in those with autism. So most of those who are referred to ABA are parents with young children on the Autism Spectrum.
To answer this question, we need to ask parents about their children’s reaction to ABA.
What do Parents say About ABA?
Would loving parents knowingly or unknowingly “abuse” their children? One would hope the answer is “no.”
In fact, I have found that most parents who put their children through ABA have said that the therapy has been extremely beneficial to both them and their children.
You don’t need to look far in any autism parent support group to see how popular ABA has become (at least in the US) and the posts from parents are almost always overwhelmingly positive. Here are some examples from a community forum about how ABA has helped their kids:
From one parent:
ABA helped where all other therapies failed. ABA taught my child to speak, read, ask for what she wants, potty train, point, swing, walk up and down stairs. The biggest impact is it helps her learn. It’s hard to explain but it’s giving her the skills to help her in the classroom. It’s hard to list all the ways it’s helped but I highly recommend it. But it important that you pick a great ABA therapist. One that’s right for your child specifically. My therapist knew we needed an implementor that incorporated music, was high energy, fun and positive. She does not respond well to a bootcamp type of interaction. If at all possible, home therapy before or in addition to school therapy would be great.
Another parent writes:
My kids love ABA. If they don’t go they get upset. They love their therapists, play with tons of kids, have loads of fun, and have made insane amounts of progress. Do your research and find a good center, they are out there.”
Our therapists use play based ABA and for the most part they follow his lead. They take breaks where my son can run around or hop on his trampoline during his sessions. They color with crayons, they use water paints, they play with stickers and play doh. He has fun and enjoys it.
When he started ABA he couldn’t point, couldn’t sign, and his receptive and expressive speech was dramatically behind. He can how point to express wants and needs. He also uses signs for “all done” and “help.” I now know his receptive speech has increased because I can say “where is X?” And he’ll point to X. This has been a real game changer for us, as he’s finally expressing wants and needs. We’ve seen a huge reduction in behaviors like aggression and head banging (which is gone).
I credit ABA for these improvements.
What they are describing doesn’t sound like the controlling, forced-compliance abuse that was described previously as ABA. This almost seems like a completely different therapy.
And, apparently that assessment may be correct.
I have read in various forums that ABA has become so popular in the US, that many insurance companies will only cover “ABA” as an autism intervention and other alternative therapies are not covered, depending on where you live.
So some companies are offering “ABA” to get coverage for their clients, but the actual service they provide is not considered “true” ABA as has been defined. It could be any number of different therapies being packaged as “ABA.”
Bear in mind, that is what is being said in some community forums, but I could not find any actual documentation to support that.
Do Autistics Support ABA?
I think that it is important to have the input of autistic individuals who actually went through ABA to have a clear understanding of how ABA truly effects those on the Autism Spectrum.
I know that many autistics are staunchly opposed to ABA, and in my previous post, we saw some of the opposition from the autistic community. But to get a balanced viewpoint, I sought people who are “Actually Autistic” and who also would endorse or recommend ABA to see how/why it has been beneficial to them.
So I asked in several different forums if there was anyone who actually went through ABA, what their experiences were, and if they would recommend it to others.
I received ABA, and it is definitely the main reason that I am as neurologically typical as I am today. At the age of 2, I had a diagnosis of Low Functioning Autism. The Doctor said that I would never (yes, never) learn how to speak, read, write, or do anything for myself, effectively.
Yet, after 7 years of so of therapy, about 9 hours a day, 7 days a week, plus much teaching and guidance in the later years of my life, I have a diagnosis that says I DO NOT have autism, although my processing capabilities are below average. I know this is very unusual, I feel extremely lucky to have had the guidance and teaching that I had. No-one ever told me I should stop stimming entirely, but I did. No-one told me I should stop being so autistic (mainly because I didn’t know it back then), but, eventually, of my own accord, through learning and therapy, I did, and became who I am today. It’s also helped that I’ve had many social learning experiences in the last few years.”
Receiving a diagnosis that someone “no longer has autism” may not be an acceptable goal for other autistics according to ASAN, but I’m not going to marginalize the opinion of someone who happened to have a great experience.
