Posts Tagged ‘autism puzzle’

Autism Un-Awareness

Saturday, April 12th, 2014

March 27-March 29, 2014. The meeting of Special Needs Pediatricians in California.

Friday, March 28, 2014. The CDC announcement that “about 1 in 68 children has been identified with autism spectrum disorder (ASD)…”

Wednesday, April 2, 2014. Autism Awareness Day (and Month).

Pretty much, such news should have set off a call to action, don’t you think? Yet, there seems to be very little traction. We’re already into the 3rd week of the month, and it doesn’t seem that publicized questions go beyond, “So, do you really think that there is more autism, or have we just changed the criteria?” And, as always, the vaccination issue… Or, nothing.

With deference to those with autism who are pleased with their life and lifestyle, what other childhood epidemic has gotten so little attention? In my youth, polio created summertime panic for our mothers and we were often kept indoors (and that was pre-ac, where I lived). In 1952, at its highest incidence, combined cases (paralytic and non-paralyzing) occurred in ~58,000 out of a population of 158 million people, with approximately 37 million susceptible youth. That was a risk of 1 per 2000 children.

Some may argue that, “Polio carried the risks of death or paralysis, this is just autism.”
“Just autism,” is not a term that I have heard any parent express.
Ergo, we need to erase Autism Un-Awareness.

Knowledge and experience will get us beyond this rhetoric. The first part is expanding daily. The associations between autism and inflammation, G-I heath, environmental toxins and genetic susceptibility continue to be re-confirmed in the conventional scientific literature.

Parents now request much more information about pre-pregnancy and maternal health. Families bring younger and younger children for evaluation. Developmental delays that were previously considered as ‘minor,’ or ‘normal’ may get evaluated and addressed. Sadly, the pediatric community continues to follow a more traditional course in the diagnosis and treatment of this epidemic. Children, nowadays, don’t appear to simply ‘outgrow’ slow language development in the presence of some repetitive or unusual movements. Medical evaluation and intervention does not appear to be consistent with their version.

With so few practitioners willing to learn about and tackle this condition in an aggressive and non-traditional manner, experience is evolving at a slower-than-expected pace. Technological tools, such as relational databases, can play a significant role as conventional medicine catches up with the explosion of cases in such a disparate group of patients and practitioners. is a great example. (Thank you, Dr. Baker)

I’m not quite certain what percentage increase it will take to sway the general population that we have a real problem on our hands. Maybe it won’t be a percentage at all. President Roosevelt’s story warned a previous generation about polio. In 1963, the plight of President Kennedy’s premie spurred the development of NICUs with trained specialists to solve the problems of prematurity, while preserving healthy development. It took Magic Johnson to get the public riled up about HIV and the risk to the entire community. Angelina Jolie exposed the BRCA gene, etc.

Real autism awareness will come when we stop asking the old questions and start considering the condition(s), as it (they) is (are). What we call ASD is a new disorder in a new century. Autism was around and has been creeping up on us.
Speaking of polio, epidemics were virtually unknown in the US until the 20th century.

New shit happens.

Vitamin D for Autism and ADHD

Sunday, April 6th, 2014

One of the more common out-of-range laboratory findings in the children who come to our clinic is a low vitamin D level. Learning about the myriad effects of this important nutrient ought to encourage parents to ask their pediatric specialist to check the blood concentration when evaluating patients with ASD or ADHD.


  1. Vitamin D enhances the intestinal absorption of:
    1. Calcium
    2. Iron
    3. Magnesium
    4. Phosphate
    5. Zinc
  2. It is involved with the immune system:
    1. Normal functioning
    2. Inflammatory response
  3. There are effects on neuromuscular functioning.
  4. Bone mineralization is influenced.
  5. The vitamin is involved with modulating genes that regulate cell growth, proliferation, differentiation and death.

The sequential manner in which this hormone-like vitamin gets into the body, and becomes active, helps explain possible reasons for insufficiency, and observed effects.


Dietary Sources:
According to an interview on WebMD, “Surprisingly few foods contain vitamin D…” Dr. DeNoon lists “Super foods,” such as (wild caught) salmon, mackerel, shellfish and mushrooms. Mostly, though, humans were built to get our vitamin D through the skin, so foods are now fortified to make up the difference.
Based on bone health, and given acceptable calcium levels, dosages of 600 IU/d for non-seniors “meet the requirements of at least 97.5% of the population…” BTW, the RDA for vitamin D was derived based on conditions of minimal sun exposure.
There is apparently conflict among the experts, however, about the definition of standard levels. Recommended intakes for infants and children vary from 400IU to 1000IU per day, with unanswered questions about increases.

You can take too much:
This is a fat soluble product, meaning that it can accumulate and become toxic. That is why a doctor should evaluate and follow levels, especially in high-risk children.

The laboratory evaluation is usually done by testing for blood levels of 25-hydroxy Vitamin D, which is NOT the active form. A calcitriol (1,25 di-hydroxy Vitamin D) level must be ordered separately. The results, and variation from the standards vary, depending on the laboratory. Calcium, zinc, iron and magnesium may be checked, as well.

