Autism Is Not Toxic

“……parents who bear the emotional burden of caring for a disabled child in a world seemingly devoid of answers, just want clarity, and unfortunately the only thing that’s clear right now is science does not yet know the absolute cause of autism.”

as Suzi Parrasch wrote at the end of a recent post, Autism and Vaccines: The Public Debate Rages On (a post in which she kindly cited a recent post I wrote on the discredited “link” between vaccines and autism). While my husband, James Fisher, and I have been able to find a way to help our moderately to severely autistic adolescent son, Charlie, it is the case that much about autism, such as what causes this neurodevelopmental disability, remains yet unknown. And yet, over the course of more than 12 years of raising Charlie, why he is as he is has given way to other concerns, including the need for appropriate schools and services for him, for (when he’s an adult) a job and housing. When the “cause question” comes under discussion in our household these days, we’re more likely to remind each other to “look in the mirror,” and note our families’ histories of various “disorders,” “conditions,” and “differences.”

Do Toxins Cause Autism?,” an op-ed by Nicholas Kristof that appeared in the February 24th New York Times, puts the “cause” question at dead center. Kristof’s earnestness at inquiring into the potential environmental causes of autism, and specifically about chemicals such as phthalates that an unborn child may be exposed to in the womb, is commendable. However, as scientist (and parent of a child on the autism spectrum), Emily Willingham writes on her blog, we had best exercise some caution when discussing autism and environmental chemicals:

“What we need to be careful about is talking about any links as established before the work has even been done. Nicholas Kristof in The New York Times tries to make this argument, but I’d call it a big fail from the get-go, as the headline itself is a screaming warning of “Do Toxins Cause Autism”? Aren’t we just now trying to recover from the leading headlines relating vaccines to autism?

“Kristof states, and he’s right, that “these are difficult issues for journalists to write about…Evidence is technical, fragmentary, and conflicting, and there’s a danger of sensationalizing risks.” It’s quite true. The studies of the effects of these compounds in humans are mindboggingly complicated, with endpoints that may be under the influence of a host of confounding factors. And once again, we can’t hypothesize an influence of any environmental factor as being an actor in the rise in autism rates unless we’ve established that the rise is genuinely an autism increase, rather than an increase in diagnostic accuracy. And the jury is still very much out on that, although most evidence points to the latter explanation as valid.”

Kristof refers to autism as a “frighteningly common affliction” that is among “development [sic] disorders” that “constitute a huge national health burden.” Again, as a parent of an autistic son, I much appreciate Kristof’s concerns. However, his alarmist language and his suggestion that taking care of individuals on the autism spectrum is some sort of “burden” for our nation are not “just semantics,” but point to some misperceptions about autism and about what life with an autistic individual are like. 

Kristof also writes that autism and “other development [sic] disorders” have “proliferate[d]” in recent decades “along with certain cancers in children and adults.” This sort of statement suggests that autism is like cancer, that autism is some sort of illness. But as I wrote in a previous discussion about autism and cancer

“The purpose of comparing the autism rate to that of childhood cancer and other diseases is to convey how pervasive autism has become (or seems to have become). An unfortunate side-effect is that some say that having autism is worse than having cancer. …….
“One argument offered for why “autism is worse than cancer” is that people with autism live a normal life-span, and so have to live with this awful disorder for their whole lives: These notions assume that living with autism is so awful that it’s tantamount to a fate worse than death.”

Mentioning autism in the same breath as toxins and cancer suggests, by association, that autism is “toxic” and a sickness, and the individuals with autism are “damaged,” “sick” and in need of a “cure.” 

Kristof is not alone in portraying autism as an illness caused by toxins, nor is he alone among journalists in zeroing in on such environmental factors as a cause of autism. He suggests that, as a journalist, it is something of his duty to point out potential environmental threats to our children’s health. But focusing only on such factors, on a “cause,” diverts attention from the very pressing, urgent needs of individuals on the spectrum and those who are for them, of supports and services and schools, of jobs and housing. 

As self-advocate Ari Ne’eman writes in a recent essay on autism advocacy in Disability Studies Quarterly, “the traditional priorities of autism advocacy… focus on eliminating the autism spectrum”—via finding a “cure,” for instance—rather than on “pursuing quality of life, communication, and inclusion for all autistic people.” We need, Ne’eman argues, to “reset” our priorities, in order to truly supports individuals with autism. Autism is a lifelong disability and what’s especially needed are reports not of harried parents desperately seeking a cause, but of the day to day struggles, challenges, and good times (yes, these do occur) that are part of living with and as an individual on the spectrum.

