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- To the Autism Mom in the Waiting RoomBy Cathy Jameson I see you. I see you sitting over there, but I won’t make any eye contact today. I won’t because I can tell it hasn’t been a great day for you. Maybe you didn’t sleep well. Maybe...
- To the Autism Mom in the Waiting Room
Polly Tommey is an autism mother and founder of The Autism File magazine. As Editor-in-Chief, she’s been a tireless advocate for families impacted by Autism Spectrum Disorder. Polly’s work in bringing quality information to the autism community has given ASD families around the world the help and hope they need to survive and triumph. Here, Polly discusses the magazine’s role in aiding families with a newly diagnosed child on the spectrum, and also considerations as older ASD children enter school and ultimately the workforce.
A CDC insider’s account of research fraud within the agency highlights deceit and corruption in making vaccine/autism links disappear…
Interview by Polly Tommey, Editor-in-Chief
As anyone who has been following the developments regarding links between autism and vaccines can confirm, there’s an ongoing near-blackout in the media when it comes to issues of vaccine safety and our government’s handling of autism research. In his new book, Vaccine Whistleblower: Exposing Autism Research Fraud at the CDC (Skyhorse Publishing), Kevin Barry presents the transcripts of recorded conversations between autism parent and researcher Dr. Brian Hooker and CDC senior scientist Dr. William W. Thompson regarding the inner workings of CDC autism research. With a preface by Dr. Boyd E. Haley and a foreword by Robert F. Kennedy, Jr., Vaccine Whistleblower leaves no room for doubt that the American public has been deceived about the safety and efficacy of vaccines. Autism File Editor-in-Chief Polly Tommey recently had the opportunity to visit with author Kevin Barry to discuss the book as well as the ramifications of Dr. Thompson’s revelations to Dr. Hooker.
Polly Tommey: Can you tell our readers a little about yourself and explain how you got involved in writing Vaccine Whistleblower?
Kevin Barry: I’m an autism parent. My middle son Griffin regressed into an autism diagnosis at age two in the year 2000, and I’ve been an advocate ever since. I was the first president of Generation Rescue and am currently co-president of the Elizabeth Birt Center for Autism Law and Advocacy (EBCALA). I’m a United Nations representative for an environmental health non-governmental organization and a former federal lawyer.
I became involved in a project which led to writing Vaccine Whistleblower after I was sent the transcripts of the phone calls (and the audio recordings) by Dr. Brian Hooker in the hope that I could help bring public attention to this story through media contacts. I have relationships with a few reporters who have covered the topic for years. Reporters have hardly scratched the surface of this story. Writing the book is a means towards getting Thompson’s revelations about the culture of corruption at the CDC the attention the story deserves.
PT: I’ve read this book and have to say, having a vaccine-injured son myself and knowing thousands of other families in the same situation, this was a very emotional read for me. Getting confirmation of the CDC corruption I’ve long suspected was powerful. What has been the response so far from parents who have read your book?
KB: It was emotional for me to read the transcripts the first time I went through them. I don’t cry easily, but it got to me. To learn that the CDC was even more corrupt than we previously thought was astonishing, because I already thought they were very corrupt. Dr. Hooker and J.B. Handley worked on a project for Generation Rescue which resulted in a website named putchildrenfirst.org in 2006. I strongly recommend that parents access this website where they can read further about the corruption discussed in Vaccine Whistleblower. While my schedule hasn’t left me room to attend conferences for in-person feedback, the comments I’ve been receiving on social media and via email is a mixture of sadness and anger, as you would expect.
PT: Can you tell our readers the basics of how the CDC committed fraud in its research as described by Dr. Thompson?
KB: As Dr. Thompson tells Dr. Hooker, the CDC knows that no one holds them accountable on vaccine safety research. That’s how the agency gets away with rampant corruption. There is no leadership from the White House, and Congressional oversight is a joke.
To continue reading, click here.
The toxins in most traditional treats make them a no-no, especially for kids
on the spectrum…
By Dr. Lisa Sulsenti
Trick or Treat?
I am here to answer this seasonal never-ending question.
Wait for it…
We are being tricked with our treats!
That’s right. Many adored conventional candies are made with toxic harmful
ingredients. I use to love conventional candy just as much as the next
person. In fact, I love chocolate. Call me a chocoholic if you must, but
when I began to research what really was in many of my beloved chocolate
treats, I was disgusted.
And, having three sons (one on the autism spectrum), I had to make sure we
avoided conventional sweets since many harmful ingredients are linked to
health problems such as tumors, attention deficits, hyperactivity, behavior
and neurological problems. Crazy, I know.
Don’t worry. After I show you what is in many conventional candies and why
you must avoid them, I will provide you with delicious non-toxic
replacements. Let’s look at the good, the bad and the ugly, starting off
with the ugly!
A genetically modified organism is an organism whose genetic material has
been altered using genetic engineering techniques. Many crops today are
genetically modified and used in our foods and drinks. When I am teaching
patients how to read labels, I have them identify ingredients that may be
derived from possible GMO sources such as glucose, dextrose, maltose,
fructose, highly processed high fructose corn syrup, corn starches and other
sugar variants (as well as, corn, soy and wheat).
According to Professor Gilles-Eric Seralini’s study on genetically-modified
(GM) corn treated with Monsanto’s Roundup herbicide, Monsanto’s NK603 GM
maize variety and Roundup herbicide, led to kidney and liver damage. GMOs
have also been linked to serious health problems such as tumors in rats. The
NON GMO PROJECT <http://www.nongmoproject.org/
know which products are safe to purchase as GMO- free. Lifesaving,
To continue reading, click here.
ASD and food allergy rates have risen dramatically—and they often go hand in hand…
The food allergy and autism communities generally seen as separate groups have more in common than they may realize. One has only to look at the meteoric rise of both epidemics in the last 20 years to wonder if they are connected. In fact, I contend that they are the same story with the same causes and overlapping symptoms but with different outcomes. It is as though one overwhelmed child turned left while the other turned right.
Children with life threatening food allergies often have a “mixed bag” of health concerns that can include ADHD, environmental sensitivities and gut inflammation. Typically, parents of these children pay such close attention to the food anaphylaxis that these “lesser” issues are often dismissed or medicated away. And yet, if we view this mixed bag as a collection of meaningful symptoms, a very different picture emerges. This picture mirrors that of many children on the spectrum.
In “The Function of Allergy: an immunological defense against toxins” (1991), Margie Profet confirms that any mammal overwhelmed and unable to detoxify will defend itself with allergy. This evolved defense is designed to expel the toxin(s) as fast as possible by sneezing, vomiting, itching or to prevent it from circulating by a drop in blood pressure.
Toxic exposures—any combination from air, food, water, drugs, pathogens, or vaccines—that precipitate the allergies can also result in a host of other health issues. The so-called “neuro-typical” (NT) kids with severe food allergies are not NT at all if we ask additional questions about fine or gross motor skills, unusual “gifts”, attention deficit, rage, sensory processing issues, hyperactivity and more.
By illuminating the ground shared by the food allergy kids and children on the spectrum, a broader collective awareness may emerge. This awareness will bring greater pressure to bear on addressing causes and forcing change.
The “A” words
Like the word “autism”, allergy and anaphylaxis were coined early in the 20th century. These last two were created to describe reactions to sera administered for the first time in history using the hypodermic syringe. When children began to fall violently ill following the use of this new technology, doctors scrambled to understand why. Pediatrician Clemens von Pirquet in 1906 saw the symptoms as an “altered reactivity” or allergy. Anaphylaxis “against protection” was coined by Charles Richet around 1913 to describe the condition he created in animals during immunization experiments.
Autism was coined by a Swiss psychiatrist in 1912 and Asperger’s after the work of Hans Asperger in the 1930s. Leo Kanner in the 1940s provided a foundation for understanding the environmental causes of autism.
Food allergies and autism in children increased slowly until about 1990 at which time their prevalence abruptly accelerated.