Autism and ADHD
ASD patients do not represent a ‘normal’ population. RDAs are, in my opinion, the amount below which some neuro-typical people can get symptoms. It seems to me, “Low normal,” is “low.”
There are numerous reports of children spending less and less time outdoors in physical activity,
especially those ‘on the Spectrum’.
Many kids are picky eaters or have been placed on restricted diets
that might affect absorption and levels.

The dermatologists have warned about the dangers of ultraviolet exposure, so SPF 188 was invented and applied copiously.
Often, children have eczema and other skin conditions that
might interfere with normal metabolism.

The conversion of chemicals to the active form assumes a healthy circulation, liver and kidneys. Many of the patients do not appear in optimal health.
There are genetic disorders of calcium metabolism
that present with autism.
There is even evidence that maternal levels may play a role in ASD.

Mostly, however, I am not sure why
so many patients exhibit decreased vitamin D levels.

Children with values that are at, or below the low range of ‘normal’ (depending on the lab), are usually given”D3,” 1,000 – 2,000 IU extra per day.

Treated patients are re-evaluated by periodic testing, plus documentation of daily supplemental intake.
Positive effects, such as a healthier immune system, are usually noticed within a month or two of getting the correct dose. Sometimes, sleep improves (try giving at night). The other therapies appear to work more efficiently; there appears to be better cognition, focus, and eye contact as vitamin D levels are normalized.

It is difficult to sift through, and pinpoint, the specific biomedical intervention that leads to healthier and happier children. “Documentation,” as they say, “is lacking.” It certainly feels as if adding vitamin D3, when it is low or deficient, helps practitioners achieve improvements in signs and symptoms of ASD.

Oral supplementation is inexpensive, usually well-tolerated by the child, can be followed by documenting the course of treatment and laboratory confirmation.

Earliest Autism Red Flags Requiring Intervention

Sunday, March 9th, 2014

There are a variety of reports about the early warning signs and symptoms of autism. It’s complicated, and ‘researching’ the literature does not confer a degree in childhood development. So, parents are left to question whether pediatricians are correct when they announce, “Well, let’s wait six months and see what develops. It’s probably nothing, and your child will be OK.”

Rather than merely list the ‘Top Ten Warning Signs,’ I have assembled a matrix to assist families. This is based on the clinical presentations of more than 1,000 patients, since being part of the autism clinic at the  Child’s Diagnostic & Treatment Center, in 2007.

Requires intervention:   Requires further evaluation:
Poor suck, frequent formula changes. Later, not chewing.
Loss of eye contact, socialization, language
Gastro-esophageal reflux
Unusual, late, or no crawling
Family history of auto-immune conditions, plus S&L delays. Previously affected sibling.
The lack of joint attention, including pointing
Frequent antibiotic usage
Repetitive or unusual movements, incl. clenching, facial ‘tics’, or purposeless gestures of the arms and hands
Immune symptoms such as asthma, eczema, frequent infections
Restricted interests – only playing with one object, especially if it isn’t a toy
Motor delays, especially low core tone, including late sitting or walking
Not consistently turning to voices after 6 months
No babbling by 6 months, or no words by 14 months
Rarely smiling after 3 months
Persistent diarrhea or constipation

Males with undescended testicles or other urinary malformation

In the left column are behaviors that, by themselves, should encourage pediatricians to explore the possibility of ASD, and suggest useful interventions. It is simply not sufficient for doctors to placate parents about such atypical maturation.

In the right column are conditions that, when combined with other findings, should alarm parents and professionals alike to the fact that the child could be succumbing to the childhood epidemic of the 21st century. Underlying signs and symptoms, such as GERD, need to be explored – not merely ‘treated’ with B12-depleting PPIs – and dealt with to their successful resolution. Behaviors, such as infants not turning to their name, should be documented with audiology testing. Effective, proven interventions, such as OT and S&L therapy, should be initiated at the earliest time.

Importantly, any combination of symptoms in the first column plus others in the second, mandates evaluation and appropriate intervention at the soonest opportunity. Early recognition and therapy is paramount. For children presenting prior to age 5, The Child Development Center has been successful, over 90% of the time, in improving the conditions that are described as ASD, in selected patients. Children who respond to treatment can enter a neuro-typical 1st-to-3rd grade classroom.

The CDC reports an incidence of 1/88 children and 1/54 boys. This is 2014, these are not merely ‘soft signs’, and this list is meant to get the parent’s and pediatrician’s attention.

Autism Goals

Sunday, March 2nd, 2014

An important barometer in the current treatment of ASD is the creation of an IEP and the achievement of stated goals. While it is necessary to document progress, the present mechanism may not always engender enough of the kinds of skills that are needed in the real world.

