Something Rotten
Stuff Poppy Ate

Atypically Awesome

Jason and I binge-watched Atypical on Netflix a few weeks back (and if you haven't checked it out yet, GO NOW DO, it's wonderful). I could probably write a dozen blog posts on all the many, many thoughts and feels I have about this show (which I repeat, is wonderful), but for now I'm going to go off and ramble down a completely different tangent. HOWEVER, the fact that we watched it will be important later.

(Now THAT's how you structure a coherent blog post, folks.)

Back when Noah was officially diagnosed with ADHD, we teamed up with his doctor and therapist to talk Noah through his diagnosis, what it meant and what would happen next. We didn't take the decision to try medication lightly, and I certainly had no intention of just handing him a pill, like here, take this, without thoroughly explaining what it would do and what potential pros and cons we'd need him to self-report going forward. There was a book and several sit-downs and lots and lots of follow-ups and check-ins.

And then his Autism Spectrum Disorder diagnosis happened. In kind of a short order.

And...well, we didn't tell him. 

That sounds horrrrrrrible, I know. But look. the situation's a lot more nuanced than that! It felt like a lot, coming so soon after the ADHD thing. (Which, despite everything we did to keep the discussions cheery and positive, still resulted in a fair share of "what's WRONG with me" and "WHY am I like this" and "I'm going to be a brain scientist when I grow up so I can open my head up and remove all the ADHD from my brain" comments.) We felt leery of slapping yet another label on his still-developing sense of self.  

Plus. without medication or any real, noticeable change going on, it just didn't carry the same urgency...or positive spin of "and now that we know, we know how to fix it." I asked doctors, current and past therapists, teachers and even the actual real-life Asperger Experts (seriously. recognized them at a marketing conference and straight-up scammed as much free advice as I possibly could in a 15 -minute conversation). Should we tell him? And if so, when? And how?

Everybody had the same answer: It depends. 

It depends on the kid, on the level of impact, on their own capability of understanding. Would it help or empower them to know, or would it feed further into a sense that there's something "wrong" with them? Like all things autism, it's not exactly black or white. It's...you know...a spectrum. Badum hiss. 

And so we personally decided to wait to tell him. I don't really know what, exactly, we were waiting for -- maybe he'd ask us the perfect lead-in question? Maybe one day his doctor would simply announce that IT IS NOW TIME. TELL THE CHILD! Maybe a "How To Talk To Your Child About ASD" brochure would randomly arrive on our doorstep, delivered by a small animated woodland creature? 

None of that happened. But then Atypical did. 

(Therrrrrrre it is!)

I don't want to get into spoiler territory, but one scene in particular nagged at me. Sam (who is on the spectrum) is hassled by kids at his high school. Words like "weirdo" and "retard" get tossed around, and he takes it all in fairly passively, and it's clear this isn't a unique experience for him. The show covers a lot of ground in terms of what it's like to be a parent/sibling/friend to someone on the spectrum, the muddy lines between advocating and sheltering and a whole host of other issues, but what I appreciated most is that while Sam might not react socially/verbally to name-calling or casual cruelty the way a "typical" kid might, there is no doubt that the words are penetrating his emotional core just as deeply. You feel for him because the whole myth/misconception that "autistic people don't have feelings" has already been laid bare as a heaping pile of shit. Of course he has feelings. He has all the feelings. He feels everything in the world -- from the sound of a lawnmower to the sting of rejection -- turned up to 11. 

Say something, I thought, while watching that scene.

But then: But what would he even say? What should he say? What are the right words? 

As the credits rolled on the final episode. I turned to Jason and said, "We need to talk to Noah."

And if, like magic, Noah was there. He'd crept out of bed to tell us something SUPER IMPORTANT about his latest video game obsession, like probably a list of all the subtle differences between the Alpha 4 and Beta 3 versions and how he's figured out how to glitch into a closet and get a second crowbar or ahhhhhhhhhhyiyiyiyi okay buddy that's great.

