It is hard to believe that my involvement with NACD started back in 1992, over 25 years ago.  With that said I have had the pleasure of watching many young children grow up to be highly capable adults. Some of these wonderful families are in regular contact while other times I am totally floored, when a voice from the past reaches out after many years. This last month, I heard from a wonderful Mom that I had lost contact with. I worked with her son and his brothers many years ago and am so pleased to hear that Christopher has such a wonderfully fulfilling adult life. For you moms that just need to hear that there is a wonderful future within reach, enjoy this article that Ana Grosshauser shares with us.
—Lyn Waldeck, NACD Developmentalist

What a miracle and wondrous gift to receive our firstborn child! As most new parents and family, we were thrilled! Here was a perfectly formed and beautiful child who seemed so content and peaceful.

Little did we know that this peacefulness and contentment would change so quickly.

From the second day he was born, Christopher cried almost constantly. It was difficult to console him. Breastfeeding was a challenge for him, and so was the bottle. At three weeks of age, he was diagnosed with his first ear infection. This was the beginning of three and a half years of back to back ear infections and antibiotics. Christopher was constantly fussy and crying. He never slept through the night, nor would he nap during the day. Besides the ear infections, Christopher often had bronchitis and pneumonia. He would want to be held, but then felt uncomfortable being held. It was not easy to console him. He usually had to be marched before he would settle down.

Additionally, the vaccinations seemed to make things worse. He reacted with high fever and rashes, and he cried incessantly. As a precaution, his pediatrician decided to give him a second round of vaccinations. This wreaked enormous havoc on his little body. Christopher was miserable and very sick and continued to cry incessantly. As a new mother, my heart was broken; it seemed almost impossible to make our little one smile.

The first few years passed. He babbled and said few words. At three years of age, he had a minimal vocabulary. By the time he was four years of age, the ear infections and the bronchitis/pneumonia episodes finally began to diminish. But now there were learning issues to address.

At age three, Christopher was placed in Project Launch and later, the Early Childhood programs of the school district. He was mainstreamed in the first and second grades with special aides, but there were obvious difficulties in learning, especially with the open classrooms, and the decision was made to homeschool him.

Various evaluators within the school district diagnosed Christopher as having Pervasive Developmental Disorder. In the meantime, Christopher was also taken to an independent neuropsychologist and audiologist who disputed the PDD label, and claimed instead that the difficulty in learning was the result of all the years of ear infections. She gave him a different label of ADHD and pointed me in the direction of an allergist.

Christopher was then taken to several doctors to evaluate him for allergies. Eventually he went to a Chinese doctor and homeopath for several years to treat him for candida, vaccinations, lead poisoning, allergies, and for over-usage of antibiotics.

Christopher was also taken to a DAN (Defeat Autism Now) nutritionist who put him on a strict diet. He also prescribed chelation.

At around age 7, Christopher began having facial tics. These began with the mouth. Later on, they became eye tics. Several years later, the self-stimming became more prominent. There was a lot of spinning, finger and hand flapping, and arm waving. The loud clapping began; often times it would be done right next to my ears! He made up a word and said it a million times a day. He’d “scribble” in the air with his finger. The stimming would change from one thing to another, and they included mouth noises, snapping till his fingers bled, talking to himself, and so forth. At this age, Christopher seemed to almost never get sick. But it was obvious that other things were going wrong.

The OCD developed. Christopher developed an obsession with the computer and his games. He could never go anywhere without caring a container full of computer game boxes. He had the same obsession with photographs. He would line them up and cover the entire family room floor with photos.

In the meantime, the homeschooling continued, but there were constant problems with inattentiveness, hyperactivity, poor short-term memory, auditory processing, sensory integration dysfunction, and manipulative behavior, among other things. The biggest challenge was that Christopher seemed to have very little curiosity or desire to learn about the world around him.

And then, one day, all of this turned around when one of the specialists seeing Christopher recommended that we look into NACD.

After researching their website, I eagerly made an appointment to take Christopher in for an evaluation. Words cannot express the excitement that I felt to FINALLY be given a ray of hope for our child. After trying so many different avenues of doctors and therapies, we were able to implement something that made complete and total sense!

With great fascination, I learned all about the neurological organization of the brain. What a relief to have the support of an astonishingly intelligent and caring group of individuals, and to know that they truly cared, along with his parents, about our child’s success! Following the program meant an enormous amount of commitment on my part, and I found it to be a huge blessing to be able to include this in our homeschooling program. This simply became such a wonderful way of life for us.

We learned so much!! How exciting it was to know that we were working towards building new connections for the brain cells! How encouraging to realize that sensory and motor pathways could be created with the proper stimulation of frequency, intensity, and duration! It made a lot more sense to me to be able to do this within the home every day instead of driving all over creation to visit various doctors and therapists.

One of the most important details that I learned was to do away with the labels and diagnoses. I personally had received about five different diagnoses for Christopher from as many well-meaning professionals. The leaders of NACD reminded me that these diagnoses didn’t matter. What was most important was building up strengths in all the different areas of development. It didn’t matter if a child had special needs, developmental delays, or special gifts. Each one had the ability to grow by leaps and bounds.

