Archive for the ‘Vaccines’ Category

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Hope and Understanding the New Autism

Sunday, May 5th, 2013

Stories describing new relationships occurring within the autism epidemic appear every day. Families wonder about their significance; whether they, in some way, can better understand why their children are affected by the condition (? older fathers, overweight mothers, living near highways, premature births, anxiety, copy number variations, etc.) and the significance of new treatments appearing on the horizon as it applies to their situation.

For example, the report of a “vaccine” FOR autism attracted attention recently.
The good: The thinking goes that killing Clostridia (an especially nasty cootie) with this anti-biofilm product could reduce autistic behaviors in many patients. Importantly, it validates “complementary and alternative” medicine’s insistence on the gut-brain connection in autistic behaviors.
The bad: It’s only been tested in rabbits.
The ugly: “The vaccine might take more than 10 years to work through preclinical and human trials, and it may take even longer before a drug is ready for market…”

Regarding treatment, UC San Diego recently reported “Antipurinergic Therapy Corrects the Autism-Like Features in the Poly(IC) Mouse Model”.
The good: The drug, suramin, targets a cell messaging system that produces a metabolic response to stress. “According to a new theory, autism is strongly linked to this pathway… Scientists in the U.S. found that the drug corrected 17 types of abnormality linked to autism in genetically modified mice, including social behaviour problems.”
The bad: It’s only been tested in mice.
The ugly: Mice aren’t men.

At the SFARI conference this past week in Spain, research was presented that supported the environmental theories of causation.
The good: There were significant presentations reporting associations with air pollutants and insecticides. Also, the topics of proper prenatal and pre-pregnancy vitamin and mineral intake were popular offerings.
The bad: ”The new studies showed only associations and couldn’t prove causality, and each factor itself likely accounts for a small portion of the risk for autism, researchers say.”
The ugly: ”Genetics likely account for about 35% to 60% of the risk, many researchers say.” Genetics accounting for susceptibility is not that helpful until the downstream abnormality is identified.

The report of placental changes signaling an increased association with later autism got a fair bit of press this week.
The good: The test “…yielded a 92% specificity rate for predicting ASD risk status — and …yielded a 99.9% specificity rate. The differences between the 2 groups were amazingly, awesomely different.” The earlier the red flag, the better.
The bad: “… this test will not be able to identify all individuals who might develop autism.”
The ugly: If we don’t do anything about the red flags that we see already (“Let’s wait until he’s older…”), is this information that helpful?

Another recent article that points to early involvement was Deviance in fetal growth and risk of autism spectrum disorder in the American Journal of Psychiatry.
The good: ”… poor fetal growth was more strongly associated with ASD with intellectual disabilities than without. Regardless of fetal growth, preterm birth increased ASD risk.” I repeat, the earlier the red flag, the better.
The bad: In my many years caring for high risk premies and diabetic babies (the very small and very large), when I was Director of our Follow Up Clinic, ASD was not being recognized/diagnosed.
The ugly: Ditto to the last ugly.

The most important points that we can glean from such literature are:

1. More recognition of the epidemic, and therefore more research that will lead to treatments – eventually, even if it’s just avoidance of the toxic offenders.

2. Earlier recognition of red flags that a child may be at-risk, with earlier diagnosis, instead of “he’s a boy – they talk late.” Hopefully that means earlier interventions.

3. More recognition of the medical nature of the condition.

 

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Posted in >ALL<, Autism Therapies, Conferences, Earliest Red Flags, News-Maybe-Worthy, Reversing autism, Special Therapies, Speech and Language, Vaccines | No Comments »

Pregnancy, the Flu, and Autism

Sunday, November 25th, 2012

This blog is about what we don’t know about pregnancy and the flu as it relates to the epidemic of ASD. The popular press recently re-reported one specific finding from an article in the medical journal Pediatrics, entitled Autism after Infection, Febrile Episodes, and Antibiotic Use During Pregnancy: An Exploratory Study. Does that title make it look like the flu during pregnancy increases the risk of autism in the offspring?

