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I'm an autistic writer on Substack, but I won't make any claims about the quality of my writing.

Gosh, I've been pretty down about autism, lately, and I relate so much to everything you said about your daughter. I didn't get to be diagnosed when I was young, and I didn't get to be appreciated for who I was. I'm so grateful that your daughter has you. Thank you so much for posting about her so beautifully.

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Thank you for your comment, Amy. I wonder how things might have been different if u were diagnosed young, to be a bit more seen and understood. Sorry that u have been feeling down. They say being autistic is like playing a video game always set to hard. I hope that you can start coming into into your power. For me, writing has done that. Sending love.

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Thank you so much. Your post today helped, and so does your reply to my comment.

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Hi Amy.

Total stranger chiming in, emphatically cheering you on. Keep writing, keep creating, keep loving that kid inside of you who wasn't seen or understood deeply enough...please!

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Thanks, mark. I'm doing my best.

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This is a great article about neurodiversity in general - but also can I point out how nice it is to read about a parent celebrating their child's autism when that is in no way the norm?! This article makes me happy for your daughter. We need more writing like this about the topic.

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Awesome! Thank you so much!!!!

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Feb 9Liked by Summer Koester

Oh my God Summer thank you for introducing the light that is your daughter! She puts my dancing to shame! And that drawing of the dog just blew me away. There is so much to love about her, your writing, the message in this piece and everything about what is conveyed. Access to higher spiritual realms indeed, what a blessed little girl to have you as her mother, to be truly seen. Chills for days.

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Niki, THANK YOU!!!! 🫶🏻🫶🏻🫶🏻

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every word of this Summer! my now almost 33yr old son was diagnosed when he was 6 with "Aspergers" (a term no longer used). few resources and little understanding back in the day. he would come home from school exhausted from trying to "fit in" and just explode. oof, elementary school was the worse until he found his "tribe" around middle school (band, Boy Scouts, theater-backstage) and "managed" to get through our 19th century education system (ugh.) as a weary mother with my own concerns (and, uh, quirks) plus his sister had "ADD," it was a complicated household. we have had conversations about what wasn't provided, how he "masked," etc to get through. i've apologized for "not being able to see him." now we have the best conversations as his mind is curious and expansive. does he fit into any corporate mold? nope (and yay). he reads and explores and has a sly sense of humor. that the western world is becoming more aware of "neurodivergency" is, well better late than never, but has a long way to go.

oh, and your daughter, a delight. blessed to have you dancing in the cracks with her. and given time, her brother will join in, hopefully. (my son and daughter get along well now, but it was rough when they were younger.)

a Substack you might want to follow: Kate Fox Writer's, Bigger on the Inside

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This is so great. Thanks so much, Anne. It's great to hear from another parent of an "aspie," (another term not much used these days). I agree with so much you say. The world is much more understanding now. And will hopefully be more so in the future. And the masking. Even cognitive therapy has changed from teaching masking to helping the child be more successful in life, while still being true to themselves I guess...? We just started Applied Behavioral Therapy, but haven't gotten to the therapy yet, just observations. So we'll see... interesting how your kids also had a rough go trying to get along as kids. I'm hoping my kids grow closer as they mature. Thank you so much for your comment, and I will be sure to check out Kate Fox! Xo

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Feb 10Liked by Summer Koester

You’re trying to

That’s the best!

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Your daughter is amazing and magical. Her art says more than anything as children’s art often does. Everything in this piece stirs up some deep emotions about how we view, treat, educate, etc. anyone who is a bit different. As a creative and ultra sensitive being I understand the isolation and how one has to “pretend normal” in order to get along in the world. It’s crushing until we come to the conclusion that being different is a wonderful gift for all of humanity.

Imagine if everyone could feel safe in being their creative, quirky selves.

Thank you for sharing your extraordinary experiences.

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Thanks so much, Michelle. Happy to meet a fellow HSP. Some people, like autistic writer Katherine May (and even Glennon Doyle), believe that all highly sensitive people are, in fact, autistic, but I know that's definitely contested. In any case, the world is not made for people like us. It's a rough road when you're a kid, for sure, and sometimes I wonder if I'm just too sensitive for this world even as an adult. The world needs more creative, sensitive types. At least they would do well to listen to us, lol.