Some with autism may even go on to have a career in the field of ABA.
Kaelynn Partlow was diagnosed with autism, ADHD, visual processing disorder and several learning disabilities when she was 10. As an adult, she enjoys a successful career as an ABA therapist working with young autistic children. Here is her take:
I work as an ABA therapist; I’m a Registered Behavior Technician. In the 4 years that I was a high school student, I learned many skills that would be a necessity for my employment. I learned the importance of eye contact and time management. I learned when certain jokes are appropriate and when they aren’t…
…There is a difference between acceptance and understanding. If you only accept something, that means you don’t desire improvement or change and that you are satisfied with the way it currently is. Understanding comes from a place of both love and knowledge. Understanding is loving the person for who they are, while knowing that they have the potential for more. There is nothing morally wrong with teaching people to communicate and take care of themselves. In fact, it’s morally wrong not to.”
Some people may not agree with her point of view, but her experience shouldn’t be overlooked because some may not agree with it. I feel it is important to give voice to her and ALL other autistic points of view.
23-year-old Alex Lowery, (who is autistic) wrote an article called “What I Liked (and Didn’t Like) About My ABA Experience.” Here is an excerpt.
I’ve made a lot of progress from when I was a child. I don’t think I would have made as much if it wasn’t for the therapy I received. The therapists taught me a lot of things. They taught me social skills and everyday living skills, like brushing my teeth and washing my hands. Those things might sound very basic, but to me they were challenges. I think the biggest and greatest thing I learned from ABA was how to control my anger. Before then, I would get very aggressive and kick and hurt others. With the therapy, I learned how to manage my anger and anxiety.”
On another site he said, “I had ABA from the age of 6/7 I did get it for 8 hours a day but it involved a lot of games and art and things I liked doing. I remember the later years best they used my interests to help me learn. One project was building a pond and getting tadpoles that grew into frogs the other was animation. I think they taught me everyday living skills like remembering and asking questions, sequencing in this way…”
Here is a little bit of Alex’s experience and his take on the ABA controversy (while reviewing BBC’s ‘Autism: Challenging Behaviours’).
Is ABA Right for You?
In the end, it all boils down to “what is right for you.” You need to do your own research. Not all therapists are “abusive.” Not all ABA you may be offered is even considered “ABA” by some.
You may have a therapist who understands exactly the needs of your child, doesn’t use any kind of aversives and let’s them dictate how they want to engage. You may have a therapist who doesn’t use “enforcers” or a “reward system.” You may actually have a “good” ABA therapist and have a FANTASTIC experience as some parents have noted.
Some would say that, if that were the case, “it simply wouldn’t be ‘ABA’ ” and maybe that is technically true. But if you were avoiding ABA based on the label alone, you would forego the possibility of a “fantastic” experience for your child simply because of what the therapy was labeled.
Some would choose to do ABA in the hopes that they find one of those “good” therapists. Others would not chance ABA out of fear of the “bad ones.”
As a parent, you must be our child’s biggest advocate. You must do what feels right for you.
A trustworthy friend of mine has a daughter who went through 12 weeks of ABA and came out with a better, clearer understanding of the expectations around her. She went from “biting and hitting” with limited communication at the beginning, to being able to communicate effectively—and as a result, the aggressive behaviors nearly vanished within 12 weeks.
She claimed it was a result of the ABA her daughter received. It could have turned out to be a bad experience, but it turned out to be great. At least for them.
And maybe her progress wasn’t a result of “ABA.” Maybe it wasn’t “real” ABA. Maybe she had a “floortime” version. Maybe it was just natural development, or just a really good therapist. But here’s the thing.
I don’t care what “label” it was. I don’t care. It was exactly what she needed at the time.
If my friend hadn’t at least tried it, she may not have seen the same success or have the tools to maintain that level of success with something different.
Could they have also had success using a different therapy? Perhaps. But who is to say that they would have had a “good” therapist using a different form of therapy?
