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Megh
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10 Mar 2024, 4:26 pm

I am a late self diagnosed autistic woman (37). My young son was just referred to screening. It wasn’t until my research for him that everything in my life suddenly made sense. I was checking the boxes for myself as well.

I’m experiencing an array of emotions. I’ve been elated and also grieving half a life of being unsupported and misunderstood. I’ve masked and internalized my autism my whole life and don’t know where to begin to take off the mask so I may be free- so I may be my true self.

Im wondering if any one here can offer advise or share their honest journey of late diagnosis/unmasking. Thank you!❤️



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10 Mar 2024, 6:51 pm

Hi Megh, and welcome .

I'm recently diagnosed, having realised a few years ago that I likely was Autistic.

I relate a lot to the experience of seeing everything in your life finally making sense when viewed through the perspective of having Autism. It can be a huge shock initially... I'd imagine you may have lots of 'if onlys' and 'things could have been different if...' going through your mind, that's pretty natural. While it's good to get some understanding there's going to be some grief as well. Be kind and gentle with yourself.

As far as advice, my 2 cents is to grab hold of your life and don't let this new awareness paint you into a corner. Don't let the definitions of this 'disorder' define who you are. Accept the challenges that are imposed by the condition but strive to overcome them. Accept that you will need to do things a bit differently to be able to take care of yourself properly, and some people may not understand that. Embrace everything that comes with it, because it's part of who you are, but there's more to who you are than this. It's only a bad thing if you choose to see it that way.

Welcome to the tribe, we're a pretty awesome bunch even if (I would say because) we're a bit weird. :D


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10 Mar 2024, 9:11 pm

Megh wrote:
I am a late self diagnosed autistic woman (37). My young son was just referred to screening. It wasn’t until my research for him that everything in my life suddenly made sense. I was checking the boxes for myself as well.

I’m experiencing an array of emotions. I’ve been elated and also grieving half a life of being unsupported and misunderstood. I’ve masked and internalized my autism my whole life and don’t know where to begin to take off the mask so I may be free- so I may be my true self.

Im wondering if any one here can offer advise or share their honest journey of late diagnosis/unmasking. Thank you!❤️

A lot of unmasking is likely to involve dealing with the resulting dissociation. If you've got the money and can tolerate the stimulation, theme and amusement parks are a great place to try unmasking. I went last week and I saw a number of NDs stimming and the like without anybody else paying attention.

The whole thing can be rather tricky to figure out as anybody that's capable of masking well enough to go nearly 40 years without a diagnosis is likely operating on a longer time frame. There's a bunch of stuff that I do for reasons that I don't really understand. Most of it is based on something that happened months, or even years, earlier and is now more or less just how I do that.



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11 Mar 2024, 6:45 am

Megh wrote:
I am a late self diagnosed autistic woman (37). My young son was just referred to screening. It wasn’t until my research for him that everything in my life suddenly made sense. I was checking the boxes for myself as well.

I’m experiencing an array of emotions. I’ve been elated and also grieving half a life of being unsupported and misunderstood. I’ve masked and internalized my autism my whole life and don’t know where to begin to take off the mask so I may be free- so I may be my true self.

Im wondering if any one here can offer advise or share their honest journey of late diagnosis/unmasking. Thank you!❤️


Welcome to Wrong Planet.

Adults finding out they are autistic when researching for their children is a very common, probably the most common way adults find out.

Strong mixed emotions when finding out are common also. Not only have others misunderstood you, you have misunderstood yourself. This has gone on for 37 years so it is going to take time to figure it out so have patience with yourself. All of these emotions are your autistic brain processing this information. My advice is to not fight these emotions, let your autistic brain do what it needs to do. As with any process this journey will involve setbacks and mistakes, forgive yourself for them.

Don’t hesitate to come here to ask questions. Don’t let fear of sounding stupid hold you back. If you just need to vent do that also.

Good luck.


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Megh
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11 Mar 2024, 10:27 am

Thank you so much for your replies.

For background context, I could add that my mother has borderline personality disorder with high narcissistic traits (I have been no contact with her for 3 years). I was her golden child growing up so there was enormous pressure to appear normal and to be high achieving (que masking and internalizing my differences). With this, there was a lot of perfecting, performing, and pleasing required of me. I perform and please for anyone in front of me. I become who I think they want me to be.