The first wave of affected children
It seemed to happen almost overnight about 20 years ago. Something changed suddenly at the same time in many Western countries to make scores of children terribly unwell:
- Food anaphylaxis: severe food allergy increased abruptly in children, but just in certain Western countries including Australia (ACT), the US, Canada, and the UK. School teachers provided eye witness accounts of the sudden surge of severely allergic children who arrived for kindergarten in the early 90s. The timing is confirmed by hospital ER records. UK cohort studies indicated that peanut allergy in preschoolers had doubled in just four years through the early 1990s, from about 1% to over 3%.
- Autism: in the early 1990s, increasing reports of autism alerted the US Centers for Disease Control and Prevention (CDC). One startling report of a “cluster” of autism in Brick Township, New Jersey drew the attention of the CDC in 1997.[i] Children born in the late 1980s and early 90s were most affected. A steep increase in autism was noted at this time also in the UK, Canada, and Australia.
This was the beginning of what are now epidemics of life threatening food allergies and autism. In the US, one in 13 children (8%) have food allergies with one in 40 (2.5%, 1.8 million) being life threatening. Childhood peanut/tree nut allergies tripled between 1997 and 2008 from .6% to 2.1%.[i] There has been a 265% rise in food allergy hospitalization among children (CDC).
Autism has spiked 1,500% in the last 20 years. One in 88 children is on the spectrum: 825,000 in the US; 89,000 in Canada; 131,000 in the UK.
Many severely food allergic children have atopy—allergies causing eczema, asthma and behavior issues. Food allergies are the main causes of ADHD according to a 2001 study in the Lancet.[iii] The opiate effect of dairy and wheat proteins on some children is well documented. Unrecognized allergies to chemicals, molds and more can also cause behavioral changes.
It is not known how many children on the spectrum have severe allergy, but most avoid certain foods that make other symptoms worse. The worst of these according to Kenneth Bock, MD in Healing the New Childhood Epidemics (2007) are dairy, chocolate, yeast-growing foods, gluten and casein. Allergies and Autism (2010) by Michael Dochniak tells the story of a boy with multiple allergies who regressed after an anaphylactic reaction to latex. The role of allergy in autism can be profound and individual.
Allergy and anaphylaxis function to defend the body against acute toxicity. The body may risk death to defend itself against perceived certain death.
Children on the spectrum can exhibit defensiveness. Cari Neal in “Tactile Defensiveness and Patterns of Social Behavior in Autism” (1997)[iv] explains that social withdrawal functions to limit tactile stimulation. Temple Grandin, quoted by Neal, confirms that for her, withdrawal is a defense from a “tidal wave of stimulation.”
Gender and age of onset
In 1944, Hans Asperger believed that girls were unaffected by the syndrome he described although he later revised his conclusion. The gender gap is as high as 10:1 for Asperger’s, and 4:1 for autism. In 1964, Bernard Rimland observed that boys tended to be more vulnerable to “organic damage” than girls.
Studies on peanut allergic children reveal that twice as many boys have the condition than do girls.
Many parents see the 18 month mark or before the age of two as a point of change or regression for children on the autism spectrum.
The general age of onset for life threatening peanut allergy (the first reaction) has been declining: from 24 months of age for kids born between 1995 and 1997; 21 months for those born before 2000; and for those after 2000, it is now about 14 months of age.
GI tract damage – gut-brain axis
Since Charles Richet’s 1913 Nobel Prize winning research, allergists have defaulted to the idea that food allergy is caused by digestive failure, or a “leaky” gut. Or it was, until the explosion of food anaphylaxis in children starting around 1990. It seemed impossible that gut failure could occur on such a scale and so suddenly.
The gut is integral to the immune system and the brain. Also called the “second brain” because it is connected by millions of neurons to the central nervous system, the gut will react immediately when challenged by toxin or trauma:
In cases of extreme stress … the higher brain seems to protect the gut by sending signals to immunological mast cells in the plexus. The mast cells secrete histamine, prostaglandin and other agents that help produce inflammation. This is protective. By inflaming the gut, the brain is priming the [it] for surveillance.[v]
The bystander effect occurs when compounds in the body/gut at the time or moment of the extreme stress become targets for allergic sensitization.
And it goes without explanation that children on the spectrum struggle greatly with gut inflammation. What could have the power to provoke this so early in the lives of hundreds of thousands of children?
Many following allergy and autism debates believe that both epidemics are man-made. And the medical community appears ready at last to consider this within the “hygiene hypothesis”:
The leading theory is about hygiene – with less infection thanks to city living, smaller families, vaccines, sanitation, antibiotics, etc., the immune system is less ‘busy’ with germs and may become more prone to attack harmless food proteins.
~ Dr. Scott Sicherer, pediatrics professor at Mount Sinai School of Medicine, New York (Sept. 12, 2012)[vi]
The hygiene hypothesis suggests that vaccination, antibiotics and bug-killing products have unhinged the immune systems of children. Humans have co-evolved with microbes and gut parasites/worms, and without them are vulnerable to inflammatory disorders. Our bug-free, vaccine obsessed, pesticide loving Western existence appears to have doomed us to allergy and autism.
Yes, the hygiene hypothesis has entered the discussion on causes of autism. A 2007 Medical Hypotheses article by K. Becker suggests that immune pathways affected by western hygienic practices may impact brain structure or function contributing to autism. Becker mentions “immunization” in this light but in confessing its “controversial” nature does not pursue it.
Clarifying the matter is historical fact. The abrupt rise of allergy and autism around 1990 coincided with reforms to the pediatric vaccination schedules of many Western countries.
In 1986, the US National Childhood Vaccine Injury Act in essence de-regulated vaccination: no one could sue a vaccine maker without government approval. Largely relieved then of liability, manufacturers moved to meet government demand addressing new “diseases of priority” established by the US Institute of Medicine.
Increases to the vaccine schedule in many Western countries began in 1987 with the Haemophilus influenza type B (Hib) vaccine. By 1991, doctors did not hesitate to give this new conjugate vaccine to two-month-old children simultaneously with vaccines for diphtheria, tetanus, pertussis, and polio. This move was unprecedented. In that year, more than 17 million doses of Hib vaccine were sold in the US alone. In 1992, additional doses of combination vaccines were included in the schedule. Hib was a revenue-generating “blockbuster product” according to a 1998 WHO publication.
At the same time, coverage rates for vaccination soared. Between 1993 and 1995, the Clinton administration’s Childhood Immunization Initiative provided federal funds aimed at 90% coverage of all infants. Vaccination became a requirement before entry into many preschools and daycare centers. By 1997-98, childhood vaccination rates reached record highs. Canada, the UK, and AU followed the American example.
In 1983, US children received 22 doses of vaccines (combined or single) for seven diseases (two months to age six). Today in the US, children receive up to 48 doses of vaccines for 14 diseases starting at birth to age six.
Unsustainable practices: Hib
The Hib, within an intense schedule that includes five-vaccines-at-once, has been the last straw in my opinion, tipping scores of children into peanut allergy.
Where the DPT-IPV with Hib is used en masse, peanut allergy follows: first in Western countries including the UK, the US, Canada, and ACT Australia, then after 2001 following its use with high coverage rates in Tasmania, Hong Kong, Singapore and most recently India.[vii]
Hib plays a role in autism according to Brian Richmand in “Hypothesis, Conjugate vaccines may predispose children to autism spectrum disorders”. Richmand suggests that the five-in-one with Hib has interfered with nerve myelin in the brain:
This period of hypo-responsiveness to carbohydrate antigens coincides with the intense myelination process in infants and young children, and conjugate vaccines may have disrupted evolutionary forces that favored early brain development over the need to protect infants and young children from capsular bacteria. [viii]
Richmand further suggests that girls who received this vaccine carry antibodies that have the potential to damage nerve myelin and result in autism in their children.
Undeniable disaster … leads to disaster capitalism
In “Save the children (and make money)” published in The Wall Street Journal (2009), writer James Altucher noted the massive rise in the last two decades in peanut allergy, asthma and more among children. The kids are sick and getting sicker, Altucher observed. So, he thought an “Autoimmune Index” would be a good idea:
Such an index would consist of the best mix of stocks that have good lower multiples that will supply the arms in our ongoing war against autoimmune diseases.[ix]
Altucher lists the drugs created for these conditions, their manufacturers, the status of their stocks and their billion dollar profits. And then without slowing he offers possible causes for the pediatric epidemics:
The increase in autoimmune illnesses and allergies in children may be due to high exposure to antibiotics and vaccines at an early age…
Are the products causing the epidemics made by the same companies now making the remedies? It seems investors can make money at both ends of the epidemics.
