VACCINES & AUTISM: Myths and Misconceptions: Interview with Roy Grinker, Author of Unstrange Minds: Remapping the World of Autism

[Guest guest]

http://csicop.org/si/2007-06/radford.html

VACCINES & AUTISM: Myths and Misconceptions Interview with Roy

Grinker

Author of Unstrange Minds: Remapping the World of Autism

BENJAMIN RADFORD

Radford has investigated ghosts, psychics, lake monsters, UFOs,

mass hysterias, and many other paranormal phenomena for over a decade. He is

the author or co-author of three books; his latest (with fellow investigator

Joe Nickell) is Lake Monster Mysteries: Investigating the World's Most

Elusive Creatures. His Web site is at

www.RadfordBooks.com<http://www.radfordbooks.com/>

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There are many myths and much pseudoscience surrounding the diseases now

called autism. Some have to do with vaccines, as the pieces by

Novella and Judelsohn discuss in this special section. Other myths

include the long-discredited practice of facilitated communication, in which

" facilitators " help illiterate autistic children type out words and

sentences—as well as occasional unfounded accusations of abuse. Yet many

myths and questions remain, especially related to the prevalence and

underlying diagnosis of autism.

In a new book on autism, Roy Grinker (a professor of anthropology at

Washington University and himself the parent of an autistic daughter)

examines the disease from a social and anthropological perspective. Here is

an interview based on his book Unstrange Minds: Remapping the World of

Autism.

*How did you first become interested in the subject of autism?*

I wear two hats. I am an anthropologist and the father of a child with

autism. So, as autism awareness grew, more and more people said, " So you're

an anthropologist, what does autism look like in other cultures? Is the

prevalence the same as it is here? What do people do about it? " I wrote

Unstrange Minds so that people can see that autism is universal and that

autism awareness is increasing everywhere in the world. But the most

important reason for writing the book—though this was not my original

intention—was to tell the world a simple message: the increase in autism

diagnoses is not a crisis but rather evidence that we're finally beginning

to address a kind of human difference that has for too long been

misunderstood, misdiagnosed, and mismanaged. More than six decades after

autism was first described by Leo Kanner, we're finally getting it right,

and counting it right.

*Why do you challenge the idea that autism is an epidemic?*

Because so many Americans and Europeans are in a panic that there is a true

epidemic, and that if there is an epidemic there must be some new,

identifiable cause out there somewhere to be found and eradicated. I thought

I could articulate some of the cultural and scientific reasons behind the

increase in rates and give a positive message: the higher rates are due to

positive changes in the way we understand and treat neurological and

psychiatric disorders.

*If autism is not an epidemic, how did it come to be viewed as one?*

Autism became viewed as an epidemic for the same reason there have been

fears of epidemics of other illnesses: there is a dramatic increase in

prevalence. But prevalence is just the number of cases counted at a

particular point in time and is not evidence of true increases in a disease.

The same happened with melanoma and prostate cancer. There were huge

increases in prevalence in those diseases, because they were being diagnosed

so much more (skin cancer, due to increased awareness and more biopsies of

early stage cancers; prostate cancer because of the invention of the

PSAblood test, as opposed to the painful method of inserting a tool

through the

tip of the penis all the way to the prostate). It really is confusing to see

diagnosis rates of three or four in ten thousand twenty years ago change to

rates of 1 in 150. On the surface it sounds frightening.

*So it's the public's lack of understanding about the methodology?*

I think scientists have not done a good job of explaining to the public that

comparing these rates is like comparing apples and oranges. The rates in,

say, 1980, were derived using a narrow definition of autism and using

administrative statistics (mostly numbers of kids enrolled in programs under

the category of " autism " ) at a time when autism was not a popular diagnosis.

Today's rates are derived using a very broad definition of autism (people

from the severely mentally retarded to people who marry and hold jobs and

may even be college professors) and using reliable and valid measurements

that have only recently been developed.

In Korea, where I'm doing an epidemiological study, we cannot even try to

use administrative statistics, because autism is unpopular as a diagnosis.

If you used the enrollment figures, you'd think autism was almost

nonexistent in Korea. Yet, we're finding rates not out of line with the rest

of the world. Second, the increased awareness has meant that people see

autism more—the decreased stigma has helped too, since people don't hide

their kids anymore. So it feels like an epidemic. But a feeling is different

from science.

*So what accounts for the apparent increase in the prevalence of autism?*

They are described carefully in my book: new epidemiological methods yield

many more cases; a much larger number of people are being diagnosed with

autism today because autism is a spectrum that can include the profoundly

mentally retarded person but also a brilliant scientist; more and more

physicians are giving the diagnosis and then kids are being coded in the

school system with autism (some epidemiologists who do records-based

research then rely on the school records for their information); people who

were once called mentally retarded or schizophrenic or a host of other

things are now being diagnosed with autism. There is no single factor among

all of these that trumps the others, but I think the least understood is the

change in epidemiological methods.

*What do you think are the biggest misconceptions that the public has about

autism?*

One misconception is that we need to have an " epidemic " to call attention to

a disorder. Some parents and philanthropic organizations have called me a

traitor and accused me of betraying the autism community. On the one hand, I

don't agree with the way philanthropic organizations have fueled the fears

of an epidemic. An epidemic is a useful fiction for fundraising. On the

other hand, the organizations do so much for autism awareness, research, and

services that sometimes I feel a little guilty, as if by telling the truth

some people might be less likely to give money. But that guilt is fleeting.

