more perspectives on Applied Behavior Analysis (ABA) – Autism

moreperspectivesonABA In my post My Thoughts on Applied Behavior Analysis (ABA), I said I would share more opinions on ABA from professionals, a very successful mother of an Autistic boy, and adults on the spectrum. So here’s the follow-up post I promised, albeit late because of a sickness that I can’t seem to overcome. In that post I shared that I had a gut feeling about ABA. I didn’t want my son in thirty to forty hours of therapy per week. I was very uncomfortable with someone forcing him to do therapies where I knew he would be pushed to his extremes and would cry and scream for hours. (You can also refer to the post Does Your Child Like Their Therapist, it was written for the parents of an adopted or foster child, but there are many key elements an Autism parent can take away.) I wasn’t okay with therapists who wouldn’t allow me to sit in on their sessions with my son either. Nor was I okay with my son sitting across the table from a therapist, repeating the same tasks hundreds of times . Mainly because he wouldn’t be able to maintain that type of intense focus.

I knew in my heart what I felt,

but there was always this external pressure because it seemed that all other Autism parents loved ABA. But, information began pouring in that pointed to the contrary. There were others who held the same opinions my husband and I did (yes, thankfully he felt the same way). Maybe traditional ABA wasn’t the best way. First came our in-home Developmental Specialist, Lia*, who’s been working with our son, Jeremiah, for two-and-a-half years. Lia’s not fond of ABA in the traditional sense, but will modify it drastically to fit the child, situation, and family. (You can read about one of the solutions she created for us in the first link in this post.) She was the first one who made me feel like we were going in the right direction. By the way, the specific conversation of ABA didn’t come up until about six months ago. I had formed my own ideas long before her and I discussed it. Second came Michael Emmons*, who we are so fortunate to have been put in contact with. He is a Professor of Special Education at a University, has over thirty years of experience in special education, and specializes in inclusive education, positive behavioral support, language, literacy, and communication. Emmons has observed Jeremiah on a few occasions, and we recently had the opportunity to sit down with him and chat.

One of my questions for Emmons was, “What do you think of ABA therapy?”

From the moment he began speaking, I knew we were riding the same wave. Know the feeling? Emmons said he’s seen children harmed by ABA. I knew my son had lost skills because of ABA, but children had been harmed? I sat in awe, listening to Emmons and his knowledge on the subject. Then he expounded. He once went into a situation where a girl on the spectrum had put three therapists in the hospital. Emmons was brought in and he stopped the ABA, he had her learning through her environment. Within a couple weeks, she was smiling, happy, and talking. Sadly, after Emmons left, the therapists went back to doing ABA with this young girl. After talking with Emmons, my spirit was buoyed. I was so grateful to know my opinions on ABA were validated, none the less by a professional who’d been engrained with ABA in school. focusonthepositivethingsyourchilddoes Then I came across an interview Steve Paikin from The Agenda did with Kristine Barnett. Kristine’s son, Jacob, has Autism. He’s fifteen-years-old, in college, and poised to become a future Nobel Prize winner for his work in Theoretical Physics (I wasn’t even sure I knew how to spell the word “theoretical,” let alone study it!). But that’s not the most important point of Jacob and Kristine’s story. When Jacob was two, Kristine was told he would probably never speak due to his severe Autism. Jacob was going through the traditional therapies for Autism, and Kristine noticed how all the neurotypical kids she worked with were having fun, but Jacob wasn’t.

She says, “It seems like all we were doing was focusing on what Jacob couldn’t do.”

