The Latest in Original Autism News: Placing Autistic People in the Workforce

(Originally posted for The Voice of Heard on January 1, 2013)

For over five years, I have worked part time at Goretti’s, a local supermarket in my hometown of Millbury, with a minimum wage of $7.50 an hour. Besides bagging groceries, my tasks also include sweeping up the floor, putting baskets back into the lobby, vacuuming the lobby, removing carriages from the parking lot, disposing of trash and cardboard into their respective compactors, tending to the recycling machines, and returning unwanted items to their respective aisles. Although I am capable of more advanced tasks than this, I have not been able to bring myself to look for a higher paying job that would make use of them. Even though I have reading and writing skills refined from years of college, this blog, and an increasing personal library of books here at home, there is one obstacle that I have yet to overcome: communicating with other people in a way that would allow me to make sense to those other people. That is because I have my autism, a social psychological condition which makes communication and social interaction among other people different from people without it (generally referred to as “neurotypicals” in most autism circles) and decidedly more difficult, which ranges based on severity. Most people diagnosed with autism are generally unemployed because of their difficulty communicating with other people and understanding unwritten social rules and norms which most people take for granted. In my case, I still live with my parents even after graduating from high school in 2006 and college in 2011. I generally depend on them with college finances, driving, having a roof over my head, and so forth.

The Latest in Original Autism News/ The Role of Older Fathers in the Development of Autism, the Dangers of Special Education Cutting, and a New Martial Arts Program for Autistic Kids in New Jersey

(Originally posted for The Voice of Heard on August 23, 2012)

In today’s news, a study published online by the science journal Nature provides the best support yet for the argument that the cause of autism is a genetic factor. However, it is doubtful that this recent finding will persuade other people who hold onto the popular belief that vaccinations in children are correlated with the development of autism in those children.

Last year, an autistic man was denied a heart transplant because of his autism. Now I just have to ask: how would autism, a complex developmental disorder that, depending on the severity of the spectrum, affects the ability to socialize and communicate with other people as well as a sensibility to noise, could possible complicate a surgical procedure that would pretty much save that man’s life, among other benefits to his health? Today, an Australian autism expert warns of the dangers that autistic children in that country would have to face if funding for the special education of these children gets cut.

There is some good news for autistic youths interested in martial arts. In New Jersey, a new martial arts program called Special Dragons is recently set up to give autistic children activities that would help them achieve success in their daily lives as well as in school. Aside from getting exercise, they will also provide anti-bullying strategies for those who experience bullying on a daily basis.

Judge Rotenberg Center: Taking a Stand vs Turning a Blind Eye

(Originally posted for The Voice of Heard on August 12, 2012)

It has been quite a while since I last wrote about the Judge Rotenberg Center, a special education school based in Canton, MA for children and young people with behavioral, emotional, and developmental problems and disorders. It is also the only school in the whole country that legally uses aversive therapy to improve their behavior and make them better and more productive independent members of our society, or so they claim. As I have stated in my first posting on the Center, this “behavior modification program,” consists of electric shocks, physical and mechanical restraints, punishment-and-reward programs, forced cohesion to behavioral expectations, and 24/7 monitoring at all times. Numerous investigations have been conducted and actions have been taken against the JRC in regards to the questionable effectiveness of this aversive treatment in disabled children and how it is actually damaging them physically and psychologically. The latest news I have obtained are cases in point.

The Verbal Abuse of Autistic Children: A Silent Social Problem

(Originally posted for The Voice of Heard on April 28, 2012)

