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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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.



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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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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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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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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.



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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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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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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.



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14 Nov 2020, 8:21 pm

Mona Pereth wrote:
1) The (mostly NT) autism professionals' community.
2) The (mostly NT) autism parents' (and families') community.
3) The autistic community, i.e. the community of (mostly adult, mostly relatively mildly to moderately disabled) autistic people.

If a person is, as yet, incapable of communicating in any language-based way at all, then that person simply cannot (however much we may wish otherwise) participate in a community of any kind, at least not directly. That's not a "division" that I or anyone else "created" via an "exclusion criterion"; it's just a harsh reality.


Sorry I only just saw this (almost a year late) as you keep linking your discussions to alternate threads which is irritating.

I'll just focus on these two points you made to highlight my earlier point about "how many autistic communities are there"?but before I do I'll just say that I have no intention in i) derailing your threads or ii) preventing the creation of an autistic community.

Firstly have you considered the vast majority of people in the metaverse that is the "autistic community" exist online? For reasons that are too diverse to tackle in one post most autistic people will never meet in person. These could be due to geographical separation or other reasons like sensory issues or social anxiety. Some of these barriers could be overcome but they may take some concerted effort and/or financial/time investment. So realistically Alex has already achieved one of your goals already which is to create an online autistic community who have the luxury to interact without fear or favour anonymously and without testing their sensory limits or anxiety over meeting new people.

How big a face to face community can you get before it reaches a critical mass? I have tried to create parent communities and failed miserably because of the most minor issues. I'm not saying autistic people can't create communities but its more realistic that these remain online (at least for now).

Secondly you identified three communities. Have you considered there may be 8 (I can think of more). Try this for starters;
1) The (mostly NT) autism professionals' community.
2) The NT parents' (and families') community of high functioning children.
3) The NT parents (and families) community of moderate-low functioning children
4) The autistic parents (and families) community of autistic children
5) The autistic community, i.e. the community of (mostly adult, mostly relatively mildly to moderately disabled) in a long term relationship
6) The autistic community, i.e. the community of (mostly adult, mostly relatively mildly to moderately disabled) who are single and live with parents
7)The autistic community, i.e. the community of (mostly adult, high functioning, independent/working) autistic people in a long term relationship
8 ) adult high functioning autistic people not married or in a relationship who may or may not be living with parents

What you haven't factored is i) parents of Aspies have nothing to share with parents of lower functioning kids in terms of experiences ii) parents of aspies don't want their kids mixing with kids lower functioning than themselves (I know this from experience) iii) High functioning adults want to network with other high functioning autistic adults who have families of their own, jobs, careers iv) mild-moderate disabled who are single will have nothing in common with their peers who are in relationships v) people who live with their parents will have little in common with people who are independent

I have not even factored age or gender into the equation. Many males are too awkward to form friendships with females and conversely many mildly disabled females do not want to be friends with males who are on the spectrum and easily blend in with NTs (its been known for sometime that we are underestimating the true number of females on the spectrum) and while there are many on WP indicating they want to network with other autistic people there perhaps larger numbers who don't want to. Even for males I suspect if you ask they probably prefer to be able to make friends with NTs (I suspect many on WP have this feeling but are too shy to admit it).

Here lies many conundrums that should be factored when creating a "community". My only advice going forward is go into this with your eyes wide open.



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15 Nov 2020, 9:54 am

Above, you replied to my post here:

cyberdad wrote:
Firstly have you considered the vast majority of people in the metaverse that is the "autistic community" exist online? For reasons that are too diverse to tackle in one post most autistic people will never meet in person. These could be due to geographical separation or other reasons like sensory issues or social anxiety. Some of these barriers could be overcome but they may take some concerted effort and/or financial/time investment. So realistically Alex has already achieved one of your goals already which is to create an online autistic community who have the luxury to interact without fear or favour anonymously and without testing their sensory limits or anxiety over meeting new people.

There already exist plenty of local groups (which met in-person before the CoViD crisis and will hopefully meet in-person again). Here in the U.S.A. at least, almost every major city has both at least one autistic/Aspie peer support group and at least one professional-led autistic/Aspie support group.

The existence of these groups, plus the existence of Wrong Planet and a few similar online forums, is an important achievement, but nowhere nearly enough in my opinion. (See Longterm visions for the autistic community on my website.)

cyberdad wrote:
How big a face to face community can you get before it reaches a critical mass? I have tried to create parent communities and failed miserably because of the most minor issues.

