Your gripes about peer-led autistic adult support groups?

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Fnord
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09 Aug 2021, 7:12 pm

Putting up a website full of complaints and "shoulds" may be more than I have done, but not by much.


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Mona Pereth
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09 Aug 2021, 9:49 pm

Fnord wrote:
Putting up a website full of complaints and "shoulds" may be more than I have done, but not by much.

This is in response to what?

If you're referring to my website, it contains more than just "complaints and 'shoulds'." And I plan to add more and more useful info, including quite a few pages containing hopefully well-organized collections of links to useful resource, of various kinds, for adults on the autism spectrum.

If you're referring to someone else's website, which one?

(See also my reply to you here.)


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09 Aug 2021, 10:45 pm

Summer_Twilight wrote:
My other problem with some of the support groups today is that they are becoming too political.

I think it's best to have separate groups for the political stuff, for those who are interested, and to try to keep controversial autism-related topics out of a general support group (except to allow announcements of meetings of the autism politics group, along with other groups some of the support group's members might be interested in).

Summer_Twilight wrote:
While self-advocacy is important, I don't really care about that stuff.

I do think occasional "self-advocacy" topics, e.g., brainstorming the best way to ask for accommodations in one's workplace, may be relevant to the main support group.

Is that what you were referring to as "self-advocacy," or something else?

Summer_Twilight wrote:
I just want a support group where I can be around other people who I can relate to. I am also more interested in learning about the social skills, learning how to keep a job, etc.

Insofar as an autistic peer-led support group deals with social skills, I think it's probably best to focus on the specific subset of social skills that I call "autistic-friendly social skills" -- as distinct from blending in with NT's. (If someone wants to learn how to act more like an NT, that's probably better accomplished in an acting class.) It so happens that what I call the autistic-friendly social skills are also useful in many workplaces.

Summer_Twilight wrote:
The people in these "Self-advocacy groups" can also be very mean and demanding. They also seem to take everything that could help them and throw a big tantrum.

I don't understand that last sentence. Does it contain a meaning-changing typo? Perhaps missing a crucial word or two?

Summer_Twilight wrote:
On top of that, it's a sin if you want to be involved in the activities with Autism Speaks as way of raising acceptance. If you are part of that group, then you are the enemy of these self-advocacy groups. I don't like that.

Autism Speaks has gotten much better than it used to be, and this should be acknowledged IMO. Yet there are still some good reasons to be wary. But that's a topic better discussed in the Autism Politics, Activism, and Media Representation section than here.

Summer_Twilight wrote:
It also seems everyone is always out to get them.

For example?


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AquaineBay
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09 Aug 2021, 11:34 pm

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What kind of "autism group" was this? Autistic peer-led or professional-led?

Mine is professionally led by counselors and other people with different degrees. So even in professional groups you may not get everything you want out of the group.

I have to note one thing though Mona Pereth, you mention a lot about having all these separate groups for all of these separate Autistic people, who is going to fund all of this stuff in the real world? Secondly, having all these separate groups just separates all of us as a whole instead of coming together and I feel in the end will just become a war of which people with autism has it worse than the other. There is also the fact that in real life you will meet people with different personalities, problems, likes/dislikes, etc etc, I feel that having multiple groups like that is just not reflective of what real life is like. The world doesn't cater to every persons needs and I wouldn't expect any group to do the same as that is too taxing on people to figure out what each and every person on the spectrum "problems" may be. Even though I'm in a professional setting, some on the spectrum are still left out because they can't make all these different groups to cater to every person and just have to go with a more general "all-around" approach on giving a place for autistic people to feel safe and feel heard.


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09 Aug 2021, 11:45 pm

Nades wrote:
Yip. Immature, insecure and controlling. It's often the immature causing the most drama yet they seem to think they're capable of "controlling" the group. An immature aspie is not in the slightest equipped to control a group or be a dominant member if they have precious little practical life experience and lived a sheltered life.

Certainly, general "practical life experience" is helpful -- as is experience, more specifically, of leading a group of some kind. It's probably best to start off by leading something relatively low-stakes, like a hobby-oriented group, before moving on to lead/facilitate a support group or a career-oriented group.

