share ideas to combat bad press trope - 'dangerous solitary autistic' ?

I'm not sure I'm doing the right think by 'responding' to my own question but I want to respond to several responses!

TheCatWoman said:

Maybe we should get together and have a Media Group

OVERVIEW - would appreciate the view of a moderator as I'm new here

NAS promote autism as a general disability/ability trope.  This isn't about publicising autistics as individuals but as an anonymous group [ah, but  THE 'anonymous' hacker group . My idea is for NAS community members to have a separate layer, which is for offering written ideas as a group, toward resolving local/national issues which you read about in the news or on TV.

I've thought of the name, ABBC - 'autistics building better communities' [or, 'amazing block busting chat', in the vernacular - because it is about offering ideas toward resolving issues that keep repeating, to the alarm or distress of the community - everyone, not just autistics !). 

Looking at the many threads here reminds me of a huge number of cogs, whirring away, resolving individual problems. But if you look at the subjects, they very much overlap, viz: medical, anxieties, perceptions, social issues, ASB etc. These reflect general issues that affect NT's too, What if there was another layer within this community site but separate, where cogs [ideas] could be collated, refined then looped together to make a viable output aimed at the general good outside NAS to the wider community. I envisage discussion, such as on chat, but each thread [am I using the right word?] a specific issue. At some point, a conclusion is agreed then collated into an ideas sheet, pamphlet or informal report, published under ABBC under the umbrella of NAS, either as pdfs on a part of the site open to the public, or published on CreateSpace with ABBC as the publisher and royalties going to NAS to further their work. It is a contribution to the wider community, using the huge range of skills and expertise of people with autism. In this way, it promotes autism in a practical and positive way.

Hairyloon said:

Good idea, but I have no idea how to take it forward

Nor me! It's just my box of fireworks brain giving out an idea to bring ideas together in a form that helps resolve problems that keep repeating, on a microcosm or macrocosm. 

Iain said:

Would you care to start since I'm sure you have at least one project in mind.

Sure! They range from local to national issues, issues in social housing and those occurring in most places

1. keeping warm in winter for those of slender means
2. dog issues - noise, mess, attack
3. anti social behaviours in social housing
4. knife crime - not resolved despite legislation or charities or huge input from individuals like Baroness Lawrence
5. perception that everyone must be successful

I haven't answers for the below and would appreciate input:

Iain said:

What is the principle we are studying

2 - what is the intended outcome

3 - who is the target audience

4 - how do we establish our credibility

5 - what standards do we follow to enable peer review

6 - how do we define success of the project.

The credibility would depend on how the output is presented. I offer my authoring skills but there will be many others with writing skills. Perhaps each topic's inputters could decide on who best to lead. Not me - I'm 72 and my memory is taxed every day! The target audience depends on the problem being looked into. Standards and peer review - yes, the output must look as if effort has been put in. but it is being presented as the point of view of 'ordinary' autistics [now there's a conundrum ].

Hairyloon said:

I think that anyone can put up a thread...

I'm using the wrong word. I meant, it would need a moderator to set up a new area for this informal think tank, to keep it separate from general chat. It might not work, but wouldn't it be a marvellous collective brain machine . Somewhere ideas can be played with and turned into gold.

Marianne72 said:

The credibility would depend on how the output is presented

I would say the credibility of the contributors and methodology used is as important since so many studies are dismissed if one of the controbutors has a questionable history or if we don't allow the processing technique to be peer-reviewable.

These questions as to the impartiality and verifiability of the output will be as important to external parties if we want to be taken seriously - in my experience.

Marianne72 said:

I envisage discussion, such as on chat, but each thread [am I using the right word?] a specific issue.

I would think that to keep it separate there would need to be a separate website but using the same base discussion board engine. Volunteer moderators could keep the discussions organised although I suspect there would need to be a different "board" for each major subject being studied and discussion threads on different facets of it within each board.

So to draw a parrallel to here, there would be a board like "parents and carers" with lots of threads of discussion inside it.

As the research progressed we would need a quorum of contributers to agree each stage of the development of the idea and at the end NAS senior mods would probably also need to be involved for approval as we are doing it under their oversight.

There may be a licensing cost for the discussion board software, the website etc and possibly for the mods time to oversee it, but I suspect we could use a GoFundMe type solution for this.

It is all quite do-able so if we can think of a few pilot studies then we could be taken seriously.

Looking through the list of ideas:

1. keeping warm in winter for those of slender means
2. dog issues - noise, mess, attack
3. anti social behaviours in social housing
4. knife crime - not resolved despite legislation or charities or huge input from individuals like Baroness Lawrence
5. perception that everyone must be successful

These are not really foucssed on autism or neurodiversity so for them to be suitable here we need to focus much more on how they are specifically relevant to us.

An alternative list of ideas could be:

1 - how to help the recently diagnosed as so many feel lost, angry, like imposters etc

2 - How to stand up for yourself when dealing with complaints, abuse etc when your autism makes you want to hide.

3 - How to advocate for yourself in healthcare situations (dentist, doctor, hospital or mental health)

4 - how to eat well when you have issues such as only liking beige food, can only eat limited meals etc - all related to choice issues rather than medical issues.

5 - understanding what benefits are available for neurodivergents and how to be successful in the application process.

