Archive for the ‘Asperger’s Syndrome’ Category

Best Summertime Activities for Children with Autism and ADHD

Saturday, May 23rd, 2015

It’s already the end of this school year. Many families (here, in Florida) have been through an IEP to determine services for the next semester. What is best? Often, it will involve some special education, possibly in an ESE classroom or GenEd with pullouts.

Yikes, it’s so complicated! Children are in a constant state of change. Summer activities have already been formulated, but there are many questions about what to do with the unstructured time. So, here is TheAutismDoctor’s top ten list of things to do this summer:

 Leave time for the kids to just be kids. Especially for children under the age of 5 years, academics can take a back seat to socialization.

 Children over that age often have difficulty focusing on non-preferred activities, and so will need to practice some of those skills, in order keep up. Pick the areas that are most challenging, and set aside some regular time for practice.

 Parents are frequently at odds about whether to let a child spend time doing digital ‘stimming’, such as watching favorite Youtube videos, or repeating Angry Birds. A useful compromise is to strictly limit those activities to very specific times. No deviations.

 Children should learn to swim. It may take a professional just to get the child into the water, but eventually, they all learn to love this activity. Although a parent is not assured that acquiring this skill can prevent a tragic accident, it may provide some measure of confidence.

 Together with the child, learn or practice a new, easy, outdoor hobby. This promotes better health and socialization. The experience gets the child on a more equal footing with the parent, as they explore activities such as fishing, boating, surfing, golf, biking, or hiking.

 Children who get to visit the family’s home state/country/old neighborhood thrive. The cousins are usually prepared, so the ASD kid has built-in playmates.

 To the best of your abilities, don’t give up on the diet and supplements.
It’ll be that much more difficult when you go back.

 This is a good time to give some of the alternative treatments, such as Low Dose Naltrexone or glutathione, a try. Negative reactions can be quickly identified, and there may be some surprising results.

 Give the stimulant and anti-anxiety meds a break.
Summertime isn’t that intimidating.

 Families who take vacations together have the best outcomes.

Real Autism Awareness 2015

Thursday, April 2nd, 2015

Autism Awareness is not just about slogans, license plates, Autism Walks, or assorted news stories. The term carries a variety of implications, including:

Public Opinion
Awareness will come when we quit arguing about whether there is an autism epidemic or not.

We need to stop wasting time blaming Andrew Wakefield (the doctor from England who had the temerity to question the vaccine gods) for why we don’t have a cure for autism. If you want to blame someone, start with Leo Kanner and Bruno Bettelheim, who concluded that it was the result of faulty parenting.

Political / Legislative
This past August, “President Obama signed into law the Achieving a Better Life Experience (ABLE) Act, which will allow families with children with disabilities to save for college and other expenses in tax-deferred accounts. This piece of legislation is an important step toward empowering people with disabilities to achieve independence and affirms self-sufficiency.”

Insurance companies need to become more realistic about what services are required. The traditional therapies are effective, and should be reimbursed appropriately.

Autism awareness includes dealing with the situation of an aging ‘Spectrum’ population, and the resources that will be required.

Scientific
There will be more enlightenment when we stop focusing on the ‘anti-vaccine kooks’ and start researching an intelligent answer to the question, “Are all vaccinations good for all children all the time?”

We need to be cognizant that ASD continues to increase, and research has not yet uncovered the most basic questions of “Why, Who, or What?” “Where and When” is right here, right now.

Autism awareness includes mindfulness of the environmental impact.

Personal
Speaking of ‘awareness’, how about when a parent can go to the park and sit on a bench while the child plays (or tries to play) with the other kids?

Another example is the child’s awakening. Parents are thrilled when they no longer worry about elopement when the family is outside or in a crowd.

Finally, REAL autism awareness is when your child gives kisses and says, “Mommy, I love you!”

Professional Resources for Steady Progress in Autism

Sunday, March 22nd, 2015

Parents frequently express concern that their child’s progress is too slow. They want to be sure that something is not being missed. As months and years pass, and especially if there is little progress from conventional therapies, their search begins and/or intensifies.

