I don't agree with some of their viewpoints, but I think Kristina Chew and Dora Raymaker highlight some serious issues fought on both sides of the ASD world. Here are their ten controversies and snippits of what they say. To read the whole article (and some of the reader comments), hit "read the rest" or click here to view their original post.

1. Personhood vs. stereotypes."
Changeling. Trapped. Suffering. Better off dead" vs "Genius. Savant! Mysterious and awe-inspiring... Just like Einstein"

2. Recovery from autism.
Who wants the cure? Parents or the individual with ASD? "Kristina writes more on this controversy in Once Upon a Time, I Tried to Recover My Son From Autism."

3. Support vs. cure.
The idea of "cure" is tied to the medical model of disability which holds that a person with a disability is "sick" and needs to be "cured;" some internal flaw has "caused" the disability...In contrast, the socio-ecological...perspective rejects the idea of "cure" as nonsensical (and in some ways offensive) as it does not view disability as a flaw that resides solely within an individual. Instead, this perspective asks, what needs to be done to bring the individual and their environment into better alignment?

4. Advocates vs. Advocates.

" 'Autism advocate' is a tricky term, as people who label themselves as such may have diametrically opposing perspectives on disability, autistic rights, and which issues are critical to address....There is a misconception that any autistic person who advocates for support and acceptance instead of cure must be 'high functioning' (see Controversy 5.) and not actually be disabled by their autism. "

5. The "autism spectrum."

"How can both a "high-functioning" college student with Asperger's Syndrome and a "low-functioning," non-verbal child with self-injurious behaviors both be on the autism spectrum?"

6. The so-called epidemic of autism.

7. Genes vs. environment.

"More and more scientific evidence points to genetics as the cause of autism, though scientists note that it's likely there is no single cause....In the end, focusing on what causes autism diverts attention away from considering issues of pressing concern to actual autistic persons and their families today, such as housing, employment and long-term supports for individuals who will need such. "

8. Fear of vaccines.
If there's no valid scientific evidence to support a link between vaccines and autism, why is there so much talk about such a link?
Wig's Note: For my own personal story of vaccinations, and why I think they play a part in activiating, if not causing, some forms of autism, call or email me. I do not agree with the authors on this point...


9. Social programs in theory vs. effectiveness in practice.
"There are a number of social service programs available for people with an autism...In theory, this sounds great, but in practice, such services are often wrought with controversy. "

10. Who can represent autistics?
"...many autism-related organizations do not include individuals with an autism spectrum diagnosis in their administration or policy. Some common arguments against inclusion are that autistic people wouldn't be mentally capable of representing their own interests, that any autistic person who would be capable must not be "really" autistic, or that it's not possible to find an autistic person who has the "right" ideology for the organization. "

What do you think?


The whole article, from their website:

1. Personhood vs. stereotypes.

Changeling. Shell. Trapped behind walls of autism. Mysterious and puzzling. Incapable of empathy. An excuse to be an asshole. A disease like cancer. Retarded. Unteachable. Lost cause. Idiot. Suffering. Better off dead.

Genius. Savant! Mysterious and awe-inspiring. Awesome at computers. Great at math. Can count anything perfectly with just a glance, just like Rainman. Just like Einstein!!!

Autistic people are alternately demonized or sensationalized, and in either case stereotyped. They are portrayed as a tragedy, the uncommunicative child rocking in the corner, devoid of her humanity. They are set on a pedestal, the brilliant savant who will revolutionize physics but never learn to tie his shoes.

Autistic people are, however, none of these things, they are human beings, complete in themselves, regardless of their level of support needs. And these stereotypes do little more than dehumanize and dismiss their very real personhood. Dehumanization makes it all too easy to justify abuse, neglect, and violation of human rights. If dehumanization of autistic people is to end, autistic people must be considered as people, which means understanding that not everyone with a particular label is going to conform to an assumption.

