Thick with the ‘tism – ASD Social Space

[Shaz51]

Hello @Bafflelaffle and welcome 

Hello @The-red-centaur , @Jynx , @Eden1919 , @tyme , @BipolarPenguin 

[The-red-centaur]

I joined a dnd campaign....it was a little intense tbh. But lots of fun. 

[Apricot]

Hi @Jynx @ thank you for creating this specific space for Autistics on the Sane website

It would be awesome if there was an Autistic/ADH group in the Sane Group Hub.

It would be awesome if there was an online monthly Sane group for Autistic/ADH with specific topic - an example autistic burnout and mental health, etc. 

I realise that is not your responsibility.

I did not know where to ask, suggest to Sane. Sometimes an email is just me - one person and can easily be dismissed, ignored.

Maybe suggesting here you and others have the option to reply.

I realise both suggestions will need Sane admin, volunteer support, etc.

It is vitally needed and has the potential to support people, improve quality of life, prolong lives (no one lives forever).

There are lots of posts by Autistics.

I am not quite articulating the needs and the importance, maybe someone else will. 

I did not put the D for ADHD as it is Disorder. 

Kind regards and Best wishes

[Ru-bee]

Hi @Apricot 

Welcome to the forums!

These are some awesome suggestions! 

If we were able to have a monthly Autistic/ADH group, what are some other topics that you'd like it to cover? And would you like it to include getting some experts in, or just purely peer-peer connection?

[Jynx]

Welcome @Apricot!! I love this idea as well, and think it could be a really great opportunity for some comradery and connection for our neurospicy members!! I'll tag the wonderful Captain of the SANE Ship, @RachSANECEO, cos I'm sure she'd be interested to read along too! We're very keen to continue growing the forums so your enthusiasm and sharing of ideas is highly encouraged 😊 Thanks friend!!

[RachSANECEO]

@Apricot thanks for the request = this is a can do.

What would we call the space? what partner orgs might we partner with to help promote it?

[Apricot]

Hi Ru-bee@  , yes please both, people with relevant living personal experiences Autistic/ADH and are neurodiverse affirming are the experts that can be invited for specific topics and; peer-peer connections with Autism/ADH; and moderated supported by Autistics/ADH.

There are some people who claim to be 'experts' that are really problematic and harmful.

There are Autistic/ADH that are professional psychologists, speech pathologists, occupational therapists, coaches, singers, actors, writers, researchers, scientists, athletes, every profession. There are lots of Autistic/ADH that are experts and neurodiverse affirming that could be asked.

Most topics Sane have done are relevant but need to include with Autism/ADH lens.

eg sleep is relevant for everyone but sometimes the standard strategies may not be enough, not work, have the opposite outcomes.

Alternative strategies, modified strategies should be discussed.

No strategy works all the time for everyone.

Need to acknowledge and validate each person's experiences and what does work for them, it might help someone else.

The get up out of bed when not sleeping, do something boring until next wave of sleep comes, does not work for me - I get nausea from the exhaustion, the next wave of sleep does not come and I am exhausted the next day. Staying in bed and resting works for me. I may get more sleep, I may not, I am resting. It goes against the 'expert' advice.

Couple of topics suggestions.

-Autism/ADH and trauma. 

-Autism/ADH and executive dsyfunctioning. Tips Strategies.

-Autism/ADH and sleep. Tips Strategies beyond the usual standard text book suggestions.

-Autism/ADH and self advocacy.

-Autism/ADH and psychology. Sometimes some strategies may not be appropriate.

-Autism/ADH and diagnosis.

-Autism/ADH and the mental health phone line.

-Autism/ADH and human connections/ friendships.

There are other topics, but I will send this.

Kind regards and Best wishes

Edit  @JollyRogers  @Snaffle-Admin 

[Apricot]

Hi @RachSANECEO 

Fantastic that Sane are able to do this for Autistic/ADH people.

Thank you.

The name is important. Words matter.

I would like it to be inclusive, that does not irritate some, does not add to stigma.

Maybe initially 'Autistics/ADH'.

I can only express my opinion. I do not speak, represent for others.