It feels both liberating and disorienting to be meeting myself for the first time and yet, when I zoom out from the present, I know I will thrive one day. I know I will (mostly) be the solid ground for which my son will be able to anchor onto.

I really appreciate the encouragement and wisdom you have offered. There is so much to process and feel and it’s reassuring that this is all part of the process. It’s ok to be right where I am and I look forward to moving toward understanding, acceptance, and love for the ways I’m different.

Above all, I’m relieved my son won’t ever have to feel alone and that he will grow up embracing and being embraced for who he is.



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11 Mar 2024, 12:13 pm

I was also delighted when I go my diagnosis. It explained so much!

I finally knew what was wrong with everyone!

And I cannot offer much insight on unmasking. I am an extreme introvert and got my diagnosis right before the Pandemic so me and my diagnosis have not gotten out together much.

My one observation is that your friends and family probably already think you are strange. (Mine did!)


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ChicagoLiz
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11 Mar 2024, 2:30 pm

One of the first realizations after my late diagnosis was: this probably explains my extremely difficult mother as well. She would never pursue a diagnosis, so I'll never know for sure, but all the behaviors that seemed like narcissism, borderline personality disorder, etc. could be explained by autism instead, including the fact that she clearly had lifetime PTSD from sexual assault when young -- probably multiple instances, at least once in puberty and then once at 17 when she started college but dropped out after a few months and disappeared for approximately 9 months -- which is a well known hazard for autistic girls and women in particular. It has softened my understanding of her, although I will still never let my guard down.

As for unmasking: I would say you're going to need to spend time just noticing how you react to things, and then mull over whether you'd like to change that in future. See where you're having the most issue when around other people; is there something you can change there, to be yourself more instead of reflexively trying to be 'normal'? Don't obsess over changing yourself all at once! These are long-time habits, and thus not easy to change. And you might not feel the need to change too much, anyway.

For me, one of the biggest things is noticing what exhausts me or stresses me out the most, and taking steps to mitigate those situations. That helps me realize that when I think I haven't done as much as I want to, it's because I'm battling uphill most of the time, so of course I can't do it all.

Basically, it's a process. You won't have it all figured out in a week, or a month, or a year. But now you know, so at least you've started on the path.


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11 Mar 2024, 2:45 pm

ChicagoLiz wrote:
As for unmasking: I would say you're going to need to spend time just noticing how you react to things, and then mull over whether you'd like to change that in future...For me, one of the biggest things is noticing what exhausts me or stresses me out the most, and taking steps to mitigate those situations.


I really like and second what Liz is saying here.

I am neurotypical but my husband is an aspie. He was also diagnosed late in life. Like you, he was a golden child. It was a shock to us both to reimagine his quirks as disordered instead of amazing. His diagnosis is long in the past now, and we have returned to mostly seeing him as amazing. But it has been nice to no longer try to shove the round pegs into the square holes. Life is easier having a better idea of what works for you. Navigating with your kid will be MUCH simpler.

I would be careful in who you disclose your new understanding to. The way that you understand autism may not be the way they understand autism. You don't want to give a uneducated person the chance to redefine you. That's for you to decide.



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11 Mar 2024, 3:14 pm

Megh wrote:
Im wondering if any one here can offer advise or share their honest journey of late diagnosis/unmasking.


Everyone's experience is unique, so I'm happy to share mine, but I'm not sure how much will be useful to you specifically. Like you, I was diagnosed at 36, though I've had a diagnosis of ADHD since I was a kid. I don't have a child myself. Rather, the impetus to seek evaluation had to do with my finally landing the job of my dreams and then promptly experiencing a slew of worsened executive function issues that I now understand are all parts of acute autistic burnout caused by years of heavy masking. Unmasking was a must. -but I was/am scared to be more forthcoming about these differences I have, especially since I learned to be shamed of them and hide over the years. What follows is a list of the major unmasking and life-improving projects I've been working on in the two years since:

1) Probably number 1 on my list is face blindness. I had to break the habit of making up excuses when I don't know who is talking to me. At first it was embarrassing but I've found people can be pretty understanding when you explain it's a diagnosed condition. Even for autistic people, this one is a little weird, so I think people are usually more curious than judgmental.

2) Avoiding uncomfortable clothes. I teach at a university, so "dressing down" is something I was worried I'd get a lot of flack for. It turns out, no one really cares, so long as I am showing up clean, healthy, and ready to do my job.

