Relief, Grief & Belief - feelings after diagnosis. New Autistamatic video

[Autistamatic]

It's taken a little longer to complete than usual, but the latest Autistamatic video has just been uploaded.
A couple of months ago we did a video about what you may want to do after being diagnosed on the spectrum and possibilities that arise if you choose to disclose. One of our members @Pats suggested a follow-up on how we feel after diagnosis, so here it is
The members of this forum have been a great resource in making these videos. Your frank and honest views often contribute to the process of writing and producing all of them. Thank you to everyone who has posted about their experiences and feelings after diagnosis over the years on here. You've helped a great deal in putting this video together.
A big thank you must go to the moderators and admin of the site too for making this a safe and friendly place for us all to share our views and find support in others like ourselves.

As always I hope you enjoy the video and constructive criticism is always welcome

 

[Pats]

Seriously, this video brought a tear to my eye. You hit on everything so perfectly. Everything was easy to understand and follow. Thanks from the bottom of my heart for what you do.

 

[Pats]

To add. I loved what you said about our life never going back to what it was. You're so right - where did you get that?
It's like: I work jigsaw puzzles on the computer using "Magic Jigsaw Puzzles". It's impossible for me to view the puzzles and work them the way I did when I first started several years ago. I learned that the shapes of the pieces are the same, just the scenes are different and I catch myself putting the shapes in the spot they go in (even if there are no other pieces in that area). I sometimes try to work the puzzle by the picture, but I can't stop myself from putting the recognized shapes where they go, too. It'll never be the same.
Same as the autism diagnosis and I'm so glad you brought that up.

 

[Theta.G]

Yahooo~ another video
brb grabbing some popcorn

 

[Autistamatic]

Yahooo~ another video
brb grabbing some popcorn

Ooh yum! What flavour?

 

[Theta.G]

Ooh yum! What flavour?

Was out so had so had left over chinese food instead haha
great video

 

[the_tortoise]

I chose "other". I felt many things all at once. It was a dizzying and overwhelming experience.

I felt relief and hope...Perhaps I could now explain myself to others and they would actually listen to me -- wouldn't automatically dismiss unusual difficulties or argue that it was something else entirely (the "something else" things usually seemed bizarre to me, I couldn't work out what it was that had caused people to believe whatever-it-was-they-believed and on the very rare occasions I figured out how to ask for information about their perspective and reasoning, people would either mistake my questions as rhetorical rather than genuine, or explicitly refuse to explain for reasons I can only guess) because now there was a professional assessment that legitimized my experiences and might make people open to the possibility that what they thought they knew about me was wrong. Perhaps more misunderstandings would be fixable, or misunderstandings might happen less in the first place (at least with people I knew well or people who were educated about autism). Perhaps I would find help and solutions for at least some of my difficulties and would be empowered to make my life better.

I also experienced bitter disillusionment, which caused grief and despair (although it was much worse when I had been diagnosed with ADHD some years earlier, when I saw clearly how the ADHD affected my life in a crushing moment of difficulty.....I guess I was sort of prepared by that earlier disillusionment because the two disillusionment experiences were so fundamentally similar). It's great to know that you aren't a lazy, terrible person who has developed delusions to explain being a lazy, terrible person -- to have someone validate that, yes, you are doing your best at all these things you keep failing at that people have been telling you it's impossible for anyone to fail at unless they choose to; But it's terrible to realize that no amount of effort or experience will ever make the difficulties go away....that these limitations are things you have to live with forever, they are a permanent part of who you are. (There is a very good chance I would not be alive today if I had not received a diagnosis, so I can't say that I ever grieved for a life wherein I was not diagnosed.)

There were hurt feelings; fear of judgement, stigma and rejection; and an uncomfortable/wary self-consciousness. The diagnosis could open doors for accomodations and understanding, but it could just as easily cause doors to slam in my face. People might pity me (I hate being pitied -- pity to me is feeling bad for someone while also looking down on them, without compassion) or infantilize me (people already did that -- they always have, even without knowing I have autism....they see differences, they make assumptions -- would it now happen even more, happen immediately if people knew my diagnosis?); They might refuse to consider that I have valuable skills and talents; They might devalue my perspective and my ideas -- not take me seriously about just about anything; They might disregard my needs/rights when it came to automony and making my own decisions about my life. I thought about how many people in the world would and did "other" autistic people, and the hurt I felt was deeper because it was now personal, not an empathetic imagining generated by thinking about my own experiences of being similarly "othered" for different reasons.

I was lost in all the words about autism, confused about all the categories and concepts involved in thinking and talking about autism. This added frustration to the mix.