I was ecstatic to receive the support of NACD. For many years I had gone round and round in circles and felt frequently overwhelmed. It was so encouraging to feel so understood, and to have their support in writing up the program and lesson plans.

It took months and years of hard work, and we knew that Christopher’s brain was going through many positive changes. He eventually was able to establish his natural dominance. He could be touched without screaming with pain. He was able to master long digit spans easily. He became more pleased with himself and proud of his newfound abilities.

Where once he had great difficulty focusing, he was able to listen more, remembering details, as with directions. His stimming behavior diminished and eventually disappeared completely.

Discovering and learning the NACD philosophy, and then implementing it within our family was the pivotal, most important event in our lives. It has had such a tremendous and positive impact on me and my entire family. I am extremely grateful to this organization, and I carry enormous respect and gratitude for the caring individuals who help run it.

Today, Christopher is a wonderful, well-adjusted 29-year-old young man. He lives a simple life, still at home with his mom, and works part-time at Randall’s. He has an immense love for music and carries close to 50,000 songs on his iPod. Those who know him describe him as extremely friendly and talkative. He is pure joy and love. He has enormous confidence in himself and is almost always happy. He is a beautiful soul.

One day recently, his father had taken him out to eat. Christopher was in his usual happy-go-lucky mood, and his dad was having a bad day. Curiously, his father asked him, “Son, why is it you are ALWAYS so happy??” Christopher looked at him with a smile and simply said, “Because I CHOOSE to be happy!”

We are convinced that he has been sent here to teach all of us around him about love and compassion, patience and tolerance, and happiness! This, to us, his family, is the greatest measure of success.

NACD Newsletter, April 2018 ©NACD

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My pregnancy was normal, c-section delivery was normal, and we took home a normal, beautiful, black haired eight and a half pound baby boy. Marcus progressed normally with physical milestones, but we didn’t get the language development. Also, food issues arose. I couldn’t get him to eat regular baby food. When we took him off the bottle, he refused to drink milk from a cup. Only water. Finally, he would eat some organic baby food. We began to have behavior issues. Our pediatrician referred us to a rehabilitation center in town for evaluation when he was eighteen months old. We even went to an ear, nose, and throat specialist for tubes in case it was his hearing. Marcus began attending a language development preschool at the rehabilitation center when he was twenty-three months old. My mother called it “obedience school” and in many ways it was. He needed it. We were on a waiting list for private speech, and we even started occupational therapy. Marcus was a handful, but thankfully he was a good sleeper. Also, I was fortunate to have a good day care situation and the support and help of my wonderful mother. She would pick up Marcus and take him to preschool and the sitter so I could continue to teach.

At three our doctor sent us to the Meyer Center in Houston for a developmental evaluation. The news we received was devastating. Marcus was diagnosed with a communication disorder with autistic qualities. The term pervasive developmental delay was presented to us. Worse case scenario we were told was when he was sixteen he would be mentally eight years old. We were told to continue what we were doing and come back in a year for a re-evaluation. When we returned home, the preschool teacher and speech teacher vehemently disagreed with the worse case scenario, and did not want us to give up hope. Marcus was saying a few words and had some splinter skills. But, he hated change of any kind, loud noises made him shake all over, foods were a real issue, he wouldn’t look at you, and when eating out he might end up on the floor under the table. Haircuts were a real trip, but luckily I found a very patient barber. Cutting his fingernails and toenails required my husband holding him down with me doing the cutting. If something upset him, he would go to the floor and want to repeatedly bang his head. Toilet training was a major issue. I begin to pray, “God, if only we can get him toilet trained, I won’t ask for anything else.” The last thing I would think of when I was drifting off to sleep was “I have an autistic son. What am I going to do? The future looks horrible for him, my husband, older son, and me.” The first thing I would think of when I woke up was the same thing. A weighted pall hung over our household. I can see why couples who have special needs children many times will divorce because it takes such an emotional toll on the whole family. Oddly enough, our older son, who was ten years older than Marcus, was in the gifted and talented program at school and was an excellent athlete. We were operating at opposite ends of the spectrum. I learned to not think so far ahead because it frightened me so. It was at this point that Donna, our speech therapist, began to talk to us about NACD. She had a young deaf client who worked with NACD. She gave me some information, and my husband and I began to read. We were so encouraged by what we read, I called and talked to Lyn and ordered the tapes and the referral forms. My husband and I would listen to the tapes on the way to work in the mornings. That seemed the best time to have a few minutes with no distractions. I filled out the forms and sent them to Utah, and waited for an evaluation appointment with Bob. Marcus, my husband, and I flew to Utah for our evaluation. We were given specific things to do for Marcus. It was so exciting to actually have specific things we could do to help our son. It was hard, and Marcus didn’t like some of the things we did, but we persisted. We did a video evaluation at three months, and then flew back at six months to Utah. Our plane was delayed out of Dallas, so we needed to kill some time and eat. A Friday’s restaurant was at the airport terminal, and it was noisy. My husband and I looked at each other and said, “Well, do we try Marcus with the loud noise?” We actually walked in, the hostess seated us, we ordered, we ate, we paid our bill, and we walked out WITHOUT an incident. That was the first time. We had been on Somonas Sound therapy at that point for a while as well as program for six months. I will never forget that defining moment. We were thrilled to learn that a NACD regional office would be open in Texas. Working with NACD was something we most definitely wanted to continue.

