Tag Archives: autism

Nine-Year-Old “Autistic” Child Spurs Community to Build Inclusive Playground

Lucas Fritsche – My Hero

by Bob Doman

I needed to write this story about my nine-year-old hero, Lucas Fritsche. Lucas exemplifies what can be, what should be, and what needs to be. Lucas’s story is one of a committed and proactive family, therapists who knew this child needed more than what they could provide, a school that learned to work with and assist a family, and a community that was willing to help and to listen.

I first met Lucas and his family in 2014. Lucas came with a bit of a “rep.” In preschool he was notorious for biting someone daily. When he started with NACD, he was in first grade and had been globally regressing since the previous summer. At the age of six, he had already been diagnosed with PDD/NOS, epilepsy, complex partial seizures (for which he was being medicated), sensory dysfunction, low muscle tone, and digestive and sleep issues. His school had him classified as autistic. He also had severe behavior, social, and academic issues.

From a neurodevelopmental perspective, Lucas had some sensory issues, as well as issues with muscle tone, strength, coordination, developmental motor skills, physiology, and auditory and visual processing. In addition to all of that, he had a questionable seizure disorder. The bottom line was we had a six-and-a-half-year-old child who was neurodevelopmentally where I would have liked to have seen him at age three, going on four. He had lots of potential—nothing scary, just pieces to put together.

Lucas had been referred to us by friends who have a child with Down syndrome named Abby, who was then and still is on an NACD program. I will a write separate post about Abby and her super occupational therapist, Debbie Hayden, shortly.

Lucas’s terrific parents were obviously anxious to see their son do better—much better—and were doing all they knew how to do with the help of doctors, therapists, and the school. They needed more and needed to address the causes, not the symptoms. Under ideal situations, I would have pulled Lucas out of school, kept him home, and had the majority of the day to address his issues one on one. Lucas’s dad was a farmer, a job requiring more than full time attention; his mom worked full time in HR; and they also had Lucas’s three-year-old sister, who needed their attention as well. So, Lucas needed to be at school full-time, and we needed to elicit the help of the school, as well as find some people to help his parents with program after school.

After that initial evaluation, I discussed his issues with his parents, and we started on a plan to address his problems, including his behavioral issues. The reality of Lucas’s behavior was that we had a strong willed, rather intense, six-and-a-half-year-old in first grade who had the ability to understand, think, and communicate like a three- going on four-year-old and a neurodevelopmental problem—we had to address his particular pieces.

It would have been nice to wave a magic wand, if it were possible, and have advanced him three years in a blink. Unfortunately, it takes some time to normalize sensory dysfunction, address physiological issues, sleep, severe processing delay, catch up academically and create new patterns of behavior.

Second grade had its challenges. He entered a new school year, and on day four he bolted from a situation. When his teacher grabbed him, he punched her. Unfortunately, because of a recent surgery, she needed to go to the hospital. Lucas was suspended for three days. Not a great start. After he was allowed back to school, he got upset at lunch with another student and hit him. Following this incident, we set up a behavior strategy to coordinate things between his parents and the school, which ended the aggression. That year he spent 85% of his school day in a resource room with an aide who did his NACD program with him. The other 15% of his day, he was with his peers.

It was then decided that it would be in Lucas’s best interest to repeat second grade while we continued the catch-up path. This second time around, with coordination between parents, the school, and NACD, Lucas spent his day in the regular class with a part-time aide, with some pullout time for school-based therapies. Through that year, the time with the aide continued to diminish, and with his advancing processing skills and the opportunity to be with peers, his social interaction and social skills developed. A year following his suspension, Lucas received the school’s “Pirate to Be Proud Of” award, an award given to just one child per grade in the school each quarter. Academically, he went from failing to As and Bs. By January of that year all outside therapies were discontinued—they were no longer needed.

Third grade started well; however, a significant event occurred in September. During recess Lucas felt he was falsely blamed for an issue that had occurred. When the class returned to their classroom, there was no Lucas. Lucas, having in his first years of school been sent to the principal’s office on numerous occasions for inappropriate behavior, had not gone back to class, but had instead gone to the principal’s office. He didn’t go because he had done something wrong, but because he needed to report the misunderstanding of the situation, and he felt that because he was blamed, he needed to report there. Having gained audience with the principal, Lucas stated his case and then proceeded to inform the principal that the playground was too small, that his friend who was in a wheelchair could not access the playground, and announced that he wished to speak to the school board about the issue. At that point, I knew I was working with a really special young man.