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Yes they would!

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Feb 9Liked by Summer Koester

Gorgeous illustrious prose . I like what you said about ‘be yourself,’ and how that isn’t good advice

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Haha, probably the worst advice I've ever given! I mean, be yourself, but beware the fall-out? Whenever I'm myself, I lose friends, lol

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Feb 9Liked by Summer Koester

I got what you meant 💖. I have suffered a lot of pain from being ‘free spirited.’ I guess a lot of people ‘put an act on.’

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💯 it strikes me as grossly performative when ppl say “be yourself!” because I, too, have been ostracized many times over for doing just that

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Feb 11Liked by Summer Koester

Be yourself but in a fake way 😀Lot of people insecure 😞 and have agendas so they get pissed when you might uncover their act ?? Jealous cos you seem more exciting and confident

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Exactly

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Feb 11Liked by Summer Koester

There’s so much in what you said sorry I could only comment on a small part but interested in the comment “Whiteness polices the cracks” - Bayo Akomolafe also very powerful

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Feb 9Liked by Summer Koester

Why they actually get angry is a mystery . #issues

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Feb 11Liked by Summer Koester

"(P.S., can everyone please stop saying “be yourself”? We’ve seen what happens when people actually start being their authentic selves— they end up friendless, doxxed, unemployed, divorced, or in jail.)"

I had to stop reading and belly laugh.

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Haha! 👏 yay!

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Feb 10Liked by Summer Koester

My heart at once hurts for children trying to navigate a world that doesn't understand them or create space for them; and then it fills with hope. These people are world changers and we need them so much right now. I loved this, thank you for sharing such a beautiful tribute to your daughter and so informative - I learned a lot. 🐞

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Awesome, Lisa! Thanks so much for reading and hearing! Xo

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Feb 9Liked by Summer Koester

This is SUCH a wonderful piece, on so many levels that I could spend all day celebrating it, section by section. Also, kid art is the BEST! Soooo incredibly glad we're now on each other's maps. This is how we make the cracks glow. And the cracks are freedom. (P.S. -- I dance in grocery stores! What ELSE are you gonna do with 'em?)

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Haha! of course you do, I should've guessed! "the cracks are freedom." This times a million. Thank you, John Skipp!

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Feb 9Liked by Summer Koester

Thank YOU!, Summer Koester!

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Feb 9Liked by Summer Koester

Love, love, love this essay.

As a former teacher of very young (3 and 4 year old) autistic children, I can so relate to the valued specialness of autistic and other neurodivergent children. They can sometimes be a challenge, but their delights, insights, art and view of the world is priceless. Whenever summer vacation from school rolled around, I missed their daily presence in my life so much.

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Everything you say is true. And yes, sooooooo immensely challenging! Every day! Which is why I had to write this piece, lol. It's my compass, my meditation every time I want to throw my daughter outside into a snowstorm!

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Feb 12Liked by Summer Koester

EVERYTHING about this piece has my soul on fire. What a beautiful prose and delicate delineation of your daughter and everything that makes her magical. Absolutely obsessed. How l learned, related, and also aspire to have this type of philosophical grounding for our children's generation. Beautiful.

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Wow Kiera, that is absolutely beautiful and I am so honored that you would say that !❤️‍🔥❤️‍🔥❤️‍🔥❤️‍🔥❤️‍🔥

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Mar 5Liked by Summer Koester

My autistic daughter just turned 10 this weekend, and she is as differently magical, creative, and beautifully brained as you’ve described your girl. I cried when I read that your kid’s play dates are not always reciprocated. So much emotional labor falls on the mom/parent to bring the autistic child into other kids’ lives. This is SO HARD, and nothing like the free-for-all that was my own semi-neglected GenX childhood, that I sort of imagined my own kid’s childhood would be (minus the semi-neglectful part). I know the playdate culture is hard on everyone, but I think there is an added layer of challenge for moms like us. And we are glad to do it, because our kid needs it, but … sheesh. If I lived anywhere near you I promise I would reciprocate the hell out of some play dates. 🩵🤍💙

