Kids, Eat Your Veggies!

Posted on November 27, 2012 by

It is easier than ever to find gluten free substitutes for many products at most grocery stores.  Unfortunately for parents of children on a gluten free diet, gluten free is not automatically healthy – refined sugar, empty calories and processed ingredients still equal junk food whether or not the ingredient list also contains gluten.  Getting children to “eat healthy” is a difficult task, especially when it comes to vegetables.

Our son Alex is a notoriously picky eater, and it’s always a big deal when we get him to eat a new food, especially when it’s a vegetable.   The following are some of the recipes we have used that successfully introduced new veggies into his “repertoire.”  You can use these recipes or adapt them to the tastes of your own children and hopefully one or more of them will be well received.

Carrots:
Carrots are full of vitamin A, dietary fiber, antioxidants, and minerals.  Plus they are not green which makes them more acceptable to many children.  My wife got our son to accept carrots on a fairly regular basis by explaining the recipe to him (it has honey!  And cinnamon!), letting him partake in the preparation, and naming the recipe “Alex’s Carrots”, which all helped to give him some ownership in the recipe and more acceptable.

Alex’s Carrots

2 Cups carrots (pre-cut baby carrots or whole carrots, peeled and cut in 1 inch chunks)
1 or 2 Tablespoons honey
1 Tablespoon cinnamon
salt and pepper
oil
butter

Place the carrots in a bowl and toss with honey, cinnamon, salt, pepper and a little bit of oil.  Saute over medium heat until paring knife slides easily through carrots.  Finish by tossing with a pat of butter.  Optionally, you can place carrots on a baking sheet lined with foil and sprayed or rubbed with oil, and cook in a preheated 350 degree oven for 30 minutes.

Spinach:
Spinach has a high nutritional value and is extremely rich in antioxidants, especially when fresh, steamed, or quickly boiled. It is a rich source of vitamins A, C, B6 and B12, vitamin K, and many minerals.  For kids, it is a notoriously “icky” vegetable, but by calling this recipe a “pie” we got Alex to try it, and the bacon and melted cheese on top has kept him coming back for more.

For the crust, you can use your own gluten free recipe for pie crust or use the 8-inch variety sold by kinnikinnick (and available in the frozen foods section of many grocery stores).

Slice of Broccoli Pie

1 8-inch pie crust
8 oz frozen spinach
2 strips cooked bacon
5 eggs (4 is sometimes enough, do not overfill!)
2 oz milk or milk substitute
½ cup shredded cheese or cheese substitute

Preheat oven to 350.  Bake empty crust for 10 minutes until just firm.  Crumble bacon and place in pie crust.  Chop spinach and place on top of bacon.  Beat eggs with milk and pour into crust, covering spinach and bacon, until just below top of crust (it will rise slightly).  Bake in 350 oven until just set, about 20 minutes, Sprinkle cheese generously over the top, and broil until cheese melts and is just beginning to brown.

This recipe also works excellently with broccoli.

Broccoli:
Broccoli contains Vitamin C, dietary fiber, and several antioxidants.  We are lucky in that Alex has always been willing to eat a little bit of broccoli when it is served.   I find the simplest and most flavorful preparation is to roast the broccoli with just a little bit of oil, salt and pepper.

Roasted Broccoli

2 cups broccoli
olive oil
salt and pepper

Preheat oven to 425.  Toss broccoli in a bowl with olive oil to coat.  Arrange in single layer on baking sheet lined with foil and sprayed or rubbed with a little bit of oil.  Sprinkle with salt and pepper, to taste.  Bake at 425 until tender and beginning to brown, about 30 minute.

Sweet Potatoes:
Sweet potatoes are rich in complex carbohydrates, dietary fiber, beta-carotene,vitamin C, vitamin B6, manganese and potassium.  I adapted this recipe from one I found in Bon Appetit magazine.  Kids seem to like the square shape of the potatoes, and you can gussy up the recipe by alternating white and sweet potatoes and/or slipping some basil leaves between the squares.

Domino Sweet Potatoes

4 large sweet potatoes (preferably cyclindrical in shape)
Olive oil
Salt and pepper

Preheat oven to 425.  Cut the rounded sides off of the potatoes with a chef’s knife to leave a long square or rectangular cylinder (There will be quite a bit of waste here, but hey, these are potatoes).  Using a mandolin or sharp paring knife, slice the squared potatoes into ¼ inch slices.  Arrange the slices on a baking sheet, lined with foil and sprayed or rubbed with oil, so that the pieces overlap by about two-thirds of each slice.  Drizzle with olive oil, sprinkle with salt and pepper, and bake until tender and beginning to brown on the edges, about 35 minutes.

Domino Sweet and White Potatoes with Basil

 

 

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Dietary Intervention for Autism Spectrum Disorders

Posted on October 18, 2012 by

The following article was submitted for publication in the newsletter of a local gluten-free support group.

