An alternative to autism?
Lack of certainty about the diagnosis leads many families to look outside mainstream medicine
Roni Jacobson • January 29, 2013
When Shannon Des Roches Rosa’s son Leo was diagnosed with autism in 2003, her world turned upside down. All of her hopes and expectations for their lives disappeared in an instant, and Shannon, a mother of three in California, became intensely depressed. So when she discovered alternative therapies claiming to offer a cure for her son’s disorder, she leapt at them.
Shannon’s reaction is typical of many parents dealing with an autism diagnosis. Uncertain about their child’s future, they turn to therapies that promise change but lack scientific support. These alternative treatments, known as complementary and alternative medicine (CAM), include changes in diet, dietary supplements, and therapies aimed at reducing toxins or correcting presumed immune deficiencies. Doctors are torn on how to counsel these parents – some are dismissive towards families considering alternative treatments, but others are more sympathetic.
“They are looking for something that is going to help them establish some kind of relationship with their child, and it is a very real need on their part,” says Cynthia Riccio, an educational psychologist at Texas A&M University. “It makes them a very vulnerable population. If somebody says ‘spend $2,000 and we will fix your child,’ they will do it.”
Autism consists of a range of disorders that vary in symptoms and severity, but all cases share impairments in communication skills, social development, and other aspects of behavior. Approximately one in every 110 children in the U.S. is diagnosed with an autism spectrum disorder. There is evidence that both genetic and environmental factors contribute to risk for autism, but a comprehensive explanation for its origin has so far eluded the medical community.
Since researchers have yet to pinpoint a definitive cause for autism, there are few effective options for treatment. Most current approaches, such as applied behavior analysis, focus on easing harmful and disruptive behaviors. These interventions can manage the symptoms of autism and enhance the child’s development, but none are cures.
“When we talk about what we have empirical support for it’s very limited, and none of them are quick-fixes,” Riccio says.
Applied behavior analysis for a child with severe autism, for example, can take up to 40 hours a week for 20 weeks, a commitment that is both time and labor intensive. The lack of treatment options leads frustrated parents to look elsewhere, often outside the medical mainstream. According to a recent paper in Complementary Theories in Clinical Practice, between 32 and 74 percent of parents of children with autism report trying CAM, often experimenting with multiple therapies at the same time. The wide range in percentages is partly due to many parent’s hesitation to admit their trials with CAM to their doctors.
There are several different types of alternative medicines, each tied to a proposed mechanism for the underlying cause of autism. Nutritional supplements such as vitamin C and vitamin B6 are popular alternative treatments that target supposed abnormalities the production and release of neurotransmitters like dopamine and serotonin. Parents also often put their children on gluten-free casein-free (GFCF) diets, based on the claim that chemicals found in products containing those substances can cause social withdrawal and other hallmarks of autism.
While treatments like these are largely benign, says Riccio, evidence for their effectiveness is mostly based on anecdotal case studies. Merryl Schechtman, a behavioral pediatrician at Albert Einstein College of Medicine in New York City, says empirical support for alternative treatments is hard to come by.
“In the absence of large, blinded, randomized, and repeated trials, it is difficult to establish that CAM works,” she wrote in an email. “In small studies there may be large, demonstrable placebo effects which caretakers and researchers mistake as evidence for improvement.”
Compared to mainstream practitioners, CAM vendors offer a tidy explanation for the causes of autism, and many claim that by following their regimens, children with autism will experience transformational improvements.
“Some of the people who provide alternative and complementary medicines do not believe in the scientific method, they believe in hucksterism,” says Vidya Gupta, a behavioral pediatrician in New Jersey. “They are very good speakers and presenters, and although most of it is pseudo-science, some parents get lured to it.”
In a 2006 study, 26 percent of parents reported that they believed there was a specific cause for their child’s autism; 46 percent responded ‘maybe.’ When doctors refuse to speak with parents about these alternative explanations, parents lose confidence in their doctors’ knowledge of autism research, says John Harrington, a pediatrician at Children’s Hospital of the King’s Daughters in Virginia and one of the paper’s authors. The parents who had tried the most alternative therapies also reported having the least confidence in their doctor’s abilities.
