The Autism Experience: Helping practice families deal with autism

Sept. 24, 2013
New key things about autism hygienists should know can make dental appointments easier by providing an understanding of what families are going through, and how to operate without undermining the family or compromising long-earned strides toward recovery.

By Shirley Gutkowski, RDH, BSDH

“It’s a boy!” used to mean you were welcoming a little bundle of “slugs and snails and puppy dog tails” into the family. That was then. Now anyone who reads social media, listens to the news or lives out from under the bridge in The Three Billy Goats Gruff knows the chances of that boy’s landing on the autism spectrum have risen to 50%. Who would have thought searching twitter #boys and #autism would have any results, but they’re there.

The key question of “what happened?” may still take some time to answer. New key things hygienists should know can make dental appointments easier by providing an understanding of what families are going through, and how to operate without undermining the family or compromising long-earned strides toward recovery.

There are a number of “first things” to know, the first thing in this article is the status of the vaccine controversy. According to Generation Rescue, the focus is off of vaccines and on to gut health and biomedical therapies. Even so, parents of a child with autism may not further vaccinate their child or other children. Because of the stigma associated with this topic, the anti-vaccine group may not want to discuss it. Most dental history forms do not include a listing of vaccines the child may have or not, so diligence during the oral exam and awareness of other health signs is pretty important. Here’s where parents with autistic children are with respect to vaccines: they are avoiding all toxins, including mercury.

Entering into the mercury argument will accomplish only one thing: to alienate the entire family. If that’s the goal, go ahead and try to educate them. They won’t change, regardless of your facts, and they’ll stop coming to your practice, or possibly any practice. This mercury issue is also why early dental intervention is critical. Avoiding the need for surgical intervention and prosthetics puts a peaceful end to the mercury discussion.

Avoid the temptation; this is not the time to bring up fluoride. Many parents of children on the autism spectrum are extremely educated in what is called “biomedical intervention.” This thread of medicine is well founded and researched. The principles of biomed are based in the JERF (Just Eat Real Food) arena and the Westin Price diet.

In biomed protocols, prescribed supplements are based on blood, hair, urine, stool (Organic Acid Test (OAT), and Comprehensive Diagnostic Stool Analysis (CDSA) tests for abnormalities. IgG and IgE food allergy panels are also ordered. By following the guidance of their physicians (DAN/MAPS), the families adjust their diets to eliminate nearly all grains, particularly those with gluten. They also avoid dairy products, making the diet similar to the Paleo diet. The family is intent on label reading to alert them to potential toxins. They will also request the labels on all of the products you plan on using for their family members. We’re at a time now where we should have these materials handy.

The fluoride and mercury issues will resurface over and over. The biomed community objects to ingested fluoride because it accumulates in the thyroid and takes the space iodine needs. This article by Dr. Mercola may give a little idea of how ingested fluoride is perceived by this group. Regardless of your own personal views on the use of fluoride, the facts are heavily in favor of the low dose, long duration topical fluoride.

As a little reminder: the mechanism of action that fluoride asserts on the enamel is to make the tooth more resistant to acid challenges. Regardless of the fluoride content, dental decay will happen at the critical pH of 5.5 or so. The children following a biomed-style diet are unlikely to have acidic saliva. Without acidic saliva, cariogenic biofilm has a difficult time accumulating.

The science of saliva pH balancing is still ongoing. The research points to less meat and more plants in the diet. Looking more closely, similarities to the anti-inflammatory diet become obvious. If you’re keeping track, that makes three diet types that the families are following. It’s not worth going down the fluoride trail, as we have to other ways of reducing decay, which are more palatable to this group. The list at the bottom of this article provides options for dealing with decay in families who follow the biomed system.

