For people who think counting autistic people in the past is easy.

Standard

I’ve written before about descriptions of autism before autism was known about, in old documents about various kinds of “idiots” and “imbeciles“.  Here is a little comment about children diagnosed as both emotionally disturbed and deaf at a time when hearing tests weren’t all that reliable, from someone who was there at the time and now thinks these children were autistic:

I was supported by this National Institutes of Health training program for a fourth year during which I attended pediatric neurology ward rounds with Dr Jim Hamill or Dr Carter and Dr Carter’s Wednesday morning outpatient rounds for children with cerebral palsy and those with speech and hearing disorders. The latter intrigued me, as what ailed thesenonverbal children was not obvious. (I found out later that behavioral audiology was unreliable at diagnosing the severity of hearing losses in very young children, and, in retrospect, that autism would no doubt have been the correct diagnosis in some puzzling “emotionally disturbed” mute children.)

That is from “Isabelle Rapin:  An Autobiography”, in the Journal of Child Neurology (May 2001), and she’s describing work she did in the 1950s.
Another set of autistic children who weren’t known to be autistic back then.  I bet today they would be.  But, today, they’re part of an “epidemic”, because nobody could have missed such severely autistic people back in the 1950s.  (That last sentence is sarcasm.)

I don’t have the attention span at the moment to elaborate at length, so I’ll leave the implications to others.  But, I’m suspecting there’s a whole lot of different disciplines you’d have to collect up and count kids from in previous generations before you could say you knew how many autistic people there really were back then.

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.

14 responses »

  1. I blogged about one (likely) autistic girl way before “autism” was named; Ruth Austin (1892-1918), here:
    http://disstud.blogspot.com/2005/08/disability-history-image-3.html
    It’s just historical luck that Ruth’s mother was friends with a physician who went on to write about Ruth, in enough detail that the picture becomes clear. (I didn’t mention there, but Ruth’s differences from other children became evident around the age of 3, and her mother was told to feed Ruth ground-up birds’ tongues to help her talk…so dubious “cures” have been around forever too.)

  2. Thank-you for raising this issue of “mute” children. When I was little, in the 60s, I was sort of obsessed with this subject. It was very common, as my faded memory seems to recall, in Victorian novels and Victorian children’s stories for there to be a mute character. I was so intrigued by the idea of this when I was a child. I also seem to recall Sunday School stories that had muteness as a subject matter as well.

    One of the reasons I was so intrigued with the concept is that during the 60s (my childhood time-frame) I knew many kids with speech, hearing and sight “disorders” and we all played together in the various neighborhoods in which I lived. I found so many of the children fascinating from my own kid’s perspective. And it never occured to the “kid me” that they were “disabled”.

    So, in circa 2000 when certain people began screaming “epidemic” and “never having seen anyone with autism IN THEIR ENTIRE LIVES”, I was so confused … when I recalled my childhood and wondered if it could have possibly been so different from all those who were blasting out frightening messages to the media, on-line, etc. And I wondered, where were all the mute kids … and I knew. I was so perplexed that no one ever mentioned that in the past muteness was not at all rare and yet “now” no one appeared to have ever known that it existed.

    Thanks, again, for bringing up this topic.

  3. There are plenty of 30-thirtysomethings that spent their childhoods and much of their young adult life undiagnosed and misdiagnosed. I went to college with one. I never knew him well, but saw him on campus and heard him talk frequently. He studied in the music dept. 10 years later, within days of my son being diagnosed, I immediately thought of him and called an old college friend to ask if he knew anything. In fact, the man had only recently been diagnosed autistic. All the way through his 20s, he was diagnosed schizophrenic.

    We were late to notice anything different about our own son because he shared the exact same traits as my husband. Same speech delays, learning problems, “innapropriate laughter”, often not knowing what was being said, being a visual thinker, etc.

    Another ancient practice was “elocution” training for slow talkers, shy girls and young scholars. “Normal” people had this to be good readers (popular form of entertainment before tv and radio) and young children who didn’t speak when they were supposed to as well. My grandmother didn’t speak until she was 4 and they gave her elocution lessons.

