How DO You Unmask Autism in Middle Age..?! (Diagnosed at 49)
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- čas přidán 26. 08. 2024
- Join me for a chat where I discuss the prospect of unmasking while in middle age. Is masking just too ingrained in us after decades of doing so? I'd love to hear your thoughts and experiences too!
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If you're interested in my clay art work, my channel is at / claydisarray
#actuallyautistic #autismacceptance
All of my books that helped me understand myself:
Uniquely Human - Barry M.Prizant - one of the best in my opinion
The autistic survival guide to therapy - Steph Jones
The autistic experience - Joe James and Marie-Laure Del Vecchio
Girl Unmasked - Emily Katy
PDA by PDAers compiled by Sally Cat - only book about PDA autism i know and a great one
Explaining Humans - Dr.Camilla Pang - how neurotypicals work described using science and comparison to it
But everyone feels this way - Paige Layle
How to ADHD - Jessica McCabe
Workplace Neurodiversity Rising - Lyric Rivera
How to be autistic - Charlotte Amelia Poe
But you dont look autistic at all - bianca toeps
Autism feels - Orion Kelly
Autism in Heels - Jennifer Cook O´Toole - a woman side of view about autism
Unmasked - Ellie Middleton
I overcame my autism - Sarah Kurchak
Pretending to be Normal - Liane Holliday Willey
Navigating Autism - Temple Grandin
Unmasking Autism - Dr Devon Price
Different not Less - Chloe Hayden
Neurotribes - Steve Silberman
The reason I jump - Naoki Higashida
Asperger´s Children - Edith Sheffer
The Autistic Brain - Temple Grandin
How Emotions are Made - Lisa Feldman Barrett - how brain and emotion work in neurotypicals, so you can easily see the difference
Fall down 7 times Get up 8 - Naoki Higashida
In a different key - John Donvan+Caren Zucker
Loud Hands - ASAN
Emergence Labeled autistic - Temple Grandin
Send in the idiots - Kamran Nazeer
Far from the tree - Andrew Solomon has its Autism chapter
Power of Neurodiversity - Thomas Armstrong
Thinking in Pictures - Temple Grandin
Nobody´s normal - Roy Richard Grinker
Aspergers syndrome - Tony Attwood
Divergent Mind - Jenara Nerenberg
The way I see it - Temple Grandin
Oh, wow! This is such a great list, thank you! Pinning so everyone can see it 🧡
I can see what one of your hobbies is! Great list. cant wait to chip away at it.
Thank you! I’m copying this post to keep as a reading list. I worship Temple Grandin.
@@annelogston Now i am reading Laura James - Odd girl out , it is also a good book to read
Thanks for taking the time! So helpful.
I don't feel like i've 'lied' to people by masking because I was masking even to myself. I was doing what I thought all humans were doing but something was really wrong with me. Trying to be bubbly or confident is just what you do to be accepted or keep your job/livelihood/survival.
I did try to tell a few family members and they think I'm crazy. I don't blame them because autism is viewed as something different than what they see in me. They do not understand ASD, nor did I four years ago. I always thought to myself, most of my life 'maybe I'm autistic' but then say 'oh no I am overly empathetic to an overwhelming degree so there's no way I have ASD'
So now that years have gone by and lots of processing and finding my true self, not my past self but the me that grew up not knowing why I didn't fit in and not understanding why life was so hard.. I take that 'me' and gave her lots of love and freedom to be whoever she wants to be. I don't care to tell people, I don't need the label. I just need to understand myself and my limits and my gifts. That is all that matters. I'm not deceiving someone by not telling them because I am no masking.
I think all humans mask to some degree at certain times when necessary.. i don't think that is just an ASD thing. But I no longer mask to myself and I now understand who I am so much more. If I 'mask' I am completely aware of it, and it doesn't last long nor does it wear me out because I don't mask to that degree, ever.
You find yourself when you are being who you want to be, doing the things you love to do. In fact, being in my 50s makes it all the more easier because I no longer care what people think about me or how they perceive me. I care about them and am respectful as much as possible without taking away from my mental/emotional/physical health.
Do we have a tendency to over write? haha sorry. oops!