Photo by AdamSelwood.
Kristina Chew, Ph.D., Assoc. Professor of Classics at Saint Peter's College in New Jersey. Since 2005, she has been blogging about autism, disabilities, and education, previously at Autism Vox and now at We Go With Him, a daily journal about life with her 12 1/2 year old son. She has recently published essays in Disability Studies Quarterly and in Gravity Pulls You In: Perspectives on Parenting Children on the Autism Spectrum (ed. Kyra Anderson and Vicki Forman).


Agnes O.
Agnes O7 years ago

Not be born on spectrum any longer?? You want a form of genocide? There is nothing wrong with being on spectrum. We are just different, and most of us do not want to be like the "normal" population.

No, autism does not require a cure. Maybe some of your so-called neurotypical behaviours do need a cure though - like the hours of social chatting wasted in offices when work could be done. The mobbing and bullying done by you oh so social creatures.

And from what I noticed, "normal" people cannot survive independently at all. There is all this constant need for company and friends and social events.. ack. Treat them for that and make them self sufficient, will ya?

NO ONE can truly be independent in today's society anyway.

Kristina C.
Kristina Chew7 years ago

Finding employment is something I worry about a lot for my son, who so thrives on the routine of school and being busy, as you describe your son; I know he'll need something to 'replace' it when he is older.

I'm sure you've already looked into all these, but what are the resources like where you are now, for individuals with disabilities? And apologies if my question seems out of place; I have heard a fair amount of stories like your son's, and know we have to do much much better by individuals on the spectrum.

Deb G.
Deb E7 years ago

It doesn't matter to the ones who are living with the spectrum now what caused it. It is how they are, and they need help learning to deal with life as it is for them, not what caused them to be different. Hopefully, research will yield an answer so that people will not be born within the spectrum any longer but, what we really need are more answers about coping with the spectrum in a world that keeps trying to treat those on it as if they are just fine.

Lori K.
Lori K7 years ago

My 26 year old son was finally diagnosed with Asperger's Syndrome at the age of 16. Until that time his life was a mystery.

Why was he so incredibly smart? Why couldn't he make a friend? How could he do Algebra problems in his head (in 1 second) or always pick the winner of the Kentucky Derby, but not get through the day without massive blowups?

Putting a name on his issues did not make them any easier to deal with, but at least it validated them. Until then he was labeled spoiled, manic depressive, bipolar, you name it.

Working with an excellent psychiatrist helped our entire family. We learned how to modify our behavior to avoid escalating him when he was angry. We learned how to get his cooperation, so he would do the things we asked him to do.

Still, he is on full disability. He cannot get a job, he dropped out of college, he can't keep a friend. He knows he is different, but he cannot figure out how not to be. He wants desperately to be more like other people, but it's not going to happen.

I don't know why it is called "high functioning" autism: if you have no social skill, you cannot function. He feels as though his life is a living hell, and all the therapy in the world doesn't seem to help. I love him, but he can't accept help from me, or his father, or anyone else.

When somebody comes up with therapy that helps those with autism feel normal, (even if they remain highly unique) it will be a huge breakthrough for them and for their families.

Mervi R.
Mervi R7 years ago

Interesting, thanks...

Mary C.
Mary C7 years ago

Nice post Kevin L...

I want to know whose children gets the 'resources"?? Mine sure is not.

Kevin L.
Kevin Lowe7 years ago

While phraseology might not be nice, it is a fact that some of those with autism do consume societies resources in their support and nurturing. In no way would I advocate withholding those resources! But it is a fact and so autism itself, rather than the individuals who have it, is a burden on society. It is also true that autism is not just a "difference" when it means that an individual can not survive independently. And so autism IS a condition requiring a cure. It is also right for some to focus on the search for the causes as long as society makes resources available to treat those affected today. If anyone who concedes that their loved-one has difficulty with every-day life, could give them a 'cure' that made them functionally normal, would they not? We must also try to ensure that future lives are not restricted and so search for the causes.

Rev Dr Kaye Skinner RN
Rev. Dr. Kaye S7 years ago

My prayers for more funding for research.

Kristina C.
Kristina Chew7 years ago

thanks to Heather A. and very best wishes to your brother and his friends.

Mary C.
Mary C7 years ago

Autism is a blessing???