XaiJu
I'm Autistic, Now What?
I'm Autistic, Now What?

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She's Autistic, but I CAN'T tell her? + Unmasking Advice.

She's Autistic, but I CAN'T tell her? + Unmasking Advice.

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It’s by a company called BlackMilk but it’s not there website anymore because I’ve checked 😞 best bet for finding one would probably be Vinted or eBay.

Becky

Where can I get the shirt

Angel Best

Also for context, I say this as someone late diagnosed with Dyspraxia and Autism - and I suspect I might have ADHD because there’s some things that don’t fit still. I didn’t get the dyspraxia diagnosis at age 10 because the doctor I saw didn’t believe it was real. This was clearly harmful to me. And awful. But that’s on that individual not the whole system. I wish I’d been able to access support earlier but also know that I didn’t have the knowledge to diagnose my SpLD accurately myself. I knew something was up but not what. And treating it like dyslexia wouldn’t have helped me and would have also harmed those who needed support for that, and possibly their access to the right kind of help. On the other hand, I was pretty sure re: autism before diagnosis. But, relatively speaking, I don’t need huge amounts of support so there’s still days even with the official diagnosis that I doubt it and if I’d solely self diagnosed I think my mental health would still be worse (periodically gaslighting myself into thinking I’m just wrong and need to get on with it). Considering possible ADHD, I guess I kind of am self diagnosed. But I wouldn’t claim I definitely have it, or seek medication/support from work without an official diagnosis. Fortunately, a lot of the challenges I suspect make for overlap with ASD ones so I can get support for those aspects. If that changes and it was affecting my life I’d seek confirmation from a doctor.

Alexandra Stacey

At the risk of putting it too simply, being wrong and not informed enough to know. If you’re not a medical professional with a specialty in autism you don’t necessarily have the skills to diagnose someone. Just like how I wouldn’t ever diagnose someone I met. I know me really well, yes, but it my job to give all that info to the qualified professional and work with them to get a correct diagnosis. I appreciate doctors are frequently less informed than we’d like and that misdiagnosis happens coming from them too. But if that’s true then it’s surely even more concerning when people with no experience in differential diagnosis start trying to untangle ASD, ADHD, and other SpLDs that can present very similarly without multiple being present. (Obviously you can have multiple). It’s potentially dangerous to the individual to be trying to live their lives in a context of an incorrect diagnosis. This is well known from people who are autistic and received multiple different incorrect mental health labels (like generalised anxiety and ocd) or even in an example like misdiagnosis of stomach cancer as a benign tumour or ulcer. You don’t want anyone to be wrong. It can be harmful to the individual who is self diagnosing if they are incorrect. Now that’s not to say there is no value in it. Lots of people have been burned by the medical profession or just don’t feel they need the piece of paper because they’re managing okay without support. But I would then frame it as ‘I suspect this, but I haven’t had an official diagnosis’. The reality is that we don’t give support and benefits to people who don’t have proof (that’s a whole other conversation) so if you need that help you’ll need the piece of paper anyway. Now why else does it matter if we have people incorrectly self diagnosing? Seems a bit like gate keeping? But Autism isn’t just a set of traits, or something to identify as, have temporarily, or can grow out of. It is actually something you are born with that has significant real world challenges. Ranging from needing reasonable adjustments to lifelong daily caring support. Now I appreciate lots of people don’t like the disability model. But also, do we really want to advocate ourselves OUT of support and help for people that do need it and do feel that their life is affected to the level it’s disabling? There’s a reason that we don’t let people diagnose themselves with other physiological disabilities like MS, cerebral palsy, dementia etc. the reality is that living with any disability is REALLY hard. There’s a danger of incorrectly self diagnosed NTs essentially advocating against support from NTs. Too many people functioning and claiming they don’t find it disabling would allow general society to ignore people with real support needs.

Alexandra Stacey

I've seen this take a lot and I just wanted to ask one thing because I don't quite understand, but what are the dangers of self-diagnosis?

amberrv

You do so much great stuff, love what you are doing -- maybe try to trust yourself more (I know, big ask)

Jennie

*screams in "I did really well in school because expectations were explicit but hate/struggle in 'real life' where they are not*

Jennie

Sorry still confused discord pantheon are linked but I don't see how to access the Chanel on discord.

Erik Johnson

I found this video helpful. Thank you.

Christopher Earl

No worries. I was afraid I had missed something!!

Tessa Coker

2 podcasts just dropped and a LOT more to come this month! It's me making things too long as usual that's causing issues 😂

I'm Autistic, Now What

I am not in favour of self-diagnosis as I think it is inaccurate at best, dangerous at worst. As you say, you also need a formal assessment in order to access some services.