Ah, so many great points here! I used to think similarly around ASD. I'd describe myself as a highly sensitive person without ever realising I'm super-sensitive *because* I'm autistic. I'm really glad there's so much more information now, but we've still a long way to go - and yep, things become easier in middle age in terms of caring much less about others' views or expectations of you. It used to cause me SO much anxiety. 🧡
@@CreativeAutistic connecting with others (ASD/Older women) is so helpful and encouraging. Your channel is a great benefit to us all. 🖖🏼🌻🌷😊 Truly.
Aww, thank you so much. I'm glad you're finding it useful 🧡
When I was dx'd 5 years ago, at 53, I realised I had no idea who I was, having masked so heavily, for so long. I was so burned out that it was a matter of survival to unmask. Such a relief to put most of that load down. If you decide to go ahead, you may find out some unexpected truths about people you have trusted. (As bunch, neurotypicals are not nearly as empathetic as they like to paint themselves.) Be prepared for 'no you're not' from people with no expertise. And, whether you unmask or not, be prepared to grieve your lost self.
I haven't had any "no you're not", but I've had several "so am I" and s couple of "so am I, we're all on the spectrum somewhere, aren't we?"
(Only dx'd last month)
Some great points here. It's really easy to get lost in who you actually are when you've been masking for decades. Everything feels so ingrained in many ways. 🧡
@daffodil8127 Ugh, I can imagine! Congrats on your diagnosis 🧡
I never hear no you're not, bit a lot of 'you seem so normal '
I mask way better than I realize. When I got diagnosed I was convinced people knew.
I will not be seeking a formal diagnosis. When I've brought it up, from those in the know (for example other autistic people or people with autistic children) I've gotten: "yeah, ya think?". From (possibly autistic) older family members it's a "what do you mean?" or "I mean, everybody is a little autistic" (no dad, you are, not everybody...)
I'll be 42 next month. I started accidentally unmasking at home with my immediately family last spring, after getting diagnosed with ADHD and starting medication. I suddenly had the clarity of mind to understand my own preferences and needs, and it was really difficult at first to realize how much I needed to say no to things and deal with how that affected my relationships.
Mostly, everyone in my family has gotten comfortable with the less compliant version of me. Idk how it will go with the wider social circle.
I love your videos, I'm really glad you started this channel!
Thank you so much! I love the description of the 'less compliant' version of yourself - this makes so much sense to me. 🧡
(disclaimer: self dx'd ASD a few months ago after 18 months of research and introspection)
I've been on Disability for 20 years for bipolar II (a dx I don't dispute).
Your comment makes SO MUCH sense to me except where your initial clarity came from your meds, mine is 20 years of therapy attempting to strip back the layers of stress to recover my ability to function and to return to something resembling "normal life."
Except as I "gave up" on each layer of "who I was" (ie, "things I used to be able to mask through") I was only able to "return" by returning to masking... but because I was in therapy, I was able to identify that that was Not Good (even if I *desperately* wanted that piece of my life back) and that if I tried to brute force my way through it anyway (ie, mask), everything started to fall apart again.
20 years of that.
Until finally realizing I'm autistic.
... the "benefit" of 20yrs of that is that I think I now find myself to be a newly-diagnosed 50yr old autistic person who... largely understands which bits are mask and which bits are me.
The pieces I didn't uncover in therapy are largely sensory issues, I think (ie, repressing the stress signals my body sends me when I ignore sensory issues, which also includes repressing easily-identifiable stimming).
If you haven’t been “honest” with people, you did it because it was a survival mechanism. Masking is damaging to us and yes, some people don’t want to see us as we truly are. But we should not spend our lives pretending to be someone else just to make others comfortable. I was diagnosed six years ago in my 60s. Unmasking is possible. There are lots of good books out there now that can help. You deserve to be yourself!
This is great to know - thanks for sharing 🧡
I am 32 and only found out last september that i was on the spectrum. I was getting my son tested and found out so much lined up with issues i was facing that meds never helped. I can't go for a formal diagnosis due to the way it can be thrown back at me, so i remine self diagnosed, but it has changed my life. Unmasking is one of the harder things tho because for so long i had to figure out how to keep myself out of trouble, or from being teased, or messing up in conversations. I've only let myself unmask slightly with a select group and i still worry i'm pushing things. love your channel !
