Archive for January, 2012

Walkabout for Autism 2013

Sunday, January 29th, 2012

This past weekend, the Dan Marino Foundation hosted the second annual Walkabout for Autism at Sun Life Stadium here in South Florida. The Foundation is a wonderful agency, assisting many other charitable organizations that help families and children with ASD. As a Board Member of the Autism Society of America, Broward County Chapter, I have been witness to many of the benefits that this marvelous endeavor has generated. Moreover, that money has been distributed locally in order to actually help fund events that enable children to enjoy movies, outdoor activities and other social events which are so necessary in their lives.

The advertising and enthusiastic support of the many families who have been affected by this modern developmental epidemic has spawned a very successful event. I am writing this post to comment upon an unforeseen outcome that the popularity of the Walkabout has encountered. In short, there were too many people and not enough support for the affected children. That created a great deal of anxiety – on the part of the developmentally challenged and the neuro-typical family members, alike –  and so there were more than a few ultra-meltdowns as the afternoon wore on.

It’s gotten so successful that this year there was a bottleneck as families entered the stadium on a warming SoFlo afternoon. The understandingly important and informative speeches weren’t necessarily so well-understood or appreciated by the very people whom the speakers were trying to help. By the time the participants got to the field, there was a paucity of available liquid refreshment. Exciting, anticipated (to the point of distraction) amusements had long waiting lines, rivaling those at Disney World. And, I write notes for children so they can bypass that roadblock in their lives!

So, there is this line in the movie, Dr. Strangelove, where the President admonishes the physically confrontational representatives from Russia and the United States, “Gentlemen, there’ll be no fighting in the War Room!”

That’s the first thing that came to my mind when my helpful and friendly office manager retold the events of her day. Can you believe it? Disruptive and aggressive behaviors at an autism event? Do tell! After enduring the grown-up pre-game events, waiting to go into a much-anticipated bounce house, Karen’s wonderful and talented son finally lost it when confronted by a service dog – animals, in general, being a particular fear for Jake. Another patient had to make an emergency visit to my medical office because of her increasing combative behaviors. That poor child had even hit a familiar therapist who was, apparently (according to Mom), unaware of the child’s physical potential. There were also many other families who experienced frequent challenges as the afternoon events – which were supposed to be fun – proved too much to handle.

For next year’s participants, expect delays and unforeseen events that need to be assessed and addressed. Parents may come to the conclusion that certain children lack the skill to handle such situations. Practice (social stories, the park, play dates) helps. How your child behaves at Disney, or in malls, for example, can be instructive. For the 2013 organizers, this knowledge can guide expectations about supplies and other extra services. For volunteers, a great deal of patience will be essential. Recognizing potential situations can be very helpful; so that letting an ASD child ‘cut’ in line might not be a bad idea. All of the problems that were encountered appear to be relatively easily addressed and so I expect that next year’s event will be even more successful. Just remember that means more… more… everything.

The New Autism

Sunday, January 22nd, 2012

There were lots of media stories this week announcing that, because the criteria for the diagnosis of autism are changing in the new Diagnostic Manual (DSM V), there could be a decrease in the number of documented cases. This finding was based on a study by Dr. Fred Volkmar (a Yale University autism expert), in which he used 1990’s data to analyze the effect of a diagnostic shift, and was reported in the New York TimesOthers have disagreed with his conclusion. I am one of them.

First, as I have been saying for years, don’t ask doctors or ‘experts’ whether the explosion of ASD is real. Ask 40+ year-old teachers, Speech & Language Therapists and Behavioral Therapists who have been witness to the epidemic rise in developmentally challenged youngsters. Especially ABA professionals, who are generally not covered under insurance, have proliferated… because they are the only proven therapy, and so knowledgeable parents seek their services.

The CDC studies that have documented the drastically increasing incidence of autism were not based on DSM criteria, they were based on the type of services that the patients had received. That means that the number of cases of ASD (regardless of diagnostic nomenclature), will not change in the real world. Calling the bubonic plague “an acute Yersinea infection” doesn’t change the incidence of the Black Death.

Furthermore, I believe that the Diagnostic and Statistical Manual of Mental Disorders (DSM – the ‘bible of psychiatry’)  is the incorrect storage bin for this diagnosis in the first place. Autism isn’t a separate mental condition, it is a medical disorder. Big difference. Diabetes is not in the DSM, schizophrenia is. Listing the diagnosis in this manner is not allowing for the paradigm shift that many brilliant researchers are discovering. The types of mental illness that are associated with the autoimmune condition thyroid disease, for example, are listed in that manner, not the other way around. So, in the future (?DSM VI), ASD will be a subcategory, listed under “the presence of mental symptoms that are judged to be the direct physiological consequences of a general medical condition.”