Nades wrote:
For the sake of everyone's sanity in such groups, there needs to be a fairly thought out and objective pecking order due to how widely varied the capabilities of different aspies can be. You can't just shove anyone at the top of the pecking order. It's obvious an aspie who can drive a minibus, is successful with work or whatnot, doesn't need his/her parents when outside the house for support and doesn't go into perpetual meltdowns is far better suited and mature for being one of the group leaders than an aspie who needs constant support and will crumble when under the slightest bit of pressure.

Again I don't think car driving ability is all that terribly relevant, but I agree that a leader does need to be someone who won't "crumble when under the slightest bit of pressure."


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10 Aug 2021, 2:25 am

AquaineBay wrote:
I have to note one thing though Mona Pereth, you mention a lot about having all these separate groups for all of these separate Autistic people, who is going to fund all of this stuff in the real world?

Currently, during the pandemic, all the groups led by members of the Autistic Peer Leadership Group (including APLeG itself) meet via text-based chat using a free Zulip account. Our only expense is the Meetup site.

After COVID finally gets sufficiently under control, some groups will start meeting in-person while others will continue to meet via chat.

At that point, the main topic-focused discussion group (which focuses primarily on what I call "autistic friendly social skills") will probably meet in a diner, as it did before COVID -- until such time as it has at least a dozen regularly-attending members, at which point we can hopefully afford to rent space somewhere. Money for this will hopefully be contributed by members and/or their families.

In the future, as our cluster of groups grows and we become more established (e.g. if and when the Autistic Peer Leadership Group becomes a formally organized nonprofit org), we might perhaps be able to apply for grant money for some projects. But there's no need for that at the present time, and we'll cross that bridge when we come to it.

AquaineBay wrote:
Secondly, having all these separate groups just separates all of us as a whole instead of coming together

If each group meets only once per month, and if meetings are scheduled to avoid conflicts as much as possible, especially if only some of the groups meet in-person while others continue to meet via chat, then the groups will overlap heavily with each other. Hopefully also, the leaders will all stay in touch with each other via the Autistic Peer Leadership Group, and will refer their own members to each other's groups as appropriate.

Thus, although the groups will be distinct, there can still be a sense of being part of a common community.

AquaineBay wrote:
and I feel in the end will just become a war of which people with autism has it worse than the other.

We haven't had such a "war" so far. If and whenever it does happen, hopefully our emphasis on conflict resolution skills will help us deal with it.

AquaineBay wrote:
There is also the fact that in real life you will meet people with different personalities, problems, likes/dislikes, etc etc, I feel that having multiple groups like that is just not reflective of what real life is like.

Depends where you live. It's certainly possible in a big city like NYC. It will probably take longer to happen in smaller metropolitan areas.

AquaineBay wrote:
The world doesn't cater to every persons needs and I wouldn't expect any group to do the same as that is too taxing on people to figure out what each and every person on the spectrum "problems" may be.

Small-but-growing nonmainstream subcultures routinely do spawn groups that cater to more and more people's needs and desires. I've been involved in enough of them to know this.

Anyhow, the more groups there are, and the more networked these groups are (e.g. via a common leadership training group), the easier it will be for leaders to refer their members to groups that might meet their needs better.

AquaineBay wrote:
Even though I'm in a professional setting, some on the spectrum are still left out because they can't make all these different groups to cater to every person and just have to go with a more general "all-around" approach on giving a place for autistic people to feel safe and feel heard.

The problem here is a shortage of psychotherapists and social workers who are knowledgeable about adult ASD. Hopefully this shortage will eventually resolve itself. As it does, the professionals will be motivated to stake out more and more sub-specialties. This may take a frustratingly long time to happen, but it almost certainly will eventually happen.


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10 Aug 2021, 3:16 am

StrayCat81 wrote:
AquaineBay wrote:
A gripe I have is that in groups(that I have attended) forming friends and relationships seems to not really be a big priority. You don't really get help in that aspect and kinda left to your own devices to figure out how to do that.

I think with this kind of thing, it's better to ask the experts, so NTs.

No, NT's aren't experts on how autistic people can make friends.

