The autistic community and the autism parents' community

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Mona Pereth
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03 Nov 2019, 8:05 pm

cyberdad wrote:
Her special interests are highly unique which is why I think she prefers mixing with boys (cars, trains, trucks, public transport, aeroplanes) and she is into all the technical stuff make, models, specs...flight paths, timetables etc)

Earlier you mentioned Aspie girls and NT boys. You didn't mention introducing her to any autistic/Aspie boys. But surely there are some autistic/Aspie boys who share the above interests and who also are her intellectual peers? Have you ever been able to introduce her to any such autistic/Aspie boys?


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cyberdad
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03 Nov 2019, 9:57 pm

Mona Pereth wrote:
cyberdad wrote:
Her special interests are highly unique which is why I think she prefers mixing with boys (cars, trains, trucks, public transport, aeroplanes) and she is into all the technical stuff make, models, specs...flight paths, timetables etc)

Earlier you mentioned Aspie girls and NT boys. You didn't mention introducing her to any autistic/Aspie boys. But surely there are some autistic/Aspie boys who share the above interests and who also are her intellectual peers? Have you ever been able to introduce her to any such autistic/Aspie boys?


In mixed groups she has has problems specifically with some Aspie boys. She has managed to get a tally of three (one primary aged) who have threatened to bash get aggressive because she found their voices or behaviour funny and (unfortunately) compulsively laughed at them. However, that was last year and there was at least one aspie boy who played with her (at least temporarily got on together). She seems to be maturing and is much more tolerant and respectful compared to when she first started highschool.



Mona Pereth
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03 Nov 2019, 11:55 pm

A historical note re: The autistic community (the organized or at least semi-organized network/subculture of autistic people) and its relationship to those autistic people who are not able to communicate in any language-based way:

In the earliest days of the autistic community, in the early 1990's, that relationship was much closer than it is now.

Back then, Asperger's syndrome was not yet in the DSM. So a "high-functioning" autistic person was usually someone who had had long developmental delays as a child, but then eventually learned to talk and/or write, and then eventually went to college. Therefore, many of these "high-functioning" autistic folks were people with memories of what it was like to be unable to communicate in words at all. Thanks to these childhood memories, the founders of the autistic community -- people like Temple Grandin, Jim Sinclair, and Donna Williams -- were able to give useful advice to the parents of severely disabled autistic children, and indeed frequently gave such advice at autism conferences.

For more about what this era was like, see Jim Sinclair's History of Autism Network International.

Since then, the autistic community has become more and more dominated by people who, under the DSM IV, would have been diagnosed with Asperger's syndrome -- meaning not just "high-functioning" (i.e., not intellectually disabled), but also no significant speech delay. Because Aspies, by definition, have had little or no delay in learning to talk, they are unlikely to remember what it was like to be a nonverbal child. Hence Aspies, for the most part, do not have the kinds of childhood memories that would enable them to give lots of useful advice to the parents of severely disabled autistic children.

It would be very nice if, within today's autistic community, there eventually emerges a group of "high-functioning" people who did have long developmental delays and who have clear memories of what it was like not to be able to communicate in words. Such a group would, like the autistic community of the early 1990's, be able to give lots of useful advice to the parents of severely disabled autistic children, and thus serve as a bridge amongst different factions of the autism community that now tend to be at odds.

[Personal note: I had too long a speech delay to be classified as an "Aspie"; I didn't start talking until about age 4. But, on the other hand, my speech delay wasn't long enough for me to remember it, either; my earliest memories go back only to age 4. So I'm not qualified to be a member of the above-described hypothetical group.]


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Mona Pereth
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04 Nov 2019, 12:58 am

cyberdad wrote:
In mixed groups she has has problems specifically with some Aspie boys. She has managed to get a tally of three (one primary aged) who have threatened to bash get aggressive because she found their voices or behaviour funny and (unfortunately) compulsively laughed at them. However, that was last year and there was at least one aspie boy who played with her (at least temporarily got on together). She seems to be maturing and is much more tolerant and respectful compared to when she first started highschool.

It's good she's getting more tolerant and respectful. Hopefully she has learned that if she wants other people to accept her as the weirdo that she herself is, then she had better learn to accept other people's harmless weirdness too.

