The Rest of the Iceberg

The ProfessorApril is Autism Action Month, but here at TMR we know that autism is only the tip of the iceberg.  Remember how only one-seventh of the iceberg is visible above the water line?  That’s autism.  Below that, is a much larger, not so visible, section of the population that is also living life chronically ill (what I like to call the “infrared” portion of the spectrum, just not as ill as those with autism.  The rates of many other childhood illnesses are rising nearly as dramatically as that of autism.  Asthma, allergies (especially life-threatening food allergies), ADHD, and apraxia are all getting diagnosed with frightening frequency.  And that’s just the A’s.  Many, many children are taking medication for one or more of these conditions,  and a high proportion of those expect to be taking those medications for the rest of their lives.  In fact, so many children are sick these days that medical professionals tend to shrug their shoulders and imply that’s “normal.”

I was born in the ‘60s and I can clearly remember when that wasn’t “normal.”  I lived in five different states and I was the only one I knew who had chronic ear infections (not in infancy as is so common today, but after I started school).  I was the only one I knew with chronic nasty allergies (until I got to college, anyway), so of course I was the only one I knew with asthma too.  Well, other than my kid brother, that is.  My older siblings, all six of them, had no such issues.

Why is there so little curiosity in the medical world as to what’s going on?  Doctors write plenty of prescriptions, but do they ever dig deeper to try and understand what’s really happening?  My mother is one of thirteen children.  She had four younger siblings, eight children and eighteen grandchildren before my daughter came along:  the baby who couldn’t be put down, didn’t nap, was ultra-sensitive to sound and the feel of water, flatly refused to eat baby food, had separation anxiety at the age of six months, and was walking at the age most children were learning to crawl.  My mother had never seen a baby like Trinity before.  She wasn’t anything like the babies described in all the baby books either.  All but one, that is.  Dr. William Sears is a pediatrician who had three children already when his daughter Hayden came along.  In The Baby Book he describes her as “high needs.”  Her reactions were very different from any baby he had previously dealt with, and many of the strategies he had already learned with three prior children were useless.  His Hayden sounded an awful lot like my Trinity.  In talking to many, many parents, I’ve noticed that more and more “high-needs” babies are being born.  Why?  What is causing these high needs, anyway?

My “high-needs” baby grew up to be a bright talented teenager  who was officially diagnosed with ADHD this past year.  She’s by no means the only one.  She’s currently in eighth grade in a public middle school in Brooklyn and at least four other children in her class have told her that they too have ADHD.  They are all on medications and/or have accommodations.

I’ve read many articles lamenting the current high rates of medicated children that highlight ADHD in particular.  The latest numbers from the CDC say that 11% of children ages 3-17 have been diagnosed with ADHD.  One out of five boys in high school is diagnosed with ADHD.  Many of the articles wonder if we’re expecting too much of our children, and, therefore, treating “normal” children as if they are “sick.”  They cite the high rates of diagnosis and medication as evidence that something has gone very wrong.  “To say that a tenth of all children have a biologic condition that affects their life enough to call it a disorder just does not make sense,” says Dr. William Barbaresi, director of the developmental-medicine center at Boston Children’s Hospital.  “Mild symptoms are being diagnosed so readily, which goes well beyond the disorder and beyond the zone of ambiguity to pure enhancement of children who are otherwise healthy,”  says Dr. William Graf, a pediatric neurologist and professor at the Yale School of Medicine.  While I agree that something has indeed gone very wrong and there is way too much prescribing of psychiatric drugs for children and adolescents, I don’t think most mainstream articles have put their fingers on what has gone wrong.