It seems to be a really common scenario where adults are realising they're on the spectrum through their children's diagnosis. Congrats on finding your truth! I hope it helps you to reframe things going forward (and thank you!) 🧡
When I took my eldest for their pre-assessment, the assessor joked we should have got a family ticket to see her!
@@daffodil8127 i could go to the same lady as my son but when i found out what trash could be slung at me in regards to like custody or parental matters, i am super scared to get it done till they are grown.
What initiated me looking at autism is that I'd occasionally run across tweets from ADHD people that reached thru the screen to GRAB me in terms of something that made me understand something about my adult ADHD daughter.
And some of the tweets/replies to the tweet would say something that made ME go "wait, that's an ADHD thing?" about myself.
And of course there are often ASD folks in the replies there, so as I started adding ADHD'ers to my follow list, I began running across more and more info about what the lives of unidentified autistic people can look like.
And I saw intense similarities for my daughter (who had in the meantime begun to suspect she was autistic) AND myself. Way closer "complete" explanation for her & me than ADHD.
I was diagnosed in March this year, the day before I turned 59, and I still feel so confused and stunned and somewhat at a loss as to what to do with the information. I have tried to discuss this with my siblings, my aging mother, and my children to varying degrees of surprise and reservation as well as denial ( you don't look autistic, I don't believe that for one second!) My spouse has been very supportive, and listens when I need to talk about what I'm learning now...But I feel sort of odd somehow. Like, how and when do I unmask, and what will that look like anyway? I have no idea who I was before being squished to fit the societal picture of "normal," which I failed spectacularly at, of course. I'm hoping that with time and research and learning, it will all work itself out. Eventually. Hopefully. Or maybe even with this diagnosis, I'll still never fit and never really find comfort and belonging, other than at home where I feel safe.
I relate to a whole lot of this in terms of how to unmask. I'm just so thankful I have a partner who understands 🧡
you fit in with autists. we are probably 20% of the population on earth. thats 1.8 billion people who get you?
Not easy is it. Masking is not totally negative IMO. It keeps us safe. Removing the mask in one go is going to be a bad idea in most cases. Take your time, test the waters and slowly find what is right for you.
I was never totally masked so for me it's not as hard as for some others. I never had the feeling that I wanted to 100% fit in and would regularly say to myself and others that people have to take me as I am. I was always partially masked but to those that knew me, less so.
I think this is harder for some than others, women especially generally. There is more societal pressure on you from a young age to conform and to mask completely. There are only certain ways I have to mask. I have to suppress showing my feelings mainly, something I find hard.
Keep up the good work, enjoying your channel!
Thank you! And thank you for sharing 🧡
Here I am at age 70, and it’s been about 12 years since my ‘diagnosis’ of Asperger’s Syndrome. At that time, I was still very busy working as an (underpaid and overworked) architect, and was eventually discarded at the beginning of the pandemic. It’s only since my retirement that I discovered late-diagnosed autistics on CZcams, and could start to identify that way. I only talk about my autism with a few people, and not my wife, who has some very wrong or outdated ideas about autism, even though she works as a teaching assistant with an autistic boy.
I'm sorry to hear that as it sounds really tough. I know I'm *really* fortunate in having a supportive partner and it's certainly not like that for everyone. I'm glad you're finding your community on CZcams 🧡
My truly amazing therapist suggested my testing two years ago, when I was 60 years old. I turned out solidly on the spectrum, with moderate sensory processing disorder and mild to moderate proprieceptive insensitivity. I’d strongly suspected the ASD and SPD. I guess I was a bit surprised that I was “worse” than I’d expected. I still have no idea how to unmask around anyone else, including my husband. There is literally no one in the state of Indiana (like an occupational therapist) who works with Level I or “high functioning” (ASD with no intellectual deficit) adult autism, so most of my best hacks, tips, and self-awareness epiphanies have come from channels such as yours. Thank you SO much for putting yourself out there and sharing.