Problem is, a lot of us either can't socialize the same way NT's do, or, for those of us who can, it's usually an elaborate and extremely arduous mask, extremely tiring and not enjoyable at all.

Hence we can't experience companionship (enjoying each other's company) the same way NT's do. So we have to find our own unique ways of experiencing companionship.

StrayCat81 wrote:
But the most important thing is to know what exactly do you want out of relations with humans? Depending on that, strategies might be different.

Yep.


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10 Aug 2021, 3:38 am

Mona Pereth wrote:
Nades wrote:
Yip. Immature, insecure and controlling. It's often the immature causing the most drama yet they seem to think they're capable of "controlling" the group. An immature aspie is not in the slightest equipped to control a group or be a dominant member if they have precious little practical life experience and lived a sheltered life.

Certainly, general "practical life experience" is helpful -- as is experience, more specifically, of leading a group of some kind. It's probably best to start off by leading something relatidcvvely low-stakes, like a hobby-oriented group, before moving on to lead/facilitate a support group or a career-oriented group.

Nades wrote:
For the sake of everyone's sanity in such groups, there needs to be a fairly thought out and objective pecking order due to how widely varied the capabilities of different aspies can be. You can't just shove anyone at the top of the pecking order. It's obvious an aspie who can drive a minibus, is successful with work or whatnot, doesn't need his/her parents when outside the house for support and doesn't go into perpetual meltdowns is far better suited and mature for being one of the group leaders than an aspie who needs constant support and will crumble when under the slightest bit of pressure.

Again I don't think car driving ability is all that terribly relevant, but I agree that a leader does need to be someone who won't "crumble when under the slightest bit of pressure."


Sorry lost my entire post. The group I went to was social and didn't offer employment support or anything similar. Mainly they met in the same place but also occasionally went bowling/elsewhere. Their parents often had to come with them to these events.

I think an aspie which is well rounded will make a better group leader irrespective of training. (Obviously it helps). Someone hanging off their mothers apron strings would struggle hugely be a good group leader regardless of how much training they have.

Picking a group leader needs to be done fairly and their dominance of the group needs to be kept to a minimum. They should just pop up and take control only when needed. A group event done away from their usual hanging spot is where a leader of some sort will be essential.



Last edited by Nades on 10 Aug 2021, 4:10 am, edited 1 time in total.

Dox47
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10 Aug 2021, 3:42 am

I co-founded and ran an in person support group in the Seattle area for about 5 years or so, by far the biggest problem, which eventually lead to my leaving the group and it largely ceasing to function, was the inability to segregate by functionality.

This is actually a really hard problem, my partners and I formed the group for high functioning adults as we'd discovered that virtually all the local groups were aimed at children and their parents, but we didn't really have the heart to turn down people who showed up who really weren't who we were looking for with the group. Over time, what happened is that the least functional, most difficult people were the ones who showed up every time (often early despite repeated warnings not to), stayed late, made absurd demands (we provided free food and beverages and people would demand dietary accommodations, then not eat the special food because it wasn't something they liked. etc), and otherwise suck all the energy and life out of the group, while essentially chasing off the high functioning people who had very little in common with them.

This is going to sound harsh, but the people we were aiming for were the people that were basically functional but socially awkward and needing some social support, not people incapable of working or living in society or socializing in a pleasant manner, and we really weren't equipped to deal with them and the extra demands they placed on our (again, free and completely volunteer) group. Once a certain critical mass was reached of lower functioning to higher functioning people, we really started jettisoning the higher functioning members as the group no longer had any appeal to them, while the lower functioning people wanted more and more meetings as they literally had nothing else going on, it was exhausting and eventually killed the group.

Eventually, my partner who had been hosting the events at a local space he had access to just had to throw in the towel, he was putting too much effort into the group for no reward and too often not even any thanks, and when other members of the group tried to find a new location for meetings, no one would contribute even a nominal amount to get a space, or raised objections to every space put forward. I think it limped along for a few more years and may even still be out there on Meetup, where it started, but it's no where near what it was in the heyday.

As an aside, if you've spent enough years on and/or observing WP, you may have noticed a similar pattern at play regarding who has stuck around and who has left, I call it the autistic death spiral, and it seems to be fairly inevitable for ASD groups of any kind.


