By Carolyn Takos

Intro by Lyn Waldeck

In many of our recent newsletters, NACD has been focusing on creating and changing behavior for the better by the feedback the child is given. Carolyn Takos is a very dedicated NACD mom who first came to us in desperation to reverse a behavioral nightmare created during their time with ABA (Applied Behavioral Analysis). We have asked Carolyn to tell her story of how the wrong feedback affected her son and their family.

Carolyn:

For many years, ABA therapy has been the “cure-all” for everyone on the Autism Spectrum; our experience has been one where the bad consequences have far outweighed any benefits from it. My son was diagnosed with High Functioning Level One Autism, formerly known as Aspergers. ABA therapy was recommended for him, and I, not knowing any better, got him signed up. They had him for almost a year for 20 hours a week. It’s been two years since he “graduated” and I’m still trying to undo some of the things that they did to him. They left us with eightproblems that needed correction. It’s important to know that during ABA therapy, each child is assigned to a one-on-one therapist.

The positive outcome from ABA might be an acceptance of differences among children; but the negatives are:

1. Needs “help” with everything – If he didn’t want to do something, he’d say he needed help and they were quick to do it for him. And I mean everything, from putting on shoes to coloring to writing his name; everything.

2. He doesn’t play by himself -Someone was always with him and doing things with him, so now he expects the same treatment at home. Since he is an only child, he expects me to be that one-on-one playmate, 24/7.

3. Candy was given for behaviors they wanted to see, like treat training a dog.

4. He learned the benefits of poor behavior – He learned that if he didn’t want to do something or be somewhere, then all he had to do was act poorly and he would be removed from the situation. This could be anything from a “temper-tantrum” to hitting people in authority. He also learned that if he “recovered” from the poor behavior, he would get candy. Ultimately, he was rewarded for some of the worst behavior a child can do.

5. They used this treat training to reinforce the behaviors they wanted to see; one instance was waiting patiently. At the time of his graduation, they had “worked up” to him waiting patiently for one minute and that would result in a treat.

6. He learned that he could demand the attention of his therapist by acting poorly, even when I was getting a report on his daily progress. She stopped in the middle of a sentence and gave her complete attention to him. Even now, he will rudely demand my attention when I’m trying to talk to someone else. His rudeness can start with just trying to get my attention to making so much noise that I can’t hear or talk over him. He has even used “hugs” as a means to get my attention; not loving hugs, but an aggressive throwing himself at me to interrupt the conversation.

7. Friends aren’t friends. They called everyone there a friend, even though one, maybe two, actually acted like friends. The rest did not display anything friendly toward him. This resulted in finding “friends” at the park from kids who were trying to avoid him or were even being mean to him. It was heartbreaking to watch the treatment of the “friends” from the park and how he would happily tell me he made new friends. I’m happy to say that he doesn’t claim strangers as friends now, but he also doesn’t know how to be a friend either.

8. Sorry is a magic word. And I mean a really magic word. If he said he was sorry, even though he wasn’t, then the consequences for his actions just went away. I spoke with the directer about this; just ask anyone in prison for manslaughter and they’ll tell you “sorry” doesn’t make the consequences go away. He was absolutely shocked the first time I explained to him that you actually, need to feel remorse for your actions for “sorry” to be real and even then it doesn’t magically get you out of the consequences.

If you ask me if ABA helped, I have to say absolutely not. At first, when I looked at this list I thought, “We’ve only corrected half of this;” but reality is, we’re still working on almost every point. It’s been two years since he’s graduated, and we are only a little bit through undoing the damage that ABA caused. At least it’s been forward progress.

Back to Lyn:

Fortunately for this family, NACD understands how to harness neuroplasticity in order to create change in sensory dysfunction, how to build processing, how to develop executive function, and how to use feedback to change behavior patterns. This family is diligent in doing their program and more importantly are good at staying very connected so that we can guide them to a better place in life. From the beginning I knew we were working with a smart boy. I knew there was a sweet kid wanting to emerge. Today life is less of a horror story, and the kind, confident, and well-adjusted kid is shining through.

Reprinted by permission of The NACD Foundation, Volume 37 No. 4, 2024 ©NACD

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A new study published in JAMA Pediatrics involving 9,038 young autistic children has confirmed what we have known for decades. The research disputes the “study” from the ‘80s that had said that intensive ABA works.  Autism is a neurodevelopmental issue, and ABA-based behavioral skill-based intervention is minimally effective, at best, and fails to address the foundational sensory, neurodevelopmental issues. 

Related Article

Reprinted by permission of The NACD Foundation, Volume 37 No. 4, 2024 ©NACD

The post ABA Study appeared first on NACD International | The National Association for Child Development.

When our son was about four, we took him for a consultation with a well-known pediatric neurologist. Because Ben used just a few words, made little eye contact and showed little interest in other children, the diagnosis of Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) was no surprise, yet it was still crushing to hear it. There was no “cure” for PDD-NOS the doctor said, but to cope with some of the symptoms, she recommended speech and occupational therapy, along with Applied Behavior Analysis (ABA).

Soon after receiving the diagnosis, Ben started speech therapy and a daily home ABA program and went to an ABA center twice each week. We also entered a season of intense biomedical interventions and supplements. We consulted with DAN doctors, did blood tests and sent blood overseas, changed his diet and used supplements. With all of that, Ben began improving a little, but something was still missing. The various professionals working with our son didn’t really understand some of our unique requests and even with all this help, we felt there was more possible. Intuitively, we knew that an integrated method would help our child best, but had no idea where to find it. Luckily, while researching homeschooling online, we came across a message from an Australian mom who spoke about an integrated approach to treating Autism. This is how we learned about the NACD.