Dietary intervention as a treatment for autistic spectrum disorders (ASDs) has historically been viewed with some skepticism, but a rising number of experts are now endorsing this approach and more and more families are seeing positive results.  Many children diagnosed on the spectrum have similar biological profiles that include impaired digestive systems that make it difficult or even impossible for them to convert food into usable vitamins and minerals that are vital to essential biological (and neurological) processes.  By changing diet and eliminating inflammatory foods we can help the gut to heal, help the GI system to more effectively transfer food into usable nutrients, and allow the body and mind to react more positively to traditional therapeutic approaches for the treatment of ASDs.  It is an approach that I think all parents with special needs children should research and consider.

Autism is on the rise:  The latest report from the CDC indicates that 1 in 88 children has been identified with an autism spectrum disorder (ASD) with the rate almost five times more common in boys (1 in 54) than in girls (1 in 252).   With increased prevalence has come increased insight into both the causes and the treatment of ASDs.  While the cause is still not fully understood, it is now believed that a genetic predisposition involving several genes coupled with some sort of environmental trigger can result in a variety of autism related disorders.  And while it was once believed that the only effective treatment for ASDs was intense therapy, the most profound improvements are often realized when traditional therapy is coupled with methods to address underlying biological issues.

A gluten and dairy free diet is often reported to result in immediate behavioral improvements for children diagnosed on the autistic spectrum.  The Autism Research Institute (ARI) has conducted an ongoing poll of over 27,000 parents of autistic children to determine the effectiveness of various drugs, diets and other treatments for ASDs  (http://www.autism.com/pdf/providers/ParentRatings2009.pdf).  One of the most commonly used diets is a gluten and casein (dairy) free diet (“GFCF”).  69% of respondents who have tried this diet report behavioral improvements, versus only 3% that report a negative outcome. This is a more positive response than nearly any of the 70 or so other approaches included in the survey.

The gastrointestinal system is our first physical defense against viruses, bacteria, and other diseases and, when functioning properly, it converts vitamins and minerals into usable forms that are needed for biological functions and also needed by the brain for neurotransmitters to function properly.  When the system is impaired, as is so often the case for kids on the spectrum, food is not converted into usable nutrients, with negative effects on physical, biological, and mental development.  By eliminating gluten and dairy, two common inflammatory substances, from the diet, we can help heal the digestive system, which in turn allows the body to receive nutrients necessary for vital biological function.  Make no mistake, a special diet alone will not “cure” autism, nor can it even be guaranteed to have a positive effect in all cases, but by healing the body we allow the mind the best possible chance to respond to traditional therapy used to treat ASDs.

I personally have talked or worked with dozens of families who have experienced the benefits of implementing a GFCF diet as part of a program to treat ASDs.  For my own son, who was diagnosed on the autistic spectrum six years ago and is now fully recovered, dietary intervention was a key piece in solving the puzzle of autism.  It is a non-invasive approach that parents can incorporate largely on their own, and I strongly believe it should be given consideration by any family with a child who has been diagnosed on the autistic spectrum.

Mark Raisbeck is a trained chef and father of a child now recovered from autism, as well as a board member of the Gluten Intolerance Group of Shoreline East.  He hosts the blog site http://www.helpwithspecialneeds.com, and coaches families with a “whole body” approach to the treatment of autism spectrum disorders, including dietary and medical intervention.  He is not a doctor and any information contained herein should not be considered a substitute for professional medical advice.  Mark can be reached at mraisbeck@gmail.com.

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You Got a Diagnosis … Now What?

Posted on June 20, 2012 by

Recently a friend of mine was advised to have his nine-month old daughter evaluated, with the possibility that she might be on the autistic spectrum.  Having gone through it myself, I know the panic and despair that can follow, and the amount of conflicting and confusing information that can be obtained from the internet when it is searched at random.  I am not a doctor but, as a parent of a child fully “recovered” from autism, and as a friend, this is the advice I would give to a parent whose child receives a diagnosis of autism….

Dear Friend,

That was horrible news to hear about your daughter, and I surely hope it is unfounded, just a blip in development, and evaluations determine that she will soon be back on track.  I understand she went to a speech evaluation last week, wouldn’t make a sound, and then started blabbering baby talk on her own the other day, which is great and, if you don’t mind me saying, kind of funny.  I remember when we were at the same point with Alex, when you feel something is not quite right but you are not sure what it is, and I can appreciate the panic and despair you must be feeling – if you are at all like me you are losing a lot a sleep searching for resources on the internet and getting all kinds of conflicting information about what to do and how to proceed.

As you know, Alex is fully recovered and, hopefully, my experience can help you avoid some of the wrong turns we made, and avoid the dead ends and pitfalls that can easily occur.   I wish I could lay out an exact blueprint for you to follow but, unfortunately, each child is different and reacts differently to different therapies and interventions – there is a lot of trial and error involved.  “Hope for the best and prepare for the worst”, as they say, and in this case I think there is a lot you can do just in case things do not turn out as well as we hope.

