the experts

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{image is a screenshot of Bill and Ted from Bill and Ted’s Excellent Adventure}

Dr William Acton.

Ever heard of him?

He was quite renowned in his day (his day being the mid-nineteenth century.)

In 1836, at the age of 23, Dr. Acton moved to Paris where he studied the functions of the generative and urinary organs under the American-born Phillipe Ricord, ultimately deciding to concentrate on gynecology. By 27, when he returned to his native England, he was already recognized as a preeminent expert in the field. He became a member of the Royal College of Surgeons. He wrote a book. He practiced gynecology for seventeen years. He wrote another book. And then another.

In his 1857 tome,  The Functions and Disorders of the Reproductive Organs … he wrote, “The majority of women (happily for them) are not very much troubled with sexual feeling of any kind.”

He also wrote, “As a general rule, a modest woman seldom desires any sexual gratification for herself. She submits to her husband’s embraces, but principally to gratify him; and, were it not for the desire of maternity, would far rather be relieved from his attentions.”

Wouldn’t you just love to go back and chat with Doctor Bill? Can you even imagine? I can. And for some reason, it’s very California circa 1989. Maybe because I figure we’d have to use Bill and Ted’s phone booth to get there.

Anyway, we’d all be like, “Um, dude, no. Just really, really no.”

And he’d be all, “But I’m a gynecologist and I have degrees and experience and I worked under that French guy and at that hospital in France and I’ve written books and studied female reproduction and I know stuff.”

And we’d be all, “Um, yeah, but I’m telling you, I know because … I … um, well … trust me … no.”

And he’d be like, “Perhaps you missed my credentials. I’m a member of the Royal College of Surgeons and I’ve been treating women for seventeen years and I speak on panels and write books and I KNOW STUFF.”

And then, because it would be time to end the madness, we’d be like, “DUDE, I have a vagina*.”

And then we’d totally drop the mic because what else could there possibly be to say, right?

Apparently not.

The following was that conversation. Except that it was real. And it took place two days ago. Which serves only to make it even more outrageous than anything that ever happened to Bill and Ted.

My friend M responded to a post online in which a doctor and “autism expert” had made an argument about autism that did not jive with his experience with autism as an autistic person. This was the doctor’s response, for all the world to see.

It seems that Ms. Kelter has a passion for words but otherwise possesses little knowledge to back the same. I am a Board certified Neurologist who also trained in Neuropathology. My focus of research is autism. This year I am directing a symposium at IMFAR regarding brain related abnormalities (in the migration of neurons) in autism spectrum disorders. I can tell you what is new in terms of understanding the brain, not Ms. Kelter. Not trying to be cynical or argumentative, just curious of how people lacking in knowledge and training dare to come with imaginative conclusion not grounded in reality. 

* emphasis mine

Ms. Kelter, who happens not to be a Ms., but my friend M.o Kelter, is autistic. His knowledge is as extensive as it gets. His training has been hands-on since the moment he emerged from the womb. And his conclusions are grounded in the reality in which he lives each and every day.

Dr. Acton had a lot of training. And a lot of experience in the field. And he was a whole lot of wrong about the actual experience of the vast majority of the people he studied.

The parallel matters.

What happens in a lab can be really important, but reality isn’t what happens in a lab. It isn’t rats or neurons or brains splayed open for study. Reality is the life of the human beings who live it. If we refuse to accept their experience because it contradicts our conclusions, then we need to reassess our conclusions, not dismiss their experience.

Experts, real ones, become experts by listening. Otherwise, you’re just a guy with a whole lot of training on a subject you actually know very little about.

* Editor’s note: My coupling of anatomy with gender identity here is not meant to be in any way, shape, nor form dismissive of non-cisgendered people. Please keep in mind that reproductive organs do not define gender. My intention was to use my own anatomy, which does happen to coincide with my gender, as an illustrative device in the post because I thought the word vagina might just be shocking enough to make the point. 

21 thoughts on “the experts

  1. Writers like MK are my go-to experts for my 10yo ds. I need them to keep speaking up! Their perspective is vital to my understanding. When I see an “expert panel” listed for a conference, the first think I now look for is an autistic individual, not letters after a name.

  2. What is so sad, is that the Doctor truly believes he is the expert, not even attempting to take into any account the actual experience of autistic people.

  3. Jess so very, very true.
    I have learnt a valuable lesson from you and those who share their thoughts and experiences…
    ‘Behaviour is communication’ which extends also to those who are verbal but do not understand that how they process the world is not the way everyone does. My son probably has auditory processing issues. I knew there was a missing piece. The “experts” focused only the physical stuff like his bendy joints. I knew there was something else.
    I spoke with HIM- slowly we are unraveling it and it has made a huge difference. Today he told me math is hard but not impossible.
    Thanks to everyone for helping me…Too long to explain in a reply but the shared experiences have helped so much.
    Peace

  4. While I agree that doctor is arrogant and dismissive, care needs to be taken when extrapolating from one person’s perspective (M’s) to that of the autistic community at large. What may be true in most cases (which should be what the doctor is presenting, if they’re any good at their job), may not apply to the individual. That doesn’t belittle M’s experiences, but it does mean that expertise and experience are not necessarily one and the same.

    • Agreed, but to dismiss (and discredit) the perspective entirely is very different from saying, “the perspective you offer does not sound representative of that of most of my patients / people with whom I’ve spoken.