Resources include the Internet, books, lectures, webinars, conventions and conferences, schools, professionals of all varieties, family, friends, and other parents. The weaker the science, the louder the opinions.

Here are a few helpful choices:

Websites:
Googlescholar.com is the website to search for literature on topics that require further understanding and research.

SFARI gene is the site for reliable, accurate information about any genetic variation. Results that were previously considered ‘not significant’ may be just the opposite.

Autism360.org is the place to upload your child’s data, so that individualized therapies can be developed.

PDR.net is the address for reading about pharmaceuticals prescribed by your physician. True, it’s pretty scientific, but it’s the one the doc checks (or should).

WebMD.com and Mayo Clinic both display a lot of medical information, much of it in lay language, based on reliable resources. This can be useful when the pediatric specialist, e.g., strings together an incomprehensible list of terms about your child.

Quackwatch.com is the kook meter. The mission statement describes, “… an international network of people who are concerned about health-related frauds, myths, fads, fallacies, and misconduct.” Is that because those who do not agree with their conclusions are people who are not concerned?

Tacanow.org is the cookbook resource for GF/CF recipes.

CDC.gov is the site for the most complete government data on autism in the US.

Books
Start with Dr. Martha Herbert’s The Autism Revolution. This story describes a sea change in our understanding of ASD.

Temple Grandin’s books explain autism from ‘the horse’s mouth’, so to speak. The Reason I Jump is fine, but Ido in Autismland provides more insight into the autistic mind of children and teens.

Asperger’s families can learn a lot from The Curious Incident of the Dog in the Night-time, which is presently a Broadway play.

Conferences
The International Meeting for Autism Research continues to grow in scope and size. What an ideal venue to meet the present and future experts in this field.

The Medical Academy of Pediatric Special Needs now sponsors the most academic meetings. Although the semiannual event is geared more toward professionals, many parents could benefit from some of the seminars.

Webinars
The original site for ‘DAN’ doctors is now the Autism Research Institute. The educational offerings are significant and quite helpful to families who want to better navigate such a confusing condition.

Autism Speaks performs many of the most basic and wide-ranginging of informational sites, including helpful interactive pages. The spectrum of services ranges from funding to fund raising.

Try this example:
There are reports of great progress from giving worms (Helminths), worm removal, fungal administration, (Saccromyces), fungal removal (fluconazole), and fecal restoration. Trying to achieve gut health is the common feature.

Next, what is the most scientific way to study and treat that condition? Utilizing reliable knowledge bases, a reasonable plan can be formulated. Safety, effectiveness, and predictable performance should be part of that protocol.

Conclusions:
The lack of trained professionals and overwhelming number of new patients eventually leads families to some sort of journey into the unknown.

Checking out the resources that the pros use may be helpful in that undertaking.

Autism Conference Spring 2015

Sunday, March 15th, 2015

The Medical Academy of Pediatric Special Needs provides this semiannual standard-of-care meeting, which is dedicated to teaching physicians and other practitioners who care for patients with ASD.

Various educational courses were offered, covering a variety of interests and experience. This being the 7th conference, an entire day was reserved for difficult clinical cases, discussed among ~30 doctors, who had previously passed the basic science courses.

Mitochondrial functioning played a significant role in this year’s presentations. The myriad of functions involved with these cellular power-plants was explored. This is a complicated topic that includes genetics (mitochondria even have their own chromosomes), over- under- and malfunctioning, environmental effects, cell-to-cell, cell-to-system and cell-to-environment interactions.

Impressions:
Prior to one of the lectures, there was a wonderful moment when Dr. Bob Sears, Dr. Jerry Kartzinel, Dr. James Neubrander, and Dr. Dan Rossignol were among those discussing the recent measles epidemic and what their practice was doing to address the situation. That conversation would have made a well-hit youtube video!

Another time I found myself eating lunch with Dr. Michael Elice, Dr. Stuart Freedenfeld, and other popular autism practitioners. There was a great sense of camaraderie and common purpose. This is one the few social experiences when doctors, such as myself, are not derided for our unpopular opinions.

Any new treatments?
Dr. Sid Baker, a true pioneer in the practice of the biomedical treatment for ASD, presented a wonderful historical perspective. Because of an earlier focus on autism as a genetic disorder, Dr. Baker opined that, “The last ten years have shown very little progress in the way of understanding and treatment of autism.”