Your first step (now!) should be to find a good developmental pediatrician who (unlike your “regular” pediatrician) will be specifically trained in identifying a wide range of developmental disorders and will be able to assist in diagnosing your child, providing written recommendations for services, and in helping design an individualized treatment plan for your child.   They know how the “system” works and they can help you get services from the state and recommend appropriate therapists for your child (many of these doctors have therapists “on staff”).

We made some mistakes in this area, and we had one doctor in Massachusetts who helped with biomedical intervention (discussed below), one or two developmental pediatricians in New York that helped with evaluations and recommendations, and another one in New York that we once hired at an outrageous price to provide an evaluation for Alex in a rush.  Ideally, you will find one doctor who can fulfill all of these roles, and I know of two in New York I can highly recommend, and a couple of others I have heard great things about.  Sadly, the services of these doctors are in much greater demand than their supply, and you will find that the first appointment you can get is six months or more away.  Call now, then turn on the charm and keep calling, looking for a cancellation – the earlier you get your foot in the door the better.

Your developmental pediatrician will be able to give you a better and more detailed diagnosis than the evaluations provided by the State evaluators.  In our case, the diagnosing psychologist from the State observed Alex for maybe 20 minutes before diagnosing him on the autistic spectrum.  His diagnosis was accurate, and I remain grateful for his honesty and some advice he gave us about “alternative” treatments, but it wasn’t until we went to an all-day evaluation with a developmental pediatrician and her team of therapists that we were able to pinpoint the type of therapy that Alex needed and to which he would respond.

There are many types of therapy for kids on the spectrum, and it can be confusing at first.  One fact that is nearly undisputed is that the earlier and more intensely you get therapy for your child, the better off they will be in the long run.  I think the best way to simplify things in this area is to divide it between behavioral therapy and all other types of therapy:

Behavioral Therapy
Most parents do not appreciate the fact that their typically developing kids, in large part, teach themselves by observing and mimicking other kids and adults.  Put them in a classroom with kids and a bunch of toys, or on the playground, and they quickly learn how to interact with the others.  For kids on the spectrum, its different — they do not enjoy interaction with others, they don’t appreciate the rewards, and they are often described as “being in their own little world.”  To interact “normally” they need to be taught, skill by skill, how to interact with others.  The variety of therapies available, each of which has strong proponents, can quickly become overwhelming — Floortime, DIR, ABA, TEACCH, RDI — you will no doubt be confused at first, then probably amazed at the speed at which you pick up the therapeutic vernacular.  As a parent, you must realize that each child is different, reacts differently to different types of therapy, and it is your job to observe and understand the goals, limitations, and effectiveness of each type of therapy as it pertains to your child.  You will need to figure out which type of behavioral therapy works for your child, and then continue to monitor and adjust things as your child progresses.

Other Therapy
The “basics” are speech and language (SLT), and occupational therapy (OT), and maybe physical therapy (PT).  In my opinion it is important not only to find therapists who are skilled at working with your child, but also skilled at communicating and working with other members of your therapy team.  It is great if your speech therapist can teach your child those hard consonant sounds he may be having trouble with, it is even more valuable it they can do so while reinforcing the play skills currently being worked on by your floortime therapist.  You can facilitate communication through team meetings, but it is tough to get everybody together on more than a semi-annual basis.  Its easier, and more timely, if your therapists email each other and, at the very least, take five minutes before or after each session to talk to you about what is going on with other therapies, and at school, and with your developmental pediatrician.

One more word about therapy – you want as much as you can get, and you are going to need to fight for it unless you want to pay privately.  We started out, after quite a bit of work, receiving 40 hours per week of one-on-one therapy for Alex, which consisted of about half ABA behavioral therapy, in addition to speech, occupational, physical, and other types of behavioral therapy.  Over the first year we slowly moved away from ABA and toward a more floortime based approach, as that seemed to be what Alex responded to best.  Once school age is reached (three years), you move to a different agency and it becomes harder to get that amount of therapy.  There are not enough therapists or funding to go around and you will be pushed hard to go to receive all your therapy at the school you go to, typically one or two hours each of speech, occupational and behavioral therapies.  We spent three full hours at our first IEP meeting arguing for five hours of speech instead of two, and then the meeting was ended.  We hired a lawyer when we went back, he sat in the corner and did not say a word, but I think his presence indicated to them that we were serious and knew our rights, and we ended up getting twenty hours of therapy, in addition to school, without much of an argument.  I know it sounds awful to have to hire a lawyer, but its my belief that they pay for themselves many times over if you avoid the need for privately paid therapy.  Additionally, its important to get services the first year, because it is much easier to keep services than to add to your plan the following year.  Each year your CPSE administrator will tell you how well your child is progressing in each area and that services can be reduced.  At that point you should put a shocked look on your face and explain that yes, she is progressing, but its because of the therapy, and we cannot stop now or she might regress, just one more year please…..