The rise of the internet has increasingly allowed parents to research autism from home, giving them a feeling of empowerment and control over their child’s illness. But it can also expose them to a barrage of dubious claims about autism treatments, researchers say.
“In the age of Google, people feel more confident and self-sufficient in managing their children,” Dr. Gupta says. “They don’t want to sit helplessly, and that is being exploited by some of these vendors of CAM.”
Though many CAM treatments do not pose serious risk to the child, some, such as chelation therapy, can be lethal. Chelation therapy is based on the hypothesis that children with autism have excessive mercury and heavy metals in their system that can be eliminated using detoxification agents. If the child does not actually have mercury poisoning, exposing him or her to chelation can cause harm. Between 2003 and 2005, there were three deaths in the U.S. due to complications arising from chelation therapy, according to a 2010 study in the journal Neurotheraputics.
Alternative therapies can adversely affect more than children’s health. Many are expensive and time-consuming. One – hyperbaric oxygen therapy – lasts about 40 weeks and costs between $1600 and $2400. Additionally, families who try CAM often report strain on the marriage and a shift of resources and attention away from other siblings.
Even so, parents continue to try CAM and doctors struggle to help them figure out the best course of action for their family.
“If you have a child who is self-abusive, who you can’t communicate with at all, who you can’t leave alone, then you are going to be a whole lot more desperate and willing to ignore the risks of some of the more dangerous treatments,” Riccio says.
The American Academy of Pediatrics suggests that in the absence of direct harm, doctors should not simply insist that parents stop alternative treatments, despite the lack of evidence for their effectiveness. Instead it recommends speaking candidly about the research behind alternative therapies and avoiding insensitive and defensive reactions to parent’s inquiries.
“If I have ten patients and they all say they want to try it and I stonewall them, they are just going to go to somebody who approves it,” Dr. Gupta says. He adds that if parents are going to try CAM, the best thing doctors can do is guide them through the process and provide them with the tools to think critically about the effects of CAM. “Everybody reaches their level of acceptance at their own pace, and as a physician I cannot push it.”
For Shannon, sitting idle was not an option after Leo was diagnosed with autism. “I’m a person of action,” she says. So she started a now popular blog called Squidalicious, which chronicles her day-to-day experiences raising a child with autism. Still reeling from her devastation at Leo’s diagnosis, she found a book on Amazon that described the alternative therapy Defeat Autism Now, or DAN!, and eagerly enrolled her son. Even though she didn’t see substantial changes, she kept at it.
At the time, Shannon and Leo were seeing a pediatrician who was strongly opposed to alternative therapies, and he eventually dismissed the Des Roches Rosas from his practice. Shannon wrote letters explaining her approach to other pediatricians in her area, and found another that was willing to take them on. Their new pediatrician wasn’t enthusiastic about CAM either, but she preferred working with parents who choose alternative therapies rather than turning them away, and openly discussed the merits of the treatments.
A short while later, after talking with her pediatrician and other family members, and years of trying unconventional treatments without results, Shannon gradually stopped casting around for alternative therapies.
“The thing about all these supplements is they taste awful and ruin your day, you have to regiment everything around them, especially if you are following the special diets that go with them,” Shannon says. In the end, “the only thing that they did was cost us money.”
When she took her son off the supplements and the GFCF diet about seven years ago, Shannon observed that life became more manageable and Leo seemed happier. She has since devoted her energy to blogging and editing Thinking Person’s Guide to Autism – a resource that aims to provide clear and evidence-based information on autism for parents unfamiliar with the diagnosis.*
“I used to be so worried and distraught thinking he was limited, and now I just realize that he is the best Leo that he is going to be,” she says. “I guess you could say I moved from conditioned pessimism to informed optimism.”
*Correction, January 29, 2013:
Originally, this article failed to mention that Shannon Des Roches Rosa took her son off supplements and the GFCF diet seven years ago. This has been changed to clarify the timeline of events and reflect Shannon Des Roches Rosa’s work at Thinking Person’s Guide to Autism.