Argy

Have you posted anything in April yet, Meg? It seems a while…

Tessa Coker

Also - ouch the first situation. I’m so in favour of diagnosis - not because it should define you or anything but because if you don’t have the piece of paper you can’t access support in society. Autism is hard either way but from my perspective trying to undo the pain and confusion later seems much harder. My life could’ve been really different if I’d had support before uni/adulthood. I’m sure there would’ve been challenges but maybe not the same degree. I think they dealt with it so well because you ultimately can’t decide when it’s not your child

Alexandra Stacey

I seriously love the Winnie the Pooh shirt ❤️ where did you get it??!

Alexandra Stacey

Hi Erik, sorry for the delay in getting back to you! Does this page help at all? https://support.patreon.com/hc/en-gb/articles/212052266-Getting-Discord-access

I'm Autistic, Now What

I agree that what the first person said was a great and complete-feeling response to address their own concerns in response to the perspective of the dad. And, I think this kind of content is perfectly fine and interesting, I'm sure I would like other types of content you would put out as well, but nothing is coming to my mind that feels missing or whatnot.

Jordan Curry

Sorry to ask here but I don't understand how to get on discord server. Can you help.

Erik Johnson

It makes complete sense! Thank you for sharing 💛

I'm Autistic, Now What

i been very busy recently and also a bit isolated since its spring break (and i just moved so i still dont rly have any like actual friends lol) and its a lot harder for me to socialize even online esp with discord bc my brain hates the layout and how the servers and dms and everything build up and all the little red notif things pressuring me and uhhhhhh yeah idfk lmao i also did online school and was completely isolated 24/7 (besides mainly my mom) for almost 2 yrs and went into what i now realize- or think ig cuz im technically not diagnosed yet but i mean im VEEEERY certain atp ive done like literally all the research i can do and still am each time i think of a new thing or just wanna double check lol💀- was a very very miserable and prolonged autistic burnout (prob throughout the whole time i was in online school tbh cuz i was already def starting to break before i started online bc that school was traumatizing asf and 100% by far the worst school ive ever gone to/heard of/seen and ive moved a ton like ive never stayed at any school longer than 2 years at most so thats def saying something) but yeah ig i rly didnt need to tell u all this cuz my point just was that i am horrible at independently socializing on my own esp without someone i know specifically needing/wanting me or coming w me or encouraging me or wtv but like i def wanna put myself out there more esp when it comes to talking to the amazing ppl on ur server i just need to give myself that boost and like motivation to actually at least someone consistently talk to ppl outside of my own family (and not just when i have to at school) ANYWAYS jesus christ can u tell i have audhd rn lmfaooo i needa shut up wtf am i on im so sorry for this random rant paragraph all i rly needed to say is oh shit thanks for the reminder imma go do that rn or smth or oh yeah i needa remember to chat there more!!, etc, etc lmfao i rly need an app on my keyboard or smth that just like locks it and tells me to shut up cuz i feel like once i start typing i just get sucked in and all my thoughts pour out ugh see this is why i like vc u should bring back vc😁🙏 i understand why not tho dw lol im jp anyways sorry i mean if ur even still reading first of all DAMN thank u lmfao thats sum commitment to ur fans but also DAMN IM REEEEAALLY SORRY😭😭💀 THANK U ALSO I FORGOT TO SAY THANK U EVEN AFTER ALL OF THAT WOW IM HORRIBLE ANYWAYS ILY AND TYSM FOR UR LOOOOOOAAADS OF LEGIT LIFE-CHANGING HELP/ADVICE/CONTENT/COMMUNITY srsly tho if it werent for u i wouldve fully succumbed to imposter syndrome and peoples doubts/stereotypes/outdated opinions and just believe that the huge piece of me i had finally discovered about myself and all the dots that connected as to why my life and certain things i have to do even in order to even have one felt so confusingly impossible compared to all my peers was just “idk, some severe type of adhd ig plus like bpd with it and ptsd” (i have ptsd and adhd plus like 10 more mental shiz but obvi it doesnt boil down to that and ik that now lol) OK SO IM DONE FUCKING TYPING IM TELLING MY FINGERS TO STOP I JUST WANTED TO ADD THAT LAST THING CUZ ILYSM AND APPRECIATE U SOOOO MUCH MORE THAN U KNOW AND U PROBABLY EVEN GIVE URSELF CREDIT FOR SO TYTYTYYYY ILYYY CYA ON THE SERVER IF/WHENEVER I REMEMBER LMAO <333 smfh oops😭💀

Aqua DeMoney

Really enjoyed getting your takes on these situations. I would love to see more of these!