Finally, you must realize the importance of dietary and biomedical intervention and that autism is a whole body disorder, not just a disease of the mind.  There is plenty of controversy here, but suffice it to say I am as certain of the benefits of biomedical intervention as I am that the earth is round, and I know that Alex would not be recovered today without it.  I am quite confident that ten years from now special diets and biomedical intervention will be part of the standard approach for treating kids on the spectrum.

In my experience in talking with hundreds of parents and attending lectures and conferences, autistic spectrum disorders are nearly always accompanied by digestive and nutritional deficiencies, metal imbalances, and impairment of biochemical processes that need to be identified and addressed in order for the body and mind to function properly and to get the most out of therapy.  As our doctor in Massachusetts put it, “heal the body so the mind can respond to the therapy”.  Alex was on a daily regimen of supplements that often exceeded a dozen capsules (as well as creams, liquids, and an occasional injection), and it took tremendous parental and culinary ingenuity to figure out how to get all those capsules inside of a 3 or 4 year old who was also a picky eater.  But therapists were continually amazed at Alex’s remarkable progress and there were times, like when we began B12 shots twice a week, when they commented on how much better his behavior and focus was on days when he had the shots, without even knowing we had started something new.   You definitely need a good doctor (hopefully your developmental pediatrician) who can administer and interpret tests every six months or so, but I can promise you will not be sorry for the effort.  As a friend, I cannot stress strongly enough that this type of “whole body” approach, treating the physical concurrently with the mental and emotional, is the surest way to profound improvement or even recovery.

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Integrating Biomedical and Behavioral Therapies

Posted on June 20, 2012 by

I read an article, published last November but discovered by me today, about how biomedical intervention and behavioral therapy should be integrated, making them both more powerful.  I can attest to this strategy as a parent who was lucky enough to work with therapists who not only supported the use of dietary and biomedical interventions, but embraced the increased ability of my son to respond to and learn from the therapies they provided.  The article also mentions that parents are more likely to embrace a wide range of treatments for autism (such as biomedical and dietary interventions), than are professionals, who are more likely to accept methodologies that have been scientifically proven through studies (such as ABA) than to rely on anecdotal or word-of-mouth advice.  One interesting fact in the article is that ABA therapy was in existence 30 years before the studies were done to prove its efficacy.  Before that time, I have little doubt that it faced the same disdain from professionals as many of the alternative treatments do today.

It reminds me of a quote, from William James, on how society accepts new discoveries:

William James, 1842-1910

First, you know, a new theory is attacked as absurd;
then it is admitted to be true, but obvious and insignificant;
finally it is seen to be so important that its adversaries claim that they themselves discovered it. 

I have confidence that dietary and biochemical interventions will one day be standard protocol for treating ASDs, but I suspect they will have to travel the difficult road to acceptance outlined by Mr. James.

Here is the article, from The Autism File magazine (an excellent magazine, by the way):

http://www.autismfile.com/science-research/integrating-biomedical-behavioral

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“Of Course, Your Son Will Never Play Sports…..”

Posted on May 15, 2012 by

… That’s what a social worker told us very early on after Alex was diagnosed on the autistic spectrum.

I don’t mean to disparage all social workers.  We had another social worker, the caseworker assigned to us to oversee Alex’s whole case, who was instrumental in helping us navigate early intervention services, our first IEP meeting, and all the ins and outs of special services and special education in New York City.  But our second social worker, I’ll call her “Judy”, was an elderly woman assigned to my wife and I to help us cope, as parents and spouses, with the fact that our son had been diagnosed on the spectrum.   To put it mildly, she did not do much to help our situation.

When she first walked in the door of our apartment to meet Alex she had no greeting for him, rather, she took one look at him and exclaimed “At least he is appealing, that will hold him in good stead.”  After commiserating with us and explaining that we could try some therapy but that we should not have false hope and he may only get worse, she dropped the bomb, off-handedly, that he would, of course, never play sports.  She explained that kids on the spectrum almost always had physical development problems, strength issues, and neither the competitiveness or the social abilities to engage in team sports.

Again, this was very early on in the process, before we knew what to expect and where Alex was headed and what we could or couldn’t do about it, and I was still coming to terms with all the shattered dreams I had for Alex that I had to repress.  Playing sports was one of those dreams — many of my fondest memories as a child involve scoring soccer goals, getting a winning baseball hit, playing on tennis teams, basketball…. and I was lucky enough to have a father with the time and inclination to coach many of those soccer and baseball teams, making the memories even sweeter.  I can still remember, vividly, almost all of my teammates and many of my opponents and individual games and plays from as far back as 2nd grade.