As most people familiar with autism already know, the developmental disorder makes self-expression for children and adults affected by autism difficult at best and impossible at worst. That aspect of the disability alone makes them susceptible to a social problem that would go unnoticed by their families and friends: verbal abuse. I bring up this fact because two days ago, I read an article in the Telegram and Gazette about how an autistic 10-year-old boy has been going through verbal abuse at his New Jersey school and how his father found out about it by placing a hidden tape recorder on him upon receiving reports of outbursts and physical violence against teachers. Though the recordings, the father learned how members of the school’s staff were calling his son names like “bastard,” “tard,” “a hippo in a ballerina suit,” and “little dog.” Just today, I read that a teacher was placed on paid leave by the school upon learning of the probe. Legal and privacy issues aside, I find this treatment against a child who can’t express the problem on his own to be revolting. In my opinion as an autistic individual, the teachers responsible for this abuse seem to consider children like him to be sub-human. According to the article, there have been at least nine other incidents across the US since 2003 in which verbal abuse against autistic children at school. Those were only officially reported cases. Now I’m not trying to raise a panic among parents here, but I wonder if there are other such incidents that are going unreported due in part to the fact that autistic children have difficulty expressing themselves, especially when it comes to them being mistreated by other people.

The Latest in Original Autism News/ A University Support Program, A Possible Re-definition, and Obesity as Latest Cause of Disorder

(Originally posted for The Voice of Heard on April 9, 2012)

I have read a few curious and interesting articles regarding autism in the past week. The first, and most peculiar, article was one in my father’s latest issue of Arkansas, a magazine exclusively for members of the Arkansas Alumni Association. The short article discusses a support program at the University of Arkansas, which is designed to help autistic college students who have the cognitive abilities to succeed but require more help than their neurotypical peers. More information on this program can be found at the University’s website.

The Doug Flutie Foundation and UMass Lowell’s Disable the Label Week and Autism Awareness Month

(Originally posted for The Voice of Heard on March 25, 2012)

A few weeks ago, I spotted a curious article on the front page of The New Uxbridge Times during one of my shifts at Goretti’s Supermarket where I work. It discussed an Uxbridge resident who was selected to represent the Doug Flutie Foundation for Autism in this April’s Boston Marathon. I check out their website and learned that it was founded by Doug Flutie, a former NFL quarterback of the Buffalo Bills, in honor of his son, Doug Jr., who was diagnosed with autism, specifically Childhood Disintegration Disorder (CDD), at age three. Through that organization, he provides aid to financially struggling families in order to provide the support and resources they need to help relatives with autism. More details can be found in this link to the website.

Yesterday, I have also took notice to a few flyers autism-related programs supported by UMass Lowell while I was taking part in their study of autistic adults’ emotional responses to one-minute samples of music. One of those is their annual Disable the Label Week, which is held in the first week of April as part of UMass Lowell’s Autism Awareness Month. One of the events held that week on Tuesday is a performance by the Asperger’s Are Us comedy group comprised of four young men with Asperger’s Syndrome. Another event held on Wednesday during the Disable the Label Week is a free movie night show a movie titled Temple Grandin, a biopic of the autistic woman who is an expert in animal behavior who promoted humane treatment of animals in livestock handling facilities. More details can be found in this promotional flyer.

As an autistic man, I find these latest autism news updates to be really good since the Doug Flutie Foundation and UMass Lowell’s Disable the Label Week are both concerned with raising autism awareness and providing ways for autistic individuals and their families to improve the quality of their lives; I was especially glad to know that they are not portraying autism as a disease to be cured and affected individuals as “an infected population to be isolated and quarantined” as organizations like Autism Speaks would.

Would Practicing Martial Arts be Beneficial to People with Autism?

(Originally posted for The Voice of Heard on February 28, 2012)

