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

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To be proactive is to anticipate, prepare, and intervene based on a long-term vision and perspective. When anticipating the future, you react accordingly before it actually happens.

To be reactive is to respond to a situation, rather than creating or controlling it.

How does this relate to what we do with our children? What we do in the short term affects the long term; and that myopic/short-sighted intervention can have a negative impact on outcomes.

One contributing cause is lack of a vision, lack of hope, and a willingness to accept a short-term possible solution. Another underlying issue is that most teachers and therapists are not involved for the long term and are not aware of the long-term results or consequences of their interventions. The third contributing factor is a lack of awareness and knowledge of the whole child. When looking only at pieces, one cannot perceive, acknowledge, utilize, or evaluate the impact on the gestalt of the individual.

Armed with decades of experience working with tens of thousands of “Whole Children”, it is relatively easy for us at NACD to look at your children and to be proactive. Being proactive requires looking at a child’s strengths and talents. In addition we must look at weaknesses and issues, determine what pieces we need to put together or issues we need to resolve, in what order, and in what priority to produce a good ultimate outcome. One of the benefits of working with “Whole Children,” working with the full spectrum of children, and working with individuals (often for decades) is that we have the benefit of experience and perspective.

Working with “Whole Children”

I have spoken at length about the importance of working with “Whole Children.” Working with “Whole Children” simply means we are working with all aspects of the child from their health, sleep, sensory function, social function, behavior, speech, language, fine and gross motor function, cognition, and academic development to their attitude, self image, etc. I don’t know if it is possible to be truly proactive without working with the whole child. Most children have disconnected individuals addressing various aspects of their lives, coming and going; and the more issues a child has, generally the more people there are working reactively, not proactively, with them. Working “reactively” means they are reacting to what is perceived as an immediate issue or need, without an historic or long range, long-term vision.

In discussing all of the people who can be involved with your child, you are tempted to associate them all somehow, to call them a team or an army, suggesting that they are somehow a cohesive unit working together. The reality is that they are individuals working with pieces, more often than not in virtual isolation. Such individuals are often working reactively, not proactively. They are working with their one piece generally in virtual isolation and establishing their piece as their priority and generally from a perspective that they are only going to be involved for a relatively short period of time. Working with children for only a few months, or even years, does not permit one to gain a long-term perspective and to understand the implications of what is in reality short-term, reactive intervention.

Proactive Intervention

To help clarify what it means to be proactive, it is best to look at the antonyms or words that are essentially the opposite of proactive. Those words include such things as myopic or short-sighted or improvident. Another way to look at this is to say we are being reactive as opposed to proactive.

Reactive Intervention

If we are being reactive, we are reacting to problems; if we are being proactive we are looking forward, into the future, so as to prepare for the future. As parents with limited experience, it’s often difficult to be proactive. It’s difficult to be proactive if you have not had the experience and knowledge to know the degree to which what is happening today, or not happening today, is going to influence tomorrow, next week, next year, and the future. Sadly, many therapists and educators do not work with individuals over long periods, as in decades, to understand what issues can be created by working perhaps hard, but not working from a long-term, proactive perspective.

Some common examples of being reactive rather than proactive would include things like teaching young children with Down syndrome to sign. (link to Signing contra-indicated for DS) The perception is that Johnny isn’t talking and is frustrated, so let’s give him a means of communication that he can use soon–signing. Looking at the short-term results, which may be the child being able to communicate a few basic needs and being perhaps less frustrated, reinforces the use of signing. But if looked at long-term and proactively, we discover that we have had a negative impact on the child’s ultimate ability to communicate verbally, and even more significantly, have had a negative impact on the development of the child’s auditory processing, with resulting adverse affects on the child’s cognition and global maturity. Reactive intervention is not the best intervention.

One of the more glaring areas where we often see disastrous effects of reactive intervention is in the area of mobility and walking. We sometimes have children come to us who never developed the neurodevelopmental or the structural foundation that can ultimately produce a child who is a functional walker. Being proactive, we know that we have to follow a typical sequence of development, which among other things, requires the neurological, tactile, proprioceptive, and structure pieces of the child going through the necessary developmental stages before working on standing and walking. Children in walkers who had been “helped” to stand before they had the strength and structure to do it themselves, or do it properly, and then “assisted” to walk using various apparatuses to hold them up so they could move their legs, usually end up not being able to walk independently. Often they have created structural issues that even numerous surgical interventions cannot properly address. Children you see walking with walkers or braces and crutches almost always end up in wheelchairs. Yes, the goal is walking; but can we achieve it by circumventing the foundational pieces?

An example of a reactive approach in education is encouraging children to write before they neuro-developmentally are ready. Sixty or seventy years ago, it was not uncommon to make left-handed children in kindergarten and first grade, at five or six years of age, write with their right hands. This practice was stopped because interfering with the natural development of handedness resulted in a plethora of neurological and even emotional problems. Today this isn’t happening; but today we have preschool education, which is even creating more problems by making children write before they developmentally have even firmly established a dominant hand. A child may be leaning toward the right hand, for example, at three or four, and if encouraged to write with the right hand, establish a skill set for writing with the right hand. Ultimately such a child may turn out to be left-handed. Because the skill set for this specific function was established, the child will tend to continue to write with the right hand and is generally encouraged to continue to write with the right hand, resulting in all of the issues that were created 60 years ago, including poor handwriting.

The Reality of Education

The reality of education in general is that the very structure and organization of school as we generally know it almost defines reactive intervention. Education is generally perceived from the short-term perspective of needing to get specific curriculum material into a child’s brain, whether or not the material is targeted to the specific child’s present knowledge base, to their level of processing and understanding, let alone their interests. The net result of reactive education is very often poor outcomes, children often learning to dislike or “hate” school, which becomes synonymous with hating learning; and often because of the abnormal environment of narrow competition, leaving the system with a damaged self-image and lacking a perspective of who they are and what they can be. Proactively it’s not difficult to understand that at the foundation of education we should have the goal of teaching the child to love learning and to make them feel that they are smart and can learn. Is anyone shocked to hear that children do well learning things they love and struggle with what they hate? If the goal of education is to produce adults who are actually educated, who become not just lifelong readers, but life long learners with the confidence to pursue their hopes and dreams, then the system needs to be re-evaluated and made proactive not reactive.

Educational & Therapeutic Perceptions

There are numerous examples in educational and therapeutic intervention that demonstrate the negative aspects of reactive intervention. The problem is ubiquitous, and it doesn’t seem to be changing anytime soon. Proactive intervention implores us to look at the child from a long-term perspective and with a vision and a plan to produce better outcomes. If existing outcomes are perceived as actual reflections of an individual’s potential, there is no motivation for change.

Perception of potential is a reflection of one’s experience. I recall a colleague correcting me many decades ago when I referred to someone as having twenty years of experience. He told me that the reality was that they had a year of experience twenty times, not twenty years of experience. I have been extremely disappointed to see how incredibly slow change in traditional education and therapeutic intervention has been. But doing the same reactive things year after year and producing the same limited results has not stoked change, but has reinforced the perspective of limited potential, and has encouraged many educators and therapists to keep doing the same things, producing the same inevitable outcomes.

Proactive intervention is stimulated by a need to do things better and to improve outcomes, all of which is perpetuated by a vision of what can be and what should be.

Reprinted by permission of The NACD Foundation, Volume 32 No. 5, 2019 ©NACD

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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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