This is disaster capitalism.
The century old pattern of increasing drug and vaccine consumption in Western countries has meant profit for some but devastation for many more. The autism community is aware of the conflicted interests that underpin this pattern and the autism epidemic. And parents of anaphylactic children are listening. The stories of autism and life threatening food allergy are the same, with shared causes and overlapping symptoms. The “mixed bag” kids with life threatening food allergy are a mirror that, as dark as it is, brings with it millions of families equally worried about the health of their children.
With a growing awareness of the ground these communities share, my hope isthat they will connect meaningfully to force change leading to prevention of these serious — and altogether avoidable — health issues.
[i] M. Blaxill and D. Olmsted, Age of Autism (NY, Thomas Dunne, 2010).
[ii] Sicherer, et al., “US prevalence of self-reported peanut, tree nut and sesame allergy: 11-year follow-up,” JACI, Vol. 125, No. 6 (June, 2010): 1322-1326.
[iii] L. Pelsser, et al., “Effects of a restricted elimination diet on the behaviour of children with attention-deficit hyperactivity disorder (INCA study): a randomized controlled trial,” The Lancet, Vol. 377, (Feb. 2011): 494-503. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(10)62227-1/abstract
[iv] Cari Neal “Tactile Defensiveness and Patterns of Social Behavior in Autism,” (Illinois Wesleyan University, 1997). http://digitalcommons.iwu.edu/psych_honproj/66/
[v] R.M. King, professor, Northern Virginia Community College, Virginia http://www.psyking.net/id36.htm
[vii] H. Fraser, The Peanut Allergy Epidemic (NY, Skyhorse, 2011) pp. 124-126.
[viii] B. Richmand, “Hypothesis, Conjugate vaccines may predispose children to autism spectrum disorders,” Medical Hypotheses, Vol. 77, No. 6 (Dec., 2011): 940-7. http://www.ncbi.nlm.nih.gov/pubmed/21993250
[ix] James Altucher, “Save the children (and make money)” The Wall Street Journal (Mon. Aug. 10, 2009) http://online.wsj.com/article/SB124992390387319939.html
Heather Fraser is the author of The Peanut Allergy Epidemic: what’s causing it and how to stop it (NY, Skyhorse, 2011). She is a Toronto-based writer and holistic health practitioner. Her son, now 18, was diagnosed with peanut allergy in 1995. Find out more at heatherfraser.org and peanutallergyepidemic.com.
Beneficial bacteria support healthy digestion, the immune system, and overall health…
Fermented foods are a wonderful addition to your family’s diet, especially for children with autism. Fermented foods are rich in good bacteria and have many supportive functions for good digestion and overall health.
Digestive issues are common in autism spectrum disorders. Studies have shown increased prevalence of intestinal and digestive problems, including abnormal stool (diarrhea and constipation), intestinal inflammation, and reduced enzyme function.
There are many causes for these imbalances—one that can create an imbalance is the use of antibiotics. While they are often necessary to kill off bad “bugs,” these lifesaving drugs also wipe out the good bacteria in the gut, which wreaks havoc on the entire digestive system. When the good bacteria are eliminated, pathogenic organisms such as yeast and bad bacteria can take hold, creating inflammation and inhibiting digestion which can result in poor nutrient absorption and food reactions.
Beneficial bacteria, the type found in fermented foods, help colonize the digestive tract. Replenishing these beneficial bacteria, also referred to as “probiotics,” is essential. However, most people (and particularly children) don’t eat enough of the foods that supply these beneficial bacteria and help them to thrive. Even though many children consume yogurt and a few families might include sauerkraut, these are not the traditional varieties our grandparents used to make. Instead, they are typically the commercial varieties that have been pasteurized and are devoid of these good bacteria.
We have ten times as much bacteria as we have cells in our bodies, and we cannot thrive (or even survive) without these good bacteria with which we live synergistically. We have evolved getting these good bacteria on a consistent basis.
For generations, fermentation was the only way to keep food fresh without refrigeration and during cold winters. Cultures around the world all included fermented foods, often on a daily basis, which ensured the intestinal tract would be populated with good bacteria. We also would eat vegetables straight from the ground, and get some good bacteria that way. There was no pasteurization, no antibacterial soaps, no antibiotics to strip these life-giving bacteria from our system.
Today, we do not get these good bacteria. Antibiotics wipe out the good bacteria as well as the bad. Our fear of “germs” has caused us to use antibacterial soaps and sanitizers. We rarely eat these traditionally cultured foods.
While, as a culture, we have moved away from these good fermented foods, you can still serve them to your family, even when you are dairy-free. Many products are available in the store and online, and others can be made fairly easily at home – the old fashioned way. The following are some of the more common forms of fermented foods, both non-dairy and dairy options, with suggestions for serving them to your family.
Beneficial Bacteria Functions
Good bacteria bolster health in many ways: they support digestive and elimination function, break down toxins and used substances, support immune function, and produce helpful compounds to support good health.
Digestion and elimination Good bacteria digest lactose and break down protein into amino acids. These bacteria regulate peristalsis and bowel movements. They also balance intestinal pH. Adequate levels of beneficial flora in mothers help infants establish good digestion.
Break down toxins and used substances Beneficial bacteria break down harmful substances from the environment as well as substances our bodies produce that are “spent” or no longer necessary, such as bile acids and used hormones. Good bacteria break down the bacterial toxins created from harmful bacteria. They protect us against toxins like mercury, pesticides, and radiation.
Support the immune system Good bacteria produce antibiotic and antifungal substances that prevent colonization and growth of bad bacteria and yeast/fungus. Probiotics support the immune system and increase the number of immune cells. They have anti-tumor and anti-cancer properties. Probiotics also reduce inflammation and food reactions.
Produce helpful compounds to support good health Good bacteria produce vitamins that our bodies need such as B vitamins, vitamin A, and vitamin K. Probiotics produce essential fatty acids, specifically short chain fatty acids, which support gut health. Probiotics promote healthy metabolism, and help normalize serum cholesterol and triglycerides.
Fermented Food Options
Fermented foods such as yogurt, kefir, and raw sauerkraut contain live bacteria that are so important for good digestion and health.
Yogurt and Kefir: Yogurt is the most popular fermented food. Yogurt and kefir, most commonly made from dairy, are excellent sources of good bacteria. Kefir is similar to yogurt, but easier to pour and contains a
culture of good bacteria and beneficial yeast, which is particularly helpful for combating Candida (pathogenic yeast) overgrowth.
Of course, for people following a casein-free diet, dairy-based fermented foods are out. There are also non-dairy forms of yogurt and kefir. You can buy coconut yogurt and make homemade yogurt from nut and seed milk like almond milk. I do not recommend soy or soy yogurt because of their inflammatory (and other deleterious) properties. Like creamy dairy-based kefir, some people make non-dairy kefir from coconut milk.
Young coconut kefir is a great alternative for those who cannot tolerate dairy. Unlike creamy kefir made from coconut milk, young coconut kefir is made from coconut water and is a fizzy soda-like beverage. Young coconut kefir tastes pretty good; most kids like it and will drink it. You can make it yourself or buy it commercially.
Lacto-fermented vegetables. Raw sauerkraut and kim chi are both types of cultured or fermented vegetables. All cultured foods have a sour taste, a by-product of the acidic bacteria. You can really experience this with raw sauerkraut—which is very sour. While it took me a while to fully enjoy it, it grows on you and the sour flavor becomes very enjoyable. Some children love sauerkraut and its sour taste; others (especially those that don’t like vegetables) need some time to get used to it.