That has been almost eight years ago. We’ve climbed many mountains, and we still have mountains to climb. Marcus is in the fifth grade and is and has been in the regular classroom along with special education classes since kindergarten. We refused for him to be in an autistic classroom. I told the twelve people in the first ARD meeting on Marcus in kindergarten that Marcus had to live with us in the real world, and if I had to drag him kicking and screaming into it, he would become a part of it. We requested and got a personal aide for him with the understanding that the goal was eventual independence. We were blessed with a wonderful aide who was with him from kindergarten through fourth grade. She continues to do private tutoring with him each week. She loves him, and he dearly loves her. Our work with NACD has also provided us another evaluative source to use with the school district. With a special needs child, it is always good to have your own sources outside of the school. My husband and I feel without NACD we would definitely not be where we are today.

Well, you ask, where are we today? Marcus is in the fifth grade at a large intermediate school in our city. I was a nervous wreck about the change to intermediate school. I laid a lot of groundwork with getting things worked out, but he has done pretty well. At the beginning of the year I moved him out of resource reading and into the regular classroom, and at semester I moved him out of resource language into the regular classroom. Those two classes were the last special education classes he was in. He has a wonderfully supportive regular education teacher in those classes. He is allowed some modifications and Content Mastery support as needed. Communication with his teachers is paramount, and I do not hesitate to ask things or make requests of his teachers. However, they know that I will do anything to help him be successful in their classroom and to help them help him. It is a partnership. He has played on a soccer team since he was five. He plays baseball and has even pitched an inning and gave up no runs and struck out one. Marcus takes piano lessons, and he has even played two memorized pieces in the school talent show. He has no qualms about performing in front of a group. Golf is probably his best sport, and it is one he shares with his father, brother, and mother. He can chip! Marcus takes art lessons, and has experienced some modest success. He won third place in our community art show in grade five. If you ask him if he wants to take a trip, he is ready to roll. He loves to travel, and being so visual he just soaks things in. He has been to twenty-five states and to one foreign country. He plans to collect all fifty states on his travels. He is a joy to travel with these days, unlike the first trip to Florida he spent on the floor of the plane in front of our seats kicking and screaming until he fell asleep. He even was elected to the student council in fourth grade. He ran in the fifth and lost, but he handled it beautifully. He acolytes at church and does it like a pro. He has had two large, successful birthday parties at a bowling alley. Our biggest problems to date are still language issues, social issues, and voice volume. These are challenge, but we are working on it. Plus, all are so much better than they were. Marcus is still a work in progress, but then all kids are. He is happy, moving forward, and we continue to stretch him as much as possible. Math is his strongest subject, but he loves history too. His reading is moving along, too. I am a firm disciplinarian. I mean what I say and I say what I mean. Marcus knows that I will deliver on consequences as well as rewards. I am very consistent in the discipline area. This has been very important to his progress. He wants to please and do well.

We’ve been blessed with wonderful people to help us in our journey with Marcus. He is truly a “village” project. NACD gave us the hope and tools to work with our son. Marcus’s baseball coach, who happens to be a psychologist that teaches at a university nearby and does consulting and evaluations of autistic children with some area school districts, has told us that Marcus does better than 85% of any of the autistic kids he has ever seen. It has been a journey, but a journey that isn’t over yet. We still have many mountains to climb, but I don’t think they are quite as high as where we have been.

Reprinted from the Journal of The NACD Foundation (formerly The National Academy for Child Development)

For an update on Marcus please go to: https://www.nacd.org/autism-spectrum-marcus-ten-years-later/

Reprinted by permission of The NACD Foundation, Volume 17 No. 2, 2004 ©NACD

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Let me begin with a brief history of our experience with children within the autism spectrum over the past several decades, for doing so will give you a better understanding of the significant “pieces of the puzzle” we are working with in regard to what we know thus far about the autism spectrum and how our ability to effect change in these children has evolved. It is important for parents of children within the spectrum as well as professionals working with them to have knowledge of and a working context for the various significant “pieces” that affect how well we do with these children.

I first began exploring autism in the 1960s. At that time, autism was actually referred to by a different term. Called “childhood schizophrenia,” autism was considered to be a psychiatric problem. The leader in the field at that time, a man named Bruno Bettelheim, perceived autism as a psychiatric disorder caused by what he referred to as “refrigerator mothers.” He blamed it on the mothers. Fortunately, we have come a long way since then in understanding children with autism and their related problems. But those of you who are struggling now and having a tough time with your kids can imagine how horrific it was in those days – trying to handle these children while everyone essentially thought “the mother did it.”

We moved past that theory in the late sixties and early seventies, thankfully, due to the work of one man. His name was Carl Delacato. In 1970, Carl let me read a manuscript of a book he had written called The Ultimate Stranger. Carl Delacato was the first to perceive children within the autism spectrum as having sensory issues. He was also the first to perceive that these sensory problems were underlying the behavioral and developmental problems the children were displaying. At that time, remember, autism was believed to be a psychiatric problem, and the only treatment methodology that existed involved data-based behavior modification programs and skill-based training programs. Prior to reading Carl Delacato’s manuscript, I had traveled around the United States and studied under the people who were the leaders in the field at that time. I had learned how to design data-based programs and supervise them, and worked at trying to develop skills with the children. It was an extremely frustrating time because we were not doing anything to significantly change what was wrong with these children. The prevailing philosophy, unfortunately, was not unlike the philosophy of a lot of people within the system to this day — which is that you cannot produce significant change in the underlying disorder, about all you can hope to do is teach the child some different skills.

