My Autistic Brain Tumor Survivor

My Opinion of Applied Behavior Analysis

ABA: Applied Behavior Analysis

ABA: Applied Behavior Analysis

Whose opinion on Applied Behavior Analysis do you trust, the so called trained and educated “experts”, or individuals with autism who have been forced to undergo ABA treatment and were traumatized and abused by it?

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Disclaimer: The type of ABA I am discussing here may not be they type of ABA you or your child has experience with. Many types of humane and helpful autism treatment therapies are only called ABA in order to get insurances to cover them.

What we are discussing here is the type of ABA developed by Dr.Ivar Lovass: grueling, intensive 40 hours a week sessions, forcing children with autism to comply, not permitting them to express an opinion, never allowing them to speak up for themselves, and requiring them to give over to the therapist complete control of their bodies.  

Imagine just for a minute the implications of a therapy indirectly teaching your child that he or she must submit to all who may demand control over his or her body!
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According to the so call Autism “Experts”, evidence suggests that ABA or Applied Behavior Analysis is the best and most effective treatment available for children with autism.

I have always felt that ABA was a bit harsh, much like training a dog to obey. Sitting autistic children down at a table for several hours a day until they imitate arbitrary and pointless commands such as touching their noses, just to teach/force them to obey and comply seems a bit cruel to me.

I have always been glad that I listened to my heart and not the experts about ABA. I never did succumb to putting Bethany through an ABA behavioral program, even though it was recommended, or so I thought, anyway!

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Bethany has a long history of aggressive and sometimes violent behavior. It’s not pleasant and I’d like for it to stop.

Someone suggested getting a consult with a behavior therapist and so we did.

It was decided that Bethany gets aggressive when she can’t get what she wants.

I told the therapist that Bethany doesn’t like charts, that she isn’t motivated by rewards and that I really believe  her aggression is caused by seizures and side effects of seizure medications.

Never-the-less, a behavior plan was set up. It came complete with a 5 colored clip chart where Bethany would earn a reward if she didn’t engage in violent behavior when she couldn’t get what she wanted. Purple and blue were the good behavior zones, yellow and green were neutral, and red was bad. She was supposed to work for a reward 5 times a day!!

It didn’t take long for me to realize that the only thing Bethany really understood about this plan was that red was bad. She became even more violent when her clip was in the red zone!

I felt as if this plan was just a humiliating public display of Bethany’s failure to control her anger.

Not to worry, said the therapist. We’ll come up with a new plan.

This time the plan incorporated a social story and an alternative choice board. Instead of having color coded behavior “zones”, she earned either smiley faces or red X’s. She was supposed to earn a reward 3 times a day and the chart was not to be publicly displayed, but kept in a notebook.

We pretty much got the same result as the first plan. The only thing Bethany understood about the plan was that red X’s were bad and seeing them made her more aggressive.

That was it. I am now officially done with behavior charts. Using them made me feel like I was emotionally abusing my daughter.

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Even if I hadn’t come to the conclusion that behavior charts are emotionally abusive, Bethany does not understand cause and effect: a skill that I believe is necessary for understanding how behavior charts and reward systems work.

After 8 years of having an iPad and needing to recharge its batteries, she still to this day, does not understand that we need to recharge it. When her iPad shuts off, she does not stop and think, “Oh, I need to plug my iPad in now.” She just gets mad and throws it and aggressively complains about it every. single. time!

After 8 years of having her iPad taken away when she throws it, she still throws it when she gets mad. She does not stop and say to herself, “Hmmm…When I threw my iPad all those 800 other times, my mom took it away, so I will not throw it anymore.”

And these are just two examples of many, demonstrating that Bethany probably does not understand the concept of cause and effect.

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Many times Bethany seems to get angry for no discernible reason. At least not a reason that I can figure out, anyway.

She doesn’t just get mad when she can’t have her own way.

She can go to bed at night happy as a clam and wake up violent.

Which is why I honestly and truly believe that most of her aggression is being cause by seizures and side effects of seizure medications.

I believe that when she is raging she is suffering, not manipulating.

In my opinion, expecting Bethany to control a behavior that is beyond her ability to control by humiliating and shaming her with behavior charts and rewards or no rewards/punishments is nothing short of emotional abuse.

I informed the therapist that we were done with charts and for some reason decided to ask her what her degree was in. When she told me it was in ABA, my heart sank.

Ridiculously, the thought had never even crossed my mind that these behavior charts were part of an ABA program.  Of course, using behavior charts is not as cruel as forcing a child to spend 40 hours a week, sitting at a desk touching his or her  nose over and over again, but still if using them humiliates and shames a child, then they are abusive, in my book.