The implication in those articles is that we’re taking “normal” childhood behavior and pretending that there’s something wrong with it.  Small children, especially boys, shouldn’t be expected to be able to sit still all day in school, or behave according to school rules since the rules are so counter to their own nature.  There may be an element of that with respect to parents of high school students who are giving them Ritalin,  Adderall or Concerta in order to boost their test scores.  So it’s a seductive thought; maybe there really is nothing “wrong” with all these children who carry the ADHD label.   But when it comes down to it, how many parents could there be who are willing to risk their children’s long-term health – after all, we know very little about the consequences of long-term use of ADHD drugs – in exchange for the possibility of a few extra points on a standardized test?  Isn’t it more likely they are turning to medication in order to deal with a difficult challenge?

(By the way, the argument probably sounds familiar to you if you’re familiar with autism and the meteoric rise in autism rates.  The trend in mainstream media is to downplay the rise by claiming that it’s explained by “better diagnosis,” or it’s just a reclassification of issues that always existed in the same kinds of numbers – which you know is utter nonsense if you’ve been paying attention at all.  Or even to claim that parents are seeking the “trendy” diagnosis in order to obtain “services” for their children. No one ever seems to stop and ask themselves why parents would be seeking out services for children who don’t have problems. Personally, I’ve encountered precious few, if any, parents interested in services for their children for non-existent or trivial matters.)

And then I remember my own childhood. I was never in a classroom with less than 30 children, and we never had a student teacher for more than a few weeks a year. Parents did not appear in the classroom at all except for birthdays and holidays. In the entirety of my elementary school years I only remember one significant altercation between a teacher and a student. It was about gum chewing. I’m sure there were more; the cliché of the kid being sent to the principal’s office didn’t exist for nothing. But my overall sense is that the vast majority of teachers – even young, female teachers – had no problem keeping a classroom with anywhere from 30–44 children (yep, there were 44 kids in my first-grade class) engaged and reasonably well-behaved all day long all by themselves.  And that was back when the desks were frequently placed in rows, with the lessons taking place on the blackboard in the front of the room. I don’t know anyone, teacher or parent, who can even imagine such a thing these days.  Something has qualitatively changed about today’s children.

Lest you think I just have a faulty memory, I’ll give you some more food for thought.  Researchers Rachel Klein and Salvatore Mannuzza conducted a long-term study following 226 boys with ADHD starting when they were eight years old. At  age 19, ADHD subjects had “completed less formal schooling, achieved lower grades, failed more courses and were more often expelled” than control subjects.  The ADHD subjects were eight times more likely than the controls to develop substance use disorder (17% v. 2%).  ADHD subjects were arrested at almost twice the rate of the controls. Children with ADHD were two-and-a-half  times more likely to have any psychiatric disorder in adolescence than control subjects. A recent study found that teens with ADHD were 2-3 times as likely to have substance abuse issues as teens without ADHD.  Teens with ADHD are two to four times more likely to have a car accident than teens without ADHD.

These are not minor effects.  I would think that for the average parent they would be pretty damned sobering.  Given these kinds of statistics it seems likely to me that the vast majority of children diagnosed with ADHD do have a disorder that is affecting their lives significantly.  And that is a relatively new phenomenon.

So what do we do about it?  Give our children strong stimulants that could have severe and significant long-term health consequences, possibly for the rest of their lives?  Or figure out what the hell is causing it and do what we can to restore them to health?  In essence, the two are not necessarily mutually exclusive, but it seems that in practice they are.  The majority of people I know who are searching out the biological roots of the issue are rejecting psychiatric drugs, while the majority of people who are medicating their children seem to have little to no curiosity about why their children are the way they are.

My experience has confirmed again and again that ADHD, as well as a number of other chronic childhood conditions, shares many of the same causes and effective treatments with autism.  We need to get that message out to doctors and parents who still think we’re all “anti-vaccine wackos.”  Whether or not they have acknowledged it to themselves, they are aware that something is “off” in children’s health today and they know that medication is just covering the problem, not fixing it.