It was Carl Delacato who opened the door to understanding how to “fix what was broken” in the autistic child. Most of you reading this now, even if you are not familiar with my organization the National Association for Child Development, are aware that children diagnosed within the autism spectrum have sensory issues, and you are aware of “stimming.” All of that started with Carl Delacato.

In the early seventies, we formed what we called The Autistic Unit. We began working with autistic children with the understanding that they had various sensory issues underlying what was going on functionally. We began working with the sensory issues specifically with the intention of effecting change in the child’s functioning.

At that time, we had a rude understanding of what was going on. For example, we knew that the children were sound sensitive; however, we did not have a clue as to what to do about it. Our only treatment technique for hypersensitive hearing at that time was plugging a child’s ears. And, most of the other treatment techniques at our disposal were not a lot further along than what we did for the auditory issues. Nevertheless, the first breakthrough in the field had been achieved, for we now understood the problem of autism as being a neurodevelopmental, sensory-based problem, not a psychiatric problem.

The next significant breakthrough came through our experience with NACD. In working with so many children over time, we gained a better understanding of the specific sensory issues we were dealing with, and we started developing treatment techniques. We found patterns emerging that were typical in a majority of children within the spectrum.

First of all, in regard to vision, the peripheral vision tended to be hyper and the central macular vision tended to be hypo. The original perception that autism was a psychiatric problem was due largely to the fact that autistic children tend not to make eye contact. Well, if you understand their visual issues, you then understand why they do not tend to make good eye contact. It is because they are using theirperipheral vision, not their central vision (their central macular vision). Getting a handle on the visual issue was significant. Once we really understood what was going with the vision, we were able to start developing treatment techniques to change the visual problems by developing the vision properly.

In the area of tactile function, we discovered that most of the children had hyper surface-tactile sensation and hypo deep-tactile sensation. Going back again to the original perception of autism being a psychiatric disorder, we see how the tactile sensory problem lead to such a belief. As many of you have discovered, when you lightly touch these children they tend to reject that touch, but if you touch them very firmly, they tend to like that. It was the children’s objection to surface-tactile sensation that further lead observers to label them as having a psychiatric condition. Upon identifying this sensory problem, we started working on developing techniques and methodologies to modify the tactile function.

In regard to auditory function, we discovered that many of the children had problems with overstatement of some frequencies of sound. They were hypersensitive to specific frequencies and hypo-responsive to other frequencies, so some frequencies of sound were overstated and other frequencies were understated. The human ear can process about 20,000 different frequencies of sound. Currently in our understanding, it appears there are very narrow bands of frequencies where the kids are hypersensitive and, right next to these bands of overstated frequencies, we will find a narrow band of understated frequencies where the kids do not respond well enough to the sound. These auditory issues obviously make it difficult for the child to develop receptive language and very difficult for them to develop expressive language.

The following chronology will give you an idea of the process we go through in identifying and developing treatments for sensory issues. Back in the mid-seventies, I was working in Europe and discovered a practitioner there, an ENT in Paris named Dr. Tomatis. I traveled to Paris and then met with some practitioners in Spain who were doing his work. Dr. Tomatis was the first one to try to change specifically the hearing of children within the autism spectrum. I started referring kids to Dr. Tomatis and did so for a number of years. I then met Patricia Joudry, a lady who had studied under Dr. Tomatis. Working out of Canada, Joudry had developed audiocassette tapes designed to modify the hearing of the kids. We employed her cassettes with approximately five hundred children and saw some changes with quite a few of them although nothing near what we were hoping to achieve. At this point, one of Dr. Tomatis’ associates, Dr. Berard, started coming to the United States and brought with him a piece of equipment. I sent staff out to study and be trained in the use of Berard’s equipment and methods. We then applied the Berard approach to many of our children. When further development yielded a modification of Berard’s equipment, we trained in using the new equipment and utilized it with the children. Subsequently, we found a program out of Germany called Samonas, and we used that. We used most of these techniques more than any other practitioner in the country, and, in some cases, more than all the practitioners in the country. The last step in this progression of seeking out auditory training techniques that work is “The Listening Program,” which we helped develop, and which is still undergoing development. Finding better and better techniques and methodologies to address all of the sensory issues is an ongoing process at NACD.

One of the frustrations we encounter in the work we do with children within the autism spectrum is the fact that the world at large is just beginning to understand that these children have sensory issues, and frequently the perception is that the children are all the same. For example, one of the most common treatment techniques is brushing. Along with brushing comes the perception that the children are tactually defensive, which is a bit of a misnomer because, yes, there is some surface sensation that is hyper, but the deep sensation typically is hypo. We say “typically,” again, because not all children have these issues, and they have them to varying degrees and in varying combinations. Really, the success of treatment is largely dependent upon understanding each specific child and how the various issues are manifested in that child. We must make sure the treatment techniques and methodologies used address the specific child and theirspecific needs.