Jonathon

On the subject of masking: I'm late diagnosed (45) and yesterday was the first time I went to a talking group for autistics. For the very first time in my life, someone said "you are not required to talk to be here" and I took it literally. To my surprise (I'm usually a very social person despite my anxiety and being autistic) I spent 2 hours not speeking at all, fully listening to everybody, discovering who they are without the pressure to do smalltalk. I only spoke when I left, to say thank you and tell them I would be coming back next time. Everybody acted like it was perfectly normal. Nobody seemed freaked out by the stranger just silently looking at them for 2 hours. The experience was so liberating that when i finally got outside I burst out crying. It hit me that until then, I had never really realised how much I mask, and how much I needed this. It did feel awkward to just sit there and not speak, but I did not care. Does that make any sense ?

hakugei_

"Wouldn't it be great if there was unmasking therapy we all get" is so right. I just had an epiphany today that as depathologization continues maybe we could use a diagnosis code for "deeply masked autistic identity disorder" so insurance (here in USA) might pay for it and we can give everyone a true disorder to anchor on.

Ken K

Aww, welcome back!! Did you manage to get back into the Discord? 💛

I'm Autistic, Now What

IM BACKKKK WOOHOOO I FINALLY HAVE MONEY AGAIN😭💀🫶

Aqua DeMoney

As a person who has come to realize that I am most likely autistic, at nearly 60, I have NO idea how I am masking. I have instinctively surrounded myself with caring people who can carry the conversation (having known for a long time that I am a conversational ball-dropper). I no longer need to be many places where I am forced to socialize in a group setting with people I don't know well. When I am in a large group, I usually have a job to do so I don't have to stand around feeling awkward. I do want to know if I am masking in a way that causes me unnecessary stress, however. I think Rj's comment above is right on the mark. Shifting to think about it as a "process of finding what works for you and abandoning what doesn't," will probably be very helpful.

susanmvb

I'm very lucky because I'm able to have therapy. In the latest session we were discussing this same topic - how to stop masking. It's easier said than done for somebody who has been masking more than three decades. I think the first step would be to recognise when you are doing it.

Racketty

Being autistic is a natural part of life. Being forced to act like we're not autistic is not a natural part of life. Being forced to deal with more difficulties because the world is engineered to exclude our needs while catering to neurotypical people is not a natural part of life. Not understanding why we feel different isn't inherently natural either. My parents figured out I was autistic and had ADHD when I was much younger and didn't tell me because they didn't want it to "hold me back". I will say fairly that NOT knowing doesn't seem to have "held me back" (in the context of late stage capitalism), but I spent far too long not understanding why or how I was different, and I spent way too long being confused by things that all clicked when I found out. An official diagnosis, depending on where you are, might lead to disadvantages because of social policies, but at least knowing, even if I "kept it to myself" could have given me a great deal of insight that could have been exceptionally helpful. But in the end, it's difficult to know what's to come either way. It's rough.

Ohh Crap Guy

I'm so glad you like it! I start panicking that it's excruciatingly boring 😆 That sounds like a good plan - I really enjoy the polls because I can never predict what people will choose!

I'm Autistic, Now What

Thank you so much! I hate styling hair 😩 These days I roughly dry it straight (otherwise it becomes super frizzy), sometimes I run a straightener through it after that, and then I curl it with a GHD curling wand (I think it's the creative curl one - I got mine on Vinted!) The hair tinsel is thanks to my hairdresser - I'd be awful at doing that myself! And I'm soo glad you've found my content helpful. That's lovely to hear 🥰

I'm Autistic, Now What

The questions seem to be very much in my wheelhouse, so i'm happy for them to continue & i can't really think of anything better currently. It might be nice to inject a little novelty every now & then. Dive into that big notebook of ideas you have & do a poll perhaps. That novelty might be good for you too, something exciting to research, or a new creative outlet, keeping that passion alive. But these questions help not only the people that ask them, but us & hopefully many future peeps as well. Which is a very big plus, that not a lot of other content ideas can achieve

fo4URm

I second this!

MagnaCorpus

This is entirely unrelated, I’m so sorry, but I just wanted to say that your hair is so pretty and I keep wondering how you style it 🥹💜 also thank you for all your content, it has been immensely helpful to me and a huge source of comfort as I navigate finding out that I’m probably autistic. I think I’d be at least three times as confused and intimidated if it weren’t for your videos.

Alina

Great video! I can definitely empathise with needing to hide in my car at ‘forced events’. I agree with your unmasking approach. I basically give myself permission to fidget, look away from people and even let the conversation die if it must. These days I embrace my weirdness!

Andy B

It was so fun! She's lovely 🥰

I'm Autistic, Now What

Meg! It was awesome to see you on Claire’s channel! Hope to see you guys do more content together.

shapeofsoup


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