ABC News, ABC News, Reuters, The Huffington Post, and just about every other news agency loudly declared this small, incidental finding as if it were some solid medical fact. I doubt that most readers went farther than the title, and so now there is another confusing piece of information in the quagmire of ignorance that presently surrounds this enigmatic condition.

What article really said:
The Danish researchers looked at the records of ~100,000 8-14 year-olds who were in the national registry from 1996-2002, of which < 100 fit the ASD diagnosis. The key variables – ASD, Fever, and Antibiotic use – were reported by (very non-specific) telephone interviews during the pregnancy or shortly thereafter.

1. Mild common infections and fevers were not associated with autism
2. Evidence “suggested” that there was a 2X increase in ASD when there was a maternal influenza infection
3. Prolonged fever “caused” a 3X increase of ASD
4. The use of various antibiotics during pregnancy was potential risk factors for ASD (BTW, did any of the popular press report this one?)
5. The final conclusion was “the few positive findings are potential chance findings.” (I didn’t see this reported, either.)

What is known about this situation:
There is surprisingly little information about the flu and autism. An earlier study (1990) questioned viral-type illness during gestation as a possible cause of ASD. Also, there are models which seem to correlate brain abnormalities in the offspring of infected pregnant animals. The evidence is not strong in humans, however, so more studies are required.

Maternal fever from other causes has also been implicated as leading to ASD in children. There are even concerns about whether fever-reducing medications are a culprit in this epidemic.

The CDC continues to recommend flu shots during pregnancy. There is very little information about which part of the pregnancy is more important or risky (that should matter), or specifically searching for ASD as an outcome measure.

What should your family do about this latest information:
Well, some good consequences of this VERY WEAK science is that it does tie autism to inflammation, highlights the epidemic, and gives readers pause about whether the flu shots could be related to autism as well. As in most of the other studies which show increases in ASD tied to other common occurrences such as the use of oxytocin for delivery, increased maternal weight, increased paternal and maternal age, smoking, drinking alcohol, hot tubs, and women who attend sporting events (that’s just a joke), it doesn’t really explain anything.

In the blurb where the Pediatrics journal documents “What this study adds“, the editors should have written “Very Little“.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, News-Maybe-Worthy, Vaccines | No Comments »

Top 10 Autism Elevator Answers

Saturday, September 22nd, 2012

My practice is fortunate enough to involve young people as student ‘interns’, who learn by helping out with the patients and performing other office duties. Occasionally, Karen, our patient and efficient Practice Administrator, even lets me use their services for data collection and research.

Recently, one of the new recruits to our developmental clinic asked Question #1, (“What do I think causes autism?”) and her reaction (less-than-satisfied) to my explanation (about susceptible individuals whose immune system is, or becomes ‘dys-regulated’ by our poisoned world), just didn’t cut it. Modern thinking is that patients can’t recover from autistic signs and symptoms. “Autism is genetic and medicine can’t do much about the outcome,” pretty much covers current beliefs by people who do not have autistic family members or have not searched the web endlessly for answers. Even the remarkable progress that affected young children can achieve with ABA, S&L, OT, PT and other appropriate therapeutic interventions does not seem to impress the uninitiated.

I usually offer that human epidemics are environmental and the discussion slips into a circular discourse that begins with Question #1-a, “Is autism really an epidemic?” So, in an effort to help our readers who are often challenged to produce quick answers, here’s a list that might be helpful:

1. Has autism really increased, are you guys just recognizing it more, or is the diagnosis added to other syndromes?

It’s really increased, we’re recognizing it more, and the diagnosis can be included with other congenital conditions.

2. So, is it really an epidemic?

Yes.

3. It’s sorta been proven that vaccinations don’t have anything to do with it, right?

The individual vaccines have been studied, but the schedules have changed dramatically. There are lots of parents and even doctors who know of stories where the vaccine was more-than-coincidentally related to a child’s regression.

4. I heard that it might be due to poor parenting, is that true?

There hasn’t been any epidemic of ‘Refrigerator’ mothers (see #2). In fact, the families are devastated, they care VERY MUCH about their child, and they spend a great deal of resources searching for help.