Throughout my life, martial arts have fascinated me. As a child, I watched a TV show called Mighty Morphin’ Power Rangers. While I attended my brother’s little league hockey games, I hung around arcade machines, fixated on games including Mortal Kombat, Killer Instinct, Darkstalkers, and Street Fighter. At some point during my early teens, I started playing the video game Tekken 3 for the original PlayStation. Starting in my late teenage years, I’ve been watching martial arts action movies featuring stars like Bruce Lee, Jackie Chan, and Jet Li. Around the same time, I collected a few books on martial arts, focusing mainly on the pictures than the text; I have yet to actually read them. At one point, I attended a karate class 8 years ago not only as a form of exercise for getting strong but as a way I can fight back when I needed to defend myself. However, I felt I wasn’t really learning anything in the group lessons and repetition of the same instructions. After two months, I dropped out of the karate class and moved on with my life. In my spare time during the course of 8 years, I played fighting games like Street Fighter, Mortal Kombat, Tekken, King of Fighters, Soul Caliber, and Virtua Fighter alongside other video games; my evenings are dominated by watching movies including Chinese action dramas like Iron Monkey, Crouching Tiger, Hidden Dragon, Hero, and Ip Man; Thai movies like Chocolate, featuring an autistic woman who absorbs fighting skills by watching movies, and the Ong-Bak series, featuring Muay Thai practitioner Tony Jaa; a Japanese movie titled Ichi, which featured a blind swordswoman; and (just last night) Only the Strong, which tells the story about a US soldier trained in Capoeira, a Brazilian martial art, who returns to his hometown and goes up against a Jamaican crime lord who also practices Capoeira. At one point, I wrote a brief entry about autism, martial arts, and my personal fascination with martial arts in the old version of my blog three years ago.

How There Can Be a Minority Within a Majority In Regards to Autism

(Originally posted for The Voice of Heard on February 20, 2012)

I feel a sort of regret when I wrote my last entry on autism and how I thought it no longer makes sense to even consider it a disability. To be honest, I should have known better than to have the ability aspect overshadow the functional abnormalities that come with the disorder. The autistic people I have mentioned are most likely to have a mild form of autism called Asperger’s Syndrome much like myself. Even so, they can still have difficulty in social situations, communicating with other people, be overwhelmed in certain situations, and are still dependent on their parents even as adults. Those with moderate to severe forms of autism, on the other hand, are harmed by noises, unable to support themselves or handle many of the tasks of daily living most people take for granted, and cannot even speak. As a relative who commented on that entry pointed out, they do not have much in common with me. Unlike myself, not many autistic people can develop social skills well, cook their own food, do well in school, having a job and doing it well, earning a living, spend and organize money, graduate from high school with highest honors, endure college while getting good grades in the process, being recognized and inducted into a national honor society, graduating from college with highest honors, and be able to live independently. I feel like I am part of a minority within a majority of people on the autism spectrum.

Autism: Why It No Longer Makes Sense to Consider The Condition A Disability

(Originally posted for The Voice of Heard on January 9, 2012)

Is autism really a mental disability? That is a question that I have occasionally asked myself ever since I wrote my entries on the myths of autism and my review of the book Autism’s False Prophets. It is true that there are many forms of autism out there ranging from mild ones that cause some people born with it to have difficulty in social environments to much more severe cases in which severely autistic people cannot talk at all. The truth is the word “disability” is generally defined as an illness, injury, or physical handicap that restricts/limits one or more functions in people affected by it, leaving them in a disadvantage. To apply that term to people with broken or missing limbs and the elderly is one thing. But applying it to one of the most complex mental conditions in the world is an entirely different matter. And when it comes with defining autism as a disability, most people seem to see it as a defection or, as some advocacy groups like Autism Speaks seem to portray it, a disease which devastates children and calls for a cure. While autism does limit social communication to various degrees, it should be noted that this disadvantage is made up for by abilities that sometimes surpass most normal people, including but not limited to writing, math, mechanics, and computer technology. Sometimes, some autistic people gained public attention via their talents. Temple Grandin, for instance, used her Ph. D. in animal science and her unique perspective on animals to promote humane treatment of animals. John Elder Robinson attracted the public with his ability to “visualize” machines in order to make them, take them apart, put them together, and repair them. Yet the publicized talents of autistic people like Grandin and Robinson did not end the debate of what autism generally is as a condition. Even though such people sometimes serve as role models for some autistic people, their experiences with autism do not add any new information about autism in general. What I mean by that is that they fail to answer the following questions: how can autistic people get the best quality education possible? How will the social injustices they experience, such as bullying and discrimination, be addressed? How can they find employment in society, make a living for themselves, and move upwards? What can be done to help autistic people have happy, healthy, and independent lives they can call their own?