Also, given the nature of this site and its provenance, I’d like to recommend the following link for people who are considering writing about autism, autistic people, or autism science: http://www.emilywillinghamphd.com/2012/08/writing-about-autism-science-10-things.html
Number one on that list: “Interview an autistic person for insight whenever possible. If you need suggestions for leads, feel free to contact me. If you were writing a piece about any other human condition, would you talk only to parents or relatives of people with that condition if the people who have it could communicate for themselves?”
Thank you for featuring Leo’s story. I’d like to add a few clarifications:
I parted ways with alternative autism approaches almost seven years ago, and have not just stopped them but become an outspoken advocate about evidence-based approaches as both a columnist at BlogHer.com and as senior editor of Thinking Person’s Guide to Autism. Please see my post Identifying and Avoiding Autism Cults for my current opinion on autism CAM: http://www.thinkingautismguide.com/2010/06/identifying-and-avoiding-autism-cults.html
I realize that diets and supplements can be helpful for some children with autism who have co-morbid conditions, and that improvement of those conditions may lead to less discomfort and thus fewer distress-based behaviors. However, this is neither curing not alleviating autism.
And just in case there’s any confusion, I love and accept my son Leo for who he is and think he is 100% awesome.
I am surprised to see Shannon’s name mentioned without reference to the incredible work she has done as co-editor of THINKING PERSON’S GUIDE TO AUTISM, the blog and the book, for helping families embrace the iPad for helping children with autism learning and play, and for encouraging dialog between parent advocates and self advocates. It’ almost like writing about Barack Obama’s community organizer days, and not mentioning what he is doing today.
This was one of the worst and most misguided articles I have ever seen on alternative autism treatments, but is a pretty typical example of what happens when one unfamiliar with autism does a cursory investigation and skims off little tidbits of misinformation. Take it from someone who has been “in the trenches” with autism for nearly two decades, this article is misleading, mistaken, and full of misinformation.
First of all Autism is now 1 in every 88 children according to the CDCs own accounting, but even that is five years old now and no updated numbers have been released since 2008, counting eight year olds born in the year 2000. It is believed the numbers are much worse than that now, but no one seems to be in a hurry to know for sure, except parents.
Only one child has ever died from chelation and that was not from the protocol but was doctor’s error when the child was administered the wrong chelating agent. Instead of the standard protocol for heavy metal removal pushed by the CDC itself for the removal of toxic levels of lead or mercury and noted as safe, this child was administered a chelating agent for adult heart patients. Apparently the bottles were mixed up, labeled nearly identical and that was the cause of the child’s death. The CDC approves, promotes, and recommends chelation for heavy metal toxicity in all cases except apparently when the toxic child is also autistic.
ABA was included and it is certainly not a CAM. It has been recommended by the surgeon general of the U.S. for decades now and has scientific, double blind, placebo controlled studies to back it up. And I have never heard of ABA lasting only 20 weeks. It can consist of 20 to 40 hours a week, but typically lasts for many years and yes it is very expensive. Costs can range from 20,000 to 60,000 plus per year. Certified providers should have a degree in ABA from a University and parents should never pay or contract with providers who are not a certified ABA consultant. There are thousands of children that have been able to reach the “indistinguishable from their peers” level with ABA alone. ABA should hae never been included in an article about alternative therapies.
I can assure you that parents are not looking for something that is going to help us establish a relationship with our children, we are looking for ways to help our kids learn, be healthier, treat co-morbid conditions that a prevalent in these children and yes we are seeking a cure, or a level of change that will help them to function in mainstream society. I am always amazed that the path of parents treating their children is often the target of ridicule and scorn, but none of that is directed at parents who simply continue to take their children to a pediatrician that offers them nothing, that ignores medical issues in their child that would be rigorously investigated in a typical child…as if having autism dooms you to a life of pain, inability to eat well, immune system problems, gut issues, seizures, etc. etc. etc. the list goes on and most allopathic doctors could care less. Or, the worst of all, allows those allopathic physicians to give their child hard core drugs, including anti-psychotics, neuroleptics, or combinations of these drugs that turn their children into walking zombies, develop weight problems, and endanger the development of their young brains and hearts. These drugs are being prescribed to autistic children “off-label” as they have never been tested for autism they are simply winging it, looking for a way to apply a chemical straight jacket to their child with no real knowledge of long term effects. Yet you and others are more concerned about whether I put my child on a Gluten Free/Casein Free diet, buy only organic foods, or give my child one-on-one therapy with a trained graduate level behavioral professional. The mother damaging her child with drugs and ignoring the physical co-morbid conditions is praised and up for “Mother of the year” while us parents doing research, engaging others outside of standard allopathic care givers are seen as the “whackos”, being misled, disillusioned or lied to by charlatans out to take us for all we have.