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You’re the first person I’ve come across woth a similarly aged autisitc daughter . Oh how inwish we lived closer! The struggle is so real right? Nothing like watching your daughter’s heart break over and over again when friends turn her down for playdates or whatever. Originally i wanted tot title my post “Will someone please love my daughter?” They keep saying “your daughter will meet her people…” question is when? We moms hold so much (or all) of the emotional burden here. I hope it gets easier for you and your daughter, too! 💕

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Mar 6Liked by Summer Koester

I sometimes fear my daughter won’t really meet her tribe till college. Maybe sooner, if she gets into theater or something, where kids with differences are celebrated. The other unacknowledged thing with parenting an autistic kid, I think you kind of implied this actually, is that many of the parents are themselves on the spectrum and/or HSP (I certainly am) and it makes the social advocacy on behalf of your kid twenty times harder and more soul-crushing. And again, we do it anyway, right, but wow. It’s so rough. Anyhoo, just know there’s a mom down in the upper left corner of the lower 48 who sees you and knows the struggle and also knows the incredible magic and joy of our glorious butterfly-soul dancing daughters. (If I could attach video I’d share a vid of my girl’s dance moves plus her badass lyrical compositions.) 🩵

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Also, that’s why I found my home in theater. But then in high school, even the theater kids kind of ostracized me. They were too cool for me I guess. I didn’t learn how to tone myself down enough. I worry about that for my daughter. I can totally see girls hating on her when she’s older.

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Mar 6Liked by Summer Koester

Ugh, god I hope not. But yeah, teenage girls can be really something. I took refuge in the performing arts myself but even there, dang, girls can be mean.

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I love that u found refuge there, too! Hsps are good at performing arts 😘

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Omg girl u are speaking my language! Yes! And it’s so crushing to watch them experience what we also experienced as young ones right? And we’re like I don’t really know how to help you because I still am figuring that out. And we are so sensitive and we feel their pain as if it was our own because it’s still unresolved, and it still is our pain. But yeah, knowing that we moms are in this together that does help. And how did you know I was in the lower 48? Southeast Alaskans often call ourselves that. 😂

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Mar 6Liked by Summer Koester

That’s so funny - I forgot that, but I used to date a Tlingit guy in college and he would always say he was from the lower 48. He was pretty funny, and liked to confuse the hell out of Californians.

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Haha! Awesome

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I'm an autistic adult, almost 40 and I still exist in my own time. I was homeschooled until high school and my parents have always celebrated me for who I am, but I still struggle in life. Which isn't their fault, it's capitalism. https://drdevonprice.substack.com/p/my-disability-is-manufactured-4f4

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Ooh I am going to read this! Because i totally agree with you! So awesome that your parents were able to homeschool you.

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They homeschooled me for personal/religious reasons, but I personally thrived by both being homeschooled at first, and then going to public high school and college later, so it worked out for me (I wasn't diagnosed as a child).

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What a wonderful essay, Summer! Your daughter is a ray of light, she actually perceives and is in sync with the natural world; we should all follow this kind of guidance more. The only problem with autism is society, which makes it a disease, an issue; society which wants us all to be little robots who don't stand out of the crowd and don't ask questions. The ways you describe her makes me see her as a human who listens to her own heart and lives according to her own soul. What can be more beautiful, more right, more fulfilling?

Aren't we all "gifted" and "in our own time and space"? But our gifts and our unique expression has been covered by society's blanket education and expectations.

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Yes ❤️ sometimes i wonder if she’s so far on the spectrum because i give her the freedom to be herself. The autistism didnt show itself until remote learning, after i nature schooled the kids. Had i been raised with such freedom, would i also be more auto-centered, more sensitive, in my own time & space? And how can we be true to ourselves while still getting along with others? That's what were trying to figure out.. :)

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Of course, a child is a product of its surroundings and people who impact her daily.