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While doing some research on ABA  I came across a few testimonials of adults with autism who were taught using various forms of the ABA method of treatment and they are not pretty.

  • * The following is a must read in order to truly understand the frighteningly harmful effects and abuse of ABA*: In her post ABA, the author of, “Unstrange Mind” an autistic adult, talks about her negative and abusive experiences with ABA and how she has experienced PTSD because of it!
  • Amy Sequenzia, a non-speaking autisitic who was forced to endure ABA therapy says that Autistic children are forced to learn how to pretend and are not allowed to have their own opinions or have any control over what happens to them. She believes that most ABA therapists are making a lot of money by stealing the childhoods of Autistic children. Forcing children with autism to endure 40 hours/week of such treatment would be considered abuse, if done to anyone other than autistic individuals. –My Thoughts on ABA.
  • In her post, Why I left ABA, a former ABA therapist believes that compliance training and therapy goals are two of the the most harmful aspects of many forms of ABA. She knows many children who are in ABA, 5 days a week for 25-40 hours a week. She is very concerned that they are being taught that there is something wrong with them just because they were born with a different neurotype.

The plain and simple fact is that many adults with autism who have been forced to endure an ABA program consider it to have been an abusive experience and some even suffer with post-traumatic stress caused by that experience.

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I personally believe that listening to the voices of the people with autism who are coming forward and telling us that ABA is an abusive treatment and taking what they say to heart is of the utmost importance for the safety, happiness, and well being of our children with autism.

I trust the experiences of the real experts on autism, those precious individuals that actually have autism over the so called, trained and educated “Experts” that do not have autism and are only seeking to force people with autism to comply and conform to a standard of behavior that is more acceptable to our society.

How about you? What do you think about ABA?

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Resources:

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15 Comments

  1. Phyllis

    We used ABA with Alex when he was young with limited success. We ended up dropping out of the school system because they didn’t know what else to offer and continuing with it would have been abusive. From what I know about Bethany, it would not work for her either.

    Reply
    1. Sylvia (Post author)

      I’m so glad you didn’t fall for the “experts'” opinions, Phyllis. I just want to also let you know how much I appreciate all your love and support!

      Reply
  2. Nisha

    ABA sounds harsh to me as well. When it comes to kids moms know best go with your gut.

    Reply
    1. Sylvia (Post author)

      Yes, Nisha. If a therapy feels wrong to us moms, it probably is!

      Reply
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  4. Cyndi

    Funny that I should come across this when I JUST posted my own vlog about ABA being awful and why stimming is necessary. https://www.youtube.com/watch?v=nEoW5rfNXM4 (I’m an autistic adult btw!)

    Bethany is a sweet lady who is doing the best she can, bless her.

    Also, can I point out one thing? Most autistic people take some offense to being called “people with autism.” Autism is an inherent part of my identity just like my religion. I HAVE brown hair, I HAVE blue eyes, I HAVE pale skin. But I’m a CATHOLIC person. I’m an AUTISTIC person. I’m CATHOLIC. I’m AUTISTIC. I don’t “have” Catholicism nor do I “have” autism. I’m Catholic and autistic. 🙂 Saying “with autism” implies it’s a disease or a bad thing like if you say “I have diarrhea” or “I have cancer”. (I have neither btw.)

    Just trying to help you with the proper lingo as an autistic person myself. 🙂 Great blog!

    Reply
    1. Sylvia (Post author)

      Thanks, Cyndi. I appreciate this so much. I never want to be offensive. I’m not always up to date with the proper lingo and I probably have just been listening to the so called “experts” on what is proper and we all know who the real experts are!! I just subscribed to your channel and am looking forward to watching and learning from an expert!

      Reply
  5. Lori La Terra Bellina

    Sylvia, thank you, as always, for your honesty in sharing your experiences and opinions. thank you also for always making it feel “safe” for others to respond with their own.