In February Lucas finally got to address 50-60 community members, parents, teachers, and administrators and presented a plan to make the playground handicap accessible. (See the video below.)

Lucas’s mom is currently working with a local group to create an inclusive playground in the community; and Lucas, because of his initiative with the school, has been invited to participate and has become a key spokesman in the development of this 1.5-million-dollar project.

Lucas is now an A/B student and is doing great socially. This past June, he won a purple ribbon for his 4H woodworking project, which moves him to the state competition; and this September, he will be showing a steer at the local community fair.

Lucas has shed all his previous labels; his seizures are history as well as his medications, his therapists, and his aides; and he has gained a new image: bright, kind, compassionate, witty, smart, and my hero.

Lucas represents what can be, what should be, and what needs be. We need to look at children as individuals with unlimited potential and not as labels. He exemplifies how we can get everyone working together to help achieve the parents’ vision for their child and produce the desired results.

What can be, what should be, and what needs to be.

Potential is defined by opportunity.

P.S. – Lucas read an email I had sent to his parents where I told them that their boy was going to do great things. Lucas’s response was, “If Mr. Bob says I will do great things, then I will.” I’d put money on it.

May I Have Your Undivided Attention? Fidget Spinners

 

Let’s just install ceiling fans in every classroom.

Ban Fidget Spinners with Bob Doman of NACDFidget spinners—what a wonderful invention—as though our children need something else to distract them. Let’s give children mini ceiling fans to carry around to help them pay attention—what a great idea! If spinning things help children concentrate, let’s just install ceiling fans in every classroom.

I have been arguing against giving kids on the Autism Spectrum fidgets for years. Do some kids on the spectrum like and want fidgets? Absolutely—they’re addicted to them. A fidget feeds their sensory addictions and helps keep them seated in their classroom chair when what is being presented quite possibly doesn’t fit them and goes on way past their auditory attention span. You attend to what you can process and if the input doesn’t fit your ability to process the information or what is being presented doesn’t match your knowledge/educational base, then you don’t pay attention to it (sadly this describes most children in most classrooms). Unfortunately, the operational definition of educational inclusion for children with developmental problems has really just come down to the kids sitting in desks and not making a fuss while surrounded by typical children. The special needs children then leave the classroom for a resource room where the instruction is hopefully more targeted and appropriate for the child. So, enter the fidget. The theory is that the fidgets help the children on the spectrum pay attention and avoid being distracted. As far as I know, there has been no good research to substantiate this, but I would suspect that if the research were directed at whether a fidget would keep a child sitting for longer periods the results would quite likely be positive. If, however, the study was testing whether the children learned more or if it helped their sensory issues, I believe the answer would be no. There has, however, been extensive research on the effects of any and all distractions while driving (paying attention) and the conclusion is that they are all bad. Try driving and watching your fidget spinner spin. You can give it another twirl if it stops and tell me if it makes you a safer driver.

One of the first things we recommend parents who have children on the spectrum do for their children who engage in visual DSAs (Debilitating Sensory Addictive behaviors), is to remove or a least not turn on any ceiling fans. As most parents with children on the spectrum with visual issues know, the kids will stare at ceiling fans endlessly if given the opportunity. None of these parents will tell you that their child is paying better attention or is more present while staring at the fan. The fan takes them away—it doesn’t help them focus or concentrate. Most visual stims or DSAs involve the child playing with and stimming with their peripheral vision. Your peripheral vision picks up movement and edges, both of which are stimulated in a negative fashion by ceiling fans, fidgets, waving fingers, staring at edges, etc. Fidget spinners not only distract with the visual aspect, but also with an audio and a tactile component—they hum and vibrate while they spin. So let’s have the child’s brain distracted with extraneous visual, auditory and tactile garbage and simultaneously help build a new addiction.

