My Personal Review of Autism’s False Prophets

(Originally posted for The Voice of Heard on October 5, 2011)

Ever since I posted my entry on the myths of autism last week, I have considered adding a couple of more entries that discuss this. One in which I’m posting right now is about a book review I have done on my Goodreads account. The book I reviewed is Autism's False Prophets, a book written by Dr. Paul A. Offit, a vaccine specialist who basically got fed up with the perpetuating myth that vaccines cause autism. What follows below is the review itself as I have written it. (On a side note, Goodreads is a website in which you can share books and reviews on books with your friends while you organize and keep track of the books you own, wish to own, what you like and don’t like, and write as many reviews on the books as you want.)

There is a lot of information on autism being generated and circulated by rumors, the mass media, and the Internet. Critically evaluating this vast body of information is like trying to navigate a large ocean that is almost impossible to navigate. That is what it is like for most people when they try to understand autism in order to help their loved ones affected by it, mostly their children. This book acts as a compass and a radar to navigate the ocean of information in order to separate the facts of autism from the myths, misconceptions, and falsehoods regarding what it is, how it develops in the brains of those affected by it, what causes it, and what can be done to help autistic people. The book opens up with the author, Paul A. Offit, briefly describing in this edition’s prologue his reasons for becoming a medical doctor and his experiences with the hate mail and death threats he received from angry parents of autistic children on the assumption that vaccines (his speciality) caused the disorder. In the introduction, he makes a comparison with the increased visibility of autism to the polio epidemic in early-20th century America in terms of public response. In both cases, people panicked and desperately sought any form of solution to deal the outbreaks (Note: the growing rate of autism is note really an outbreak) and, if possible, cure them. When the science and government institutions could not provide immediate answers to the general public, a few doctors have appeared with them and promises of a cure. To many people, especially parents, such doctors are like prophets that promise a deliverance of a sort of salvation from the epidemics; they were the only ones who cared about them and have the best of intentions. Unfortunately, such assumptions were not the case as those so-called “prophets” have treated their patients with difficult and expensive therapies that have no validity in science, were ineffective and, in some cases, dangerous. Given this fact, they are ‘false prophets’ who emotionally and financially exploit the desperation of parents seeking a cure for their children’s autism for their own interests and benefits. The rest of the book then goes over the many circumstances that gave rise to and permeate the ‘false prophets’ in regards to autism. They include the lack of public understanding of science, the failure on part of the public and the science institutions to communicate, how information on science is filtered by the mass media with mixed results, and the culture that equates commonly held beliefs with common wisdom, that seems to thrive on cynicism and scandal, and that considers reason to be an enemy of emotion. The author also discusses, in layman’s terms, the profiles of such ‘false prophets’ as Andrew Wakefield, Mark and David Gier, Lyn Redwood, and Sallie Bernard, the motivations of promoting their cases as to what causes autism (the myth that vaccines cause autism, for example), and their personal agendas they sought to achieve through publicity campaigns and lawsuits against vaccine manufacturers and the government. The autism advocacy groups including Defeat Autism Now (DAN), are also discussed. The parents who are skeptical of the whole issue, most of whose children have autism, are also discussed. Such parents include Kathleen Siedel, founder of the website neurodiversity.com, Camille Clark, a mildly autistic blogger known as Autism Diva, and Michael Fitzpatrick, a British physician with an autistic son and a critic against the vaccines-cause-autism myth promoted by Andrew Wakefield. As an autistic person who is currently living with my parents who have been skeptical of the disorder since my birth (and have given me this book for my 25th birthday), I highly recommend this book to anybody who wants to have some crystal clear information about autism, including parents with autistic children, people with a form of autism, aides and teachers to autistic students, and other people who have an interest in autism. It will prove to be a helpful navigator in the vast and cloudy ocean of unevaluated information on autism.

The second entry I plan on posting in regards to the myths of autism will be discussing advocacy groups like Autism Speaks and Defeat Autism Now (DAN) that preach the message/myth that the condition is an epidemic that damages children while promoting treatments and therapies that were disproved by most of the medical science community, making substantial amounts of money, and all while never had anyone with autism speak for them on their behalf. So make sure you stay tuned for the update as I plan on doing it soon.

Original Comments

Jamie
October 10th, 2011 at 2:19 am

Tim, You have great skill in writing, and I believe you could publish your own book on autism, or frankly just about anything you have a passion to write about. Have you thought this over before? Your blog could just be the start of a career as an author. Your writing style could be classified as academic. You could start with journal submissions to university publications.

Noemi
March 24th, 2012 at 8:59 am

Hi EdPlease don’t apologise for who you are! The US is a instaatfc place. After all, many of my favourite people are from there!The NAS is a good organisation. They have been working hard in recent years to become much more inclusive of autistic people at all levels. I recently had to vote for some positions on the NAS hierarchy, and I was able to choose all autistic candidates. The NAS gave me reasonable and fair advice when Duncan was younger, and their free ‘EarlyBird’ course for parents, was one of the most useful things I did at that time. The information in this campaign is also fair and if more people are made aware of correct information about autism, I think it’s a good step towards understanding and acceptance of diversity.I don’t know much about the ASA, but what do know makes me very grateful to have the NAS to join, and not the ASA.