Kombucha is a cultured drink that is catching on very quickly among health conscious individuals. It’s delicious and kids love it. Kombucha is often mislabeled as “mushroom tea,” leading people to believe it is some sort of mushroom boiled and made into a tea. Not true. It is a brew of sweetened black or green tea that is naturally fermented with a culture of bacteria and beneficial yeast. The bacteria and yeast feed on the sugar and convert it into beneficial components (probiotics, enzymes, amino and organic acids, etc.) that aid digestion, detoxification, immune function, cellular metabolism, and more. Commercial varieties are available in health food stores by the bottle, or you can purchase a starter kit online to brew your own at home.
Eat bacteria and recover from autism?
By Jane Casey
Some families are seeing remarkable improvements through a diet focused on fermented foods. . .
The good bacteria that reside throughout the intestinal tract account for 70% of the body’s immune system. They help detoxify carcinogens, stimulate the bowels, improve the assimilation of nutrients and vitamins (digestion) and synthesize vitamins like K and a few of the B vitamins.
Good health is to a very large degree dependent on a well-functioning digestive tract. Digestion is the process of changing food into a form that the body can absorb into the blood, nourish cells, and provide energy. Of all the bodily functions, digestion has the greatest influence on our mental state.
I have 13-year-old twin boys who were diagnosed with autism at age two-and-a-half. Today they no longer have that label and I am convinced that the good bacteria saved us from a life of poor health and pain.
We began eating lacto-fermented foods several years ago when my kids were very sick. They were non-verbal, had blue circles under their eyes, big bellies and flapped their hands a lot. They went from eating three things a day (all carbs) to eating vegetables—even foods with weird textures. Today, they eat everything and don’t gag at the site of certain foods. Yippee! That was a big hurdle to climb. Thank you, fermented foods and God.
My kids’ introduction to fermented foods began with me feeding them 1/2 teaspoon of cabbage on a spoon as I chased them around the house until they conceded and ate the cabbage. The more fermented foods the boys ate, the more focused, calm and verbal they became. We continue to eat these foods today on a regular basis. For more information on fermenting and our family’s success, visit us at: janecaseyskitchen.com.
Do-it-yourself creativity can turn your home into an effective therapy center, saving you money and strengthening bonds with your ASD child…
My ten-year-old son has been in some form of therapy weekly for the last eight years. From physical therapy to speech, occupational, behavioral and social skills, Ronan has logged thousands of hours of therapy. It’s been a way of life for him and will likely continue to be that way for some time.
Here, There, And Everywhere
Ronan has four typical siblings, and I was somewhat taken aback when his six-year-old sister was recently referred for vision therapy. As Ronan’s needs have taken over much of our family’s time and energy, I was unprepared to carve more time in our full calendar to shuttle Izzy to and from therapy three days a week. However, therapy would reduce her vision issues and academic struggles that crept up last year, so getting her where she needed to be was exactly what I’d do.
Taking two kids several days a week here, there and everywhere is taxing not only on the kids but on our schedule, finances and emotions. We juggle so much already, so finding supplemental, inexpensive therapy ideas that we could do at home to benefit both Ronan and Izzy was my goal. As I don’t have the professional background our therapists do, I asked them for advice before starting home-based activities. I didn’t want to hinder or interrupt any skills my children were developing.
To follow through with the kids’ therapy “homework” and to work within a reasonable budget, I borrowed books and supplies from our therapists and borrowed college library books because of the wide selection and current titles. I got ideas from therapy-specific magazines and catalogs, and looked up websites with “For Parent” sections that described therapies, target skills, and areas to be developed in simple terms. There was a great deal of information on setting up a home environment and applying therapeutic goals to foster effective, successful learning moments.
Home Sweet Home
Activities that we’ve been able to replicate were just a few household items away! Izzy’s vision therapy hones in on eye-hand coordination, focusing close up, and following directions. Much of it is very similar to Ronan’s occupational therapy. We’ve had fun popping bubble wrap (office supply stores have this in large rolls) and using tweezers to transfer dried beans into small containers.
Anytime we can get food involved is also fun: skewering grapes on shish-kabob sticks, stringing popcorn on string (or fishing line if you need something sturdier), and picking up marshmallows with toothpicks. Use an ice cube tray to serve snacks so your child practices fine-motor and eye-hand coordination. Most of those activities can be quickly set up, are readily available and easily cleaned up.
I usually tell my children that they can’t throw their toys unless they’re outside playing with balls. Playing a bean bag toss game with their small stuffed animals (if you don’t have an actual bean bag) is fun because it bends a regular rule and can add an element of competition. Your target can be a large mixing bowl or a hula hoop. Depending on the child’s ability, you can place the hula hoop right at their feet or scoot it farther away with each toss. Then hold the hula hoop in the air so your child focuses their toss at a different angle, speed and trajectory. Take a step back with each successful toss. If your child loves a challenge, keep score!
Set up a therapy corner with shelves that house separate bins full of manipulatives which you can rotate out after several weeks to maintain interest:
- small chalkboards and chalk
- play dough and cookie cutters
- scissors and paper of varying thickness
- tracing and lacing cards
- therapy dough (great for hiding small LEGOs in!)
- beads for stringing
- stamps and stamp pads
- picture cards for matching
- clothes pins
- pipe cleaners
- magnetic board and magnets
- dress-up bin to practice donning and doffing clothes.
Expand Your Options
To maximize the potential benefits of in-home therapy, consider alterations to accommodate various activities. We’ve done this several times over the years having installed swings and a pull up bar, and created space for a home-made wooden balance beam. We’ve also brought in a small blow-up wading pool and filled it with plastic balls, and found a used mini trampoline for sensory input. An in-home obstacle course is one of the most exciting activities we do inside after rearranging some of the furniture. We then bring out tunnels, a small plastic slide, a pop-up house and sometimes even use the pillows from the couch!
The entire house—including the walls—have therapeutic potential. Chalkboard paint and shower board (found at home improvement stores) foster creativity and a host of ideas: play Tic Tac Toe or Pictionary. Practice how to make the basic lines of the letters (horizontal, vertical, circular, slash), numbers and shapes. Or just enjoy drawing together.
Real Help—Without Breaking The Bank
Therapy on a budget is quite doable. Many items found in several rooms in your home can serve a different purpose. Think about how they are typically used, then look at the objects again and ask, “What else can I do with these?” If it can be lifted, squeezed, dropped into, counted, or sorted, then you have already cut your costs. If you find that you don’t have anything useful for therapy, make a list of what you’d like to have. Then, go to thrift stores or the clearance rack of department stores and start hunting for deals.
Check out websites like Freecycle or Craig’s List for specific items for which you won’t pay full price. Don’t forget about the library! Some libraries will have puzzles, themed kits, videos and games to loan. Swap therapy ideas and supplies with a friend. Look on Pinterest for ideas on how to make your own games and projects. Not only will you save money that might have been spent on formal therapy, but you and your child will have fun interacting as he learns important new skills.
Take It Outside
Anytime you can transfer activities outside is great. A change in scenery, being able to use gross-motor movement and getting some natural sunshine are great benefits of being outdoors. Blow bubbles, chase them and pop them. Use a jump rope the traditional way or pretend it’s a tightrope walking on it as it lays flat on the ground. Pull or push a wagon filled with different objects to give it some weight. Play hopscotch, Simon Says, Mother May I, Red Rover and Hide and Seek. You’ll surely share some giggles and can foster basic back-and-forth play while creating good memories.
Fine motor skills activities can even be brought outside. Set up a water table in the yard with different objects and test if they sink or float. If you can’t afford a water table that the pricey toy catalogs sell, take a plastic storage bin and fill it with water. Use different-sized measuring cups to transfer water using the dominant hand to pour at the beginning of the activity, and then switch to the non-dominant hand at the end. Add sponges to the game. Soak the sponge and then ask your child to squeeze it—use only the fingertips at first. Switch hands to work on strengthening both.
