The truth about autism: Not toxic and not the enemy
March 18, 2007 by Kristina Chew, PhD
Filed under Health
There has been an often lively back-and-forth on a February 26th post I wrote, The truth about autism: It’s not toxic. This was the beginning of the post:
There is a lot of mythology, a lot of lies, out there about autism. According to Anne McElroy Dachel, an autism mother and a Generation Rescue “rescue angel,” the “really big lie about autism” is that better diagnosis is the reason for the rise in the prevalence rate of autism—1 in 150 among American children according to the latest figures from the CDC. I would rather say that, to claim that vaccines, and specifically the mercury-based preservative thimerasol cause autism, is misleading and potentially dangerous.
Even more misleading, though, is what Dachel suggests that autism is. In her February 25th op-ed, The Really Big Lie About Autism, Dachel characterizes autism is an “environmental neurological disorder” and singles out thimerasol as a culprit (not surprisingly, as Dachel is a member of A-CHAMP (Advocates for Children’s Health Affected by Mercury Poisoning). While (as I note below) she cites various statistics indicating a rise in the prevalence rate of autism, she does not otherwise refer to what autism is in her op-ed on the “really big lie about autism” except that it is, indeed, some kind of poisoning of children today by environmental toxins.
Autism, according to these sorts of theories, is actually caused by some kind of external, poisoning agent—by something that truly exists and can be pointed to and can be chelated out of an autistic child to “detoxify” that child. Autism, that is, is itself “toxic” and can be equated with toxicity.
This “toxicity” of autism is not meant metaphorically; thus do parents have children tested for substances such as heavy metals and mercury, and then give them various drugs and supplements, or utilize such products as infrared saunas and magnetic clay, shots, infusions, and so forth. (For the record, while we have not tried any of these procedures with Charlie, I know about them first of all not from what I have read or heard, but from talking to friends who follow these procedures for their autistic children.)
A comment of Kassiane’s stood out to me:
Big words I’m good at…metaphors, no…which is why being called toxic hurts. Because I’m not. I’ve seen the numbers. I have unusual brain structure & glucose usage. It’s not toxic, it’s DIFFERENT.
In a February 27th Washington Post article on labels and diagnoses, Kathleen Seidel, proprietor of Neurodiversity.com and mother of an autistic child, made a similar comment regarding attempts to link autism with mercury poisoning:
“’Some people say, ‘My child is a toxic waste dump.’ People don’t understand the stigma. I don’t want someone looking at my family member that way.”
Viewing autism as toxicity stems from a belief that autism is caused by some external agent. In contrast, to speak of autism as difference is to view autism as something intrinsic and integral to a person; as what and who a person is. When those who believe that autism is caused by such external factors as vaccines or thimerasol or environmental pollutants speak about the toxicity of autism, they mean this literally, not metaphorically. However, an investigation of their explanations of autism–of what it is, of how to treat it—reveals that metaphors of invasion and of warfare are entwined in their language. Further, the use of these militaristic metaphors and of a “war on autism” closely echo the metaphors used to describe two other diseases that have attracted much public notice in the late twentieth century, cancer and AIDS. The late Susan Sontag analyzed the metaphors we use to talk about these diseases in two essays, Illness as Metaphor and AIDS and Its Metaphors (1977, 1988). From the latter essay:
Where once the physician who waged bellum contra morbum, the war against disease, now it’s the whole society. Indeed, the transformation of war-making into an occasion for mass ideological mobilization has made the notion of war useful as a metaphor for all sorts of ameliorative campaigns whose goals are cast as the defeat of an “enemy.” We have had wars against poverty, now replaced by the “war on drugs,” as well as wars against specific diseases, such as cancer…………. the wars against diseases are not just calls for more zeal, and more money to be spent on research. The metaphor implements the way particularly dreaded diseases are envisaged as an alien “other,” as enemies in modern war. (pp. 98-99)
Compare the metaphors of war in these references to autism and in “ameliorative campaigns” to treat autism: There is the Combating Autism Act (CAA). Congress Declares War on Autism was the heading of an ABC news story after the CAA was passed in early December 2006. Autism must be defeated; autism “is four times more likely to strike boys than girls.” Autistic children are in need of being rescued. Some researchers are trying to figure out what “ environmental triggers” might be having an “increasing impact” on autistic children; “triggers” suggests that some attack by some kind of weaponry is being launched against a child. 