But again, you are severely misinformed. I have never engaged, hired, sent money to alternative providers, including DAN which you mistakenly inferred that people “join” or pay. DAN was a sub-organization of the ARI or Autism Research Institute out of San Diego, CA. It was founded and managed by Professor Bernard Rimland, often referred to as the “Father of Autism”. You know, the guy who single handedly debunked the refridgerator theory of Autism, saving families from the quack but accepted theory of the day by all of modern medicine that ambitious and college educated mothers were somehow causing autism in their children because their ambition was proof in itself that they “didn’t really want or love their children” hence causing autism because the babies simply sensed it from their mothers. ARI is an organization which no one has to pay to join or benefit. They freely offer more information that you could possibly take in on their website absolutely free. They are forming new databases all the time where you can compare your child’s symptoms and impairments to others and what worked for them, hopefully helping you to not waste time on those least likely to work for you. They do not and have never claimed they can “cure” your child, but they also have thousands of eye-witness reports from parents that did make a huge difference in their child’s functioning level. There are medical doctors who put themselves out there as DAN practitioners, that have studied, met in think tanks with other DAN doctors and are truly addressing the issues of our children. Doctors that care that our children may have immune system problems, care that our children have more than their share of gut issues, food or eating disorders, seizures, and they treat our children and the parents like full cognizant and thinking human beings. Oh the horror of it all. So, just like you would pay your pediatrician or general practitioner, we pay our doctors, who happen to recognize and work within the DAN protocol or pro-active theory of treatments for our precious children. Most of our DAN doctors are board certified physicians, just like all the one-sided ones you interviewed for you slanted article. However, they are the ones to be celebrated for caring, pursuing, seeking answers, not for ignoring or drugging our kids to the moon. ARI offers free access to their website, including research articles, protocols, pitfalls learned and shared by other parents, and you can even request a personal mentor to be your advisor, sounding board, shoulder to cry on, someone that understands you and what you are going through, which is far more than can be said of the doctors quoted in your article or the ones that would dismiss a patient because the parents gave a darn enough to do their own research. Doctors have far too many patients to be experts in every disease and disorder, but parents just have their children and can often be far more informed about what is happening in the Autism world both in and outside mainstream circles. I once had a pediatrician tell me, “ABA, never heard of it, if it was anything legitimate I would have heard of it.” This is the level of expertise we get from most “mainstream” physicians.
So, you gave a single one-sided parent story of a Shannon and Leo, who she had no visible effect on her son despite trying many different alternative therapies. You insinuated that these therapies can be a strain on marriages as if having a severely autistic child isn’t already the greatest strain of all. But, you of course did not give both sides. Of course because you believe success is impossible, and indeed I have been told, because of our success to the Nth degree that “my daughter must have been misdiagnosed” or the newest spin by mainstream medicine and the media trumpet that works for them that some kids can now just “outgrow” autism or have a “spontaneous recovery.” Odd since not everyone has gotten the message and we still see the standard belief that there is no “cure”, no “recovery”, and that autism is a lifelong and debilitating disorder for which there is no one answer.
But my story is very different from Shannon’s. I watched my child regress into autism and so I was very aware that she was not “born with it”. And with no others anywhere in our family background, genetics just did not make sense for us. So my logic was fairly simple, what is broken, to some degree can be fixed and I set out to do just that. My child was severe on the spectrum as most girls are. I was told she was severely brain damaged and mentally retarded, that she would probably never speak and that I should set up a life plan for her so that she would be cared for when I was gone. But the so-called “experts” predicted that around puberty my daughter’s violent outbursts would become too much for me to handle as a single Mom and quite petite and that she would probably have to be institutionalized at that point. I was told to “take her home and love her until you just can’t care for her anymore.”