Looping back to the mercury for a second: if the child does need surgical care options, non-mercury alternatives should be available, regardless of their longevity. As we wait for the definitive answer to how children, particularly boys, end up on the autism spectrum, the reason with the most traction to the biomed community is that these children are overly sensitive to environmental toxins like mercury. Toxins aren’t only of the heavy metal kind; there are cleaning products, food additives, and foods that effect these children too.

Levels of environmental toxins, tolerable to you or me, may cause severe personality shifts in these “Canary Children.” Canary Children are so named because of how canaries were used in the coal mines to alert coal miners to toxic gasses in the shafts. Canary children are seen as the people who are reacting first to an ever increasing threat in our environment. Many of the children following the biomed methods have high levels of heavy metals or environmental toxins, as revealed by hair analysis and blood work, and do very well after treatment is completed. Reports of negative consequences are exaggerated. Certainly, these treatments are driven by practicing licensed physicians — not metallurgists. Death rates from hospital-acquired infections, FDA approved medications, and FDA approved procedures outnumber issues with chelation therapies.

You’ve heard of the problem with food in the USA being depleted of nutrients because of the nutrient depleted soil. This is an issue with the JERF group too. Whether you buy into the idea or not, some parents with ASD find success in using supplements to make up for the shortfall. Top supplements are B6 and B12, which are synthesized in a small part of the intestine already known to be ill-functioning for those on the spectrum.

Kimberly Ruckman’s (@biomedheals) son had both autism and a condition called PANDAS (see additional information at the bottom of this article). She reports that her son is recovered from both by following a physician lead biomedical intervention. Interfering with the system by using or recommending products that re-introduce the ingredient the person is sensitive to could set the child back quite a bit. People with these sensitivities react, not like a traditional allergy with a histamine reaction or breathing difficulties, by exhibiting severe personality shifts, GI issues, sensory processing issues, and more. The heavy metal sensitivities and personality shifts are equally dramatic.

During the appointment, patient management issues should be addressed with small steps. What should you do when you need to make a product recommendation?

Look for products that are free of allergens and controversial ingredients like sucralose. A short list includes gluten, nuts, pine, dairy, saccharine, aspartame, and-as discussed earlier-fluoride. Know your OTC toothpastes too. Xylitol toothpastes, that is to say toothpastes made with high levels of xylitol or with xylitol as the only sweetener, are usually health food store friendly and are easily accepted by the people following the biomed treatments.

Speaking of xylitol, everyone is probably thinking of xylitol gum. Titanium dioxide is often used as the whitening agent in the Chiclet coating. Some families make exception for that ingredient. It is also in many standard, paste-style toothpastes. Look for gum and toothpaste that may be a natural beige color.

Managing their oral biofilm and adjusting the biofilm to be more healthful is important. A protocol that includes this feature can set them on the path to healthy teeth and mouths. Following an anti-inflammatory or JERF diet including supplements is helpful, and oral probiotics are a great adjunct well received by this group. Starting oral probiotics immediately after a prophylaxis is the best way to start the new biofilm without requiring the new strains to fight early colonizers.

Not only are families strained by having a special needs member in the family, but the crushing costs are another factor in a family breakdown. Many families cannot survive. Those that do find ongoing caregiving responsibilities to be taken on by parents, and then passed on to any existing siblings. In the case of autism, too many families have multiple children with the condition, leaving the caregiving costs to the state.

A 2010 New York Times article by Walecia Konrad reports sobering figures from a Harvard study on the costs of autism. Depending on the level of disability, it costs between $67,000 and $72,000 per year (in 2006 dollars), to care for a child with autism.

According to the Harvard School of Public Health 2006 press release, the lifetime cost of care for a person with autism is $3.2 million. In the United States, the report relays, it will cost over $35 billion per year to care for people with autism. A newer study by Autism Speaks shows dramatic increases, costing society $126 billion per year in 2012. Based on the fact that dental and dental hygiene services alone are usually counted in these numbers, it’s very likely that dentistry is not counted at all, proving the true costs to be much higher.