For the almost thirty-five years of my work in this field, and the twenty-five years of NACD’s existence, we have been constantly developing and modifying our treatment techniques. I tend to go crazy when I hear someone say, “Oh, this is the way you do it, and any other way you do it is wrong.” Such a statement is so far from the reality of what is going on that it is ridiculous. The process of discovery and development is an ongoing quest, and we are constantly searching and finding ways to do things better.

The next substantial breakthrough in our understanding of the problems involved in autism came with the discovery of the significance of sequential processing. “Sequential processing” refers to a person’s short-term memory and working memory, which is the foundation of organization in the brain that permits them to think. When we begin to address a child’s sensory needs and begin to normalize their sensory channels, we must also develop their sequential processing. This is a huge factor in whether or not a child will progress significantly. Many if not most of our parents with children on an individualized NACD program are working to some degree to advance their child’s sequential processing.

If we look at the spectrum of children we deal with to determine the range of impact between those with the greatest severity of difficulties and those with the mildest involvement, where a child falls within that range is largely dependent upon the degree of sensory dysfunction the child has and the level of sequential processing the child has mastered. For example, if we have a child with severe sensory dysfunction who also has extremely poor sequential processing, we have a very, very severely involved autistic child. If we have a child with minor sensory issues and with reasonably good sequential processing, then we have a child at the upper end of the spectrum that may be labeled as PDD or even ADHD.

By successfully addressing and improving the degree of sensory function and sequential processing in each individual child, we have many, many children who move up the spectrum. Our understanding is that if we are doing the right things, children should move up the spectrum. I recall one child whom we saw out of Texas. When we first met her, the school district had labeled her as severely autistic. After we worked with her for three months, the school re-did their testing and said, “Oops, we made a mistake. She’s not severely autistic, she’s just mildly autistic.” We continued working with her for another three months, and the school district reassessed it and came back and said, “Oh, we made a mistake. She’s not autistic, she’s PDD.” To make a long story short, they reassessed this child every three months, and she went from severely autistic to autistic, to mildly autistic, to PDD, to ADHD, to learning disabled, to typical, to gifted. The last time I talked to the family, they informed me their daughter was in the gifted program.

How the children move up the spectrum is largely a reflection of the normalization of the sensory channels and the progression of the sequential processing. To help illustrate this a little better, consider the effects of the various levels of sequential processing on a child’s behavior and ability to function. Children who cannot process one piece of information well (such as a simple, one-step direction like “clap your hands” or “touch your nose”) are typically the children who are in a severe state of dysfunction. They are generally engrossed most of the day in sensory play simply because the child cannot think to play, cannot think to interact, cannot think to communicate. So they are in a very low state of neurological organization. Their global neurological functioning is that of a child who is not yet a year old. Such a child, who has the processing of a child who is not yet a year old and is totally engaged in sensory play, is in a very severe condition.

If we move up the spectrum a little bit to a child who processes one piece of information well, you start seeing global changes in them. These children begin to connect with their environment. You still tend to see severe sensory play; the children are still typically very perseverative; their attention span is fleeting at best; they may be throwing out a few spontaneous words that may or may not have any connection to what is going on in their environment. At this point in time, their thought process is virtually entirely visualization. They are thinking in pictures and not in words.

As we move up and get the sequential processing up to two pieces of information, we start seeing the children respond more to people in their environment, and we see them interacting in general with their environment a bit. They are still typically involved with a lot of sensory play, with a lot of perseverative things still going on, and at this point the child is still largely a visualizer. Here at the sequential processing stage of “two,” you often seen the children doing a lot of tantruming. Often the tantruming has to do with their visualizing what they think should be going on, and, if what is in fact happening does not fit their picture, the kids are disoriented and sort of freak out. Also at this point, you start seeing them using some functional language – some single words and the ability to begin chunking some words together.

We move up to the next stage where the kids are sequencing three pieces and we start seeing significant improvement in their interaction. We start seeing some appropriate play. We see the child trying to take some control over their environment. We also see what we call “lock and block” behaviors. This refers to children’s tendency to participate happily if they perceive what you are doing as play, but if they perceive what you are doing as “work” or “therapy,” they tend to just “lock up” on you and refuse to participate. At this point, they are still strong visualizers. Often at this stage we see the initial development of conceptualization, meaning the child is beginning to think a little bit in words. Also, when they are sequencing three, we typically see an increase in functional language to where the children are using phrases and sometimes even initial sentences.

When children start sequencing at the level of four, we see them really begin to integrate into the family and get involved in some other social environments. We see them get involved in imaginative play – to a fault, actually. At this stage, many of the children visualize very strongly. They will visualize videos and use what we call “video speak” where they will communicate using lines they have learned out of the videos.

One of the challenges we face in effecting change in our children within the autism spectrum is that when a child remains too long at any one level of sequential processing, they start developing strong habits, and it is difficult to move them out of it. With a typical child, change is rapid, and change is the norm. Typical children not only welcome developmental change, they seek developmental change. They work hard to learn to walk and work hard to learn to talk – they want to push onward. Unfortunately, one of the problems with our children who have developmental issues is that, because development is so slow, they can become very comfortable right where they are currently. Often, after you “put the pieces together” – i.e., you are successful in helping a child improve their sensory issues and increase their sequential processing – you almost have to drag them forward to make them utilize the neurological function you have helped them develop. For example, I have had some children in whom we have put together the pieces that would permit them to walk, and then it took another year before we could convince them that it was a good idea to do it! So another one of our challenges with children in the autism spectrum is that their comfort zone is typically right where they are, and we have to work hard not only to put the pieces together but to almost force their advancement by getting the children to utilize their newly developed capacities.