Catherine Maurice in Let Me Hear Your Voice: A Family’s Triumph Over Autism (1993) writes up her “battle plan” to begin her “assault on my daughter, an assault of love, with no holds barred” (p. 81). “If I had to batter her down, bend, break, and ravish her autistic self in order to get to that Anne-Marie spirit, I would so so,” Maurice writes, with reference to a sonnet by the poet John Donne, a “beloved” poem, his Holy Sonnet 14:
Batter my heart, three-person’d God ; for you
As yet but knock ; breathe, shine, and seek to mend ;
That I may rise, and stand, o’erthrow me, and bend
Your force, to break, blow, burn, and make me new.
I, like an usurp’d town, to another due,
Labour to admit you, but O, to no end.
………………
Except you enthrall me, never shall be free,
Nor ever chaste, except you ravish me.
Maurice cites Donne’s poem in the course of discussing Clara Claiborne Park’s The Siege: The First Eight Years of an Autistic Child; Maurice contrasts her own view of a “siege” as “something more forceful and invasive than the kind of respectful, patient waiting portrayed” in a scene when Park’s daughter is three years old (”I do not press…….I have learned to wait” (p. 50-51), writes Park). And the notion of a siege—again, a metaphor drawn the language of warfare—-is conveyed in the title of Bruno Bettelheim’s The Empty Fortress: Infantile Autism and the Birth of the Self (1967). Writes Bettelheim on an autistic child withdrawing into her or himself:
……he withdraws to an inner redoubt in an effort to survive within a totally frustrating environment [of a rejecting mother]. But no inner fortress has ever allowed for survival without help from the outside. The concentration camp prisoner who did not get help from others, or could not use it, was doomed. This is why I have said that autism begins as a breakdown in communication. (p. 78)
According to the title of Bettelheim’s book, the fortress, the “redoubt,” that the child has withdrawn her or himself into, is an “empty” one: Following his analogy, the child is seen as an empty shell, a blank-minded being, that “alien ‘other’” that Sontag refers, an enemy in a “modern war” that professionals and parents will campaign against to “defeat” and at least to “ameliorate.” (One autism organization indeed states that it is “aggressively” funding research to “accelerate the pace of discovery”; it is also said that the funding of autism research will “maximize return on investment”—funding the campaign against autism has the makings of a promising financial venture.)
We know so much more about autism than in the 1960s, than when Bettelheim’s ideas were prevalent. But it seems that they ways that we talk about autism—the language that we use—-has not changed much.
People and parents in particular draw on these metaphors of warfare against the external enemy of autism because that is what they feel is going on in their day to day life with an autistic child. Nonetheless, such metaphors can have harmful effects in and of themselves: “Military metaphors contribute to the stigmatizing of certain illnesses and, by extension, of those who are ill” (p. 99), Sontag writes. Describing autism as something to be combatted, fought against, waged war upon, done battle to; as some external, poisonous, unknown thing that has invaded not only one’s household but the body of one’s child turns life with autism into war, combat and a battlefield and the child with autism into the carrier of all that is to be fought against. And, as I wrote at the end of the post The truth about autism: It’s not toxic, whatever our views of autism aetiology,
The truth about autism is something far simpler, I think.
The truth about autism is our children who have autism—autistic persons themselves—and the daily round of joys and struggles that they go through, and that parents of autistic children try very hard to understand.
I thought it best I stayed out of that thread. My blood pressure can only take so much. However, it nicely illustrated (in the comments section) the popular and illogical theories and beliefs of the autism/mercury people.
This is one of the things in particular that pisses me off about the medicalisation of being autistic. My opinion is that the root of this combat talk, and that cure orientation is that too much control over the understanding of autistic states was taken by the medical profession (and that we allow the medics to do this sort of thing too much).
