Building the autistic community?

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Here, in the thread Information Links About Autism/Asperges.

That article contains the following very important point:


Obviously, relatively social autistic people like myself are going to be the ones in the forefront of any and all autistic community-building. We'll need to keep in mind the needs of the asocial folks too when seeking accommodations for autistic people.

As an asocial autistic... Who happened to have social and networking skills and experiences... No social anxiety to speak of... With connections on higher places on local scale...
Been born and grew up in a very social and collective oriented culture... Surrounded by serious social models that no amount of masking skills could pull it off.
Seriously, your 'foreign' NTs is comparatively 'aspergerian' from my 'native' NTs.

It's a big irony.
But heck yeah, I seriously relate to the "Hello friend, now go away" story. It is practically what I feel almost every time someone else is in the house -- even being attached that person and practically a living sanctuary...


Yet in all seriousness.
Asocial just means that; asocial. It doesn't necessarily mean aversive nor needy. It's not even really introversion or low social energy. It's just a trait that means having no social appetite or plain disinterest.
It's just being 'social' is simply a choice than a need. Yet considering the common circumstances of many autistics, many asocially inclined ones would prefer to be not social and not ever desire it.

Yet that doesn't mean asocial autistics cannot be just as social nor not able to relate those who don't.
They can choose to be open, they have the option to practice sociality and understand it on their own volition. But what are the odds that could happen though?


Heck my own case and most portions of my environment might've been 'built' for the socially inclined, yet my personal inclination is and remained asocial no matter what my predisposition and influence I've got.
My own choice here is that I won't be active in any community building or any networking cultivation. Not now, for now.

Then there's the opposite of my case, which seems to be plenty in this forum -- rationally inclined, external and concrete oriented, 'monotonous, cold and logical' alexithymics who would rather have the traits built for the socially inclined because their personal inclination is social. Some figured that they are more socially needy than they might've originally concluded.
If not, socially inclined autistics surrounded by a more monotonous and less socially inclined culture -- if not whichever NT culture they're into isn't very suitable for their individual autistic sociality.

You bring up good points, Mona such as: "lack of communication between sectors" and how there should be more neighborhood based groups.

"Community" is a relative term. An 'autistic community' could be a single group of people in a single place and remain autonomous. The members of that group would benefit but no one else would benefit from that group. And, one such group most likely wouldn't even know about another such group. There would be no continuity or inter-group communication.

To build a national or international community I envision a movement being started in which the founders develop an easy to follow template that anyone can use to start their own local autism group. This template would be a very specific "how to" guide with procedures, timelines, meeting outline examples, etc. A kit. The founders would maintain a website which could be used to disseminate information to the local chapters and the local chapters could devote a certain amount of time to discussing autism issues highlighted by the organization.

Picture an apolitical or at least non-hyper political ASAN creating a kit for any autistic person anywhere to use to start a local group which maintains its affiliation to the parent organization. I would hope for a brand new organization with the outlook of uniting autistics of all walks of life to find each other locally and support each other locally but using a similar format. Picture something so unified and similar that a person could move and easily find and hook up that same affiliated group in a new town, city, etc.

I've thought about starting a local autism group where I live. I've googled starting autism groups and from what I recall there was a website from an autism society in a different state that had some good practical advice but nothing step by step. I'm afraid I yearn for a step by step guide....

Let's start a separate thread about this, maybe in the "social skills and making friends" section. Also, free free to PM me.

I'm in process of starting a local group too, so maybe you and I can develop a template together from our own experiences.

Different people mean different things by the word "asocial." The author of the above-linked article seemed to mean an extreme introvert who finds even small amounts of social interaction to be very tiring. Other people may be "asocial" in other senses of the word, but the point of the above-linked article was to discuss the specific problems of those autistic people who find any and all social interaction to be very tiring.

Anaheim has about a dozen aspie/autism support groups, each is run by a young, upwardly-mobile professional psychologist.  None of them seems to be much more than "echo chambers" wherein the same opinions are repeated over and over, or "support groups" that seem to support only one or two members while everyone else sits around and either nods their heads in tacit approval or play with their smartphones.

I think it would be better to have groups with more focus and structure, with part of the meeting devoted to some pre-announced topic (preferably a different topic for each meeting) and part of the meeting devoted to general support for whoever needs it.

Also, a good leader is one who makes sure everyone has a chance to speak and is included, rather than letting any one or two people monopolize the discussion.