I have heard the recommendations from psychologists. I’ve seen the scientific studies. I have heard the voice of autistics. I have heard the voice of other parents. None of that has any bearing on my decision.
Nobody else can tell me what is best for my child because nobody understands my child better than his mother and me.
So I am at least willing to try it, with the knowledge that it MAY not be the best for him. I will insist that I always be in the room with the therapist and if I see forced compliance, abuse, or any aversive techniques, then we will stop immediately.
I understand that Jonah is autistic and I am not trying to “normalize him” nor am I forcing him to do endure something harmful out of sheer ignorance. I don’t endorse abuse and I don’t endorse forced compliance, but I will always do what’s best for my son. I will always look for the best care for him, and I do not fear the letters “A.B.A.”
The only interventions we have had up to this point is preschool and Gemiini (an online speech therapy tool, which teaches imitation in a similar fashion to ABA) and we personally had tremendous success with Gemiini.
Jonah is a smart kid and I know that he will engage and respond to this style of therapy. He didn’t need “enforcers” to learn through Gemiini and I don’t believe he will need them to learn from a 1:1 ABA therapist.
I am not promoting or endorsing ABA nor am I rejecting it. When all is said and done, I am simply equipping Jonah with the tools he needs for his future by any means available to us.
It’s like going to a dance. Some people love to dance. Some people don’t. With ABA, I’m not “forcing my son to dance.” My aim with ABA (or any therapy) is not to force him to do something he doesn’t want to do. My aim is to give him a set of tools so that down the road, if someone asks him to dance, should he be so inclined, he will know how.
How to Tell if an Autism ABA Therapy Is Harmful
That being said, I am not just “throwing caution to the wind.” I am going to be wary of ANY therapy offered to us.
So after deciding we would try ABA with Jonah, I did a little bit more research and found an excellent article on seeing if our ABA therapy is harmful and I will share a little bit with you. It’s been helpful for me in evaluating our therapy and therapist. I would encourage you to read the entire wiki.
- Considering Therapy Goals
• Ask yourself whether the goals involve accommodation or assimilation.
• Consider if the therapist controls your loved one’s affect.
• Consider whether the therapist is fighting or accommodating the autistic person’s brain.
• Evaluate whether learning communication is treated as an essential skill, or a performance to please adults.
- Examining Therapy Sessions
• Consider whether the therapist presumes competence.
• Evaluate whether the therapy is a team effort, or if it is therapist against autistic person.
• Take a close look at how boundaries are treated.
• Examine the use of reinforcers.
• Consider your loved one’s ability to take a break to calm down or stim.
• Evaluate whether your loved one feels safe in therapy.
• See whether the therapist cares about the autistic person’s emotions.
• Consider how the therapist reacts if your loved one cries or gets upset.
• Watch for physical intervention.
• Be wary if your loved one appears to be regressing or becoming fearful.
• Consider whether you would be okay with a non-autistic person being treated this way.
- Examining Your Relationship with the Therapist
• Be wary of false promises.
• Notice how the therapist talks about autism and your loved one.
• Consider whether the therapist allows you to witness sessions at all.
• Ask if the therapist listens to your concerns.
• Trust your gut.
So, what now?
We have been on waiting lists for months and finally found an ABA company who is willing to work with us from our house in a 1:1 setting. I will also be present the whole time. It is not the “40-hours” a week that other people had mentioned. It is (at the most) 10 hours per week in the afternoons when Jonah is done with pre-school.
Once a week, the therapist’s supervisor will also come over to keep tabs on the everything to make sure that things are running smoothly and to answer any questions or concerns I may have.
So we are proceeding, but I am being VERY WARY.
How much we will do depends on the therapist and on Jonah.
I will also document our experience to give you an idea of what ABA is like for us each week so you can see how we are doing (progress or not). It is quite an undertaking for me, so we will see how long that lasts.
I hope you now have a better understanding of at least what ABA actually is and hopefully, this has been helpful to you in making an informed decision.
Kennedy Krieger Institute
Baby Center Community Forum
The Behavior Station
Autism on the Mighty
How to Tell if an Autism ABA Therapy is Harmful