A Plethora of Harmful Information

**This is an archived blog post from February 8, 2011**

Very recently, Andrew Wakefield’s 1998 study on autism has been (finally) completely retracted and it is now evident that it was a total fraud to begin with.  This news is accompanied by what I imagine is a collective sigh of relief by many throughout the Autism Community, since it has been known for awhile that Autism is in fact genetic — it is not caused by mercury in the MMR vaccination (I will have to provide more information about this controversy at a later date).

After Wakefield’s study results came out more than a decade ago, it obviously scared a lot of people…a lot of parents.  Wakefield is from the UK, but the effects also reached the US.  Parents all over were so afraid of their children “getting” autism via vaccinations, so they simply stopped vaccinating their children from common, preventable childhood diseases.  Not surprisingly, the rates of those same diseases (that could have been prevented) saw a rise.

I am no expert, nor do I claim to be, yet I am going to tell what I know through my personal research.  After my son was diagnosed in October of 2009, my husband and I were left to navigate a very confusing world of conflicting studies, evidence, opinions, and treatment options.  Luckily for us, we had amazing doctors to point us in the right direction.

The team of doctors at the Riley Child Development Center in Indianapolis, IN that worked with our family in the diagnostic process were the most wondeful, understanding, and patient medical professionals I have ever met…and I am so thankful for that.  The appointment itself was almost an eight hour fiasco with Jonathan, then three years old, crying ruthlessly throughout a good portion of it.  The doctors were patient with him (as well as with all our questions), and they brought the diagnosis in a very calm and caring fashion and they didn’t send us on our way home until they had offered all the support and resources they possibly could.  For such a stressful day, it was also, in a way, a good experience.  One of the most important pieces of information they gave that day came in the form of suggested reading:  “Autism’s False Prophets” by Paul A. Offit, M.D.  I heeded their advice and bought the book…which began an insatiable thirst for the truth regarding the causes and treatments of Autism.

The book offers lots of (albeit a little dry) information not only on the science and real evidence in the autism-vaccination arena, but also gives the reader a good base of information to take with them if they so choose to do other research on the subject.  Through my personal research, I have learned what sort of language to look out for (even specific words) when listening or reading to stories pertaining to Autism and whether or not it may be credible.  Which brings me to a video:  “Can Diet Reverse the Effects of Autism“.

The video was sent to me by someone I love and who I know loves Jonathan very much, and I know this lovely individual was only trying to help.  So they will remain unscathed throughout my arguments to follow and I find no fault in them what-so-ever for sending this video.  Unless you are chin-deep in the Autism community and researching it, then one probably wouldn’t see and hear things the way I did while watching the video.  I strongly encourage you to watch the video before reading any further, as it forms the base of what I will build the argument upon. I’m going to dissect it and explain why I find certain things deplorable.

The video begins by offering hope to all those affected by Autism and putting forth this life-changing treatment administered by Dr. Kenneth Bock.  Yet, as they introduce Dr. Bock (before 30 seconds have even passed) they mention his book and put a brief picture of it up on the screen.  This brief reference is very important.  The title of the book is “Healing the New Childhood Epidemics:  Autism, ADHD, Asthma, and Allergies”.  This is the first red flag to be aware of, since this “autism specialist” places Autism in the same category as asthma and allergies.  Next, Autism is not an epidemic.  Yes, the rates of diagnosis are rising.  Yes it seems to be more prevelant in today’s society…but that could be for a number of reasons.  One is that it may be diagnosed more now, so of course the rates are going to seem like they are rising.  People who would have once just been considered odd or quirky are now diagnosed as on the high-functioning end of the spectrum.  The Autism Spectrum is so incredibly wide, and the extent to which it effects those diagnosed varies greatly.  Also on the flip-side, others severely affected may have been considered schizophrenic or simply mentally handicapped years ago rather than Autistic.  The umbrella has grown, and more people are finding themselves underneath it.  There is also the question of environmental effects on the developing brain of fetuses and infants…but we will address that a little later.

