32 Comments
Apr 11, 2023·edited Apr 11, 2023Liked by Amy Yuki Vickers

Hannah Gadsby is very funny. Your line saying: "You may call it oversharing. I call it living authentically," was great, and authentically you. I immediately thought of Temple Grandin who was/is more empathetic of and more comfortable with animals than humans. So, someday I'd like to hear or discuss more. For example, I can be socially awkward: chitchat usually bores me and my parents were no social butterflies, so poor home models. And, this may sound terrible (I also think it's not unusual) but, I find seeing (in movies, say, god forbid not in real life) suffering animals more unbearably horrific than seeing suffering humans. I think it's the innocence--so a human baby or child also pulls at one's heart. For better, mostly, there's much more tolerance of differences and nonconformity now than the beginning of the "enlightenment," my word, the 60's and 70's, when I grew up: the Age of Aquarius, but also the tail end of "Father Knows Best."

If you're ever comfortable with it, I'd like to hear more.

And I just saw your reply to Tom, so, whatever you're comfortable with is fine.

Expand full comment
author

I recently read Temple Grandin's book The Autistic Brain, and it had a lot of really fascinating information about autism in it. Like her, I have a above average visual memory, but mine is not nearly as good as hers.

It's interesting what you've said about nonconformity because I was thinking the opposite. I feel like the reason so many people are diagnosed with neurodiversity these days is because what qualifies as "normal" has become really narrow. The homogenization of culture brought on by social media means that mainstream values are in everyone's face all the time. Back in those previous eras, mainstream culture might've been more strict, but it was easier to put on blinders and do your own thing. Now, there's so much pressure to have that Instagrammable life, try to capitalize on everything and be a "boss" that when you don't do that, you're not merely odd, you're pathologized.

If you want to explore whether you're on the spectrum, the things that pointed me in the right direction were Hannah Gadsby's memoir, the YouTubers: Mom on the Spectrum, Yo Samdy Sam, and Autism on the Inside. Even though I resonated with everything in these resources, I was still skeptical until I scored high on multiple autism evaluation quizzes on the internet. That's when I knew I needed to get an assessment.

I think it's pretty normal for people to care more about animals than people. Regarding that, I read a NYT article the other day that made me think of you:

https://www.nytimes.com/2023/04/02/opinion/pets-life-cats-dogs-guilt.html

Expand full comment
Apr 11, 2023Liked by Amy Yuki Vickers

Thank you for the info. I'll check it out.

I had seen the article about ending a pet's life but hadn't read it until now. I'm glad I did: moving and helpful.

I'm looking forward to hearing more on your journey

Expand full comment
author

Thanks for commenting. I don't have time to write a full reply today, but I'll write tomorrow.

Expand full comment
Apr 11, 2023Liked by Amy Yuki Vickers

Such a brave and forthcoming telling of your truth. Your fans still love you; now we have have new ways to understand, accommodate relate to you! <3

And who knows... maybe someone else on this comment thread found a nuggwt of their own truth in your words!

Expand full comment
author

It's totally possible that someone might recognize themselves in it. I was only able to recognize the traits and then get an assessment because of other adult women with ASD put their experience out on the internet.

Anyway, thanks. It was hard putting it out there, but like I said, I knew it was inevitable. I'd grown accustomed to hiding the traits from an early age because I knew they weren't "normal." As I've gotten older, trying to be anything but myself has gotten harder and harder.

Expand full comment
author

Thanks for commenting. I don't have time to write a full reply today, but I'll write tomorrow.

Expand full comment

Wow, that was really brave to be that forthcoming and honest. That must have been really scary! I’m scared just thinking about being that honest. Thank you for sharing this; it helps me understand you but it also poses a really interesting example of how forthcoming one can be with others.

Expand full comment
author

Thank you so much, Tom. It was very scary posting this. I'm still waffling on sharing my post on social media. However, like I said in my post, I knew it was something that had to happen. I'm so much more comfortable in a state of openness.

It helps to be able to take my time writing a post and then put it out there for everyone all at once, rather than tell people through a series of awkward conversations. It's one of the ways that technology is so helpful for me. I used to always say there was a problem with my brain-to-mouth interface.