The revolution we envision here at TMR is going to require huge participation from the general public.  It’s going to require adding the weight of many of those affected by the other six-sevenths of the iceberg to our end of the rope in order to yank the rise of chronic children’s illness to a screeching halt and — finally — begin to reverse the trend.  This is one tug of war we need to win.  Our children’s lives depend on it.  So, please, do what you can to help us get the word out; this month and always, it ain’t just autism.

~ Professor

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18 Responses to The Rest of the Iceberg

  1. Scarlett says:

    Our eldest daughter is in the Fourth grade and suffers from ADHD. Getting organized to write might be her biggest headache but I think we got the perfect tool that works for her. She is able to really buckle down when she works with the Ink for All word processor

  2. Jeanetta Trusello says:

    Optometrists are medical professionals but not physicians. After college, they spent four years in a program and got a degree in optometry. Some optometrists undergo additional clinical training after optometry school. They focus on regular vision care and prescribe eyeglasses and contacts…”-^

    Go look at our new homepage too
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  3. Illiterate Too? says:

    Well, I can add one more to your well written article…Not sure if it is the same where you are, but all I hear in news reports these days, is the HUGE rising illiteracy rates…Claims that children (en masse) are graduating school, basically unable to read…

    WHY — maybe more of the same regards your explanations?

    Back when I was a Grade One Student, in a small country school, large classes, few resources, student homes had few books, and parents in student homes had little time to read to students, somehow students learned to read.

    For example, in my Grade One, I was the last child to read well out loud. (Happen to recal as the test for this was on my birthday)..All the other children were reading well out loud, long before myself.

    WHY not now?

    • Professor says:

      Interesting that you brought that up. I don’t hear about rises in illiteracy here in New York so much, perhaps because in the city there was always quite a bit due to poverty and immigration. I DO know that learning disabilities such as dyslexia can have some of the same roots. One of the theories about dyslexia is that it is due to a lack of phonological awareness. The dyslexic person literally cannot distinguish between sounds and therefore cannot attach them to specific letters in his or her head. So I would not be at all surprised if illiteracy rates were tied to the same kinds of damage we’ve been discussing.

      • Illiterate Too? says:

        well, re “the city there was always quite a bit due to poverty and immigration”…
        I would question that as a “reason”…
        where I grew up, very poor/grandparents immigrants/parents had little education — this accounted for most of the children…and as I moved around a bit, more of the same, except I always did have immigrant children in my class…and they too read well…

        really, back then, we were all poor/all had little in what is now considered important – books/being read too/etc..Yet all read , and read well…

        these days there is so much support..
        and frankly, if a kid is reading well in Grade One, it is considered Unusual….

        I do wonder if it is unusual all accross North America/All Well Vaccinated/Well Medicated Countries?

  4. tstarmom says:

    Very informative post and interesting stats on ADHD. I too, wonder why so many parents are willing to just medicate their child instead of getting to the root of the problem. I know some children have no other choice but to be medicated, but too many parents are quick to jump on the bandwagon. I have a niece who has been medicated since she was 3 years old and is now 16. She has never been able to see if she outgrew it or if it evolved into something else. I guess the parent’s thinking is that they will be on these drugs for the rest of their lives? In the grand scheme of things it seems like it would be easier/cheaper to figure out the problem, deal with it, and then move on with your life! That’s my thinking anyway.

    Last, this is off the subject of this particular post, but does your son still have food allergies or were you able to eliminate those with the acupressure that you mentioned in the book? Jake has a severe allergy to fish, grass & dust and a moderate allergy to peanut and almond. He also has many intolerances. Our holistic MD has a good acupuncturist at her practice & I contacted her this week to inquire. Just wanted to get your thoughts.

    • Professor says:

      Tstarmom, thanks for commenting! My son’s allergies were actually ELIMINATED by that technique. He does NOT have asthma today. It does not, however, mean that he is incapable of becoming sensitized to the same or different substances in future. We did those treatments five years ago and I’m pretty sure he’s allergic to at least one thing these days, but I have not nailed down what it is. With infinite money and time, I would definitely go back. But, alas… I’m not at all sure that an acupuncturist would be able to get the same results. This was a very particular technique and I think if an acupuncturist were aware of it and/or trained in it, acupuncture could probably be extremely effective. I just think that most are not. Talk to your acupuncturist about NAET and see what he/she says.