Once she has fully learned that basic lesson, it seems to be that her best chances at friendship would be with those Aspies (of either gender) who share both her intellectual level (or close to it) and at least some of her strongest interests.


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cyberdad
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04 Nov 2019, 5:23 am

Mona Pereth wrote:
Once she has fully learned that basic lesson, it seems to be that her best chances at friendship would be with those Aspies (of either gender) who share both her intellectual level (or close to it) and at least some of her strongest interests.


I do realise having a presence of mind to think what other kids are thinking is often a challenge as she has a self-centred world view. But she keeps surprising me all the time with her insight. We parents often underestimate our children. I'm no exception.



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04 Nov 2019, 8:37 am

Mona Pereth wrote:
A historical note re: The autistic community (the organized or at least semi-organized network/subculture of autistic people) and its relationship to those autistic people who are not able to communicate in any language-based way:

In the earliest days of the autistic community, in the early 1990's, that relationship was much closer than it is now.

Back then, Asperger's syndrome was not yet in the DSM. So a "high-functioning" autistic person was usually someone who had had long developmental delays as a child, but then eventually learned to talk and/or write, and then eventually went to college. Therefore, many of these "high-functioning" autistic folks were people with memories of what it was like to be unable to communicate in words at all. Thanks to these childhood memories, the founders of the autistic community -- people like Temple Grandin, Jim Sinclair, and Donna Williams -- were able to give useful advice to the parents of severely disabled autistic children, and indeed frequently gave such advice at autism conferences.

For more about what this era was like, see Jim Sinclair's History of Autism Network International.

Since then, the autistic community has become more and more dominated by people who, under the DSM IV, would have been diagnosed with Asperger's syndrome -- meaning not just "high-functioning" (i.e., not intellectually disabled), but also no significant speech delay. Because Aspies, by definition, have had little or no delay in learning to talk, they are unlikely to remember what it was like to be a nonverbal child. Hence Aspies, for the most part, do not have the kinds of childhood memories that would enable them to give lots of useful advice to the parents of severely disabled autistic children.

It would be very nice if, within today's autistic community, there eventually emerges a group of "high-functioning" people who did have long developmental delays and who have clear memories of what it was like not to be able to communicate in words. Such a group would, like the autistic community of the early 1990's, be able to give lots of useful advice to the parents of severely disabled autistic children, and thus serve as a bridge amongst different factions of the autism community that now tend to be at odds.

[Personal note: I had too long a speech delay to be classified as an "Aspie"; I didn't start talking until about age 4. But, on the other hand, my speech delay wasn't long enough for me to remember it, either; my earliest memories go back only to age 4. So I'm not qualified to be a member of the above-described hypothetical group.]

Probably the autism communities became dominated by people with Asperger's because Asperger's is much more common than classic autism - it just wasn't really noticed before.
In adult life, the difference between HFA and Asperger's is historical - both are ASD level 1 under DSM-5, no definitive differences at the moment of such evaluation.
Yes, adult "high functioning" classic autistics could give a lot of useful insights but I suspect the characteristics you mentioned (HFA remembering their nonverbal time and willing to talk about it) are relatively rare combination.


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kraftiekortie
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04 Nov 2019, 8:40 am

I really have very little memory of my nonverbal time.

My memory is of feelings, rather than events, mostly.

The memories started becoming much clearer once I started to talk.



Mona Pereth
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04 Nov 2019, 9:48 am

magz wrote:
Probably the autism communities became dominated by people with Asperger's because Asperger's is much more common than classic autism - it just wasn't really noticed before.

Exactly.

magz wrote:
In adult life, the difference between HFA and Asperger's is historical - both are ASD level 1 under DSM-5, no definitive differences at the moment of such evaluation.

Actually they can both be either ASD Level 1 or ASD Level 2 under DSM 5. An autistic person could, for example, have no intellectual disability and no speech delay, but have extreme sensory sensitivities, extremely unusual body language, extreme difficulty with conversation, etc.

magz wrote:
Yes, adult "high functioning" classic autistics could give a lot of useful insights but I suspect the characteristics you mentioned (HFA remembering their nonverbal time and willing to talk about it) are relatively rare combination.

These days they are indeed relatively rare. Apparently they were, relatively, much more common in the autistic community that existed back in the early 1990's.


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Mona Pereth
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04 Nov 2019, 9:55 am

kraftiekortie wrote:
I really have very little memory of my nonverbal time.