  4. I think the whole epidemic idea came about in part as a result of a common tendency amongst non-autistic people- namely being more aware of things which have been brought to your attention in a very personal way. I likened this on a parents forum to the common phenomenon that occurs after you purchase a new car. Even if you had never really noticed this particular car in the past, now all of the sudden you are seeing them everywhere. Is it more likely that last week there were no other cars like yours on the road and that everyone purchased their cars at the same time that you did, or is it more likely that you failed to pay attention to those particular cars last week despite the fact that they were there in almost the exact same numbers?

  5. Talk of an ‘epidemic’ is always of great annoyance to me when it comes to conditions like autism, where diagnostics have come along in leaps and bounds within a very short space of time – the likelihood of getting diagnosis now has increased dramatically from just ten years ago. The same goes for all variety of conditions and impairments.

    There are also, of course, a great number of traits and behaviours which once considered pathological are now considered healthy and “okay”. The same will undoubtedly be the case in the future.

  6. Yes. As many can attest, I’m still deaf and mute. Well, 75% of one and 92% of the other and 68% of something else.??? Alas, either that or I’m an epidemic now or I’m just honery(sp? (onery?)) kid #3145968 who thinks he knows it all and can’t possibly have anything. After all, I just made some text! Wow!!!!!!

  7. If anyone out there has access to a good university library it might be worth your while to dig out a copy of the June 4, 1853 issue of Charles Dickens’ Household Words. It contains an article about some very autistic sounding people. Despite the perjorative name of the piece (“Idiots”), it makes the case for better and more sympathetic treatment of the so called “imbeciles.” Here, from early in the article, is a sample paragraph:

    Until within a few years, it was generally assumed, even by those who were not given to easy assumptions, that because an idiot was, either wholly or in part, deficient in certain senses and instincts necessary, in combination with others, to the due performance of the ordinary functions of life- and because those senses and instincts could not be supplied- therefore nothing could be done for him, and he must always remain an object of pitiable isolation. But, a closer study of this subject has now demonstrated that the cultivation of such sense and instincts as the idiot is seen to possess, will besides frequently developing others that are latent within him but obscured, so brighten those glimmering lights, as immensely to improve his condition, both with reference to himself and to society. Consequently there is no greater justification for abandoning him, in his degree, than for abandoning any other human creature.

    A few pages later, the article concludes with the hope that- if humane and decent treatment of “idiots” continues- someday Shakespeare will be annotated to say “A tale told by an idiot, full of sound instruction, signifying something.”

  8. I think Frustrated has a good point. I’m now 47. Roughly a year and a half ago, I stumbled over information regarding Asperger’s, and realized I fit the profile, both in childhood and adulthood, extremely well, and realized from realizing the writings of people who knew themselves to be on the spectrum, that I too was autistic. Up to that point, I can remember meeting only one individual whom I knew to be autistic. In 45 years! Of course, there are others whom I suspect are on the spectrum, but possibly not, whom I knew at various stages of my life: but my view of them as being possibly autistic came only when I began to learn about autism as it applied to me. At the time I knew them, I didn’t connect them with autism, or anything like it. So during 45 years I had one encounter with a person whom I knew to be autistic. And I work in retail, where a whole variety of the general public comes across my ken.
    The day after I decided I was autistic, I encountered a person who was obviously autistic–although I didn’t have a chance to ask directly if he was. Over the next several months, I encountered at least one autistic person a week, mostly at my job. Most of them I was able to confirm were on the spectrum. The stream of encounters then began to dry up, but has not entirely stopped.
    Obviously, my autistic radar was more sensitive: and I had more awareness and information. No doubt I had simply missed an enormous number of others over the years.

    One further point: in _Autism_ Ute Frith pointed out that during the period autism rates supposedly increased because of vaccines, diagnoses for generalized mental retardation decreased at a corresponding rate. Her conclusion, of course, was that this simply represented a change in diagnosic practices: that some children who would have previously been diagnosed with an undifferentiated lable of MR are now precisely labeled as autistic.