Why is popular media so quick to pronounce that there is no epidemic?
Fear, perhaps? Denial?

The study in question was presented at a conference in Iceland and is expected to be published some time this Spring. The DSM V does not come out until 2013. Must be a slow news day. Dr. Volkmar’s intent in his study was to warn that, based on the new criteria, many children might not qualify for necessary services. While that is of great concern to parents, educators, and therapists, it is probably an overstatement. At the Autism Society of America conference last year, the going concern was that the incidence of ASD could appear to increase under the new criteria. That is because diagnoses such as PDD-NOS and Asperger’s Syndrome would be rolled into the new category. Hmm… looks like they have another view (added 1/27/12).

So, if the proposed changes are utilized, who will be included and who won’t qualify for services? In my practice, where we help 30 or more children every week, every child that I can think of would still have the necessary criteria to qualify for appropriate interventions. Language in DSM V is slated to include “… neurodevelopmental disorders… feeding and eating disorders…Disruptive, impulse control and Conduct Disorders…Neurocognitive disorders.” Is anyone you know being left out? The next standard that appears to be of concern is the inclusion of ‘severity’. There is a great deal of leeway in the interpretation, especially considering that the hierarchy is defined by “requiring support, requiring substantial support, and requiring very substantial support.” Huh?

All this doesn’t make the DSM as inaccurate as it is irrelevant at this time. This is not a new debate. “Five” will be the first major revision to that manual in 17 years. The committees have been requesting input from outside sources for more than one year, and will be considering the new information when making a final decision.

The bottom line is this… I WISH that this diagnostic change would produce a decrease in cases! But, you know what? My practice will be just as busy the Monday after the change as the Friday before the new DSM V. Parents will seek assistance because there is some epidemic of childhood development that desperately needs to be addressed. Families will be just as confused about what is wrong with their child and doctors will not be able to help any better until we have more information about cause and treatment.

Autism & Moneyball

Thursday, January 19th, 2012

I’ll indulge myself a bit here and compare my medical practice that helps ASD patients to the story in the movie Moneyball. It’s about Billy Beane, the general manager of the Oakland A’s, who changed the way that baseball evaluated, paid for, and used players to win games.

Regarding developmental concerns, my practice represents a sea change… to insist that the modern epidemic that we call autism is medically treatable. This is NOT a fixed, genetic disorder with little hope of recovery other than that which takes place by the use of ABA, S&L, PT and OT. “That’s it. Therapies are what you do. Everything else is bullshit and you’re wasting your money if you try,” parents are told.

“You got what you got, deal with it,” claim the conventional docs.
Yo, bro, it just ain’t true.

And, like the story in Moneyball, the first teams that try to run their game plan in a novel manner are ostracized, criticised, derided and dismissed by the establishment. At first, there were some errors as the new practice attained more experience and fine-tuned the algorhithms. Sometimes, it took firing the old-timers who refused to change. In this case, that would be the neurologist who wants to see your child back in 6 months to tell you the same thing that he told you 6 months ago.

Other obstacles that needed to be cleared in the movie were overpaid players who really didn’t help the team. I’m thinking that represents the allergists and dermatologists. Not all, just the ones that aren’t helping us win. And what about the psychiatrists? I think that they are in a different ballpark altogether (nothing new).

Then, there is cajoling the coach into coming on board with the innovative plan. That’s YOU, the parent, of course. I consider every parent THEIR CHILD’S expert. Parents know what their child can do, how much skill they have locked inside, what they can accomplish if you could just get through. But, as in the movie, coaches need to be convinced before taking such a risk.

That makes me Bille Beane, the General Manager who has decided that the present practices are not working. The new paradigm recognizes that too much money was being spent on the wrong stuff and not enough thought is going into what makes a successful therapy.

In baseball and medicine, positive results are what really count. Since I have been practicing medicine by including complementary and alternative treatments, I have been successfully improving lives and winning over patients and their families.

By the way, although I have compared my work to the Moneyball metaphor, I am in no way comparing myself to Brad Pitt! More like Jonah Hill (pictured above).