I'm sorry to hear you weren't successful, but plenty of parents' groups do exist. For example, here in the U.S.A., the Autism Society has affiliates in almost every major city. Most affiliates include a parents' group, and many also include a (professional-led) group for autistic adults. Here in NYC we apparently don't have an Autism Society affiliate for whatever reason, but we have several other groups that fill a similar niche.

cyberdad wrote:
I'm not saying autistic people can't create communities but its more realistic that these remain online (at least for now).

Of course they'll have to remain online during the CoViD crisis.

But we need locale-based groups as well as forums like Wrong Planet that are for people from all over the world. Even after the CoViD crisis, it may be best for some locale-based groups to continue to function primarily online while holding occasional in-person events.

cyberdad wrote:
Secondly you identified three communities. Have you considered there may be 8 (I can think of more). Try this for starters;
1) The (mostly NT) autism professionals' community.
2) The NT parents' (and families') community of high functioning children.
3) The NT parents (and families) community of moderate-low functioning children
4) The autistic parents (and families) community of autistic children
5) The autistic community, i.e. the community of (mostly adult, mostly relatively mildly to moderately disabled) in a long term relationship
6) The autistic community, i.e. the community of (mostly adult, mostly relatively mildly to moderately disabled) who are single and live with parents
7)The autistic community, i.e. the community of (mostly adult, high functioning, independent/working) autistic people in a long term relationship
8 ) adult high functioning autistic people not married or in a relationship who may or may not be living with parents

What you've identified in the above list are demographics, not communities (organized or semi-organized subcultures).

As far as I am aware, none of the parents' groups specifically limit themselves to NT's, and I can't think of any legitimate reason why any parents' group should exclude parents who are themselves on the autism spectrum -- although the groups are, of course, NT-dominated, and autistic parents are likely to have the usual difficulties autistic people in general tend to have with fitting into NT-dominated groups.

On the other hand, there clearly is a need for support groups (in-person or online) for autistic parents (regardless of whether their children are on the autism spectrum or not). As far as I am aware, no such groups exist. Alas, autistic parents are likely to be (more so than autistic adults in general, and more so than NT parents) way too busy and overwhelmed to be able to take the initiative in starting a peer-led group, especially an in-person group. So, unfortunately, it will probably be a long while before such groups come into existence. (But, if anyone knows of such a group, please tell me so I can list it on my website.)

cyberdad wrote:
What you haven't factored is i) parents of Aspies have nothing to share with parents of lower functioning kids in terms of experiences

Here in NYC, we have a bunch of different parent's groups, with different groups apparently specializing in different severity levels of their children's disability. That's a natural division among the parents, up to a point at least. (The parents' groups around here also vary in terms of how science-based they are.)

cyberdad wrote:
ii) parents of aspies don't want their kids mixing with kids lower functioning than themselves (I know this from experience)

That's unfortunate, but consistent with the afore-mentioned division among the parents.

cyberdad wrote:
iii) High functioning adults want to network with other high functioning autistic adults who have families of their own, jobs, careers

And indeed as I've said repeatedly, we need career-oriented groups for work-capable autistic people who work or desire to work in particular categories of professions/occupations/jobs. (See Autistic Workers Project.)

cyberdad wrote:
iv) mild-moderate disabled who are single will have nothing in common with their peers who are in relationships

The Aspie/HFA support groups around here do include both single people and people in relationships, and, as far as I can tell, there isn't a feeling of that we have nothing in common (although maybe I'm blinded by couples privilege on this point?).

At some point in the future it would probably be a good idea for couples' groups and singles' groups to emerge, but it's not true that we have nothing in common.

There already do exist plenty of groups for NT partners of Aspie/autistic people. Many, though not all, of these groups are legitimate and constructive. (Others, alas, seem to be anti-Aspie/autistic hate groups.)

cyberdad wrote:
v) people who live with their parents will have little in common with people who are independent

Again we have both in our local NYC peer support groups.

cyberdad wrote:
I have not even factored age or gender into the equation. Many males are too awkward to form friendships with females and conversely many mildly disabled females do not want to be friends with males who are on the spectrum and easily blend in with NTs (its been known for sometime that we are underestimating the true number of females on the spectrum) and while there are many on WP indicating they want to network with other autistic people there perhaps larger numbers who don't want to. Even for males I suspect if you ask they probably prefer to be able to make friends with NTs (I suspect many on WP have this feeling but are too shy to admit it).

Groups of autistic people will likely become more attractive to more autistic people when the groups have more to offer. We need more than just generic support groups. (Again, see my Longterm visions for the autistic community.)


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