 

[Autistamatic]

Thanks so much for sharing that @the_tortoise it was really touching. I may do another on this topic at a later date because once started on it I realised how big a topic this actually is. There's a whole video just in discussing experiences like you've just shared with us.

 

[Kyou Nukui]

It's taken a little longer to complete than usual, but the latest Autistamatic video has just been uploaded.
A couple of months ago we did a video about what you may want to do after being diagnosed on the spectrum and possibilities that arise if you choose to disclose. One of our members @Pats suggested a follow-up on how we feel after diagnosis, so here it is
The members of this forum have been a great resource in making these videos. Your frank and honest views often contribute to the process of writing and producing all of them. Thank you to everyone who has posted about their experiences and feelings after diagnosis over the years on here. You've helped a great deal in putting this video together.
A big thank you must go to the moderators and admin of the site too for making this a safe and friendly place for us all to share our views and find support in others like ourselves.

As always I hope you enjoy the video and constructive criticism is always welcome

Liked it, commented and subscribed. Excellent video. Thanks!

Some of the visual illustrations of common figures of speech are overly literal. But I find humour in that, which lightens the mood, so for me it isn't really a bad thing.

 

[Autistamatic]

Some of the visual illustrations of common figures of speech are overly literal. But I find humour in that, which lightens the mood, so for me it isn't really a bad thing.

I can't afford to pay for clips so I have use what's available in the public domain or animate with still pics. It's become a bit of a joke now seeing the same free clips I have used or seen online, being used in YouTube videos by channels with millions of subscribers.
Thanks for the like, subscribe etc. It all counts

 

[Kyou Nukui]

I can't afford to pay for clips so I have use what's available in the public domain or animate with still pics. It's become a bit of a joke now seeing the same free clips I have used or seen online, being used in YouTube videos by channels with millions of subscribers.
Thanks for the like, subscribe etc. It all counts

Oh I just meant they are strangely literal. I don't care that they're cheesy!
I decided to stop actually watching on the last couple of the videos, instead I put the phone down next to me so I can concentrate better on listening to what you are saying.
It was my pleasure to like and sub!

 

[TheFreeCat]

Pride. Rage. Broken. Determined. Loss. Hopeless. Confused.

 

[Autistamatic]

I put the phone down next to me so I can concentrate better on listening to what you are saying

Whilst we're concentrating on getting the YouTube channel established and building a social media profile for the channel (my wife helps me with that), a later project is to re-record the scripts as podcasts and perhaps as a written blog.
Thanks for the "furry" comments you left on YouTube. Any and all interaction on YouTube contributes to the likelihood of the videos popping up in people's feeds and visibility in searches.

 

[Otenba]

Liked the video. Very good. Could relate very well, despite still waiting for my own diagnosis assessment. Shared it. Subscribed. Thank you for making it.

 

[Autistamatic]

Liked the video. Very good. Could relate very well, despite still waiting for my own diagnosis assessment. Shared it. Subscribed. Thank you for making it.

Thank you for liking it

 

[Otenba]

Thank you for liking it

I think it's very helpful for getting people close to me to understand how I feel right now while I'm waiting assessment. It's been hard to explain to them myself. Thankfully closest friends have explained that they still just see me as me which helps because I know they won't hate me for changing but others.. well, the dismissiveness from some has been painful. At least one person told me that I'm not autistic, but many have said they think I am. I can see it too, but I want the assessment to be sure. I've had to stop visiting certain people because I keep feeling not okay around them now, especially people who enjoy misdirecting others for their entertainment (they're not trying to be spiteful, but it does get old fast and exhausting to be around this sort of behaviour). It's been difficult to carry on putting up with managing others responses to me since I realised about potentially being autistic. It's bought me to tears at times, so feel it best I give myself space while processing this new understanding of myself. Hopefully I'll be in a better place in the next year or so as I work out who I really am. I'm thankful that my husband has been super supportive too. He's the one who brought autism to my attention after years of struggling. Thank you.

 

[Autistamatic]

@Otenba I hope more than you know that you get your answers soon. Certainty beats doubt every time. I'm so glad yóur husband is supportive. You're lucky there

 

[Adora]

I chose other because I felt a combination of things,when I found out that I am on the spectrum I felt some relief but I also felt some grief and sadness too,I felt relief because I had answers to not just my problems but also why I am who I am and why I have always struggled with social issues and even why I couldn’t look people in the eye and it even explained my toe walking that I have done since I was a child,there are many other things I feel relieved about but there is also the grieving aswell,I grieve the fact that I went 31 years not knowing I am on the spectrum and during that time I went through many struggles and traumas which also made me get some mental health issues along the way,I also grieve the person that I could’ve been if I was a wasn’t on the spectrum or even just being on the spectrum minus the comorbids because it’s the comorbids that have impacted a lot in my life aswell,I am also sad because I feel like I wish I knew earlier because maybe there could’ve of been some early intervention and been able to access the right help at school because I really did struggle compared to other kids in my class,even now I have these mixed feelings and while fully accept being on the spectrum because I finally have answers I also grieve the person I could of been.