How do we invoke an extra effort on something then? Surely a War on Poverty was not an attack on the poor (although some liberals would disagree that conservatives do just that!)? Wars are society’s way of mobilization, I know it’s not right, but what other metaphor do we use?
I used to try the ‘Hate the disease, love the child’ . But that implies that A: it is a disease and B: you can separate it from the child. I can still say I hate the predicament that autism put me in, the same way I can say I hate the predicament that having that 5th child has put me in. But that is a distinction from hating what the person IS. I guess it doesn’t quite provide a sufficient distinction, does it? And I guess that’s where the terms War, Battle, Combat and, what’s really at the core of this discussion, the word ‘HATE’, are too strong and negative to be used.
Good topic, thought provoking, many facets and angles to explore…
Bill
Good post, Kristina. I use Catherine’s book as an example in my presentations too. It was often the first book everyone read about autism. Since her time, we have come to learn so much more about bias and discrimination in our referencing about autism.
“Wars are society’s way of mobilization, I know it’s not right, but what other metaphor do we use?”
Why must we always say that we are searching for peace by declaring war?
For me, what it all comes back to is the distinction between difference and disability. I see autism primarily as a different way of processing information. Disability, generally, is a difference that is not economically convenient. How do you combat the disability without doing so to the difference? My answer would be with environment adjustment and societal support, but again those cost money. So it’s easier (more cost effective) in the long run to homogenize everone.
Wars are society’s way of mobilization, I know it’s not right, but what other metaphor do we use?
I’m thinking that, as a society, as a whole, it’s really time that we ALL sat down and had a LONG conversation about that. War-as-metaphor and the fact that it’s the way we conceptualise things and mobilise ourselves. Maybe it’s about time we started coming up with other ideas, as a whole.
But that’s just me.
A thoughtful post Kristina. It wouldn’t surprise me if Bill “livsparents” comes up with, and blogs ideas that lead the non-autistic public towards more understanding.
Alright, I have the solution. I have to go back to the tsunami, but the only other time we have mobilization is during releif efforts. Of course this implies a disaster within the spectrum, but in a sense there is a disaster of services, of coverage, of awareness, of diagnosis. So we’ll change Combatting Autism Act to the Autism Recovery Enactment…ARE you ready?
what about civil rights metaphors???
I have been sickened by the fighting language used about autism since I first heard it & I’m glad to be part of re-thinking these metaphors. In fact, really like the idea of re-thinking all war metaphors. I have trouble imaging that anyone who views another person as toxic would not find their relationship with that person tainted by toxicity. I feel the same way about hating something about another person… I believe that the way in which we think of things frames our perspective on them. Why not let the love we feel for our children frame our perspectives on autism? Simple, elegant, effective…
I could use less “war-as-metaphor” talk about many issues — this is another post, but I’m not comfortable with the use of “fighting” and “going to battle” with a school district; of being a “warrior mom.” I have often felt like this, but I don’t think the results have been the best, at least as far as the relations we have then had with the district and, especially with the people who spend all the time with one’s child—the teachers and therapists.
One caveat about recovery, if I may—-too many resonances with the notion of “recovery” from autism?
Another topic: Instances where parents write “I wanted to wrest [wrench, etc.) the autism from my child”; as if “the autism” is a canker, a tumor, or some such that can be “taken” out of a child.
Hi Kristine
As you know I live outside USA. AS you know, I dislike the misrepresentation of my child as ” toxic waste” and descriptions like that. I also disagree with the idea of autism as a way of being for HIM. I consider that the problem is multiple here
a-Feelings about autism from parents ( very much related to the information they received, their cultural/educational background and familiar attitudes and how they develop / or not a journey of evolution to the acceptation and embracement of the human being the autistic person is)and how this view is related to many organization´s views.
b-Confussion of these feelings with the autistic person, sometimes- but surely not always. It is the consideration of autism like cancer that produces for me words like “fight” and “war”. For many parents , it is the comparison they received from doctors-any doctor they contact. I received this comparison from almost every doctor I contacted. We developed our own view because of familiar/personal interest.