Expand full comment

Amazing post, thank you for sharing. On the one hand, it helps me understand how others can think, on the other it helps me understand myself a bit better too. I don't think I would classify as autistic, but several things you described I recognise, like learning how to copy other people's behaviour in social situations until you blend in. In recent years, for a large part I stopped caring about fitting in, and now I only participate in social situations if I feel like it. It's kind of a balance now, between making an effort and joining in & being authentic to myself and doing my own thing. Long ago, a friend told me I was a 'highly functioning autist'. I always thought it was an insult, but now I'm thinking maybe it isn't. Maybe it referred to how I manage these different aspects of my brain, harness their strengths and managing their weaknesses. Anyway, thank you for sharing, it made me think about all this again.

Expand full comment
author

I stopped trying to fit in a long time ago, too, but I still need connection with other people. Being myself without the ASD label never seemed to work because then I was just "weird." With the label, people seem to like me better. I'm still working out why.

I'm not a big fan of the term, "high functioning." When it was first coined in the 1980s, it merely meant a person with ASD with an IQ over 70. I think most people think it means a person with ASD who can adapt to a neurotypical setting. Because of technology, we now know that some completely non-verbal people with ASD actually have high IQs. So, it's all kind of meaningless, which is why they moved away from ASD categories (Aspergers, etc.) to a spectrum.

Anyway, there are a lot of successful people with ASD, say they believe themselves to be ASD, or appear to be ASD from the outside. If you look them up, maybe it'll look more like an asset to you.

Expand full comment
Apr 16, 2023·edited Apr 17, 2023Liked by Amy Yuki Vickers

As an (almost) 40-year-old man who only got diagnosed with ADHD last year, this post is very relatable. I was also sent to a neuropsychologist to get tested for suspected spectrum disorder, basically because ALL the things you describe in this post also afflict me, but the conclusion was that I am not on the spectrum. My wife is sure that I am. I think I probably am too.

Tom from Out Over My Skies sent me here. Glad he did, you've got yourself a new follower. Thank you for writing this post.

Expand full comment
author

Welcome, Kris! If you relate to everything in my post, then as far as I'm concerned, you're one of my kind. There's this book called, "I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults," which goes through every trait of the DSM definition of autism followed by questions to help you decide if you have each one. Obviously, it's not a diagnosis, but it might help you decide for yourself. I think the most important thing is whether it helps you to think of yourself as autistic. I was really worried that people would judge me negatively, but honestly, people judged me a lot more negatively when they thought I was just a willfully obtuse weirdo.

Expand full comment

I'm a late diagnosed autistic too. Identifying as autistic has really helped me to reframe what I had perceived to be my "character flaws" as autistic traits. My son was diagnosed last year and I've started practicing self advocacy and asking for accommodations and supports. I want him to see that he doesn't have to hide who he is or to be in needless sensory pain. It's always nice to connect with other people who "get it" and the internet has been a brilliant tool for that. Thanks for sharing your story here.

Expand full comment
author

Thank you so much for your comment, Sarah. You're right, the internet is a wonderful tool for discovering like minded people.

Expand full comment

Thanks for writing this. We recently had our son evaluated and diagnosed on the spectrum at age 17. I’m grateful to have this information, but also sad we missed it for so long. He’s been on his own journey of discovering what makes him tick through this new lens, and I appreciate personal essays like yours to help me understand as well (with the caveat that everyone is different).

Expand full comment
author

You're welcome, Jen! I was diagnosed at age 46, and I've often thought about how my life might've been different had I known sooner (and got appropriate support). Good luck to you and your son. I wish you the best.

Expand full comment

All of this is so familiar to me (thank you for sharing. I added this parenthetical after because I realized I moved right into a conversational style as I’m wont to do, and we don’t know each other and I’m just glad to be here) and I self-diagnosed about a decade ago because my therapist just told me I had severe anxiety. As with my queerness, gender and autism...spectrum never felt right. I just feel like a dot on a continuum and I’m excited to interact with other does similar to me and have found that interacting with other autistic folks has made me feel...well...normal. (I also deleted this and rewrote it again and hope that it’s understandable.)

Hi, my name is Wake. It’s nice to read your work.

Expand full comment
author

Nice to meet you, Wake. I totally relate to what you're saying. Until I met other autistic people, I thought a lot of my experiences were specific to me. I'm finally in a realm where I'm considered "normal." I wonder what it'd be like if we all lived in the same town together.

Expand full comment

I was so excited to see your reply! I love the idea of a town of autistic folks!

I ran a community space/art place/shop for 5 years on and off, and the third iteration I made it a space that I felt comfortable in…and it drew mostly queer/neurodivergent folks and outsiders and misfits…and it was magical. I love that we make spaces for ourselves we can signal to other wondrous humans that we are pretty great just the way we are.