Autism: Being Aware of...What Exactly?

Autism. A developmental disorder that affects that person's ability to communicate and socialize with other people, which he or she finds difficult, and also causes the person to think in literal and concrete terms, have limited to no control over their body movements, sometimes find comfort in rigid routines, and engage in stereotypical behaviors, such as flapping arms, hitting an object over and over again, and talking to him/herself; in short, autism affects the person's ability to function in society, depending on the spectrum. The spectrum, or severity of the disorder, ranges from mild to severe. For those with mild forms of autism, they are able to assimilate in society via family, friends, school, and the workforce. In more severe cases, an autistic person is unable speak and express him/herself, is extremely sensitive to light, sounds, and crowds, and has behavior problems that result in self-injury, consisting of, for instance, head banging and hair pulling.

Ever since Leo Kanner discovered it in 1943, many people have been unsure as to what to make of autism and how to deal with it. Numerous studies in science, medicine, and social psychology have been conducted to examine how autism has been occurring and look for ways to deal with it. At one point, it was believed that children develop autism as a sort of coping mechanism due to a lack of emotional attachment to cold uncaring mothers, a theory which has since been debunked. Some people believed, and still believe, that autism was a side effect of a mercury-based preservative found in vaccines, an emotion-fueled dogma that has been consistently debunked by the medical community. There is now growing evidence that autism is rooted in genetic factors. Yet with all the progress being made in the science of autism, there is still a debate as to what can be done to improve the lives and well being of autistic people. For example, there is some confusion in the use of the terms "autistic person" and "a person with autism." An autistic person is someone who is born with autism. When someone is referred to as "a person with autism," it implies that autism is something that can be removed like a splinter embedded in skin; an emotional shell that protects a "healthy and normal" human being that needs to be cracked; and an inhibiting disease that needs to be cured. Of course, that may be a minor thing. But such simple terms are just the tip of the iceberg. In many attempts to raise awareness of autism among the general public, the information that comes from research studies and parent-led advocacy groups and gets transmitted and filtered by the mass media, consisting of newspapers, magazines, radio broadcasts, television, movies, books, etc., has been affecting, for better or worse, how autistic people are looked upon in society. The debate has also been affecting, both directly and indirectly, the quality of life autistic people lead as children and adults, the opportunities in employment and education being made available to them, and how their dignity as human beings gets defined in mainstream society. In short, autism awareness as it is now has been, for all intents and purposes, a problem that leads to inaccurate myths about autism, eight of which I have personally debunked a few years ago. In order to demonstrate a basic understanding of this problem, I will briefly go over a few key components of the mass media that affects how society perceives autistic people: movies and images accompanying news stories. In movies featuring autistic characters like Rain Man, Mercury Rising, and Mozart and the Whale, autistic people get depicted as having limited to no emotion and possessing either extraordinary (almost supernatural) abilities such as pattern-recognition, perfect memory, and complex mathematics (leading to the savant stereotype) or diminished intellectual capacity. When images are featured with news stories about autism, they tend to portray autistic children as fragmented and imprisoned by the disorder. The words 'fragmented,' 'imprisoned,' and 'disorder' are just a few of the many key words that are part of the problem of raising awareness of autism.

When it comes to even talking about autism, the developmental disorder is often spoken of as one that diminishes the quality of the person born with it as a human being, a belief that some people are striving to debunk by not even calling autism a disability. Words, besides the ones I just referred to, that reinforce this notion include 'deficit,' 'impaired,' 'retarded,' 'devastating,' 'destructive,' 'puzzle,' 'illness,' 'epidemic,' 'broken,' 'restricted,' and 'limited,' among others. When talking about autism in this context, it is like saying "be aware that [so-and-so] has autism, so he/she might end up destroying something;" or "be aware that it may not be easy to talk to this person since he/she has autism;" or "be aware that he/she may get into a temper tantrum if you [insert any action here] because of his/her autism;" or "be aware that he/she may get upset over something you say that you usually find funny or friendly." According to Lydia Brown, an autistic rights activist, society tends to use "disability" as a sort of social and cultural antibody, a means to label, ostracize, and alienate anyone who does not behave, act, think, communicate, and socialize in the same manner as everyone else.

In conclusion, raising awareness of autism is not enough and is doing little to help autistic people of all ages have a better life, even as more research studies are being conducted to better understand the developmental disorder, which is a good thing. As an autistic man, I call for drastic changes in how the public becomes more aware of autism, understands it, and deals with it. The first step would be to change "Autism Awareness Month" to "Autism Acceptance Month." The second step would be to find ways in which children diagnosed with autism receive the best education and social communication training possible. The third step would be to support autistic people as they make transitions to a productive and independent life. It may have been too late to do the first step last month. But with enough public support, we as a society could change the way in which autism is discussed and accept autistic people without labeling, ostracizing, and alienating them by granting them the right which most people in this country take for granted: the right to lead better and more independent lives.