  5. nhokkanen says:

    Dr. William J. Barbaresi co-authored a 2009 Pediatrics article, “Incidence of Gastrointestinal Symptoms in Children With Autism: A Population-Based Study.” He used to work at the Mayo Clinic.

    Look at Barbaresi’s conclusion:
    “As constipation and feeding issues/food selectivity often have a behavioral etiology, data suggest that a neurobehavioral rather than a primary organic gastrointestinal etiology may account for the higher incidence of these gastrointestinal symptoms in children with autism.”

    In 2005 Barbaresi said children had been given MMR for two decades autism increased markedly. However he failed to factor the later acceleration of the vaccination schedule with Thimerosal, and untested combinations.

    Age of Autism’s Mark Blaxill noted, “Barbaresi et al assessed time trends in autism rates. They conclude that increased rates were caused by changes in diagnostic criteria. Their analyses, however, suggest the opposite.”

    Barbaresi is one of the people trying to bury the bodies in cement.

    • Professor says:

      Nancy,

      You are always a fountain of information. 🙂 Barbaresi strikes me as one of those doctors who can easily convince himself that the result is the cause. Unfortunately, the average human being is unaware that biases in science come about due to the biases of scientists. Just because someone has letters next to his or her name doesn’t mean they think clearly.

  6. shell says:

    MOST but not all children who are diagnosed with ADHD actually have a systemic internal infection which you can treat at home. Many are DYSLEXIC, cannot learn by the auditory mode (just being lectured.) Add to that an inability to have both eyes cooperate and track together. What you will see is struggling kids, medicated or not, becoming whiny or aggressive with co-morbid diagnoses.

    What you could have had instead is a child whose infection was healed, eyes were exercised for a lack of convergence, poor depth perception, undiagnosed double vision-(usually NOT found by eye doctors),a kinesthetic or visual learner, and one whose “Type” of Dyslexia (Just in math-Dyscalclia, or just in writing, etc.)

    To see these issues and learn what tools to use plus other options is what my book will guide you with. Some parents try one thing then another and see baby steps of progress with a few. This will add some cohesion to those who have worked so hard to help their child but still find something missing. For those with very young children- it will help to create a successful, happy, willing kid. My commitment is to get all parents ways to heal and recover our afflicted kids. Shell of “Recovering Autism, ADHD, & Special Needs.”