c-The need of proper medical testing and. when positive such in my case, the need of knowledgeable doctors to treat concomitant medical problems=Mission impossible if your child is autistic.Fortunately, I found some different doctors .
d-The problem of the correlation with genes, in a polygenic sense. There would be no “cure for autism” how can you change every DNA of every cell? For now you can´t- and BTW, I am not interested on. In some way autism is part of my child, an untouchable part.
e-the problem of the true and real medical problems many autistic people of all ages can have- And my son has many concomitant medical problems (CMP) to his diagnosis. For me this is the treatable part, not of AUTISM per se but of the “autistic genetics” interaction with environment ( widely considered). In this way, I consider I am not “fighting” autism, I have not declared any war; I am struggling to heal the CMP my son has in a way he can be the best autistic possible. Surely and fortunately our approach has affected possitively and I hope will affect positively his life in terms of happiness and well-being.
Whatever the semantics- that BTW can be hurting for autistic adults and I understand this- the true situation is not going to change; the genetics is not going to change because the sequence of bases in the DNA is going to be maintained. BUT all the transcription, proteomics and metabolism related is for me the point and the epigenetic modulation of all these aspects is a field almost unexplored constructively in autism. Constructively in the sense of the avoidance of the CURE/CAUSES controversies per se.
Why autistic biochemistry is not more deeply studied in a way that environmental impact can be more properly understood and ameliorated if possible? Instead of declaring war to autism why do not to study respectfully how to help the best for the CMP autistic people of all ages can have- not based on drugs to calm down them? But neither to dismiss these CMP treatments (PROPER AND SAFE because there are very much to analyze about) because they can help to the life´s quality. At least the CMP treatments did, to my autistic child.
For me, this is a world of difference and it is a place where autistic adults and parents of autistic children- prone/interested in agreement with each other can find perhaps some space of meeting- and erradicating the CAUSE/CURE controversy FOR NOW as such because it has been a common – and this is a very negative aspect for me-issue. If this is possible I do not know- but another and different deffinition of mutual respect and view should be constructed if this kind of interaction is considered of some help or importance (for me it is important, but it is only a personal opinion).
Why do we need a metaphor at all?
We don’t need one for different ethnicities. I am Romanian, Croatian, some form of western Asian (a whopping 1/8 or so), some other eastern European stuff, and Autistic-American. On the census I actually DO put down Autistic as my ethnicity because it’s the culture I resonate with the most…only thing I got from the rest of it is the Transylvanian gift for gymnastics.
To have a combatting blackness, Asianness, wrong-variety-of-whiteness, whatever…that’d be unspeakable today. We look back in horror in history classes at what we did to native nations and to slaves & minorities (and the Irish, the wrong flavor of white…). So why is it so wrong to guess that in a century’s time, our descendants will see autism as culture, as religions are cultures, as ethnicity is culture, as Deafness is culture, as many other differences are culture…
and look back in horror and disgust on the war analogies?
Speech as a second language. There you go. There’s the services title, if we want to take it really far into culture.
And yes, I know there’s more to autism than that, I’ve been autistic a mighty long time…and I’m sick of fighting for the right to be who I am.
I’m interested in the metaphors used to describe autism because they do shape how people (especially those who do not experience autism first-hand, or who do not have an autistic relative) understand autism, whether they know it or not. Unfortunately it does seem that the metaphors, or images, or associations, that get applied to people are not those they would choose to use—such as those applied to Asians (mysterious, exotic….).
The war analogies ring particularly odd to me if one substitutes “autistic child” or “autistic person” for “autism.”
María, thanks for your perceptive commentary as always—your comment regarding doctors themselves using military and warfare language in regard to autism stood out to me. I think the use of metaphors of “fighting” illness and disease, and anything disabling, is pervasive in our language here in the US. As Charlie has grown older, I have come not to think of him “struggling with autism” so much as “struggling with the particular challenges he faces due to his needing to develop his visual-motor coordination and other skills, etc.”