Thank you for your kind words and congrats on your diagnosis 🧡
This is just a standard note, but since it's here, it applies xxx
I regularly 'wash' my account, so if it looks like I was interested in your content and expressed a load of support, then everything just vanished.......... I promise to try to do better with this, but as things are every few days/weeks everything just _has to go_ - I very much doubt you had anything to do with the reason for that, but even if you did, I'm on your side and think you're absolutely great.
So just letting you know everything (good) I said stands. I think you're great.
(Just a standard note, sending same to all relevant parties lol got no intention at all of being here to make people feel worse lol)
Another wonderful video! I’ve been struggling to unmask at all around close family… After so many years of carefully guarding myself, it’s much harder than I initially thought it would be. I’ve been stimming more at home, which has been a good step forward.
Thank you for sharing. It can be such a tricky process 🧡
Re: unmasking to family/friends IRL, that would make a great premise for claymation (or clay puppetry) clips i.e. creatively reenact those conversations, like a neurodivergent Wallace and Gromit. (Also therapeutically helpful in terms of processing after the fact.) Personally I cut myself off from everyone and everything that hasn't been historically supportive because, going forward, what's most important to me is living the most comfortable unmasked life I can - after a lifetime of masking without even knowing it, there's no room (or time) left for compromise.
Ha! I wish I was good at animation. I'd like to start experimenting with illustration though on this channel as I'm completely out of practice and I used to love drawing. And good for you - I totally get cutting unsupportive people out of your life. In a way, chronic illness has allowed me to start doing this in recent years so I now feel semi-prepared going forward with my autism diagnosis.
@@CreativeAutistic Same, I haven't done any illustration work for years but I'm keen to get back to it, along with all of my other creative interests. Unmasking as a creative process itself (or as one part thereof) might be a topic worth exploring, I haven't seen much acknowledgement of that aspect even though many of us are artistically inclined.
Yep, this would be really interesting to explore at some point 🧡
Sometimes our favorite subjects us, and there's nothing wrong with that. I told all of my friends straight away because I was excited about the topic. I found it really interesting and wanted to thrash it out for a few months or so.
As for everyone else in my life who doesn't know me, they still get whatever layer of the onion I decide to show them. Mind you, when I did tell my friends, I said Aspergers Syndrome because that definition, although it has a dodgy past, excludes the stereo type of what autism is in mainstream entertainment. And avoids such responses as, ' you don't look autistic.'
And as people usually know nothing at all about Aspergers, that gives you the opportunity to explain what it is before any prejudices can set in. Then you can get creative with exactly how you want to explain it. For me, that was mostly talking about an uneven skill set. Like smarter and dumber than you at the same time, just maybe not in those words, lol.
Anyways, you have abilities, as you say, that you've developed to survive, and quite honestly, I feel they're rather admirable in your video presentations. So, I'd say, just be the onion you really are. Those layers are still you and in no way detract from your inner self. More like, they're qualities.
I get around rural Australia, and people just assume I'm another farmer. Lol, I'm so not another farmer but it works for me. Just as I can pass as being university educated when I'm just not. And much more and so on. Thought the real me comes out to play as well and provably people find it sometimes pretty intense or confronting or perhaps sometimes super boring if they're really unlucky.
I think just be an onion and know which onion layer you're doing and try to pick the best one for the occasion. They're all you, just some are much more you than others.
I'm happy that you exist because the more of us the better really. One of the ironic things I find about people like us, if you don't mind me saying 'like us' (just look how diplomatic that was) is that we usually get along really well, but we rarely meet because we love to keep to ourselves most of the time.
Though, I'm sure there's plenty of us online wasting time right now lol.
I do hope you keep popping out more videos🙂
That's lovely feedback, thank you! And yes, I feel like I'd get on well with so many people in the Autism community here but I'm happiest when I'm on my own. I'm just grateful the internet exists so we can all connect with each other.
Before knowing I may be autistic we moved away from family (3 states away). A couple years ago we thought about moving back to be near them all again. I became very anxious and overwhelmed with the thought of it all that my husband decided we should just stay put. Now looking back, I know why I was so bothered by it. Since we've been living here alone, I am only around my husband and kids, to move back to being around all these people meant I was going to have to manage all my masks with them all and my husband again? We have decided to visit our parents separately once a year. It is overstimulating on our kids (they're all on the spectrum) to go on family trips to see people they hardly know.