My memory is of feelings, rather than events, mostly.

What kinds of feelings do you remember?

kraftiekortie wrote:
The memories started becoming much clearer once I started to talk.

Do you remember anything about the process by which you learned to talk?


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04 Nov 2019, 10:23 am

Mona Pereth wrote:
Actually they can both be either ASD Level 1 or ASD Level 2 under DSM 5. An autistic person could, for example, have no intellectual disability and no speech delay, but have extreme sensory sensitivities, extremely unusual body language, extreme difficulty with conversation, etc.
You're right.

Mona Pereth wrote:
magz wrote:
Yes, adult "high functioning" classic autistics could give a lot of useful insights but I suspect the characteristics you mentioned (HFA remembering their nonverbal time and willing to talk about it) are relatively rare combination.

These days they are indeed relatively rare. Apparently they were, relatively, much more common in the autistic community that existed back in the early 1990's.
I can't tell, I have no idea if there were any autism societes in Poland in early 1990s :D I don't know of any.


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04 Nov 2019, 10:30 am

I wonder how much is an inability to talk or a refusal to talk(for whatever reason) .


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cyberdad
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04 Nov 2019, 6:10 pm

I'm chuckling because my daughter remembered quite vividly visiting the zoo at 2 yrs of age and Disneyland at the age of 4 both at a time when she was non-verbal.

She says all she remembered thinking to herself was how fun and exciting both events were. I think it's likely that salient memories for any child (verbal or nonverbal) are linked to emotion/feeling rather than deep cognition/thought.



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05 Nov 2019, 2:04 pm

cyberdad wrote:
I'm chuckling because my daughter remembered quite vividly visiting the zoo at 2 yrs of age and Disneyland at the age of 4 both at a time when she was non-verbal.

How old was she when she learned to talk?

Does she remember anything about how she learned to talk? (If so, please consider writing a book about it! Or at least an article or two for some autism-related website.)

cyberdad wrote:
She says all she remembered thinking to herself was how fun and exciting both events were. I think it's likely that salient memories for any child (verbal or nonverbal) are linked to emotion/feeling rather than deep cognition/thought.

I have some decidedly cognition/thought-oriented memories from age 5 or so.

For example, I remember noticing that my sister's glazed baby shoes were a lot smaller than mine. Hers were truly baby-sized, whereas mine were only a little bit smaller than the shoes I was currently wearing at the time. I remember being told that this was because I was given my first shoes at a later age than my sister was. (I now realize this must have been because I learned to walk at a much later age than my sister did.) At the time, I remember thinking of the relative baby shoe sizes as a paradox: My sister was much bigger than me (due to being much older than me), yet her baby shoes were much smaller.

I also have memories of my mother teaching me about calendars. I remember there being two months in a row, in late winter, that both began on a Friday. (These must have been February and March 1963, when I was 4 going on 5.)


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06 Nov 2019, 1:40 am

Mona Pereth wrote:
How old was she when she learned to talk?
Does she remember anything about how she learned to talk? (If so, please consider writing a book about it! Or at least an article or two for some autism-related website.)

She was about 18 months when she could say words/write; if you check the non-verbal parents thread I mentioned she was hyperlexic for letters/words/numbers and at 18months could spell hippopotamus and elephant. But no speech.

She had echolalic speech at 5 and could read complex books like Harry Potter. She didn't really start conversations (short ones) till she was 8.

Mona Pereth wrote:
I have some decidedly cognition/thought-oriented memories from age 5 or so.
For example, I remember noticing that my sister's glazed baby shoes were a lot smaller than mine. Hers were truly baby-sized, whereas mine were only a little bit smaller than the shoes I was currently wearing at the time. I remember being told that this was because I was given my first shoes at a later age than my sister was. (I now realize this must have been because I learned to walk at a much later age than my sister did.) At the time, I remember thinking of the relative baby shoe sizes as a paradox: My sister was much bigger than me (due to being much older than me), yet her baby shoes were much smaller.
I also have memories of my mother teaching me about calendars. I remember there being two months in a row, in late winter, that both began on a Friday. (These must have been February and March 1963, when I was 4 going on 5.)


Hmm now that I think about it my daughter can recall observations she made and even the date/time from her non-verbal days however she tends to define these in terms of how she felt rather than what she thought.