When the water play is done, keep the water in the tub and use paintbrushes to “paint” the house, the fence, the driveway or sidewalk. Use up and down, left to right movement always trying to cross the midline. “Paint” letters, numbers, sight words, and shapes. Keep a spray bottle close by when playing with the water table, too. You can spray “paint” trees, flowers, and bushes as your child strengthens his hand muscles. Have him aim for certain parts of objects, use sweeping motions left to right and up and down; make vertical and horizontal lines and again, try to cross the midline. When dry, put other sensory-type items in the tub: noodles, rice, beach sand, cotton balls or beads. Use different-sized plastic containers and ladles, stirring or measuring spoons, tongs and strainers that you probably already have in the kitchen.
While still outside, plan for a picnic. If your child has a poor memory recall, hand him the items one at a time after playing a labeling game, saying “I’m going to give you something that we put the juice in.” Once he guesses “cup” correctly, hand it to him and ask him to grab it with his non-dominant hand. Have your child set the items in a pattern: cup, plate, napkin and repeat. If he needs help putting things in the right spot, use direction words: next to, in front of, to the left of, or to the right of. Take turns passing the snack items out to practice social skills and good manners.
After eating and cleaning up, take some confetti (either store-bought or keep it simple and use hole-punched paper) and toss it into a small section of grass. Ask your child to find 10 pieces before you count (jazz it up and count backwards from a certain number). They can use their fingers, tweezers or tongs to find the pieces. Have a small lidded plastic butter tub (cut the lid so it has a slit like a piggy bank). As your child collects the small bits of confetti, he transfers the confetti into the tub. You can also use a tennis ball, making a slit about 2 inches long. The ball will have to be squeezed (start with the fingertips) in order to open the slit to deposit the confetti inside. If your child likes a challenge, set a timer and ask him to collect a certain amount of confetti in under one minute.
If formal therapy isn’t an option for parents of children 0-3 years of age, investigate services through the local Early Intervention program. School-age homeschooled children may qualify for funding for therapy through the local school district. Call your district’s special education or related services department to find out more. If you live near a university, ask the department head of the psychology, speech and language, physical therapy, occupational therapy services or education departments if they offer reduced cost therapy session opportunities. Keep in mind that students in training would be paired with your child so make sure you are comfortable with working with an unlicensed (yet supervised) student. Parents can also learn from observing a trained therapist in the clinical setting. I’ve often been invited into the therapy room, or observed through a two-way mirrored window, in order to keep up-to-date with my children’s therapy progress.
Biomedical Treatments On A Budget
By Holly Bortfeld
Many treatments that are effective and safe for people with ASD are often not covered by insurance, but please don’t let that stop you from trying treatments that can help your children down the path to health and wellness.
1. Educate yourself. Learn how to research treatments and determine if the chances are good that your child will respond.
Read books, websites and use the medical libraries free at your local hospitals. Read about treatments, lab tests, and information you wish to discuss prior to your doctor appointments.
2. Know your child. Keep copies of all medical records. Learn what the external signs of conditions look like in your child so you can report and treat them properly.
Create a profile for your child through his/her test results and responses to treatments. Keep a journal when trying new treatments of any kind. Keep copies of every lab test, doctor appointment, therapist report, school report, IEP, etc.
3. Use your insurance for all doctors and labs possible. Code treatments for the actual condition, not the autism umbrella.
Unfortunately, not all doctors accept insurance, especially in autism. Explain to the doctor that you need to use insurance-covered labs whenever possible, not the boutique/specialty labs unless there is a really good reason and then they need to limit those to fit your budget. If the doctor is not willing to work with you on this, you might need to consider finding another physician.
4. Use your state’s Medicaid or waiver programs to cover what the insurance company doesn’t.
Medicaid programs usually will not cover any autism “specialists,” tests or treatments, but they will generally pick up co-pays for visits and prescriptions and lab tests performed at hospitals.
5. Find out if your insurance will cover compounded vitamins and supplements. Start with trial-sized bottles of vitamins first to see if your child will tolerate them before you spend a lot of money.
Some insurance companies will cover vitamins and supplements if you have them compounded into liquids or powders to fit a prescription from a physician. Ask about trial sizes too.
6. Cook your own special diet foods. Cook from scratch, or like people used to cook before stuff came in boxes.
Do you remember seeing your grandma cook dinner when you came to visit? There were no boxes. Just real, whole foods. Cook a meat, a vegetable, and a starch per meal. It’s much cheaper than anything pre-made or partially prepared.
7. Never start more than one treatment, of any kind, within a two to three week period.
If there’s a problem, you need to know what is causing it. By trying one treatment at a time, you’ll know exactly if that one new treatment is causing the reaction (good or bad) rather than stopping everything and starting all over again if there are too many treatments and responses/reactions in your child to track.
8. Get your local insurance-covered pediatrician to rewrite the MAPS (see Find Out More, right) doctor scripts so that your insurance will cover them.
If you must use a specialty doctor that isn’t on your insurance plan, or a specialty lab, find out if your insurance covered physician is willing to rewrite the prescriptions so that your insurance will cover the tests and/or treatments.
9. Don’t keep wasting time and money on any doctor or treatment if you are not seeing results.
Just because a doctor says, “Ninety percent of my kids do well with this,” doesn’t mean your child will be one of that 90%. If you feel like your child is doing poorly with a treatment, don’t be afraid to tell your doctor you want to discontinue the treatment.
10. Find creative ways to pay for your biomedical program
Hold bake sales, use bartering, grants, family gifts, etc. and write it all off on your taxes.
Autism parents relax, reconnect and recharge at the annual National Autism Conference
Warm breezes. Cool, white powdery sand between your toes. The sound of waves and seagulls. Sipping a cool umbrella drink while watching a fiery orange sky as the sun sinks slowly beneath the sea.
This might sound like the ideal vacation, but it’s also exactly what you’ll find at the National Autism Conference (NAC) hosted annually by the National Autism Association (NAA) in sunny Florida.
A Chance To Unwind
The TradeWinds Island Resort on St. Pete Beach near Tampa, Florida has been the site of the conference for two years and rave reviews from attendees have ensured the conference will remain there for the foreseeable future. This year’s event is scheduled for November 8-11 when the average temperature is a mild 80 degrees and where the average guest is smiling and relaxed.
“For us, the National Autism Conference is about providing not just an exceptional educational opportunity, but an affordable, fun and relaxed experience, “ says Wendy Fournier, President of the National Autism Association and mother of an affected child. “Every detail of the event is meticulously planned with the intent to send our attendees home feeling rejuvenated, refreshed and hopeful.”
TradeWinds, upon learning they would host NAC for the first time in 2010, wasted no time in preparing for families affected by autism. Collaborating with the Center for Autism and Related Disabilities (CARD), they sent 150 of their resort staff members for specialized training on autism, developed social stories for guests with autism, safety kits that include door alarms, outlet covers and table corner cushions, and gluten-free menus at all of their food and beverage outlets. Some conference attendees say they plan to make this an annual family vacation enjoying the spacious rooms with refrigerators and microwave ovens. Childcare, which must be arranged in advance, is available for conference attendees bringing their children with autism.
Still other attendees come sans children and view this as a combination conference and retreat. For some, NAC has become an annual reunion of sorts. For long-time attendees, one of the highlights of the event is the presentation of NAA’s BELIEVE Award, now named in memory of NAA co-founder Jo Pike. Jo was a tireless advocate, mom and friend to the autism community who succumbed to cancer in 2010, but whose gentle and loving spirit lives on.
“No matter where you go on the property, you will find someone from the conference and they make you feel like family,” says Catherine Masha of Katy, Texas. “The conference provides free breakfast and lunch items, and free beverages throughout the day, which helps make the weekend that much more affordable. There’s also plenty of time to visit with exhibitors.”
The more leisurely pace of the conference is also conducive to rejuvenation. Sessions begin later in the morning and evening activities encourage networking in a fun, relaxed atmosphere. The highlight of the conference is the Saturday night “Life’s a Beach” dinner and dance, held under the stars on the resort’s beautiful beachfront property. It’s a chance for guests to let loose, relax and dance with their toes in the sand.
Kim Mack Rosenberg, President of the NAA New York Metro Chapter, also views it as a time to renew relationships with people she’s connected with online and to strengthen the national commitment to NAA’s goals.