2. Recovery from autism.

Autism is a lifelong disability that is most likely genetic in origin. Nonetheless, claims that children have been "cured" from autism and have lost their diagnosis have been reported and are often given excessive attention in the media. But focusing on recovery distracts from attending to the needs of autistic individuals in the here and now. Parents may put all their energy and resources into so-called "cures" for autism, instead of focusing on the individual in front of them, and on the educational needs of that individual. Recovery from autism is neither possible, nor desirable.

Kristina writes more on this controversy in Once Upon a Time, I Tried to Recover My Son From Autism.

3. Support vs. cure.

The idea of "cure" is tied to the medical model of disability which holds that a person with a disability is "sick" and needs to be "cured;" some internal flaw has "caused" the disability. This is the perspective still taken by popular culture and many autism organizations.

In contrast, the socio-ecological model of disability holds that there are problems instead in the relationship between the disabled individual and their environment; disability is "caused" by a poor person-to-environment match. This perspective rejects the idea of "cure" as nonsensical (and in some ways offensive) as it does not view disability as a flaw that resides solely within an individual. Instead, this perspective asks, what needs to be done to bring the individual and their environment into better alignment? Sometimes that answer is better accommodations and environmental support. Other times that answer some sort of therapy or other form of self-improvement. The social or socio-ecological model is the perspective taken by the general disability advocacy community and many autism rights activists and self-advocates. Socio-ecological perspectives on disability favor the ideas of acceptance, education, and support as keys to a happy, healthy life.


Socio-ecological Model of Disability: Ability is a dynamic relationship between an individual and their environment.

4. Advocates vs. Advocates.

"Autism advocate" is a tricky term, as people who label themselves as such may have diametrically opposing perspectives on disability, autistic rights, and which issues are critical to address. Those autism advocates who support the medical model of disability advocate for a "cure" for autism. These people often advocate for biomedical research on causes, treatments, and cures.

Autism advocates who support the socio-ecological model of disability advocate for access, acceptance, and support, and may see autistic individuals as a minority group with its own culture within the Disability community. These people may also see autism and disability in general as an important part of biodiversity, often termed neurodiversity. These people often advocate for disability services, accessibility and community inclusion, education and therapy aimed at self improvement, and public education leading to greater autism acceptance.

There is a misconception that any autistic person who advocates for support and acceptance instead of cure must be "high functioning" (see Controversy 5.) and not actually be disabled by their autism. This is definitely not the case.

5. The "autism spectrum."

How can both a "high-functioning" college student with Asperger's Syndrome and a "low-functioning," non-verbal child with self-injurious behaviors both be on the autism spectrum?

The concept of "functioning levels" has always been used as a way to divide the autism community and to compete for limited resources, with some parents saying that their "low-functioning" child is totally unlike an adult with Asperger's, and that "severe autism" should be considered a completely separate disability. But the very notion of functioning levels is an ambiguous and even amorphous concept. What "high-functioning" and "low-functioning" mean is much less precise than those terms are often taken to suggest. HFA -- "high-functioning autism" -- is stereotypically associated with being at the "mild" or "Asperger's" end of the spectrum, and LFA -- "low-functioning autism" -- with having "severe autism." But what is "functioning" based on, after all: speech or verbal ability? IQ scores? The ability to appear non-autistic? Academic ability? Adaptive functioning? Just because an individual is of above average intelligence, gets into college, and so forth, does not mean that that individual might not struggle to have a job, be in a relationship, and live on her or his own. Rather than discredit the experiences of autistic adults as having "nothing" to do with that of a "severely" autistic child, it's important to see how there are many similarities, in responses to sensory stimuli and in difficulties with communication, and how the concept of the autism spectrum helps our understanding of autism.

