I 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.”
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?
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.
I chose this statement to be the title of my blog as a representation of my strong belief that, as a scientist, every statement or opinion I make is stated as, or assumed to be, preceded or qualified by the simple, but incredibly important modifier—“It Appears That”. As such, I am communicating that based on the information I have at this moment, it appears that such-and-such is accurate and I will act on that assumption until additional welcomed information indicates otherwise.
I just read Benjamin Franklin’s autobiography, and in his discussion of virtues, he added “humility” to his list. Having admired Franklin as an incredible man with a very long list of virtues (and a rather large ego), I was amused by his statement in referring to humility:
“I cannot boast of much success in acquiring the reality of this virtue, but I had a good deal with regard to the appearance of it…I even forbid myself agreeable to the old laws of our Junto,* the use of every word or expression in the language that imported a fix’d opinion, such as certainly, undoubtedly, etc., and I adopted instead of them, I conceive, I apprehend, or I imagine a thing to be so and so, or it so appears to me at present.”
My education and involvement with “experts” has been littered with emphatic opinions stated as “facts” that I have often rejected out of hand. Not a few of these have had to do with what you supposedly can’t do. Not a few of these expert statements involved the “powers that be” declaring that something couldn’t be done. I spent years changing IQ’s when the experts said you couldn’t change IQ’s and decades changing working memory when virtually every “expert” said you couldn’t change and build working memory. One of my first, but many major conflicts with the system and the experts involved my getting in trouble with the State of Pennsylvania for educating trainable children in the early 70’s. It appeared to me that if I were in fact teaching children to read, write and do math that they obviously were educable. But, the brain-injured children, children with Down syndrome, autism, etc., who they proclaimed to be uneducable, and thus were denied an educational opportunity back in the 60’s and 70’s, were the victims of the “experts” self-fulfilling prophecies and not their lack of potential. I must admit it was then, as it is now, very fulfilling proving them wrong over and over again, as it was with the “blind” children who would “never see” who learned to see, the children who would “never talk or learn” who talk you ear off and academically do better than many of their “typical” peers and the countless number of children who would “never walk” who learned to run—not to mention all of the “average” children who became truly exceptional.
I was literally raised with my father, a renowned but very humble physician, teaching me that the foundation of all brain development is neuroplasticity and if you understand neuroplasticity there are virtually no limits to how you can grow and develop every brain.
Throughout my career, I have been rather astonished by how slowly things change; how it is that educators, psychologists, therapists, physicians and other “experts” are often so slow to question and challenge their beliefs and practices and accept limited expectations and often failure. If we could just accept that in all science, there really are no facts and accept that it just “appears that”.
* Junto refers to a club that Franklin established in 1772 for the purpose of debating morals, politics, philosophy and to discuss knowledge of business.
A number of years ago I had a group of about fifteen families who lived in a small town in Canada and would come down to our chapter in Lethbridge. I would see the families every three months, conduct their assessments, and redesign their programs. It was a close-knit group of families who did a great job of supporting each other. A month after one of my trips, a vision therapist moved into their small town, and the word went out that he could find and address a variety visual problems, problems that “affected virtually all aspects of developmental and educational problems.” To make a long story short, virtually every one of the families signed contracts to get “treatment” twice a week from this guy. When I saw the children two months later, every child who had tracking, convergence, or other visual issues was significantly worse, and a number who had not had an issue now did. These families had all gone down the rabbit hole and discovered that they had wasted time and money and, most significantly, harmed their children. This was a problem years ago, but now with the Internet this is a much greater problem than it was then. Pooling ignorance and opening up new rabbit holes just gets easier.
I am sorry to hear when we have a new snake oil salesman come to town and parents—anxious for a quick, or quicker, fix and with a fear that they might be missing something that could help their children—line up to jump down the rabbit hole. With the Internet, chat groups, and conferences, these things now spread through various groups like viruses, infecting many and constantly morphing. Unfortunately there are no vaccines for these viruses other than science and education. Many folks have a concept of research that is defined by checking a few boards and seeing how many people are jumping on the train. Parents need to really understand and to really research the science—if there is any. Sadly, as happens, a little bit of pseudo-science leads to a lot of garbage, big business, and a lot of rabbit holes.
We at NACD are uniquely positioned to discover what works. We work with the whole child, not seeing them as pieces in isolation, as does most of the world. We are philosophically driven, not methodology-driven or product-driven. We are not out to sell any specific method or a technique, a pill or whatever; we educate parents and professionals and work to advance the science. We are not giving parents generic therapeutic or educational tools. We are constantly investigating, evaluating, and developing new and better ones and learning time and again that specificity, frequency, intensity, and duration and hard work are the keys. We have six decades of experience with tens of thousands of whole children in whole families from around the world approaching the work from the perspective that we are always looking for better tools. We have thousands of tools in our toolbox and do not hesitate to send a family to a specific practitioner if we feel that they have something to offer. The list of treatments, that we refer individual children to is as long as my arm; unfortunately the list of what appear to be inappropriate (for a specific child), harmful, or ineffective treatments (and which often have associated products to purchase) is longer than both my arms and legs put together. With our international network, there isn’t much that we don’t hear about. After all, our families are all free to pursue whatever they want, so we keep hearing about all of the rabbit holes and the occasional valid treatment.