When Jacob turned three, his teacher/therapist told Kristine to give up any hope of him ever communicating. At that point, Kristine decided to disregard traditional therapies and focus on what Jacob could do. Here is her interview with Steve Paikin on The Agenda: https://www.youtube.com/watch?v=Gxan95vKOrE Kristine has also written The Spark: A Mother’s Story of Nurturing, Genius, and Autism. Before I continue, I would love for you to read No You Don’t by Sparrow Rose Jones. It’s about how making a child comply (the goal of many ABA therapies) can create major problems, especially when that child is nonverbal. Remember that I didn’t search for any of these opinions on ABA, they all fell in my lap. If we want to look to prove just about anything, all we have to do is look hard enough, search long enough. In the midst of those three confirmations came statements from adults on the spectrum about ABA. One man had the opinion that ABA is why so many people with Autism develop Obsessive Compulsive Disorder. So, in the planning of this post I asked, “What are your thoughts on ABA?” in a social media group consisting of adults on the spectrum, professionals, and parents of people on the spectrum. The responses blew my mind. I came to the deep realization that us parents of kids on the spectrum really need to listen to those who’ve gone before our children (and I don’t just mean Temple Grandin). I’m only listing a small handful of the great insight that was shared by those who want to bring awareness and acceptance about Autism to the world.

ABA is like anything else…how it is executed goes a long way in whether it is successful.” – Rick Spencer

“I wish ABAs got more training in sensory issues.” – A. Creigh Farinas

ABA is nothing more than child abuse. If these same techniques were used against a normal child, all HELL would be raised.” (Referring to ABA in it’s true, pure form.) – Jeff Sexton (Autistic)

“As a teacher, I have been horrified by things that were done to children in my classrooms in the name of ABA. It came across as incredibly disrespectful of the human being in question.” – Joanie Calem

“I think the fact that the ABA community and the autistic adult community don’t tend to talk to each other is a HUGE part of the problem.” – A. Creigh Farinas

“The ideals taught are to teach a child to communicate the NORMAL way, to express themselves the NORMAL way, to function the NORMAL way…Typical children conform…ASD children adapt.” – Nancy Getty (Autistic)

“There is also a high price that autistic children can pay when ABA is practiced in such a way that compliance itself is a goal – abuse, physical/sexual/emotional.” – Patricia Gabe (She’s the one who referred to the post above by Sparrow Jones.)

“Applying therapies and asking someone to conform to a standard in a one size fits all attitude can strip a person of their natural strengths.” – Nancy Getty

Sparrow Rose Jones, and Autistic adult says about ABA, “What looks like progress is happening at the expense of the child’s sense of self, comfort, feelings of safety, ability to love who they are, stress levels, and more. The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering.”

********

Emma’s Hope Book adds a great perspective on ABA therapy as well. Another post that is worth considering: Would You Accept This Behavior Toward a Non-Autistic Child? *Names have been changed to protect privacy. *My opinions above refer to “traditional” ABA therapy. I believe ABA can be drastically modified to help individuals on the spectrum. You can view my links to read more about those conclusions.


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9 responses to “more perspectives on Applied Behavior Analysis (ABA) – Autism

  1. Steven Johnson

    What an unfortunate, narrow, and misinformed post. And Kathleen P. Levinstein does nothing but spread misinformation and lies about a legitimate scientific approach endorsed by both the Surgeon General and the CDC. Please inform yourselves. Perhaps you should talk to my many clients who have graduated from college and now leave normal lives in no small part thanks to ABA.

    • I’m sorry you see it this way. I’m not sure if you read the post, as it gives evidence of a child putting three professionals in the hospital because of ABA therapy, when that therapy stopped she was happy and talking (which she didn’t do during the ABA).
      I believe ABA can be beneficial in an EXTREMELY modified form. By this I mean focusing on what the child is seeking (if self-arming or climbing on something) and alleviates anxiety for them, not simply training something out of or into them.
      I’m able to speak about ABA and it’s consequences because of what’s happened to my son as a result of ABA therapy. My son should not have to ask for each gold fish, cracker, or drink he wants at snack time when non of the other typical children have to ask for anything. They are given snack and consume what and how much they like – never required to request anything. People who have autism shouldn’t be trained to make eye contact (and especially for any length of time) when it’s literally painful for them, just ask an autistic adult what it feels like.
      I’ve also heard the opposite of what you have, there are many autistic adults who say that ABA harmed them and was torturous for them.
      I have spoken with another professor of Special Education who says that, yes, ABA teaches skills, but those skills are often not transferrable to real life.
      I also think many autistics would be offended by your comment that your clients have gone on to “live normal lives.” Who determines what normal is?
      You can also read more about my experience with ABA here.