5. I heard that it was related to older fathers, is that true?

They have been around longer than the increase in autistic children.

6. I heard that it was related to older mothers, is that true?

Ditto #5

7. I heard that it was related to overweight mothers, is that true?

Ditto #5

8. I heard that it is related to the immune system, is that true?

Oh, that’s right, I never heard this one. It’s just the most likely explanation.

9. But, the doctors all say that it is genetic, right?

There are so many different chromosomes and genes that have been implicated. It must be that genetic differences only identify susceptible individuals.

10. So, you think that it’s the environment?

The environment affecting susceptible individuals, yes.

I really want to explain that, “It’s the perfect storm of minor genetic differences, possibly insignificant in previous millennia, acted upon by various, multiple, new and foreign substances. The interaction appears to affect an increasing percentage of developing infants…” But, the door is closing, “Going down, children’s toys, ladies lingerie…”

At the present level of knowledge, even texts such as Dr. Martha Herbert’s The Autism Revolution leave many new directions for research. Dramatic sound bites and headlines proclaiming autism cures rarely illuminate the situation. For future reference, you can print The List to carry in your pocket or download my TheAutismDoctor-Quick-Answer-List app ;)

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, Patient experiences, Reversing autism, Speech and Language, Vaccines | 2 Comments »

Where to Start when Autism is Diagnosed

Sunday, July 22nd, 2012

The first challenge that parents encounter when faced with a child who may not be developing in a typical fashion is getting a correct diagnosis. One doctor says “PDD-NOS,” another claims “Just a speech delay and some ADHD,” and yet another specialist suggests ”Let’s wait and see.” We are knee-deep into an autism epidemic, Ladies and Germs! If your child produces few words by 15 months (or displays a loss of words), has problems with eye contact or socialization, exhibits repetitive behaviors and has signs of core hypotonia (central weakness), you are dealing with the red flags that signal ASD.

The top Google searches for what to do about your suspicions include an inaccurate (at least, dated) list of signs and symptoms, an accurate reference article by the NIH, a parent guide that offers good advice, a fairly helpful (but less-than-practical) step-by-step guide, a webMD primer, and several columns expressing sympathy and empathy. What they all seem to have in common is the advice that parents need to learn everything they can in order to help their child. While that is an admirable and helpful pursuit, isn’t it more common, when a family member is struck with a complicated medical condition, that a trusted medical professional is pursued in order to assist in the best course of action? Doctors take note – you have been left out of the loop.

Where to start:

1. Forget about all of the other opinions and seek a physician who understands that “high risk” for autism means close observation and initiating therapies to address the developmental condition ASAP. If the child is simply a “late bloomer,” so what? Unfortunately, this is often the most difficult step. Generation Rescue’s website is a good start, and the emerging Medical Academy of Pediatric Special Needs is working on providing significant resources.

2. Parents desire to do everything they can, within reason, to help their child. In an abundance of caution, initiating intervention at the earliest possible age can be therapeutic at best and reassuring at least. ’Kick-starting’ speech and language and/or assisting developmental milestone acquisition with physical therapy are some great ways to get started. The family will become more comfortable about the diagnosis, understand ‘the journey’ better, and will frequently get to observe some quick improvement.

3. A popular reflex after searching the web is for parents to give the gluten-free/casein-free diet “a try.” Talk About Curing Autism offers a great deal of helpful information on this intervention. While this step may be important, there are some pitfalls that accompany this decision. If a child who is put on a casein-free (milk protein) diet is very sensitive to soy, the diet may not appear to be ‘working’, if there was a change to soy milk. Likewise, if the child is eating lots of peanut butter, for example, and is allergic to it, the diet may not appear to be helping. Finally, if the child has no problem with dairy or wheat, the diet won’t be helpful. Also, dietary intervention sometimes takes time (months) and patience before improvements can be seen in communication or behavior.

4. If you haven’t done step #1 yet, it belongs here: Find a competent autism practitioner who understands and has TREATED autism (not just diagnosed it). If you don’t do this step, you are getting into territory which can result in little improvement, significant regression, or a sense that you are not doing “everything that can be done.” An appropriate medical workup should include a blood count, liver, kidney and thyroid function, nutritional health, and gastrointestinal testing. Blood, urine and stool samples may be required in order to gather such valuable and pertinent information about the patient.