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10 Aug 2021, 8:47 am

Dox47 wrote:
[...] if you've spent enough years on and/or observing WP, you may have noticed a similar pattern at play regarding who has stuck around and who has left, I call it the autistic death spiral, and it seems to be fairly inevitable for ASD groups of any kind.
Those of us HFAs who have stuck around seem to have high hopes for the future of WP, but also seem to limit their (our) participation to those threads where we can be effective AND receive support.

The rest of what you said could have been written about every support group or club I have managed or been a member of -- they start out with great expectations, with a focus on specific needs, only to be used as dumping-grounds for people with few or no social skills.  It is like starting a club for adults who play AD&D, only to have it taken over kids who only want to play Magic: the Gathering (been there, done that, wrote the novel).


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10 Aug 2021, 8:54 am

I'm really not the type who likes to sit around just discussing my problems.

If the emphasis is on discussing "real life" situations in a way which doesn't seem "therapeutic," somehow, I would be more for it than if we discuss theory.

There should also be rules, obviously, against one person using abusive and condescending language towards another person.



Last edited by kraftiekortie on 10 Aug 2021, 9:22 am, edited 1 time in total.

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10 Aug 2021, 9:09 am

Nades wrote:
Sorry lost my entire post. The group I went to was social and didn't offer employment support or anything similar.

So it was just a generic social group?

If so, that's a problem right there, in my opinion. It seems to me that generic social groups are not the best way for most autistic people to socialize. Given our difficulties with socializing, it seems to me that groups devoted to specific hobbies or activities that we enjoy are much better than generic social groups.

It seems to me that generic autistic social groups may have been a good idea back in the days when adult autism was a newly-talked-about thing and everyone was thrilled just to meet another known-to-be autistic adult for the first time in their life. But those days are long gone, except perhaps in isolated rural towns.

In a metro area with large-enough autistic community that a variety of hobby/activity-oriented groups can be formed, I think it would be a good idea to form lots of small hobby-oriented groups of autistic people, each devoted some specific hobby or activity. These groups could both meet by themselves (at least virtually) and make occasional excursions to larger, NT-dominated gatherings devoted to the same hobby/activity. A sufficiently large autistic hobby-oriented group (more than 4 or 5 regularly-attending members) would also be in a good position to ask the larger NT-dominated groups/gatherings for accommodations, if feasible.

Nades wrote:
Mainly they met in the same place but also occasionally went bowling/elsewhere. Their parents often had to come with them to these events.

An autistic bowling club, with "bowling" in its name and intended specifically for autistic people who are fond of bowling, would be a good idea IMO.

Nades wrote:
I think an aspie which is well rounded will make a better group leader irrespective of training. (Obviously it helps). Someone hanging off their mothers apron strings would struggle hugely be a good group leader regardless of how much training they have.

Usually, but not always. Autistic people are known for weird combinations of ability and disability.

Nades wrote:
Picking a group leader needs to be done fairly and their dominance of the group needs to be kept to a minimum. They should just pop up and take control only when needed.

Depends on the focus of the group. Some kinds of groups need more leadership than others. In all groups I think there should be at least one person with the specific role of welcoming newcomers and helping newcomers get oriented.

Nades wrote:
A group event done away from their usual hanging spot is where a leader of some sort will be essential.

Agreed.


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10 Aug 2021, 9:45 am

Mona Pereth wrote:
Nades wrote:
Sorry lost my entire post. The group I went to was social and didn't offer employment support or anything similar.

So it was just a generic social group?

If so, that's a problem right there, in my opinion. It seems to me that generic social groups are not the best way for most autistic people to socialize. Given our difficulties with socializing, it seems to me that groups devoted to specific hobbies or activities that we enjoy are much better than generic social groups.

It seems to me that generic autistic social groups may have been a good idea back in the days when adult autism was a newly-talked-about thing and everyone was thrilled just to meet another known-to-be autistic adult for the first time in their life. But those days are long gone, except perhaps in isolated rural towns.

