Donald was the first child ever diagnosed with autism.
September 1, 2019 2:39 AM Subscribe
Donald was the first child ever diagnosed with autism. Identified in the annals of autism as “Case 1 … Donald T,” he is the initial subject described in a 1943 medical article that announced the discovery of a condition unlike “anything reported so far,” the complex neurological ailment now most often called an autism spectrum disorder, or ASD. At the time, the condition was considered exceedingly rare, limited to Donald and 10 other children—Cases 2 through 11—also cited in that first article.
That was 67 years ago.* Today, physicians, parents, and politicians regularly speak of an “epidemic” of autism. The rate of ASDs, which come in a range of forms and widely varying degrees of severity—hence spectrum—has been accelerating dramatically since the early 1990s, and some form of ASD is now estimated to affect one in every 110 American children. And nobody knows why.
(Published in The Atlantic 2010; 76 years ago now.)
~~~~~
In subsequent years, the scientific literature updated Donald T’s story a few times, a journal entry here or there, but about four decades ago, that narrative petered out. The later chapters in his life remained unwritten, leaving us with no detailed answer to the question Whatever happened to Donald?
There is an answer.
That was 67 years ago.* Today, physicians, parents, and politicians regularly speak of an “epidemic” of autism. The rate of ASDs, which come in a range of forms and widely varying degrees of severity—hence spectrum—has been accelerating dramatically since the early 1990s, and some form of ASD is now estimated to affect one in every 110 American children. And nobody knows why.
(Published in The Atlantic 2010; 76 years ago now.)
~~~~~
In subsequent years, the scientific literature updated Donald T’s story a few times, a journal entry here or there, but about four decades ago, that narrative petered out. The later chapters in his life remained unwritten, leaving us with no detailed answer to the question Whatever happened to Donald?
There is an answer.
(oh, also, race, transness, trauma not really touched on in here. So trigger warnings for excluding/norming on those axes too)
posted by Mistress at 3:52 AM on September 1, 2019 [2 favorites]
posted by Mistress at 3:52 AM on September 1, 2019 [2 favorites]
Awful, stigmatising article. Should have hired an autistic writer.
posted by lokta at 5:33 AM on September 1, 2019 [3 favorites]
posted by lokta at 5:33 AM on September 1, 2019 [3 favorites]
(thank you for the background, Mistress, I hadn't read your comment yet)
posted by lokta at 5:34 AM on September 1, 2019
posted by lokta at 5:34 AM on September 1, 2019
There's some context that's not discussed here that contradicts the idea that DT was the first child diagnosed with autism.
Leo Kanner left a hospital position in Vienna where he had the opportunity to examine each and every difficult child in Austria in the 1930s, along with Hans Asperger. But that was the era of eugenics and nazism. So, nothing published. He then leaves for the US on account of the Anschluss, with his experience of prior cases and a seething hatred of Asperger (which we know know was probably well and truly earned). He then waits 5 years before publishing anything about Donald T.
Maybe Kanner's notes will confirm or deny it, but it looks to me like Donald T. was not the first child diagnosed as autistic. He was the first child used as a case study for publication, because he was the first child that Kanner could write about and not endanger his safety. (Because DT's family and neighbors were adequately protective of him.)
posted by ocschwar at 5:46 AM on September 1, 2019 [15 favorites]
Leo Kanner left a hospital position in Vienna where he had the opportunity to examine each and every difficult child in Austria in the 1930s, along with Hans Asperger. But that was the era of eugenics and nazism. So, nothing published. He then leaves for the US on account of the Anschluss, with his experience of prior cases and a seething hatred of Asperger (which we know know was probably well and truly earned). He then waits 5 years before publishing anything about Donald T.