5. Make sure that the child’s overall medical condition is clear. Simply because the child appears healthy, don’t forget that they are relatively non-verbal, resistant to pain and have a narrow range of expressive behaviors. How do we really know if the child is healthy unless appropriate lab work has been collected and reviewed so that your child is in top shape? I had a patient last week who was mildly anemic. Now, it may not seem like much, but, why worry about HBOT (which is an expensive and resource-intensive intervention that brings oxygen to distant tissues), when all a patient may have needed was a bit more iron in their diet? Similarly, gut-related signs and symptoms are rampant in ASD, and an astute practitioner needs to ferret out and treat such maladies.

6. Follow a protocol. This is one of the most difficult parts of the initial treatment, because apparent regression can follow even the most uncomplicated interventions. For example, the negative behaviors that may result from bacterial or fungal ‘die-off’ when strong probiotics are initiated is frightening to families and requires coaching and counseling in order for the patient to achieve G-I balance. This step alone has discouraged too many parents from continuing biomedical intervention. As we increase cellular energy with supplementation, I frequently advise parents, “The side effect of giving a patient more energy is that the child will have more energy!” For aggressive or disruptive children, this is no small matter and there may need to be some changes or additional supplements to handle that alteration. In practically all areas of medicine, following protocols and altering them as things change is the hallmark of a successful course of action.

That’s it. Just a few steps that should be taken once the diagnosis is entertained to insure that, by today’s standards, everything that CAN be done is being done for your potentially-affected child.

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Posted in >ALL<, AD/HD, Alternative and Complementary Medicine for ASD, Earliest Red Flags, HBOT for ASD, News-Maybe-Worthy, Patient experiences, Reversing autism, Vaccines | No Comments »

Vaccine Awareness

Friday, June 8th, 2012

I can’t make this stuff up. One day after I pointed out that the CDC caused/found a ‘pseudo-epidemic‘, this report popped up on my Pediatric Radar Screen:

CDC vaccines for children might have been improperly stored

The Office of the Inspector General analyzed a sample of programs with the highest volume of vaccines ordered in 2010 and found that vaccines stored by 76% of providers were exposed to inappropriate temperatures for at least 5 cumulative hours over the 2 weeks. (No word on how many OVER that number of hours).

Medical News reporter Kristina Fiori story wrote, “Childhood vaccines administered via a free federal program may be inappropriately stored, which could affect their potency and efficacy, according to government inspectors… The American Academy of Pediatrics, which wasn’t involved in the study, said in a statement that it ‘encourages all practices to continue monitoring vaccine storage and handling… The AAP noted that despite these issues, the vaccines “were not found to be unsafe, and revaccination of children is not needed.”

So, the Academy, which wasn’t involved in the study, knows that the vaccines are safe. How do they know that?! The story went on to explain that although the potency could have been affected, the poor kids who got the stuff won’t have to get an extra shot. Hooray for those children. I wonder, though, if the shots were incorrectly stored and administered to a more affluent community, if the CDC would have made the same recommendations. I mean, they said the inoculation might not work. If the children need them so much, why wouldn’t they need the missing dose? Maybe it’s the $3.6 billion that is paid to those public programs.

Then, there is this statement: “The report also revealed that 13 providers stored expired vaccines together with unexpired ones, increasing the risk of handing out the wrong vaccine.” Are you kidding me? Has anyone gone out and looked at the outcome of those children who received the expired or incorrect products? We’re in the middle of an autism epidemic now, and this could be very important information. Does anyone think that the “studies that have shown vaccine safety” used old or incorrect product?