One frequently discussed off-topic topic was the lack of research and safety of chlorine dioxide (ClO2), which is touted on the web as a helpful treatment. It is supposed to work by ridding the body of parasites. Ironically, however, one of the more popular new treatments involves helminth therapy (giving parasites to patients) to re-invigorate the immune system.

Conclusion:
It would be preferable if participants could return from such an educational experience with a list of novel therapies for our most challenging patients.

For now, learning key tricks and tips that address negative behaviors, or gut health, for example, are the order of the day. We learned about more precise lab tests, key findings that could point to more specific therapies, and important metabolic pathways that will help our patients, if not today, soon.

We consider what avenues to pursue, and those that need further evaluation. This organization is dedicated to providing well-researched medical solutions.

Because autism is so widespread, misunderstood, variable and mysterious, the ability to network with international experts and ‘pick the brain’ of those in the trenches is the most valuable feature that the conference provides.

“It’s supposed to be hard. If it were easy, everyone would do it”
Tom Hanks in A League of Their Own

The Dress Color Debate and Sensory Processing in Autism

Sunday, March 1st, 2015

Image Credit: J. Jastrow (1899)

It became headline news, this week, when Wired magazine reported “The Science of Why No One Agrees on the Color of This Dress.” The usual reaction by those involved in the autism community has been, “Tell us something we don’t know!”

The terms visual-, auditory-, and sensory- processing ‘disorder’ have all been invented to describe conditions that patients experience. Rather than representing separate maladies, unusual patterns of filtering are part of the fabric of ASD.

Part of the hoopla is the controversy surrounding the ‘correct’ color of the dress. Colorblindness is mostly attributed to the lack of color-producing rods in the retina, not a processing difference in the brain. In this example, ‘normal’ people disagree.

The other factor is that the present conundrum is unlike the old-time Rabbit-Duck optical illusion (pictured). Once you are told what to look for, the type of animal makes sense. In this case, it is almost impossible to understand how the dress could be any other than the colors that we perceive.

The Wired article explains how light enters the eye and is reflected, wiring in the brain, ambient light, etc., and concludes, “… your brain tries to interpolate a kind of color context for the image, and then spits out an answer for the color of the dress.” With all of those parameters, it is difficult to understand how there is ever any agreement.

Little is explained about how we arrive at an individual conclusion. This example highlights the paucity of information explaining why humans see the dress color differently. Such a situation underscores the difficulties understanding already-altered sensory processing in people with ASD.

How many times have parents, therapists and teachers asked, “Didn’t I just tell you that color?” Or, “I can’t understand why he’s such a picky eater.” “She smells everything.” It rarely occurs to us that an affected child senses a common item differently.

The controversy about the tint of the dress and the frustration of those who see it differently is but a tiny example of the sensory processing differences experienced in the face of ASD.

Whatever the underlying reason for variation in the response to the pictures of those dresses, it helps remind the neurotypical population how differently we all see the world.

10 Successful Strategies for Children with ADHD

Saturday, February 21st, 2015

Winter holidays are over. Things are back to normal at home (yeah, right, normal). School is ramping up and children with developmental concerns become even more challenged.

There is a constant stream of parents, these days, seeking relief because they are told that their child has Attention Deficit – Hyperactivity Disorder. They ask, “How do we get through the rest of this year,” and “What should we do about the next semester?”

Every child should have an appropriate workup leading to a clear, accurate diagnosis. ADHD can be a part of autism, thyroid disorder, gastro-intestinal problems, allergies, asthma, vitamin deficiency, etc. By properly diagnosing and managing a primary condition, many of the behavioral concerns may abate.

Make sure that inappropriate conduct is not due to something the child is receiving by way of medications for another condition, e.g., steroids or ‘cough and cold’ preparations.

Before becoming too aggressive with pharmaceuticals, consider the age of the child. A three- or four-year-old has time to mature and achieve self-control, while there are more academic demands on a eight-year-old.