3) Setting aside extra time for "context maintenance", a term I admittedly made up. I'll explain. I've come to understand that a lot of issues for people like us can be traced back to the pattern that our functioning and memory is far more context-dependent than for other people. For instance, I have trouble deciding what to do and in what order, especially first thing in the morning when the whole day is ahead and all the things I need to do seem like an impossibly long list to even make, much less complete. Each morning, I'd get stuck in a traffic jam of thoughts about day planning and I'd leave the house without important items or pieces of clothing, which then cost me precious work hours from the day as well. Now I decide what I will wear and I fold it and lay it on the bedside table the night before. I also make my lunch and pack my work bag the night before, laying it and my empty lunchbox on my bedside table next to my clothes. That way I don't get crippled by all of the decisions each morning and I can focus on things other than the life-context-items that everyone else takes for granted in a day. Another important piece of context maintenance is keeping a clean and organized office. I mark weekend days in my work calendar each semester to reorganize and update everything. That way, when I come in to work I can focus on the main task of the day, and not spend tons of time trying to remember where things are, forgetting what I was supposed to do in the process.

4) Using Calendly to reduce stressful communication about scheduling. I can’t think of any conversation that causes more stress than endlessly going back and forth about when I am “free for coffee” or “what week is good for me to visit” or “can I meet to talk to you about something?” With a Calendly subscription I can just send them all a booking link that lets them reserve times with me. They can see when I am available, but not what I am doing in the other times. This allows me to priorotize blocks of self-care time and private appointments over work requests and friend hangouts without people having to know about those details. The appointments automatically populate into both people’s chosen types of calendar and are cancelable by either party.

5) Admitting I don’t know what I’m doing with money and hiring a financial advisor. For years I did my best to figure out what decisions to make on my own, but there is so much technical language involved in anything you can read, and recommendations you find online are always based on people with different lives and goals. When I went through a period where it felt really hit or miss about whether I could hold down my job it became apparent that I needed help fast. My therapist recommended someone who often worked with people like me. It has been amazing. I now have a series of safety nets available. It makes it so much easier to feel less stressed and to focus on other things in life.



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12 Mar 2024, 11:01 am

Hey, welcome.

you're spot on with your diagnosis. Don't doubt. We aspies have a strong inner compass, you can trust it.

second: you'll need another 3 months to review your life and see the different truth about it and grieve it and scoff in disbelief and roll your eyes and also grieve again about all the missed chances, missed good intentions, missed hugs and appreciation.

In the mean time don't reason with any thing you(r body) comes up with that bothers you, drains your energy, doesn't make you happy. Accept as is. You are differently wired than the people for whom all the shoulda-woulda-coulda's been written so you can practice leaving all those rules and judgements behind you.

Wear ear mufflers when your family chews too loud.
Cut tags out of your shirts.
Bow out of social gathering that you know will leave you exhausted.
Take up knitting and find another aspie with whom you can sit on the couch, near each other but not facing each other, each doing your own thing, just enjoying the company, si-lent-ly. (Lots of us knit. Find us on ravelry site.)



Megh
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12 Mar 2024, 12:28 pm

I wasn’t sure about joining this platform and posting and I’m so glad I did. I feel held, understood, and validated by your responses. Thank you for sharing your experiences, which often reflected and affirmed my own. It’s a relief to find some shared humanity at last.

You’re all right that this is going to be a long process to unpack and rearrange… My autistic brain is hitting the ground running, trying to figure this all out at warp speed. :) A good reminder I need to make time for other things, too.

What has also been illuminating is understanding my father now. He passed away in a work accident when I was 21, so I didn’t know him much as an adult, but I can say with 99% certainty that he was autistic. SO many things make sense now about his behaviors. As a child, I had this unspoken sense of feeling similar to him, in a way that was different to most people. I never understood what that feeling meant until now. I wish he were alive so I could tell him that I love him for how quiet he is and that it’s ok that hugging isnt comfortable for him. I understand now why every hole in his waffle had to be filled and with equal amounts of syrup. :) And why he ate the same lunch everyday and why he didn’t have a social life, and worked a solitary job.

It’s quite a time - piecing all of this together.

I also appreciate the advice to be careful who I share this with. It’s not for everyone. Especially in this delicate time of learning what this means for myself. I know in my body that this diagnosis is true for me, but I still have moments of wondering if I’m delusional, or if this is accurate. Perhaps this is part of processing it all in the early stages.

