Posts Tagged ‘advice’

Toilet Training and Autism

Sunday, June 14th, 2015

iPotty. Available @Amazon.com ~$30

Every parent faces the chore of imparting proper potty skills. Then, there is toilet training toddlers affected with autism.

I was recently interviewed about the special challenges that face parents as their affected offspring embark upon this important developmental milestone. Here are the questions and answers:

What challenges do children with autism have, either mental, social, or physical that would make learning a skill like potty training difficult?

Many children who are affected with autism have other medical conditions – known as comorbidities – that affect their health, especially in the gastro-intestinal tract. Poor G-I function can lead to diarrhea, constipation, GERD, and inflammation. Sometimes it can occur following the overuse of PPIs, antibiotics, or Miralax™.

Multiple sensory issues, accompanied by increased pain tolerance (or decreased perception) need to mature, so that traditional techniques are more likely to be successful.

Decreased energy production leading to decreased abdominal and rectal muscular function presents physical challenges for affected patients.

As these issues are successfully addressed, parents see improved toileting abilities.

Toilet Electric

Patent US 4162490 A 1978 Fang-Cheng Fu, Chien-Hung Fu A battery-powered toilet training device… to provide improved training of toddlers… A non-contact electronic sensor is used to detect the presence of urine and stool in the receptacle. A battery-powered toy is used to produce an audible signal and a mechanical motion to reward the toddler and to signal the trainer when the toddler’s elimination begins.

What effect does parental support or having a parent who is educated on autism have on the development of a child with autism?

Understanding that schedules are important to many children with ASD can be a key feature for achieving success. I usually ask parents to try to put the child on the potty one or two more times than the number of stools per day. That way, the child has more chance for success. Some schools will take children frequently.

Knowledgeable parents pay attention to the signs that the child wants to/ needs to/ is going to… “do number 2”. Sometimes, they are lucky, and catch it early enough. Literally.

Assistance is provided by achieving G-I health with non-inflammatory, non-processed, lower sugar, better digested foods.

There are even special sensory challenges, such as the noise from a bathroom hand dryer, that make facilitating acceptable auditory functioning paramount for success in that venue.

Have you ever had parents come to you needing support or information in the area of potty training?

This is a common problem that becomes increasingly noticeable as children enter preschool years. General-education staff are usually resistant to students who have not acquired this skill. There are lots of websites, but most parents have explored that route.

Behavioral, occupational, physical and neurodevelopment interventions by professionals can be quite helpful, especially when referred by previous successful families.

Do you have any research or stats on the relationship of potty training and autism, or on the topic of potty training as it pertains to autism?

The earliest work on this actually appeared when Dr. Leo Kanner first described Autistic Disturbances of Affective Contact 75 years ago. A majority of the children displayed gastrointestinal signs and symptoms that were overlooked at the time (by the father of modern child psychiatry).

Another unfortunate reality is that, medical evaluation has been slowed by the inclusion of all ‘retarded’ children in many of the early studies about this problem. A 1970’s article entitled, Toilet Training of Normal and Retarded Children, appeared in the Journal of Applied Behavioral Analysis.

In the 90’s, Additive Benefits of Laxative, Toilet Training, and Biofeedback Therapies in the Treatment of Pediatric Encopresis represented the state of the art. Comorbidities were not recorded, and autism was not an outcome measure.

At last, in this century, research documenting ‘normal‘ acquisition of bathroom skills appeared in a respected pediatric journal. A review entitled, Toilet training individuals with autism and other developmental disabilities concluded, “Shortcomings to currently available programs are highlighted and future areas of study are suggested.”

A ‘model for treatment‘ has been offered in a respected research journal. It was based on two patients.

There is plenty of room for improvement in our understanding and treatment of this difficult problem.

Stopping the Autism & ADHD Supplements

Saturday, June 6th, 2015

I once asked Dr. Dan Rossignol how to cut back on the multitude of supplements that children take for ASD and ADHD. The leader of the Medical Academy of Pediatric Special Needs, simply stated, “Brian, it’s easier to get kids on them, than off.”

