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.”

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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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my thoughts on Applied Behavior Analysis (ABA) – Autism

my thoughts on ABA
*The opinions expressed in this post are solely mine and based on our experience.

When the words “Your child has Autism” are spoken, most parents begin searching for ways to help their child. The psychologist offers advice, doctors suggest medication and therapy, friends refer to characters in movies or geniuses, other Autism parents recommend solutions that worked for their child. But one of the most common therapies you’ll hear about is Applied Behavior Analysis (ABA).

Autism parents invest tens of thousands of dollars per year on ABA, and many children spend thirty to forty hours per week in this intense therapy.

When I learned what true ABA is, I wasn’t a fan. Many therapists sit children down in a chair across the table and work intensely with the child. They will also focus on one skill such as putting a shirt on dozens of times in one session. This may work for some kids, but what about the ones who are constantly on the move, e.g. my son, Jeremiah? Jeremiah has learned to sit for longer periods of time, using fidgets* and routine, but working on something he’s not interested in (there aren’t many things at this time) would prove futile.

Some therapists use a reward system to get the child to perform, they may say, “After you put the puzzle together you may play with bubbles.” Jeremiah wouldn’t have been able to follow a similar direction until very recently. Even at this time he’s not quite there. Directions that are part of his daily routine are more at his ability level right now.

For example, because we’re working on “First/Then”* concepts at home and at school, he’s grasping what it means. I can take his doodle pad (which he loves and always has with him), and say, “Eat your snack first, then you can have your doodle pad.” But, to have him engage in an activity he doesn’t like, most anything besides puzzles, work boxes, peg boards, or coloring, you would have a meltdown with a crying, screaming child.

Frankly, I don’t want my child crying and screaming because someone wants him to learn his colors, look through a book, or get himself dressed. We push through on certain hygienic rituals like brushing teeth and taking a shower whether he’s crying or not, some things have to be done. The world can thank us later.

But, him crying and screaming because someone is making him learn to put his pants on or be involved in a group activity is not what I want for my child. I agree with constantly working with a child (with plenty of uninterrupted free play in between), we do this. We could work on education more, such as talking about colors and the like, however, we work on letters, shapes, and numbers on his doodle pad that he always has in hand.

Every time we get him dressed we walk through with words what he needs to do (in the beginning we used a lot of hand over hand teaching and less words), “Shirt over your head, arms in,” “Put your pants on, lift your leg, put your leg in.” It’s taken a while, but he is now helping to pull his pants on and has been taking them off for quite some time. 🙂

This is Jeremiah’s childhood and I want him to enjoy it like any other kid. I don’t want him miserable, working on the same skills over and over, hour after hour. Many ABA therapists will repeat the same skill over fifteen times in one session and I believe I’m being conservative with that number.

all children deserve a childhood

A family member recently asked me if ABA can work for some and not for others. Sure. ABA can produce skills, but in our case it hasn’t. We’ve used a modified form of ABA, but more on that in a bit. The true, follow the guidelines ABA has actually caused our son to lose skills. I’m sure many parents who stand behind ABA are shocked to hear this. You could say it was because of regression that he stopped using these skills, but he lost two, and they’ve never resurfaced.

When Jeremiah entered preschool he was using the sign language for “more” and saying, “maw” in the correct context. We shared this with his teachers, aides, and therapists, and most of them fostered his skill in the right way.

However, the speech pathologist did not.

Every time she worked with him, which was one day per week, she would do so at snack time. She would withhold his gold-fish crackers from him, and require him to use the sign for “more” and hand him ONE fish if he did. She would repeat this twenty or more times every time she worked with him. Because gold-fish crackers were highly motivating for him, that’s all she focused on.

Do you know what her tenacity resulted in? Jeremiah stopped signing and saying the word “more.” Completely stopped.

As for the modified ABA I mentioned, our amazing Behavior Specialist is the one who’s helped us with the adaptation. She’s not a fan of ABA in it’s true form either, but she will modify it for a child.

Here’s an example of modified ABA in a natural setting. We worked on something that Jeremiah was doing that we wanted stopped; he was hitting the t.v. during movies (sometimes because of excitement, other times seemingly just because). Lia* suggested we pause the movie each time Jeremiah got too close to the t.v. At first we pushed “pause,” walked up to him and gently moved him back the distance we wanted him from the t.v., and calmly said, “Scoot back,” as we moved him. Once he was a certain distance from the television, we pushed “play” and praised him, “Thank you for scooting back.”

As he learned what pausing the movie meant, we didn’t need to say anything (only praised when he did what was expected) because he moved back on his own. Lia also reiterated how important it is to…

focus more on his positive behaviors

…like praising when he does move away from the t.v. [ABA isn’t wrong, but I do think it’s taken too far], and when done in such a way, it’s taking childhood away from so many children.

The article, Would You Accept This Behavior Towards a Non-Autistic Child takes a look at how we treat those on the Spectrum. I highly suggest reading it and taking a look at how your child is treated at school, in your home, and in therapy. Ask yourself that question:

Would you accept this behavior towards a non-autistic child?

Next week I’ll be sharing some professionals thoughts on ABA as well as perspectives from adults on the spectrum and a mom who’s had a magnitude of success with her son (he’s fifteen, in college, and on track for a Nobel Prize) and hundreds of other kids with Autism whom she’s helped share their voice. Here is that article: more perspectives on Applied Behavior Analysis

*Jeremiah is 4 1/2 and nonverbal.

*Fidgets – sensory type tools used to calm a person. http://www.developmental-delay.com defines fidgets as tools that have
-Interesting tactile composition such as squeezable or spiky massagers
-Heaviness or pliability of the product
-Movement opportunities it provides our hands (can the child squeeze it?)
-Does Not make any noise, so it not a distraction to others
-Several different ones that are small enough to put in pockets”

 

*First/Then is simply having the child do an activity, and afterwards they get to do something they want to do. It can also be used to notify a child of an upcoming event. “First we are getting our pajamas on, then we will read a book.” Or if your child needs to leave an activity to do something they dislike, you can say, “First we’re going to wash hands, then you can play with the iPad.” Once learned, this phrase makes transitions easier, and works best if used in all their environments.

*Names changed to protect privacy.
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