Thursday, August 02, 2007

Where's Molly and the Rest of That Generation?

Book cover for Unstrange MindsAutism Diva has a thought-provoking post with many poignant links about the issues raised by Where's Molly? Where are the others?
One day in 1957, when Jeff Daly was 6 years old, his little sister Molly, disappeared.

Every night at dinner, he would ask his parents the same question, "Where's Molly?"

Every night, he says, he received the same answer: "Stop asking about Molly."

Decades later, Daly learned that his parents had sent Molly to a state institution nine days before her third birthday. Nearly 50 years later, Daly found his sister and made a documentary about his search.

"Since the movie, literally hundreds of people have come up to us and said, 'I had a [relative] that I remember my family talking about that was sent away. Do you know how we can find out about that person?'" says Daly...

There's a timeline that explains that in 1967 about 195,000 people, half of whom were children were institutionalized for being disabled, many of them would have been diagnosable as autistic by today's standards. Many of the were treated brutally and died in those institutions of the actions of drugs and of neglect and disease.
Reading the remainder of Autism Diva's post, I'm reminded how strange it is when I hear people ask, "If there is no epidemic of autistic spectrum disorders, where are all the older ASDs?". My mother's family was the lynchpin for many others. My grandmother held a 'come all ye' that was open to all friends, relatives and neighbours every Friday evening. My mother recalled that every weekend, although most people returned home after the evening, they had around 25 people staying over with them; the children would top-and-tail in the beds and others would sleep wherever they could fashion a sleeping space. The come all ye was primarily a social event but it also provided food and regular respite for relatives who were caring for those who needed 'special care and attention' (as it was known).

It sounds rather Gormenghast but my mother's childhood home had a large and comfortable basement level. An assortment of friends and relatives lived in the basement at various times. By report, they included people who had fallen on hard times (but social delicacy forbade discussion of this) along with those who didn't like noise, being surrounded by others, or busy visual scenes. They ate with the family as they chose, or took their meals down with them. Some of them had particular aptitudes and roles for which they were accepted and praised for their contribution to the household. One of the young men took over all of the endless mangling of the laundry and helped out with the extensive vegetable preparation that took place before every family meal (he would prepare the vegetables in the basement kitchen or would occasionally do it upstairs if my grandmother would promise not to sing, and my gregarious great-grandfather were not present). Another was known to be a dab hand at keeping the machinery running in the local dockyards.

When I was a child, most extended families had a couple of relatives who needed 'special care and attention' from other family members. Families who were separated from their extended families sometimes had children who 'disappeared' (this seemed to happen in new build estates that were created to meet the post-war housing shortage). Depending on their age, some of these children may have been to Children's Homes. Older children tended to disappear to Borstal (if male) or a 'home for wayward boys and girls'; others went to residential schools when they became too large or heavy to be managed at home by their mother.

A few years ago, I met someone who was horrified to discover that her husband had a sister whom he hadn't seen since he was a very young child. Somewhere in the early 60s, the sister had regressed when she was around two-years old. She spent hours at a time, running around the perimeter of the garden. She was terrified if people laughed, either in the same room or on the television. One day, the family took her to a residential home and thereafter, although the parents visited twice a year, her brother found it to be too upsetting and stopped seeing her. After the new bride found out about the sister, she started to visit her. Her husband accompanied her but would wait in the car during the visit; he was still unable to see his sister.

Autism Diva has provided a poignant example of Roy Grinker's argument in Unstrange Minds that there is no epidemic of autism. Kristina Chew presents a good overview of Grinker's findings. Both Chew and Grinker wrote an essay that is well worth reading: If There’s No Autism Epidemic, Where are all the Adults with Autism?
Just where might those 1 in 150 adults with autism be?

As surprising as it may seem, they are living and working among us.

Some live at home with their aging parents or siblings. Some live in group homes, or in institutions. Some have jobs and live independently. Many have the diagnoses given to them when they were children, such as mental retardation, seizure disorder, or schizophrenia. Recently, one of us met a severely autistic 60 year old woman in eastern Tennessee, who we’ll call Donna. Donna’s internist diagnosed her with autism ten years ago, when she was 50. Her mother said that Donna’s first label, in 1950, was “mentally retarded with emotional block and obsessive compulsive traits.” Today, for the purposes of public assistance, she is classified as mentally retarded.

There is no record anywhere to suggest that Donna is “autistic.”
Like Autism Diva, I wonder how many people like Molly there are in the UK. I wonder how many people are puzzled as to the identity of young children in photo albums.

Edited: August 4. Kristina Chew has told us about JP and other invisible or disappeared children.

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Blogger kristina said...

A friend who works for a large autism organization here in New Jersey has an adopted brother whose diagnosis is MR and behavioral/emotional disorder---which is what I think Charlie might have been given in previous generations, like Donna.

Thanks for this.

8:44 pm  
Blogger Shinga said...

It is interesting that so many people have been invisible in plain sight for so long...

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Anonymous Anonymous said...

I'm glad more and more people are recognizing what happened, and continues to happen, if not as often here in the US, certainly in other parts of the world.

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