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

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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.

You Don’t Have to Be Perfect

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“You don’t have to be perfect.”

This insightful and profound statement is coming from this soon-to-be eighteen-year-old lovely, trilingual, beautiful and wonderful young lady who just happens to have Trisomy 21 (Down syndrome)—Arianna Dinwoodie-Palmes.

Arianna lives in Barcelona, Spain. She reads and speaks fluent Catalan, Spanish and English. She attends a school where classes are taught in Catalan and Spanish. She learned English from her dad, who is from the United States. She takes a theater class once a week with “typical” kids, personally takes care of enrolling in the course every three months and pays for all her classes. She also does gymnastics with kids who have some learning challenges. She lives in an inclusive world. She navigates the very big, chaotic city of Barcelona on her own, taking public transportation to and from school while meeting with friends for movies, lunch and other social events. She loves Zumba, singing and doing research projects on the Internet and is very concerned about ecology and pollution. She is finishing high school this year and is looking forward to trade school next year, focusing on administration, sales and customer service. She is a happy, caring, typical teenager, who also happens to have Trisomy 21 (Down syndrome).

The video (see above) was Arianna’s idea and she wrote her own scripts. These are her unedited thoughts and words—in three languages! Arianna’s level of function makes her normal. Arianna’s insight, personality, smile and overall goodness make her exceptional—exceptionally wonderful!

“You don’t have to be perfect.”

Such a simple, obvious, but profound statement, particularly when viewed in light of the still staggering numbers of fetuses identified as having Down syndrome that are aborted. Recent research states that in the U.S. there is a termination rate of 67% of fetuses following a prenatal diagnosis of DS. None of us are, none us will ever be and none of us need to be perfect.

Somehow our enlightened, educated and politically-correct society has created and perpetuated the myth that some of us are not miracles of creation, that we do not have limitless potential and thus are condemned by myopic prejudice to be deprived of the right to live; or are often condemned by perceptions of limited potential and given limited “appropriate” opportunities that are commensurate with the perceptions.

Arianna is one of our NACD kids. She has been on one of our TDI Targeted Neurodevelopmental Intervention Programs since she was a year old. She and thousands of other NACD kids are reflections of what can be, given the opportunity. Defining opportunity as having dedicated proactive parents who, when given the tools and the vision, can truly provide their child with an opportunity. We all need to be perceived as having unlimited potential and giving the opportunity to achieve, but we also need to realize that, “You don’t need to be perfect.”

After all, isn’t being less than perfect what defines us as being human?

—Bob

He Has Down Syndrome B’Gosh

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I saw this great story about cute little Asher and his wonderful mother Meagan Nash. Our children with Down syndrome and other developmental issues have a place in our world, can develop beyond most peoples’ expectations and can make contributions. For most of these individuals, it’s not the government, the institutions or even society as a whole that really makes the difference. It’s mothers—mothers who assume the primary responsibility for their children, who work with their children, help them develop their potentials and who realize they need to be not only their child’s cheerleader, but their advocate. Proactive mothers and fathers make the difference—for all children.

What Do Behavior Development, Social Skills and Maturity All Have in Common?

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NACD Blog Behavior, Social, Maturity & Splinter SkillsA great deal of time and effort is spent attempting to teach children, particularly children with developmental issues, skills that will assist in their daily life. Many of these attempts are actually attempts to teach splinter skills. Splinter skills are specific skills that do not generalize because they are not developmentally based. To generalize means that something taught specifically can be used and incorporated throughout overall function. If something cannot be generalized, it has very limited value and more often than not fades away. Whenever possible we want to dedicate the majority of our time and efforts to building the neurological foundation.

As children advance in their global development and function, they will generally acquire a vast array of associated skills commensurate with the advanced global/cognitive function. If we look at children from birth to five, where the development is typically the fastest, we see that the children over the course of each year acquire a broad range of new abilities that cover the full range of human function. These include the development of receptive and expressive language, gross and fine motor functions and skills, along with social interaction. In typical development, we essentially start with an infant who cannot control any part of their body and cannot interpret anything they see, hear, feel, smell or taste. In five short years, this same individual can run, jump, climb, take care of most and possibly all of their personal needs, carry on a conversation and interact socially. They have knowledge of everything from the name of an insect to the quarterback for the Rams.

Most of what the typical child has learned they were not specifically taught—they have learned what they have simply because they could. As their brains have developed—as their processing, short-term memory, working memory, and executive function have improved—their brains have simply been able to absorb more, understand more and do more.

If we are intelligently and wisely teaching a child or a young adult, whether they are two or twenty-two, we are teaching them things that are commensurate with their global neurological function or maturity. If we are attempting to teach specific skills that are not appropriate for their global function, we are actually attempting to teach splinter skills. Splinter skills are very specific situational skills that do not generalize. To some degree this can be done, but rarely well or quickly and rarely does it stick.

Many of the functions that we would love to see change, the appropriate behavior social skills we would be delighted to see emerge and the maturity that we hope for, are really reflections of what is termed executive function. If we understand executive function and how it develops and is built, we can dedicate more of our time to what works and not so much to what doesn’t.

If we are to be successful in helping a child develop and gain foundational skills including behavior, social skills, and maturity, we must first establish the neurological and cognitive foundation.

And now for the rest of the story…

—Bob

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Plan C

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NACD Bob Doman Blog Plan CI’m in LA, flew in this morning and spent the afternoon working with a couple of great families.

I had a quiet dinner and read my book in the hotel restaurant. When I left, I saw the hotel manager and we passed pleasantries. I’ve been coming here for many years, and Arthur and I have kind of grown “older” together. He asked how I was and I commented “okay,” but he had observed my slower than normal pace. I acknowledged that my back was giving me fits. He said that getting older was better than option A (not getting older). I suggested that I wasn’t happy with Option A or B (accepting the inevitable) and was going to pursue Plan C.

What is Plan C? Plan C is investigating, working and fixing my back so I can actively pursue life. For so many of our children and us, the perception is that our choices are limited; accept the diagnosis and prognosis, follow the typical path, and accept the inevitable. I don’t think so!

The medical model—make a diagnosis, based on the diagnosis make a prognosis, and then apply accepted procedures—doesn’t work for me. For children with developmental problems, that means accepting labels, creating expectations based on the label and on how the “professionals” have failed those with the same labels, and then making accommodations and accepting limited potential. Hooray for all of you “average” people who choose to be exceptional. Hooray for all you parents who have children with educational or developmental problems who choose to believe your children have unlimited potential.

Let’s hear it for Plan C!

—Bob