Evaluate the difficult behaviors to better decide which intervention(s) will have the optimal chance for success with the least side effects. Occupational therapy is great if there are major sensory issues, neurofeedback might be helpful for focus, and behavioral intervention (ABA) might be more appropriate for disruption issues. Even if a parent still has to resort to medical intervention, lower doses and less frequent changes may be a result of this strategy.

Consider that inattention and poor focus could be due to mixed, missing and/or crossed signals in the CNS. With such a situation, non-preferred activities are much more difficult and therefore resisted even more than in typical peers. Until improved methods for overcoming learning disabilities are discovered, more patience and practice is required – and less criticism.

adhd bullett4dFor children who take stimulant medications, those who are able to tolerate drug ‘vacations’ will suffer less of the consequences of decreased appetite, sleep and linear growth. Sometimes, it is only for summer vacation, and other children are able to experience drug-free weekends.

Children who do not appear to be listening, are often simply listening without looking. That is not acceptable in a large, general education classroom. Nevertheless, medications that supposedly help focus and distractibility, might not do that, either. Anti-anxiety medications, starting with Intuniv, and sometimes even escalating to Prozac, are often suggested. If possible, the best improvement should come when the reason for gaze difficulty is understood.

Once parents make the decision to give medication a try, expect the most successful outcome when there is a clear understanding about positive and negative effects. It takes time to get the most desired results, and that knowledge can help the family withstand rocky periods. An ability to contact the responsible practitioner leads to increased compliance.

Be careful (and appreciative) when a treatment plan is working. Attempting to fine-tune a lingering shortcoming can lead to disastrous results. External stresses, from an ear infection to visiting relatives can disturb the calm. The child who maintains a healthy diet and necessary supplements is better prepared to weather the storm.

Inconsistency is the most consistent parental frustration. While it is in our nature to admonish the negative behaviors, remember to reward the good, as well.

To Vaccinate or Not to Vaccinate?

Saturday, February 7th, 2015

The measles outbreak that started in Disneyland has generated a fair amount of activity at The Child Development Center lately.

Many of our patients are either un- or under- vaccinated, according to the Vaccine Gods, so an increase in a preventable childhood disease in the U.S. is a very important healthcare issue.

In response to the media stories, and with the intention of addressing parents’ concerns, The Center emailed our patients.

The advice that was offered:
a. If the child has never had a vaccination, it is best to “bite the bullet” and go ahead with an MMR. We’re in the middle of an outbreak and it’s a very small world.

b. If the child has been previously vaccinated for MMR, you could get  “measles-mumps-rubella titers”. This is a blood test to determine if the child is still immune to the diseases, so it may be OK to hold off for now.

There were a variety of interesting responses.
Parent: “Thanks, Dr. Udell, for the heads up.”
Dr. U: You’re welcome. I’m just a messenger. Parents are the ones who have to make the final decision.

Parent: “What if the child has antibodies to eggs (allergy)?”
Dr. U: That is a big problem. I would look over the most recent laboratory tests and, depending on the child’s present state of health, and other findings, possibly still have to recommend. For what it’s worth, two of the products are actually grown on chick embryo, and almost all of our yolk-and/or-white-positive patients are negative to chicken. The German measles strain is grown on lung tissue derived from human fetus. We don’t test for that.

Parent: “Can’t you break up the shots?
Dr. U: No, the company that used to produce separates stopped years ago.

Parent: “My child was severely damaged by that shot. I’m surprised that you made this recommendation.”
Dr. U: It’s situational ethics, in a medical setting. I sympathize with your plight. Not only is there conflicting research; cases, such as yours, are completely ignored. Nevertheless, measles carries a 1/1000 chance of encephalitis (brain infection). 

Discussion:
After listening to so many complaints of proximate injury to an inoculation, it seemed that the best advice was to hold off vaccinating until the child improved, and/or the cause(s) of inflammation was discovered. There was little evidence of a rise in disease, so I felt less concern for the ‘herd’ than the family sitting in my office. The plan was to vaccinate a healthier child in 1-2 years, utilizing a judicious make-up protocol, if the parents agreed.

Each family will address this news differently, and act on their decision based upon what they consider as their child’s best interest. Questions and concerns persist. An epidemiologist just published a York Times editorial suggesting that there would be increased compliance if it were more difficult to obtain an exemption.