The conventional portrayals of autistic people in the media, mainly in movies such as Rain Man, as either superhuman savants or emotionally unstable loners, do not help matters in the issue either. Armed with the Internet, some autistic people are not only speaking out against these media portrayals as well as the labeling of autism itself as a disease to be cure; they are expressing how they are just fed up with the conventional wisdom and popular beliefs of autism. The autistic YouTube user known as aspie182 is just one example. Ari Ne’eman, the first autistic presidential appointee who heads the National Council on Disability (NCD), and Amanda Baggs, a nonverbal autistic woman who issued a political statement on autism with her YouTube video, “In My Language,” are also speaking out against the conventional wisdom of autism in general; both autistic individuals have received extensive coverage from Wired Magazine.

In my experience, autism makes me who I am and I don’t find any part of me to be defective despite my few character flaws. Having said that, I kind of regret putting the word ‘autism’ under the “Disability Issues” category of blog posts. If you have something to say on this matter and would like to contribute to the topic, you are free, as always, to do so in the comments section (as long as the comments are not just sayings like “thanks for posting” or “I like your blog,” are something constructive, and are not spam).

Original Comments

Ken
January 9th, 2012 at 8:33 pm 

I think it is good to examine these issues, but keep in mind that disability is defined not by arbitrary categories but based on functional capacities. People with autistic spectrum diagnosis who write on the internet are likely to be identified with Asperger’s Syndrome which is a whole other circumstance. People with moderate to severe autism are generally unable to support themselves or handle the tasks of daily living; they don’t have much in common with you.

• Timothy Heard

          January 9th, 2012 at 9:29 pm 

          You’re right. I should have mentioned the fact that the autism the people who write on the Internet have is likely to be Asperger’s Syndrome. I have also been aware of the fact that there are severely autistic people who cannot support themselves or even handle the basic tasks of daily living by themselves; they are truly disabled. I feel bad for not mentioning that as well now that I think about it. Since none of the autistic people I mentioned have much in common with me as you mentioned, I don’t have much in common with them, either. That makes individuals with autism even more unique because there is a wide spectrum of autism that affects them differently, for better or for worse. Perhaps next time I’ll do an entry on people who are severely autistic, though I don’t know if I even should.

Alesia
May 11th, 2012 at 3:23 am

I have a 28 month old daughter dx’d with motreade autism, global delays, non-verbal and will be dx’d with dyspraxia when she turns 3. She started mild SIB about 9 months ago and so far we do the chewy tube and vibrating toothbrush to redirect her. I have watched some of your videos since I first suspected autism and you have shown so much courage and strength. I think you are the most awesome mom and you are so beyond calm, Jamey is such a handsome young man.I truly thank you for sharing.VA:F [1.9.14_1148]please wait…VA:F [1.9.14_1148](from 0 votes)

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.

Updates Regarding the Judge Rotenberg Center and A Summary of Its Aversive Therapy Treatments

(Originally posted for The Voice of Heard on December 3, 2011)

Note: In reposting this article, I had to fix a few broken links and search for a few new images, mainly that of a Graduated Electronic Decelerator (GED) Credit for some of the photos goes to the staff responsible for the CBC 1993 "Eye to Eye" report and Larry Sultan, the photographer who accompanied Jennifer Gonnerman when she visited the JRC in 2007 for her Mother Jones article.

Above: The front entrance of the Judge Rotenberg Center, located in Canton, Massachusetts, 20 miles outside of Boston.

