On Autism

I read something disturbing over at Respectful Insolence today. The father of a little girl with autism has taken to all manner of nonsense to try to “fix” his “toxic” daughter.

I am officially done feeling sorry for these parents. And here’s why.

Conventional treatments for autism include behavioural therapy, and depending on comorbid conditions and symptoms, some medications.

The “alternative” therapies in this case? Repeated chelation-provoked urinalysis, stem cell injections into the lumbar spinal CSF, eliminating gluten from the diet, measuring excretions for metal, nifty gadgets like the Doctor’s Data Lab, lipophilic detoxification, EDTA and glutathione pushes, stress detoxification systems, and graphing the progress of all this — because if it’s in a graph, it’s science.

If any of these barbaric, torturous treatments were magically legitimate (for the sake of this argument) and were practiced within “Western medicine” you better believe, as one commenter said, that “the AoA [Age of Autism] people would be up in arms about the ‘torture’ of ‘allopathic’ medicine!” They sure would. And vaccines are toxic? Right.

I understand that having a child with a disability is hard (as much as I can, not being in that situation myself but seeing it second-hand through my job). I understand that this can be a great stress on parents and families as a whole. Sometimes people get divorced due to the strain. Sometimes parents develop depression and anxiety because of the child’s frequent and special needs.

But one of the worst things about these sorts of parents specifically, is that they seem unwilling or unable to accept their children as they are within the context of caring for their needs. They seem more interested in changing them to make them more “normal” and when that inevitably fails, they continue to see their child as “broken”, to be fixed with any tool available one after another. This attitude is profoundly dehumanizing to autistic people. All of the time spent with these misguided attempts to fix their kids is time not spent getting to know them and time not spent helping them with established effective treatments.

[Keep in mind that I’m not saying that they don’t love their children. That is absurd.]

Children with autism can be helped, but they are not “toxic” or “broken” kids in need of “fixing” with frequent invasive “treatments”. Putting these kids through all this twice victimizes them — 1) they are associated with a stigma of disability and 2) it is assumed that they will never be happy, and their family will never be happy, unless they can become “normal”.

At first I thought “It’s hard. I get that they are just trying to do their best for their child, however misguided” but then I stopped to think about the motivations of these particular people. It is a subtle distinction that ignites my wrath. Rather than provide as much adaptation as possible for the child to reduce strain in daily activities (accepting the fact that the child may always live with some level of disability), they strive to fix them no matter what the necessary endurance as long as the child comes out 100% normal as compared to other kids in their age group. They are not doing this necessarily maliciously, but it is certainly awful.

And that is why I no longer feel sorry for these parents. I do not approve of their coping mechanism, I do not approve of the way they dehumanize their children, and I do not approve of torturing kids who are already dealing with hardships associated with the sometimes challenging nature of autism.

There are countless parents of autistic children that work just as hard to do what they have to do to accept their child and help them overcome their challenges, all the while realizing that their child is an individual with individual needs who is not toxic, but rather afflicted with a neurological disorder. Would we subject children with cerebral palsy to this nonsense? Why do we continue to torture our autistic children?

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6 responses to “On Autism

  1. God Hates Uranus & Other Random Stuff

    Hi,
    Just came over from the Bad Astronomy Blog. I agree with you on this, but, as the father of a disabled child, I can also understand the parental anguish associated with hearing that your child has a disability. In the case of my ex-wife and I, our daughter has Down syndrome and Cerebral palsy, and we were bombarded by individuals offering all kinds of ‘alternative’ therapies. Some promising to ‘reverse’ the unique features of Down syndrome, to make her more ‘acceptable’. Fortunately, we saw this for what it was, well intentioned, but grossly misinformed people.

    Unfortunately that misinformation can be dangerous, not only physically, but psychologically, to the child. I am convinced that many parents try these things, more for their benefit. I believe that they may be compensating for feeling guilty for their child’s condition.

    Thanks for tackling this subject. We need more people like yourself and the BA speaking out on this!

    • Kimbo Jones

      Hi there, sorry about not replying sooner. You happened to comment during a time of transition for the blog. In fact, I hope you find this. :)

      Although I do not deny that these parents care for their children, I do not condone the quest to “make them normal”. It’s a subtle distinction, but an important one for me.

  2. benandcoopersdad

    But … but … but Jenny McCarthy says she can fix my kid. (sigh)

    Well, the problem as I see it is that we’ve had so many problems with our pediatricians misdiagnosing and pushing us off, that a lot of parents would rather turn to woo than to the medical establishment. After my son regressed to nonverbal (over 7 months), it took another month and nearly a physical confrontation to convince our pediatrician something was amiss. A lot of parents have had similar experiences, and that track record has opened the door for snake oil sales.

    So parents don’t know whom to trust, and the woo pedalers promise to a pill to fix your kid, while science offers a lot of hard work to help enable your kid to meet the world.

    And you’re right. Parents have premade expectations for their kids, and no matter how much ABA you get, your kid with autism is very unlikely to be starting quarterback.

    But Jenny can fix him … (sigh)

    • Kimbo Jones

      “we’ve had so many problems with our pediatricians misdiagnosing and pushing us off”

      Consider the difficult position that pediatricians, especially, are in. They are assessing children on the basis of their parents report of their symptoms, as kids are sometimes not able to articulate their own symptoms, which makes diagnosis very difficult. Also, they don’t want to say something too severe to freak parents out, so without careful delivery this can come across as dismissive. Also consider that they deal with parents every day who care very much for their children and do flip out over nothing, so it becomes more and more difficult to tell when someone is flipping out for a good reason.

      I’m not at all defending doctors for crappy service, but we (patients and parents) need to remember that they are just people trying to do their jobs and they need our help and understanding as much as we need theirs. One of the mistaktes that the Jenny-type parents are making is that they are assuming that a crappy doctor means that medicine is all wrong.

      I hope you can find a good pediatrician who will work with you to provide the best care for your child. If that is difficult in your area, I suggest 1) talking openly with your pediatrician about your expectations for how they interact with you and 2) the role you expect them to play in your child’s care. You may find that clarifying everyone’s expectations reduces the need for confrontation. I would also suggest that you request a referral to an occupational therapist and a speech/language pathologist as soon as your child is old enough, as wait lists can be a nightmare.

  3. benandcoopersdad

    Thanks. We’re 4-yrs past that now, and have an exceptional pediatrician. Ben was in a research study at Kennedy Krieger before he turned 3, and it made all the difference.

    “[Pediatricians] deal with parents every day who care very much for their children and do flip out over nothing, so it becomes more and more difficult to tell when someone is flipping out for a good reason.”

    Yeah, I see what they’re up against, but what Jenny, etc. offer is that they’ll at least pretend to listen. Most parents in our local autism community have a similar story about how their first pediatricians simply weren’t educated about autism and ignored the parents’ pleas, kids’ regressions and other problems which seemed “obvious.” I’d like to think things are better now, but we all had to find new pediatricians or work with the school system to get help initially. (BTW, even lousy school systems are typically very good at determining a kid needs help, and getting that started).

    Anyway, Jenny says doctors are wrong, and parents are right, and it’s what a lot of parents want to hear. She’s taken root, and I’d love to know how to weed her out now.

    • Kimbo Jones

      Agreed. Peddling easy answers has the unfortunate effect of being way more appealing than what “big med” has to offer. And “big med” has the unfortunate blinders on that most people get when all they see is their job and can only filter things through that lens. I think part of weeding her out has to be that pediatricians become more aware of how they may be contributing to her popularity (even if it’s not on purpose).