Why Parents of Children with “Medical Autism” Should Support Neurodiversity and the Anti-Cure Movement

Autism acceptance has been slowly gaining a bit of ground in the popular discourse (although one wouldn’t know it from the Congressional autism hearings, nor the coverage of the DSM revisions). We’ve gone from a movement that can be dismissed out of hand to one whose arguments have to, at least at some level, be engaged. Still, we’re at an enormous rhetorical disadvantage by not being allowed to define our own language, and some of the language floating about seems as if it were crafted to thwart us. One such rhetorical stumbling block, which has lately been dividing the autistic self-advocacy community from parents of autistic children, natural health advocates, and even fellow psychiatric survivors, is “medical autism.”

“Medical autism,” for those who believe in it, is a condition (usually induced by some external factor, like an adverse vaccine reaction) which causes a variety of symptoms, including seizures, allergies, chemical sensitivities, dyspraxia, indigestion, constipation, diarrhea, chronic pain, and chronic fatigue. The existence of this condition is a common point of conversational derail between anti-cure autistic people and pro-cure parents of autistic children. David Kirby attempted to link the condition to “severe” or “low-functioning” autism, which I argued against once before, but even separated from the high/low-functioning dichotomy, the concept remains contentious. Pro-cure parents often accuse autistic self-advocates of stifling their attempts to relieve their children’s illnesses, or suggest that if we were afflicted with the same kind of “medical autism” that their children are, we would wish to be cured, too. There are a couple of flaws in this assertion:
First, many anti-cure autistic self-advocates do, in fact, experience (and suffer from) seizures, migraines, chronic pain, allergies, and autoimmune illnesses–we just don’t tend to classify those things as “autism.” I would venture that to a person, when autistic self-advocates speak of accepting, and not wishing to be cured of, “autism,” we are not including physical illnesses in the to-be-accepted-and-not-cured category. We are using the term “autism” as most clinicians do, in reference to certain cognitive, behavioral, and personality-related characteristics (which, for the purpose of this post, I will refer to as “cognitive/behavioral/neurodevelopmental autism”): repetitive behavior, perseveration, hyperfocus, linear thought, asynchronous development, detail-specific focus, intense feeling, and an uneven pattern of ability. It’s a condition with several well-documented disadvantages, but several advantages as well, and many of us are quite attached to it.
Second, it’s unclear why the concept of “medical autism” is necessary, as non-autism-specific terminology already exists for these physical conditions. Illnesses and adverse reactions to foods and other substances are called allergies or sensitivities. Tendency to seizures is called epilepsy or seizure disorder. Chronic “gut issues” are called IBS or indigestion or colitis or reflux. As not all autistic people have these conditions, and not all people with these conditions are cognitively/behaviorally/neurodevlopmentally autistic, I’m not sure what benefit there is to grouping all of these conditions in with cognitive autism under the “medical autism” umbrella, rather than simply saying “she is autistic and epileptic” or “he has autism and IBS.”

Nevertheless, “medical autism” has gained a certain degree of currency among parents of autistic children, and it can make autism discussion very slippery. Many parents accept their children’s cognitive autism, even becoming offended if it’s suggested otherwise, but support autism-pathologizing organizations and campaigns out of concern for their children’s “medical autism.” Because autistic self-advocates rarely use the term “autism” to describe physical illnesses, we may be perplexed when parents say things like “Of course I don’t want to change my child’s personality! I just want to cure his autism so he won’t have seizures and diarrhea anymore.” But let’s assume that such a parent is telling the truth about her own goals. Even so, supporting policies, organizations, and campaigns which pathologize cognitive/behavioral/neurodevelopmental autism should be recognized as harmful and counterproductive to the goal of awareness (or treatments or cures) for “medical autism.”

Is “medical autism” even on the agenda of autism-pathologizing organizations?

Autism Speaks, the largest autism-pathologizing organization, mentions “autoimmune” or “autoimmunity” 62 times on its website. Over two-thirds of these references are concern autoimmune issues as a potential cause (or “risk factor”) for (cognitive/behavioral/neurodevelopmental) autism, not as conditions meriting treatment in their own right, and certainly not as conditions meriting treatment instead of treatment for cognitive/behavioral/neurodevelopmental autism. “Seizures” gets 129 mentions, the majority of which concern the recognition of seizures in cognitively/behaviorally/neurodevelopmentally autistic children, or the use of seizure medication for the purpose of reducing the traits of cognitive/behavioral/neurodevelopmental autism. “Allergy” gets 75 mentions. “Migraine” gets a scant 6 mentions, all of which merely list migraines as one of several “associated medical conditions” of (cognitive/behavioral/neurodevelopmental) autism. “Gastrointestinal” gets 159 mentions, most of them in the context of GI conditions as contributing factors to autistic behaviors.