Autism Advocacy Groups: Businesses Specializing in Increasing Awareness of an “Autism Epidemic”

(Originally posted for The Voice of Heard on October 17, 2011)

If you have read my recent entries on the myths of autism, you’re probably wondering “why didn’t you debunk the myth that advocacy groups like Autism Speaks are helping people with autism and their families?” That was my intention a few weeks ago but I decided that trying to do just that would take a lot of space; more space, in fact, than the other myths I’ve gone over. So I decided that I would save that task for this entry. In the course of my research into autism advocacy groups, I just couldn’t help but ask: why do they portray autism as a disease that’s a burden on the families of the affected? What good would it do for those families to give the advocacy groups so much money in order to provide help to their autistic children? Where does all the money really go other than research for causes, treatments, preventions, and cures? These questions have to be taken into consideration as I go over three major autism advocacy groups, which I would refer to as the Big Three (for reasons I will express later on in this post).

1. Generation Rescue

Advertisments sponsored by Generation Rescue, like the one shown here, have been running in newspapers like USA Today.

Founded on May 24, 2005 by a wealthy financier named J.B. Handley along with his with, Lisa, this non-profit organization got its start by promoting chelation therapy and recruiting 100 parents of autistic children, known as “Rescue Angels,” to spread the word about the therapy as a miraculous cure of autism. What prompted them to do so was because they believed to have witnessed this so called miracle when they treated their autistic son, Jamie, with chelation therapy. Between the time since the organization’s foundation and January 2007, Generation Rescue entered the mainstream spotlight with an aggressive media campaign, part of which included sponsoring full page advertisements in major newspapers, mainly the New York Times and USA Today. In 2008, the Handlys produced Autism Yesterday, a documentary film claiming that autism is a reversible biomedical condition. Such media coverage had promoted the myth that autism is a form of mercury poisoning, largely from vaccination. The organization’s belief in the myth and the “miraculous power” of treatments like chelation therapy is evident in their original mission statement:

Generation Rescue is a non-profit organization founded by parents of mercury-poisoned children dedicated to providing other parents with the truth about the cause of their children’s neurological condition. We have united out of the shared bond, anguish, and outrage at discovering that our children have been mercury poisoned. Right now, thousands of parents armed with the truth are successfully healing their children. (Note: I tried to find this quote, which was featured in the book Autism’s False Profits, on the group’s website but I could not find it.  I assume it was taken off.)

While researching Generation Rescue on the website Neurodiversity.com, I noticed that how the “Rescue Angels” deal with autistic individuals was anything but angelic, as evident in an email sent to J.B. Handley to a mother of a child with Asperger’s Syndrome complaining about their behavior and attitude toward autistic individuals like the autistic blogger Autism Diva. It is also apparent that the group functions more like a religious sect than a group promoting scientific advocacy based on an email exchange with J.B. Handley and Kathleen Seidel, the creator of Neurodiversity.com. Today, Jenny McCarthy, a former Playboy model who became an autism advocate, currently acts as president of Generation Rescue.  Besides chelation therapy, Generation Rescue now promotes other biomedical treatments for autism, including diets free of glutin, casein, and soy; vitamin and mineral supplements, homeopathy, and other treatments said to heal the “leaky guts” of autistic children.

2. Autism Research Institute (ARI)

Dr. Bernard Rimland (second to right) stands in front of the Autism Research Institute (ARI) in San Diego,CA, which he founded in 1967 and was the director until his death in 2006.

