99 Comments
author

You are all so lovely. Hitting publish reminded me of John Mulaney’s “I’ve never talked to my dad about that, but I thought I would tell all of you.” I’m like “obviously my close friends and family MUST subscribe to my newsletter so they’ll read this or they do not deserve to possess this information.” But obviously I have talked to my parents about bits of it. You just don’t want to bum people out. Especially when they were GREAT parents and I was doing exceptional amounts of invisible work to not let anyone notice I had clearly been dropped from the moon into the world.

Expand full comment
author

(Also they all read it and were amazing.)

Expand full comment

I relate to this so hard! I am 41 and was just diagnosed with inattentive type adhd last month. 41. I masked that shit so hard throughout my life with my intelligence and desire to please everyone. It wasn't until I had two kids that I really couldn't function anymore and realized there was something else going on besides chronic low grade depression. It's been a great relief and a great mindfuck. Now I'm deciding whether to tell my parents, who were great and will blame themselves for not catching it. I don't really see how they could have though. Thanks for sharing.

Expand full comment
Jan 22, 2020Liked by Nicole Cliffe

Katy, I am in very nearly the exact same boat, only I'm on the other side of 45 with my brand new diagnosis and I'm pretty jealous of your extra half-decade of life with the DX. GOD! What I could have done with 5+ years like the last 9 months.

Yes, exactly -- a relief AND a mindfuck. I got here in part due to a sibling's child getting a dx after 8+ years of eerily-similar-to-my-own-childhood-behavior, so I asked the sibling to complete an evaluation as part of my dx. At this point, most of my siblings know but I still haven't told my parents, mostly for the same reason you mention.

(But maybe also because -- having seen them do the same thing with their grandchild -- I'm 80% sure they'll need to debate/dispute the validity of the diagnosis in order to feel better about themselves as parents. I do think there were a *couple* tells over the years, but nothing they could have spotted, given that era's understanding and level of public education.)

Anyway, thank you for sharing. I feel a little less alone this morning & I'm grateful. (That goes for you too, Nicole <3)

Expand full comment

Katy, I am in very nearly the exact same boat, only I'm on the other side of 45 with my brand new diagnosis and I'm pretty jealous of your extra half-decade of life with the DX. GOD! What I could have done with 5+ years like the last 9 months.

Yes, exactly -- a relief AND a mindfuck. I got here in part due to a sibling's child getting a dx after 8+ years of eerily-similar-to-my-own-childhood-behavior, so I asked the sibling to complete an evaluation as part of my dx. At this point, most of my siblings know but I still haven't told my parents, mostly for the same reason you mention.

(But maybe also because -- having seen them do the same thing with their grandchild -- I'm 80% sure they'll need to debate/dispute the validity of the diagnosis in order to feel better about themselves as parents. I do think there were a *couple* tells over the years, but nothing they could have spotted, given that era's understanding and level of public education.)

Anyway, thank you for sharing. I feel a little less alone this morning & I'm grateful. (That goes for you too, Nicole <3)

Expand full comment

I've been amazed by how many women end up in this position. I still think a couple times a day "maybe I'm being ridiculous and I don't actually have ADHD, maybe I just need to pull it together like a normal person!" Eventually I'll get used to it. Medication seems to be helping as well. Good luck with everything on your end!

Expand full comment
author

I have been saying "I've got a lot of autistic traits" for a while, I've been saying "I'm not precisely neurotypical" for a while, but I think it's probably time to just own it.

Expand full comment

Does the label give you comfort? The ADHD and anxiety labels used to feel helpful to me but lately I feel irritated by it. Not sure why? I think maybe sometimes I feel like, if I am not a textbook case, then I am failing at my own excuse for being myself, as if I needed an excuse to be myself.

Expand full comment
author

it gives me...neutral. it's peaceful.

Expand full comment

Oh, Nicole. I finally had an assessment last year at the age of 53. My clinician said I was "twice exceptional," meaning "autistic of the Aspie type" AND "intellectually gifted."

The phrase "twice exceptional" sounds sooooo precious, except that it is SO useful. "Why can I travel to foreign countries but I can't tie my shoes right?" "Why am I SO good at reading a foreign language but my vocabulary shrinks when I try to speak?" And a thousand other examples. The intersections of higher-than-average ability and disability confounded me my entire life ... until I had the words to put to them.

And yep, material security is an immense help, not that I get the credit for any of it other than not spending it all on, I don't know, books. Thank you for your candor always but especially in that realm.

Expand full comment

I can only speak for myself, but I have loved having you as a part of my internet life. I feel like a learn a little bit about interesting things and a lot a bit about figuring out this whole connection thing. Reading this was a tad revelatory for me—I did not know the term hyperlexia and I was reading books proficiently (though maybe not with comprehension) by the time I was 3. There was never a word for this in my world. Reading has been a singular gift.

Also, you talk about your secret stim of fingertip tapping (mine is toe flexion and tapping in specific patterns, because people can’t see your toes inside your shoes). I struggle so much to figure out how to move around in this world, and so little glimpses where I can say, “Oh hey! I see you. This makes me feel a little bit seen somehow!” Is really nice. I appreciate you!