I won’t belabor this point any longer other than to officially complain that, as a pediatrician and as a citizen, I find this stuff appalling. As an advocate of sensible vaccination protocols, these kinds of revelations make it really difficult to convince the public that they are protected or safe.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, News-Maybe-Worthy, Patient experiences, Vaccines | 2 Comments »

Autism Risk

Sunday, June 3rd, 2012

Every week, it seems, another media report surfaces about a newly-discovered association between some variable and autism. Often, that research represents non-randomized, retrospective, and computer-analyzed information that is neither insightful about the epidemic nor representative of the present situation. Furthermore, there are particular unsubstantiated relationships that might unnecessarily serve to make a parent feel increased guilt and concern about possible involvement in their child’s condition. This is what the medical landscape looks like from the public’s perspective:

All of the listed associations represent studies that have been published claiming a relationship. As a practicing neonatologist for most of my medical career, I can assure you that I have attended to thousands of newborns who were subject to very harsh pregnancies, labors and deliveries that were fraught with multiple complications. Our NICU follow-up care through the end of the last century did not include the recognition that autism was becoming more prevalent, even though we were specifically checking for developmental delay, among other outcomes.

Lately, there is something going on – over and above these listed conditions – that sends susceptible fetuses and infants over the edge so that they experience ASD symptoms and signs. More attention to purpose and humanity is needed, even in research, not merely machine meta-analyses of mined data.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, Patient experiences, Vaccines | 1 Comment »

Doctors Firing Patients for Failure to Vaccinate

Friday, March 30th, 2012

Professor Art Caplan, from the University of Pennsylvania Perelman School of Medicine, blogged the other day about what doctors should do about the alarming number of patients who refuse vaccination for their child. Since I will probably not be debating the noted medical ethicist in person any time soon, I want to post my reply to his arguments.

The vast majority of pediatricians feel that allowing non-vaccinated patients in their office puts the other children at risk for infectious diseases. Also, when such a child becomes ill, the doctor cannot ascertain whether the problem is minor or one of the major preventable diseases and so medical decisions become more difficult. Finally, the rest of the population is at risk because of the reckless choices made by such parents. Dr. Caplan stated his position, the same as that of the AAP, which is that pediatricians should not dismiss patients for this lack of compliance.

“With respect to the safety issue, it isn’t a bad thing for a parent to worry about safety. It’s that they are listening to inappropriate sources.”

As I have written previously in this forum, there are no randomized, prospective, controlled studies (the gold standard of research) that demonstrate the safety of the present vaccine schedule. Heck, that’s what most researchers complain about with alternative medical protocols, yet they do not hold themselves to the same standard. What parent would allow their child to be part of a study in which half of the participants get a thorough evaluation, detailed history including previous vaccination intolerance, fewer vaccines each time and longer periods between the ‘shots’, while the control group gets the present protocol? Um… I pick the study group for my children!

What institutional review board would say that, yes, we should test titers (how immune the child already is, from previous vaccinations) before giving the next doses, so that children only get that which is necessary? I mean, who has the money for that schedule? So, we just do what is ‘safe’ for everybody even if it may not be so for the individual. The ‘herd’ is protected and the good of the one (or of the few) takes a back seat to the good of the many.

From my perspective, which is that of an older, experienced pediatrician, what I have witnessed is a schedule that keeps increasing as far as the number of vaccines and asks that children get vaccinated at younger and younger ages than that which I had been used to. And, evidence is lacking that such a schedule is safe or any more effective than a slower, more conservative protocol. That “there are no studies to show that vaccines cause autism” is merely a truism…there are no studies to show that the way the vaccines are given is safe for every infant and child.

So, I have some advice for Professor Caplan and the rest of the traditional medical community that is much more helpful than merely insisting that concerned parents are misguided or ignorant of the situation.

Listen to why the parents feel that way and address those specific issues. If the child had a significant fever from a previous vaccine or a sibling (or the infant to be vaccinated) has developmental issues, it should be a red flag that causes the pediatrician to be concerned as well.

The office staff has no right to raise their voices in anger or roll their eyes with disbelief when a parent expresses their concern about vaccine safety. I assure you, if they were parenting an autistic child, they would display a much more sympathetic tone.