Apples, Arsenic & Autism

Sunday, January 15th, 2012

Just this past Fall, Dr. Oz featured an episode about several brands of apple juice that contained up to 3-1/2 times the amount of arsenic that is considered safe in our drinking water. The Department of Health and Human Services sent investigators from the Food and Drug Administration and responded that the Nestle/Gerber food product that they examined was in the acceptable range.

The FDA chastised the show for “irresponsible and misleading statements.” In another correspondence, the FDA pointed out the difference between the organic and inorganic arsenic forms, only the latter being of concern since it is a known cancer-causing agent.

Consumer Reports joined in the fray, and recently reported high levels of the bad kind of arsenic in 10% of samples, higher-than-acceptable levels of lead in 25% of the products, grape juice containing similar poisons, plus other disturbing findings about toxic exposure. My medical practice has fielded more than a few questions about this controversy. The arsenic comes mostly from the soil, even from ‘organic’ orchards, and even if the poison is no longer used as the local pesticide. For example, one of our patients who had his urine tested after this report did, indeed, have elevated levels of arsenic. However, fortunately, his blood level of this and other toxins was negligible, meaning that his body was detoxifying correctly.

In addition to the inorganic form of arsenic as being a known carcinogen, it also increases the risk of cardiovascular disease and diabetes. In the practice of developmental medicine, I am concerned about arsenic being related to immunodeficiency because so many of our children with ASD have autoimmune symptoms. Plus, we should be concerned about studies showing the effects of arsenic on intellectual function and psychologic changes in children exposed to the poison.

There does not seem to be any totally safe method for removing arsenic from the body, though proposals for treatment have been offered and DMSA (a chelating agent) has been used when toxic levels are present in the blood. Foods which are rich in sulfur are said to be helpful (I give my patients glutathione – a sulfur containing supplement), as are fiber-rich foods. WebMD offers advice on ways to limit intake here.

All of the above notwithstanding, I am writing this post to offer a different point of view about this issue.

Whenever our government agencies are questioned about safety, why is the usual immediate response “It’s not what you think, everything is OK, don’t worry, we’ve got it covered,” and “You don’t know what you are talking about?”

I am aware that most agency bureaucracies are staffed with underpaid, overworked, and probably well-meaning individuals. So, why not answer Dr. Oz’s report with, “Really? Geez, we need to look into that problem and make sure that the population is safe.” I can’t believe that people wouldn’t be OK with that response. I can’t believe that the first responders would get fired over saying that “they don’t know” if something is true or not, or if they proclaim that a problem “deserves further investigation.”

Confidence in our governmental oversight agencies would only be bolstered if the staff and administrators would demonstrate a healthy skepticism about what is considered “safe”. We are not children who need to hear platitudes and unsubstantiated explanations, let alone reprimands and threats, as the FDA responded in the present case. There are bad medicines, unsafe products, high-risk emissions, and toxins that abound in the air, food and water.

And, that is just from the home-grown stuff! What about the poorly regulated products that arrive from other countries (demonstrating even higher levels of toxins)? The powers-that-be should be setting an example by confirming that they don’t have all of the answers, and that more knowledge is needed.

Finally, we would all do well to monitor the part that we play amplifying this toxic world and our own consumption in such a manufactured environment.

Top Ten Autism Plans for 2012

Sunday, January 8th, 2012

The New Year has inspired me to think about practice goals for  the coming year; personally, professionally and more:

10. CAM practitioners will gain more respect by the conventional (and failing) medical community.

9. More institutional research which has been targeted at treating developmental delay will document the improvements that affected individuals have made.

8. More CAM practitioners will be asked – and make ourselves available – to advise the next round of politicians about better, cost-saving healthcare solutions.

7. This year will mark my first formal research project – assessing the Neurosensorimotor Reflex IntegrationSM (MNRI) Method.

6. I plan to present my first paper – about oral glutathione – to the International Society for Autism Research.

5. is establishing a Web Site for patients to find and get help from CAM practioners, and for professionals to post important information.

4.  I will really get started on  finish that book that my beautiful and patient wife keeps reminding me that I’d said I’d write.

3. TheAutismDoctor will continue to develop into a valuable site for patients and practitioners.

2., our practice website, is being improved in order to make it easier for parents to document the course of their child’s condition and to communicate with the doctor.

1. I will strive to make this medical practice the best that it can be.

These are not all exactly New Year’s Resolutions, so some are more likely than others to actually take shape. The main thing is to help the children and families affected by this subterranean erosion in our society.