"So Noah," I said. "Have you ever heard the word 'autism' before?"

Jason opened his mouth to interrupt me, because oh, shit, NOW? Really?  Just like that? I knew exactly what he was thinking, because it's exactly what I've spent the last THREE YEARS thinking about: There are books! We should get a book! Maybe all the books! Then we can decide what book or make a list of talking points or get some advice on the Internet or at least wait until his next doctor appointment!

We can't just...start talking about it. Can we?

We did. I'm not sure where the words came from, but there they were. The right words. at the right time, for the right kid. 

He nodded, he asked a few questions, he made some incredibly self-aware connections all on his own to his sensory issues and some other quirks. There's nothing wrong with any of it, or him. It's just different. And being different isn't a bad thing, at all, ever. 

It was a pretty amazing conversation, in the end. 

A week later, we were at the beach. Noah was stressing out about going in the water because a few years ago his skin got chapped from his wet bathing suit and shirt. We'd come armed with a host of solutions (diving/compression trunks under his suit, sunscreen instead of a swim shirt, a variety of ointments and powders back at the house. etc.) but he was struggling to manage his anxiety.

His brothers were, in a well-meaning but not-super-patient way, trying to get him to stop obsessing and chill out about it. They've gotten chapped before, it's not THAT BAD, what's your problem? It's just the beach! It's fun!

"It's different for me," Noah snapped back without missing a beat. "I just feel things differently than you. I feel things more than you."

And there they were. The right words, at the right time, from one perfectly all-right kid. 

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Comments

Joanna Kincaide Moore

<3

All the feels. You are an amazing family!

Springsteenfan

Wowza! Such a great post, and so glad for all of you. You are really fantastic parents, and I am so glad this story had a nice ending--was bracing myself!!!

Jean

It is really hard to talk to your kid about it. We have told our son from a time when he was old enough to understand - and for him it helped connect some issues and give a name to what he was experiencing - for him - empowering. He has tried to use it as an excuse from time to time (which we have completely kabashed) but it has helped him to grow into himself. He has self confidence now - he knows he is unique and he doesn't care. He accepts himself.

Chris

Gosh darn it, tears as usual when it comes to Noah being awesome. I don't have an autistic kiddo close in my life, and I have for years appreciated learning about it from such a balanced and positive source. Thank you. :)

Sue W

I've got all the more feels right now!

Wendy

Did you watch Parenthood? There was an episode where Max (on the spectrum) was SO EXCITED to participate in a walk for Autism, and help the kid with Autism; his parents also struggled with when they should tell him. It's such a great series. I am definitely going to be checking out Atypical. Not a parent of a kid with ASD, but a therapist who has worked with kids with ASD and love working with them. Also, if you haven't watched the documentary, "Life, Animated", do so. Now. It's amazing. I saw it at the Washington West Film Festival in Reston last year, and got to participate in a Q&A afterwards with the family. It was a wonderful experience.

Katie H.

SO SWEET!!! I don't think not telling him was in any way a "mistake" or wrong. We heap so many labels on people nowadays and, like you said, he knows he's different and feels things TURNED ALL THE WAY UP. Seems like a little bit of zen synchronicity happened for all of you. He's just a kid like all the other kids, with quirks and things that make him his own unique self. Go Noah!!!

Karen

Crying at work....gah! I love how closely we experience things. Usually me after you but this time, I am just a few months ahead. I felt pressure from Drew's school and we had a crappy itinerant teacher who showed D his IEP to prove a point about his services. Ugh. Anyway, love the show and love our boys!

Mamabear

Oh my. I wasn't ready for this and yet I needed it so badly. My own Boy is very much like yours. We too got a late diagnosis (at 8!), long after I had grown tired of asking professionals if perhaps he was autistic. And now it makes sense, so much sense.
We just moved and he's in his second school in two weeks. And he's struggling. And people look at me like I'm crazy, like if I just leave he'll be fine. But he won't. Because he feels everything more than those around him. *reworking his IEP as we speak.*

Jamie

Oh, man...aren't you just so fucking proud of him? You should be proud of you too.