I am happy to report that Alex is currently playing and excelling at both soccer and baseball, and that I am a coach for both teams.  Its a hectic schedule, practices and games each week, often overlapping, and lots of emails and phone calls from parents wanting to know the schedule, or which field to go to, or to report an illness or absence.  But I can’t help being reminded how far Alex has come when I see him quickly bond with new teammates, focus on the task at hand, and excel at something one social worker once told us he would never be able to do.  He is not the best player on the field, although he is a first grader and playing against many second and, in some cases, third graders, but he is pretty good, and would be proud to tell you that he is batting about .750 this year on the baseball team and almost scored his first goal in soccer last week.

As a parent of a child on the autistic spectrum you will no doubt find that many professionals, like our social worker, will try to manage your expectations and present a negative view of the potential development for your child.  I am not telling anybody to run away from people like this (they may still have positive things to offer), but the treatment of autism is no longer limited to therapy alone with the goal of improving behavior but not eliminating the cause.  I personally know of dozens of parents, and anecdotally know of hundreds of others, who have used diet and other biomedical interventions to allow their children to rid themselves of the digestive, immunological, and other disorders which afflict them, and to fully recover from autism.

 

Posted in Personal Anecdotes, Sports | 2 Comments

Using a Gluten Free Diet as an Intervention for Autism Spectrum Disorders

Posted on April 20, 2012 by

The following is an article I authored that was published in the newsletter of the Gluten Intolerance Group of Shoreline East, a local group offering tips and advice about going gluten free for people living on the Connecticut Shoreline.  Please visit their blog for some great recipes and advice about a gluten free diet: http://glutenfreeontheshoreline.blogspot.com/

Using a Gluten Free Diet as an Intervention for Autism Spectrum Disorders

Dietary intervention can be a safe, non-invasive, and often very effective treatment for special needs children that parents can implement themselves.  Since 1967 the Autism Research Institute (ARI) has collected data from almost 25,000 parents with children with Autistic Spectrum Disorders (ASDs) who have completed a questionnaire indicating the effectiveness of various treatments for autism.  Among the dietary interventions, the gluten and casein free diet (GFCF) has been reported to be amongst the most effective, with 65% of respondents indicating some level of improvement.  Personally, I have heard dozens (if not hundreds) of testimonials from parents who report favorably on the GFCF diet.

These results may seem difficult to believe for those who believe autism is exclusively a disease of and in the brain, but there is actually a very plausible scientific explanation behind these results once we understand that autism is often accompanied by many diseases of the gut including upper GI disease, autistic enterocolitis, intestinal dysbiosis, and leaky gut syndrome.

I am not a doctor, but I have learned that “leaky gut” is a rather casual sounding name for an official medical disorder that results in “holes” in the digestive track that are larger than normal, and underdeveloped cilia in the digestive track that allow food to move through too rapidly.  Gluten (found in wheat, barley, rye, most oats, and some other grains) and casein (found in most dairy products) contain peptides (a particle of food protein) that is normally digested and broken down into smaller particles before leaving the digestive tract. Leaky gut allows peptides to enter the bloodstream as complex particles that attach to opiate receptors in the body and brain.  Though not as powerful as opiates such as morphine or heroin, the biochemical reaction to these foods is similar, and the drugs are known to effect bowel function, the immune system, and of course brain function.

In my own experience with my son, who was diagnosed on the autistic spectrum at age two and is now a completely recovered first grader, we first went dairy free (with some skepticism), and then, upon seeing the positive results, went gluten free shortly thereafter, and he remains on a gluten and dairy free diet to this day.  I sympathize with parents who explain how difficult it is to eliminate these foods from a child’s diet – for many of these children, including my own son, these foods comprise most or not all of the existing diet (my son drank roughly 8 bottles of milk a day and ate almost exclusively yogurt, bread, crackers, and white pasta).  I have heard of implementation of the diet gradually, sometimes one meal at a time (breakfast for a couple days, then breakfast and lunch, then dinner too).  But my experience and advice is to go cold turkey and deal with the withdrawal symptoms all at once.  For my son, although the tantrums were plentiful, the removal of dairy (casein) from his diet was one of just a small handful of treatments that we tried that provided a true “light switch” result – the very next day he seemed more aware of his surroundings, more focused, and able to concentrate better with therapists, who commented on the change without being aware of the dietary change.  Removal of gluten did not provide the same sudden results, but it is my understanding that gluten takes much longer to work through the system and to eliminate, thus it is not surprising that the effects are more gradual.