As children improve from the conditions that surround ASD, IEPs notwithstanding, these age-appropriate activities of daily living must be achieved:

  1. The ability to get ready in the morning.
  2. Getting out of the house, into the car, out of the car and into the school, without a major meltdown.
  3. Following the directions of school personnel.
  4. Being able to sit, fairly still, for varying periods of time. Or, at least stand there. Or, at least not be disruptive.
  5. Learn a new activity, or practice a necessary skill.
  6. Transition to another exercise, which may be more difficult (or impossible), or less-preferred.
  7. Kids learn how to be kids from each other. So, children need to show and share.
  8. As development proceeds, children display a desire to watch others play, engage in play, and even initiate.
  9. Getting out of the school, into the car, out of the car and into the house, without a major meltdown.

Academic achievement is the standard for neurotypical patients. For the autistic child, socialization will bring the maturity that can create significant progress.

Does my child meet the following criteria?

Does the child turn to voices and especially their name? “Your son won’t listen,” or “Your daughter doesn’t pay attention,” is a common concern. That is especially frustrating for those amazing kids who hear and take in everything, but are believed to be ‘slow learners’. The IEP goal? “Your child will turn to their name most of the time, when they are called, without prompting.”

Do they make eye contact with other children, not just family members? This important social skill is a major first step in normal play. If you watch a group of 3 or 4 year-olds, they don’t ask, “Who wants to play chase?” There’s no memo or adult prompting; they just look at each other, screech, and start to run around. Finding social situations where your child can practice is so much more important than how well they play Angry Birds.

The ability to speak is paramount. That doesn’t mean hours and hours of Speech and Language Therapy by itself. The Child Development Center has seen hundreds of children who developed speech by utilizing a combination of therapies with medical evaluation and appropriate, effective interventions. Our older apraxic patients have different problems.

For children who can speak, do they use their voice at the appropriate times (naming, answering) or only when prompted? Is there a great deal of echolalia, saying the same sentence as the questioner? Does scripting seem to make sense and, at least, be in context, or does the conversation seem to be gibberish? These rituals are practice, not to be discouraged, but the child must generalize language to appropriate situations. Kids judge other kids.

Sensory difficulties are a major hurdle for many ASD patients. Sounds may be too loud, lighting to harsh, and experiences so stimulating that children exhibit repetitive motor behaviors (stimming). For both the student and the classroom, addressing these issues (e.g., sensory diet) will make things go more smoothly.

Aggressive behaviors will not be tolerated for very long in any educational situation. Rather than making excuses for why your child behaves in a disruptive or violent manner (whether SIBs or directed at others), gastrointestinal health and ABA intervention is more important than any academic effort.

We are talkin’ ‘baby steps’ here. Autism is not someone’s fault. It is a condition of the 21st century that requires appropriate medical and therapeutic intervention.

Autism Injury

Sunday, February 16th, 2014

Autism is an injury. At least, it feels like that to me.
Injuries can be severe, moderate and mild.
Damage can be acute or smoldering.
Disturbances might arise in the womb, or occur up to 3 years later.
Recovery might be complete, functional, sub-optimal, or absent.
Improvement might be immediate, or take varying periods of time.
There would be individual responses to various methods of treatment.

Where does the injury occur?
Dr. Martha Herbert has written about a new paradigm, questioning whether autism is a brain disorder affecting the body, or a body disorder affecting the brain?
Systems of origin could be genetic or genomic, from the gastrointestinal to the musculo-skeletal system, to the nascent CNS, leading to downstream consequences that we are only now recognizing.
Disruption could occur somewhere in the body at a metabolic level, resulting in the mitochondrial under-functioning that is so prevalent in ASD patients.

What can cause the injury?
There is very little documented information about the cause(s) of injury.
Genetic variations may predispose individuals, resulting in links that interfere with detoxification or directly result in missing or mis-connections.
Toxins in the air, chemicals in the water, additives in our food, alterations in the food supply, and medications can cause or continue a vicious downward spiral.
Organisms such as resistant and / or pathogenic bacteria can lead to direct injury in the intestines. The possibility that over-usage of antibiotics has led to bacterial strains that have gone awry, and results in the malabsorption of nutrients that are especially important to susceptible individuals, seems too complicated an answer.
The consideration of a fungal etiology is dismissed, or ignored, by modern medicine.
Often, the possibility of a viral cause is considered sedition.

Preventing the injury?
Individuals at increased risk require identification and intervention.
GERD is not merely a symptom to be treated with PPIs.
Repeated ear infections should be investigated for immune irregularities, and ear tubes may be preferable to frequent courses of antibiotics.
Addressing poor nutrition with Pediasure may not only be ineffective, it may lead to unforeseen immune and metabolic consequences.
Rather than simply ‘treating’ constipation in infants with Miralax, which may intensify the problem, an investigation into the cause(s) of the problem and proper use of probiotics seems preferable.
Decreasing the intake of toxic substances such as genetically modified foods, artificial flavoring and coloring, and products that have been adulterated with pesticides, antibiotics, steroids and other ‘enhancements‘, is a reasonable strategy in this toxic century, and requires intense investigation.