6. The so-called epidemic of autism.

In the 1960s, autism was considered a rare disorder that occurred in only about 3 in every 10,000 children In February, 2007, the Centers for Disease Control (CDC) announced the results of two surveys of autism spectrum disorders covering 22 states. Using the newly-funded Autism and Developmental Disabilities Monitoring Network (ADDM), CDC researchers found an average rate of 1 in 150 children with an autism spectrum disorder, with New Jersey at the top, with a rate of approximately 1 in 100. To some, these figures suggest an epidemic -- but just because it feels like there is "so much more autism," does not mean that there is an actual increase in the number of autistic persons. While some claim that there must be "something" -- like a vaccine, or something in the environment -- that has caused this so-called "epidemic," some other reasons for the increase in the prevalence rate are: (1) greater understanding of autism; (2) earlier diagnosis of children; (3) changes in the criteria used to diagnose autism; (4) more accurate methods to count cases of autism; and (5) changes in society and culture about disability and difference, and acknowledging and accepting these.

7. Genes vs. environment.

More and more scientific evidence points to genetics as the cause of autism, though scientists note that it's likely there is no single cause. A number of popular theories about what causes autism exist in the public mindset, and include factors such as parental age (of the father as well as of the mother), TV, the levels of precipitation in the area, ultrasounds, and poisoning from heavy metals, and this list only seems to grow. In recent years, the hypothesis that vaccines or something in vaccines, such as mercury via the preservative thimerosal, can be linked to autism has received a great deal of attention, due in no small part to the efforts of various organizations who advocate for so-called "vaccine safety" and who claim that autism is actually "mercury poisoning." The scientific evidence continues to refute these hypotheses, and also to suggest that different combinations of factors can be linked to different manifestations of autism spectrum disorders.

In the end, focusing on what causes autism diverts attention away from considering issues of pressing concern to actual autistic persons and their families today, such as housing, employment and long-term supports for individuals who will need such.

8. Fear of vaccines.

If there's no valid scientific evidence to support a link between vaccines and autism, why is there so much talk about such a link? And why are so many parents of young children worrying about vaccinating their children, instead of worrying about the serious infectious diseases their children could contract (such as measles, which has been reported to be at its highest levels in the US this year) if they do not receive their vaccines? Consider some of the most-discussed topics about autism in 2008: the case of Hannah Poling, a Georgia girl whose "symptoms of autism" were aggravated by vaccines, as conceded by the US Federal Court of Claims in April; celebrity Jenny McCarthy's "campaign" to "green our vaccines" and make vaccines "safe," the approximately 5000 lawsuits in the "Vaccine Court" filed by parents claiming that vaccines or something in vaccines caused their child to become autistic; the charges of questionable medical ethics directed towards Dr. Andrew Wakefield, whose 1998 announcement that he had found a link between the MMR vaccine and autism set off a public health scare about vaccines.

The notion that vaccines are somehow linked to autism has distracted energy and resources from other concerns in the autism community, such as issues of education, housing, and employment, with so-called "pro-vaccine safety advocates" continuing to keep the issue in the public consciousness in the face of more and more scientific studies refuting a link.

9. Social programs in theory vs. effectiveness in practice.

There are a number of social service programs available for people with an autism spectrum diagnosis, including vocational rehabilitation, independent living services, special education services, social security, and programs for people with developmental disabilities. These programs target a wide range of areas such as employment, education, housing, self care, and recreation. In theory, this sounds great, but in practice, such services are often wrought with controversy. Just a few of many unanswered questions are:

Eligibility: Are the people who need services actually getting them? Do the people in charge of services have sufficient understanding of autism to determine eligibility?

Accessibility: Is the process for getting and managing services accessible? Are the services given appropriate, safe, and accessible?


Inclusiveness: What is inclusion really, and should it be pursued at all cost? Are the necessary services for learning or survival available to people in all socio-economic brackets?


Effectiveness: Do services focus on life long health, or only provide crisis management? How can limited funds be used most efficiently and effectively?


Individualization: It's often said that "if you've met one person with autism, you've met one person with autism." Are services such as Individualized Education Plans really being tailored the students' particular learning needs, or are service organizations tied up instead in the rigidity of their own bureaucracy?