I’m sure to hear from “professionals” out there, particularly occupational therapists who just discovered that children have sensory issues, but having worked with Autistic children for fifty years and having learned how to help normalize their sensory issues, I am confident that feeding their addictions is not in their best interest in the long term. If the motivation and goal is to keep them content, in their seats and quiet at the cost of their development, then. . .

Now, enter the logic that begins with the erroneous premise that if fidgets help kids on the Spectrum pay attention, then perhaps they will help typical kids pay attention. Sadly many, if not most, children have successfully learned not to pay attention already and the last thing they need is another distraction. Parents and teachers often mistake the child looking in your general direction and apparently listening as attending. At best, we often mistake listening for paying attention. Listening is something you do when you’re watching your favorite sporting event and the game is tied with seconds to go and someone talks to you about the weather. Listening is something you do when you’re talking to someone on the phone while you’re checking your email. Ask the child who appears to be “listening” to repeat the last sentence of something you just said or read to them. When we talk about learning we are talking about changing the brain and to change the brain we need to put in specific appropriate input with sufficient frequency, intensity and duration. Of the three components, intensity is the most important. Intensity means focus and focus means that I have your undivided attention. We need to help teach children to focus and give undivided attention, otherwise parents and teachers are largely talking to themselves.

If we want to be proactive and improve focus and attention, we need to do a better job of targeting the input to fit the child. Teaching algebra to a child who still is struggling with basic math isn’t going to work. Speaking in paragraphs to a child who has difficulty following a two- or three-step direction doesn’t work. Making many children sit in a chair and attend for more than ten minutes without letting them get up and move around a bit generally doesn’t work either. We need to pay attention to the individual and teach to their knowledge level so they have some context within which to associate the information. We need to be aware of the child’s processing ability (short –term and working memory) and target the structure of the input to fit them. We need to provide educational environments as free of extraneous distractions as possible—not contribute to them—and we need to focus upon the neurodevelopmental foundation and help build the child’s ability to learn, communicate and function.

Many children across the county are learning not to attend, not be present and sadly are learning that learning itself isn’t fun, isn’t exciting and that it doesn’t work for them.

Ban Fidget Spinners!

—Bob

April is Autism Awareness Month

NACD Autism Awareness MonthIt’s Autism Awareness Month, so let’s talk about ASD (Autism Spectrum Disorder) and awareness.

They say you are what you eat. They should also say you are what you attend to and can process. What you perceive, the quality of what goes into your brain through your sensory channels, what you pay attention to and how much of it you can process essentially determines what and how much you learn. In turn, it determines how you can think, what you know, how you develop and ultimately your quality of life.

One way to gauge the level or degree of involvement of those on the autism spectrum is to look at what they give their attention to, their overall level of awareness and the degree to which they are present and engaged. As we look at individuals with sensory issues, which is generally how we refer to those on the spectrum internally at NACD, we start with observation and understanding that individual for the purpose of providing strategies to improve specific and global function.

We can observe virtually any child, watch what they are paying attention to and see how much they are attending to what is happening around them. This gives us a fair sense of what and how much they are learning and developing and what issues need to be addressed. Everyone essentially attends to what is meaningful to us and ignores what isn’t. We can observe any number of children who are on the autism spectrum or who have developmental delays, look at their behavior and develop insight as to their needs. For example, if there is a child staring at a ceiling fan rotating over and over, or a child who is in the corner waving their hands in front of their face and making repetitious sounds, or a child sitting quietly sucking on and smelling their fingers, or a child who is pacing around the room, relatively oblivious to anyone or anything going on in the room, then we know we have children who are essentially not present, not learning and not developing. We could also observe other children who are trying to get our attention, or are going around the room investigating and getting into things, looking at this and that, touching or banging things, knocking things over—children who are much more present and are learning and developing at a much higher rate. The varying degrees of a child’s involvement and of being present is essentially a representation of their level of severity and where they are on the spectrum.

The first group of children are not only not learning, they are engaging in behaviors that are making them more and more isolated, further delaying the normal development of their sensory channels and teaching their brains to ignore more and more of what is in their world. For their brains, the meaningless is meaningful and significant to their brains, while what should be meaningful is essentially meaningless. The exploring child is looking for meaning, for significance and that child’s brain will continue to do this with every new opportunity. The degree to which any child is inquisitive, attending to the right things (be it making eye contact because they know there is something to learn from observing your face and listening to your words, or looking at the people and things in their environment and interacting with that environment), the more present they are, the better and higher their level of function, the more and faster they are learning and developing.