Expand full comment
author

It's been the same tapping pattern my whole life, and I have done it with my toes too. It's such a relieving little thing to have.

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

Another a finger/toe tapper here! And a picker - cuticles, ingrown hairs, KP bumps. If it can be squeezed, tweezed, or scraped, I'm all over it.

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

ughhhhhh the picking. my cuticles would like a word

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

You know what increases the tapping? KEYBOARDS. Anything I read on the screen, I'm constantly tapping the mouse to highlight and then un-highlight the words in front of me. I'm doing it right now!

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

I read this like a thirsty person drinks. So much of this speaks to me. So much of my childhood was watching other people and mimicking them to figure out How to Act. How to Be. I was (and am) a voracious reader, searching for clues to how people work, how the world works. Storing them away like a squirrel. Trying them out and seeing what happens. It just occurred to me recently that maybe the reason I watch TV with the closed captioning on (and have done so since discovering the feature in the 90's) is that I have some sort of auditory processing problem. Which (aha!) is why I hate talking on the phone (no closed captioning on my phone).

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

not stealing your auditory processing shine but I will never turn off CC again, it's so good for me and I don't even know, or need to know why. the only downside is getting, on occasion, the punchline a couple beats early

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

Even that doesn't really bother me! I enjoy hearing what they do with the delivery sometimes.

Expand full comment
author

ALSO very helpful in horror movies. “Ominous music” in a caption, I know to cover my face w my fingers (slightly spread so I can still see.)

Expand full comment

Same! I love CC. No idea why.

Expand full comment

Oh! And the picking apart my fingers, which is something I can remember doing consistently since I was very small. They are never not a bleeding mess.

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

...I had no idea hyperlexia was an actual thing. I was reading by the time I was two, which many people scoff at, but it's the truth. I do not remember learning how to read *because I just knew how*.

I'm starting to come to grips with some of my more atypical neuro-atypical traits, like hyperlexia, and hyper sensitivity to smells, sounds, and textures. One of my more intense traits is hyper-empathy as well--I always ALWAYS know when something is wrong with someone or a situation, sometimes even before they do, and it is *exhausting*. I can't turn off reading environments and people, and it is exhausting as fuck. I'm trying to learn ways of dealing with this thing in particular, and I haven't found any useful methods as yet, so if anyone has pointers, I am all about that right now.

I am learning to be...okay with these things; to accept them in all their positive and negative ways, and to learn how to use them to be better to myself and to people around me.

Expand full comment
author

Hyper-empathy is so common. My husband has it and cannot watch 75% of MOVIES as a result.

Expand full comment
Jan 22, 2020Liked by Nicole Cliffe

HUH. That explains a lot about the movies/TV shows I enjoy...

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

(Oh, and I picked my face and scalp for most of my life--yay, dermatillomania! :( )

Expand full comment

one more thing (is this oversharing???): the clinician I worked with last year said that aspies are notoriously bad at boundaries. I can't tell you how that has allowed me to take myself off the hook in certain realms.

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

This is just such a remarkable post. I am having many feelings, most of which is just a multi-layered thrilling to your honesty, your self-insight, and the loveliness that comes from feeling honoured to read about your life. I'm not autistic, not even a little bit, but I teach undergrads what it might feel like, at least as best I can. These are words I want to share with them, because it's all about the nuances of living an individual life... and that's something psych students so rarely get.

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

Weird but this was the first email I saw this morning after coming out of the psychologists office hearing my 7 year old had just been diagnosed with autism. Thanks for sharing because it came to me in a time of need.

Expand full comment
author

YMMV, but for us, the dx was a weird day but a million times better than not knowing and now I wish every minute for a time machine so I could go back and say: same kid, more info, it’s gonna be great.

Expand full comment
Jan 22, 2020Liked by Nicole Cliffe

Ours was a different neurodivergence, but 100% this! The psychologist kept asking, "Are you okay?" and my husband & I kept exclaiming, "This is great! Knowing means we can support him better!"

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

Thanks that is how we feel. Our son is a great kid but has been struggling and this info just lets us help him. Family members who we have told act like he just got a terminal diagnosis but hopefully with some education/time they will come to see it as we do.

Expand full comment
author

oh that part is hard. I never want anyone to feel sorry for me every anyway and especially not over this and I only had a few people say “I’m so sorry” and I think I handled it graciously but I recommend (very autistically) making a little script to be like “we’re delighted to have more information about how to help him navigate the world”

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

Thanks that is really helpful.

Expand full comment

So far two people have sent me the autism speaks 100 day toolkit. What do you think of that as a resource? For some reason I have it in my head that they are not the best organization but I can't remember where I heard that or if it is even true.

Expand full comment
author

They are TRASH, I recommend the Autistic Self-Advocacy Network instead. Autism Speaks is just very parent-oriented and very “passing” obsessed and only recently had any actually autistic board members and never show up for health care reform. ASAN, however, is rad.