Preventive dental hygiene procedures could shine brightly in the face of all of this drama. Exhibiting an increased level of compassion and tolerance for alternative treatments and finding ways to support their chosen type of treatment, are in demand by parents of children on the spectrum. We must take their concerns for their children’s health seriously and help them find healthy alternative options for dental procedures.

So how is it possible to keep all of this straight? Read. Develop a protocol for persons with autism and keep it up to date. The reality of aging is that children with autism will someday become adults with autism and may not have a parent looking over all of their ingredient lists. Whatever we can do to keep these children in healthy teeth, the better. If there’s no way your practice can support this kind of protocol, find another practice in your area that will. There are holistic type practices in nearly every city, or at least close by. Obviously, developing biomedical treatment protocols would allow you to be an expert in the practice and receive your own referrals. You may even find yourself in a position to refer a parent, struggling with diagnosis or treatment, to Generation Rescue for Rescue Angel assistance. Generation Rescue has a system where successful families sign up to help families with a new diagnosis or a new desire to follow the biomedical treatment options.

People like Kimberly Ruckman (@biomedheals) and Maryann DellaRocco (@matthewspuzzle) are Rescue Angels. Maryann has found a great deal of satisfaction in success for her child by removing all dairy and all gluten products. Her boy was unable to speak or to move on his own just three days before starting the new casein and gluten free diet protocol. In that short amount of time, he started speaking and his dystonia had all but reversed. Today Kimberly’s boy is completely cured, and Maryann’s boy is nearly cured.

In June 2013 Cross Link Radio, the show hosted by the author, produced a program called The Autism Experience. All aspects of autism are explored through interviews with parents and specialists on autism disorders. A list of links to extended interviews with each guest is on the home page of the show. The interviews will supplement this article to help clinicians and those who live with autism find some hope.


Options for dealing with decay in families on biomedical intervention

  • ACP products
  • Hydroxyapatite products – Remin Pro (VOCO), HA Paste (CariFree)
  • Glass ionomer sealants – Triage (GC America)
  • Fluoride discs – Phocal
  • Gluten-free polishing pastes – D-Lish (Young Dental)
  • Florescence technology caries and decay detection – Spectra, Sopro Life, DIAGNOdent
  • Oral probiotics – Evora (Oragenics)
  • Xylitol toothpaste gels – Spry (Xlear, Inc.)
  • Clay-based toothpastes
  • (this is not an exhaustive list)


Explanation of PANDAS

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children and adolescents who have Obsessive Compulsive Disorder (OCD) and/or tic disorders, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever.

PANS is a newer term used to describe the larger class of acute-onset OCD cases. PANSstands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of abrupt onset OCD, not just those associated with streptococcal infections.


Recent information about Cross Link Radio

Cross Link Radio is the newest online radio program focusing on sharing information on health through the dental hygiene filter. No one knows how important overall health is better than a dental hygienist, and no one knows how every body system and disease contributes to dental decay and periodontal disease and vice versa than a dental hygienist. Shirley Gutkowski, host of Cross Link Radio, brings in guests from every discipline including business and leisure to the show to explore how everything relates to everything else. On Sept. 16-20, guests and topics varied from starting a business with Becky Logue owner of Dental RAT (@dentalrat), to the author of “A Healthy Girl’s Guide to Breast Cancer” Christine Eagen, and a discussion about hydroplane racing as a hobby.

The show is live on at 7 a.m. central time. People can listen live on their computer or call in to (646) 595-2938.

Podcasts of the show can be listened to any time, through Blog Talk Radio or Stitcher.

Guest or topic ideas are reviewed by contacting Shirley Gutkowski at [email protected].


Shirley Gutkowski, RDH, BSDH, is a clinical dental hygienist, speaker, and writer. Gutkowski is the technology coach and mentor at CareerFusion. She can be found on Facebook, YouTube, Twitter, and LinkedIn for speaking at your meeting. Her electronic portfolio can be viewed here.