I started with what I thought was the simplest thing, the GF/CF diet. I read Karyn Seroussi’s book and realized that her story was ours, almost identical in every single way. So after finishing the book in only 3 days I stripped my house of every single molecule of gluten and casein (dairy). I started researching nutrition, substitutes, misleading names used for these supplements and boy was it a steep learning curve. But I am a researcher, it was a strong point in college when getting my degree, and later in several jobs where it was much needed. And what happened? I often tell people, including families I have mentored since our journey that my daughter was what I call a “nuclear reactor”. She reacted as if I had just taken her off of heroin. These were some very scary withdrawals which took almost a week to get through, including 3 days where it was difficult to even wake her to ensure she had adequate liquids and food. It was a very scary time for me and my parents who were supportive and helping make this happen. My Mom and I had decided that if we had to ask each other if the other noticed a difference we would quit as we knew the risk of trying to assign or find benefit because we wanted to believe. Instead we approached it that ‘it absolutely was not going to work’ but that we couldn’t know unless we did it, and we did it absolutely perfectly, without a chance of gluten or casein accidently getting into her diet, and that if the reaction wasn’t dramatic we would quit. Lucky for us, it was very dramatic. After severe withdrawals for two days and a near coma like state for three more, she started to slowly come out of it. I had no pediatrician support, mine was pretty much like those quoted in this article, worthless and even condescending, so I was forced to go it alone. But as she started to come back to us in that very long week, it was obvious that we didn’t have to ask if “you notice any difference.” She was amazingly “with it.” And while that may sound vague, nothing about it was vague. 10 days into the diet she spoke the first words she had spoken in almost 2 years. She was no longer tantruming several times a day. She stopped biting herself in fits of anger and frustration, quit pulling her own hair out, quit hitting and kicking me, quit banging her head on the floor, the coffee table, even concrete sidewalks. She was calm, even-keeled, aware, loving. At 10 days into the diet she POINTED and said “our car”. I dropped to my knees literally sobbing with happiness and realized she was patting me on the back. In a matter of minutes I got a “request for joint attention”, words, and empathy. She was four years old at this point and while I was now optimistic, that was a lot of years to make up and not much time to do it. I immediately initiated an ABA program, again in my own resourceful way. The cost for a year was more than a made in wages, so I hired a certified consultant and conned and begged friends, churches, and other community members to get involved, get trained, and help us run a program. I had to get trained myself as the consultant could only fly to Oregon from Florida a few time a year, the rest I had to handle through correspondence and tweaking the program myself. On the diet she was soaring and with the ABA program she was mastering an average of 750 targets a week. We couldn’t even keep up with her. By the time she started Kindergarten, she was placed in a regular classroom but with an aide. By first grade it was a classroom aide that was there for my daughter but worked for the entire classroom. By 2nd grade all aides were gone but they would do pullouts for speech therapy and social work. She would continue to struggle with reading comprehension but excelled in math and spelling.
Today she is a Freshman in High School and no longer goes to the resource room for any of her classes. She is 100% mainstreamed and making Straight A’s. She plays 7 different musical instruments and writes her own music. At the end of her 8th grade year she took a huge step and tried out for Cheerleading. She was so amazing that she made the Varsity High School Squad as only a Freshman and had an amazing football season. She is loved by her team mates, her class mates and her teachers. She is the happiest child I have ever met in my life. She talks about her Autism often, how it used to feel, and how she feels now. The only “institution” we talk about now is college, which I fear we cannot afford as I spent all my money getting her to where she is now, alone, with medical support nor insurance coverage.
I once challenged the diet and she started eating gluten and dairy again. Nothing seemed to happen and I was shocked and confused. But two weeks into the diet change she got angry, screamed at me a blood curdling scream and then bit her own arm in anger, breaking the skin. We immediately went back on the diet and have never stopped. Another family stopped the diet when their son was a teenager and 6 months later he was diagnosed with Schizophrenia. Any parent that witnessed what I did, and did not continue this “alternative” treatment should be found negligent. I also know it doesn’t work for everyone, some not as dramatically as others, and unfortunately some not at all. I don’t claim to understand why, I just know there is no doubt it works for some, and it works for us. I have since mentored approximately 20 other families and a few have had results as amazing or even more than we have.