    • if it helps, in my writing…and in the writing this neurologist is referring to…I never claim to be an expert or that my experiences are representative of any other person…I primarily focus on telling personal stories. his view is basically that only “experts” are qualified to speak about the spectrum and that autistics have no place in these discussions. it’s basically a turf war kind of claim, where his views are put on a pedestal and autistics are deemed irrelevant. there would be nothing wrong with someone disagreeing with any statement I make, or offering criticism or suggesting like you do that my experiences shouldn’t be generalized. that’s not what he’s doing…he’s insisting that only “experts” with the proper credentials should be able to participate in autism discussions. to be more specific, you’re making a distinction between expertise and experience…he’s making an entirely different argument, i.e. ONLY expertise (defined, basically, as certifications, credentials, etc) matter. which is nothing new, I run into this view a lot, I get that there are people out there who have no interest in the perspective of autistic writers. meanwhile, I think it’s necessary to reject this thinking and tell personal stories and weigh in and make sure that our perspectives are being incorporated into discussions about autism. doesn’t mean I can speak for anyone else. nor does it mean I should have to passively sit back and pretend that my own experiences are non-existent.

      • (which, I should add, is not a reaction to you, Joni, it’s a reaction to the feedback I receive on a regular basis to go away…what neurologist guy is saying here, it’s not an uncommon reaction)

  5. I read the person’s blog post – the title of his blog is pretty indicative of his attitudes in general. Add to that he screens replies to the post, not for truly inappropriate responses, but for DISSENT. If you don’t agree, your post is not put up there. The response to M was there, BUT M’s actual reply was NOT there. That says a lot about this person.

    I am considering writing to IMFAR about this person, because his lack of professionalism is alarming – and I wonder if they would be concerned as well.

    I hope the more neurodiversity aware professionals will soon outnumber the “know-it-alls”.

  6. “Reality is the life of the human beings who live it. If we refuse to accept their experience because it contradicts our conclusions, then we need to reassess our conclusions, not dismiss their experience.”

    My experience with your blog has been that while you believe that you are writing from the perspective of the majority, this is simply untrue. How do you feel your words impact those of us with children on the spectrum suffering with severe health issues? While I applaud your attempts at promoting neurodiversity and its all-encompassing acceptance, your insistence at focusing solely on that portion of the vast autistic community is not only an insult to those that do not view their child’s condition in that way, but also a deterrent for those of us fighting for funding and services that we do not have access to and desperately need. You are, in effect, denying OUR experiences when you choose that path. It’s unfortunate, because I have enjoyed your writing, but I believe I have come to the point in my son’s autism journey where your blog no longer applies to me and the part of the community that I represent. I represent the part of the community where the 9-year old is still in diapers, exhibiting self-injurious behavior, physically attacking his parents, and suffering from gastrointestinal issues that leave him in a state of constant pain. That is our reality – that is our experience. I have enjoyed reading about your daughter, and your whole family…but I am sad to say that it is time for me to go.

    • I’m sorry to hear that. I’ve always tried to make it clear that I believe that resources are desperately needed, but perhaps that hasn’t been as prominent as I’d thought. That said, I don’t believe that we ever need to invalidate anyone’s experience of the world in order to validate our own. M isn’t claiming that his perspective can or should be generalized, just that it is real and valid and should be part of the conversation, just as your son’s should, just as yours should. I hope that you find relief for your kiddo and I wish you well as you move forward in whatever direction is best for you all.

    • Also, I don’t believe that I am writing from the perspective of the majority at all. In fact, I’m very aware that I’m writing from no perspective but my own, which is very often in the very small minority.

    • Candi, if you haven’t already, perhaps visit Emma’s Hope Book. (emmashopebook.com) Do a search on “resources”. They have a list of non-speaking autistic bloggers, of many ages. You may find someone there, who is actually autistic, whose experience more closely mirrors your situation in terms of the challenges. They also follow the “acceptance paradigm”, but may have more to offer in terms of the specific support, feedback, insights, etc., that you need.

    • A bit embarrassing, and I don’t know at you will get this, but maybe at your kid is like me, it wasn’t til I was at fourteen years old that I felt I could use the bathroom without getting explicit permission to do so. Asking could be difficult. I don’t know what changed at that thought process.

  7. Funny, there are many who reported that their children had seizure reactions to vaccines and then immediately lost speech and developmental skills, ending up with a diagnosis of autism. When these parents insist that the vaccines had something to do with THEIR child’s autism (not necessarily anyone else’s autism), they are told that they are lacking in knowledge and training, and are accused of coming to imaginative conclusions not grounded in reality.

    Sound familiar?

    • Read M Kelter’s reply to Joni’s message above. He understands where his experience fits into the bigger picture. This is not about some people have one experience, and the medical establishment is using their degrees to shut parents up. The medical community has listened to those stories, they have tested the conclusions drawn, and found that the conclusions (not the experiences) do not fit with the science.

      Most (if not all) of us agree that many children first show signs of autism near the time they receive vaccines. That experience, however, does not contradict the reality that vaccines do not cause autism.

  8. A true expert does not need to fall back on credentials to support an argument. A true expert can explain the logic behind his or her argument. If an “expert” has to rely on certifications to make an argument, then that person is really not an expert at all.

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