The line between the ‘good of the many’ and the ‘good of the one’ has shifted. Once the seal is broken, so to speak, and fewer than ~90% of the susceptible population is protected, there can be no accurate prediction of whether/where/when/how severe another outbreak will occur. The choice returns to the ‘good of the one’, so prevention is paramount.

The reality is that, if the AMA, AAP, FDA and CDC would express less dogma, become more sympathetic to those who claim injury, make fewer errors, and perform prospective studies to demonstrate efficacy and universal safety, parents wouldn’t be forced to make such a crucial decision on their own.

Ten Noteworthy Observations about People with Asperger’s

Monday, February 2nd, 2015

reitman1Recently, I had the honor and pleasure of being interviewed by Dr. Hackie Reitman, an orthopedic surgeon, ex-prize fighter, and now author and producer. My role was to provide additional clinical information about his newest endeavor to address the difficult challenges met by people with Asperger’s syndrome.

The eclectic doctor has written and produced a soon-to-be-released movie entitled The Square Root of 2. Plus, he is in the process of publishing his enlightening book, “Aspertools: The Practical Guide to Understanding and Embracing Asperger’s, Autism Spectrum Disorders, and Neurodiversity,” to assist patients, families, and the public in understanding what it is like to live with Asperger’s, and helpful strategies for success.

Notwithstanding the official demise of the oft-used moniker describing a like-group of individuals, this compilation covers some frequent questions and observations:

10. As with autism, which is due to a variety of causes with varying presentations, there isn’t one kind of Asperger’s syndrome.

9. The appearance of any lack of cognition or empathy often does not reflect the affected individual’s reality. They experience emotions, like the rest of us, but do not necessarily exhibit them in a typical manner. Sometimes their frustration can boil over into extreme anger.

8. People ‘on the Spectrum’, who are able to communicate and aren’t aggressive, are considered ‘high functioning’. When Dr. Asperger described the first cases, however, earlier cognition and language differentiated his patients from ‘regular’ ASD.

7. Everyone who doesn’t get a joke doesn’t have Asperger’s, and many Asperger’s patients have a sense of humor.

6. Eye contact can be fairly difficult in Asperger’s. Patients often complain, “Do you want me to talk-listen to you, or look at you?”

5. Sensory issues are a major problem, and difficult for the neuro-typical individual to appreciate. Fluorescent bulbs are a distraction, certain sounds can be like chalk-on-a-blackboard, perfume may be nauseating, taste can be very picky, and just the thought of touch may become frightening.

4. Individuals can learn from a trusted friend, family member, or teacher.  However, many educational environments produce a distracting cacophony of sensory issues. Knowing that a highly social situation will be very anxiety producing makes the sufferer easily distractible and leads to poor focus. It’s not necessarily ADHD.

3. A narrow range of interests and repetitive behaviors are not always obsessive-compulsive behaviors, they are part of the condition. That is why the usual psycho-schizo-antianxiety medications are often ineffective in Asperger’s patients.

2. This is not a diagnosis ‘du jour’. People who experience this condition know it, and are usually relieved when they find out the reason(s) for their differences.

1. As with other ‘Spectrum’ patients, there are often additional somatic issues involving the gut, allergies, and nutritional deficiencies. A thorough medical workup with appropriate medical intervention is frequently quite helpful in relieving some core signs and symptoms.

Dr. Reitman, who is the father of an Aspie, is helping to design a better understanding and treatment of this mysterious condition. It’s comforting to know that, like Dan Marino, Ernie Els, and Jim Kelly, the autism community has another true champion on our side.

Holiday Cheers

Wednesday, December 24th, 2014

Sean, Heather & Dad (Dr. U) in Park City, Utah 12.24.14

As the year is winding down, and many are celebrating this holiday season, I just wanted to offer my words of thanks to all of the families who have trusted us with your beautiful children.

For those who have experienced the loss of a loved one, this is a particularly bittersweet time. My belief is that they become part of a universe that is making this world into a better place, although sometimes it doesn’t quite seem that way.