Often, a really difficult patient arrives at the Clinic with many, many medical issues. ‘Stims’ appear way out of control. Language is at a bare minimum, if at all. This is not the time to stop anything. Or, it may be the time to stop everything! Another patient is doing great, and the family wants to travel – perhaps without a suitcase of vitamins.

Until more research and information is available regarding the specific cause(s) and treatment(s) for developmental conditions known as Autism Spectrum, practitioners need to figure out our own protocols for starting AND stopping the myriad of sometimes helpful products.

Methyl B12 injections. Let’s begin with a favorite, as far as kick-starting the difficult sign of speech apraxia. Reasons to stop may include:
1. There are just more ‘stims’, without any vocalization improvements.
2. G-I problems appear to interfere and amplify aggression-frustration-distraction-focus. In this case, there may only be a temporary halt.
3. If the child just won’t ‘shut up’, it may be time to give this vitamin a rest.

Antifungals. Medications, such as fluconazole, require frequent laboratory evaluation and should be discontinued as much as is tolerable for the patient and family. Citrus seed extract, turmeric, apple cider vinegar, and the like, may be given as long as they are accepted.

Multivitamin preparations. Once the child achieves a healthy, varied diet, it’s probably OK to discontinue this fairly expensive supplement. Let’s see… a healthy, varied diet… that will be… ~2025?

Oral glutathioneWhen the correct liposomal protein is utilized, it is one of the most effective products for attention, tone and apraxia. Once inflammation from known and unknown sources is reduced to a point that the child’s immune and detoxification systems can handle it, there may be no further need. Let’s see… reduction in environmental toxins and the high-risk patient’s overreaction to inflammation… that will be… ~2025?

Probiotics. Today’s children are exposed to genetically modified foods, steroids, antibiotics in everything, and attacks from all new kinds of cooties. The best way to battle this situation is a dense concentration of varied strains of high quality bacteria. Let’s see… a decrease in toxic substances and germ killing products… that will be… not in this century.

Special diets. Many parents are eager to re-introduce the forbidden foods. Once a diet is undertaken and positive results are observable, plan on about 2 years of restrictions. When the diet is expanded, choose one at-a-time, at weekly intervals, in order to notice any problems.

Calming supplements. To the extent that magnesium, tryptophan, theanine, taurine, GABA, and/or pycnogenol, are helping, subsequent decrease in self control or aggression might follow their discontinuation. This should be relatively simple for a parent to observe. Restart as needed.

Metabolic enhancements. Stopping products, such L-carnitine, L-carnosine, CoQ10, and/or others may result in observable behaviors, such as weakness, tiring, easy fatiguability, poor attention and focus.

Knowing when to say no:
Combining biomedical treatments with the proven traditional therapies, such as Behavioral, Speech & Language, Occupational and Physical Therapies, results in palpable improvement. Discontinuation may be a real mistake.

At the end of the day, as long as a supplement is safe, possibly effective, reasonably priced, well-tolerated, and doesn’t result in any prolonged negative behaviors, parents are quite satisfied when development gets on a normal trajectory.

Likewise for stopping them. If it doesn’t appear to make a difference (even after 2-4 weeks), doesn’t seem to be worth the $, may be causing more prolonged negative behaviors than improvements, and development proceeds at a normal course without it, there may be an opportunity to discontinue. Then, watch closely.

Aspertools for Asperger’s Spectrum

Sunday, May 31st, 2015

There is a great deal of medical information to be learned about the autism epidemic of this century. Aspertools: The Practical Guide to Understanding and Embracing Asperger’s, Autism Spectrum Disorders, and Neurodiversity is a useful book to read and keep in our growing libraries.

It’s an interesting story in it’s own right.
The author is an orthopedic surgeon, professional heavyweight boxer, writer and film maker. That background, plus his life as the loving father of a special needs child, weaves a fascinating thread throughout the text.

This book is helpful for many parental challenges, not just Asperger’s Syndrome.
“Everyone… should be encouraged to discover their passion and then pursue it. If you can make a living at it, and if you can help others while you do it, so much the better.” Dr. Reitman talks about behaviors that get “amplified” in an Asperger’s patient, so many of the insights could work with ADHD, ASD, and oppositional behaviors, as well.