In a metro area with large-enough autistic community that a variety of hobby/activity-oriented groups can be formed, I think it would be a good idea to form lots of small hobby-oriented groups of autistic people, each devoted some specific hobby or activity. These groups could both meet by themselves (at least virtually) and make occasional excursions to larger, NT-dominated gatherings devoted to the same hobby/activity. A sufficiently large autistic hobby-oriented group (more than 4 or 5 regularly-attending members) would also be in a good position to ask the larger NT-dominated groups/gatherings for accommodations, if feasible.

Nades wrote:
Mainly they met in the same place but also occasionally went bowling/elsewhere. Their parents often had to come with them to these events.

An autistic bowling club, with "bowling" in its name and intended specifically for autistic people who are fond of bowling, would be a good idea IMO.

Nades wrote:
I think an aspie which is well rounded will make a better group leader irrespective of training. (Obviously it helps). Someone hanging off their mothers apron strings would struggle hugely be a good group leader regardless of how much training they have.

Usually, but not always. Autistic people are known for weird combinations of ability and disability.

Nades wrote:
Picking a group leader needs to be done fairly and their dominance of the group needs to be kept to a minimum. They should just pop up and take control only when needed.

Depends on the focus of the group. Some kinds of groups need more leadership than others. In all groups I think there should be at least one person with the specific role of welcoming newcomers and helping newcomers get oriented.

Nades wrote:
A group event done away from their usual hanging spot is where a leader of some sort will be essential.

Agreed.


It was a generic social group yes. The problem I could see was that the group itself wasn't "independent". They couldn't just decide to pop into the nearest city for example without the parents getting in board too. This is where a HF aspie with a reasonable amount of courage and independence might come into play of in charge of a group. A group with their own minibus and a member that can drive it would be invaluable. Just meet in one spot, jump in and go anywhere. That would be a social group worth going to.


Bowling and other hobbies seem like a great idea but the population needs to be large enough to support it. Autism and a specific hobby like bowling cuts down the pool of people a lot.

Groups always need leadership but an aspie group always more so. While aspies do have weird combinations of abilities, broadly speaking the usual ones of driving, staying calmer under pressure and being confident on their own will be a good indicator that that person might be one to be one of the group leaders.



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10 Aug 2021, 10:23 am

Dox47 wrote:
I co-founded and ran an in person support group in the Seattle area for about 5 years or so, by far the biggest problem, which eventually lead to my leaving the group and it largely ceasing to function, was the inability to segregate by functionality.

This is actually a really hard problem, my partners and I formed the group for high functioning adults as we'd discovered that virtually all the local groups were aimed at children and their parents, but we didn't really have the heart to turn down people who showed up who really weren't who we were looking for with the group.

I think a division between work-capable autistic people and more severely-disabled autistic people is appropriate for some kinds of groups but not others.

One type of group I think the autistic community needs, and that would naturally and automatically be limited to people capable of paid work, is career-oriented groups devoted to specific general categories of professions/occupations/jobs. For example:

- a group of autistic engineers and computer professionals (e.g. Autistic Techies of the NYC Area)
- a group of autistic lawyers and other legal professionals
- a group of autistic people in health professions
- a group of neurodivergent special ed teachers
- a group of autistic people in skilled trades (electricians, plumbers, etc.)

etc.

These groups could occasionally co-sponsor joint events relevant to all or most autistic workers, e.g. a workshop on resume writing.

Anyhow, there are other kinds of groups, e.g. political advocacy groups, for which I think it's important to include as many different kinds of autistic people as possible.

I also think Wrong Planet is doing fine by being as inclusive as it is (more about this later).

I also think you may be scapegoating "lower functioning" people for issues that are common among autistic people generally, and that there are reasonable solutions (which you apparently hadn't thought of) for some of these issues. For example:

Dox47 wrote:
Over time, what happened is that the least functional, most difficult people were the ones who showed up every time (often early despite repeated warnings not to), stayed late, made absurd demands (we provided free food and beverages and people would demand dietary accommodations, then not eat the special food because it wasn't something they liked. etc),

Instead of providing free food, I would suggest pot-luck dinners. That way, people with special dietary requirements and/or weird food tastes can bring their own food. Special dietary requirements and weird food tastes are both very common in the autistic world, and should be expected IMO, even among the most "high-functioning" people.