There is no empirical scientific data because they refuse to do it, say it’s too hard, or the one study of the diet I have read was in my view designed to fail. Parents were not given guidance, it was too short a time period, and there were no checks and balances to assure any one of the subjects followed the diet at all, let alone religiously. The study in the end was neutral, saying they showed neither a benefit nor detriment, yet a majority of the participants claimed benefit and stated they would continue to use the diet.
But, I can tell you this. Parents will continue to try alternative treatments, will educate themselves and become experts in the science of autism, of dietary interventions, ABA, supplements, chelation, HBOT, we will research IDEA, FAPE, teaching methods for autism that are successful and what our rights are and those of our children because standard allopathic physicians have nothing to offer us and like the authors of this article, they are misinformed, condescending, suffering from the typical God-like complex so prevalent in medicine today. They treat us like idiots and our children, well in some cases not at all. Then try to tell us that those that seriously look at our children and care for their well-being are charlatans. You can understand why we see it the other way around. Educators set the bar low and at every opportunity simply state “well they do have Autism” like that is not just an excuse but justification for them not to teach our children and set the bar high. They learn in college that every child can learn and if not it is “dysteachery” but once in the real world they blame parents and the child himself for all failure. In the medical field parent’s eye witness testimony about what happened to our children is not just ignored but ridiculed. Our childrens’ very real medical problems are also ignored. Their behaviors are drugged no matter the long term dangers and effects the drugs may bring about. We are even sometimes told we don’t love our children and cannot accept them for what they are.
This is why we do what we do. Because we do love our children and we have realized that we are the only ones that do. I am the only one that would sacrifice my own life for my child, I sure as hell no better than the good doctor here about my child and what is best for her. I am a college graduate, a research expert, and I have never ever been called gullible or easily swayed, quite the opposite in fact. But I have witnessed first-hand the mistreatment, the scorn, the lack of compassion and empathy by those that turn around and accuse us of being misguided. If you refuse to hear me I will seek out listeners. If you refuse to treat my child and her physical condition I will seek out practitioners who will. If you refuse to adequately educate my child I will seek out those who will or I will do it myself. We are not misguided, we are not ignorant, mystics, or whackos. We are intelligent, educated, and dedicated parents who love our children more than our own lives and will do anything to assure them the best chance at a future, a decent life, happiness, a career, anything outside of living on the streets or institutionalization where they will be drugged, mistreated, molested, or worse. This is what you offer us and why we seek outside of your narrow wisdom. You are not just misguided but delusional. You can’t give us answers but begrudge us seeking it elsewhere. You still think you can tell us whether to continue alternative treatments or not.
Your entire story got everything completely wrong. Not just facts but your reasoning and theories are dead wrong as well. You have assumed to understand the motivation of parents but you come from a biased belief that there is nothing that can be done and then when it is and not by you, you come up with insulting excuses such as spontaneous remissions or obvious misdiagnosis. You are wrong and now you have mislead others that might be helped.
I read Shannon’s blog regularly and also her ‘parenting children with disabilities’ entries on ….blogHer.com. She writes about totally cautioning parents against falling prey to these anecdotal claims of success of these alternative therapies. She has published a book…The Thinking Person’s Guide To Autism….which she says is the book she wished she had when they got the Autism diagnosis. It is all science based and contains tons of info from MDs, scientists, as well as autistics themselves. There is also a section on where to go for help, resources and school and education issues. Should be in every school and home.
Autism is genetic.It can’t be cured.It changes over time and varies by person so it may appear cured. I am autistic. I have a degree from Oxford. Yet at primary school I displayed classic Kanner autism symptoms. There is autism in four generations of my family but I married an Aspie and had Aspiekids. I don’t feel debilitated by my IQ of 150 but it does depress me that people view me as an oddity when I am the 1%. Talking of which I love milk thanks. I like to eat and drink things I like and am not an experiment in progress but someone created for a purpose just like you.Thanks.