At first, in addition to implementing the NACD program, we continued with ABA and speech therapy (ST). Later, when we saw that the NACD speech activities were effective, even more so than what we had been doing until then, we discontinued ST. Meanwhile, Ben continued to participate in an ABA social skills group for the extra local support since we were the only NACD family in South Africa at that time.

Before NACD, Ben insisted on watching the same movie over and over again, obsessed over trains and cars and stimmed incessantly on their wheels. He also laid on the floor and looked at things sideways. We learned from NACD that he was using his peripheral vision, which is not unusual for children on the spectrum to do, but which NACD identifies as a harmful DSA or Debilitating Sensory Addiction. He was not interested in other people and if he didn’t want to do something he just wouldn’t comply and wouldn’t focus on the person addressing him. Within six months of being on the NACD program however, Ben’s ability to function improved so dramatically that we could tell he was beginning to connect with our world.

Now, after five years of working with the NACD, when people meet Ben for the first time they can’t tell he has special needs. He enjoys judo, gymnastics, Sunday school, woodworking, drama, art, and music classes—all in an environment that is not controlled by mom and dad. He integrates well with other children and gets along just fine. He still has some mannerisms that make him unique, but they are virtually unnoticeable by outsiders and I can honestly say that nothing in him is bad enough that needs explanation.

We are also quite pleased with his academic development. Though it took him a while to learn to read, currently at 10 years old and in the 4^th grade, he is reading at a 6^th grade level. He is doing 6^th grade math, has beautiful handwriting, great general knowledge and his ability to generalize information and to think conceptually is expanding at a steady rate. In fact, seeing how Ben is flourishing while following the NACD homeschool program, we had our other two children evaluated as well. Sara has been great at helping us organize our day efficiently, explaining to us why we do certain program pieces and teaching us how to implement them correctly. NACD has given us structure and support for daily life.

Four-and-one-half years after we began working with the NACD, we took Ben to the same pediatric neurologist to certify a form making us eligible for a tax deduction. Before meeting with Ben, the doctor inquired about him and what therapies we were implementing. When we told her about the NACD she couldn’t understand why or how a mom would do all the work at home and began telling us about a school for children with autism which would be the perfect place for our son. She went on and on for a while trying to convince us how good this school would be for Ben. Then she invited Ben in, had a lengthy conversation with him and asked him several conceptual questions, which he easily answered. The doctor was simply speechless! At the end of the session, she turned to us and said, “Forget everything I’ve said about the school. Keep doing what you are doing, because it obviously works.” We knew Ben was no longer locked up in his little world, but oh, how satisfying it was to receive the validation of the expert!

We are blessed by the work of NACD. It is an integral part of our lives, from helping us understand our children to giving us hope for a brighter, more normal future for our special son.

—Tammy, mother of Ben (as told to Iliana Clift)

Update 2017

Let’s jump ahead to today—Spring 2017! Ben has been on our program for several years since this article was originally written. He, along with his brother Levi and two sisters, Shiloh and Eden are all seasoned NACD kids. I have loved working with this family, whom I have never met in person, but thankfully technology allows us to meet using Facetime and Skype, where I have gotten to know this wonderful South African family even more. I have wanted to write an update on Ben and his family, because they are just doing so fantastic!

Ben, who is 13 1/2, is quite the scientist. This past month he was selected to spend five days on a cruise to the continental shelf to learn about birds. (He is an expert.) He is in the Junior Rangers program and is applying to take a Junior Biology course at the local aquarium (they live near Capetown, South Africa), where only a few children from the state are selected. This is for college credit. He reads biology textbooks for fun and is so present and driven to learn more and help animals. We are already looking into opportunities for him to help pursue his dreams. I am so proud of him. He is so fun to talk to and I learn so much from our conversations!

Since then, his younger brother Levi has also been on program for the last 4-5 years. He is homeschooled like his brother, but hasn’t had any developmental issues. Reading has been a struggle but he is getting much, much better. Through dedicated work on processing, on establishing neurological organization and providing him with the right input, he is in a much better place academically, reading and is quite the math expert. He can be emotional, but only because he wants to do things well. Speaking of doing things well, this kid started doing competitive stand-up paddleboarding and surfing a few years ago. He has done exceptionally well—so well that Under Armour has sponsored him as the company moves their product into South Africa. In addition, he has won many competitions, is the top stand-up paddleboarder for his age in the COUNTRY and is possibly Olympics bound. He is 11! How cool is that? As homeschoolers, they generally get to start their days surfing or “SUPing” before they read. I wish I could do that!

Then you have the two little girls. Shiloh, who is very bright, is just starting her homeschool journey, while Eden is already in the mix of processing, reading, flashcards, exercise, fun unit studies, chores and learning from her siblings. These two will bring their own unique gifts to the table as we learn more about their passions.

I feel so honored to know the Mayes family. I have much respect for all their hard work and dedication. They are a true example of how different our children are and how each one has their own unique gifts to bring to our world. We need scientists. We need athletes. We need thinkers. We need doers. We need talent. We need comedians. We need businessmen. We need entrepreneurs. We need doctors. We need engineers. We need cooks. We need landscape artists. Our children truly can be anything with the gifts they have. Much praise to parents out there like the Mayes family, who help their children reach those dreams and follow their passions.

—Sara Erling, NACD Developmentalist

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