This sounds like a much better idea for everyone 🧡
Without a diagnosis, I technically don't even know if there's anything to unmask ...
However, since I'm investigating this possibility for myself, I have sure observed a lot of stuff I didn't really pay much attention to before.
Small stims, feelings of discomfort, sensual things etc., surprisingly fierce reactions to something... whatever it is.
For me, an important part of masking - I think - has always been hiding stuff from myself as well as from others. Not accepting certain reactions, not giving in to overwhelm etc.
All under the assumption that I was like everybody else and therefore had to look, talk, act, feel like everybody else. (Not that I did - way too much PDA for that if you will.)
I suppose it goes a long way to just stop hiding out of fear or shame - just that. Fully arrive at the realisation that you're a foreigner among other people, always have been, accept it and don't hide it out of fear.
The more technical aspects of the mask are okay to keep. Like trying to go for stims that don't distract your colleagues, attempting to understand the unspoken as far as you can, pulling yourself out of a situation when you're overwhelmed without creating a big scene ... That's just trying to get along with others, which is a healthy impulse.
However, when someone is talking to you, and then looks at you weirdly, and only then you realize you've been t-rexing the whole time ... In those moments not feeling ashamed, not trying to gloss over it, I think that's the important part.
Basically being confident that you're okay as the person you are, and leaving to others, if they want to make a big issue out of a hand movement they themselves don't do.
And if they ask, what that was about? Well ... that would be early enough to actually tell them, if you trust them with the knowledge.
Yes, I think trying to have confidence in yourself is key to all of this 🧡
I'm 23 of age (relatively young). A lot of fondness in wittnessing so many positively discovering this, having lived many a years more than I have.
Thanks, Simon. I think there are specific challenges in each age group but it's so interesting learning about others' experiences.
You are the first person I've found on CZcams (or in my life offline) who also hears their eyes when blink.
For me I think it is sometimes the sound of the muscles that move the eyelids and neighbourgh muscles of those muscles,
but I get a alightly different flavor of sound after I scratch my eye when they are itchy,
I'm not sure why exactly, while scratching itchy eyes maybe there are some very small bubbles get created in the liquidy(?) area (tears(?) :), I'm no biologist) under the lids and around the eyeballs, and bubbly liquid versus no-bubbles liquid probably have significantly different sound when messed-with(?) ("scratched").
(PS. I'm not sure how to explain well, sorry I'm not a native English speaker and I can't think of the right word for that part.)
(typo:
alightly = slightly)
You've explained it really well - it does feel and sound a little like air bubbles 🧡
Problem is more, how to unmask, and not to whom, since I forgot what is a mask and what not.
Oh, I absolutely agree. I'll do a video on this if I ever figure it out! 🧡
@@CreativeAutistic Thank you
It's a whole lot to consider. It's not easy. It's hard to know who to tell in real life i have never told my mother in law. Not comfortable with that. But other people i was. You will know when the time feels right❤
Thanks, Jenny. One step at a time, eh! 🧡
No, masking is not a coping mechanism, it is basically like self cutting a type of self harm done due to trauma. I don't know why people is labeling in this soft manner, it is an incredible insidious behavior forced on us because of trauma.
Masking does not mask us, others can still tell us we are odd, it just causes self harm by destroying the real person inside. Why the hell do everyone think it is important to stop masking if it wasn't a big deal?
I appreciate what you’re saying but, for me, masking was (and is) absolutely a coping mechanism. In the 70’s, 80’s and 90’s there were zero accommodations for autistic women and girls and any diagnosis was a rarity. As such, I had no option other than learning how to cope in a NT world.
Has masking left me with trauma and difficulties around my sense of identity? Undoubtedly. However, given the amount of bullying I went through in childhood before learning how to mask (and having zero support at home), I dread to think what the alternative would have been.
I think I've found that people have blown me off when I've told them or they simply don't believe me as I like to look after myself wear make up etc. I do enjoy having friends but even my best friend suddenly has no time for me anymore . I'm 40 and apart from my boyfriend and my dog and mum and sister(I had a older brother who took his own life)my dad passed years earlier in my twentys.