In my opinion, all parents with children diagnosed with autism spectrum disorders should give the GFCF diet a try.  It can be implemented concurrently with other treatments and therapies and can be overseen by parents with little or no professional oversight.  Unlike some other diets (Feingold, Special Carb), the foods that need to be eliminated are easily identifiable and, more and more frequently, can be found all together in dedicated areas of major supermarkets.  The benefits are both scientifically supported and, perhaps more importantly, anecdotally confirmed by nearly two-thirds of parents who have tried the diet.  Finally, it is a non-invasive form of treatment that can be tried with no side effects and the ability to halt treatment at any time.

 

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Autism Rate on the Rise …. Again

Posted on April 6, 2012 by

Last week the CDC issued a report indicating that in 2008, the latest year for which study was available, 1 in 88 6-year-old American children have some sort of autism spectrum disorder. That number is up from 1 in 150 in 2002 and 1 in 110 in 2006. For boys, the figures are worse, with 1 in 54 affected in 2008 (almost 2% !!).  A summary of the report is here.

Autism Speaks, the National Autism Association, and many other advocacy groups were quick to point out that this is just one of a continuing series of alarms that autism spectrum disorders are becoming more prevalent and that government funding for research is not keeping pace. Testimony to Congress from Peter Bell, executive vice president of programs and services for Autism Speaks, can be found here.  Comments from National Autism Association Executive Director Lori McIlwaine can be found here.

There is some debate as to the methodology used in the report (14 districts nationwide were used as representative samples), and whether the numbers truly reflect the rate of increasing autism or also include more awareness and more agressive diagnosis of ASDs.  While I do not discount the possibility that some of the increase may be due to exogenous factors, I personally believe that the report confirms what we all know, that the rate of autism is rising at an alarming rate and, in the words of CDC Director Thomas Frieden, “One thing the data tells us with certainty – there are many children and families who need help,”

I believe that funding needs to continue to be directed toward finding the cause of autism, which we do not yet know.  We know there are some genetic links, and the latest research indicates that environmental factors, particularly toxins in the environment, most likely play a role.  From my own experience in talking to hundreds of parents, it is striking and a bit eerie to see how similar the physical profile is of kids on the spectrum:  digestive problems, immunological problems, elevated bad metals (mercury, lead), low level of good metals (magnesium, zinc), and a regression from normal development at the same time in life.

Further, I think funding should go towards education of teachers, doctors, therapists, and parents, each of whom comes in contact with dozens or hundreds of children each year that are afflicted with ASD disorders.  Many of these people are still operating under the belief that autism is a disorder of and in the brain.  In my experience, and from the latest research, it seems most probable that autism develops from a series of insults from our environment:  toxins in the air we breathe, water we drink, and food we eat, infections and antibiotics and, yes, even vaccines, that, at some point, tip the fragile biochemistry of a young child over the edge, manifesting itself in the behaviors that we call autism.

It scares me to think of the number of professionals that come in contact with many children each year that are unaware of the most basic signs of developing autism, nor are capable of giving advice for non-invasive treatment (diet and biochemical intervention) that has shown, in hundreds of cases, to augment traditional therapies to achieve more successful results and, in many cases, full recovery from autism.

 

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A Summary of the March 29, 2012 CDC report on the prevalence of autism spectrum disorders (ASDs)

Posted on April 6, 2012 by

from the CDC website (http://www.cdc.gov/)

Data and Statistics

Prevalence

  • About 1 in 88 children has been identified with an autism spectrum disorder (ASD) according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network. [Read article]
  • ASDs are reported to occur in all racial, ethinic, and socioeconomic groups. [Read article]
  • ASDs are almost 5 times more common among boys (1 in 54) than among girls (1 in 252). [Read article]
  • Studies in Asia, Europe, and North America have identified individuals with an ASD with an average prevalence of about 1%. A recent study in South Korea reported a prevalence of 2.6%. [Data table Adobe PDF file]
  • About 1 in 6 children in the U.S. had a developmental disability in 2006-2008, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism.  [Read article]

 

Photo: Prevalence of ASDs with 8 Year olds

 

Learn more about prevalence of ASDs »

Learn more about the ADDM Network »

Learn more about MADDSP »

 

Risk Factors and Characteristics

 

  • Studies have shown that among identical twins, if one child has an ASD, then the other will be affected about 36-95% of the time. In non-identical twins, if one child has an ASD, then the other is affected about 0-31% of the time. [1-4]
  • Parents who have a child with an ASD have a 2%–18% chance of having a second child who is also affected.[5,6]
  • ASDs tend to occur more often in people who have certain genetic or chromosomal conditions. About 10% of children with autism are also identified as having Down syndrome, fragile X syndrome, tuberous sclerosis, and other genetic and chromosomal disorders.[7-10]
  • The majority (62%) of children the ADDM Network identified as having ASDs did not have intellectual disability (intelligence quotient <=70). [Read article]

 

Most recent intelligence quotient (IQ) as of age 8 years among children identified with autism spectrum disorders (ASDs) for whom psychometric test data were available,* by site and sex- Autism and Developmental Disabilities Monitoring Network, seven sites†, United States, 2008