The pediatrician should take a look at which vaccines are the most important for the reluctant parent and treat the individual infant. The doctor should try to convince parents about the risks of a child getting those diseases which are preventable and cause significant long-term disabilities. A hepatitis negative mother who is going to choose to keep her child at home for the first years of life has a pretty low chance of having a child who develops either Hepatitis A or B. When presented in this manner, I have found even the most resistant parent gives a great deal more thought to giving some vaccines, at least.

Ask about the reaction from previous ‘shots’; whether the child needed a great deal of Tylenol or if they seemed to have other problems such as vomiting, diarrhea or feeding problems. In fact, doctors don’t give vaccinations – the office nurse does – so don’t be so sure that particular base is covered. And, filling out a pre-printed form is basically meaningless when the family has real concerns.

Reluctant parents can sometimes be aided by doing ‘titers’ – that is, finding out how resistant the child already is to a disease, and work with the family to address the most important and high risk conditions. In a similar manner, checking the child’s blood count is sometimes helpful. I had one local pediatrician delay giving ‘shots’ because of a markedly decreased white blood cell count in the sibling of an autistic patient. By the way, the package insert on many live-virus products states that it shouldn’t be used if the patient is allergic to eggs. Ever get your kid tested for egg allergy??

Finally, I want to be clear about my personal position. It is not the vaccinations themselves that I find objectionable, it’s the schedule, lack of evidence for safety, and the intractable opinions of most medical personnel.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, News-Maybe-Worthy, Patient experiences, Vaccines | No Comments »

Andrew Wakefield – A Follow-Up Autism Visit

Tuesday, March 13th, 2012

TheAutismDoctor cannot help but weigh in on the recent judge’s reversal of the expulsion of Dr. Walker-Smith, a co-author of the controversial 1998 paper in the British Journal The Lancet, entitled Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children [Early Report]. The popular press has been quick to point out another author, Dr. Andrew Wakefield, as the quack who unnecessarily alarmed the civilized world about vaccine safety. Heck, the media has made British journalist Brian Deer, who spent over 7 years of his life ‘researching’ the story, a hero for uncovering the ‘conspiracy’ and ‘unethical’ goings-on by Dr.W.

Anderson Cooper believes Deer; and pretty much, didn’t let Dr. Wakefield complete one entire sentence during their interview.

No ‘DAN!’ practitioner is immune from this controversy. I rarely explain my Special Needs Pediatric Practice to lay people or even professionals without being asked the question, “What do you think about that guy in England who got kicked out because he said that the MMR causes autism?” “Have you read the original paper?” I ask. “Are you aware that the title does not even contain the  ’A’ word!”

As part of a panel discussion at the University of Miami recently, my attempts to point out the absurd events which followed this research paper were merely dismissed by the professors, who pointed out: 1) “…that the paper incorrectly described a sequential series of patients” and 2) “… it was followed by studies which have countered Dr. Wakefield’s later findings.” In case anyone cares, the answer to #1 is that it was called a “consecutive series” of patients who happened to visit the medical clinic, not to be confused with mathematical, scientific nomenclature that denotes a stronger causative association. And, anyway, who cares about that? A doc doesn’t get kicked out of the country for that lapse in language. Secondly, the numerous papers that have not found molecular ‘pieces’ of measles virus in ASD patients provide helpful information. I’m glad that it’s been studied. Is this the Middle Ages? Being wrong does not warrant expulsion, right?

In spite of the British reversal, there will probably be little change in the general public’s present view about Dr. Wakefield. At the time of this posting, a Google Search reveals the most up-to-date outcome of the issue as tenth on the list for “Andrew Wakefield.” The first nine results make him look like either a kook or a criminal. I’ve watched Andrew Wakefield give several medical presentations and he seems sincere, smart, and determined to help ASD patients.

I guess that the reason why I continue to rail about this issue is the time that is being wasted debating the topic. Discussion is one thing; people talk about the facts of a subject and, hopefully, one or both sides develops a more learned theory. This polarization of opinions obscures work on the really necessary steps; to find a cause(s), therapies, cures, and possibly preventions.