Just a few specific ideas from the top of my head. Keeping the focus on the ND aspect seem key at least for me.

Iain said:

These are not really foucssed on autism or neurodiversity

Precisely - my idea is not about things focussed in any way on autism, but issues that affect the general community. It would in essence be an act of generosity by the autistic community, the findings (as it were) freely offered publicly to the wider community (or, on issues like knife crime, offered to someone in Government would could make a difference, to help toward the building of better communities.

TheCatWoman said:

Why do you think that having a group of us giving repsnses to the press would be a bad idea

TheCatWoman said:

Maybe we should get together and have a Media Group

Absolutely not!  That would be far too egotistical and create annoyance among those not involved. NAS are the public front for autistic people. This is about group effort and equality - presented as one mind. 

My idea is that ABBC's products are a form of gift from the autistic community (not individuals) - to the whole community i.e. everyone, including NTs . Well thought out findings or ideas in writing are a very valuable thing. I envisage everything given out on a public part of the website as pdf's or leaflet's or booklets (as suitable for the subject matter). No TV or radio, no newspaper interviews - no individual authors; at the most, a list of contributors using pseudonyms if people wanted that. 

I don't think in black and white

Iain said:

Our black and white rule following is not reflected in society in general

I'm up in court on that at some point in the future...

I think you have mistaken what I mean. I apologised a few mins ago for responding to your original idea about media, which I retract. . I'm an author so my original thinking was to keep it to words not speech. And, as I said, I'm involved in a copyright claim which is getting to me. Again, so sorry and DO RETURN!!

Possibly, but aren't pedants the ones who write books! I think your average, struggling person would take useful ideas from anywhere. I would!

I'm sorry you feel like that, I was thinking more of something where some of us who are wordy could draft a press release representing the views of all those who contribute. In no way did I envision this as an elete group, but one where other could feed ideas into.

But i'll shut up now and won't come back to this thread.

Hairyloon said:

The main reason we will struggle to be taken seriously is that we will be right and society doesn't like a smartarse.

I'm not sure society cares about right and wrong in the same way many autists do. Our black and white rule following is not reflected in society in general and we will most likely be seen as odd pedants and ignored for that reason.

That is my opinion of course.

Iain said:

I see. I do think this will really struggle to be taken seriously

The main reason we will struggle to be taken seriously is that we will be right and society doesn't like a smartarse.

Marianne72 said:

Precisely - my idea is not about things focussed in any way on autism, but issues that affect the general community.

I see. I do think this will really struggle to be taken seriously for the following reasons:

1 - Society has a fairly poor view of neurodivergents at the best of times and many still consider us to have mental health issues (indeed many of us do have) so they are unlikely to take advice from people who don't think the way they do.

2 - Our lived experiences tend to be very different from NTs so we are unlikely to have the same experience and ways of thinking that they have. With so many of us being distanced from society in general I fear out views and opinions are unlikely to as well rounded as they probably should be for the subjects you refer to.

3 - How does it benefit NDs? With so many struggles being experienced by our community I think our priority should be our own. While any benefit for the wider community is attractive in promoting our worth there is a definite question of what is the greater need.

4 - Do we risk being pidgeonholed as intellectual elitists telling everyone how to run their lives? The savant meme can be quite damaging as so many of us are not like that and if people come to expect this and we cannot deliver then it won't end well.

Overall I think the idea has a lot of merit and potential if we can keep it focussed on our own communities needs first. The wider public have a much larger pool of specialists in academia and research groups to cover the issues you talk about while we do not.

Marianne72 said:

Precisely - my idea is not about things focussed in any way on autism, but issues that affect the general community.

I see. I do think this will really struggle to be taken seriously for the following reasons:

1 - Society has a fairly poor view of neurodivergents at the best of times and many still consider us to have mental health issues (indeed many of us do have) so they are unlikely to take advice from people who don't think the way they do.

2 - Our lived experiences tend to be very different from NTs so we are unlikely to have the same experience and ways of thinking that they have. With so many of us being distanced from society in general I fear out views and opinions are unlikely to as well rounded as they probably should be for the subjects you refer to.

3 - How does it benefit NDs? With so many struggles being experienced by our community I think our priority should be our own. While any benefit for the wider community is attractive in promoting our worth there is a definite question of what is the greater need.

4 - Do we risk being pidgeonholed as intellectual elitists telling everyone how to run their lives? The savant meme can be quite damaging as so many of us are not like that and if people come to expect this and we cannot deliver then it won't end well.

Overall I think the idea has a lot of merit and potential if we can keep it focussed on our own communities needs first. The wider public have a much larger pool of specialists in academia and research groups to cover the issues you talk about while we do not.

I don't think in black and white

Iain said:

Our black and white rule following is not reflected in society in general

I'm up in court on that at some point in the future...

Possibly, but aren't pedants the ones who write books! I think your average, struggling person would take useful ideas from anywhere. I would!

Hairyloon said:

The main reason we will struggle to be taken seriously is that we will be right and society doesn't like a smartarse.

I'm not sure society cares about right and wrong in the same way many autists do. Our black and white rule following is not reflected in society in general and we will most likely be seen as odd pedants and ignored for that reason.

That is my opinion of course.

Iain said:

I see. I do think this will really struggle to be taken seriously

The main reason we will struggle to be taken seriously is that we will be right and society doesn't like a smartarse.