Dr. Bernard Rimland (1928-2006), originally a research psychologist for the US Navy, established this organization in 1967 in San Diego, California because of his wariness of the slow pace of research on autism. Although he played a role in disproving the refrigerator mother theory of autism promoted by Bruno Bettelheim, he promoted a theory which turned out to be another myth: that autism was fundamentally a biological disorder that resulted from environmental factors and/or defective genes. Later in 1995, the ARI brought together a group of 30 scientists and physicians to exchange information and ideas about alternative solutions for treating autism in a conference which became known as Defeat Autism Now! (DAN). Known as DAN doctors, these practitioners offered alternative therapies to many parents who believe that the major medical establishment is lacking an immediate solution for their children’s autism. The DAN therapies, some of which are only performed by special laboratories working directly with DAN, consist of eliminating substances that could damage the children’s guts, re-inoculating them with healing bacteria, and repairing them with nutrients. Before these therapies could even begin, however, the autistic children in the DAN doctors’ care had to go through many daunting tests, including but not limited to blood tests, urine tests, and stool analyses. Such tests, like the therapies themselves, are widely diverse, highly expensive, and disproved by many members of the scientific and medical communities. They cost thousands and sometimes tens of thousands of dollars and are rarely, if ever, covered by medical insurance, forcing parents to pay for them out of their pockets and bank accounts. Many DAN doctors, 300 of which currently practice in the U.S. as of this writing, have been disciplined by medical boards across the country for their unethical and illegal practice of medicine and several of them had their medical licenses suspended or revoked because of it. Even more disturbing, the ARI only lists the names and locations of the DAN doctors and not the majority of doctors, physicians, and scientists who don’t find the tests and treatments promoted by DAN to be useful in autism research and practical use in the field of medicine. Regardless, the ARI still declares autism as a treatable disorder and the DAN conferences are still being held to this very day.

3. Autism Speaks

This walk held last year in Los Angeles, CA was one of the many walks held by Autism Speaks that raises funds for its programs.

This is the world’s largest and most influential autism advocacy organization, created five years ago by Robert and Suzanne Wright, wealthy grandparents of a child with autism and financially launched by a $25 million dollar donation from Bernie Marcus. Merging with three other autism organizations since its founding, Autism Speaks has acquired large amounts of money from donations and its walks for a cure. According to their 2010 annual report, they have received $50 million dollars from public support (which includes corporations, celebrities, and charities) and spent at least $2 million dollars in advertising. Examples of such donations are many; Toys “R” Us has donated over $1 million dollars; Bank of America contributed over $200,000; Robert and Suzanne Wright, the very people who started Autism Speaks, personally donated over $100,000 to their own organization; and Universal Studios donated at least $25,000. The majority of the funds accumulated by Autism Speaks go into research grants that “[fund] research into the causes, prevention, treatments, and a cure for autism.” The research sponsored by Autism Speaks mainly focus on detecting genetic and environmental factors, diagnosis, and ways of detecting signs of autism in embryos. There have been occasions when Autism Speaks got into conflict with the autism community. One of them took place in September 2009 when a controversial short video title “I Am Autism” was screened at a World Focus on Autism event held annually by Autism Speaks. A year earlier in January, an autistic blogger was forced to shut down his site which was a critical parody of Autism Speaks. Autism Speaks had threatened him with legal action for him to stop using its name and logo on his blog without their permission.

When I analyzed Generation Rescue, the Autism Research Institute, and Autism Speaks, I have found that all three autism advocacy organizations have plenty of things in common, which is the reason why I referred to them as the Big Three earlier. They are all 1) well-funded by the public; 2) represented by influential businessmen, physicians, celebrities; 3) they tend to portray autism as an epidemic that needs to be cured, 4) focus their funding on treatments, causes, and cures; and 5) not include any people with autism to represent them or even include them in their discussions. On the surface, these major autism advocacy groups appear to have good intentions in regards to helping many families affected by autism. When examined closely, however, they are more like businesses specializing in increasing awareness of an autism “epidemic” while making money off of parents’ concerns for the well-being of their children with autism. Many people may not be aware of this, but there are many autistic individuals who are actively speaking out against groups like Autism Speaks for focusing more on searching for a cure for autism than on finding ways to improve the lives of autistic people so they can function independently in society. I will be covering such individuals in a later post. If you wish to validate my information about the Big Three, I recommend reading the book Autism’s False Prophets as a start. I also suggest you take a look at their websites so you can see the point I am trying to get across here and also research them using Neurodiversity.com for additional information.

Original Comments

AutismNewsBeat
October 19th, 2011 at 2:50 pm

“Generation Rescue is a non-profit organization founded by parents of mercury-poisoned children dedicated to providing other parents with the truth about the cause of their children’s neurological condition,” etc.
There is a huge split in the anti-vaccine community over the role of thimerosal in autism. Not whether mercury causes the disorder – that’s a given among these groups – but whether all autism is caused by mercury. Handley has backed off his original position that all autism is mercury poisoning. The myth can be traced to a 2000 article in Medical Hypothesis called “Autism: A Novel Form of Mercury Poisoning.” I wrote about the “study” here:
http://autism-news-beat.com/archives/27
Thanks!