  7. Allie says:

    Professor, THIS post really hits home for me. When my Aidan was 3, and I was very pregnant with his brother, we could no longer deny that something was very wrong with Aidan. He wasn’t going to “grow out of it” and his aggression was only increasing. This is when I met my girl, Blaze. In one meeting, she single-handedly ripped off my blinders, gave me a ton of information to begin digesting and places to begin my research, and insisted that I find $800 for autism lab work RIGHT NOW. We borrowed the money for the labs, and when we got them back, our pediatrician was floored. He told us that based solely on the labs, Aidan appeared to have severe autism. (Food allergies, high levels of oxidative stress, encephalopathy, heavy metal toxicity, a gut overloaded with bacteria and yeast, etc). However, after examining Aidan, he did not appear to have autism. Aidan was VERY verbal, made eye contact, no stimming or flapping. He gave Aidan a tentative diagnosis of ADHD. Our pediatrician told us then that he had long believed that the root causes of MANY childhood disorders (ADHD, Aspergers, autism, allergies, asthma, etc) were MEDICAL and RELATED. He told as that most parents looking at an ADD/ADHD diagnosis would not consent or pay for the $800 autism labs, as we had….they just wanted the prescriptions. We did NOT want to medicate Aidan. Our doc then told us something so powerful, I will never forget it. He said that Aidan was standing on the edge of a cliff, and all 10 toes were dangling over the edge. Just ONE more assault on his immune system, another injury, another illness, another VACCINE, could be enough to push him right over the edge and into the abyss. We had to act NOW. So, with our doctor, we stopped vaccinating Aidan and followed Blaze’s trail of biomed intervention – diet, supplements, HBOT, IV chelation, chiropractic care, O/T therapy, homeopathy…the list goes on and on. And every successful intervention, treating the underlying MEDICAL conditions, brought my boy back to me just a little bit more. The missing piece of our puzzle was Dr. Robert Melillo’s Brain Balance Program. After almost a year of working with the program from home, we relocated in June of 2011, and Aidan spent 5 months in the Brain Balance Program. The results have completely changed his life, in all the best ways.
    I will be forever grateful to my pediatrician, the folks at Brain Balance, and most especially, to Blaze for saving my Aidan. But she didn’t just save Aidan…because of everything I learned from her, my two younger sons have never received a vaccine. My middle son had a significant speech delay, and my youngest suffers from chronic allergies – I shudder to think of what else they might be suffering from, had we vaccinated them.

    Allie

    • Professor says:

      Allie, I am THRILLED to hear your testimony on the subject, and not least because I am investigating Brain Balance RIGHT NOW. I’m going to chat with you further on this…

    • Angela Miller says:

      We r having a very hard time finding a dr as knowledgeable as the one you are talking about in your post – or maybe I am just not looking in the right place. Can you please let me know if you can recommend someone and what labs you ran??? We r in Atlanta. Thanks so much!

  8. Toni Wickham says:

    i agree..we need to get the word out.. i have a 4 year old autistic girl and a 5 year old boy who was diagnose with ADHD… I also think people really need to understand what ADHD is.. It is not just your kid having alot of energy.. My son at 5 is having a very hard time with writing, sounding out words and reading.. so much so that the school wants to keep him back in kindergarden.. Repeating a grade isn’t going to help…He needs the right tools to help him.. I which he is not getting in school.. yes they say these kids are more likely not to hold a job, more likely to abuse drugs (giving drugs to a 5 year is abusing drugs).. it is because they aren’t getting the help they need today..

    • Professor says:

      Toni, I totally agree with what you are saying. I saw that my daughter wasn’t getting what she needed to learn to read and I was lucky enough to find an approach that worked with her (Teach Your Child to Read in 100 Easy Lessons – though I would never have called those lessons easy!). If we hadn’t done that concentrated work, I shudder to think how much harder school would have been for her. It was tremendously difficult and I still get PTSD from time to time, but I think it was immensely valuable in providing her with skills she needed long-term.

  9. Angela says:

    I have two children – 4 and 3 – that have been diagnosed with ADHD with SPD and apraxia with SPD, respectively. I don’t know if we will ever get autism diagnoses, but I do firmly believe in the idea that these issues are all related and on the same “spectrum”. I recently changed my three year old’s diet after learning he had severe IgG sensitivities to gluten, casein and egg. I also suspect my daughter has similar issues. I am looking for a good, holistic MD in my area (Atlanta) that understands the gut issues and other ailments that tend to affect these kids. I have given up on the mainstream PCP’s that my HMO (Kaiser) will cover. We are also doing chiropractic, cranial sacral, and I have them on some nutritional supplements (NutriiVeda) and Nordic Naturals fish oils. Anyway, all that to say thank you so much for your post! I really appreciate what your group is doing and often wish I could come in and pick your brains as I sort through the maze of information, scientific data, treatment options, and contradicting opinions on all of this.

    • Professor says:

      Angela, our very own Blaze knows a lot of people in Georgia. She may be able to suggest someone for you. Send us a PM on our Facebook page and she’ll get back to you. (Sounds like you’re off to a good start.)

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