Reflecting on"The Missing Generation"

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Although the generation of now-elderly autistic people is still underacknowledged, the book Neurotribes led to more articles like this, which not only restore the place of this misdiagnosed generation in the wider context of autism history, but also offers a personal insight into what some people in that cohort experienced, and how it affected them.

https://spectrumnews.org/features/deep- ... eneration/

If you know of similar articles, please post them here. If you were one of the people who personally experienced what the article described in the 1960s (or thereabouts) and you feel able to, please share your story here. It is a story little told by actual survivors.

Thanks for the article.

nice post

Thank you for this, B19.

Thank you x 3 for the feedback. It really makes me ponder about the great mass of the "never discovered" people in that generation and their lives, their suffering, their joys and their sorrows. My guess is that we don't know anything at all about 99% of them (or even less than that). For me, the invisibility of their unknown and undocumented presence is haunting, like a nameless set of ghosts.

Also I question whether the degree of progress at the current time in understanding AS as a complex dimensional actuality is as real in fact as it is in claims made. (Who makes these claims? Who benefits most from making these claims? So much to ponder... ) I would like to see some innovative research that tested the understanding depth and knowledge width of clinicians who act in a diagnostic capacity. It would be interesting to see how many gave credence to debunked theories, myths, false stereotypes, poorly based research claims and so on.

There are still (I think) immense lessons to be learned from the past and the present, missing information that impacts on the present and the future.

A link that is quite interesting to me and indirectly related to the thread topic:
http://www.ncbi.nlm.nih.gov/pubmed/11401656

Something else in that to ponder, so I ponder away...

Yes B19,

You know what, people in our generation may well also be the lost generation, there may well be fundamental principles about the way people relate to each, about how the mind works which have gone ignored by the neurotypical research community. I live my life in the belief that this is the case and hope some day I might be able to make a difference.

Thank you for the article B19. Even though this is not my generation they're talking about, mine is almost a bridge generation of sorts, so a lot of the experiences the man in the article faced are pertinent to my generation as well. We're not the missing generation, but we're not the "found" one either.

I myself was labelled with bi-polar, anhedonia, and OCD before a specialist diagnosed me with autism. So I can certainly relate to at least a portion of the story.

Thank you both for that input. The past always informs, and impacts on, the present (as you both contend). It's not a matter of "that was then, it has nothing to do with what happens now" (which is an excuse often used to cover up or deny present forms of ignorance).

I was born in 1970 and diagnosed in 2008.

I think the biggest impact of late diagnosis is my fundamental lack of trust in society, in anyone. I know that people can have the best of intentions and still do you harm.

This is why the current conventional wisdom that Aspergers/Autism is an over diagnosed trendy condition drives me nuts. Even if this is true for the younger generations, I still firmly believe it is very much under diagnosed in the older ones. But our generation still has to deal with the consequenues of the "fad" , suspicion of excuse making and fakery (which is what they said about us when the knowledge was not literally there), clinitions weary of diagnosing people and looking to undiagnose people with the "trendy" condition etc.

We are also dismissed and denied by people with the agenda of pushing the idea of an Autism "epidemic" . They ask "Where are the 50 something autistics?" and state "There were no autistics when I was in school". That is because we were and are "missing" or dead.

Since they do not have knowledge of how to asses us and there are little known "evidence based" "gold standard" treatments for our demographic some do not diagnose of refuse to asses us us because "we do not need a label" . As middle age and older adults this should be our choice but often isn't.

Diagnosed at age 57 born in the fifties.
It made things easier for awhile. Now it's the same.
Ignored by the local help group as their focus is parents of kids with Autism.

Forever on my own.

I walk.

One step forward.

Followed by the next.

I will get there.

Yes, this is my generation. It was challenging to grow up without supports, sometimes hidden away in windowless basements of schools in special Ed classrooms, other times completely spaced out or melting down in mainstream class without supports. It was challenging as an adult trying to understand why I was in hospital so much. In hospital a long time, many times. Also, given many medicines for conditions I did not have. Restraints and immobilized with straps during meltdowns. Homeless on the street for a time also happened, because being too trusting, I lived with someone who was unstable, who threw me out when I was accidentally too honest. I do not understand when things should go unsaid around certain people. Trying to live with the PTSD flashbacks from undiagnosed Sensory Processing Disorder was challenging.

Being hit by a car twice (once going to hospital), I did not know I had wandering/elopement, or how to manage it. I tried to work, but was fired from each job due to shutdowns and wandering away from tasks. One day, I wandered mindlessly in a shutdown right off a 25ft high warehouse platform. That was a life-changing accident from the wandering/elopement.

Now, I am diagnosed. I am 50. When I lose speech, I can use my AAC device. I have my own apartment, but have supports to help me like visual schedules to help me get dressed, shower, make tea. I have a wonderful support team now. They do not scold or blame me if I have behavioral challenges. They know that behavior is communication. They try to look at ways in which the situation has outstripped my neurology's ability to cope, and help me learn new strategies. Better still, when I say a situation is too much, they respect my sense of what I can and cannot tolerate. I am a person to them, not a project. I love that a lot.

I can not plan my day, plan a sandwich, or plan my life. But, I now know that I matter, my voice matters. Support staff treats me with kindness, respect, patience, and humor. I am learning to regulate my nervous system with OT sensory input such as swinging on swings, using a resistance band, bouncing and hopping, swimming, etc. I am learning to manage meltdowns, to use my AAC to communicate when I can't speak, to wear an autism ID band if in the community, and I am learning to accept the supports offered. This is a new concept for me. I feel grateful.