(My space was low-light, with gentle music, not too hot or cold, with cozy places to sit, and spaces away to hide plus I would bring in things that I loved and put it on a shelf called curious objects not for sale, so folks had starters for conversations. This has gotten too long for an aside but I’m committed to this being a quiet little comment with no demands or need for engagement unless you want to reply)

Thank you for subscribing to my Substack! It was a gentle an lovely unexpected outcome, and I’m so glad I read your feature on The Editing Spectrum’s Cave of the Heart.

I look forward to reading more of your posts, and making sure the bookstore I work at gets a copy of your book when it is published!

Expand full comment
author

I'd love to go to a place like the one you had!

Thank you for reading my Cave of the Heart piece. There are so many great newsletters on Substack, and I can't possibly read them all, so I don't subscribe often. My criteria is pretty much, "would I like to be friends with this person?" If the answer is yes, then I subscribe.

Expand full comment

I wish you could have seen the space! It definitely helped me and a few others make a core group of community writers, artists and humans who actually and genuinely supported each other through good, bad and sideways situations.

And I feel the same about subscribing to Substack newsletters. Most of the folks I found are either friends, writers whom I appreciate and whose words resonate deeply with me, or people with whom I’d like to be friends.

I was out for lunch with my partner, and my youngest when your comment and writing on Talismans came in and I squeaked in delight, and they looked at me, and I said…I hope I get to be friends with this new writer whom I enjoy. And it took all of my self-regulation not to open the notifications right then and there (I’m trying to actively be more present in my real life relationships and put my phone away until I’m alone).

So I would like to proffer my friendship in the lowest of key ways. I’m a low maintenance friend and happy to read your writing, or email occasionally, or video chat with tea and notebooks open.

If I only make one friend on Substack and it’s you, that would be all the success I was looking for. ☺️ (and if it’s overwhelming to think about, no worries at all. It’s an open invitation ad infinitum. And I always take “no” really well. People being honest with me feels like the hugest honour.)

Expand full comment
author

That's so sweet, Wake. That would be wonderful.

I get overwhelmed easily, so I don't have any notifications on my phone, and my responses can be on the slow side, sometimes. I appreciate your low-key offer, and I'm happy to accept it.

I'd love to meet up sometime over video chat and tea. Maybe in a couple of weeks? I'm taking a class about how to submit to literary journals, right now, and it's taking up almost all of my brain space.

Expand full comment

I am also easily overwhelmed and only offer what I’m capable of these days. Plus your offer of tea and a video chat in a couple weeks is ideal! I’m working on finishing the first draft of my first novel, and I’m hoping to have it finished by then!

I love that this means, with your journal submission course, and my writing my book, we’ll have plenty of fodder for writerly chat and friendship foundationing! (Not a word but I’m using it anyway)

I also love that this forum is ideal for asynchronous communication, and I honestly don’t experience time in a really linear fashion so I’m happy to pop in and out of people’s lives as they have for me. I found out another bonus of my particular strain of autism is that I don’t experience friendship degradation. So once I build a solid foundation built upon clarity, trust and mutual excitements (interests) I’m a friend forever.

Thank you for your response! I’ll set an alarm to check in with you in a couple of weeks. ☺️

Expand full comment

Thank you for your courage, openness, and vulnerability in sharing about yourself. I can relate to some of the stuff you go through due to my chronic conditions, especially with smells and sounds--it's painful and exhausting. Much strength to you.

Expand full comment
author

Thank you. Much strength to you, too.

Expand full comment

Thank you!

Expand full comment

Thank you! I look forward to connecting in a couple of weeks! I hope your course on journal submissions is wonderful and helpful! (No need to reply to this, I shall check in two weeks from today ☺️)

Expand full comment
Comment deleted
Expand full comment
author

I'm glad to know that there are remyelination drugs on the horizon, do you think that'll help you with your symptoms? Given what it says in this article you shared, I wonder if they could help me with my sensory issues, as well?

Do you feel that you were always neurodivergent, even before the MS started? I can't believe people would actually ghost you because of your diagnosis. What jerks!

I saw something somewhere about how a much higher percentage of people with ASD report mystical experiences. I've also had a lot of mystical experiences, too. What do you make of that?

Expand full comment
Comment deleted
Expand full comment
author

You're one of the very few people that I ever thought really "got" me, so it made me wonder if maybe you had ASD, as well.

Expand full comment
author

Thanks for commenting. I don't have time to write a full reply today, but I'll write tomorrow.

Expand full comment