Expand full comment

Oh wow. I'd never heard the term hyperlexia before and it just...so perfectly describes childhood me. I had delayed speech (chalked up to repeated ear infections causing hearing loss until the tubes went in) but learned to read at 2 and a half. I loved books more than anything as a kid, was (and still am) a speed reader who sometimes missed or forgot parts, and I pretty much always had my nose in a book instead of talking to people and making friends. I think part of why I struggle to control my time on the Internet is that it's an endless supply of free things to read.

My formal diagnosis is sensory processing disorder, which is controversial. Some people think it's part of ASD or ADHD instead of a separate thing, but I was raised in the 90s and I was a good kid who didn't make trouble but also couldn't tie my shoes or balance or stand having even a tag on the back of my shirt because the itching would drive me up a wall. Maybe I should be evaluated more, but for now I just think of myself as "not neurotypical" and that seems to work.

Thank you so much for sharing this, Nicole. You're wonderful and we love you.

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

Just my two cents - I use SPD a lot in practice because that is what people come to me for help with and I only use diagnoses/labels if they will HELP the client conceptualize and get better treatment.

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

thank you for writing this, Nicole; it feels very very familiar and helpful to see, like that comfortable brain-click.

I've been coming near and nearer to owning the label, and then circling away again. Weirdly, my brother and my cousins' childhood diagnoses have made it both easier to understand my brain and harder to embrace the label for me. Calling it "the twirly brain" means I'm not trying to horn in on any attention that should rightfully go to them, maybe? (Mom and I have circled it together too, since she's now using the label pretty often too; we had that probably common conversation that basically comes down to "did you ever think about an assessment for me?" "it was before more research about girls/you masked it well"

thing that has rarely been said: thank god for, the internet and for online fandom on the internet, source of most of my deep non-family relationships over the last 20 years

/end overshare ;)

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

I was diagnosed with "non-verbal learning disorder" as a child, which is considered "pervasive development disorder not otherwise specified" (translation: "well there's SOMETHING wrong with you, but we don't have a specific definition.") Generally when describing my diagnosis to others, I call it "autism lite," because that's more or less what it is. I went through a phase of carrying around a Barbie doll with long hair, because it soothed me to comb it over and over again. I had a necklace pendant that I actually broke because I dragged it back and forth along the chain so much that the clasp wore away. I kept trying to decode whatever secret language my peers were speaking, because I was clearly missing SOMETHING that made perfect sense to all of them, but it never made sense to me.

(It might have been easier had my parents not lied to me for years about my diagnosis because my mother thought it would damage my self-esteem to know about it. Thanks, mom! Struggling in the dark from age eight to age sixteen definitely did only good things for my self-image.)

Adulthood is so much easier because I can now seek out My People who are okay with listening to me talk about my special interest of the week for hours on end. Nerd culture has toxic elements, but it has been a godsend for me: it's a place where it's okay to be obsessive and weird and offbeat. I'm twenty-eight and haven't been in a real romantic relationship yet; maybe I'm just too used to being alone. But I don't feel lonely the way I once did.

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

ahhhhhh someone else has The Necklace Thing *squish*

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

I wore the same headband for about five years straight when I was a kid, and wept unconsolably when my sister accidentally broke it. It *felt good* to wear it and have something that didn't change.

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

I'm pretty sure it was a discussion from your Twitter feed this fall that made me first wonder if I might fall on the spectrum, and the more I've thought about it, the more it fits, for a /lot/ of the same behaviors you've described.

It's been a rocky road for me bc a big part of the process is realizing how my instincts differ from the norm and that obstacles to getting what I want in the way I envisioned might be internally generated and there's nothing I can strictly do about them. I'm working on finding a therapist to help with the "envisioning a new way to getting what I want" part, but it's hard. I can't help feeling like it would be easier if I'd known this part of myself *before* I was an adult.

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

So much of this is so relatable for me....

I'm not autistic, but I'm not 100% neurotypical either. And I too had so much stress and anxiety about not fitting in and failing as a girl. I read parenting books and magazines, because I wanted to know if I was okay and normal.

I think a lot of it was gender-related. I was lousy at being a girl. But also I had stims and sensory overload and didn't understand how to talk to my peers. Thanks so much for sharing and opening this conversation!

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

I think you tweeted about hyperlexia a while ago and I felt :O :O :O because it exactly described how I've always read. I don't have many of the other associated traits but it was eye opening to have an unusual thing about me described so well!

Expand full comment

Same! I didn't know it was an actual thing but now that I do I feel so seen!!

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

Omg ask me how my ability to quote the exact right MPHG scene at the exact right time landed me a husband

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

I WANT TO KNOW

Expand full comment
Jan 21, 2020Liked by Nicole Cliffe

First time I met my now-husband, his (annoying but well-meaning) friends decided they needed to challenge my “nerd cred” by asking me to quote MPHG. I immediately launch into “Old woman! Man! Oh sorry...” because it’s the best. Turns out to be hubs’ favorite scene. Needless to say, his interest was piqued. That was 10.5 years ago. Our children are 3.5 and 7 and they already have Black Knight and Bridge of Death memorized.

Expand full comment