It’s best read by both the Asperg-er and the Asper-gee (those interacting with an Aspie).
Each chapter is presented from multiple points of view, including an expert teacher and the author’s daughter, who has the condition (and more), and provides helpful hints and useful action plans.

It’s a great place to start for a family looking for answers.
Patients with Asperger’s Syndrome have some common challenges, for sure. However, on closer examination, there is a great deal of diversity.
Dr. Reitman covers topics such as anxiety, meltdowns, sensory issues, transitioning, repetitive thoughts and “hyper-interests”, and socialization, with common sense techniques that deserve a trial.

The book also provides insights for experienced parents.
Aspertools contains information that makes sense and is easily applied to real life situations. Understanding that video games provide (virtual) socialization and an increased level of control, provides food for thought. Additionally, there are tips for limiting choices “to avoid ‘No!'”, practical concepts, such as breaking larger tasks into smaller ones, and the importance of time management.

Neurodiversity
Historically, the difference between Asperger’s and Autism was the age of language acquisition (later in the latter). The DSM 5.0 has subsumed the diagnosis under Spectrum Disorder. The delay in typical socialization is now being recognized as a common factor.

Autism expert (and patient) Jim Sinclair first spoke about the concept of neurodiversity in 1993. Aspertools contains informative vignettes, insightful humor, pathos, and practical ways to chart a successful course for an ‘Aspie’. In short, Dr. Reitman emphasizes the need to look at the world through another’s eyes.

In some ways, being less obvious than their ASD cousins, Asperger’s patients get the short side of research and successful intervention. This text paves the way for a better life for affected families.

Understanding Autism Better

Sunday, May 17th, 2015

A growing number of children with tiny genetic differences, known as copy number variations, have accompanied the steady increase of patients who visit The Child Development Center.

Often, the conventional advice is that 1) such anomalies are probably not significant, and/or 2) no information is available about ‘that’ particular abnormality.
Do not believe it if your doctor has only told you that, “The chromosomes were normal.”
Take a moment to read the results yourself.

Chromosomes are structures inside our cells, mostly made of DNA. Genes, the basic building blocks of life, are located there. Suspected errors are sometimes only 1/1000 of an inch long! There seems to be a controversy about how different professionals understand the ‘not enough – too much – transposed’ pieces of DNA. How difficult is it then, for parents evaluate?

The basics about genetic results have been previously discussed here.
A specific description about copy number variation is described here.

Results are already available in children who have had a genetic testing, since they are included in the ‘Fragile X test’ (one of the known genetic causes of ASD).

Why perform a chromosomal test?
It should be required in all children who have a Spectrum diagnosis. It’s much more likely to be positive than an anesthesia-requiring MRI or EEG (especially in the absence of seizures).
The argument that testing is not necessary because, “The mom is not having any more children,” is specious. Such information can be quite important for the patient. If there are other people who have the same small chromosomal variations, they can add a great deal more knowledge about your child than merely Googling the cause and treatment of autism.
Additionally, as the future brings more and more information about the performance of those particular pieces of the chromosome – and the genes residing therein – there is added hope that it will lead to specific treatments, or regimens that might be avoided (such as, say, vaccinations) in affected individuals.

Which is the best chromosomal test?
For ninety-nine bucks, 23andme is not the best bet. A saliva sample yields information about ancestry, predisposition to certain traits (e.g., digestion, taste, metabolism, even HIV resistance). However, the SNPs (tiny genetic variations) that are tested are not indicative of ASD.

According to a formal consensus statement of genetic experts, chromosomal microarray (CMA) testing of the blood, “…offers a much higher diagnostic yield (15%–20%) for genetic testing of individuals with unexplained developmental delay, intellectual disability, ASD or multiple congenital anomalies…”
This is a >$1500 blood test (listed here) .

Lineagen advertises that their buccal smear test (a swab from inside the cheek) identifies the most number of changes that are related to autism diagnoses, and is superior to those offered by other labs.
The cost exceeds $5,000. Without insurance, that amount is often prohibitive. As data accumulates, so will the knowledge about the value and validity of this method.