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Posted in >ALL<, Alternative and Complementary Medicine for ASD, Chelation, Diets, News-Maybe-Worthy, Vaccines | No Comments »

The World Wide Autism Web

Tuesday, February 28th, 2012

At the time of this post, there were over 80 million Google pages which answered to a Search request for “Autism”. There were 9 million pages for “Autism Cure”. We can’t cure autism yet; we can treat it, however, quite successfully. Such a point-of-view confers this site a lower listing on that search topic. However, there were 18 million pages for “Autism Doctor” and TheAutismDoctor.com appeared as the first result. I am very proud of that, because it means that people are reading and starting to trust my opinion about this childhood epidemic. My Google rating comes from my readership, not Search Engine Optimization Services.

Somehow, conventional medicine and pediatricians have dropped the ball on this important condition. Where else is a parent going to find information about their child’s condition, especially when professionals appear so clueless?” I just read about … fill in the topic… on the Internet and I wanted to know what you think,” is one of the most commonly asked questions in my practice at The Child Development Center of America. This article will cover what I consider to be the good, the bad and the ugly when it comes to the ‘net and ASD:

The Good:

I get to treat patients from all over the world. Are you kidding me? This is the greatest honor that any doc could ever have. So, that’s a plus.

Getting important information out to the public so efficiently couldn’t be accomplished before the Internet. There’d be no ‘TheAutismDoctor.com’!

The web contains a great deal of important and correct information about ASD. Especially when confronted by pediatricians who continue to exclaim, “He’s a boy (premie, like-his-Dad, only-child, spoiled-by-grandma, etc.)… they talk late,” the www helps parents who remain concerned about their child’s development. The diagnosis of autism is often reached by searching for answers about why your child lacks eye contact, or has lost words, or “doesn’t play like the other kids.”

Also, this is my way of venting my frustration about ASD (have I said ‘epidemic’ too many times?); a modern medical condition which has profound effects upon families, patients, and our educational and healthcare resources – present and future. This method of communication adds to the body of clinical experience by reporting how children change and develop with various interventions. Evaluating those 80 million of pages can best be done by a real doctor, however.

The Bad:

Misinformation is rampant. There are treatment protocols that could harm your child, have not been adequately evaluated, or lack reliable data. There are therapies that could deplete your resources at the expense of treatments that have been proven to help your affected child.

All information appears equal at this i-level. Just ’cause a person learns about architecture doesn’t make them an architect. I have previously admitted that the traditional pediatric community seems to share a large part of the blame by not listening to parents and exhibiting a lack of intellectual curiosity that this problem demands. Once a parent finds a trusted physician, protocols are best handled at that level of expertise. “Can’t you do treatments every 3 weeks instead of every 2?” seems a silly question for a cancer specialist, right? ASD is a mystery that has only a few really successful interventions. If a patient is going through several therapeutic interventions at the same time, it is really rolling the dice as far as what outcomes you should expect.

All parents want more. Just like for neuro-typical kids, you want more communication, academic achievement, maturity, friends, etc. Amid a myriad of valid, but conflicting information that awaits more thorough research, there are many websites promising miraculous and instantaneous symptom reversal with nearly-scientific explanations and elaborate video testimonials from actual parents. Furthermore, the more that the treatment seems to cost, from thousands-to-tens of thousands per treatment – the more it entices serious consideration by some couples. OK, doctors have been wrong about some stuff. But we’re not all ignorant about childhood development and physiology.

The Ugly

I got hacked recently! Even my little blog that is just trying to disseminate the truth. The user doesn’t need to provide an email address or fill in a survey, and no money is exchanged. There are no advertisements. Who would want to disturb this outlet? Anyway, I purchased a virus checker and an infection cleaner and changed all of my passwords to encrypted terms that I’ll never remember… so that I will have to keep hitting “forgot password” and wait for that email that tells me that it’s OK to access my own information. Which, apparently, someone in Russia is able to do! But, I’ve digressed…

On the ‘www’, therapies that are unwarranted because of risk, cost, or efficacy appear equal to more sustainable treatment protocols. If I may offer a bit of old-pediatrician advice: that risk thing… you gotta take it into account, and not just say, “I’ll do anything for my child!” The ability for the dishonest to seek out desperate families is greatly aided by web capabilities. People who are maybe even well meaning, or have helped another child with some other treatment protocol. Plus, perhaps it worked or perhaps it didn’t because you didn’t see / examine that child when a diagnosis was made. So, that’s basically the lowest level of information (scientifically) that you want to evaluate. It’s not invalid, it’s just not YOUR kid.

