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Siege002
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14 Feb 2020, 2:35 am

First post, and I’m going to give a lot of background and context here, so I’ll put a TLDR at the end.
I’m 36 and recently diagnosed with an “unspecified ASD” (if I remember correctly - it would’ve been Aspergers before the most recent update to the DSM, and I’ve been approaching it as Aspergers).
I had (what I’m coming to learn is) a fairly common experience growing up - being bullied and harassed and generally being made aware I was different, with no understanding of how or why I was different. I internalized a lot of the hurt I experienced, built up some unhealthy defenses that add to my difficulty connecting with people, and just generally had a lot of trouble ever feeling like I belonged in “normal” society.
My explanation to myself for what was different about me never went deeper than “I’m just a weird guy”, and it felt like all the hurt and confusion I’d experienced was just my unlucky lot in life.
A relationship with an insightful, caring woman who took the time to try to understand why I behaved the way I did, combined with seeing a therapist who has a lot of experience treating folks on the spectrum, led to the recognition that I’m an Aspie (also, how do folks feel about that word?), and it’s been so enlightening and liberating.
I’ve gone back and revisited so many moments in my life with this new context, and so much of what I’ve been through and what I’ve done makes so much more sense to me. Instead of being a uniquely “weird guy”, a misfit who just doesn’t fit in anywhere, I’m a perfectly normal neurodiverse person, who’s inability to fit in some places and who’s “strange” reactions to certain social, emotional, and physical stimuli are actually pretty common and understandable.
One thing that stands out to me after a lot of reflection is that most of the regrets I have (and we all build up a pile of them over our lives) can now be covered by the umbrella regret “I wish I’d known sooner”.
I don’t think I would’ve wanted (or needed) intensive therapeutic intervention when I was a child. I don’t think knowing would’ve saved me from all (or even most) of the pain I experienced or mistakes I made. But having the context that I wasn’t just unexplainably “broken”, that there were, in fact, other people like me, and that it made sense that some things didn’t make sense to me... it would’ve helped me so much in processing the pain I went through.
So, all that being said, I heard about something called World Autism Awareness Day and thought “what a great idea!” I don’t blame my family or teachers for not recognizing my Aspergers when I was a child - I don’t have all the classic signs, and (as far as I can tell) the condition didn’t start gaining any sort of widespread recognition until the mid to late nineties (and even then, only really in psychology circles). But I think it’s so important for kids who do have Aspergers to be made aware that they process and perceive things differently from their NT peers, and that those differences don’t make them “bad”, “other”, or “less-than”. Having a parent, a teacher, or friends who understood that my brain worked a little differently would have made a world of difference in my emotional development, and I think it’s important that all kids have someone in their life who they feel understands them.
In reading about WAAD, I came across the history of it - the negative association with Autism Speaks (and the whole pile of seemingly willful missteps that that organization has made), the preference among some for an Autism Acceptance Day, and the view of some folks that WAAD is more focused on the NT experience of having autistic loved ones than on autistic people themselves. But I don’t make any of those associations when I hear about it. I also couldn’t find any recent threads on it.
So, what do people think? Is it a worthwhile cause? Is it too tied up with its own history to be worth the community’s time? Am I overthinking it?

TLDR: I’m a 36 year old and recently diagnosed with ASD. I wish there’d been more awareness when I was a kid so I could have known what was up with me. But there’s some negative history surrounding Autism Awareness Day. What do people in the community think of it?



ASPartOfMe
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14 Feb 2020, 4:15 am

Welcome to Wrong Planet. You will find that the experiences of many members including me who went undiagnosed until well into adulthood similar to yours due to lack of awareness when we were young.

Awareness can be a good thing or a bad thing. Awareness could mean being aware of somebodies condition in order to accommodate and accept them. Awareness could mean be alert to a threat. A lot of Autism awareness has been about being aware of autism as a very bad thing. That is why Autistic rights advocates have set up Autism Acceptance Month and Autistic Pride Day to counter the negative messaging.


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It is Autism Acceptance Month

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CockneyRebel
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14 Feb 2020, 4:22 am

I'd rather call it Autism Acceptance Day. I also like Autism Pride Day as well. We have enough awareness and that type of awareness is very negative. I feel that we need to move away from awareness and move toward acceptance.


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05 Mar 2020, 12:40 pm

I think that having a Awareness day is great could of though better of myself for at least 60yrs.



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05 Mar 2020, 3:38 pm

It would have really helped me if I had found out a few years earlier as though I am not assessed, it would have helped me to understand what has been going on.


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09 Mar 2020, 9:42 am

I totally agree.