How to read the results of chromosomal microarray testing?
Unless the microarray contains the text, “XX Normal Female,” or “XY Normal Male, no abnormalities reported,” continue reading and ask the lab or a trusted professional to interpret.

How to use the results of chromosomal microarray testing?
Go to the database SFARI gene,
Click on the Copy Number Variant button,
Click on the gene(s) with variation, and follow the table to the letter that best matches your child’s findings.

Conclusions:
Parents often exclaim, “I don’t care what the exact diagnosis is, just make my child improve!” However, the more precise the analysis, the more likely it is that treatment will better target each individual’s physiology.

Knowing this information about your child is valuable – not only in the future, but adds to understanding and treatment for the present situation, as well.

Addendum:

(New York Times 5.14.15)
U.S. Introduces New DNA Standard for Ensuring Accuracy of Genetic Tests

(Journal American Medical Association (6.15)
Copy Number Variations and Cognitive Phenotypes in Unselected Populations

Chromosome 7 flaws alter chemical tags throughout genome

 

Talking At TACA

Sunday, May 3rd, 2015

I had the privilege of speaking at the Talk About Curing Autism Conference, which was held in Philadelphia this weekend (5.1.15).

The topic that I was asked to present was Mast Cells. Dr. T C Theoharides is a world’s expert on this subject, but couldn’t attend, so I was asked to lecture in his absence.

The Talk
Mast cells are a type of white blood cell that exist is various locations throughout the body, and are responsible for protection and healing. They do their work by discharging chemicals, such as histamine, from packets that are contained within the specialized cell.

Dr. ‘Theo’ has published a great deal of the research about these critters, and among his discoveries are the following:
 Mast cells exist in relative abundance in the skin, but also in key areas of the brain that ultimately affect sensory and cognitive function.
 The cells have an intimate physical and chemical relationship with the blood vessels, nerves, and other immune cells inside the brain.
 Mast cells function differently inside the brain than in the skin, releasing their chemical contents in different ways and with a variety of substances other than histamine.
 They could be responsible for ‘brain allergy’ and many of the signs and symptoms of ASD, such as brain ‘fog’ and irrational outbursts.
 Prevention of mast-cell release inside the brain may be a valuable tool in the treatment of autism.

TACA
The organization was founded at the beginning of this century as a parent support group to discuss the growing epidemic about which doctors and other professionals did not seem to have a clue – from diagnosis, to cause, to treatment or prevention.

The mission statement includes a belief “in early diagnosis, intensive therapies and medical intervention for children affected by autism. With early intervention, medical treatment unique to each person’s needs and necessary support services for families many children can improve greatly and some can recover from their autistic symptoms.”

“From a grassroots beginning in Southern California, TACA expanded nationwide and now has a physical presence via our Chapters in 23 states and a virtual presence in the rest of the nation.”

Final thoughts
In the beginning, there was ‘Defeat Autism Now!’  – a group of physicians (DAN! doctors) and parents, searching for answers about how to understand and help patients affected with ASD.

That organization has grown and given rise to the Autism Research Institute and The Medical Academy of Pediatric Special Needs. Now, Autism Speaks, The Autism Society of America, Generation Rescue, and many other local organizations have emerged, dedicated to bringing relief to this modern epidemic.

In the medical vacuum that has appeared since the rise of ASD, doctors have yet to really fill the void with solid research or reliable interventions. What the autism community needs is either a cohesion of the disparate charities that already exist, or a new entity that helps to raise dollars for primary and clinical research that yields even more knowledge and hope.

When Methyl B12 Doesn’t Work for Autism

Sunday, April 26th, 2015

pdr2The Physicians’ Desk Reference is the text that professionals turn to first, when checking on a prescription medication. Though it contains more a thousand pages describing 330 medications, the condition ‘speech apraxia’ doesn’t appear.

That means that conventional medicine has formally admitted that there is no pharmaceutical treatment for one of the core signs of significant Autism Spectrum Disorder. The result is that families will seek relief elsewhere.