Treatment of the injury?
First, there needs to be a recognition of the earliest red flags, so that intervention(s) – conventional and alternative – can be instituted immediately. “Waiting for the (ASD) diagnosis” is avoidance at best and potentially harmful because of delays in effective treatment.
Exploration of the underlying conditions that present as core tone weakness, G-I and feeding difficulties, immune system irregularities and sleep disturbances may successfully address signs and symptoms that are considered ‘autistic’. This will include doing a correct ‘workup’, rather than merely calling the patient autistic.

What’s next? 
We have a lot to learn about the signs and symptoms of childhood development of the millennials.
The concept that ASD is due to an injury is not new.
We need to stop arguing WHETHER there is an epidemic.
We need to consider vaccines as only ONE of the possible causes, not the only. I have examined many younger siblings in the practice who have never been vaccinated, yet still develop worrisome behaviors.
Conventional pediatricians, child neurologists, psychiatrists and other specialties need to come up to speed, instead of depending on older literature that does not seem pertinent to the modern condition.
All of the professionals who work with ASD patients, including therapists, medical doctors, naturopaths, homeopaths, chiropractors, teachers and administrators need to get on the same page. Or, at least, read from the same books.

This theory may not be correct.
So far, by treating the condition in such a manner, The Child Development Center has been very successful helping patients recover; if not yielding a cure, producing various levels of relief from the injury.

Is Tamiflu for You?

Friday, February 7th, 2014

As a physician who cares for at-risk infants and children, I am frequently asked to weigh in on the topic of flu vaccine and the medication, Tamiflu.

Ever since the introduction of Oseltamivir Phosphate, an anti-viral preparation to ‘cure’ influenza, controversy has ensued. There are a number of websites that discuss the issue in detail, pro and con.

Forbes magazine, which generally takes fairly conservative positions, recently published “The Myth of Tamiflu“. The FDA doesn’t seem to have a problem with it; even recommending Tamiflu for infants as young as two weeks.

Consumer Reports, recently concluded, “Not unless you’re very sick with the flu or … are otherwise at high risk.” That respected medical journal’s opinion was to administer Tamiflu to the group that might get ‘sickest’ from the disease.

A typical course has been reported to cost $120, more or less. For an entire family of 4 or more, it becomes fairly pricey.
Does Medicaid or insurance pay? If they are willing to cover (call, push buttons, and argue at your own peril), you may have to wait until the prescription is authorized; thus, mitigating the “at the earliest sign of the flu” advice. Co-pays can be more expensive as well, e.g. $25 or more. Keep your Tamiflu coupons handy.

Symptomatic relief occurring 1-2 days (out of 1-2 weeks of influenza) sooner is possible, but that is no certainty. The condition may not be the ‘flu’, the virus strain may not show responsiveness, or the patient waited too long to initiate treatment.
Additionally, I am sure that Roche has a ‘Days of Reduced Productivity From the Influenza Virus’ PowerPoint slide to persuade beaurocratic personnel that their concoction is worthwhile.

Warnings listed in the Physician’s Desk Reference include:
• Severe allergic reactions.
• Serious skin reactions.
• Neuropsychiatric events, signs of abnormal behavior – how can you tell about this in your ASD affected child?
• Dyspepsia (upset stomach), with increased rates of vomiting - which is a common symptom in children, and many with autism.
• Diarrhea – another frequent physical sign in our high-risk patient population.
• “Caution in nursing” -  but it’s recommended if you’re pregnant? Also, most babies should be nursing; so, it’s OK as a liquid, but not OK in breast milk?

The Genentech website cautions:
“People with the flu, particularly children and adolescents, may be at an increased risk of seizure, confusion, or abnormal behavior early during their illness.”
“The most common side effects are mild to moderate nausea and vomiting, diarrhea and stomach pain.”

So far, the risks appear to outweigh the benefits of Tamiflu. The cost seems high, considering that the drug only results in a possible, slightly shortened course of the flu. There are important lingering questions; including, whether there are fewer complications and deaths.

Long-term outcomes will have to wait until Tamiflu is used long term. This medicine was not available in the last century, begging the question of how there could be truly valid safety information when this antiviral is administered to a 2 week-old infant.

Healthy older children and adults who exhibit the onset and suffering, or wish to prevent the flu in their virus-ridden environment, and can afford it, might give it a try.

My preference is to prescribe Tamiflu to those who are not pregnant, breast feeding, or very young children, in the hopes of preventing infectious transmission to those who are at increased risk for complications, without incurring the risks of the drug.

The greatest benefit that I can see is to the pharmaceutical company Roche,
and its member company Genentech.

Early Experience with GcMAF Therapy for Autism

Sunday, February 2nd, 2014

This is a very preliminary report about our first 15 patients who wished to administer a trial of GcMAF for their moderate-to-severely affected children, whose primary diagnosis was ASD.

Treatment utilizes a substance derived from a purified blood product, administered weekly by subcutaneous injection. It is supposed to help ‘heal’ the immune system. The background information was first described here.