By contrast, the AS website mentions “behavior” and “behavioral” a full 4937 times. “Development” and “developmental” get 3776 mentions. “Neurological” gets 455. “Cognitive” gets 740. “Repetitive” gets 281. “Emotional” gets 748. “Speech” gets 3196. “Social” gets 5637. “Deficit” gets 464. “Communication” gets 2416. “Obsession” and “obsessive” get 81. “Wander” gets 68.

This would indicate that Autism Speaks is very concerned with pathologizing and treating (and ultimately preventing and curing) the way autistic people think and behave, and only concerned with physical illnesses suffered by autistic people insofar as it pertains to this goal. Therefore, a parent who is sincere in her assertion that she does not wish to change her autistic child’s personality, only to alleviate his chronic illnesses, should not find Autism Speaks representative of her beliefs.

The Autism Society of America is less overtly pathologizing than the other autism organizations, but is still mainstream, well-respected, and broadly within the medical model. ASA mentions “autoimmune” or “autoimmunity” 15 times. “Seizure” is mentioned 31 times. “Migraine” is mentioned once. “Allergy” gets 31 mentions. “Gastrointestinal” gets 28.

And “Behavior” gets 297 ASA mentions. “Cognitive” gets 67. “Development” and “developmental” get 379. “Neurological” gets 56. “Sensory” gets 175. “Social” gets 333. “Deficit” gets 80. “Repetitive” gets 51. “Obsess” and “Obsessive” get 19. “Speech” gets 124. “Communication” gets 237. “Emotional” gets 72. “Wander” gets 18 mentions. So the ASA, too, is more concerned with autistic personality and behavior than with chronic illnesses.

But Autism Speaks and the Autism Society of America have actually been criticized by other pro-cure parents and organizations for their lack of attention to biomedical issues, so let’s look at how more pro-biomed autism-pathologizing groups compare. The National Autism Association is an autism-pathologizing organization which competes with Autism Speaks by offering a more biomedical-centered approach (and by depicting autism as even more of a tragedy than Autism Speaks does). NAA has a smaller website than AS does, so search results will not be comparable, but can still illustrate focus. “Autoimmune” and “Autoimmunity” are mentioned 6 times by NAA. “Seizure” is mentioned twice. “Gastrointestinal” is mentioned 3 times. “Migraine” gets no mentions.

“Behavior” gets 22 mentions. “Emotional” gets 5. “Cognitive” gets 2. “Sensory” gets 7. “Speech” gets 9. “Communication” gets 10. “Repetitive” and “obsess” get 1 each. “Wander” gets 37. “Development” gets 21. “Social” gets 10.

So although NAA is a much smaller website than AS, and is more biomedically focused, they still devote considerably more focus to pathologizing cognitive/behavioral/neurodevelopmental autism than to addressing co-existing chronic illnesses.

Moving on to Generation Rescue, another biomedical-centered organization. Their site mentions “autoimmune” and “autoimmunity” 13 times. “Seizure” gets 11 mentions. “Gastrointestinal” gets 25. “Migraine” gets 2. “Allergy” gets 22. Significantly, not all of these mentions pertain to autism specifically, unlike those of AS and NAA.

However, Generation Rescue gives “behavior” 73 mentions. “Cognitive” gets 17. “Emotional” gets 22. “Development” gets 73. “Neurological” gets 14. “Sensory” gets 32. “Speech” gets 31. “Social” gets 48. “Repetitive” gets 10. “Obsess” gets 10. “Communication” gets 21. “Wander” gets 5. “Deficit” gets 12.

Finally, let’s look at Age of Autism, a larger organization with a large website which more seriously competes with Autism Speaks with a biomedical focus. AoA gives “autoimmune” and “autoimmunity” a startling 496 mentions. “Seizure” gets 497. “Migraine” gets 37. “Gastrointestinal” gets 376. “Allergy” gets 189 (excluding the advertisements). Like GR, and unlike AS and NAA, AoA discusses autoimmune, epileptic, allergic, and gastrointestinal disorders as medical conditions in their own right, not merely as contributing factors to cognitive/behavioral/neurodevelopmental autism.

But AoA also gives “behavior” 494 mentions. “Cognitive” gets 336 mentions. “Emotional” gets 494. “Sensory” gets 413. “Development” and “developmental” get 503. “Repetitive” gets 167. “Obsess” and “obsessive” get 146. “Speech” gets 509. “Social” gets 519. “Deficit” gets 192. “Communication” gets 505. “Wandering” gets 88.