Intelligence quotient (IQ) of children aged 8 years with an autism spectrum disorder (ASD) for whom psychometric test data were available, * by site and sex (IQ) score-Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2006[D]

 

 

  • Children born to older parents are at a higher risk for ASDs. [Read summaryExternal Web Site Icon]
  • A small percentage of children who are born prematurely or with low birth weight are at greater risk for having ASDs. [Read summaryExternal Web Site Icon]
  • ASD commonly co-occurs with other developmental, psychiatric, neurologic, chromosomal, and genetic diagnoses. The co-occurrence of one or more non-ASD developmental diagnoses is 83%. The co-occurrence of one or more psychiatric diagnoses is 10%. [Read summary]External Web Site Icon

 

Diagnosis

 

  • Research has shown that a diagnosis of autism at age 2 can be reliable, valid, and stable.  [Read summaryExternal Web Site Icon] [Read summaryExternal Web Site Icon]
  • More children are being diagnosed at earlier ages—a growing number (18%) of them by age 3. Still, most children are not diagnosed until after they reach age 4. Diagnosis is a bit earlier for children with autistic disorder (4 years) than for children with the more broadly-defined autism spectrum diagnoses (4 years, 5 months), and diagnosis is much later for children with Asperger Disorder (6 years, 3 months). [Read summaryExternal Web Site Icon]
  • Studies have shown that parents of children with ASDs notice a developmental problem before their child’s first birthday. Concerns about vision and hearing were more often reported in the first year, and differences in social, communication, and fine motor skills were evident from 6 months of age.[Read summaryExternal Web Site Icon] [Read summaryExternal Web Site Icon]

 

Economic Costs

 

  • Individuals with an ASD had average medical expenditures that exceeded those without an ASD by $4,110–$6,200 per year. On average, medical expenditures for individuals with an ASD were 4.1–6.2 times greater than for those without an ASD. Differences in median expenditures ranged from $2,240 to $3,360 per year with median expenditures 8.4–9.5 times greater. [Read articleExternal Web Site Icon]
  • In 2005, the average annual medical costs for Medicaid-enrolled children with an ASD were $10,709 per child, which was about six times higher than costs for children without an ASD ($1,812). [Read summary]
  • In addition to medical costs, intensive behavioral interventions for children with ASDs cost $40,000 to $60,000 per child per year.[11]

 

 

References

  1. Rosenberg RE, Law JK, Yenokyan G, McGready J, Kaufmann WE, Law PA. Characterisitics and concordance of autism spectrum disorders among 277 twin pairs. Arch Pediatr Adolesc Med. 2009; 163(10): 907-914.
  2. Hallmayer J, Cleveland S, Torres A, Phillips J, Cohen B, Torigoe T, Miller J, Fedele A, Collins J, Smith K, Lotspeich L, Croen LA, Ozonoff S, Lajonchere C, Grether JK, Risch N. Genetic heritability and shared environmental factors among twin pairs with autism. Arch Gen Psychiatry. 2011; 68(11): 1095-1102.
  3. Ronald A, Happe F, Bolton P, Butcher LM, Price TS, Wheelwright S, Baron-Cohen S, Plomin R. Genetic heterogeneity between the three components of the autism spectrum: A twin study. J. Am. Acad. Child Adolesc. Psychiatry. 2006; 45(6): 691-699.
  4. Taniai H, Nishiyama T, Miyahci T, Imaeda M, Sumi S. Genetic influences on the board spectrum of autism: Study of proband-ascertained twins. Am J Med Genet B Neuropsychiatr Genet. 2008; 147B(6): 844-849.
  5. Ozonoff S, Young GS, Carter A, Messinger D, Yirmiya N, Zwaigenbaum L, Bryson S, Carver LJ, Constantino JN, Dobkins K, Hutman T, Iverson JM, Landa R, Rogers SJ, Sigman M, Stone WL. Recurrence risk for autism spectrum disorders: A Baby Siblings Research Consortium study. Pediatrics. 2011; 128: e488-e495.
  6. Sumi S, Taniai H, Miyachi T, Tanemura M. Sibling risk of pervasive developmental disorder estimated by means of an epidemiologic survey in Nagoya, Japan. J Hum Genet. 2006; 51: 518-522.
  7. DiGuiseppi C, Hepburn S, Davis JM, Fidler DJ, Hartway S, Lee NR, Miller L, Ruttenber M, Robinson C. Screening for autism spectrum disorders in children with Down syndrome. J Dev Behav Pediatr. 2010; 31:181-191.
  8. Cohen D, Pichard N, Tordjman S, Baumann C, Burglen L, Excoffier E, Lazar G, Mazet P, Pinquier C, Verloes A, Heron D. Specific genetic disorders and autism: Clinical contribution towards their identification. J Autism Dev Disord. 2005; 35(1): 103-116.
  9. Hall SS, Lightbody AA, Reiss AL. Compulsive, self-injurious, and autistic behavior in children and adolescents with fragile X syndrome. Am J Ment Retard. 2008; 113(1): 44-53.
  10. Zecavati N, Spence SJ. Neurometabolic disorders and dysfunction in autism spectrum disorders. Curr Neurol Neurosci Rep. 2009; 9(2): 129-136.
  11. Amendah, D., Grosse, S.D., Peacock, G., & Mandell, D.S. (2011). The economic costs of autism: A review. In D. Amaral, D. Geschwind, & G. Dawson (Eds.), Autism spectrum disorders (pp. 1347-1360). Oxford: Oxford University Press.