“As an NAA Chapter President, I look forward to the conference as a chance to connect with the national leadership and fellow chapter leaders to share ideas and brainstorm about ways to make our great organization even better. I often come with friends from the New York Metro area,” says Rosenberg. “It is a chance for us to relax, hang out and catch up – all while learning cutting-edge information. It’s also a chance for me to see friends from all over the U.S. and the world.” Rosenberg adds the conference is often the only time she can catch up with those friends she connects with all year via Facebook and email. “But there’s nothing like being together and this conference is a great opportunity to see old friends and make new connections!”
2012 Keynote Speaker
Eustacia Cutler, mother of Temple Grandin, widely regarded as one of the most influential and successful adults with autism, will talk about the challenges of raising her daughter in the 1950s. Temple’s story is an inspiration to all as, together with the help of her family, she navigated a difficult and sometimes hostile world to overcome many challenges. Dr. Grandin eventually earned her doctoral degree in animal science and she has authored books on living with autism as well as books on how animals think, act and feel. This journey, told from her mother’s perspective, is an inspiring story of unconditional love and perseverance.
Cutler earned a B.A. from Harvard, was a band singer at the Pierre Hotel in New York City, performed and composed for an NYC cabaret, and wrote school lessons for major TV networks. Her research on autism and retardation created the script for two WGBH television documentaries: The Disquieted and The Innocents, a prize winning first. Her 2006 book, A Thorn in My Pocket, describes raising Temple in the Leave-it-to-Beaver world of the 1950s when children with autism were routinely diagnosed as infant schizophrenics and banished to institutions.
“I’ll tell you a bit about raising Temple in the fifties, how she conquered the hurdles of childhood and has gone on to surprise us all,” says Cutler. “I’ll describe some of my own life experiences including the complicated family battle that the diagnosis of infant schizophrenia stirred up. I’ll go into the neurological stumbling blocks of autism, why they take a toll on both child and family, and I’ll cover how current bio-neurological research is pointing us toward insightful possibilities of change.”
All NAC speakers are vetted to provide attendees with the latest advances in all relevant areas, according to Fournier. In addition to a full-day event on special education law (an optional pre-conference workshop), a full range of topics including the latest biomedical treatments, the current state of research, cutting-edge therapies and practical tips for families will be covered. David Berger, MD, FAAP, will also talk about Preconception and Prenatal Strategies for a Healthy Baby with critical information that could help prevent autism.
“There are plenty of educational opportunities without being overwhelming,” says Masha, who says she returns from every conference with new ideas to help her own children and the families she consults with in her supplement business. “You learn things at a conference you can’t really learn in a book, because you listen to many speakers on related topics and begin to put the pieces of the puzzle together for your child based on what is relevant to your situation.”
Understanding of autism, its causes and what confers vulnerability, as well as effective treatment strategies, is still in the “steep part of the learning curve” which makes it all the more important to keep up with the latest research and speak firsthand to scientists, doctors and researchers on the front lines of the epidemic. The relaxed pace, intimate venue and smaller crowds make it easy to connect with parents and presenters alike.
“Viewing the sunset, piña colada in hand, with a group of dedicated autism warrior parents and the specialists who believe in them is a rare, inspirational experience,” says Masha. “I wouldn’t miss it.”
Many children lose the language they have gained as autism takes hold—but that doesn’t mean they don’t want to communicate.
During my son’s toddler and preschool years I read everything I could get my hands on—but it wasn’t bestselling novels or fashion magazines that caught my eye. My afternoons were spent taking notes and making copies of pages to reference later. I squeezed in as much reading as I could while my children napped, spending my nights looking up terms and studies in the medical books I borrowed from the college library down the street. I wasn’t a student registered in any university courses—I was a parent of a child who had started to regress.
Having a typical child turn into a special needs child wasn’t something I’d prepared for or could have predicted. I had a good bit of knowledge about typical childhood development because of my career for nearly a decade as an educator. I knew when my son Ronan started to regress, something was different from what I’d seen in my own classroom although I couldn’t pinpoint exactly what. Sadly, neither could the professionals we were beginning to visit.
Searching For Answers
Thinking I might be able to use some of my old college textbooks wasn’t proving useful. I ended up scanning the bookshelves at a nearby college in my quest for answers, checking out everything from nursing care to psychological phenomena, but nothing fit my son’s issues. Having exhausted the local libraries, I turned to the internet. Soon I was settled at my desk in my own home, searching for answers one webpage at a time.
I continued a general search of childhood diseases, hoping something would pop out at me. I searched rare disorders, medical miracles and more, and became curious about speech and language development. It interested me because Ronan had gained some typical toddler vocabulary but had recently started to lose that speech. He was vocal and excited to say his words—but over time, I was crushed to hear garbled utterances. Ronan eventually fell silent. My quest for answers hastened.
One thing that left me puzzled as Ronan was losing his skills was that through the silence he ached to communicate. The articles I read on severe expressive speech delays scared me. How could children be able to be a part of the world if they couldn’t talk? I’d never heard of children losing their speech in the way Ronan and other children I was reading about were.
The numbers of children being silenced by their regressions gave me new determination to find out more, and quickly. I knew that traumatic brain injury could cause speech issues, but that didn’t apply to my son. Previously typical children were being coupled with intense and disabling issues. Ronan struggled to produce words he’d clearly gained already. It didn’t make sense that he’d lost what I thought was such a simple skill. One of my internet searches brought me to a diagnosis known as apraxia of speech which I researched further. What I discovered was intriguing because I felt that Ronan displayed several of the traits of an apraxic child.
Ronan had just been enrolled in the early intervention program to address some of his delays with bare minimum allotted therapy time. Despite many attempts to increase instruction time, more speech was never granted. I knew that early identification and intense speech therapy with a highly trained speech and language pathologist (SLP) was proving successful for some children. They were able to gain skills allowing them to communicate through speech again. I wanted that for my son, too.
Knowing Ronan would greatly benefit from the intense therapy suggested for apraxic children, I continued to request more school-based speech therapy. We didn’t have the means to go to a therapist privately and I foolishly thought the school system would provide the therapy he needed. I remember bringing up apraxia at Individualized Education Plan (IEP) meetings, requesting that Ronan be screened. The final response after all my attempts was, “When Ronan is six, maybe he’ll have enough speech skill to be properly evaluated, so let’s just wait until then.” Being the new special needs mom that I was, I recorded that information in my IEP binder and made a mental note to ask again for this testing when Ronan turned six.
So much time was wasted waiting for Ronan to “catch up” and for providers to clue in. During those next three years, Ronan received the cookie-cutter speech therapy typical in our area: 30 minutes twice a week with someone not experienced with apraxia. During this time, I discovered that while in kindergarten, not only was his school therapy grossly inadequate, but his entire schooling experience was causing regression and anxiety. With careful consideration, to secure his safety and preserve what little educational base he had, we transferred Ronan to private speech therapy and a private school. Once settled into his new routine and placements, he finally began to make steady progress. The decision to go private with better trained professionals proved positive.
Our private SLP had been working for five years in the speech therapy field when she met Ronan. Erin Maher, who had completed her clinical work in a hospital rehabilitation setting for adults, realized the hospital was not for her. She wanted more than ever to work with children in a private setting. Settling down in the Raleigh area after graduation, Erin’s dream came true. She took a CFY-SLP position at Let’s Talk and has been there ever since.
Erin worked directly under the clinic’s “autism guru” while also gaining knowledge and skills working with the practice’s autism population. Her Clinical Fellowship—although very intense—would prove to be rewarding. Erin got to learn from the best and was immersed further into speech and language development, and how it related to those on the autism spectrum.
After meeting her a few times, I knew Erin was going to be the perfect fit for Ronan. The day we switched over to her services, Erin and our former SLP, and Ronan and I were sitting in the therapy room. Ronan had just started to make gains with some difficult motor planning exercises usually hampered by his low tone. He knew many words and occasionally one would tumble out. But, expressive output continued to be very rare.
On this partciular morning, Ronan had just finished some lip exercises with a lollipop. He was normally very distracted which, in this moment, helped us have a conversation without interruptions, but Ronan had something to say. He leaned forward into our circle and said, “Yum.” It was a deliberate, satisfied response to a tasty treat. Ronan said “Yum” twice more and had us sitting there in awe—and also filled with hope.
