100,000 children with intellectual and developmental disabilities were housed in 162 state facilities—some say as many as 200—-across the US in 1967. This was the “height of institutionalization,” notes today’ s The story, Families get help finding loved ones lost in institutions, focuses on the efforts of some families seeking to reconnect with relatives who were sent to institutions many, many years ago. The ARC The Arc (formerly the “ARC,” which stood for Association for Retarded Citizens—see comment below) has created the Find Family Registry to help families find relatives who were thought lost and to reconnect.

Jeff Daly, who last saw his sister, Molly, when he was six years old in 1957, has made a film about his efforts to reconnect with his sibling, Where’s Molly?. Molly, born with a club foot and a lazy eye, was three when she was sent away to live at Fairview; the story notes that

“When she was around 2, records show, doctors amended her diagnosis to “profoundly retarded,” a characterization that Daly doubts but has no proof to contradict.”

After the death of his parents in 2004, Daly found the records his father had kept and called the group home that Molly now lives in.

Among those 100,000 children living in institutions in 1967 was playwright Arthur Miller’s son, Daniel, who was born with Down Syndrome in 1962 and immediately placed in the Southbery Training School in Connecticut. Miller did not mention Daniel in his autobiography, nor did he publicly acknowledge him, and he visited his son “seldom or never.”

Among those 100,000 children was Jim’s first cousin, JP, who I have always been told is so “severely mentally retarded” that he cannot talk or walk or sit up or feed himself. He was the closet to Jim in age and Jim has often told me of how his aunt would dress JP up in a bow tie and sit him up during holiday parties. As a teenager, Jim went with his uncle to visit JP after he had been institutionalized—-Jim describes him to me as “just lying there, in a crib kind of bed, with a net over him.” JP’s father passed away years ago, and his mother visits him—-and I have told Jim repeatedly, that I would like to meet JP, who lives in the same institution, not at all far from where we used to live. “So depressing,” has been one response when we have mentioned our wanting to visit JP.

I hope we can visit soon. It’s been too long already, for JP and for how many others.

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    • mcewen

      How extraordinary!
      Best wishes

    • M’sDad

      This, I think, is a potentially interesting piece of the puzzle (!!) of “where are the adult autistics”, at least as far as individuals who are not as self-sufficient as those whom Kristina flagged in a previous post (my html skills aren’t good enough to link back — Kristina, can you provide that?).

      When those who remark that they didn’t encounter autistic kids while they were growing up (or in their medical practice 20 years ago, or whatever) use that information to deduce that the presence of more autistic kids in “mainstreamed” situations nowadays is evidence of an “epidemic”, they are possibly not taking into account these “disappeared” individuals.

      Since there’s plenty of back-and-forth about autism and mental retardation — with, as I understand it, increasing opinion that non-verbal autistics are not mentally retarded, or at least not as “mentally incapable” as they have been stereotypically branded by some — I wonder if JP could have been labeled “low-functioning autistic” rather than “profoundly mentally retarded” if a different doctor, at a different time, had been responsible for his labeling.

      Certainly it would be interesting to see these statistics correlated with the “epidemic” vs. “better/changed diagnosis” debate.

    • Club 166

      One slight correction. The Arc used to be known as The ARC (for Association for Retarded Citizens, as you pointed out). They officially changed their name to The Arc (I forget the exact date, but believe it was in the 90′s).

      The new name is not and acronym for anything, but retains the same spelling for name recognition.

    • FXS mom

      I never knew that club 166…thx for sharing.

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    • HeatherS

      I, of course, don’t know you from a bar of soap, except what I’ve been reading over the last week or so, so please forgive me if this is too bold, but…. If I were in your shoes, with a relative in a nearby institution, I would run, not walk, to that institution as fast as I could. If there’s one thing my last few weeks of research and enlightenment into the world of neurodiversity have taught me is that you have no idea what that young man is capable of, how delighted he may be, no matter how little he is able to express is, to have visitors, to know that his life is not simply to wait around to die. I implore to to visit him as soon as is reasonably possible.

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