The name can change with Autistics/ADH community input.

The community is made up of individuals that do not agree on everything including identity language.

Some words some people like, others neutral, other people hate. For example neurospicy, neurodiverse, disorder, Autistic or have Autism.

Each person should be able to choose how they identify.

I would like the name, group to be for Autistics and ADH as there is a lot of overlap between these, and some people have both diagnosis. It is an outdated myth can only have one.

I think the partner organisations to 'promote', maybe more important to start small, work at meeting/exceeding the needs of Autistics/ADH people who will probably promote within their networks.

Sane will need ongoing input at every step including planning by Autistics/ADH to be able to achieve and not harm.

Initially Autistic/ADH organisations ethically would not promote 'sight unseen' as they have duty of care.

Something that would help me is being able to have key information of the topic to be discussed Before the session. Sane have fact sheets. Maybe something like that. I can print, read, underline. I can be aware where the session may go. Is it standard strategies that I already know and have tried, or nuances that sincerely have Autistic/ADH lens.  Some suggested questions for that specific session, knowing it can change. I can think, reflect before the session, and reduce 'kangaroo in the headlights'.

Having information before the session helps with processing, can reduce anxiety, can improve regulation, can increase participation, etc.

I find the session fast with having to read, type on my phone. I find the thread can be confusing as people's responses appear by time and not what responding to.

I sometimes feel the session is like school, students answering questions.

Having information Before the session from that session 'experts' for those that would like the information, will aid discussion, peer learning, etc.

Having the information Before the session is for those that would like it, it is not compulsory, necessary to read it at any time (before, during, after).

The information would be useful for people who are unable to attend the session.

It would be helpful to be able to submit questions before the session that could be shared before the session to the experts, so the information could be incorporated into the session. 

Maybe after the session, when the transcript is on the website. People could ask follow up questions, that are answered by moderators, trained peer support, 'experts' that appears after the transcript.

Maybe a question would be more relevant in another place on the website, and can be moved.

I realise staff time, etc cost money, energy, capacity. 

Mental health is every day.

Every one needs mental health support that helps them.

One size does not fit all.

Thank you for accepting feedback and making changes to support Autistic/ADH people.

@Jynx  @Ru-bee 

Thank you

Kind regards and Best wishes

Edit. @JollyRogers @Snaffle-Admin 

[Apricot]

Hi @RachSANECEO Feedback about forum. I find the software display of one long thread on my phone, not easy to follow the conversation. My replies and others to specific people appear later in thread and not branch from their comment. I and others would need to scroll back to read the comment. Need to put profile name even though hit reply - so others aware which person replying to but does not display which comment replying to. Sometimes can be glitch with linking name. Sometimes can feel intruding, distracting when replying on conversation in group thread, especially when displays as one long thread.

Takes a lot more concentration, focus to follow conversations in one long thread, deterrent, barrier, not accessible, when already struggling with concentration for various human reasons and worse when struggling with mental health, but the main purpose of the Sane forums is to support people with mental health including when struggling.

Also can not seem to see in the thread which profiles have liked comment. 

Different software can do both these things, for example Facebook. I am not saying have the forums on Facebook. Just giving example of how software visual display can help or hinder/prevent communication; and that there is software that can do it. 

It may view differently on computer, laptop than phone, but I do not have access to computer, laptop at home. Not everyone has computer, laptop, internet at home. I can access computer at public library but not open 24 hours day, and may not want to share vulnerable state on forum with someone literally 30 centimetres next to me on the next computer looking over my shoulder at my screen.

I realise software upgrades, different software costs money, but the current software is not accessible and excludes people.

I am requesting please Sane review the current forums software and limitations and consider upgrades to improve customer accessibility and experience.

@Jynx  @Ru-bee 

Thank you

Kind regards and Best wishes

Edit @JollyRogers @Snaffle-Admin 

[Ru-bee]

This is awesome feedback @Apricot 

It's really comprehensive and clear. Thank you for taking the time to share these ideas and examples of ways we can make the forums more accessible.

I can hear how motivated and passionate you are about this, and it's contagious! I'm really excited to see how we can work with this feedback as we move forward. 🌠