Whale_Tuune
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09 Mar 2020, 1:40 pm

It's a useful time to use social media (if you have that) to help educate your friends and family on the conditions. I have several things I'm going to share on social media that day (and that month).


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10 Mar 2020, 9:56 am

I'am lucky to have use of social media very helpful.Whale-Tune is aq36 your test score? Mine is 35 last time.



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10 Mar 2020, 9:58 am

Yep. I seem to be on the border according to AQ, though AQ is sometimes criticized for being too biased about particular behaviors.

I am open about ASD on social media because people tend to be nicer on social media, and also because if I'm going to share about having Autism with my peers, my own page is a better place to do it (I think).


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10 Mar 2020, 10:31 am

Whale-Tuune I grew up in the 40's not knowing what was wrong and fought it till my late 60's then tested twice then the same results as you.I at my age just lve with it my wife who is younger and has a high IQ is my best supporter.



JimberryAndTheCouscous
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02 Apr 2022, 4:56 am

Awareness, Acceptance, Adjustments, Accommodations, Appropriate Accommodation, Ameliorations, Assistance, Advocacy, Appreciation, Access and Advancements Assisting All Autistics..

Advance Autistics!

Advance All!!

Autism Acceptance Day?!

Why is it that the terminology remains so limp?
Because we (autistics) are all so used to being kicked in the proverbials?

How about Autism Advancement Day or Autistic Advancement Day or Advance Autistics Day?

Yes, Autism Acceptance is slightly less pathetic than Autism Awareness though it still sounds to me like 'Please sir can (may) I have some more?'. Almost like, 'Oh well, we are aware of these *****s; might as well accept them'!

Best wishes to you ALL, autistic or otherwise. HaVe A gReAt dAy!

Jim from Jimberry and the Couscous (small Youtuber)


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ExcelsiorMom
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04 Apr 2022, 5:57 am

There needs to be awareness on the services provided for those who are young so that they can get the help they need early in life, there needs to be awareness that in some countries once you reach the age of 21, you will more than likely be thrown out of those services and left to fend for yourself with little support in adulthood. I am one of the few that managed to fly right after getting it wrong for years, but that is my own personal experience and I am more than aware of people who really do need the extra services and they are stuck in limbo, due to geographic location, quality of service, and attitudes people harbor for autism. Especially in countries that do not recognize autism.


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munstead
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04 Apr 2022, 6:29 am

I agree.



autisticelders
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04 Apr 2022, 7:18 am

Seige002, so eloquent. I was diagnosed finally at age 68, and yes, I wish I had known what made me different. Nobody knew about autism in the 1950s and 1960s when I was growing up. I was taught that I was 'bad" and that every one of my multitude of failures was all my fault. I needed to "get with it" "snap out of it" "shape up" but nobody was willing or able to tell me how to do it! It was a huge relief to learn about autism and autism in me explained almost every single painful "why" question of my previous 67 years. I still make mistakes, have struggles, and painful interactions, but at least now I know why. One of the best things about learning about my autism was discovering forums like this full of others like me who actually understood and who could provide years of lived experience's worth of insights and answers, suggestions and support. About awareness day, it is evolving now into more "acceptance" day and beginning to be inclusive of other neurodiversities too. I have no opinion really, for those who want to participate, good, for those who don't, that's OK too. It is kind of like I feel about my own birthday. I am not a "rah rah" or "let's celebrate" sort of person, I try to avoid a fuss, so I try to stay in the background rather than stand up and shout. Each to their own. Glad you are here!


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autisticelders
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04 Apr 2022, 7:27 am

whoops, ghost post from 2020!! ! I must learn to look for dates on posts!! !


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JimberryAndTheCouscous
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04 Apr 2022, 5:19 pm

autisticelders wrote:
whoops, ghost post from 2020!! ! I must learn to look for dates on posts!! !


Hi again autisticelders,

I am unsure what constitutes a 'ghost post'? There are five (now six) entries here from 2022.

Have a great day!

Jim

Jimberry and the Couscous Youtube Channel

ps I am considering using the hashtag #actually autistic on my channel, though I am a little concerned that I may have misunderstood the controversy surrounding the hashtag.
Chiefly, I am curious whether there are any opposed to the use of the hashtag who are diagnosed with autism themselves?
I ask you as I have related to, and have great respect for your blog and I am a newbie here and you were quick and kind in welcoming me. Thank you.
I apologise if this is an innappropriate post or place to post such a post-script! Thank you for your time.


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Jimberry and the Couscous - Too much information
- Failure to habituate
#ActuallyAutistic #Ableism #RightToThrive #Neglect #AutismAdvancement