10. Who can represent autistics?

While it would be unheard of to exclude direct representatives of a given minority in an organization for racial or ethnic minorities--or indeed for people with a physical or sensory disability--many autism-related organizations do not include individuals with an autism spectrum diagnosis in their administration or policy. Some common arguments against inclusion are that autistic people wouldn't be mentally capable of representing their own interests, that any autistic person who would be capable must not be "really" autistic, or that it's not possible to find an autistic person who has the "right" ideology for the organization. Other organizations will include autistic people in token ways, such as allowing them to design fund raising material, but never in ways that have real power. Still other organizations simply continue to exclude autistic representatives without any explanation at all. Much of public policy made concerning autism issues is done without any input at all from autistic individuals.

While the contribution of parents and service workers is indeed relevant and valuable, the fact is that autistic people are currently in the position of "taxation without representation," "something about us without us," and systemic exclusion from having power in their own lives.


A few of the more interesting comments:

I was disappointed to read what Chew and Raymaker had to say about being distracted by those in the community that think there is a link between vaccine and autism. I certainly hope this point of view is not representative of the Obama transition team.

The photo of those two hands reminded me of the children that came to my pediatric office in the 1990's presneting with symptoms of having the skin peeling off their hands and sometimes feet, the latter being less noticeable. It wasn’t bothering them; it was bothering their parents who knew it wasn’t normal to have skin peel off your hands. All I could tell concerned parents was that this must have something to do with the body trying to rid itself of something that didn’t agree with it, but I was clueless at the time.

Years later I realized I was looking at mild cases of a clinical entity that had completely disappeared from the pages of medical textbooks. This was a mild form of Pinks Disease. Pinks Disease (Acrodynia) was the name given to a form of mercury poisoning young children developed in the first half of the 20th century after they had been given a teething powder that contained a chloride salt of mercury. It was very effective, because the mercury killed the nerve tissue in the gums of the teething babies. The skin on their hands and feet would peel revealing the pink new skin underneath. So, why was I seeing a mild form of Pink’s Disease in the 1990s?

I started to perform provocative urine toxic metal tests on the children in my practice, especially children with neuro-behavioral disorders. I found that most of the children I tested had abnormal levels of lead or mercury. In 2006, I was granted an audience at the CDC, specifically with James Pirkle, MD, PhD, Deputy Director for Science, National Center for Environment Health.

I presented my findings including showing how when the metals were removed affected children improved on neurocognitive function measures. Dr. Pirkle personally told me this was important work and many of his collegues voiced there concern to me that especially mercury levels were of great concern to them. It is an accepted fact that the umbilical cord blood level of mercury is so high in American babies that the impact on their intelligence is costing the US economy 8.7 billion dollars a year.

Regretably, Dr. Pirkle and his collegues do not set policy at the CDC nor do they control the purse strings at that agency. To say that those that do have control alos have a mixed agenda would be an understatment.

Regarding all those so often quoted epidemiological studies that have not shown a link between vaccines and autism, one must take a step back and have a little discernement. Those 15 well positioned studies in the literature do not prove that the vaccine-autism connection is a myth.

The Institute of Medicine’s final 2004 report on vaccines and autism recognized that without biological markers of autism subpopulations at risk, further epidemiology would not be helpful. In other words, they did not say that vaccines don’t cause autism—-since without knowing what autism is, science cannot determine what it is not.

It is highly probably that there are multiple autism(s) with multiple genetic and environmental triggers (mercury and pesticides being just two on the list).

This simple truth about autism greatly reduces the stastical meaning of even the largest epidemiological studies.

Clearly, there is post-vaccination encephalopathy, but what are the mechanisms? Is there any treatment? Can it look like “autism?” There are many unknowns here, as no concerted effort has been made to understand the scope of post-vaccination encephalopathy.