Back to the video, as the reporter speaks to the mother about her son’s lack of sleep as a baby (roughly at 40 seconds to 1 minute), if you pay attention to the bottom of the screen they put in text “Son diagnosed in ’06 & Recovered” and then “Food for a Cure?”.  Whoa…watch that language around this lady.  The words recovery and healing are thrown around throughout the rest of the interview, so these are important to consider.  Dr. Bock does mention that he is not proposing a “cure”…although that is how this interview has presented it.  Also, he must be a smart enough man, being a doctor and all, to realize that the word “cure” when applied to those on the spectrum has suffered severe backlash in recent years…so it would be advisable to claim you are NOT proposing a cure, which he seems to take into consideration.

But what is wrong with “recovery” and “healing”?  Personally I put those in the same category as “cure”.  It is suggesting that there is something “wrong” with the child, and they need to “recover”, be “healed”, or be “cured”.  If I were a child (or even adult) with Autism and I heard someone tell me they have a diet that might help me recover from Autism, I would find that quite an insult.  “They want me to recover from who I am?”  This sort of perception of Autism really took hold after Wakefield published his aforementioned study saying that vaccinations, specifically MMR, caused Autism.  This created the notion that those with Autism are “damaged products” and “unhealthy”.  This sparked a lot of doctors to find cures and/or ways to heal these precious individuals.  This is not Autism, and this is not the way to perceive it.  Autism is very specifically a disorder with a genetic, neurological difference in how the brains of these individuals function and process information.  That is why so many on the spectrum also have sensory processing problems, or specifically SPD (Sensory Processing Disorder).  How they view, experience, and interact with the world is different than their NT (neurotypical) counterparts, but the most important thing to remember is that it is genetic.  There are as many as twenty possible genes they have pin-pointed now, as far as I am aware, that may be associated with Autism.

To speak specifically about the gluten free/casein free diet — it does, in all fairness to Dr. Bock — seem to work for some children.  When I say “work”, I simply mean that it seems to alleviate some gastrointestinal distress and/or behavioral difficulties associated with the wide world of Autism.  However, it is very subjective and all parental testimony reporting the changes within the child.  (There is also the question if the diet was administered at the same time as other treatment, which then makes it difficult to determine whether it was the diet or other treatment which created the results).  There is no scientific evidence to date that suggests the special diet helps the symptoms of Autism, and some doctors don’t recommend trying it unless it is deemed necessary simply because a gluten free diet may lack fiber and certain nutrients.

With that said, I understand why some parents try the diet.  My husband and I are very fortunate that Jonathan is doing well.  He can speak and communicate, and function somewhat “normally”.  Not all children respond to the treatments available to them as Jonathan did.  Not all individuals with Autism ever speak.  Not all individuals with Autism may be able to live independently as an adult.  So, when considering what those parents must be feeling (since a parent just wants their child to do well and live a good life), I can certainly understand why they might grasp at any proposed cure or healing method.  I’m sure in their minds it is not so much they want to change the essence of who their child is, but simply they want their child to be able to function in the big wide world that is not always friendly or accomodating to those considered different than the norm.  Unfortunately, some doctors feed upon the desperation and reap substantial financial rewards for their proposed treatments that may cure the affected individual.

Also, as more and more people on the spectrum are able to speak out and advocate for themselves, they are expressing they find it hurtful and frustrating that others believe them to be damaged and in need of a miraculous recovery and/or pity them.  Most of those that are able to speak for themselves say they do not want to be changed, and despite the difficulties they may have in life because of Autism, it is a part of who they are and in some cases, has helped them get to their current place in life.  I hope that as my son grows older and more aware of the stigmas he’s going to have to grow up against, he will take pride in his differences and accept himself.  The road is bumpy at times with him, but he is a wonderful and sweet boy that I would never want to change.  Autism is a part of who he is and what makes him the Jonathan we love…just as my husband is tall and loves art and music, and as I am blonde and love everything about the written word.  It is simply who we are.

Harmful Info

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