I've also been called *too* sensitive one too many times, and went from being ashamed and closed off due to it, to being proud of it. I'm not *too* sensitive, I'm sensitive; and that is my greatest power (although it's often painful as well). And yes, navigating interactions with others, often less sensitive, is a tricky one. :)

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It IS your power! I get that, too, and all I can figure is that the ppl calling me too sensitive are super sensitive (usually men) who are triggered by my sensitivity because they have been taught that sensitivity is wrong. (See my last post on how patriarchy hurts men, 😡 )

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Spot on! My father is one who tells me that the most... I did read your last post, sure! 🩷

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Ha! Same. My father & my husband.

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Feb 10Liked by Summer Koester

Love this!!

I’m sure you know Temple Grandin’s work ~ and one of her remarks~ ‘you think a neurotypical person discovered fire?’

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Haha, I didn't know about that quote! I love Temple Grandin! I got to ask her a question over Zoom once, and the question was, "What can neurotypicals learn from people with autism," her response was, "For that answer, go read my book." Good answer, lol!

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I'd love to hear the story of how you managed to connect with the Te Reo Maori language and concepts for autism

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Hi Tim! I think I saw a meme somewhere, with the picture of a child in the background and the words: "The Māori word for autism is takiwatanga, which means in his or her own time and space." So then I did a bit of digging and found out about the recent gift of the mana-enhancing naming of autism that empowers rather than sees it as a deficit. :-)

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Nice, thanks for sharing! I'm from Aotearoa so it's always exciting to see the wisdom of Māori culture spreading outside our shores.

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Wonderful!!! Well, the Māori certainly inspired me! Here's the article about the naming. It's such a beautiful story!

https://gazette.education.govt.nz/articles/takiwatanga-in-your-own-time-and-space/

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thanks for sharing the article--my wife is a trained teacher so was particularly interested to read this

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That's awesome!

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So lovely—both your daughter and this look into your family. I adore the idea that she's louder because she's yelling back at the world. I was like that for a long time. I'm on the spectrum, though I'm so far to one side it doesn't seem relevant until I hear things like that or her use of color. I describe things like tastes and smells by emotions or events. I've had liquor that tasted like Christmas and cookies that tasted like sliding down a plastic slide on the first day of summer when I was so young blonde hair was still soft on my legs and smelled perfume that was unpleasantly purple and pink. But I was just a "little weird". Your daughter is magical indeed. She has so much against her, and yet, she finds the beauty. She IS the beauty. Brava for being the mom who wants to shout her reality to the rooftops and not hide it away in a shoebox under the bed, who wants to let her light shine and not stifle her with shadows.

Also, thanks for sharing my newsletter! <3

The word disabled used to feel bad to say, like I was being mean to myself or condemning myself to a life of sadness. Now I love it. I love being honest about me. I appreciate those who prefer differently abled, of course. Everyone should use the words that feel best to them 1000%.

To me, it's not just that society doesn't allow me to have the space that able-bodied people have, it's also that I hurt and can't do what I used to. My body is slowly crippling me. But I am adjusting to that. I'm carving space with my last spoon and doing what I can to still have the best life. I'm not bothered by the word, only by the reality. But even then, I can smile through it.

And now sometimes, I think I'll take to channeling your daughter and shout back at the loud world.

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I hate that you are in pain and your body is crippling you. But I love how you are alchemizing it into art. You’re an inspiration, Elle. Xo. Thank you!

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That’s so lovely of you to say! I really appreciate it! I think “alchemizing pain into art” is my new slogan (with credit, of course). 🫀

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I don't think I came up with it, though! I probably borrowed from someone else, ha!

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Haha, good to know!

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Feb 10Liked by Summer Koester

"I've had liquor that tasted like Christmas." Yaaaas! The words you conjure to express how you experience the world...Wow. They could be song lyrics...

Thank you.

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Thank you! I wrote my first song with no music last year. It was wonderful! I’d love to write a whole album for someone. If you ever know an artist…🫀

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Look at my posts, then if you like, send me something.

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