    • Or the children and adults who have been injured- Please see
      Brown, F Michaels, C ,Olivia A Christopher M and Wolfe S, (2008) “Personal Paradigm Shifts Among ABA and PBS Experts. As I am an Autistic myself, ( I wonder if Mr. Johnson is as well?). Does he care what Autistics have to say on this issue? . Has he ever had to undergo ABA as I have? I may be better prepared to speak on this issue . As well, has he authorized care for Autistics at the nation’s largest insurer as I have ..??? Lastly, is he aware that ABA was originally used to cure gayness prior to it being used against Autistics so that we can be made to look “indistingushable from our peers?”. If you do not care what Autistics and ABA survivors have to say – this is your choice- but why are you trying to silence us from speaking? Lastly, whose “normal life” are you speaking of. ??? Maybe you should ask Autistics if we want to be “normal? Rather than speaking for us, you could try to listen. Isn’t this akin to white people telling black people about their experience or men telling women about female experience.? How can you tell us we have not bee disrespected and tortured??? What are you so afraid of>> Do you make money off of the torture of Autistics? I have never mentioned the surgeon general in my research, so if you are going to attack me at least please read my work.

      • Steven Johnson

        I would say that the parents have a large write to determine what a “normal life” is for their child. I would say that severe self injurious behavior, social isolation, and barriers to rich emotional relationships with their parents are not often endorsed by parents as constituting a “normal life.” Perhaps you should spend as much energy speaking to the plethora of individials with autism who testify to how ABA improved their lives as you do searching for the opposite. Surely these people with success stories have as much right to speak on this issue as you do?

      • To some extent parents do have get to determine what “normal” is, but some aren’t able to see the greatness their children possess. In a way, I was one of them.
        As to the injurious behaviors and two other things you mentioned, I would say it all depends in how those goals are obtained, I’ve shared my opinion on this already. You know, interestingly the only autistics I’ve heard speak about autism are those who are unhappy with it and disagree in the most part with the practice. (I would agree that those who disagree with something do speak louder than someone who is happy with their experience.)
        And, yes, those with success stories are allowed to speak on this issue. Interestingly those who’ve made comments here in support of ABA have done so with inappropriate language and have attacked personhood, so their responses are not approved. Intelligent conversation is always welcome.
        I hope in the end you hear that I think ABA is okay in an extremely modified form.

      • I believe right is spelled like this Mr. Johnson (R-I-G-H-T,, not W-R-I-T-E). I am also the parent of 3 Autistic children (at least I was) ,… one died in an ABA related injury on April 1, 2014. He was never self injurious until ABA. There is a body of literature on Autistics BECOMING injurious due to ABA. Feel free to contact your local ASAN. for more information. I am being bombarded with hate mail form BCBA’s and parents that feel that they have a right to torture their own children in order to make them “normal” as does Mr. Johnson. I am no longer going to respond as I am busy caring for my 2 living Autistic children, earning a living as an Autistic (not easy- let me tell you with a wolrd full of arrogant neurotypicals) and continuing my research on Human and Civil Rights abuses and violations in ABA. Mr Johnson advises that we should give “the other side” a chance to speak. In fact, neurotyoicals control the dialogue . (Look what happens when one Autistic researcher tries to speak up???) Very interesting to me that there is such a massive movement to shut down the voices of Autistics and ABA survivors. Why are you so afraid to let us speak?? (I realize that ABA is now a billion dollar industry and that parents do not accept Autistic children and feel that we need to be cured- just as parents used to try to cure gay children with these same methods not very long ago). We will not be silenced. We are used to being tortured on a daily basis- you have no idea what we go through. Continue to attack Autistics speaking out against ABA,it just shows your true colors. .I did not get this far by accident. I,like most Autistics am pretty brave.

  2. Dr Kathleen Levinstein

    I am a 55 yo PhD with Autism, who is an Asst Professor at the University of Michigan. I am completing numerous anthologies on Human Beings who have been hurt by ABA. Pls contact me if you want to tell your story..

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