34 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.

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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!

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I found the following interesting:

https://www.everydayhealth.com/columns/trevis-gleason-life-with-multiple-sclerosis/multiple-sclerosis-and-autism-spectrum-disorder-linked-by-myelin/

Having MS means that I too am neurodivergent. I can relate to the sensory issues. I pay other people to shop for me because of how much certain types of lighting and smells effect me. It doesn’t help things that I experience SLIder (street light interference) phenomenon. I believe it my own faulty wiring (lacking ample insulation around my nerves) that causes lights to flicker in my presence. The flickering lights trigger my trigeminal neuralgia pain and migraines. It is yet another thing that forces my self isolation. I am grateful for having technology that can allow me to stay involved with certain organizations. I shun most social media because it triggers some unhealthy behavior in a great many people, myself included. I sometimes frequent social media outlets devoted specifically to people with multiple sclerosis and their caregivers. There may be sites like that for people with ASD. Unlike other social media outlets, these don’t leave me feeling abandoned by people I still care about but who have seemingly forgotten about me. No one is on those sites to keep up the pretense of having a perfect life. When I was last on Facebook, I found myself unfriending people I was friends with in grad school, because the reminder of all that I have lost was just too painful to bear. Travel is next to impossible because of severe altitude sickness. While I never particularly enjoyed driving, it was still difficult to decide to give it up, but with my hemiplegic migraine, the spasticity in my legs, my cognitive issues, and need to be on muscle relaxants much of the time, I knew that it was no longer safe for me to drive. Over the past few years, I drove so seldom that I was only fueling my car once a year, and it fell into disrepair from not being driven. I am now selling it, yet I still opted to renew my driving license because with the remyelination drugs that are likely to be approved next year, I have hope that I may be able to not only halt further progression, but maybe even restore some of what I have lost.

It can be a relief to finally have a diagnosis, but it can also pose unexpected difficulties. Certain people totally ghosted me when they found out I had MS. I am sure these people don’t want to believe that they are this kind of person, but their actions said otherwise. Yet others were there for me in surprising ways. I think it is good to talk about our experiences and to be open. It’s the best chance we have at furthering understanding. If someone can’t handle what we have to say, that is their problem.

Being neurodivergent has made a lot of things more challenging, but in some ways, I’ve become more resilient. I found that my give a damn on a variety of things has went out the window, and that is rather freeing. For example, I hid my ESP abilities from a lot of people for a long time because I was afraid they would see me as less scientific. When I had to quit work and seek disability benefits, I was focused on getting an accurate diagnosis, so I demanded to see certain specialists, including a neuropsychologist. I’ve taken the types of tests administered by neuropsychologists a few times in my life. When I was in third grade, a teacher referred me to a neuropsychologist because she thought I might be epileptic. When I was hospitalized for depression as a teenager, I took these same tests. In the past, I would deny that I saw spirits because I knew the answers would be flagged. But the last time, I didn’t. How does it help me to deny experiences I’ve had? Is this anymore “out there” than the religious beliefs most people subscribe to? And that is how I responded when the neuropsychology team asked me about my answers. I have since opened up about my experiences to a very scientifically-minded friend (someone I met through a book group) and found out she has had similar experiences.

Anyway, I think that it is good that you are forthcoming about the things you’ve experienced, and I hope that you find the comfort and empathy that you are deserving of.

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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.

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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.

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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.

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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.

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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).

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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.

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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.

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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 ☺️)

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