As for people being generally "difficult": A lot of us, including some of the most "high-functioning," are "difficult" people. That's just a fact of autistic life. IMO the best way to deal with this is for our local main peer-led general support groups to have frequent topic-focused discussions devoted to what I call "autistic-friendly social skills," including autistic-friendly variants of assertiveness (without being aggressive), active listening, and conflict-resolution skills.

Dox47 wrote:
As an aside, if you've spent enough years on and/or observing WP, you may have noticed a similar pattern at play regarding who has stuck around and who has left, I call it the autistic death spiral, and it seems to be fairly inevitable for ASD groups of any kind.

It actually seems to me that WP is doing very well. Sometimes people complain that WP doesn't have as much traffic as it once did, but that's to be expected for any message board forum these days, given the rise of social media. And, personally, I have no problem with the presence of the more severely-disabled people here on WP.


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Last edited by Mona Pereth on 10 Aug 2021, 3:04 pm, edited 8 times in total.

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10 Aug 2021, 10:40 am

Nades wrote:
A group with their own minibus and a member that can drive it would be invaluable. Just meet in one spot, jump in and go anywhere. That would be a social group worth going to.

Agreed that a member who drives a minibus and is willing to use it for the benefit of the group is a valuable member and should be shown appreciation for doing that. But that doesn't necessarily mean this person is the best leader otherwise. For example, a mini-bus driver might not be good at welcoming/orienting newcomers, and/or they might not be good at making generally well-organized plans.

Nades wrote:
Bowling and other hobbies seem like a great idea but the population needs to be large enough to support it. Autism and a specific hobby like bowling cuts down the pool of people a lot.

Of course. What we need, IMO, is lots of specialized small groups, not one big group.


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10 Aug 2021, 11:58 am

Mona Pereth wrote:
Summer_Twilight wrote:
My other problem with some of the support groups today is that they are becoming too political.

I think it's best to have separate groups for the political stuff, for those who are interested, and to try to keep controversial autism-related topics out of a general support group (except to allow announcements of meetings of the autism politics group, along with other groups some of the support group's members might be interested in).

Summer_Twilight wrote:
While self-advocacy is important, I don't really care about that stuff.

I do think occasional "self-advocacy" topics, e.g., brainstorming the best way to ask for accommodations in one's workplace, may be relevant to the main support group.

Is that what you were referring to as "self-advocacy," or something else?

Summer_Twilight wrote:
I just want a support group where I can be around other people who I can relate to. I am also more interested in learning about the social skills, learning how to keep a job, etc.

Insofar as an autistic peer-led support group deals with social skills, I think it's probably best to focus on the specific subset of social skills that I call "autistic-friendly social skills" -- as distinct from blending in with NT's. (If someone wants to learn how to act more like an NT, that's probably better accomplished in an acting class.) It so happens that what I call the autistic-friendly social skills are also useful in many workplaces.

Summer_Twilight wrote:
The people in these "Self-advocacy groups" can also be very mean and demanding. They also seem to take everything that could help them and throw a big tantrum.

I don't understand that last sentence. Does it contain a meaning-changing typo? Perhaps missing a crucial word or two?

Summer_Twilight wrote:
On top of that, it's a sin if you want to be involved in the activities with Autism Speaks as way of raising acceptance. If you are part of that group, then you are the enemy of these self-advocacy groups. I don't like that.

Autism Speaks has gotten much better than it used to be, and this should be acknowledged IMO. Yet there are still some good reasons to be wary. But that's a topic better discussed in the Autism Politics, Activism, and Media Representation section than here.

Summer_Twilight wrote:
It also seems everyone is always out to get them.

For example?


1. People in these groups can be mean and demanding towards the world which should automatically move over for them. If they don't then there is hell to pay.

A. They get very mad over someone using "People first language" and demand that everyone do it their way

B. I met someone who was going to work on a project with a non disabled woman who has good intent. They got mad because the project wasn't run by people on the spectrum.

C. I put my foot down to the way they were acting and disagreed with them only to have them accuse me of shooting the messengers and being abusive

2. Regarding everyone out to get them, they take just about everything the wrong way

A. Say, learning social skills is abeleist and that it's really a way of teaching us that we need to fit into the perfected nt world.