One of the big breakthroughs many children have occurs when we get sequential processing to a level of five. This is when we see a great increase in significant periods of engagement and interaction, and the children tend to communicate a lot more. When they are still at five, however, they tend to be rather self-absorbed and focused. Often they tend to have low intensity relative to what we may be working on achieving developmentally or academically. If we look at these children objectively, regardless of their chronological age, we see them functioning at a level normal for a five-year-old. Five-year-olds are not terribly motivated to do academic work or do work of any kind, you know – they want to play. At a sequential processing level of five we are getting there, but it is when we get above five that the world changes for these children. We can move them along toward normalcy pretty quickly after that.

A lot of you who are working on sequential processing get a little confused in that the methodologies being used to try to change the sequential processing often produce apparent results that do not necessarily match the function of the child. For example, you may have a child who can apparently sequence three pieces of information but, functionally, is more at a level of two. Typically, the reality is that the sequential processing is actually at two, not at three. The children use various mechanisms – particularly strong visualization – to “cheat the system”, if you will.

One of the more significant factors we can use to determine where a child is globally in regard to processing is to measure the reversesequential processing. To display reverse sequential processing is to do the equivalent of listening to a number sequence and repeating it backwards. Again, children who are strong visualizers can cheat this system as well. They can picture the numbers, letters, words or objects – whatever it is you are sequencing – and visualize it “looking” at their picture backwards. So, when we as a staff assess your child to determine the level of his or her sequential processing, we are going to look more closely at your child’s global function than we will the actual performance of sequential processing activities.

The fourth breakthrough in our understanding of children with autism involved getting a good handle on the significance of sensory play. Although for many years we viewed sensory play as being a negative thing, and we saw how sensory play was engaging the children to a point where they were not developing other functions, it has been in the last few years that we have come to understand just how negative sensory play really is. I now refer to sensory play as “debilitating sensory addiction.” The term “debilitating sensory addiction” accurately illustrates the significance of the problem these children have in regard to sensory play.

Recent research reveals that when these children engage in sensory play, their brains react the same way a brain does to a drug addiction. As with any addiction, the brain tends to seek out that which makes it feel good. Essentially, when the kids engage in sensory play (or “stimming”), what is happening is that the brain is producing endorphins, which are feel-good brain chemicals. The more the child engages in the sensory play, the stronger the addiction becomes. The stronger the addiction is, the more the child becomes absorbed in getting the “fix.” Eventually, the brains of these children are not particularly interested in doing anything other than getting the fix. In recent years we have come to realize that, for many of the children, unless we can dramatically decrease the time in which they engage in sensory play, our odds of producing significant developmental change are lousy. Debilitating sensory addiction can be so devastating that I have had families report to me things like having left their child with a babysitter for two hours and, immediately upon returning home, they became painfully aware that the babysitter let the child stim for the two hours, after which it took the family two weeks to get the child back to where they were before the babysitter walked in. Or, parents describe leaving kids for the weekend with grandparents and then finding it takes a month to get the children back to where they were. Therefore, redirecting the children to stop the sensory-addictive behavior is crucial. The closer we come to stopping those behaviors for the child’s waking day, the faster the child is going to break out of the addictions, and the faster we are going to start normalization of the sensory channels.

In order to stop these addictions we must decrease the frequency of the behavior. We also have to work at normalizing the sensory channels because the stimming behavior – or sensory behavior – essentially amounts to “playing with what is broken” in the sensory channels. The child who is flapping their hands is playing with their peripheral vision. The child who is spinning things is playing with their peripheral vision. (The peripheral vision picks up movement in edges.) The child who is making funny sounds and playing with tonality is playing with frequency issues with their hearing. We need to work at normalizing their vision and their hearing. If they are engaging in tactile play, we need to normalize that. We have to cut down the frequency of the addictive behavior, and we need to work on normalization of all the sensory channels. We also have to work on developing sequential processing. In a child with low sequential processing, if you stop the addictive behaviors and work on normalizing their sensory channels but do not yet have sufficient sequential processing to allow the child to engage in any appropriate behavior or any appropriate play, then all they are left with is sensory play. To help you understand that a bit: All babies engage in sensory play because that is all they can do. You watch babies and they are rocking back and forth, they are sucking their thumbs, they are looking at lights – they are, in fact, stimming. They do that until they develop neurologically to a point where their sensory channels are working better and to the point where they start developing processing abilities that allow them to perceive and interact with the environment on a higher level. Once we get the processing going, we have to specifically teach the kids how to engage in appropriate behavior – how to play, if you will. To move them on through this sensory addiction, we have to put all those different pieces together for them.