My life is getting more and more lonely.
I'm sorry to hear that - that's really tough. 🧡
In an earlier video, you mentioned having trouble reading and being distracted by patterns.
Have you tried using colored lenses? Temple Grandin mentioned it in one of her books.
Ooh, I heard about this years ago (I think Paddy Considine spoke about it) but I had completely forgotten about it. Thank you for the reminder! 🧡
Masking makes us hate people in my opinion ❤ because we are misunderstood and when it comes off people judge us or dont believe us
It creates a whole lot of difficulties for sure 🧡
Very helpful, really beautiful insights -- thank you! 💜🙏
Glad it was helpful, Caroline! 🧡
if i had to do it again, i would learn from and socialize with other AuDHDers before i tried anything out on NTs. in my experience, NTs are not interested in the topic. most NTs will not take kindly to you unmasking and changing their experience of you. thankfully, autists are incredibly interested in knowing about your past, present and future. I can hear and see the insides of my eyes when I blink. you are welcome. glad you are with us.
Aww, thank you so much! (and yes, this sounds like good advice tbh) 🧡
One of the easiest ways I found to try to explain to neurotypical people what ASD is all about is to try to explain monotropism, which is basically a scientific theory that explains autism created by people who were all somewhere on the spectrum. As it stands now, the diagnostic criteria for ASD is very deficit-oriented but monotropism has a much more neutral language - they did a good job framing it simply as a different neurotype and not a deficit. If it's not an in-person conversation, I typically just send the person a link to the video "The Best Theory of Autism you've probably NEVER heard of..." and let Megan do all the explaining on my behalf. 🤭
Ah yes, this is a great idea! 🧡
Thank you for another great video 😊
Thank you, lovely! 🧡
There is a very good video on neurodiver JENNt youtube channel. About acting more autistic after a diagnosis! For instance ive followed derby county football club since 1986 and i am in the enviroment of 30,000 people, a lot of them making a lot of noise. Before my diagnosis i wondered why i felt so drained when i got home after the matches, and i dont mean because of the ups and downs of following them😂 , i just thought maybe everyone feels like this? . A typical matchday would be meet my brother in law in the crowded pub full of loud male oafs who seem to talk as loud as they possibly can with pint glasses clattering about everywhere, but if i said i didnt want to go to the pub then i would be spoiling his time!!!. Then walk to the ground surounded by people then in to the ground 90 min match. Walk back afterwards. And then my brother in law used to invite me back to their house afterwards so its a long day of crowds and noise , sensory overload. One time on the way back to his house i said i think i will just go home i'm knackered. He then kept qeustioning me on why i didn't want to go back to their house!!!.😵💫 . The long winded point im trying to make is that pre diagnosis i was probably unconcsciously pushing myself on matchday's and after my diagnosis i realised why i was exhausted afterwards and also in to the next day as well. I tried to explain to my sister why i was to tired after the game to go to their house? Saying i need to get home and shut everthing out and rest . But to family its like we'll he used to come all the time before his diagnosis and now he is acting differently More autistic!!!. But its not that i was acting more autistic its that i had insight after diagnosis as to why i felt drained and needed to protect my energy in the future, because i was masking they and others think everything is dandy . I believe a lot of people think autistic people use their autism to get out of doing things because they cannot see or feel the effort and mental and physical cost that pushing ourselves can do to us because we mask until we can get back to our comfortable place and start to breath again!!. Sorry its such a long post!!. Thanks lizzie🙋♂️
Oh crikey, this would all be a complete nightmare for me! 😩 I'm glad your diagnosis is helping you make sense of a lot of things 🧡
Wow, for some reason you remind me a ton of Fran Blanche.
Ooh, I've never heard of Fran Blanche. I should do some investigating!
@@CreativeAutistic She's pretty neat. Proprietress of Franlab, creator of the still highly acclaimed Frantone pedal for guitarists. I only learned she also has autism a few years ago. You have a very similar demeanor to her (but certainly not accent!).
I've just looked her up. Not sure I can see it myself, maybe a tiny bit, but I'm taking it as a compliment as she seems really friendly and super clever 😜 😁