The reality is that (1) the higher rates mean that autism is a bigger public

health issue than we ever realized; and (2) there is nothing mutually

exclusive about saying there's no epidemic and at the same saying that we've

finally figured out what's going on with people on the autism spectrum, and

we need more research and services. I recently received an e-mail from a

parent who decried my stance: " How can you say there is no epidemic of

autism? " she wrote. " When I was in school, there were no kids with special

needs in my school. Today, in my daughter's school there are dozens. "

Actually, that is my point. In the past autistic people were not included in

our schools. Today they are. And that's a very good thing.

Another big misconception is that autism is somehow new. I am frequently

asked: If there is no epidemic, then where are all the adults with autism?

The answer is easy, but also complicated. Finding adults with autism is very

hard, not because they do not exist but because they are dispersed in our

society. Some live in group homes, others in institutions, others are living

and working among us in our everyday lives. Kids are easy to count because

they are all in school, neatly recorded in school records. But adults are a

different story. Counting adults with autism would be like trying to count

adults with speech and language disorders. You can count kids, but where

would we find the adults? So many people with speech and language disorders

don't get speech services as adults—they've learned to adjust, adapt, and

manage. No one " missed " or " ignored " autistic people in the past. They were

just called something else, or in some cases (like people with Asperger's)

called nothing at all.

An additional misconception is that an environmental factor equals an

environmental toxin. Environment probably plays some very small role in

causing autism, but environment can mean everything in the world, from

chemicals, to our diet and way of life. No environmental factor has yet been

identified by scientists to account for autism, let alone changes in autism

prevalence. Looking for environmental factors in autism at this stage in our

knowledge is really like looking for needles in haystacks.

*Why do you think the news media have engaged in such misleading and

alarmist coverage about autism?*

Fear, panic, and deep parental concern get a lot of attention. Compare the

two messages: " There's an epidemic and we don't know what is causing it! "

and " More people are being diagnosed with autism today because we understand

it better. " Plus, autism in the news is usually about autism in children

(despite the fact that autistic children grow into adults), and children are

very engaging as television, radio, and newspaper subjects. Advocacy by

organizations whose membership is convinced there is an epidemic caused by

an environmental toxin has been well funded and supported by politicians,

especially by politicians in the states with the most autism services (and

hence, because of those services, the highest rates of diagnosis).

*What has been the reaction to your book, both by medical professionals and

by parents of autistic children?*

The scientific community, from what I can tell so far, supports my work

strongly (e.g., reviews in Nature and the New England Journal of Medicine).

Much of what I'm saying about the reasons for the so-called epidemic has

been said before in scientific journals. What I've done is to put all those

arguments together and place them in a larger context of American social

change in a way that is accessible to a wide audience. The fact that the

book is being reviewed in both scientific journals and in the popular press,

such as People magazine, is an indication to me that I've succeeded in

reaching a large readership. Among parents of children with autism, the

reception has been mixed. Many, many parents find Unstrange Minds to be

inspiring because I talk about how many families in the world have turned

something potentially devastating into something uplifting and rewarding.

Others have sent me hate mail and left angry telephone messages on my

answering machine at work. I have been called every kind of name.

*What does the science suggest are the causes of autism?*

There are probably several different kinds of autism caused by several

different genetic pathways. There may be, in total, several dozen different

genes involved. Scientists at Cold Springs Harbor Laboratory in New York

have generated one of the most interesting genetic models, suggesting that

some cases are heritable, but usually over the span of a couple of

generations through a nonaffected carrier, and other cases are de novo

mutations. But the bottom line is: it is largely genetic, so much so that

environment probably plays [only] a small role. One way scientists estimate

the role of genetics in a certain disorder is to look at concordance of that

disorder in identical twins, that is, two people with identical DNA. The

concordance, or percentage of people with identical DNA who both suffer from

an autism spectrum disorder, is as high as 90 percent in some studies.

That's higher than the concordance for coronary artery disease, depression,

or breast cancer. Then, when the scientists look at fraternal twins, who

don't have the same DNA, they find a concordance as low as 0 percent and as

high as 10 percent. That makes ASD strongly genetic.

*If autism is partly genetic, should there be prenatal testing to determine

if a fetus is autistic?*

That is a huge ethical question, but perhaps it's premature. We know that

schizophrenia, bipolar disorder, breast cancer, and many other disorders

have a strong genetic component, but they cannot be tested for in the womb.

Multigenic complex disorders are very different from, say, Down syndrome,

which is an identifiable mutation in which there is extra genetic material

(a twenty-first chromosome), so it can be tested for. Autism is a totally

different kind of condition.

*In explaining how disease diagnosis is culturally dependent, you draw from

many cultures and countries, including the Navajo and family lines in China

and Peru. What are two of the most vivid examples in your mind?*

The Korean case is one of the most fascinating to me. This is a country in

which scientists and doctors and government officials have said that autism

is a rare or nearly nonexistent disorder in Korea. The school and clinic

records support that contention, because one seldom finds any mention of

anyone with " autism. " Autism, when it is diagnosed, is highly stigmatizing

because it is seen as a genetic disorder. If a disorder is genetic, the

family feels that the entire family is damaged, and this brings shame and

stigma. So parents would rather see themselves as bad parents who caused

autism in their child through bad parenting than see the disorder as

genetic. This is the opposite of what happened in the U.S., where mothers

and fathers used to be blamed, but we now see the disorder as genetic. At

any rate, I went into Korea with a team of epidemiologists and psychiatrists

and psychologists, and we have screened thirty thousand kids and done

extensive testing. And we're finding lots of autism. The kids just are not

called autistic. They are undiagnosed or diagnosed with something else. So,

in Korea, we're seeing a culturally different version of what has already

happened in the U.S. and higher prevalence rates in Korea are on their way:

not because autism is new as a condition, but because autism is new as a

concept.

[Guest guest]

Thanks Ari

That is very interesting.