A Tale of Three Experts

Standard

The following is a story I wrote based on an explanation I gave to someone who wanted an easy-to-visualize metaphor of how strange and arbitrary the designation of things like “kinds of autism” and “severity” and stuff are when performed by the average diagnostician/etc. It’s also relevant to my last post about assumptions.

Once upon a time, there were three renowned autism experts: Dr. Johnson, Dr. Smith, and Dr. Shaw. Through meticulous research, they had noted that most autistic people had animals living in their homes with them. Level of function was determined by the amount of iguanas and canaries in a person’s home: five was mildly autistic, ten was moderately autistic, fifteen was severely autistic, and twenty was profoundly autistic. They carried out their assessments of the presence of autism and level of functioning by visiting homes and counting the animals. In reality, the presence of any animals living in the home signaled autistic traits, but the experts were – being non-autistic and Very Professional – overly focused on unimportant details about autistic people.

The first person they assessed was named Julio. Julio had five canaries, ten iguanas, and five pigeons. Dr. Johnson was best at noticing canaries, so he wrote down that Julio was mildly autistic. Dr. Smith was best at noticing iguanas, so she wrote down that Julio was moderately autistic. Dr. Shaw was good at noticing both, so xe wrote down that Julio was severely autistic.

Next, they assessed Jane. Jane had five iguanas, ten canaries, and five ferrets. Dr. Johnson wrote down that Jane was moderately autistic. Dr. Smith wrote down that Jane was mildly autistic. Dr. Shaw wrote down that Jane was severely autistic.

Then, they assessed David. David had twenty iguanas. Dr. Johnson wrote down that David was not autistic at all. Dr. Smith and Dr. Shaw agreed that David was profoundly autistic.

Now they came to Kazuko’s house. Kazuko had twenty canaries. This time it was Dr. Johnson and Dr. Shaw that agreed Kazuko was profoundly autistic, and Dr. Smith who believed that she was not autistic at all.

The next person on their list was named Geoffrey. Geoffrey had nineteen canaries and a tarantula. Dr. Johnson was terrified of tarantulas, but did not want to tell anyone that. He pretended to have assessed Geoffrey and found him not to be autistic. Because he disliked being at Geoffrey’s house so much, though, he wrote down that Geoffrey had a personality disorder that was extremely hard to treat and outside his specialty. This ensured that he would never have to see Geoffrey again. Dr. Smith was not afraid of tarantulas, but because she did not see any iguanas she concurred that Geoffrey was not autistic. Dr. Shaw noted all the canaries and said that Geoffrey was profoundly autistic.

Next came Helen. Helen had fifty cats. The three doctors agreed that Helen was not autistic at all.

Alex’s house had three canaries, five iguanas, a hamster, a pig, four ferrets, a dog, three mice, and two boa constrictors. Dr. Johnson wrote down that Alex had a few autistic traits and might have Asperger’s or PDD-NOS. Dr. Smith wrote down that Alex was mildly autistic. Dr. Shaw was extremely interested in ferrets, and spent xyr entire time at the assessment playing with and watching the ferrets. To make up for lost time, xe wrote that xe had found that Alex was not autistic at all but had several highly interesting neurological traits that were worthy of further study. This was so xe could come back and play with the ferrets.

Penelope had eight canaries, eight iguanas, a rabbit, a ferret, a bear, and a bonded pair of rabbits. While Dr. Johnson would have otherwise written that Penelope was approaching moderately autistic, he was fascinated by rabbits. He spent his whole time hanging around with the rabbits and forgot to count the canaries. He wrote instead that Penelope was highly gifted because she had rabbits in her house. Dr. Smith would have also written that Penelope was hovering around moderately autistic, but she took one look at the bear and ran off screaming. She wrote that Penelope was an extremely disagreeable person with behavior problems, but not autistic. Dr. Shaw played with the ferret and wrote Penelope up, like Alex, as deserving further study for interesting neurological traits.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

21 responses »

  1. Pingback: My impostor, myself (erroneous on both counts!) « Truly Outrageous

  2. I loved your story. Thank you for being you and telling these sorts of stories so people can have an understand of how special of a person you truly are.