Maybe Kanner's notes will confirm or deny it, but it looks to me like Donald T. was not the first child diagnosed as autistic. He was the first child used as a case study for publication, because he was the first child that Kanner could write about and not endanger his safety. (Because DT's family and neighbors were adequately protective of him.)
posted by ocschwar at 5:46 AM on September 1, 2019 [15 favorites]
I think there's a lot more interesting stuff that could be in a FPP about autism, but I will say that I don't think the fact Donald (Mr. Triplett) was sent to live on a farm is a trigger. As described in Neurotribes, it was a great place for him to live independently with support as a young man.
posted by schwinggg! at 6:07 AM on September 1, 2019 [1 favorite]
posted by schwinggg! at 6:07 AM on September 1, 2019 [1 favorite]
Also Donald Triplett may or may not have been the first person "diagnosed" with autism, but that's not because doctors suddenly detected a new condition. He was the first because doctors created the diagnosis. There's no "epidemic," like measels. To me, the best line in Neurotribes is a seemingly offhand observation about the difference between having the goal to educate children with learning differences (Asperger's goal, to some extent) and the scientific goal of diagnosing and finding cures and making grand "first" discoveries. IMO there is still FAR too much of the latter in the autism world. Who cares if Donald was the first man diagnosed with autism. Let's study instead why he flourished on that farm, and how to replicate it. (Hint - it had to do with accepting and encouraging him.)
posted by schwinggg! at 6:14 AM on September 1, 2019 [5 favorites]
posted by schwinggg! at 6:14 AM on September 1, 2019 [5 favorites]
Can those who dislike this article and find it triggering explain a bit about why? I'm genuinely curious (and in no way intending to offend or imply that I don't think you should feel the way you feel at all). It reads quite sympathetically and respectfully to me, so I clearly am just not getting it, and I'd like to know more so I can get it.
posted by biscotti at 6:44 AM on September 1, 2019 [6 favorites]
posted by biscotti at 6:44 AM on September 1, 2019 [6 favorites]
So I'm still reading and forming my actual opinion of the piece, but here are notes that stick out to me as I read:
The audience of this piece is also extremely clearly aimed at allistic people reading it. That's very evident in the work that the author does to lay out explanatory background, but it's also evident in the framing of the central question it focuses on:
The article goes on to remark at the imagined fear of a wave of autistic adults hitting maturity. This piece was published right as I was hitting age 20, one of a huge wave of autistic adults doing exactly that... and you know, it's remarkable how few pieces were published about autistic adults even then. Now there are very few more. That stood out to me both then and now, too.
How we respond to those needs will be shaped in great measure by how we choose to view adults with autism.
Who is we? Who is being viewed? Am I part of the we? Do my choices matter? Am I one of the people you have in mind, author? Probably not; after all, I have learned to compensate and hide who I am, tucking it under familiar stereotypes with a different label. But this article was absolutely not written by someone who was aware someone like me might read it. Which is silly: many, many autistic people are curious about ourselves and, especially around diagnosis if we are diagnosed late enough to find them, will seek out articles on the topic to absorb. Ambition for them--golly gee, man, I am pleased that you're ambitious on my behalf.
*Allistic is newer terminology that refers to "non-autistic" without framing anyone as normal. At the time this article was written, non-autistic people would have been casually referred to as "neurotypical" or "NT" within autistic spaces, as part of that desire to mark both types of people rather than cede the ground of "normality" to allistic people only. Note that "typical" is still in the name of "neurotypical!" But "typical" is less loaded in its connotations than "normal."
posted by sciatrix at 7:55 AM on September 1, 2019 [17 favorites]
Differing factions argue that the gluten in food causes autism; that the mercury used as a preservative in some vaccines can trigger autistic symptoms; and that the particular measles-mumps-rubella vaccine is to blame. Other schools of thought have portrayed autism as essentially an autoimmune response, or the result of a nutritional deficiency. The mainstream consensus today—that autism is a neurological condition probably resulting from one or more genetic abnormalities in combination with an environmental trigger—offers little more in the way of explanation: the number of genes and triggers that could be involved is so large that a definitive cause, much less a cure, is unlikely to be determined anytime soon. Even the notion that autism cases are on the rise is disputed to a degree, with some believing that the escalating diagnoses largely result from a greater awareness of what autism looks like.This is part of a paragraph discussing some of the century of controversy surrounding the etiology of autism, and it stands out to me for a couple of reasons. One is language like genetic abnormalities and environmental trigger. How abnormal are autistic people? What is normal, anyway? If you think that autistic people are normal, that there isn't particularly anything unusual about a person being autistic (as I happen to), that framing really raises some eyebrows. The last paragraph is also pretty ambivalent--a lot of people both in 2010 and today believe that. I mean, I certainly strongly did, and 2010 would have been a few years later than the peak time I was hanging around at WrongPlanet. It does tend to be a belief that is more common among autistic people than it is among allistic people.*
The audience of this piece is also extremely clearly aimed at allistic people reading it. That's very evident in the work that the author does to lay out explanatory background, but it's also evident in the framing of the central question it focuses on:
THE QUESTION THAT haunts every parent of a child with autism is What will happen when I die?Again, the notion that the big important question about the lives of autistic adults is something that parents of autistic children worry about, and parents of autistic children who are assumed to be allistic themselves, is kind of alienating. It's very reasonable for someone at the Atlantic to assume that the bulk of the audience are not autistic or very familiar with autism; it's much less reasonable to write the piece in such a way that it assumes that autistic readers are not in the audience.