The most studied and proven treatment is Speech and Language therapy, in some combination with other important traditional treatments, such as ABA or OT. Astounding recovery may take place, depending on how early a problem is recognized and addressed.

What happens when these modalities are not effective?
More therapy? Really?
That’s all you’ve got doc?

The use of vitamin methylB12 injections has shown safety, tolerance, and improvement in a subgroup of individuals in a 2010 study. At a recent MedMaps.org conference, it seemed to be the most utilized methodology by the experienced ‘DAN’ practitioners in attendance.

So, what if the mB12 injections aren’t working? 

1. Be patient. Depending on the child’s age, it could take up to a month or more of ‘shots’ to achieve perceptible results.

2. Be realistic about the next developmental step. Non-verbal children may simply exhibit increased oral ‘stimming’, including shouting, teeth grinding, making bubbles, drooling, or biting (just about anything). If the child already speaks, look for more words that require less prompting and new words to appear intermittently. The next step is speaking to toys and family members, and socialization may then generalize.

3. Don’t forget, we don’t teach toddlers how to speak, they just do it. Continue or even increase the Speech therapy. Achieving optimal health and the ability to learn must be complemented with proper instruction.

4. Suspect on-going inflammation. Yeast, bad bacteria, and food intolerance could be using up much of the energy that it takes for the correct areas of the brain to wake up.

5. The suggested dosage is 64.5 mcg/kg subcutaneously every three days. That equals ~1mg for a typical 3 year-old. Many practitioners will increase the dose and frequency if there is little response.

6. Check for a problem in the pathway leading to glutathione production. A genetic mutation in the step that makes folinic acid (MTHFR), or too much tylenol blocking the normal formation, may be interfering with mB12 treatment.

7. The practitioner may wish to add to that detoxification channel with the use of DMG, TMG, and/or N-Acetyl Cysteine.

8. Other medications that the child is prescribed, such as stimulants and anti-anxiety preparations, may be impeding progress and interfering with recovery.

9. Parents are often confused about the various formulations of the vitamin; including sublingual, patch, pill, and lollipops. It is water soluble, leaves the body easily, and needs to be administered in a form that slowly leaks into the circulation. The successful substance is injected subcutaneously – under the skin and into the fat.

10. The preparation should be ordered from a reputable pharmacy that is familiar with the product. Simply changing the compounding dispensary may improve results.

Bottom line:
What do you do when the methyl B12 still doesn’t work for speech apraxia?
That is a very difficult problem.

Ten Reasons Why There Is No Autism Pill

Saturday, April 18th, 2015

“If you have seen one child with autism, you have seen one child with autism,” is an often-used aphorism. An important corollary: so far, there are only patterns to follow, and a single ‘cure’ may not be the cure.

There isn’t one kind of autism.
It’s like saying we’re going to find a cancer pill.

Controversies have existed from the first time the diagnosis was proposed; beginning with the ‘Refrigerator Mom’ theory, to the contribution of genetic influences, and the role of environmental factors (including the vaccination issues). The enigma has slowed research, while these matters are being sorted out.

Multiple systems are involved, including gastrointestinal, neurologic, muscular, and immunologic. That makes the documentation of recovery a moving target, reducing the likelihood that there is one pill.

There are multiple levels of system involvement, including genetics, proteins (proteome), metabolism (metabolome), body flora (microbiome) and those interactions.

Autism is freakin’ complicated.

The cost of researching, producing, testing and bringing a brand-new pharmaceutical exceeds 2.5 Billion dollars. Market size is important, and apparently 1/68 children does not meet that target. Unless it’s your kid.

Autism is freakin’ expensive.

There are no specific biomarkers, which are key laboratory or other diagnostic findings that identify a specific condition. That means there are few ‘levels’ to follow that identify severity or response to treatment.

The spectrum contains a variety of signs and symptoms that change over time and vary among individuals, including identical twins. There are various presentations, from mostly apraxia to mostly social isolation, and lots of combinations in between. That makes the evaluation and documentation of response to therapies problematic.