 

[Vince]

I am 54 and have lived as a hermit for the last 15 years. As you get older, the yearning for love and sex diminishes some so it eventually became easy enough to just give up on expecting it and learn to accept that being a loner is probably just my lot in life. There was some relief from that because rather than living a lie, wearing a mask and trying to imitate people in my life I admired (an uncomfortable and fruitless endeavor), being "myself" was simpler and less unnatural. These past 15 years I would describe myself as "alone" but not really "lonely". I just shut down those feelings of loneliness along with the rest of it.

But recently I met a woman with a sweetness and honesty that made me want to try again. I eventually figured out that being in a loving relationship would seem to be an important possibility for a more meaningful life, i.e. reciprocal responsibility to someone (and her grown children) other than myself. We've been on a few dates, but of course I can't read signs and I've been around long enough that I know there have been signs o' plenty on display. It's frustrating to know this, but I tried to just communicate in words as best I could and fish for verbal replies to which I can adjust my actions.

Long story longer, in the process of researching dating at my age (of COURSE an aspie would do that!) I ran across some tangent website or video which described AS. I realized that I tick nearly every box on every list I found. And I feel like a total moron that it took me so long to consider it, especially since, as aspies often are, I have a very high I.Q., or at least I used to (I saw my IQ when I was 18 but I.Q. diminishes over time). The only "atypical" behaviors I seem to have (or lack I guess) because I have worked through in all these years is that 1) I have found rewarding employment that is a good fit and 2) I actually enjoy conversation with one or two people at a time. I don't necessarily seek it out but I don't resist it like I did when I was younger, though I still feel varying levels of fatigue afterward whether in person or via phone call. I'm not good at nor enjoy light chitchat, but once past that point I actually think I'm pretty good at conversation, but then again I might be the last to know on that score so...
I do feel very fortunate though regarding the degree to which I suffer compared to many others. At least nowadays anyway - life was much tougher when I was younger.

It seems clear to me that I'm an aspie, and likely just the knowing could help at least some. For example, I have anxiety often and always have (to varying degrees during different phases in my life). All this time I figured the anxiety just came out of nowhere as it always seemed like it to me. But now it seems clear just quickly flipping through my trash truck of memories that there is a direct connection between many of my worst anxious times and the socially stressful events preceding them.

I'm not sure it would help me at my age to get an official diagnosis. So I will likely remain "self-diagnised" from here on. I just doubt there is any benefit from getting an official diagnosis at this point (unless I'm missing something). I'm trudging through life OK and it mostly affects my personal life, so not much help I can get from any agencies or the like. Though I do plan on talking to a therapist about it at least a bit.

Anyway, just last night I explained to my date that I'm 95% sure I am AS. Too bad I just found your video today - I might have hesitated a bit on that. I was not exactly "excited" to realize what this is, but it did seem an evident explanation for why I am the way I am. But I was relieved and please to learn that maybe through the understanding, I might be better equipped and prepared to navigate pretty much through every day. Anyway, my date's reaction was confusion and maybe a bit of repulsion. It's difficult to tell of course because I'm AS dammit! But I'm pretty sure it wasn't sitting well with her. Afterward my brain was all locked up in the worry and everything afterward was awkward. I got a couple medium-nice kisses (whatever that is - hey I dunno either kids, I'm wingin' it here) during the evening, but I still don't think it ended well, nor do I think it's going to get any better. I should have just shut my trap and continued to try to work through it like I have to do in everything else.
Oh well.
Anyway, glad to see this helpful video regardless. It's useful to know what's going on or what might be.

So what is going on anyway? I can never tell. I'm helpless this time, but maybe hopeful long term.

 

[Autistamatic]

Hi Vince and welcome to the forum

It's good to hear that you've managed alright in life despite your difficulties and I'm glad you've started to open yourself to possible causes. Formal diagnosis has a number of benefits, not least of which is removal of doubt, but nevertheless, realisation is itself a major epiphany.
Joining this supportive community is a great start to discovering that side of yourself and coming to terms with what AS might mean to you. Whether you choose to pursue formal diagnosis or not, you've arrived at a place which will embrace and understand your differences