The article goes on to remark at the imagined fear of a wave of autistic adults hitting maturity. This piece was published right as I was hitting age 20, one of a huge wave of autistic adults doing exactly that... and you know, it's remarkable how few pieces were published about autistic adults even then. Now there are very few more. That stood out to me both then and now, too.
How we respond to those needs will be shaped in great measure by how we choose to view adults with autism.
Who is we? Who is being viewed? Am I part of the we? Do my choices matter? Am I one of the people you have in mind, author? Probably not; after all, I have learned to compensate and hide who I am, tucking it under familiar stereotypes with a different label. But this article was absolutely not written by someone who was aware someone like me might read it. Which is silly: many, many autistic people are curious about ourselves and, especially around diagnosis if we are diagnosed late enough to find them, will seek out articles on the topic to absorb. Ambition for them--golly gee, man, I am pleased that you're ambitious on my behalf.
*Allistic is newer terminology that refers to "non-autistic" without framing anyone as normal. At the time this article was written, non-autistic people would have been casually referred to as "neurotypical" or "NT" within autistic spaces, as part of that desire to mark both types of people rather than cede the ground of "normality" to allistic people only. Note that "typical" is still in the name of "neurotypical!" But "typical" is less loaded in its connotations than "normal."
posted by sciatrix at 7:55 AM on September 1, 2019 [17 favorites]
Mind you, this whole thing about pieces about autistic people being very, very certain that we are not in the audience or a target audience at all is nothing new. It's actually something that annoyed me deeply about Neurotribes when I read it, even though I was regretfully aware that I was not the target audience. When you never are the target audience in discussions of people who are supposed to be you, that attitude rankles. It's not new--I'm not even sure I'd call it triggering at this point in my life, because it's such a piece of the background radiation of the topic--but it is certainly not making me feel well disposed.
I'm going to read more of the piece now and will comment again when I've actually finished Triplett's story.
posted by sciatrix at 7:58 AM on September 1, 2019 [5 favorites]
I'm going to read more of the piece now and will comment again when I've actually finished Triplett's story.
posted by sciatrix at 7:58 AM on September 1, 2019 [5 favorites]
Some things about the article get my hackles up - talking about a cure, high/low functioning language, the lack of autistic voices, the general 10-year-old article written by allistics-ness - and some things are very upsetting, like the institutionalization and emotional abandonment of a three year old. But it's a very interesting article and not, like, the worst it could've been, so I'm glad I read it.
Like, the difference between 'warehousing' a child and putting them in an environment (the farm) where they can be treated like an individual and supported and encouraged (and then later, having the support and acceptance of your whole ass town and family!) ... would that everyone had that opportunity ):
And the context that ocschwar brings to this is going to send me off on a day of reading, probably.
posted by gaybobbie at 8:09 AM on September 1, 2019 [4 favorites]
Like, the difference between 'warehousing' a child and putting them in an environment (the farm) where they can be treated like an individual and supported and encouraged (and then later, having the support and acceptance of your whole ass town and family!) ... would that everyone had that opportunity ):
And the context that ocschwar brings to this is going to send me off on a day of reading, probably.
posted by gaybobbie at 8:09 AM on September 1, 2019 [4 favorites]
The truth is that we often deny to adults with autism the kind of empathy and support we make readily available to children with the condition—or, for that matter, to people with white canes at crosswalks.
I got a good friend who is both blind and autistic. He does use a cane. I, uh, it is to laugh when we assume that people treat blind folks better than autistic folks, let me tell you. Let's not take potshots are other forms of disability when we're trying to get people to agree that we ought to treat folks with other forms better, thank you.