Asperger’s and Autism

Monday, January 2nd, 2012

Hans Asperger

It should go without saying that making an accurate and specific diagnosis is key to helping each patient, even if there is no current successful therapy. That is because, as medicine describes other patients with a similar set of signs and symptoms, there will be word of treatments and other important and pertinent research.

This could lead to improvement, cure or prevention, maybe not in a particular patient at this time, but perhaps in a few years or for the next generation. This is what I often say to parents who exclaim, “I don’t care what the diagnosis is, just help my child!”

One of the most enigmatic conditions that I treat is Asperger’s Syndrome. Wikipedia gives an thorough summary of the condition. This blog will cover my experience with the disorder. First, I object to the term as being equal to “high-functioning autism.” Not only do I believe that Temple Grandin is a ‘high functioning autistic’, she’s a higher functioning person than I am! I never wrote a book, or designed a cattle ranch, and no movie has been made about me… you get the point.

If ‘high-functioning autism’ is a term that parents and patients want to agree upon, so be it. Many such individuals do not wish to even seek medical intervention, anyway. Secondly, in a similar manner, I object to the morphing of a diagnosis into Asperger’s. That is, if you are a ‘high functioning’ autistic person with difficulties in a social atmosphere and odd behaviors, then you must have outgrown your previous diagnosis of autism and magically became an ‘aspie’.

Finally, I object to the adjective because I have treated patients with Asperger’s diagnosis who weren’t so ‘high functioning’. I believe that this point of view is important because it involves making the correct diagnosis.

Simply because some medical condition appears to look like another medical entity does not mean that the conditions are alike. Coughing blood and weight loss can be from an infection, toxins, or cancer, among other diseases. The cause is all important when you have an infection; that is, which organism you are treating will determine which antibiotic you choose.

The assumption that Asperger’s Syndrome is a form of autism, differing only in degree or severity, may not be correct. We don’t even know what autism is, or what causes it, or how to prevent it, or whether the regressive is the same disorder as the congenital form, so why should we assume that Asperger’s is just a form of it? These assumptions may actually further our ignorance by impeding the search for more specific knowledge.

And, I don’t have a problem with the proposed DSM V inclusion under the ‘Spectrum’ umbrella. Heck, utilizing psychiatric diagnostic criteria for autism is wrong in the first place. Also, if it gets services for affected individuals, that is ultimately the goal anyway. That is what Dr. Lars Perner (an ‘aspie’) said at a recent meeting regarding the diagnostic changes. Dr. Nestor Lopez-Duran provides a thorough treatment of this topic in his child psychiatry blog.

This brings me to the present lack of state-of-the-art regarding treatments for Asperger’s Syndrome. To the extent that ‘stims’, perseveration or repetitive movements relate to gut disorder, biomedical treatments can be effective for selected individuals. When food allergies or sleep disturbances are treated safely and effectively, such interventions assist with better focus and concentration. If symptoms relate to metabolic slowdown that improves with increased energy by way of nutritional supplements, biomedical initiatives appear to improve a particular Asperger’s patient’s symptoms. Calming agents such as pycnogenol or magnesium could have some effects that improve anxiety in social situations, for example.

The ADHD symptoms that often accompany this developmental disorder can improve with stimulant medications. However, getting on that pharmaceutical merry-go-round is no picnic and requires close observation and frequent changes. OCDs tend to be treated with same tonics that were invented for much older patients with psychiatric disturbances and have limited success. Oppositional behaviors are sometimes amenable to low dose naltrexone therapy.

But the overall improvement that a patient would seek – in both social and communication domains – requires a great deal of thought and planning to treat successfully. Sensory problems have a myriad of therapies (e.g. neurofeedback, Tomatis, Relationship Development Intervention), with varying degrees of improvement. Eye contact and conversational norms do not lend themselves to medical intervention and are fairly resistant to psychological counseling.  This is when social situations, from the Scouts, to horse therapy, to martial arts, to appropriate sports activities (swimming or track rather than cooperative team sports) can make a great deal of difference in the patient’s life. For certain teens, learning magic, for example, is a great way to gain social acceptance. ABA – behavioral intervention can be a powerful tool.

Doctors need to keep an open mind since recognition of this diagnosis is often elusive. The New York Times has been publishing a wonderful series of articles about the autism disorders, and there were recent posts about Asperger’s Syndrome in particular.

The more awareness that this disorder gets, the more likely that there will be research into etiology, diagnosis, and effective treatments. There are many ‘aspies’ out in the world living productive lives, we just need to get each child on the correct path.

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Brian D. Udell MD
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