I don’t claim that my method is scientific or exact, but I do believe these numbers show that, despite many pro-cure parents’ claim that they don’t want to change their autistic children’s personalities, only to cure the chronic illnesses they insist on referring to as “medical autism,” the autism-pathologizing organizations they support devote significantly more ink to pathologizing autistic cognition, behavior, and personality than they do to chronic illnesses.

This presumes, of course, that parents who say that they have no interest in treating or curing their children’s cognitive/behavioral/neurodevelopmental autistic traits are being completely honest about their desires, but there is another possibility: some parents may be completely truthful in stating that their primary concern is their children’s chronic illnesses, but they may also hope that when their children’s medical conditions are successfully treated, their autistic behaviors and personality traits will lessen as well. This is clearly a mindset encouraged by all of the autism-pathologizing organizations. However, this, too, is flawed. Pathologizing cognitive/behavioral/neurodevelopmental autism actually worsens the medical treatment that autistic people receive. Autistic adults receive worse health care–medical, not psychiatric, healthcare, mind—than non-autistic adults. The pathologizing deficit model worsens this. Autistic people are even denied lifesaving organ transplants, based largely on the false beliefs that autistic people are mentally incompetent and have poor quality of life—falsehoods promoted and perpetuated by autism-pathologizing organizations. Disabled people in general receive worse health care than do typically-able people; developmentally disabled people in particular. The same is true of people with psychiatric labels.

When people have their personalities, cognition, and behavior pathologized (as all autism-pathologizing organizations advocate doing to cognitively/behaviorally/neurodevelopmentally autistic people), the pathologized people will be perceived as less competent, less credible, and less valuable. This manifests itself in healthcare just as it does in education, employment, and other fields. Anecdotal evidence of autistic and other neurodivergent people having their physical illnesses dismissed is rampant. How many of us have reported medical symptoms to doctors only to be told that we must be depressed or anxious? Or had injuries dismissed due to unusual pain response? Belief that the mind is defective results in less attentiveness to the needs of the body, not more.

If your autistic child has a chronic illness that you call “medical autism,” don’t be fooled into thinking that organizations that seek to cure “autism” take any interest at all in your child’s illness, or that pathologizing your child’s personality will increase the quality of physical health care he receives. Instead of an autism-pathologizing organization, to support research and treatments into chronic illnesses that disproportionately affect autistic people, please support organizations such as these:
Epilepsy Foundation
American Autoimmune Related Diseases Association
International Foundation for Functional Gastrointestinal Disorders
Digestive Health Alliance
About IBS
Food Allergy Initiative
Asthma and Allergy Foundation of America
Food Allergy and Anaphylaxis Network
Migraine Research Foundation
Alliance for Headache Disorders Advocacy
CFIDS Association of America
Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy
National Fibromyalgia Association
National Fibromyalgia Research Association
Crohn’s and Colitis Foundation of America
American Celiac Disease Alliance
PANDAS Network
Arthritis Foundation
National Multiple Sclerosis Society
Lupus Foundation of America
Multiple Chemical Sensitivity Referral and Resources

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7 Responses to Why Parents of Children with “Medical Autism” Should Support Neurodiversity and the Anti-Cure Movement

  1. adkyriolexy says:

    Tangential Side Note: Based on nothing at all except anecdotal observation, it seems to me that, for whatever it may be worth, “gut issues” is the one aspect of so-called “medical autism” that genuinely seems to be more prevalent in autistic children than in autistic adults. In a roomful of autistic adults, you’re likely to see a high rate of seizure disorders, autoimmune illnesses, chronic pain conditions, allergies, and migraines, but not nearly the rate of gastrointestinal problems that parents of autistic children describe. Whether this is because GI problems are often outgrown before adulthood, or because GI problems are over-diagnosed in autistic children, or because they’re under-diagnosed in autistic adults, or because there has been a genuine increase in these conditions in the past generation (perhaps due to an environmental factor, like food additives?) is a matter on which I would not hazard a guess.

  2. Lucy B says:

    “the autism-pathologizing organizations they support devote significantly more ink to pathologizing autistic cognition, behavior, and personality than they do to chronic illnesses.” This is fascinating. Your methodology is valid grounds for making the argument: Much Like. 🙂

    There’s a lot of evidence that developmentally disabled people receive worse health care and have worse health outcomes (shorter lives, more illness, more unmet health needs) than the general populartion, for a whole lot of reasons including providers’ negative assumptions and judgments related to the disability.

  3. Ib Grace says:

    This was a great idea for a post! And a great list of organizations that deal with real medical issues. ARGH to the migraine and autoimmune!

  4. Just discovered this post and love your explanation. Thank you.

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