Imagine that you are one of those "good leaders" you mentioned.  Now imagine that every time the group meets, the same people simply must discuss their latest meltdown or some obscure traumatic incident from their childhood.  You, as the leader, must then either spend the group's time trying to deal with those same people (over and over again), or risk being dismissed for not doing so.

And dog forbid that anyone else would even hint that the traumatized individual should contain themselves long enough to give another person a chance to speak -- oh, no! -- that is both an insult and a threat to the traumatized individual, who then goes on a rant about freedom of speech and being told to shut up.

At this point in every meeting, I take it as my cue to leave.

I would say that when there are persistent incompatibilities between the needs of different members, then it's time for a peer-led group to split.

Ideally, groups would encourage at least some of their members to learn leadership skills, and train them in same, so that, when a peer-led group needs to split, it can.

If it can be accepted that such splits are inevitable and that they are something to be prepared for, even welcomed as part of the community's growth, then hopefully they can happen on non-hostile terms, with the peer leaders remaining in touch with each other (e.g. via some online-based leadership council, perhaps) and making mutual referrals as needed.

Then where are their socialities lie if they can afford sociality?
If they no longer have their anxieties, if they no longer had their negative social conditioning over their heads involving their past circumstances, if they no longer had a very limited stimuli intake stamina that held one back from being social?
Are they still 'asocial' instead of introvert then?


I could say the same with varying traits of autism.
Namely about the representation itself.
Think the leader -- or leaders, at least the most of them might had to go beyond the dichotomies to actually have this 'balance' between autistic representations... Instead of the loudest of them all, or the most notable of all. Or heck the most verbose of them all.

I've started a separate thread on one aspect of community-building: Learning LEADERSHIP skills: Not as hard as you might think?

According to the Spectrum News article Young adults with autism flounder in face of service gaps by Valerie Paradiz, 11 August 2015:

Alas the link to "Autistic Global Initiative" no longer works. Googling, I found two pages here and here about them, both dated 2014, and nothing more. Hopefully someone can start something like this again.

I happen to know Valerie Paradiz. She is the mother of Elijah, and is the primary author of the book "Elijah's Cup," about a young autistic boy who became Aspergian later in life.

Yeah my daughter has attended two of these here in Melbourne run also by "young upwardly mobile psychologists". Your description is identical to the ones here except the age group is around 13-14s.

They fail on two fronts. Firstly the children seem to sense the contrived nature of the gathering so the psychologists organises ice breaking exercises and group activities to involve the children. Afterward there is an opportunity for the children to interact over pizza. I notice many of the girls come with either an NT friend or sibling so go straight to them and talk/socialise ignoring other kids. I wonder why the parents even bother bringing them if the purpose was for their daughters to socialise? the others bring a smartphone and play video games. My daughter seems to be the only one there who legitimately is there to socialise.

The second failure is that these gatherings are sold as a networking opportunity for the parents to meet with other parents. Here the aspiration utterly fails. I have never met a single parent from the multitude of autism social groups I have attended whom has shown any interest in networking. I think to be fair parents are so self-absorbed in their children they seem to lack the social space to include new families. But there is also the ever present social class/comparisons thing that goes on. Most parents take one look at me and decide I'm not worthy of socialising with (despite being articulate and a good speaker). what can you do?

Then of course there's other parents who are too shy to interact and find me intrusive or unsettling when I speak to them. And then of course there are those who live vicariously through their other NT children and think they are somehow different to the rest of us.

Anyway...good intentions...not such great outcomes. For the psychologists it's a nice money earner and an opportunity to put something on their portfolio/resumes.

Probably because most autistic kids are averse to socializing in groups? IMO, to help autistic kids make friends, there needs to be an organized system for matching them up with other kids of similar cognitive profile who share their interests. What do you think?


Did any of these groups include any organized activities/ice-breakers, or at least group discussions, for the parents too?

I think most groups of people in general naturally tend to be cliquish unless they make a specific effort not to be.


Do you have any thoughts on how these groups could be organized better?

(Note: Parents/family/kids groups aren't the main topic of this thread, which is the autistic adult community; but it may be interesting to note similarities and differences between the parents/family/kids groups and the autistic adult groups.)

In an ideal situation you would have some type of application like a dating site which matches children on the spectrum based on their cognitive profile. However that would be reliant on people subscribing to such a platform so if there's a limited pool of willing participants we are back to square one.


No


Yes


I think they should be organically organised through parent groups rather than by professionals. We have Asperger associations here in Melbourne but they have weird requirements like a "diagnosis" to join. I stay clear.


Point taken...the "autistic community" only includes high functioning adults...message received loud and clear