  3. That is the best description of the diagnostic process I’ve ever read.

    (Personally, I don’t have enough animals to meet the diagnostic criteria. And at least one of the specialists was scared off by my pet rats.)

  4. It’s funny because it’s true– though it’s frustrating to think of the sheer number of times that we, and others, after figuring out what a given expert’s idea of what “real fill-in-the-blank” was, then had to play to that stereotype in order to get services and for people to acknowledge that you were a fill-in-the-blank at all, even if it meant doing things you wouldn’t normally do.

    And then, of course, the really insidious thing about it is that once you sell yourself to the expert as a Real Whatever by fulfilling those stereotypes, the expert will often turn around and go “Aha, what a perfect example of the fact that X people always do Y thing! This case just goes to reinforce that fact!” And you realize that you’ve just had to be complicit in perpetuating a stereotype which is going to continue to be used against other people who are not much different from you, and those people will be told they are Not a Real Whatever (unless they learn to play to it also), even if your reason for perpetuating it was because you needed certain things for basic survival and you wouldn’t be believed any other way.

  5. I have an ill trained (possibly untrainable) pure-bred lap-dog. I’m pretty sure that puts me in line for a diagnosis of something, maybe anti-social personality disorder.

    Thank you for the description of the labeling process. It’s a nice sort of clear view into it. Parents describe their ASD kids getting a “charm bracelet” full of different diagnoses before one is finally settled on, but there’s not much to say that the final one will be that helpful, either.

    You might add that at another home the doctors all agreed that Simone was severely autistic (15 iguanas and a hedgehog), but that Simone’s mother disagreed and told the doctors to diagnose Simone as bi-polar or else.

  6. That was very informative and useful to help explain to people that nobody fits neatly into a metaphorical box when it comes to being on the spectrum.

  7. Having trained in diagnosis, I found this post very interesting.

    To be honest… I think it says more about th prejudices of the ‘experts’ than it does about the actual criteria.

    Good post.

  8. Some of the stereotyping process described here is, unfortunately, innate to most non-autistic people — even the “experts” who should know better.

    To some extent, this process can be defeated with better awareness and education of the “experts.” For example, it used to be that transsexuals could only be “diagnosed” as transsexual if they presented as pure, 100% hetreosexually oriented: if they said they identified as a woman, then they had to be 100% attracted only to men; if they said they identified as a man, then thay had to be attracted only to women. An official diagnosis as transsexual was, and is, required for anyone who wishes medical approval for things like hormone treatments and sex reassignment surgery. So any transsexual who wanted hormones, surgery etc without the dangers of black market medical treatment had to jump through these hoops — anyone who identified as a lesbian or bisexual woman (or a gay or bisexual man) had to pretend to a sexual orientation they didn’t identify with. And trans women had to be perfectly feminine and so forth, in order to get the medical services they needed.

    Today, things still aren’t perfect, but most experts seem to better understand that transsexuals seem to have the same range of sexual orientations as everyone else, and that there is more than one way to be a “real woman” or a “real man”. So transsexuals do still have to go through the experts if they want non-blackmarket medical treatment, but someone who mostly has iguanas does not have to disguise them as canaries to fool the canary-oriented experts, because now the canary-oriented experts has learned to see iguanas too.

    I hope eventually something similar happens with autism and other “labels.” Though I think the underlying point here is that experts need to be better aware of their own biases in the first place — there needs to be a more consistent self-interrogation process: “Am I good at recognizing both canaries and iguana?” and if the expert realizes, “No, I only seem to be seeing canaries” then this should be a realization that, “Maybe I’m not good enough yet at recognizing iguanas” and then they go learn more about iguanas (and bunnies and ferrets and bears) and constantly challenge themselves, “Okay, it’s not enough to look for canaries, I need to look for iguanas and tarantulas too. And I also need to be looking at the whole person and how he/she/xe experiences the world, not just counting animals. Am I doing that, right now? If so, am I doing it enough?”

  9. Hah! Let’s see . . . I’ve got six bearded dragons, two pythons, a Quaker parrot and a tarantula. I’m sure there’s a *variation* in there somewhere that involves both “moderate” autism and “profound” personality disorder . . . previously unknown to science, but just itching to be named after the first doctor that “discovers” it. : P

  10. Exellent! I come from a family of hyperlexics, and we’ve seen a number of folks who want to come play with our ferrets…

  11. I have 3 cats, 2 rats and 4 fish. I guess they’d say I wasn’t autistic.
    One interesting thing is how our cats all seem to gravitate to me. Recently I looked around and noticed that two of our cats were closer to me than anyone else in the house and the third was in between me and my mother.