Neuroplasticity, that thing which permits the brain to change and develop, occurs through input. It does not simply develop because we are getting older. The quality and quantity of the input the child’s brain receives determines not only how rapidly the child develops, but also how they develop. Good input generates good change and development, while bad input produces negative changes to the brain and impairs development.

Awareness, being present, is that which determines the direction and rate of development. For any child with a developmental delay, normalizing sensory function, redirecting them when they are “stimming” or engaging in DSAs (Debilitating Sensory Addictions or sensory addictive behaviors) and providing them with as much specific, appropriate, targeted input as possible is the formula that can produce the desired results and foster development. Positive neuroplasticity occurs when we provide the child with specific, targeted input that is delivered with sufficient frequency, intensity and duration.

For those children on the lower end of the spectrum, intensive neurodevelopmental intervention is needed to help bring their developmental pieces together. For any child with lesser issues or with a developmental delay who cannot process information or coordinate movements well enough to play independently, they are at risk of getting too good at infantile sensory play, getting developmentally stuck and need intervention to rapidly develop their sensory function and processing. Every child needs attention. Every child needs specific appropriate input and opportunities to maximize their potential. As parents, educators and those assuming various roles in helping children become all they can be, we need to perceive every child as having unlimited potential and do all we can do to provide them with opportunities commensurate with that perception.

All parents should be aware of what your child is and isn’t attending to. Pay attention to how present they are and be proactive. Bring them into this world or they will go into their own. If they have a problem, don’t perceive it as a disease, let alone an incurable disease, perceive it for what it is—one of many developmental steps that you need to help them achieve on their way to achieving their unique potential.

—Bob Doman

 

 

 

 

 

 

Autism Awareness Month – Should we really be using a disease model?

Bob Doman Autism Spectrum Disorder Disease Model NACDI am opposed to labels in general and “autism” is no exception. I am also generally opposed to looking at most developmental issues as diseases and again “autism” is no exception. The label and perception of autism as a disease leads to the perception that there is or that there needs to be a cure, that there is a pharmaceutical cure—a magic pill. I have also believed, having dedicated my life to understanding how to help all people achieve their innate potentials, that our strength as a species lies in our uniqueness as individuals—in our diversity. Every child has developmental needs and the better job we do at addressing those needs, the better job we have done at helping them achieve their unique potential. With those on the spectrum, our job is not to cure, nor to merely teach them skills that we feel are commensurate with the limited potential associated with their “disease”, but to assist in the developmental process. As with all children, we need to assist in developing their sensory function, their processing ability and as much as possible provide an individualized education in a positive, supportive, “typical” environment while simultaneously celebrating their uniqueness and ability to contribute to society. I have been very privileged over the course of five decades of work with Autism Spectrum Disorder (ASD) to have assisted thousands of individuals ascend through levels of the spectrum to become happy, successful “disease-free” members of society. Our job, our role for those on the spectrum and for that matter all children, is to understand and assist them in their ascension to a full and happy life.

Eye Contact

autism_articleI just passed a billboard on the freeway that had a picture of a child and said something like (I was perhaps traveling a little fast and only caught the sign out of the corner of my eye): “Avoiding making eye contact is a sign of autism.” Really!

A child not making eye contact might be a sign that they have a visual problem, are lying, or anxious, or insecure, or even doing something terrible like visualizing and thinking. Is it true that many autistic children make poor eye contact? Yes. But do they “avoid” eye contact? No. “Avoid” implies that the child is consciously not doing something, like connecting to you. This perception harkens back to the old psychiatric perception of autism and links to the old refrigerator mother nonsense.

Autistic children who have not yet developed good central vision, and who more often than not function largely with their peripheral vision, do not make good eye contact simply because they can’t; and if you try and force many of them to look at your face, you are in fact making it very difficult for them to see you.

I hope parents of autistic children can avoid those professionals who feel that their children choose to avoid making eye contact with them.