Patient profiles:
♦ All of the children had a complete history, physical examination, laboratory testing, and various other interventions, and were under Dr. Udell’s care.
♦ All of the children were either on/ or had experience with conventional therapy (ABA, S&L, OT, PT), complementary and alternative therapies (‘DAN!’), and multiple medications; from Risperdal to Prozac (conventional), Namenda to Bumex (experimental), stimulant meds to anti-anxiety preparations.
♦ Patients were diagnosed by a pediatric neurologist, confirmed and documented at each Child Development Center visit.
♦ All the children had severe speech apraxia, with very little improvement from years of S&L therapy, prompting the parents to want further options.
♦ All of the children demonstrated various and persistent repetitive behaviors, sometimes quite disruptive and/or abusive (to self and/or others).
♦ All of the children experienced social isolation.
♦ All of the patients had elevated nagalase levels (>0.95) prior to therapy.
♦ Parents were made fully aware of: risks/benefits/other therapies/no therapy and wished to proceed.
♦ All the families kept in close contact with our staff and Medical Director.

Present protocol:
 The original explanation can be found here. With increasing experience, some variations have taken place, and a more conservative protocol has evolved:
• Families obtain the product from here, and are instructed to keep the vial in the freezer. • Small syringes are ordered from the local pharmacy.
• Most of the patients prepared syringes for 5 months, freezing them for storage and hand-warming prior to administration.
• Instead of weekly abdominal or arm ‘shots’, a narrow angle into the buttocks appears to be well-tolerated.
 In addition to routine laboratory investigations, vitamin D and cholesterol were addressed before initiating therapy, by testing and intervention as necessary.
 The initial dose was tiny (0.02 cc) and increases were decided each week after discussion with our staff.
 Parents agreed to keep in close contact with the staff and give weekly reports about any changes.

Experience so far (1 – 8 months):
Older (> 5 years) seem to do better than younger children, as far as improvements in communication and behaviors.
In the first months, some patients have reported no change, others show dramatic improvements in signs and symptoms, and still others have exhibited very challenging disruptive behaviors that diminished with time.
 Most parents were satisfied enough to re-order the product without nagalase re-testing or even an observation period without GcMAF.
To date, improvements appear most dramatic in the preteen females.
√ Two younger males discontinued the treatment because of no effect.
√ No parent discontinued treatment due to negative effects.
Side effects included initial hyperactivity, rashes, mild fevers.
In many of our patients who were tested – and found to have elevated nagalase levels – the parents were satisfied enough with their present protocol of G-I optimization and mitochondrial support, and have not initiated this therapy, so far.

No definite assertions or conclusions can be made, from this limited trial, at this time.
I have been impressed, however, at the dramatic improvements that some of children have made. This includes speech acquisition and usage, cognitive function advances, and behavioral changes.
GcMAF does not work in every child, but the ones who do improve have experienced change that hasn’t been apparent in many years.
So far, safety is best assured by close contact with the parents so that weekly dosages can be altered and other interventions, such as yeast treatment, can be provided.
Costs are kept to a minimum because families order and obtain the supplement directly from the manufacturer.

A more detailed report will be submitted to various appropriate venues for review and publication. Hopefully, someone will take notice and perform a more rigorous evaluation. Parents of affected children simply can’t wait for this information, if the treatment is safe enough, not too costly, and reasonable to administer. After all, medications that are approved for behavior control are expensive, as well. Furthermore, at their best, traditional pharmaceuticals possibly diminish aggression and hyperactivity, but don’t improve neurologic function.

As in all medical conditions, if you are considering GcMAF therapy for your child with moderate-to-severe ASD, you should seek advice and treatment only from a trusted professional who has examined, and is closely following, the patient.

Ten Tips to Navigate the New DSM-5

Sunday, January 26th, 2014

DSM45A recent medical report predicts that the latest iteration of the criteria required to assign a formal diagnosis of ASD will result in a decreased number of reported cases. In their conclusion, the authors state, “this effect could be tempered by future adaptation of diagnostic practices and documentation of behaviors to fit the new criteria.”

The hype seems to be that there isn’t so much of an epidemic as advertised. Some think the new standards will be a more accurate reflection on the scope of the problem. It could mean that parents who believe their children need treatment will have less access to services, because required DSM-5 criteria may not be met.

Parents and practitioners need to understand the landscape because useful interventions might not be afforded to those who can benefit most. Therapies are more likely to be successful when there is less functional impairment.

For better or for worse, families that utilize, and/or expect to receive services, will probably experience little change.

These tips might help make sure that your children get the treatments they need.
1. It’s complicated. Try to familiarize yourself with the pertinent changes in the new criteria as they apply to your child. For evaluation and treatment purposes, don’t be concerned about other conditions that have been added or left out, if they are not your child’s issues.

2. Though Aspergers’ patients may be upset that there is no longer a defining nomenclature, communication disorders are now included in a much broader sense, actually. So, take advantage of available interventions.