Since medicine does not understand post-vaccination encephalopathy, and we don’t know what factors could increase or decrease its incidence (thimerosal, aluminum, live virus combinations, diet/metabolic factors, multiplicity of vaccines, pesticides), it would behoove us all to find out, not pretend the problem does not exist or that it is a distraction.

We can now perform genetic screening to determine who may react poorly to smallpox vaccine—this strategy might also benefit children with genetic susceptibilities that cause them to react poorly to other vaccine.

This is much bigger than just autism, there are several studies linking vaccination practices to autoimmune disorders-- like the recent Manitoba study demonstrating that a short delay in DTP administration reduces the rate of asthma by 50% (Delayed DTP immunizations and the risk for pediatric atopy and asthma . Journal of Allergy and Clinical Immunology , Volume 113 , Issue 2 , Page S304 C . Johnson) and the AAN Neurology publication showing that one brand of HepB vaccine increases the risk of childhood MS by almost 3 times (Hernan, M. Neurology, Sept. 14, 2004; vol 63: pp 772-723.).

There is a void of randomized controlled trials to support the continued growth of the current CDC/AAP vaccine schedule, and parents are beginning to ask questions about the science and there is no science.

What do you think would happen if the man on the street learned that many live virus vaccines are contaminated with reverse transciptase and avian retro virus? What does that mean? It means that we are jabbing children with material that could cause viral DNA to be written into their DNA and cause cancer several years later.

We can go into denial about this but that doesn't change the reality. A fortress of denial surrounds this issue and I hope there is someone on the Obama staff that hasn't yet swallowed the Kool-Aid.

www.BodiesinRebellion.com was set up to help deliver this concern to the President Elect.

We have choice if we want the human animal to continue on this planet. We have to really think about what that means, because one cannot fool with Mother Nature and not take responsibility for doing so. While adaptable, we are a relatively fragile life form and have been rather blessed to survive on this wonderful planet up to this point, but the Earth will survive, and it will survive just fine without us on it. We are one of the newest species on this planet and as the saying goes, “Last one hired; first one fired.” This is our fate if we don’t wake up.

K Paul Stoller, MD, FACHM


This is written as if from a HF autistic angry adult...My son went from having incredible belly aches, tantrums, frustration from lack of being capable of expressing himself.To a very happy 2 year old. Just from diet and a few supplements. He is still autistic and I love him just as is..of course.. dont STEREOTYPE the parents that do seek alternative treatments to help their children
FEEL BETTER..HAVE LESS ANXIETY ETC " Helping their child be their best. Parents who choose to send their children to private schools in hopes their kids will be more successful..dont get frowned upon. Very negative article and I take offense

Posted by lisa lagey on 01/02/2009 @ 08:15PM PST

"To say that a "cure" is not desirable is to say that it is ok for all those who suffer from real and painful physical symptoms like chronic diarrhea, constipation, GI inflammation, headaches, etc.--it's ok for them to continue suffering and live in pain."

This is simply NOT TRUE. This is a pernicious strawman perpetrated by those who, for whatever misbegotten reasons, seek to deny autistic self-advocates and their allies their rightful role in policymaking about autism.

Treating these real and painful physical symptoms is essential -- but has nothing to do with autism.

The reality is that all too many of those on the autism spectrum who DO suffer from real and painful physical symptoms like chronic diarrhea, constipation, GI inflammation, headaches, etc., are not getting the treatment for those PHYSICAL MALADIES SEPARATE FROM AUTISM that they should be getting -- and that nonautistic patients stand a much better chance of getting -- because these things are swept under the rug of being "part of the autism", and either ignored, or inappropriately treated by purported autism "cures".

I think we have to insist that medical providers treat these physical maladies in autistic patients the same way, and to the same standards of care, that they are treated in nonautistic patients. Without quackery and without conflating them with "curing autism".

Posted by Phil Schwarz on 01/02/2009 @ 08:30PM PST