Novel research question

February 10, 2015 6:15 PM

For the purposes of fiction, I am trying to learn about what it was like for an American child to be diagnosed with autism or Asperger's syndrome in the mid-1980s.

In this situation, the mother is from a white upper-class background, and has reasonable family resources. The father is absent, but pays child support. The area is suburban with good doctors for those who can get them, but no one likely to be on the cutting edge of thought.

The child's symptoms include lack of speech aside from echolalia, stimming, and insistence on repetitive motions and actions. He occasionally displays advanced cognitive abilities, although he is not a savant.

Would a doctor at that time recognize such symptoms and make an appropriate diagnosis? What kind of therapy or schooling would he suggest?

I appreciate your help.

posted by Countess Elena to Grab Bag (10 answers total)

Would a doctor at that time recognize such symptoms and make an appropriate diagnosis?

You can probably get away with whatever it is you need to happen for your dramatic purposes, but it would have been a coin-toss (and the situation probably would have been quite different in 1982 vs 1988).

I worked in a school environment with autistic children around 1993, and at that point a decently-well-off suburban school district had special education programs tailored for children with an actual autism diagnosis, but some of those children had been diagnosed at an earlier age with less specific diagnoses with the feeling that the doctors had maybe chosen the official dx based on what the local school system might be able to offer in the way of specific help.

If you look at the diagnostic criteria in the DSM III, the III-R, and the IV, you'll see how quickly the criteria evolved over 15 years. I think lots of pediatric specialists would have been fully aware of the criteria but I'm not sure how quick to diagnose they would have been, or how likely a child was to make it all the way to a specialist when family physicians and pediatricians might have taken a "wait and see" approach or maybe gone down the route of "learning disability" or "hyperactivity" diagnoses instead.
posted by Lyn Never at 6:50 PM on February 10, 2015

Speaking to the last part of Lyn Never's answer, here are definitions & mentions of autism (including the word's use within diagnostic criteria for schizophrenia) from the original DSM through the DSM-IV-R.
posted by The Bridge on the River Kai Ryssdal at 8:29 PM on February 10, 2015

I can't speak to this personally, but I am close to someone on the spectrum who was a child in the 80s from a similar background. His "symptoms" were treated as behavioral problems/mental disorders with medication. A lot of medication. Think anti-psychotics.
posted by tippy at 3:26 AM on February 11, 2015

It really is a coin toss. My brother was born in the late 80s and didn't get his formal Asperger's diagnosis until the 90s. When he was a toddler, he was just diagnosed with PDD. My parents ferried him around to tons of doctors, but there just wasn't a lot of knowledge about or services for Aspie kids in their suburbs at the time.
posted by topoisomerase at 4:43 AM on February 11, 2015

Asperger's Syndrome was actually not a clinically recognized diagnosis until the DSM-IV was published in 1994. Autism as a diagnosis was not formally introduced until the DSM-III in 1980, so by the mid 80s would have been recognized, but you would probably need someone who was an expert in the field to get the diagnosis.
posted by goggie at 6:37 AM on February 11, 2015

It is very unlikely that he would have been diagnosed with autism, more likely that he would have been seen as having a behavioral problem or mental disorder--bipolar, ADHD, schizophrenia, or thought to be cognitively delayed (I'm cynical, but rather think that any bright child without speech would have been labeled retarded then, and sometimes now). So, yes to the anti-psychotic meds, which have very unpleasant side effects that you can find detailed descriptions of if you are interested in describing that situation.

Also, how old is your fictional child? Unless he is quite young, it's possible he could have been fully or partially institutionalized in a hospital or a group home. Not uncommon.
posted by epanalepsis at 6:43 AM on February 11, 2015 [1 favorite]

Either they would be labelled as hyperactive, or (a precious few) get shunted into a gifted & talented program.
posted by wenestvedt at 7:52 AM on February 11, 2015

When I was growing up, my family performed respite care for individuals with disabilities (based on our experiences with an uncle with mental retardation). Around 1990 or so, we started meeting up with a man (T.) who was in his mid-20s at the time, with what I would term medium-functioning autism. Your character sounds very similar to him. Although at that point T. spoke just fine and responded to questions, he did stim a lot -- walking back and forth sort of ducking his head forward, shaking his hands a bit -- and he always seemed to be having a conversation with himself because he was very quietly reciting old TV shows. He hung out a lot at the library when he was not working his part-time clerical job, so I recognized him and his behavior even before we started working with him.

We also worked with another young man (K.) in his 20s who was diagnosed as autistic but to most people would appear mentally retarded. He had a very small vocabulary and was incredibly friendly, going up to people and trying to talk to them about things he liked (his watch, going off the diving board, etc.), but not to the obsessive-stereotype level that people sometimes associate with autism/ASD.

So autism was definitely a known thing for people in our (middle-class, Midwestern university town) community. If doctors could recognize autism in K. as well as the more-obviously-autistic T., it could work for your story. I was about 10 at the time, and I'm pretty sure I remember at least one or two kids in my elementary school who I knew were autistic (as opposed to just plain "developmentally disabled").

Another thing to consider is that Rain Man came out in 1988, so if your story includes that time period, that would likely be an easy thing to reference. But Raymond really fit that specific 1950s model of being institutionalized as a child (which is what happened to my uncle).
posted by Madamina at 8:57 AM on February 11, 2015

Next Stop, by Glen Finland. IIRC it has some vivid accounts of her family's struggle for diagnosis in the 80s.
posted by LonnieK at 10:59 AM on February 11, 2015

Response by poster: Thank you all. I really appreciate this!
posted by Countess Elena at 2:51 PM on February 11, 2015