3. Because PDD-NOS is now incorporated, developmental interventions should become available for a wider variety of conditions, which may not have been supported in DSM-IV. If your child has been given this diagnosis previously, and few/no services were offered, such inclusion should help.

4. Documenting the level of impairment requiring support is imprecise and quite subjective. Pointing professionals in the right direction will help ensure that services are ordered.

5. Although “impairments in communication” have been eliminated, there are several other designations that cover many commonly observed problems. These include deficits in conversation, relationships, and speech.

6. One requirement for diagnosis is the demonstration of “Restricted, repetitive patterns of behavior…” Just about all stimming is going to fulfill this criterion. Plus, sensory symptoms are now included.

7. ‘Social interaction’ continues to be a key issue for the ASD diagnosis. Clinically, kids who don’t/won’t play are a real challenge. Make sure that any formal assessments include this deficit, if it exists in your child.

8. It took 17 years to get to DSM-5. Supporting information appears to be more than 3 years old; so, in an evolving epidemic, we still might be missing the mark. The good news is that the powers-that-be seem to demonstrate an open mind, at least in the conferences that I have attended. Formal evaluations may require frequent revisions to stay up to speed on this moving target.

9. No longer should doctors assign the mushy “Oppositional, sensory, ADHD, poor focus, developmental delay” diagnosis. It’s called Autism Spectrum.

10. In this highly fluid environment, the doctors, teachers, administrators, therapists, and other professionals involved in your child’s care need to stay up-to-date, so that they can steer you in the right direction.

Book Review – Ido in Autismland

Saturday, January 18th, 2014

Because autism is such a mystery, reading about it from the first-person point of view can be extremely instructive. That is why the story, Ido in Autismland, is so important to this medical professional.

There are similar recent books and videos, authored by affected individuals who convey their thoughts and feelings, so that neuro-typical readers may better appreciate underlying difficulties that lead to their unusual behaviors. What makes this different are the insights provided by penetrating and descriptive prose that transports the reader into Ido’s conflicted mind. It’s like The Reason I Jump on steroids.

Often, the issue of facilitated communication – another person involved in the download of information – is a key sticking point to establishing that such writing represents the actual thoughts that were being put forth. The teenage author makes a concerted and convincing effort to assure the reader that the information does, in fact, come from his mind alone.

Notable insights
The ability to communicate, and the lack thereof, has been the dominating force in his development. The subtitle is “Climbing Out of Autism’s Silent Prison”.

Ido emphasizes that his receptive language far outpaces his expressive language. Even if he believes he knows the correct answer to a question, it sometimes comes out of his mouth incorrectly (or not at all), due to his severe speech apraxia. This is mind bending.

Stimming is helpful, anxiety reducing, euphoria producing, embarrassing, nearly impossible to control and sometimes results in disruptive behaviors that even Ido can’t explain.

In addition to spoken language, the young author complains that generalized apraxia – the inability to move a variety of his muscles correctly – also interferes with his affect, hand movements (sign language and even pointing were a challenge), and the ability to interact properly in social situations.

Lack of empathy, or a sense of humor is not a sign of autism. That is merely how it appears. This kid has got soul, and he’s funny.

Ido’s exhortations to medical science give me help and hope.

If you are the parent of a young child who has been newly diagnosed with ASD, or suspect it, and you are seeking further information, this may not be a helpful read. Parents will do better to investigate medical problems, such as; G-I signs and symptoms, allergy related conditions, sleep disturbance, or other specific developmental concerns. As particular disorders are successfully identified and addressed, many atypical behaviors can be ameliorated and even prevented.

If you are an observer of this epidemic, AutismLand is an interesting read. Everyone can learn something from this journey through the mind of such a unique child.

If you are a professional who works with people with autism, you need to read this twice. The first time will be disturbing and challenge many of the basic beliefs. The second time, understanding will creep in and you will think of ways to incorporate such knowledge into your practice.

If you are an affected individual, or the parent or family member of an older child, this is a must-read. Ido discusses a variety of topics that will educate, enlighten and even entertain those who are trying to understand AutismLand.

Emails from a Parent Concerned about Autism

Monday, January 13th, 2014

We get emails galore at The Child Development Center. The following exchanges (which took place over 7 months) are from one insightful, articulate and appropriately concerned mother.

Such correspondence is representative of the majority of questions that accompany this complicated process of improving health so that therapies can take hold and reverse the signs and symptoms of the epidemic that is presently called ASD. This Mom covered it all!

Mom: Hi doctor… I’m just scared that my son won’t play like other kids.  I get depressed sometimes about this but do you think my son will be normal again. Do you think my son will be ok ? Will he talk soon?

Dr U: We will do our best… we are quite successful, so let’s see how the first couple of months go, and you will know much better.

Mom: He still he has not said a word yet.  Still in a bit if his world. I know you told me baby steps, but how long? A month, two months?  I’m anxious. Thank you for listening to me.