  12. Self-Injurers, I don’t know if this will work on posting here. I’m just warning, there is some stuff I said which might be triggering. So like, if you are easily triggered, don’t read this post.

    Interesting, that they say at Wikipedia, Hypermobility is related to depression and anxiety. Do you think this might be, in part to how some people with depression and/or anxiety have a tendency to deal with the symptoms through self harm.

    For example, sometimes if I’m anxious about something, I’ll do trick with my fingers. Like cross them over in weird positions, and stuff. Is that like Hypermobility, or stimming. Or it could be both stimming and self harm, cuz sometimes I do it even though it’s painful. I figure as long as I don’t break anything (Which I am very very careful not to do), at least it’s not as noticible as scabs from picking myself to SI that way.

  13. What does it mean if you have 10 + cats, 5 dogs, and a assortment of birds? I think it all just means, that you’ve had enough of people demeaning you, and animals are better because they only want love.

    I guess I could see where that would come in, to diagnosing Asperger’s Syndrome. What with the lack of socialization and all. Maybe Autism. I think them saying having alot of pets is a personality disorder, is just saying “Well you’re not social, therfore not “normal” in another fashion. I mean The Crocodile Hunter, he was very into caring for animals, and everyone loved him.

    I’m also wondering, if you have a habit for caring for AI pets. Like Tamagotchi, ect. Would you be diagnosed as being on the spectrum, or diagnosed as acting as if you were Japanese? j/k Like, AI pets are very popular in Japan.

  14. Jackie

    As I understand it, hypermobility is an ability to move your joints in ways that most people cannot. Just because a person may happen to self injure, or have depression, or have anxiety does not necessarily imply hypermobility, or vice versa.

    (Where wikipedia says that they may be “linked” I think they probably mean that a person who has one condition might be more likely to have one of the other conditions as well. But this won’t necessarily be the case for everyone. And it doesn’t mean that one necessarily *causes* another–they might just go together genetically or something, in the same way that people with blue eyes more frequently have blond hair and vice versa–blue eyes don’t cause blond hair, they just happen to frequently occur together.)

    Given that hypermobile joints are more prone to injury, I suppose that a person who is hypermobile and who also happens to participate in self-injuring behaviors might find it easier to injure themselves through behaviors that might be relatively harmless for most other (non-hypermobile) people. But simply posturing your fingers into various positions, painfully or not, does not imply that you necessarily have hypermobility unless you are able to stretch your fingers into positions that are highly unusual and impossible for most of the other (non-family) people you know. (I specify non-family because I’m assuming hypermobility is part genetic, which would mean that if one person is hypermobile maybe other blood relatives are also.) And not everyone with hypermobility necessarily self-injures on purpose.

    Hypermobility is not a behavior. It is a physical condition.

    Re, animals: Amanda’s story was allegorical (an extended metaphor or analogy). It was not meant to be taken seriously or literally.

    Hope this helps. Or was this what you were looking for?

  15. It’s a physical condition, and also genetic, as far as I understand– you’re born that way. We’ve always hyperextended our knees and this shows in pictures taken when we were little, it just apparently became more and more noticeable to other people with age.

    The only thing I can think of that would link it to depression and anxiety is that it can cause you to be in pain a lot, and if you don’t know what the source of your pain is, you’re certainly likely to be depressed and anxious about it.

    Wikipedia isn’t necessarily a reliable source on everything, people often interject weird ‘facts’ into the articles that are basically just their own ideas.

  16. Much Shalom.

    First of all I would like to thank you for the insights I gain from your writing and the information and views you share. Many thanks.

    I’m a father and I have a young blog (in Hebrew) of my own focusing in ethics, human rights, parenting and science aspects of autism.

    I would like to ask for your permission to translate “A Tale of Three Experts” to Hebrew and post it in my blog. Needless to say, that it will be published under your name and with a link to your original post.

    Thanks again.
    sharon

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