Lived Experience Forum

[Jynx]

Howdy forums fam, it’s your pal Jynx here to start up a new social space specific to folks with Autism Spectrum Disorder. ASD is often marked by unique styles of communication, unique life challenges, and unique perspectives on the world, so I figured it would be awesome to have a space for us to come together to share/chat/support each other!

This space is open to all who identify as autistic, including those who suspect they might be autistic but haven’t gotten a diagnosis, or want to explore the experiences and insights from other autistic folk to understand lived experience of ASD a bit better.

Allistic (non-austistic) members are also welcome, but please do remember to centre the voices of our autistic members and respect their lived experience. We’re not here to debate autism, we’re here to connect in a safe space.

To kick off the conversation I’d like to ask about everyone’s special interests! Mine is D&D – feel free to ask me about it and I’ll talk your ear off!

Please tag anyone you feel would be interested in joining this space!

💜😊👾

[Eden1919]

Hi @Jynx  my psychologist thinks I have ASD but I don’t have an official diagnosis from a psychiatrist well actually it is confusing because I might have been diagnosed when I was little but I am not sure anyway I probably have it. I have never played d&d before so I know nothing about it. My special interest is Asian languages. 

[Millieme]

I also don't have a piece of paper with a diagnosis but several psychologists have now said they feel I am on the spectrum - im not really sure how I feel about it but see more of it in myself than not. Cost wise it doesn't seem worth getting the diagnosis because there will be no further support or understanding from anywhere.

My 'special interest' is probably my work and always trying to 'know' more and understand more about my field of specialty. 

[Jynx]

@Eden1919 Can be super confusing if you haven't got that clarity! But if it makes sense for your experiences then it can help you make sense of how you interact with the world hey. Would you seek an official diagnosis from a psychiatrist? Can be pretty expensive tho hey.

Asian languages are pretty cool! Blows my mind how different they are to Latin-based languages. 

@Millieme hard to know how to feel about it sometimes. I think it can be helpful in getting better understanding of ourselves and how we move through the world, but can also be really tricky when there's still such a lack of understanding and so much stigma. 

I'm also similar in going on deep dives for my work. I've done so much reading about ASD, ADHD, and trauma, it's bonkers haha. It's awesome that you have gotten work in your special interest, they often inpire so much passion!

[Millieme]

Thanks @Jynx @Eden1919 

Yes i think it is good to have the interest there for work related topics as it helps with the motivation! I'm not sure outside of that that there is any benefits - there's a lot work being done to reduce the stigma around Autism but I worry sometimes that they go too far with the 'positive' narrative that it's some kind of wonderful.. different way of thinking difference etc.. (which for some maybe it is!) but mostly for me I experience extreme loneliness and non-acceptance. 

[Eden1919]

@Jynx  it would definitely explain a number of things in my life but yeah it is hard idk if I will seek an official diagnosis or not it is something that has been playing on my mind lately though I think the problem is I have other diagnoses that complicate things quite a bit but yeah I am hoping that one day I will get some clarity as too if I have it or not. 

@Millieme  I get what you mean some people like to celebrate it but that isn’t everyone’s experience for some it has caused a lot of difficulties in life. 

[Jynx]

@Eden1919 @Millieme I think it can be a bit of both. We can celebrate being unique, passionate, and empathic individuals, whilst also acknowledging the incredible difficulties we face due to the nature of our current social context. Like the social model of disability - I am not lacking in my ability, I am disabled by society's inability to properly support me. 

[TideisTurning]

I love that this space now exists. Thank you @Jynx 😊❤️. I just wanted to stop by, say hi and also share this video from Autistic researcher Dr. Jac to add on to what Jynx was saying about the social model of disability in case it might be helpful and/or resonate for anyone here 😊 I feel like allowing for nuance is vital too- it's not all good, nor is it all bad. It can be both!  

[_PixieSolstice_]

Oooh! I just found this and yay, I’m not alone! I found my people!

I still can’t decide what my special interest/s are, at the moment. I think I’ve lost any focus on interests etc at the moment (gotta love mental illness hey) but I’ve gone from Pokémon, to Harry Potter, to cats, to theatre shows, to hmm probably Pokémon again, haha

[_PixieSolstice_]

I also tried a face to face adults with autism group meetup a couple of months ago, and it was just way too overstimulating- too many people, too many noises, too many smells and I did not have a great time (but I was in company of people who totally got it) so yay online!!