We gather tons of data from our children and can generally look at any individual child and group of similar children and watch their progression globally and in specific areas. As we do this we look for outliers, those with bumps up or down in their developmental curves, then look for a cause. We do this constantly with new techniques that we develop, watching to see if we are changing the curve beyond what we would have expected before. We always watch with particular vigilance those children who are receiving some outside treatments or therapies. We then engage in our favorite “free-time” activity, conducting research and reviewing research. Based on our analysis we may see some promise in an approach and await more data. If it seems valid we try incorporating it and gather more data ourselves, refer families out to receive the treatment, and continue to gather more data to either isolate for whom it might be applicable or helpful or determine if it is a valid approach.
As many of you know, I have long said that the example of one is worse than no example at all. We are constantly seeing epidemics of treatments based on one or two parents thinking they had found the magic pill. Parents are very susceptible to believing that something worked. Particularly troublesome are the treatments that say that “any change you see in your child in the next day, week, month, year is a result of this specific thing we are going to sell you.” Unless kids have an underlying health problem that we need to help the family address, we can look at how much program we are able to get accomplished and have pretty strong expectations of outcomes. Most children change. Change does not mean that something worked. Scientifically isolating the pieces and having sufficient data is the key and which is why we have been so uniquely positioned. I have always been a skeptical optimist. When I hear of something new that sounds promising, I am always hopeful that it will work. At the same time, I am very cautious with our families’ time and resources and their children’s futures. Most of these “new” treatments have been repackaged over and over again, or pieces from this and that combined to present something “new,” and most are marketed and built as businesses. When you understand the complexity of a child and see how many of these “practices” are built on practitioners receiving a weekend training and supposedly being able to apply treatment and sell products addressing a broad range or problems and conditions, you should start waving a red flag. (I generally just see red.)
We certainly don’t have all the answers, nor will we ever, but we feel responsible for the children and families we work with. We have only one goal: to help them get to where they want to go and to get there as quickly as possible, using whatever means available. Our single biggest problem, without a close second or third, is getting enough program accomplished and accomplishing it well. We have to give most families a compromised program because of their lack of time and resources to get their program accomplished. Every one of our evaluators can look back over their years and caseload and see the great successes, be they kids on the spectrum, brain injured, ADHD, typical, or Down syndrome, and we can all tell you why the great successes were there. They did program and they did it well. None of our top kids in any category did anything beyond program or the few specific outside things we might have recommended. Pretty universally, those finding rabbit hole after rabbit hole to jump down are not the success stories. NO MAGIC PILLS OR MAGIC BULLETS!
When I hear of families spending thousands of dollars for something that some parent said worked for their child, all I can do is pull out my hair and scream to the mountains. When I hear how much time and money they spend on “magic pills,” my mind always jumps to how much help they could bring in and really do a great job with their programs for what they are spending on jumping down the rabbit hole. We all have limited time and resources, and not many of us can waste those.
Families go to conventions, many of which are actually just sales events; most speakers aren’t there to educate, they’re there to sell. Families mistakenly feel that if someone is speaking then they must have some credibility. No, often they are just adding to the list of things parents can buy or buy into. The organizers feel they are helping families by exposing them to as much as possible. The rare times we agree to speak to a group it is to help educate the parents, not sell them something. We disseminate knowledge and information. We have been proud to be at the forefront of developing better and better insights and methods to help the full range of children and to see the fruits of our labors change perceptions and opportunities for our children. To borrow a line from a TV ad, “We know a lot because we have seen a lot.”
Two generations of work have just reinforced that the basis of all neurological growth is neuroplasticity, meaning we change the brain and cause development to occur by supplying the brain with specific targeted input with sufficient frequency, intensity, and duration. It is a proven process, it works, but it necessitates time and work. You can no more produce significant neurodevelopmental change with a magic pill than teach a child algebra overnight with a drug or supplement. We will continue to find better, more specific tools and to create more and more insights.
There is a lot to learn and we understand that parents have only so many resources and so much time. We try to help families utilize their limited resources well and productively and we will continue to rely on and develop the science. There are many scientists, professionals and groups that are helping to develop the science and improve the lots of all of our children, but it becomes more and more difficult for parents to sift through all of the chatter. Despite your child’s problems or diagnosis, your child is unique. Your child’s problems, issues and needs are specific to your child not to their label or diagnosis. Every one of the tens of thousands of children we have worked with were unique. Understanding that and seeing every child through fresh eyes has been fundamental to our successes.
Please beware and please avoid jumping down rabbit holes that only make your goals tougher to achieve.