Dr U: Is he babbling any more, pointing, using signs… other signs of increased communication?

Mom: He moves his lips. On Saturday he said more. He doesn’t babble like a baby. He tries, but not that much comes out. He does point a lot.
Mom: Hi doctor I’m sorry again, but do you think my son will be ok like the other kids playing with them talking? I’m just worried. No words are coming out of his mouth.

Dr. U: That is what we are working towards. It is months that matter, not days or weeks.

Mom: What is asd tympanostubi is that something bad what?

Dr U: Huh? I think that you mean tympanostomy tubes… surgical placement of venting ducts in the ears for children who suffer repeated ear infections. In the past several years, I have become more comfortable with the procedure, especially since it decreases the intake of antibiotics.

Mom: It has been two going three weeks and nothing yet… Do they get more aggressive when taking that probiotic, like… crying, or wanting to talk but can’t. You know what I mean, right? When should I expect him to talk? Do you think he will talk before he turns 3 or after? He’s a very intelligent boy. He knows his alphabet, numbers for his age. He’s intelligent but the thing is, he has to talk and play more – run, jump – more activities outside, so he exercises. Is he lazy? He wants to be sitting all the time.

Dr U: Yes, the change in behaviors could be due to the probiotics, and his new development. So, I can’t guarantee or predict the speech, I can only promise that we can make him healthier and that should lead to typical development.

Mom: Thank you for responding fast, but, what did you mean when you said that you can’t guarantee speech? That he won’t talk at all or he will? Will he be running like other kids do?

Dr U: You worry a lot… that’s what a mom should do. Please keep doing the protocol and we’ll talk at the visits in more depth.

Mom: Yes I worried a lot…But you are not answering my question. Will my son talk soon or not? What did you mean by “I can’t guarantee or predict speech”?

Dr U: I want to be honest and reasonable. No one can predict those things with certainty. Again, let’s wait until the next visit and see the progress and we will be able to tell you more.

Mom: I was reading about vaccines – do they cause autism? Do they contain Thimerosal? What About MMR? When he turns 3 years what should I do? With the blood work will you tell me if it was the vaccine that caused autism? Or was it genetic ? I read so many stories of autism that everyone tells you different stuff about it that makes me scared.

Dr U: Since you are on the ‘net already, please read my blog(s) about this complicated issue.

Mom: Is Asperger’s the same as autism? When you said << my child >> has mild-to-moderate autism what does it mean autism spectrum or Asperger?  I was reading on google…

Dr U: Autism is one of the reasons for delayed development in childhood. Asperger’s may be one kind of autism. Mild to moderate means that there are behaviors that are good, and some that need to get corrected. If you want to read the Internet, is very accurate.

Mom: When do I have to stop the probiotic? When he gets constipated he is acting very alert and hyper – it’s that ok?

Dr U: Please, don’t stop the probiotic… If things are ok we will move forward with this protocol.

Mom: How did the blood work come out? Can you tell me something?
Mom: I have some questions about the vitiams b12 injections; will that hurt, will it burn when the liquid is going in? Will my son be safe ??? I’m scared if I have to inject him. How will I do? Are those injection inside his skin like a vaccination – please tell me more about it??? My son will start school but won’t be able to talk. Also, he will be getting his tubes next week, what should I do?
Mom: I want to ask you if hepatitis A vaccination is ok – that’s what he’s going to be getting. He will start School pretty soon. One more thing is the b12 subcutaneous – will that hurt if we don’t inject the right way? I’m afraid to inject my son – it is going to be my responsibility, if something happens to him. I don’t want anything to happen to him. Is that safe? I know I asked you that already, but my son is in your hands and I still don’t see any talking yet – no mouth movement. So, hopefully, with the school and the b12, there will be more improvement. He will also be getting his tubes in his ears next week.

Dr U: Hepatitis A vaccine seems to be important – there was recently a HepA outbreak from some frozen berries in the western US. The mB12 shots shouldn’t hurt – think about a diabetic child who has to get 3 or 4 shots per DAY!

Mom: I’m a little bit concerned. My son has been bleeding  from his nose for two days. Could that be ’cause he is taking too much vitamins, or what could that? He bleeds, but not too much just from one nostril and that’s it. 

Dr U: It is normal, your son’s blood count is OK, and it isn’t the vitamins.

Mom: My son had his ear tubes put in already and everything went great. But I’m still concerned that he’s still bleeding from one nostril. I’m going to make a doctor appt. That is not normal for him to be bleeding and it started when we gave him all that vitamins. I’m not to sure about giving him to much vitamins. What do you think?

Dr U: I think that, if his development is moving along in a good way, you should stay that course.

Mom: But the thing is he’s not talking yet. No mouth movement yet.
Mom: I was given my son the medicine melatonin with yogurt but he threw up. What should I do?

Dr U: Some patients have even put it on pizza (not too hot though), so it should work in anything – not sure why he vomited, but maybe try it in something else and let me know.