Karen

This is wonderful. Autism is an explanation, not a label. I don't know if it's a good corollary because I haven't dealt with the autism spectrum, but for me it's like having a migraine versus a headache. I need that diagnosis to be able to explain how incredibly debilitating a migraine is and why I may spend the day in bed. I'm not a wuss, I just feel it more. It's not who I am, it's something I have to deal with.

Olivia

Love this. Incidentally, have you come across a book called Neurotribes; The Legacy of Autism and the Future of Neurodiversity by Steve Silberman? It's quite an academic look at all things autism. I loved reading it as a teacher, finding it useful to help me understand my students better. I think you'd like.

Shelly A Kroll-Hancock

amazing post! i teared up! I binge watched Atypical in two days. It was so good! XO

liz

Thank you for this post.

Chi

Yay, Noah!! <3 :)

AMC

I love this. My ASD guy is 8. We haven't told him yet. I'm not positive how. He knows his brain works differently than most people. But he doesn't know the "label." I hesitate to tell him, because I don't want him to use it as an excuse. Lots of things are harder for him because of his ASD. But I hate for him to NOT TRY. So, we've waited. Some time we will have the conversation. Sometime it will just be the right time. I'm glad I'm not the only one who has waited. And waited. And waited. For just the right moment.

lauralyzer

My favourite post ever. Thank you.

My daughter has ADHD and we've been told that really, it's all part of the autism spectrum as well. In addition to anxiety, OCD, sensory processing issues, learning disabilities, etc ..... it's all different manifestations of autism. I'm still working on processing that concept myself, and have no idea how to even approach it with daughter. You nailed this - and so did Noah!!

Carin

Try body glide.. you can get it in sports stores. It looks like deodorant and it stops chaffing. We have used it for our son at the beach and it works great.

RzDrms

I love Noah. And you.

Lori

What an amazing kid. Sniff.

Cara

This is perhaps the most hopeful thing I've read all year.

JoAnn

OMG you met Danny Reade? That man has single-handedly done more for our family (along with the whole Aspergers Experts bunch) than most of the therapy and reading could have ever done. So deeply grateful for them and such a fan girl. Our kid is 14 and we are still just sort of mentioning things here and there - loved this post and thank you for it.

Claire

I wrote to you about this on the smackdown well over a year ago now. We got our diagnosis in July. We haven't told him. He's 5. I still don't know the words, or how to. But this made me cry. I hope my son grows to be as well rounded, happy and confident as Noah.

Christine

<3 <3 <3

L

Just love. You all are awesome.

Alice

Made me cry. So awesome that you got to tell him when it worked for you and he so clearly knew what to do with the info.
My husband got his diagnosis as an adult after severe issues with depression and anxiety. I wish he could have told himself that he just feels things more so much sooner and his life would have been easier. (he's okay now)
Thanks for sharing these personal moments and doing it so well.

JenVegas

oh man, you made me cry at work.

Marianne

So.Many.Feelings. Crying at work too! I appreciate how honest and open you've been about your amazing, wonderful, beautiful boys. It makes me, as an "atypical" mom, feel much less alone.

My oldest is 9 1/2 and has been struggling with anxiety nearly his entire life. We tried everything, and I do mean everything. Finally, in June, we put him on medication. Our language was something like "this medication will help you with your worries, so you'll be able to learn, have fun, and do the things you want to do." Even so, the first day he took it, he stayed home from school because he was terrified the medicine would turn him into a different person. He cried; he mourned. It was so so difficult. When I got home from work, he was fine and he understood he'd be okay.

Three months in, he's doing so much better. He's still different, quirky, worried, but now he's able to do some of the things he wanted to do but just couldn't. It's a process.

Erica Hettwer

And, cue the tears. <3

Danielle

I've watched that episode and I felt the same way! I'm so glad Noah has words to use now.

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