Time And Effort
Erin knew she had years of speech therapy ahead to give Ronan a chance to communicate better. Ronan of course had the most work to do. He had to learn how to shape his lips, have enough energy and memory to remember how to make sounds, and then put everything together to produce those sounds and be understood by others.
Ronan worked hard while Erin stayed as determined as ever. What proved to be the biggest component of Ronan’s journey was his sheer determination coupled with Erin’s dedication. After completing a series of exercises, sometimes Ronan would put his head down to rest. The second the next activity was laid out, he would pick his head up, scoot his little body up to the table, and try his hardest. Erin tapped into Ronan’s initiative and got right to work.
Because of the thorough Let’s Talk evaluation, Ronan was granted the highest level of therapy time possible. Erin began to use a speech-language treatment technique called PROMPT (Prompts for Restructuring Oral Muscular Phonetic Targets). PROMPT involves the physical manipulation of a child’s jaw, face and mouth during communicative exchanges to show patients how speech sounds are produced. Ronan had consistently struggled with oral motor skills. He was able to imitate minimal oral motor movements but was not able to produce any sounds in imitation, so this became a focus of his therapy. Initially, Ronan’s attempts to imitate oral motor movement were done using a lollipop in front of a mirror so he could see himself. He was later able to transfer the movements he learned to pure imitation. Eventually the prompting techniques Erin used with these exercises were decreased as Ronan gained sounds.
Ronan was able to imitate more sounds than with other programs while using this tactile cueing system. Erin not only provided intense therapy and genuine care for Ronan, but also taught his school instructors and me. She guided us in providing tactile input for current targeted sounds Ronan was working on in order to draw out his speech gains and skills to other natural settings.
Speech Tools Crucial
Erin’s arsenal of speech tools included straws and bubbles to practice breath output and strengthen Ronan’s ability to control how sound was made. Ronan’s sessions were chock-a-block full, and he thrived thoroughly from it.
He learned how to blow bubbles, blow up a balloon, toot a horn to produce sound, and how to make specific sounds. Word approximations were confirmed by Ronan himself as he used his sign language simultaneously to express a thought. Erin pushed Ronan to the next level, using her technical knowledge and genuine desire to help children succeed.
Ronan trusted Erin and followed through with her demands. He also built confidence in his attempts to always try, try again. I appreciated every bit of encouragement Ronan got and the cheering Erin sent my way, too. Our whole family got involved with Ronan’s therapy: we were constantly amazed at his progress.
Aiding Ronan with his communication has been a big task and has taken years to perfect. It’s something I never imagined having to do.
Thankfully I didn’t give up on searching for answers, and to this day Ronan has a great desire to tell us what he wants or needs. He can now call out to his Daddy with the sweetest sounding “Da da.” Ronan is silent no more! He has yet to regain all of the words he lost and still relies heavily on sign language, but his desire to speak remains very strong. Finding the right people with the right tools for such a monumental task is paying off, one sound and one word at a time.
Addressing digestive issues can lead to improved health for ASD kids… and you.
One can judge the efficacy of a given supplement by the length of time it survives in the market. Parents of children on the autism spectrum are adept at quickly deducing what works for their kids—and if the product does not produce results, it rapidly disappears. Many supplements have come and gone in the dozen or so years since enzymes first hit the autism scene, but enzyme supplements are more popular than ever. The increased use of enzymes as part of dietary programs to support the GI tract indicates they do work, but many parents still do not understand how enzymes help digestion.
The Lactose Factor
Replacing or altering metabolic enzymes is difficult and usually requires genetic manipulation. But digestive enzymes (see Enzymes 101), which make up a very tiny fraction of the body’s enzyme load, are different. Enzymes involved in digestion function outside of cells but within the GI tract to break down food proteins, carbohydrates, starches and triglyceride fats. As such, these enzymes can be replaced or supplemented orally with great effectiveness.
One example of enzyme supplementation is the use of lactase, an enzyme that breaks down the carbohydrate disaccharide lactose to glucose and galactose, which are simple sugars. Many of us become lactose intolerant after the age of 30, and eating dairy products can be a painful experience if lactase is not available to break down lactose. Symptoms include bloating, gas, cramping, and watery stools—but taking a capsule of lactase enzyme can easily allow one to enjoy cheese and ice cream without the unpleasant side effects of lactose intolerance.
Digestion And ASD
So how do enzymes help the digestion of those with autism spectrum disorders? Food intolerance is a condition widely found in those with autism, though it is by no means restricted to autism. The causes of food intolerance are not always known, but in many cases intolerance occurs due to incomplete breakdown of foods during the digestive process. This is most notable with food proteins, which are composed of amino acids.
Think of amino acids as letters, and proteins as words. Just as specific sequences of letters form specific words, specific sequences of amino acids produce different proteins. If you change the “letter,” you change the meaning of the “word.” Digestion is supposed to completely break down proteins to amino acids. However, some proteins are only partially broken down while in the small intestine. The small protein fragments produced from incomplete digestion are called peptides. Peptide production during digestion is actually quite normal, and eventually even peptides are broken down completely way downstream in the gut.
However, in some individuals these peptides can produce biological effects, some of which are helpful, while others are problematic. With certain individuals, the effects are observed in both digestive functions and behavioral responses. Loose stools or constipation may occur, and certain behaviors may be exhibited—for example, lack of attention, hyperactivity, or sleep issues. If a pattern of eating certain foods is associated with certain repeatable behaviors, then it may be possible to address these problems through dietary intervention. By understanding how certain foods are processed in the gut during digestion we can then address the underlying problems of food intolerance with the use of appropriate enzyme supplements.
Changing The Digestive Landscape
The problem for those with food intolerance is that the bulk of protein and carbohydrate digestion is in the same part of the gut where nutrient absorption occurs. Peptides and disaccharides are formed, absorbed, and may enter the systemic circulation through active or passive transport mechanisms found in the gut wall. If gut inflammation is present, these compounds can enter the circulation more easily. Once in the bloodstream, these compounds can produce effects in other parts of the body.
Taking supplemental enzymes can greatly change the digestive landscape—however, the enzymes taken orally must be from non-pancreatic sources, as these are not stable to stomach acid. Plant-based enzymes derived from fungal sources are the most common over-the-counter enzyme supplements and are active even in stomach acid. When taken with a meal, the enzymes start the breakdown of foods while the food is still in the stomach. Any food eaten will remain in the stomach from 90 to 180 minutes depending on the type and quantity of food. More importantly, foods and their nutrients are not absorbed from the stomach. This means that a food peptide can be tolerated while it is in the stomach but once it moves into the small intestine the peptide can be absorbed and become active. Therefore, one has a window of opportunity to address a potential food infraction before the infraction produces a resultant behavioral response.
Wheat and dairy proteins can be safely broken down while those foods are still in the stomach using the correct combination of proteolytic enzymes. Sufficient enzyme must be dosed such that the enzymes have time to work on the food before the stomach empties. Contrary to popular belief, very little food breakdown occurs in the stomach. Pepsin is the major enzyme in the stomach and its primary purpose is to activate pancreatic enzymes once the food mass empties into the duodenum. So, by adding additional acid-stable enzymes (by oral administration) to the food mass in the stomach, we jump-start the digestive process.
Enzymes in Autism Treatment
In the case of ingesting a food that is not tolerated, taking enzymes specific for the breakdown of that food may alleviate the intolerance. This function has received quite a bit of notice in the research community. Several research institutions have presented protease enzyme combinations as possible treatments for severe food intolerance such as celiac disease. Using protease enzymes that specifically address the structure of gliadin, a gluten peptide, researchers have demonstrated that gliadin production from gluten is inhibited. Since gliadin is the culprit that causes gut damage and immune problems in those with celiac disease, the effects of eating wheat are negated when these enzymes are used appropriately. While FDA approval is quite some time away, it is still gratifying to see the traditional research community emphasize the importance of plant-based enzymes in dietary problems.