Speech as a second language—I need to keep up my studies of the first one…..
“On the census I actually DO put down Autistic as my ethnicity because it’s the culture I resonate with the most”
I always want to right in “European American” because “caucasian” is such a silly word when compared to the other selections – but I like Autistic American even better!
Estée—-regarding Maurice’s book: It had a powerful impact on me when I first read it, in the months when we were learning that Charlie had autism. We were already thinking of doing ABA and the book impelled this. From the start, though, I had questions that always nagged at me and that I’ve only started to reflect on more fully now that Charlie is older: The claims of recovery and the use of pseudonyms never rang right (especially in reading Maurice’s later writing about her children in some of the ABA manuals she edited). The book was insufficiently honest, however much it might seem to be—-I have been rereading it carefully for the first time since those early years and plan to write more.
Kristina, it’s a joy to watch your insights evolve.
Keep letting me know what you think—–
I must agree with Maria. We need to develop a series of biomedical tests that can be run at diagnosis alongside pyschological tests. This way, we can find out if there is anything in the biochemistry that is out of kilter that we can manage to improve quality of life issues for both the person with autims and their families, carers, etc. We have lived with autism for twenty years and believe me, I am not looking for a cure nor am I an advocate of the toxic waste issue. I do believe, however, that my son has biochemical abnormalities that ought to be addressed, should have been addressed when he was diagnosed. He was the first person with autism tested for sulophation abnormalities and was positive for this, so I know he has a detox problem. With regard to heavy metals, I think he has the same load as anyone else, but has problems getting rid of them, hence there will be a build up. But I think (and this is a personal opinion for us only) chelation would be too much for him.
What I am really saying (I think!) is, let’s do the research and see if we can help to manage the pathways that have gone askew, for whatever reason, be it genetic or environmental. I know my son was normal for the firat two years of his life. Then he wasn’t. Simple as that. What made him ‘go’ into autism? That’s what I’m still trying to find out. I run an organisation in the
UK dedicated to research and support. We have the researchers and we have their dedication. What we don’t have yet is the funds. However, we have already funded several projects and will go on raising money till we get to the bottom of what is causing autism. My son has develoiped seizures. He cannot communicate with speech. He is hooked on DVDs. His routine must stay the same every day. For my son and others like him, there is a need for research and help. If other, mre able people with autism want to stay with it, I appeciate this. I’m happy for my son’s autism to remain. Just let me help him to cope in a world that he finds confusing and difficult to negotiate. That’s all I ask and sorry to get on my soapbox. I needed to say it all!!
Hi Quinoline Blue -
your child ‘has developed seizures’ – do epilepsy medications help control the seizures?
did your child talk during his first 2 years and reach developmental milestones – friendly, pointing , joint attention, chatty?
untreated or hard to control epilepsy can mimic or cause symtoms of autism. The epilepsy/autism connection is underplayed for some reason in research and treatment.
Kristina, what sorts of eegs did Charlie have if you do not mind my asking? sometimes eegs are hard to read and things are missed in a short eeg.
Quinoline Blue, thank you for writing in here—–I really appreciate your sharing your experiences about your son. About how old was he when he developed seizures? What other health issues has he had? And, could you give the name and a website for your organization; thanks!
Here’s another militaristic metaphor for you – “Huge army of autistic children and adults need federal help: committee” (report on the Canadian Senate committee’s report on autism treatment). The report itself is here
You are so right. We should not be treating the core problem in diabetes in children either. Love them for who they are!!! And why medically intervene in a child with cystic fibrosis to support optimum health? Let it be. Seriously folks….if there is something physiologically going on with a child that can be assisted to enhance their learning and skills to live why wouldn’t a parent look into it? I don’t think any one of those parents are saying not to accept people for who they are, but are trying to help their children by looking at an entire picture when they attempt to assist in their mental and physical health.
Furthermore, I have also read Catherine Maurice’s book. I can see some of your opinion on the metaphors, but I think she was being truthful to the reader about her personal journey. And as much as you or another person might not like her analagies I found her to be honest and insightful. I believe many people can relate to her approach.