Mom: I got the injections already. Should I start on Monday or wait another week with melatonin? What do you think?
Mom: I need a letter from you with the diagnosis, so he can get more therapy. Please, if you can fax it to me… Anther thing I wanted to ask you is how long does it take for the vitamin b12 injections get effective for my son to talk or say at something? I’m very disappointed ’cause it still hasn’t worked yet. He has gotten two injections already on Monday it will be his third one. Please let me know if I’m doing something wrong.

Dr U: Letter created and sent, 3 days later.

Mom: We have a problem. The last injection he had, he got so tight that that fluid was coming out again. What should I do? The nurse does not want to inject him any more. If you tell one of your employees to come to my house in the morning to inject my son,  please, I will pay them. We can’t – he’s to strong he gets very tight muscle contraction and the fluid comes out help please… I hope you got my message earlier. I need to know what to do so my son doesn’t get so tight that his muscle contracts and so the fluid starts coming out… I’m very depressed and anxious and it is to hard for me to stick him. Please call.
Mom: Thanks. I saw some videos, but my concern is how long will it take him to talk? There have been 3 shots already and still nothing is coming out from his mouth. How long after do I have to wait? Sorry I’m being annoying. The thing is, I’m concerned that my son is not talking yet. What else does he need for him to start talking? 1. B12 shots 2. Therapy 3. ——– I don’t know please tell me?

Dr U: You are not annoying… you are an appropriately concerned mom. I just can’t guarantee what/when is going to be the key to helping speech and language. My experience is that it can take up to 8 shots (1 month), but improvements happen before that (more verbal, singing, eye contact). So far, we’ve been doing OK. This is difficult, but if you and the family are seeing some progress, that should help you get the support that you need to see this through.

Mom: I wanted to know if I should do an MRI? I just want to know how much he has and everything. What does a MRI tell you about autism? I made an appt for the MRI. They said it will take up to two hours for the MRI ’cause they order the BAER. What do you think  - can he be put to sleep for two hours? She said first they give him something liquid to calm him down, then either IV and the mask. What do you think? I’m just scared?

Dr U: The MRI will probably show no abnormalities – if the child has never had any seizures, this would be even more likely to be negative. With that in mind, I do not see the need for an MRI at this time if you are concerned about the anesthesia.

Mom: Hi doctor I have few concerns. I want to enroll my son in ABA, but they don’t take my son’s insurance. So I have to pay out of my pocket and you know that program is expense. But my concern is, when they asked me who was the doctor who diagnosed my son with autism, when I said your name, no one has heard about you. They asked me if you are a psychologist or a neurologist. When I say a DAN doctor, they don’t know…What am I supposed to show those people?

Dr U: This spawned a flurry of email and faxes to demonstrate that I am a medical doctor, Board Certified in Pediatrics and Neonatal Perinatal Medicine, with my most recent special training provided by the Medical Academy of Pediatric Special Needs.

Mom: The ABA therapist came over and did and evaluation… The reason why I’m writing you is cause she also mentioned to me about speech apraxiaShe asked me to tell you if you can diagnose him with that so I can give it to CMS Title 21 to the insurance company, so they can approve more hours in speech.

Dr. U: Speech is one of the earliest communication skills. Next, comes understanding. Sometimes, understanding comes first, and then the child can become very agitated, and display other behaviors. Yes, speech apraxia - the inability to speak – is a concern. I have documented this diagnosis in your child, already. I think that the course that we are pursuing gives children the safest and most reliable choice, and I am glad to review other options with you. Of course, S&L therapy is indicated.

Mom: But do you think that he will not talk at all ever? What do you think ? What else should I do? Put him in more speech therapy, like I was told by a speech pathologist ? Like you said, this is a major concern. Will he talk ever?

Dr U: Well, that is why we are giving any protocol that is reasonable and successful the best chance. Speech and language therapy, in addition to the biomedical, is ‘what the doctor ordered’.

Mom: I was reading your article on autism and apraxia was is the difference between those two? Is that something that autism kids have also ? Or is that a different diagnose ? Can my son get worse or better in the future? Will the Aba, plus speech and Ot therapy help him get better or will he need something else?

Dr U: Speech apraxia – the inability to speak when you want to – is one of the symptoms of autism. The biomedical protocols that we are doing, plus ABA and Speech and Language therapy is the most likely to have success. All of the other protocols that are out there are VERY EXPENSIVE (> $4000 up to $20,000) and have not been documented to work. There are no pills for this and you can’t buy your way out of autism/apraxia.

Mom: What else can I do for my son? Speech aphasia is that something to worried about?

Dr U: Yes, speech apraxia – the difficulty with your child’s delayed speech – is something to be concerned about. We are doing our best.

These are the exact thoughts and letters of every one of our families. Autism, especially when there is speech apraxia, is one of the most difficult diagnosis I have ever encountered, as far as 1) the reason for the problem and 2) the treatment(s).
Parents, I understand your worries.

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Brian D. Udell MD
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Office phone – 954-873-8413
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