The next big breakthrough – the fifth breakthrough – was understanding the significance of visualization and conceptualization. Virtually all children begin life as visualizers, meaning they think in pictures because they don’t have language. If you don’t have language, you think in pictures. Now, in a typical child where language is starting to kick in after nine months or twelve months or eighteen months, by the age of two years language is developing pretty well. What happens at this point is that the child starts developing a balance between visualization (thinking in pictures) and conceptualization (thinking in words). Imagine you have a child for whom the language of a typical two-year-old has not kicked in at five years old. That child has had five years to develop superior visualization skills. That child is thinking incredibly well in pictures.

Many of you are aware that your kids can watch a video a few times and have the whole thing memorized. Many of you will observe your children’s eye gaze going up and to the side, and they are watching videos in their minds. Occasionally they will let a line from the video slip out verbally, which is how you know where they are and what they are watching in their heads. They are very, very strong visualizers. One of the challenges becomes how to get language out of a child who thinks in pictures, and how to get increased developmental function and thinking and conceptual thought from a child who thinks only in pictures.

One of the things I have been doing for years is trying to crawl into children’s heads, figuratively speaking, and attempt to look at their functioning, and through their functioning get a feeling for how they think. To understand how they think, again, you must understand what they are perceiving from their environment with their loused up sensory channels; how many pieces can they think in (their level of sequential processing); and whether they are thinking totally in pictures or are thinking a little bit in words – what that combination is. If you really watch the children closely, you can get a pretty good idea of how they are functioning. A little experiment that you might want to do to help understand the significance of conceptualization – thinking in words – is to walk around the house and say to yourself over and over and over again nonstop – something like “No words, no words, no words, no words.” What you want to do is not permit yourself to think in words. As you are walking around the house saying to yourself, “No words, no words, no words,” look around, observe what is going on, but try to take your thoughts some place. It is not easy! If you cannot conceptualize, you do not have the ability to take your mind somewhere you would like to go. Without words, your thoughts are visual thoughts, and your thoughts are driven by visual impressions.

Often, our children tend to say things that are a bit bizarre – you know, they say something and you ask yourself, “Where did that come from?” Often where that comes from becomes clear if you understand that the child is visualizing. Something in the environment – the image the child is seeing – triggers the thought. For example, when Mom comes out in the morning and she is wearing something she wore two weeks ago, the child looks at Mom and his mind goes to the pictures and images of what occurred two weeks ago. It is extremely limiting. But for the children who do it well, they are very happy living there. This is not hard to understand, really. If you’ve got a child who visualizes very well and perseverates with videos, he walks around with his whole video library in his head all day, and he just “goes there” in his mind. With a lot of your kids, when they start playing with toys, the toys they tend to go to are characters that are in their videos, and they use the characters to act out the videos. I heard on PBS recently that there is a new line of toys coming out that will package videos with dolls matching the characters in the videos. These character dolls are designed to pick up information from the videos. Imagine you have one of these dolls sitting there next to the child watching the video, and on the video the same character says, “Let’s go play ball.” Then all of a sudden the toy sitting next to your child says, “Let’s go play ball.” This is something I hope none of our children with sensory problems ever come across because it is going to make their dependency on visualization worse than it already is.

Again, the visualization is very, very limiting. One of our big challenges is to develop conceptual thought and develop language function in these children who are such strong visualizers. Often what we have to do is severely cut back and limit the visual information they are taking in, and turn their world into an auditory-conceptual world where we are talking to the children all day so that they are processing language, language, language. We cut out the videos, we cut out pictures, often we cut out books, and we turn their world into a conceptual, language-based world.

To summarize how our understanding has evolved in the last twenty-five to thirty years, there are five main breakthroughs that have occurred. The first one was the realization that for the children within the autism spectrum the basis of their problem involves sensory issues; it is not a psychiatric problem. The second breakthrough was understanding the specifics of their sensory issues and developing treatment techniques to help normalize the sensory channels. The third big breakthrough was understanding the significance of sequential processing and developing methodologies to improve the sequential processing. The fourth breakthrough was understanding the significance of sensory play, which we now are calling “debilitating sensory addiction”, and how important it is to stop the addiction. The fifth breakthrough was understanding the role of visualization and conceptualization and the tremendous need as we progress with the children to change that balance and make the children greater conceptualizers, thinking in words rather than pictures.

We have come a long way with this. Obviously, we have a long way to go yet. Some of the children are doing fantastically well, some are doing fairly well, and some of them are really, really tough. Sometimes the tough part is simply implementing what we know needs to be implemented. When we say to stop your child from engaging in sensory play every waking moment of the day, that is not an easy undertaking. So we have those frustrations. However, we are certain there are pieces yet to be discovered which are going to help us advance our understanding even further.

An interesting new development at NACD is that last fall I placed a full-time researcher on staff. Dr. Nagle’s job is to explore, research and discover anything out there that may help our understanding of these issues. Our biggest frustration relative to that task thus far has been that there is not a lot out there that is being of much help. It appears that, in general, we at NACD are approximately twenty-five years beyond where everybody else is in terms of understanding these problems and issues.