Itzel
March 24th, 2012 at 8:30 am

Actually, chelation is being used to treat more than the rrucmey the thought is that our kids can’t get rid of many of the heavy metals to which they are exposed. This includes lead, molybdenum, arsenic, copper, etc. Most people can stand some exposure to these things and filter them through their bodies, but a lot of these kids can’t.Every child I know except 1 who has done chelation with a knowledgeable and cautious M.D. has seen enormous success. If done properly, and preceeded by dietary changes and getting the body as healthy as possible, it’s amazing what can happen.

Rahul
May 10th, 2012 at 7:19 pm

before and will say again) do I think there is anything about my son that needs “cured!” Does he need help to fuotnicn in life? Yes! Do I need to teach him and educate him? Yes! Do I think he is somehow flawed? No!!

Autism Myths: An Autistic Person’s Attempt to Debunk Them

(Originally posted for The Voice of Heard on September 30, 2011)

When it comes to general knowledge of autism, rumors and myths tend to get mixed in with information on the disorder circulated by newspapers, TV shows, movies, books, and the Internet. When evaluation of such information is too difficult for some people, they would tend to look for the most basic and noticeable signs of autism, mainly odd hand movements, lack of communication, limited interaction with people, and very narrow interests. Once they find those said signs, they would end up making assumptions about autistic people in general and lead to stereotypes that are inaccurate at best and offensive at worst. As an autistic person myself, I feel that I have an obligation to clear up the misconceptions regarding autism in general in any way I can. I know other people have already compiled lists of autism myths on the Internet but I thought that maybe I could take a crack at making one. In this post, I will go over the myths, some of which have been debunked while others remain prevalent in the minds of the general public, based on my understanding of autism and my experience with autism.

The Judge Rotenberg Center: The Most Unethical Disability Treatment School

(Originally for The Voice of Heard posted on May 13, 2011 as 'The Judge Rotenberg Center: The Moral and Legal Reprehension of Disability Treatment at an Unethical School')

Ever since I was first diagnosed with autism as a child, my parents had sent me to special education programs, speech and language therapies, and hired aides that have helped me develop socially and intellectually over the years of my life. I have been and still am grateful to my family, teachers, and peers who have helped me get to where I am today. However, I have learned a few months ago that there is a center with a program for disabled people similar to myself and others with more severe conditions, including schizophrenia, bipolar disorder, post-traumatic stress disorder, severe autism, mental retardation, and emotional disturbance. Unfortunately, the students who attend the center are not developing as well as I have and how they are treated is, in my father’s words when I first told him about its existence, “morally and legally reprehensible.” The center is called the Judge Rotenberg Center, located in Canton, Massachusetts, 20 miles outside of Boston. The treatment is a “behavior modification program” that consists of electric shocks, physical and mechanical restraints, punishment-and-reward programs, forced cohesion to behavioral expectations, and 24/7 monitoring at all times. Any form of social interaction between students, staff, and among themselves is discouraged as part of the JRC’s treatment program.

Old Autism Posts from The Voice of Heard

More than a month ago, I received a notification from WCCA TV13, the local TV station that launched the start of my blogging, requesting that my original blog, The Voice of Heard, be removed from their hosting services since it was not being updated. Upon reading it, I immediately copied and pasted all of my published posts going back to early 2011 as Word documents. In the process, I decided it would be best to re-post some of them in my other blogs; in the case of Loud and Strong, all of the posts I've done on the various topics surrounding autism, with comments included for the sake of completion. With a few edits, image replacements, and link fixes, these posts from The Voice of Heard will be released in a couple of days under the label 'The Voice of Heard (old posts)'. Stay tuned!