The scrutiny with which a parent considers the information that is presented by multiple sources of information, including their (regular) pediatrician, their (conventional) specialist, therapists, the child’s grandparents, teachers, books, publications, conferences, research and the web need to be included in order to arrive at the most helpful experience for your child.

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A Tale of Two Autisms

Monday, February 20th, 2012

It was the best of conferences, it was the worst of conferences. There were families living the reality and experts carrying the truth. These were my experiences at two very different autism conferences this past week. There were sharp contrasts in spirit, knowledge about this topic, curiosity, healthy skepticism, and life experience.

Let’s start with the first presentation, which was a panel of University of Miami autism doctors attended by 40 or so professional school students. I’ll called this ‘Autism I – The Scientific Autism Panel’:

  1. Originally just myself and the Chief of Pediatrics, the panel increased to include two additional well-known, well-published experts. Why add a psychiatrist and a genetics doctor… to defend the flawed/non-existent causation theory?
  2. ‘Conventional’ medical beliefs were in full regalia. When questioned by one of the wonderful, bright students as to whether it was “OK to fire patients from our practice?” the professor answered that the “American Academy of Pediatrics felt that it was best to continue to work on the patients and convince them of the decision to move forward with vaccination,” though personally, he thought that it was unethical. UNETHICAL?? Yo, bro, I have been a member of many-a-hospital-medical-ethics-comittees, and I would love to debate about that. I think that it was Mister Spock who once said, “Sometimes the good of the few outweighs the good of the many… or the one.” (or something like that). I feel that my loyalty is to the family sitting in front of me, and not the “herd” (as the general population is frequently referred to). That is especially true since I do not believe that all the studies show that all the vaccines are good all of the time. Too many variables there, doc, to be pontificating about the good of the many.
  3. A major reason for my presence there was to request young healthcare professionals (and their teachers) to inquire about the clinical condition of their patients before administering vaccinations. I was assured by the Chief that his colleagues and students certainly conformed to that practice routine. I am certain that most doctors never even GAVE a vaccination, let alone asked whether the child was recently ill, or did poorly with a previous vaccination, or whether there were other kids at preschool who were sick, etc.?
  4. Pretty much, the experts that I encountered that day were of the opinion that the course of autism was pre-determined. If  you got it, that was just a bad coincidence, and if you got better from it, that was a fortunate coincidence and if the child was really affected, there was little that could be done medically, other than treat the symptoms. Except, of course, traditional S&L, OT, PT and ABA. I felt that the other panel members were totally dismissive of the theories about causation and treatment. They were teaching future professionals.
Then there was Saturday’s presentation to “A Bridge To Healing” group in picturesque Palm Beach. Attendees were professionals and parents from the area who were interested in understanding biomedical intervention. I’ll call this one “Autism 2 – The Real Thing.”
  1. These folks were living the epidemic. There was no 20 minute theoretical discussion about an increased incidence of ASD. The questions that they asked revolved around what they could do to further their child’s development.
  2. When it came to the topic of vaccinations, I found that the audience was receptive to a schedule that was more appreciative of the needs of the few and the many, if it made more sense. I frequently encounter this sentiment; that there would not be so much polarization if the powers-that-be would reconsider a schedule with fewer vaccines, spaced farther apart.
  3. Their interest about the workup and treatment of a child’s condition led me to believe that parents were re-thinking their views about their child’s future and steps that they might take to address symptoms, and in a more natural way.
  4. The professionals in the audience were eager to understand how meshing biomedical and traditional interventions would produce superior results for their patients.

This is a time when parents are not on the same page as their doctors, which can’t be the best situation for affected individuals. From where I stood this past week, it’s the experts who could do “a far, far better thing,” and pay more attention to helping this growing patient population.

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Brian D. Udell MD
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