Comments on: Where Are the Elders with Autism? Reflections Upon Reading Fred Pelka’s What We Have Done

By: Ariane Zurcher

Ariane Zurcher — Mon, 12 Nov 2012 16:14:02 +0000

I’ve just purchased Pelka’s book. Thank you so much for this, Rachel. My mother is the geneologist in the family, I intend to ask her about a few of my female relatives who I know were institutionalized, (though it was always explained to me that they had been because either husbands or family members “wanted them out of the way.”)
Really looking forward to reading Pelka’s book.

By: Linda Mad Hatter

Linda Mad Hatter — Mon, 12 Nov 2012 02:59:02 +0000

I’m 34 and was diagnosed this year with Aspergers, after being misdiagnosed for 17 years with various mental illnesses. Having undiagnosed Aspergers as a child did lead to my developing Complex PTSD due to the treatment I received (normal for most kids perhaps, but devastating to someone with ASD). In another world, maybe one of my suicide attempts would have worked, or maybe I would be classed as “lazy” or “dumb” or “weird”. As a female, it’s more likely that I may have just grown up, become a mother and stayed at home where I could adjust my environment the way I needed to without anyone being any the wiser. Who knows?

Everything about ASD is far more complex than most give it credit for. Whether this is from laziness, apathy, stupidity or something else entirely intrigues me, but for whatever reason, that is how it is at the moment. Thankfully a few adults with ASD are starting to speak out (technology has been GREAT for us ), and perhaps in another 50 or so years, things may change. People like Anne will always be around however – they need to “blame” something because they can’t accept the idea that ASD is a difference and not a deficit until NT’s make it so, and vaccines are an easy target.

This was a great read. Thank you

By: Rachel Cohen-Rottenberg

Rachel Cohen-Rottenberg — Sat, 10 Nov 2012 05:44:24 +0000

I agree. I didn’t have the opportunity to go into all of the many problems with assuming that autism (or any condition) is a static phenomenon. As with any condition, nothing remains the same — sometimes things get better, and sometimes they get worse. The problem with diagnostic categories, of course, is that they hide the variation that happens in a day, a week, a month, a year, and a lifetime. It’s as misleading to compare autistic children and adults as it is to compare non-autistic children and adults. Most people change from childhood to adulthood, even if their developmental trajectories are different from what is considered normative.

By: adkyriolexy

adkyriolexy — Sat, 10 Nov 2012 05:13:54 +0000

There is also the fact that “severe” autism is not a lifelong condition. If many autistic children are nonverbal, but few older autistic adults are, is not the most logical explanation “most autistic children gain speech at some point before adulthood”? That is not to deny the factor of institutionalization as well, and institutionalization (and the death and disease therein) is surely a significant aspect of a shortage of free older autistics… but there are quite a few problems with the logic of contrasting child-autism and adult-autism as if they were distinct conditions.

By: Savannah Logsdon-Breakstone

Savannah Logsdon-Breakstone — Fri, 09 Nov 2012 19:09:21 +0000

I’ve met a ton of elderly Autistics- because I do advocacy outreach in Institutions, where a large number of those remaining there are elderly individuals who entered as children, whose parents were told at the time to ignore them. A few lucky ones have siblings who found out and are occasionally involved in their lives or who may be working on them moving out.

Additionally, my grandmother (who is Autistic) has a partner who worked in institutions starting during the time period specified- she worked around 30+ years primarily on the men’s Autism ward. Trust me, the numbers from when she started were much higher than when she left.

By: Elizabeth McClung

Elizabeth McClung — Fri, 09 Nov 2012 12:15:18 +0000

Wow, um Ms. Dachel seems quite angry for someone declaring themselves incapable of doing basic research. I don’t suppose she has the same arguement regarding Downs’ Syndrome, and demanding 80 year olds? In Canada you simply have to follow the Eugenics records of somewhere like Alberta (over 5,000 sterilizations until the 1970′s) – look in the nunneries, in the farm families, and the kind of institutions the CIA used when feeding radioactive materials in breakfast (likely another reason they didn’t live as long). My great uncle Morey and aunt Edith both spent most of life non-verbal and stimming. Indeed, stimming is so, so much a part of culture that parents when I grew up were warned specifically against letting children do it, along with staring. “Three seconds” was the rule and I was frequently hit for breaking it.

In both California and West Coast Canada, I had significant interaction with children with disabilities in and out of class, visual and not. It was part of the way I thought but also the attraction of not speaking for days, just communicating, which drew me into the deaf community (when sound=pain, you know you aren’t deaf, but there is no name for it. I went to four different schools and had a consistant level of exposure (about 6-8% for visual disabilities).

‘Retarded’ students were sent to another school. One I was unable to attend beyond the first day due to the noise in transport and school. At ‘regular’ school teachers kept me in, due to the pain of noise during the lunchtime. I also would simply walk out of class and stand in the hall – I’ve talked to several who also did this growing up. It isn’t a metastudy but they do exist Ms. Dachel.