For the families who have children with special needs, this is an especially emotional time. Is the child excited and expecting a present? Or, are you frustrated that others are displaying so much more joy?

My feeling is that patients with ASD are aware, but sometimes have such a narrow range of expressive communication, that they cannot show you how much they care.

If the Special Needs child needs to be off on their own to play with the new coloring book, build a Christmas lego, watch another video, or even play with the box – let them do their thing.

The well-meaning advice of relatives who think that they know better just needs to be put aside, because they cannot truly comprehend the situation.

Sensory issues, such as smell, touch, hearing and visual ‘stimming’, are part of that child’s experience. This is not the time to pay too much attention to diminishing those expressive behaviors.

Have a great holiday season, and enjoy all of your children for who they are. My goals remain the same – to get to the bottom of this epidemic and assist every parent in helping their child reach their highest potential.

Sincerely,
Brian D. Udell, MD

When Professionals Disagree about Autism

Monday, December 22nd, 2014

Parents strive to do their best for all their children, and this is especially challenging for those with special needs. So, families seek assistance from assorted channels; including books, other parents, therapists, teachers, professional practitioners, and of course, the Internet.

Inevitably, discussions arise about the ‘best way’ to handle specific situations, including the core domain difficulties of social isolation, repetitive motions (‘stims’) and communication.

Due to the enigmatic combination of signs and symptoms that presently fall under an Autism Spectrum diagnosis, there are usually more opinions than the number of authorities involved.

Conflicting information emanates from various sources:
Often, child neurologists are negative about practitioners who offer alternative medical interventions. There has been little change in the advice that they have offered for the past 25 years. Their information is based upon children who were previously put into mental institutions with other ‘retarded’ individuals.
What is the parent of a 5-year-old with apraxia to do? “Get more therapy!” Really? That’s all you’ve got, doc?

Likewise, pediatricians are generally clueless regarding ASD. Whenever a professional concludes, “We should wait for 6 months or so, to give a diagnosis,” parents should seek more substantial advice. What other medical condition is assigned this situation? Certainly not ear, throat or sinus problems, which appear to require immediate antibiotic intervention, regardless of a fever or other confirmatory signs.

Specialists, such as gastroenterologists, allergists, immunologists, pulmonologists and dermatologists seem to have tunnel vision, when it comes to autism. ‘Constipation’ and ‘eczema’ are descriptive terms, not astute diagnoses. Steroids are short-lived band-aids. Miralax® and Prilosec® are downright dangerous.

Psychiatrists, developmental pediatricians, and psychologists are considered experts in assigning an accurate diagnosis. However, RisperdalAbilify, and Adderall never made any child speak. Plus, there are a multitude of negative side effects.

Speech and Language Therapists are the authorities who have been on the front line of the autism epidemic. Children who do not speak are apraxic – period! Advice, such as, “He doesn’t want to speak,” is meaningless. “Mommy, I want juice,” is easier than dragging a parent to the refrigerator. The child would say it, if the circuits worked correctly.

Occupational and physical therapists should be a mainstay, until fine motor skills become age-appropriate. If there were a supplement or medication for such abilities, we would all take a pill and get piano lessons. In the meantime, it takes practice, practice, practice. Children who avoid handwriting lessons are not ‘easily distracted'; they simply don’t wish to ‘suck’ in another activity that other kids tolerate or even enjoy.

Behavioral therapists who claim that a young child is too disruptive and requires medication should seek other employment. Similarly, assigning blame to the family for inconsistent or incorrect responses is not helpful. The more challenging the behavior, the more that a professional should seek the cause and treatments.

The Internet is a collection of stories, with little supporting information. Parents should seek sites that use hyperlinks to actual studies and avoid those with quick fixes or magic remedies. If it worked, we would know about it.

Other families are helpful, for sure. However, their experience is limited to the number of children, their ages, and their condition. No matter how well-meaning, the information needs to be taken with a great deal of salt.

The solution to all of these various expert opinions, is aided by an experienced medical practitioner who has cared for many patients and listens. By taking into account the history, physical, laboratory findings, and previous treatment regimes, a framework for real progress can be constructed.

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Brian D. Udell MD
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Davie
FL 33314
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