Okay. I'm going to quit poking at the article's tone--which I'm actually pretty sure, from the framing of the original post, that dancestoblue already knew good and well was an issue and didn't need explaining--and start talking about the substance of the information it's bringing up to me that I didn't already know. I'm going to talk some about Donald Triplett's story. I'm going to talk about the good stuff.
I am very, very certain that Triplett only did as well as he did because his parents were some of the few ready and willing to collect their child from an institutional setting. I am actually really impressed by the effort his parents put into both seeking help for him and refusing to write him off, as was the prevailing response then. I am also pleased by his community and their support for him--not even so much that they did a lot, but just being willing to adjust and talk and not be judgemental shitheads about things that don't matter.
Even if that was only offered to him because he was wealthy and white and in a town and space where those bought him time and acceptance, that isn't nothing, either. I do think it's really powerful that this case study still exists and that there is a "but where is he, now?" ending that is unequivocally just "he is a person. a person who might need help with some things, but is still an adult person." That's all.
Also, ha at the whole "well, he's never had a girlfriend" thing--as an asexual person, I'm also grinning about that, because you don't gotta have a girlfriend to have a family. Queerness of many stripes is super common among autistic people, and there is a certain symmetry there: just because the happy ending I am looking for (and finding) doesn't look exactly like the one my mother envisioned for me, that doesn't mean that it is not just exactly what I wanted to find and what is most comfortable for me. I don't know that that's how Donald would identify--probably not, honestly, because he's a bit old to have picked up that particular reconceptualization of desire in any of the usual social circles--but it was such a pleasant ping of recognition for me, reading the article.
It sounds like Donald has a pretty good community and a good family who get him, even if the journalist is kind of annoying about it. That has a lot of value to it.
posted by sciatrix at 8:30 AM on September 1, 2019 [7 favorites]
I got a good friend who is both blind and autistic. He does use a cane. I, uh, it is to laugh when we assume that people treat blind folks better than autistic folks, let me tell you. Let's not take potshots are other forms of disability when we're trying to get people to agree that we ought to treat folks with other forms better, thank you.
Okay. I'm going to quit poking at the article's tone--which I'm actually pretty sure, from the framing of the original post, that dancestoblue already knew good and well was an issue and didn't need explaining--and start talking about the substance of the information it's bringing up to me that I didn't already know. I'm going to talk some about Donald Triplett's story. I'm going to talk about the good stuff.
I am very, very certain that Triplett only did as well as he did because his parents were some of the few ready and willing to collect their child from an institutional setting. I am actually really impressed by the effort his parents put into both seeking help for him and refusing to write him off, as was the prevailing response then. I am also pleased by his community and their support for him--not even so much that they did a lot, but just being willing to adjust and talk and not be judgemental shitheads about things that don't matter.
Even if that was only offered to him because he was wealthy and white and in a town and space where those bought him time and acceptance, that isn't nothing, either. I do think it's really powerful that this case study still exists and that there is a "but where is he, now?" ending that is unequivocally just "he is a person. a person who might need help with some things, but is still an adult person." That's all.
Also, ha at the whole "well, he's never had a girlfriend" thing--as an asexual person, I'm also grinning about that, because you don't gotta have a girlfriend to have a family. Queerness of many stripes is super common among autistic people, and there is a certain symmetry there: just because the happy ending I am looking for (and finding) doesn't look exactly like the one my mother envisioned for me, that doesn't mean that it is not just exactly what I wanted to find and what is most comfortable for me. I don't know that that's how Donald would identify--probably not, honestly, because he's a bit old to have picked up that particular reconceptualization of desire in any of the usual social circles--but it was such a pleasant ping of recognition for me, reading the article.
It sounds like Donald has a pretty good community and a good family who get him, even if the journalist is kind of annoying about it. That has a lot of value to it.
posted by sciatrix at 8:30 AM on September 1, 2019 [7 favorites]
(Also, one last point before I step out and go get myself breakfast:
This doesn't gotta be the only FPP about autism, my dudes. This can be one FPP about autism. You want a different link, you can go make your own that touches on other things. This link is fine, warts and all: I imagine there weren't many other accessible options for talking about Triplett here, just now.)
posted by sciatrix at 8:31 AM on September 1, 2019 [7 favorites]
This doesn't gotta be the only FPP about autism, my dudes. This can be one FPP about autism. You want a different link, you can go make your own that touches on other things. This link is fine, warts and all: I imagine there weren't many other accessible options for talking about Triplett here, just now.)