Isn’t society always telling us we need to be bigger and better, new tits, new teeth, better job? What if this is me, fearfully and wonderfully made? Just as nature intended.What if even your nonverbal child (who I understand may not be as lucky as me just as I may not be as lucky as you) hears your disappointment? Then go to the Downs parents and tell them to fix their kids. Into each life some rain must fall.But what if you need it to make you grow?
@Laura Shumaker – Thanks for bringing this to my attention, the post has been updated to mention Thinking Person’s Guide.
@Emily – Thanks for your comment. I saw this article as more about how doctors counsel parents coming to terms with an autism diagnosis. Since the children in these instances are often nonverbal or on the more severe end of the spectrum I didn’t think to interview someone with autism. You make a very good point, however, and I’ll definitely contact you for help finding sources in future articles as needed.
I am sorry that Leo did not improve but my son really responded to “alternative”/ or as I like to say common sense interventions: super healthy, no processed food diet, Vit D, E and fish oil.
Parents are not idiots, this is not voodoo medicine. My choices were placing my child on anti-psyhoctics, as my pediatrician suggested – which is NOT considered alternative and should be – or going a more holistic route- while doctors discouraged me all along the way.
I am so glad I did not listen to them.
Kendra, I just want to say that reading you comment has made my day! My son was diagnosed with high functioning autism at aged 4. I too am devoted to making his life as happy and for-filling as possible. I live in the UK so am not really able to choose a doctor but have received the same advice as you. It is heartbreaking to be told to try and appreciate your son as much as possible while you can… off you go then… next? I swear by the gluten free casein free diet. Within a week of starting it my son said “mum look at me” while showing of his running and jumping skills… I was stunned. After 6 weeks he was using the toilet were previously he had soiled himself and decorated my walls with it! My next mission was chelation but living in the UK I could not find a DAN doctor… and as the above article suggests, I didn’t want to be ripped off or trust my son to someone not qualified. So I kept researching and eventually came across the information that Dr. Omura had accidently found natural chelation in coriander (cilantro) so after further study I decided that it would not harm and made some GFCF coriander and pear muffins (sounds awful but he loved them!) his dad was away while I added a daily amount of coriander to his diet and was amazed on his return, saying that he is just so much more engaging. Of course this kind of recovery is not proven… why would a pharmaceutical company spend millions on a study that will not make them any profit? In my sons case there is a genetic link, but I still know that I have enhanced his life and his future. I am so grateful for your comment because you are right… we are the parents that care enough to put everything on the line for our children. Why are people not recognising this… why are they fighting us… I can hand on my heart say that my family have a much healthier diet than anyone I know and most come to me for dietary advice! What’s so good about bread anyway? In fact I believe our diet is better than most of the population of the UK. Would they rather us just give up on our children. I have never, and never would, put my children at risk. I even didn’t want to risk giving my child supplements because I didn’t have any advice and didn’t want to risk an overdose, so instead, I set about making food that contained all the nutrients he needed and then some! I cut out additives, colouring, artificial sweeteners/flavouring, pesticides and GSM. What harm can this do? In fact he was such a sickly child that he had to take antibiotics about 4 or 5 times a year and I bought calpol on a monthly basis. This last year he has had antibiotics once and I have owned a half filled bottle of Calpol for about 18 months! I really hope you get to read this comment as I want you to know that your story of your daughter has really inspired me… you must be so proud. It is not easy being a single mum of 2 children 1 of which has autism… and then putting all the extra pressure on yourself… my feet hurt from standing and cooking so long and my hands are dry and cracked from all the washing up, my eye are surrounded by dark circles from the continuing painstaking research, But I have high hope for the happy future for my children and thanks to your comment the knowledge that I’m not alone!
To label the entire spectrum of alternative treatments as “CAM” and then dismiss them with a wave of the arm and one anecdotal story is misguided. The biochemical signature of autism is well understood and is responsive to nutritional/dietary interventions.
I am saddened to see such a one-sided and ill-researched article in this publication.
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