Oh! And the not remembering faces thing- I have that. There’s finally an answer for that too! I can recognize faces that I see often, but if I’ve met you once, I probably won’t recognize you again. I had someone attend my art workshop for a second time, a couple years apart, and I didn’t recognize them the second time. I felt so embarrassed. I can’t tell you how many times after introducing myself someone says, “oh yes, we met already…”.

Whew..

Again, thank you to everyone of you. I feel so much less alone. :heart:



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12 Mar 2024, 12:57 pm

Re face blindness...I try to be nice to everyone. I never know, I might know them!


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12 Mar 2024, 2:23 pm

Double Retired wrote:
Re face blindness...I try to be nice to everyone. I never know, I might know them!


I used to do this, but it can actually get me in big trouble at bars. I would end up talking to people who were overly familiar with me only to find out deep in the conversation that I didn't know them at all. I was just getting hit on. :lol:



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12 Mar 2024, 6:07 pm

Fern wrote:
Double Retired wrote:
Re face blindness...I try to be nice to everyone. I never know, I might know them!


I used to do this, but it can actually get me in big trouble at bars. I would end up talking to people who were overly familiar with me only to find out deep in the conversation that I didn't know them at all. I was just getting hit on. :lol:

(A) I only try to be nice, not friendly.
(B) You are undoubtedly more attractive than I.
(I am not hitting on you. I am happily married and my bride was born and raised in Texas, was in the military, and used to shoot skeet competitively for fun. I am happily married and not interested in straying! I'm just trying to be nice.)


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12 Mar 2024, 6:55 pm

Megh wrote:
I wasn’t sure about joining this platform and posting and I’m so glad I did. I feel held, understood, and validated by your responses. Thank you for sharing your experiences, which often reflected and affirmed my own. It’s a relief to find some shared humanity at last.

You’re all right that this is going to be a long process to unpack and rearrange… My autistic brain is hitting the ground running, trying to figure this all out at warp speed. :) A good reminder I need to make time for other things, too.

What has also been illuminating is understanding my father now. He passed away in a work accident when I was 21, so I didn’t know him much as an adult, but I can say with 99% certainty that he was autistic. SO many things make sense now about his behaviors. As a child, I had this unspoken sense of feeling similar to him, in a way that was different to most people. I never understood what that feeling meant until now. I wish he were alive so I could tell him that I love him for how quiet he is and that it’s ok that hugging isnt comfortable for him. I understand now why every hole in his waffle had to be filled and with equal amounts of syrup. :) And why he ate the same lunch everyday and why he didn’t have a social life, and worked a solitary job.

It’s quite a time - piecing all of this together.

I also appreciate the advice to be careful who I share this with. It’s not for everyone. Especially in this delicate time of learning what this means for myself. I know in my body that this diagnosis is true for me, but I still have moments of wondering if I’m delusional, or if this is accurate. Perhaps this is part of processing it all in the early stages.

Oh! And the not remembering faces thing- I have that. There’s finally an answer for that too! I can recognize faces that I see often, but if I’ve met you once, I probably won’t recognize you again. I had someone attend my art workshop for a second time, a couple years apart, and I didn’t recognize them the second time. I felt so embarrassed. I can’t tell you how many times after introducing myself someone says, “oh yes, we met already…”.

Whew..

Again, thank you to everyone of you. I feel so much less alone. :heart:

You are welcome. We are all glad you found us and we are able to help you meet yourself. When I found out went through very similar emotions. I consider the day I got diagnosed my second birthday.

How people react to disclosure varies widely and plenty of times people react in different ways than you expect. As Autistics this is frustrating but you can't control how other people.


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12 Mar 2024, 7:05 pm

Double Retired wrote:
Fern wrote:
Double Retired wrote:
Re face blindness...I try to be nice to everyone. I never know, I might know them!


I used to do this, but it can actually get me in big trouble at bars. I would end up talking to people who were overly familiar with me only to find out deep in the conversation that I didn't know them at all. I was just getting hit on. :lol:

(A) I only try to be nice, not friendly.
(B) You are undoubtedly more attractive than I.
(I am not hitting on you. I am happily married and my bride was born and raised in Texas, was in the military, and used to shoot skeet competitively for fun. I am happily married and not interested in straying! I'm just trying to be nice.)

OK. Once I had a girlfriend. My bride was miffed. (It's not what it sounds like...check here!) :roll:


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When diagnosed I bought champagne!
I finally knew why people were strange.