 

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Report Card

Posted on March 22, 2012 by

Alex got his second report card from first grade last week, and it was a mirror image of his first:  With a grading system of plus, check and minus he got a plus in all 13 graded subject areas, and 10 out of 14 plusses in work habits (it seems he gets overenthusiastic about learning, and calls out too much).  Comments included “makes friends easily”, “participates enthusiastically”,  and “works well independently and seeks help when needed.”  While such a report card is cause for celebration in any household, in our case it is cause for reflection and a reminder of just how far Alex has come.

When I reflect on Alex’s past, I remember how difficult it is to come to terms with a diagnosis of autism.  Subconscious or otherwise I think we all have dreams for our children, that they will be successful, well-liked, smart, athletic, attend a good college, make a difference in the world….  One of the most difficult things about dealing with the diagnosis is to suppress those dreams and hope instead that he or she can just be “normal.”

Alex’s success is in no small part due to his own hard work and perseverance.  Before he was three years old he took a school bus to and from school and began a program that included  20 hours of school and 25 hours of one-on-one therapy per week and continued that schedule for three years.  To make things more difficult for him he faced an ever changing diet and biomedical intervention that included dozens of supplements, biweekly shots of B12, and periodic chelation.  He continues to this day (for the most part) to show incredible maturity in meeting the challenges of being a first grader and growing up.

But I am also reminded of Malcolm Gladwell’s book Outliers, in which it is pointed out that success is often a product of circumstance as much as individual ability and achievement, and I realize that Alex had almost every resource imaginable in order to get where he is today:  Two smart caring parents with the financial means to each leave a job while remaining in New York City where top schools, therapists, and doctors are in abundance, the ability to advocate to receive services and to find and retain the best doctors and therapists, the openmindeness to try and to evaluate, and the ability to pay out of pocket if necessary, for “alternative” treatments such as a change in diet, biomedical intervention, and a variety of speech and occupational therapy techniques.

We are extremely grateful for the confluence of factors that allowed for Alex’s recovery and allow him to bring home a report card that reflects his success.  But this is not just a story of self-congratulations for Alex or for his parents.  Rather, I hope it serves to show others with similar challenges that there is hope, and there is possibility.  Unfortunately there is no magic bullet, each child is different and there is a certain amount of trial and error with any type of therapy or treatment, and each child must undergo testing and careful observation to see what works and what does not.  But I do believe that the last ten years has seen some incredible breakthroughs in the diagnosis and treatment of autism, and that parents willing to explore these new types of treatment face possibilities of improvement or recovery that were not possible years ago.

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The Wonderful World of Mashed Potato Flakes

Posted on March 4, 2012 by

Crispy Salmon, Plated with Domino Potatoes (see post for recipe)

When I was in cooking school, one of the chefs once told me that 90% of restaurant cooking was “making it crispy on the outside, tender on the inside.”  In classic french technique this is done with proteins by utilizing a three step process involving a light coating of flour, egg, and then breadcrumbs before sauteing in a pan.  For the home cook (including myself), this involves too much space and time and creates too much mess to be a viable option on a regular basis.  Plus, if you or someone in your family is gluten free, you have to use special flour and gluten free bread crumbs. I have found a wondrous product that does a pretty good job of creating a crunchy and flavorful exterior in only one step:  mashed potato flakes, available at your local supermarket.  Also known as instant mashed potatoes.  My “go to” meal for my son and daughter are chicken tenders or salmon fillet, dredged in mashed potato flakes, and sauteed in olive oil.  I like to use a heavy pan (cast iron is my favorite) and the result is a nicely browned crust that is truly restaurant quality.

Crispy Salmon Filet
serves 4

1.5 lbs salmon filet
1/2 cup mashed potato flakes
Olive oil
salt and pepper

Preheat a heavy pan on medium high. Skin (and debone if necessary)

Crispy salmon filets

salmon filet.  Cut into serving size portions and season with salt and pepper. Add olive oil to pan, a little more than necessary to just coat the bottom of the pan. Dredge salmon in potato flakes on both sides, add to pan. Cook until well browned on one side, about 6 minutes, then flip and cook until cooked through, about 4 minutes more.

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