As stated earlier, the great majority of enzyme supplements are derived from fungal sources. Aspergillus niger, grown under controlled conditions, is the primary source of enzymes. Varying the growth conditions of the fungi produces different enzymes. Japan is the primary source of enzyme production. The combination of art and science used for centuries in Japanese enzyme production results in purified enzyme proteins without any fungal contamination. Enzymes are most likely the safest dietary supplement available. Studies conducted with humans taking large amounts (up to 10 grams or more) of various enzymes over a period of time showed no ill effects. Enzymes are proteins and any protein has the potential to be allergenic, so one should insure that no sensitivity to enzyme protein exists prior to taking standard doses.
Optimizing The Dose
Dosing of enzyme products is based on the amount of food eaten, not body weight or age. There are many factors to consider for determining optimal dosing: diet, gut health, environment, etc. Since the safety factor for enzyme dosing is so large, we recommend experimenting with different dosing. You can use the enzyme supplier’s dosing recommendations as a guideline but keep in mind that individuals are different. It is best to start with low amounts and work up to a dose that produces the desired result.
One other indication that enzymes are providing help in the autism community is the proliferation of supplement companies now offering enzyme products. Unfortunately, many of these companies have no real experience or expertise in the use of enzymes. Anybody can contact an enzyme manufacturer and become a supplier of enzyme products. However, that does not guarantee a product that will produce results.
Base your choice of enzyme product on the knowledge and expertise shown by the company. Look for a company with actual hands-on experience in characterizing and purifying enzymes. Ideally, the staff should include a doctoral-level scientist with actual laboratory research experience and publications in enzyme biochemistry. They should do their own formulation and relay the information to a reputable, GMP-compliant enzyme manufacturer. Different enzyme combinations can produce very different results so an understanding of how each enzyme works is essential to producing an effective product. Finally, the company should be responsive to any questions you may have concerning their products. A company should want to build a relationship with its customer so providing answers is paramount to establishing trust.
Family camping provides memorable opportunities when autism is a factor
Planning a vacation can be challenging for families with a child on the autism spectrum. Instead of the usual hotel-based family getaway, how about a trip to the great outdoors next time? There are a variety of reasons why camping can be a great option for families who have a loved one with autism. Your trip can be customized based on your family’s desired levels of activity and stimulation—from challenging hiking trails to sitting around the campfire telling ghost stories and making s’mores, there’s something for everyone.
There are many options when deciding on where to camp—with over 10,000 campgrounds in North America, finding a location that fits your needs won’t be too difficult. Camping can be fun on any budget, and it’s been my experience that the majority of campers are family-oriented people who appreciate the simple things in life. My family began camping several years ago, and we’ve found it to be a rewarding alternative to more traditional vacations. The ability to tailor the travel agenda gives us a lot of freedom to meet the needs of our son on the spectrum while making some wonderful family memories in the process.
You’ll Love It When A Plan Comes Together…
Camping does require a bit more forethought than does the typical family vacation. Prime campsites at popular state and national parks are usually available one year in advance, and often fill very early, especially for weekend and holiday dates. Plan a trip for several weekdays and you will find it much easier to reserve a site. Private campgrounds and national chains such as Jellystone and KOA tend to have campsites available on shorter notice, except on popular holiday weekends such as Memorial Day, Independence Day, and Labor Day.
If you’re staying in a tent, be sure to first practice setting up your equipment in your back yard before your trip to be sure everything works and all the parts are included. And as much as I love the great outdoors and communing with nature, I draw the line when it comes to sleeping on the cold, hard (and perhaps, ant infested) ground. I highly recommend purchasing inflatable air mattresses, which are available at most Target and Walmart Stores (as an added bonus, they can double as guest beds the next time your in-laws visit).
Planning and packing meals for the trip can be an arduous task to process, but if you’re the parent of a child with autism this will likely be old hat for you. Prepare as much as you can ahead of time—sandwiches and meals like chili can be made in advance (be sure to use critter-proof containers for storage). Be sure to bring enough coolers (ice is generally available at most campgrounds, including state parks). It’s also a good idea to do a little research to determine where the nearest grocery store is located.
Camping in an RV (see RV World below) with a cooktop or microwave provides greater options for meal preparation especially if you don’t savor the idea of living on grilled meats and roasted weenies on a stick for the duration of your trip (campsites usually include a fire ring and grill.)
Even if you’re renting an RV or a cabin at a resort-style campground, you will have to bring your own bedding, towels, and toiletries, as well as plates, utensils, cups, and garbage bags. Other must-haves include flashlights, insect repellent, sunscreen, batteries, ziplock bags and rain ponchos. Making a list ahead of time and doing a practice run in the back yard can spare you much stress and grief.
Opting to camp as a family provides a plethora of travel possibilities. Virtually every county in the US has some type of camping facility, from the Grand Canyon to the Great Lakes to the Smokey Mountains. Some of our favorite camping locations include:
Eureka, Missouri (St. Louis area)
Literally across the road from Six Flags, this campground includes a swimming pool, video game center, volleyball, shuffleboard, and much more. Besides spending a day or two at Six Flags, our vacation included a trip to the St. Louis Arch, Grant’s Farm, and the Wabash Frisco and Pacific Railroad Association.
Check it out www.eurekajellystone.com
Set in a scenic, deep valley that resembles the Swiss Alps, this county-run facility features a creek, picnic areas, playground and sports field. The first time we camped at Swiss Valley we met a wonderful group of campers, including a family with a son on the spectrum. We kept in touch for years and camped with them on several occasions.
When camping at Swiss Valley, we enjoy spending time at nearby Eagle Point Park. Situated on a bluff overlooking the Mississippi River and boasting views of three states (Iowa, Illinois, and Wisconsin), the park’s facilities include the Riverfront Pavilion, Shiras Memorial Pavilion, Log Cabin Pavilion, Terrace Room, Veranda Rooms, Indian Room, and the Bridge Complex. Other amenities include the Wading Pool, Rock Garden and Fish Pond, tennis courts and horseshoe courts.
Check it out www.mycountyparks.com/county/Dubuque/Park/Swiss-Valley-Campground.aspx
P.J. Hoffmaster State Park
Most people I know don’t have bathrooms as nice as the ones at this park, which include modern, private tiled showers. Along with gorgeous beaches, sand dunes, ten miles of hiking trails and close proximity to the town of Muskegon and the Michigan Adventure Amusement Park, you can’t beat this place for a few days of R & R.
Check it out www.michigandnr.com/parksandtrails
Wisconsin Dells, Wisconsin
This campground was made for families, with its own in-house waterpark (what else would you expect in the Dells?), movies, hayrides, mini golf, free Wi-Fi and more. Cabins are also available. Besides the world-famous water parks, some great places to check out while in the Dells are the Wisconsin Deer Park and Lost Canyon.
Check it out www.dellsjellystone.com
Boca Grande, Florida
Not for the novice camper, this State Park is actually a gorgeous tropical island accessible only by charter boat, private boat, or ferry. Cayo Costa lies just north of Captiva and Sanibel Islands, on the Gulf of Mexico. The island’s nine miles of soft, white sand beach are among the finest in the world for shelling. Cayo Costa offers a variety of wild life, including dolphins, manatee, snakes, gators, and wild hogs! Vehicles are not permitted on the island, but there is a tram to help transport your gear to your site and also some bicycles available for rent. Camping is in primitive cabins or tents. We spent just one night on the island, and plan to return in the future. If you’ve ever wanted to escape to a deserted tropical island for a few days, this is the place for you.
Check it out www.floridastateparks.org/cayocosta/193140
If you’re looking to meet nice, friendly, family-oriented people who tend to not sweat the small stuff, camping may be the right vacation for you. Less restrictive than a hotel room, you have trails to explore, campfires to enjoy, and the peace and calm of the great outdoors without breaking the bank. Our kids always make new friends on camping trips, often staying in touch via email or social media long after the trip ends.
After learning the ropes your first few times out, it won’t be a matter of whether you will go camping again, but rather where your next family adventure will be. You’ll be creating life-long memories in an environment where everyone is welcome and accepted, while making new friends (perhaps even families with kids on the spectrum)… and that is the best part of camping.