At NACD, we continue our ongoing quest to gain understanding of the issues relative to the autism spectrum, and we have a number of projects currently underway. In regard to understanding just the issue of visualization and conceptualization, we have been researching what studies have been done and information gathered as to how deaf people and blind people think. Obviously, if you are deaf since birth, you cannot conceptualize/think in words; and if you are blind since birth, you cannot visualize/think in pictures. Thus far, it appears no one has researched how these processes are different within this population than they are within the typical population. We are continuing to explore this. We are also particularly looking into areas of physiological understanding. We are looking at normalizing the sensory channels better. We are also developing our own research strategies and projects to further increase our understanding.

One area that probably gets more attention than anything else relative to the spectrum is the subject of physiological issues. This is interesting. I look at the agenda of various workshops being done on the autism spectrum and find almost everything is directed to the physiological issues. Now, let’s put some of these things in perspective. One of the primary things to understand when you are dealing with disorders within the autism spectrum is that they are really not unique. The perception tends to be that all these children share the same disease, or different degrees of this disease, and that it is a unique disease. Well, it is not. Virtually every child who has a developmental issue shares some if not most of these problems. The issues I am referring to are problems with delayed development, sensory play, problems with sequential processing, and problems with visualization/conceptualization. We do not find brain-injured kids and kids with cerebral palsy who do not have these issues to varying degrees. A huge number of children within the Down Syndrome population have these issues. Virtually every child with any kind of genetic developmental issue has some of these same problems. These problems are not unique to the kids with the above labels. It is really important to understand that. The widespread perception is that if we really get a handle on what is broken physiologically, we are going to see immediate change in these children – but we don’t.

We are in a very unique position in NACD in that we are constantly watching what is happening in the field of treating children within the autism spectrum. We see children from all over the country, we see a significant number of children from other countries, and our families tend to be the most aggressive families on the planet relative to seeking out what works for their children. Virtually everything available out there is being tried by our families. We typically have a caseload of 350 children within the autism spectrum. As a staff, we are approaching all of these children the same way. We are reviewing our results together, we are modifying our protocols together, we are working in the same direction, and we are sharing all of this data with each other. Three hundred and fifty children is a lot of children, and our caseload of children within the autism spectrum has been that large for probably the last five years. Prior to that it was smaller simply because there weren’t as many children with autism, but the population has always been very, very significant. We see lots of children – which results in lots of data. And we are gathering lots of data relative to the results we are seeing with the various physiological interventions gaining popularity today.

I mentioned in the seminar on “Frequency, Intensity and Duration” the analogy of the inner tube. I compared the work with our children to pumping up an inner tube, and that if we are dealing with physiological issues and neurological issues, we equate those issues with leaks in the inner tube. Certainly the physiological issues create leaks in the inner tube. But, one of the things we caution against, because it is what we are actually seeing, is that often the more aggressive the physiological treatment is, the more leaks develop in the tube. Be cautious. Watch and see what changes you perceive in the child as you are implementing various treatments. If we have one word to describe our kids physiologically, that word would have to be “sensitive.” They are sensitive to what they eat, they are sensitive to the change in the phase of the moon, they are sensitive to how they slept, they are sensitive to toxins in the air, toxins in their food, certainly toxins in their immunizations. They are sensitive. Every intervention we tend to do physiologically tends to be something that is rocking that boat; so, again, we need to be extremely cautious in how these things are applied.

At NACD, as we examine the various physiological interventions being tried, and we gain more and more understanding of what is working and what is not, we are leaning at this point toward a truly holistic approach. We advocate working with each child to establish a strong healthy body with strong, healthy cells that can do what they need to do to override these problems.

When we look at the spectrum from severely brain-injured and hurt children up through children with learning problems, up through typical children, up through gifted and accelerated children, we find that the lower we are in the spectrum, the greater the sensitivity is to physiological issues. The higher we go up the spectrum, the less of a problem we see. In our severely brain-injured children, our greatest challenge with them is simply keeping them alive. As we move up the spectrum and get up to our gifted and accelerated children, typically that population can eat anything, can sleep or not sleep, and they still function well.

Neurologically, the brain controls everything that is going on. The better the global neurological function is, the less sensitive the system is. So, for children within the autism spectrum, particularly the children at the lower end of the spectrum, I urge you to perceive them as being very, very physiologically sensitive. I caution you to go slowly and be very careful about how much you are trying to do.

In closing, my perception is that the remaining answers to how to address this problem better are hidden in our children. As we continue to see more and more children within the spectrum, the more data we collect the better our understanding is going to be. In the last few years, our understanding has increased tremendously. My intention is that we continue on that path. I encourage our families to keep us informed and apprised of everything you are doing, everything you are hearing, and everything you are seeing. And we at NACD will continue to gather the data, glean the information, and improve our understanding of what the significant factors are and what we need to change.

With what we know today, we should be able to produce significant if not dramatic change in the vast majority of children within the autism spectrum. Fortunately, we already have many children at this point in time who have moved out of the spectrum completely. We expect this will continue to happen. It is not easy. It is not typically fast. It is, for sure, never as fast as any one of us would like to see. But, for the most part we have a handle on many of the crucial issues. If we are all mindful of what the pieces are, put the pieces together, and apply the techniques and methodologies of the program within a global understanding of what we are trying to accomplish, we can help our children do extremely well.

Reprinted from the Journal of The NACD Foundation (formerly The National Academy for Child Development),
Volume 17 No. 1, 2004 ©NACD

Adapted from telephone seminar “The Autism Spectrum,” March 17, 2004

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