posted by sciatrix at 8:31 AM on September 1, 2019 [7 favorites]
There is no epidemic of autism. There is an “epidemic” of recognition, which is actually good news for autistic people and their families. As several people have mentioned, my book NeuroTribes, published in 2015, offers an alternate explanation for the increase in *diagnoses.* This includes the fact that by the time Leo Kanner saw Donald T., he was certainly not the first person to be diagnosed with autism, and yes, Kanner was working with a couple of Asperger’s former colleagues from Vienna (the authors of this article did not know this), who had already recognized what we now call the spectrum, and recognized that Donald was on what they called “the autistic continuum,” though Kanner would claim to have discovered the condition for reasons I discuss at length in my book. It’s my husband’s 50th birthday, so this will be my only response to this post, but carry on.
posted by digaman at 10:19 AM on September 1, 2019 [34 favorites]
posted by digaman at 10:19 AM on September 1, 2019 [34 favorites]
We watched Nancy Drew, the 2007 film with Emma Roberts, tonight and about midway through my youngest who is midway through a diagnostic track being fought with the school system for something that looks like autism except as the psychologist and I discussed in the latest phone call, the accepted diagnostic test they use is the older one that implicitly biases towards boys, and no, they haven't yet decided on what to do about girls with autism because they haven't had enough but that may have something to do with the testing, that's true....
If the film had been released today, there is no doubt she'd be seen clearly as someone with autism. She's adorable in a very slight film, and my daughter watched rapt. Ned who gets her - my daughter was just starry-eyed because "he likes the way she thinks. He understands she thinks differently from most people and he likes her way!" Her hyper-fixation on solving crime and the past, her disinterest in socialisation outside of specific people, her neatness and oh! her sleuthing bag - so many tiny notes of a life that works differently and well, the father who doesn't understand and sort of tries. (Note the mean kids in the film are the main non-white girls though.)
She turned to me midway and went "Is Nancy like me? Does she have, you know - ADHD - no wait, the other one? I love this film."
I had a vague idea that there were some weird people who were a bit odd like me when I grew up, and if I let on exactly how weird I was, I would go to an institution. She gets Nancy freaking Drew.
Thank you so much to all the people who worked so hard over the past one-two generations to make such a huge leap.
posted by dorothyisunderwood at 11:12 AM on September 1, 2019 [28 favorites]
If the film had been released today, there is no doubt she'd be seen clearly as someone with autism. She's adorable in a very slight film, and my daughter watched rapt. Ned who gets her - my daughter was just starry-eyed because "he likes the way she thinks. He understands she thinks differently from most people and he likes her way!" Her hyper-fixation on solving crime and the past, her disinterest in socialisation outside of specific people, her neatness and oh! her sleuthing bag - so many tiny notes of a life that works differently and well, the father who doesn't understand and sort of tries. (Note the mean kids in the film are the main non-white girls though.)
She turned to me midway and went "Is Nancy like me? Does she have, you know - ADHD - no wait, the other one? I love this film."
I had a vague idea that there were some weird people who were a bit odd like me when I grew up, and if I let on exactly how weird I was, I would go to an institution. She gets Nancy freaking Drew.
Thank you so much to all the people who worked so hard over the past one-two generations to make such a huge leap.
posted by dorothyisunderwood at 11:12 AM on September 1, 2019 [28 favorites]
I found the piece very touching. Made me think of family, and friends, and colleagues, and myself. And of the catharsis it was to read "Nobody nowhere" and "Somebody somewhere" in college.
posted by brambleboy at 1:02 PM on September 1, 2019
posted by brambleboy at 1:02 PM on September 1, 2019
Happy birthday to digaman's husband and thank you for your powerful book! I'm on the lookout for writing on autism by autistic authors if anyone in this thread has suggestions.. (I asked on askme a while ago and got a few suggestions but looking for more).
posted by latkes at 4:08 PM on September 1, 2019
posted by latkes at 4:08 PM on September 1, 2019
Digaman, I am starstruck! Many people recommended Neurotribes when my son was first diagnosed.
posted by schwinggg! at 8:58 PM on September 1, 2019 [2 favorites]
posted by schwinggg! at 8:58 PM on September 1, 2019 [2 favorites]
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posted by Mistress at 3:33 AM on September 1, 2019 [22 favorites]