    I am the mom to a 10 year old boy who is autistic and nonverbal. We have partcipated in what we have called ABA since he was 3 1/2. i read your blog and watched Cyndi’s vlog with much interest. To some degree, I think we need to redefine ABA. My heart sank when Cyndi said those who think their version of ABA is different need to shut up. But what she described is so unlike what we have been doing (and I say “we” becuase, as his mom, I design the program, from deciding what to work on when, with what materials, and participate often in the actual sessions).
    First of all, stimming is considered a state of being…it is neither encouraged or discouraged….it is just is. Like blinking or breathing. Unless it is a frustrated or excited stim, in which case we either use that communication to determine what is bothering him, or celebrate whatever he is communicating he is excited about.
    Next, discrete trial training allows us to concentrate on individual skills… Broken down into very small, digestable pieces…and see, on paper, where we need more work and when the skill is mastered enough to add the next part. We do not practice skills for the sake of following directions. The work he does intensively supports what he needs help in, either at school or in our day to day lives…right now, namely, things like reading comprehension, safety and expanding communication. i use many of the skills I have learned through this process with my other two sons (who happen to be neurotypical) as well as others in my life…. For me, breaking things down and practicing often makes sense and helps me build confidence… I sincerely hope my son feels the same way. He very rarely tries to “get out” of sessions, and if he does, we change it up, allowing for more social or community activities the day versus “tablework”. If he expresses frustration with a specific topic or drill, either with “traditional” communication (aka his communnication device) or through behavioral communication, we look for new ways to reach the same goal, while also explaining what exactly we are working on and why.
    Sessions are between 3 and 3 1/2 hours a day, and roughly consist of 1-1.5 hours at the table, and the rest of time following his interests to work those target skills…reading, safety, and communication into our “natural” family setting and community activities.
    I cannot see the difference between asking him to perform a task like “touch the picture that matches the sentence” and a typical classroom worksheet. I don’t feel like it is any more condescending to ask someone to touch their nose (we did work on body parts earlier in his program), than it is to run sight word drills or flashcards. Each child learns differently and this has helped him grow tremendously. Some of the therapists we have worked with are his favorite people in the world to this day.
    I admit I struggle with helping him be his most authentic self, versus helping him “fit in”, but I am sure many parents walk this line. I pray for the grace to know that difference all the time.
    Sorry for the long, disjointed post. I appreciate you opening the floor for people to share our stories!

    Reply
    1. Cyndi

      Thanks for looking at my video. It’s part of a playlist you can find here: https://www.youtube.com/playlist?list=PL913A79AC5CB91B86

      Some things that are called ABA are not the abusive thing I described, but they call it ABA for insurance coverage. The ABA I speak of was initiated by Ivar Lovaas and it is still in use today. But the words “ABA” or “Applied Behavioral Analysis” has a very, very, very bad connotation to autistic people who went through the Lovaas version. I purposely didn’t specify it because I knew people would be upset and think about it a little. My whole “Shut up and listen” spiel was treating people who watch the way autistic people are treated– we get silenced and spoken over so much because we’re “not supposed to know or be experts on ourselves, we should be good little puppets who disappear.” (I’m not kidding, some people see autism like that!)

      If a therapist doesn’t let you watch them work, be wary. I’m glad the ones you work with are good ones who treat your son with respect. There are so many who treat autistic people like they’re subhuman. That’s the rhetoric of Autism Speaks and that’s why autistic people literally spit at and hate that organization. I suggest you Google “Autism Speaks Controversy” and read what people have said.

      Also, watch out for people who say they’re “autism experts” because the only true autism experts are autistic people themselves. Knowing one person with autism means you know exactly one person with autism. It’s not the same as people who are totally blind and totally deaf and we know they see or hear nothing. Autism is called a spectrum for a reason. 🙂 I have a tumblr post to explain what the autism spectrum really is because people misunderstand it so much. http://butterflyinthewell.tumblr.com/post/121525452103/images-shows-the-emission-spectra-of-different

      Have a great day and thanks for reading. I’m prone to rambling too so I totally understand.

      Reply
    2. Sylvia (Post author)

      Thanks for your insight, Lori. I really do appreciate you taking the time to share your story I think your son’s program sounds awesome and not at all like the kind of ABA that I am criticizing. I do similar activities with Bethany. The kind of ABA that I am talking about is the kind that uses aversives, shaming, punishments and harsh treatments. The kind that does not take the person’s feelings into account. There is nothing wrong with telling a child to touch his nose, but there is something wrong when a child is forced to sit in a chair for hours and hours until he does finally touch his nose or do whatever else was asked of him. And there is something wrong with a program that makes a child feel as if he or she must turn over all control over his body to a therapist or even a parent. Your son’s program isn’t abusive. It takes his wants, needs, and feelings into account.

      Reply
  6. Anna

    For me, it has nothing to do with helping and everything to do with control. I have never experienced ABA that I remember, but I think it would feel like being a size 10 person forced into size 2 pants and then called unattractive and fat because they are not a size 2. The sole motivation for doing well in ABA is fear of failure, even if it’s “soft” ABA. It teaches “Comply or die” rather than effective communication, which can eliminate undesirable behaviors. Unfortunately, there is a Lovaas center near my house and it serves as a reminder of the way autistic people are silenced.

    Reply
    1. Sylvia (Post author)

      Yes, that’s it! They are being silenced and forced to obey. Of course sometimes we do just have to do something like go to the doctor, but being bullied to obey just for the sake of teaching them who’s boss and forcing them to appearing more “normal” is wrong.

      Reply
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