  9. Another angle on the same lines. How many doctors ‘diagnosed” a child who may have had motor problems and couldnt speak as mentally retarded and forced the parents to institutionalize him/her? It would be interesting also to compare stats of states that were of the idea “you cant speak or walk send them away” and those that said ‘keep them with us as long as possible”. Plus the states that were at the forefront of closing their large institutions versus those that only reduced their ‘clients” under threats and warnings. I still have a problem understanding how you can label someone mentally handicapped if they don’t have a means of communciation AND have not been accepted into ‘normal” family life. My theory is that states that said ” keep them home” MIGHT have started to have higher rates of autism than those that sent them away. And is there any correlation to the availablility of communication systems that would prove that because you lost your ability to speak you hadnt lost your ability to think? Meaning that a person who was “retarded” was assumed NOT to be capable of communicating BUT a person with autism was. Therefore if you cant speak and can communicate you must be autistic. And of course you have the thousands of doctors who dont appreciate the fact that people are finding out that they deliberately misdiagnosed patients simply to get them out of their hair. All of a sudden they arent being treated like God anymore and that can be a difficult pill to swallow. So they have to justify their diagnosis somehow -why not say ” ITs a epidemic ” rather than admit “yes I have seen this behaviour many times before and I put them in institutions as fast as possible”

  10. jeffrey smith says:
    I’m now 47. Roughly a year and a half ago, I stumbled over information
    regarding Asperger’s, and realized I fit the profile, both in
    childhood and adulthood, extremely well, and realized from realizing
    the writings of people who knew themselves to be on the spectrum,
    that I too was autistic.

    I am not jeffrey smith, but I can repeat this statement for myself in nearly every detail. And I can think of people I have known who in retrospect were almost certainly autistic, but had been described as being “odd”, “retarded”, or even (when I was hanging out with Christian fundamentalists) “demon-possessed”

  11. I haven’t read your comments yet, so I have no idea whether anyone has suggested this one yet or not — but you’d have to include all of the children that had physical disabilities at an early age, especially if they also had surgery (or other medical trauma) while little. Everything can end up explained away as either part of the disability or a reaction to the trauma, even when the signs are completely unrelated.

    What I think makes it even more pertinent to the current “epidemic” nonsense is that doctors are only *now* gradually not doing that. As recently as 1998/1999 I was emailing with parents of disabled kids that in retrospect were clearly autistic, without *ever* hearing the term used. I had started seeing spectrum-related terms in the rare-disability forums the last few years, but there were still plenty of firm “it’s just his personality” or “it’s just because of the trauma” adherents there the last time I looked. Obviously, though, as more of them are converted to the right terminology, more are going to be included in official counts.

    Another reason not having to do with that myth… Parents of kids with rare disabilities often relocate the whole family (temporarily or permanently) to be near a good surgical center. Those kids, if diagnosed autistic, then suddenly show up as if they’d been *born* in the state when they start school. Diagnosed or not, when they start going to school, they end up getting many of the same services. (25 years ago, also, I believe the kids like me were mainstreamed with our *developmental* services/accommodations under a physical category because of the “it’s part of the disability” myth.)

  12. Yeah. I know a lot of people who are almost undoubtedly autistic, but undiagnosed, because their first diagnosis was something else I seem to have that’s associated with being autistic but that… yeah if the people have that diagnosis to begin with then autism is rarely considered as a secondary diagnosis.

    And that’s even the ones who don’t need surgery (a lot do, particularly with the more severe versions) get that kind of thing.

    I saw a case study recently, where there was a kid with this, above-normal IQ (which even normal IQ is supposedly quite rare for this), and had trouble socializing and with self-care skills, and was a “perfectionist” academically and in other areas of life. The explanation given, was that he was small for his age, so people did things for him that he could undoubtedly do for himself, and the social trouble was because he was small for his age, and the perfectionism academically must be to compensate for the social trouble. As in, a complicated, convoluted explanation for the kid probably being autistic.

    And I see a lot of that kind of explaining away, and a lot of very autistic-seeming descriptions, being given in more medical-seeming ways rather than the psychiatric ways that autism is described by the psych profession. And I think a lot of people who have the things that look more medical, if they’re caught early enough (which depends on both severity and well-known-ness of the condition), it doesn’t come to people’s attention they could possibly be autistic.

    (A bit of that’s a tangent off of what you wrote, but my attention span is still not what it could be.)

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