Since environmental factors have been implicated as an issue, it’s clear that pollution and toxins have been getting worse, not better. That has resulted in increasing numbers of affected people with more complicated problems. The light at the end of the tunnel seems to be moving farther away.

Conventional medicine isn’t leading the way, and falters even in the pursuit of assistance. Simply advising more therapy is frequently inadequate. Stimulant and other central nervous system medications can be a nightmare. The belief that ‘alternative’ therapies are kooky, or even harmful, polarizes – and little progress emerges.

There is an audible silence by way of a national voice towards solving this epidemic. When John Kennedy said we could get to the moon and back, America found a way. Autism needs more heroes, role models, and spokespeople.

All of that being said, it doesn’t mean that physicians cannot do appropriate testing to discover variances and abnormalities that are clues to downstream signs and symptoms to treat, and upstream interventions to alter the course.

In the absence of a pill, early detection and intervention successfully addresses many of the most debilitating and costly complications.

That Kooky Autism DIET

Sunday, April 12th, 2015

Just about every one of our patients “do the diet”. It’s different for each child. Parents are asked to avoid the foods that test in the highest range of immunoglobulin-4 (that’s I-g-G ‘four’) levels.

That is considered ‘kooky’ by medical establishment standards. I have treated several patients under the age of 7 years, lately, who were taking Zoloft, Prozac, Vyvanse, and Intunive in combination and pretty high doses, prescribed by prominent local neurologists. That, apparently, is not kooky.

The ‘diet’ is considered risky by medical establishment standards. Those are the standards that do not require testing of thyroid, lipid, vitamin, iron and other important parameters associated with autism. Checking levels is, apparently, kooky. Treating vitamin and mineral deficiencies in patients with ASD is, somehow, even kookier.

The experience of thousands of families is this: when children avoid those foods to which they are most reactive, there is an improvement in ‘brain fog’, communication, bowel movements (and, often toilet training), and aggression.

I know this to be true for two reasons. One, ‘The Diet’ – whatever it may be for each individual patient – is a pain in the ass for the family. The parents follow it because they see improvement. Two, when children transgress there is a price to be paid – in regression, yeast, sleep, hyperactivity and other behaviors.

The conventional wisdom is that IgG-4 food allergy testing is useless. That was the declaration made by the European Academy of Allergy and Clinical Immunology (EAACI), 7 years ago. The paper was entitled, Testing for IgG4 against foods is not recommended as a diagnostic tool.

It is clear that, if the problem being investigated does not include the core signs and symptoms of autism, such testing may be irrelevant.

After appropriate laboratory testing, observable results may take up to 2-3 months. Embarking upon the child’s specific diet is often challenging, but rewarding. Knowing that the results are accurate is verified when ‘fog’ lifts, there is faster processing, or less anxiety.

Skeptics frequently point out that diets are ‘dangerous’, due to vitamin and other deficiencies. Close measurement of somatic and laboratory parameters assures grandma (and others) that this protocol results in positive nitrogen balance by promoting health and preventing illness. As a result, appetite often improves and food choices become even more varied.

At a recent medical conference, one of the presenters expressed a lack of confidence about the IgG-4 food allergy findings. Those statements were challenged, and it was clear that the participants who encourage such dietary restrictions consistently observe significant positive results.

The Physician’s Desk Reference, the text that doctors use to check medications, contains ~1000 pages. There is not one mention of a treatment for speech apraxia, or eye contact. Physicians don’t seem to get it – if conventional medicine admittedly has little to offer by way of tangible treatment for their affected offspring, parents will search elsewhere.

There isn’t one ‘best’ diet. There are many reports of improvement with GAPS, FODMAPS, GF/CF, and others. Plus, there may be no value to applying the results to other conditions, such as asthma or eczema. However, imagine a parent NOT trying the Feingold diet to treat their ADHD child before giving strong, addictive medicines that carry many side effects.

Finding a diet that improves a child’s health, and gives the family some relief and hope, is not kooky. After assuring nutritional balance, it really doesn’t matter which one, as long as parents see that it is working.

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.

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Brian D. Udell MD
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