Saturday, January 09, 2021

Express Yourself

I just finished the book, Life at Hamilton, by Mike Anthony. Anthony is the bar tending manager at the Richard Rodgers Theatre in NYC where Hamilton has been for its entire run. The book showcases Anthony’s many interactions with all sorts of different people - from the very, very famous to the everyday people lucky enough to find themselves attending a performance. It’s a great book! Very interesting, heartwarming, and real. Anthony can get a little long winded, and some of his run-on sentences have run-on sentences themselves. But as far as storytelling goes, he does a great job and it’s a really fun read.  

Anyway...

One of his stories tells of his encounter with a truly giddy little girl, maybe 8 years old, who is positively bursting with joy at her finally attending this amazing show. As he’s done with so many other young ones there to see the show, he excitedly asks this bouncing girl at intermission, “Isn’t it the best show you’ve ever seen?!” 

Which stops this girl in her tracks. No more bouncing. The gleaming beam of a smile instantly morphs into a serious look of consideration. She says nothing for several minutes as Anthony pours and serves her family’s beverages, and gathers the desired snacks her family has asked for. Finally, after much thought, the little girl serves up her answer. “Well, I don’t know if it’s the best show I’ve ever seen. But I do know it’s absolutely wonderful.”

I love this story. And I understand this story. And, as soon as that little girl stopped bouncing and started seriously contemplating, I had a guess about this story. About that little girl.

I thought to myself, “that girl is autistic.”

Now, Anthony never confirms this one way or the other. Heck, it probably never even crossed his mind to consider it. He was simply endeared by this thoughtful little girl who wanted to give an honest answer to an off the cuff question. It is a great story. And, honestly, it makes no difference one way or the other what challenges this child may or may not be living with. Maybe she’s completely neurotypical and is just a thoughtful kid. But, for me, and my experience as the mother of someone on the spectrum, I can tell you - her response seemed very familiar. And a sign that she may just very well be on the spectrum herself. 

You see, Sweetie, and oh so many others who find themselves somewhere on the neuro-diversity spectrum, is unfailingly honest. Very truthful. And I can so easily imagine that if Anthony was asking a younger Sweetie if she thought this was the best show ever, she too would have stopped and pondered and given her most honest answer. 

You see, everyone on the spectrum is different, true. But a pretty common trait among many is experiencing a difficulty with understanding expressions, and communication in general. It’s typically at least a little difficult for an autistic brain to translate a hyperbolic phrase “we all” say, into something more real and relatable. It’s very much a learned skill, and for the autistic brain, it takes more practice than for others.

Sweetie is now a young adult. She’s had years of practice with learning and understanding all sorts of sayings and interesting turns of phrasing. So, for instance, if she were now asked a similar question as this little girl about something equally as thrilling as finally partaking in a long-anticipated treat, Sweetie  would understand and successfully translate the hyperbolic nature of the phrase and answer appropriately. Neuro-typically appropriately. As expected by any neuro-typical inquirer. 

But I can definitely remember some instances in her younger days when she wasn’t so great at interpreting common American phrase...

I once asked a young Sweetie - maybe 4 years old, to go straighten up the bathroom sink area, since I was cleaning the house and this seemed a simple way she could try to help me out. Cut to a few minutes later when she called me in to the bathroom to excitedly show me the great job she did... by taking all the things on the bathroom counter and lining them up, end to end, in a straight line. Ah, yep. “Straightened up.” I guess she at least did do what I asked of her. 

Another time when, around the same age, she wanted me to do something for her or play something with her - I don’t exactly remember. But whatever it was, I told her to, “hold your horses.” And so? She went right over to her horse head-on-a-stick riding toy and, of course, held it. Probably also wondering why in the world this was a thing she’d ever be asked to do, and how it was going to get mommy to do the thing she wanted done. 

And then there was the time, same-ish age, when Hubby and I - lazy parents that we were - asked Sweetie to go to the upstairs bathroom and bring down a roll of toilet paper to the downstairs bathroom. She had many questions for us. We could see that she doubted this instruction very much. But we were clear and insistent. Bring the toilet paper that’s upstairs, downstairs. Well, I’m sure you already know where this is going. In just a few minutes, there Sweetie stood at the top of the stairs with her arms full of unraveled toilet paper from the in-use upstairs roll. 

All of these instances we thought were so funny. So cute. So typical, we guessed, of any little kid learning about what different things mean when they’re said. And, really, maybe that’s all it was. Just a typical kid doing typical little kid goofs in their learning to understand how language is used.

But then again, maybe it was a sign of diagnoses yet to come, some 10 or so years later. Especially that lining things up thing. That is something that kids on the spectrum do like to do. And I think I remember her sometimes doing this with her toys as well.

She was also - still is, pretty much - someone who you could not tease.  She always thought she was being negatively picked on. That whomever was doing the teasing (mostly Daddy, Grampy or Papa D), truly believed whatever they were saying and were trying to convince Sweetie to believe it too. And. You know what? It literally just connected for me. As someone on the spectrum, of course she didn’t like this! She takes everything literally. There is no teasing to get, only truth. So when people she knows, loves,  and trusts start telling her things she knows to be one way are, in fact, another way, of course that’s upsetting! Sigh... it’s tough to be a Sweetie sometimes...

And there’s the fact that we had to go ahead and tell her, at 13 years old, that Santa wasn’t as real as she thought he was. At least not in the way she thought he was real. And she was shocked. She trusted us to always tell her the truth. We had always encouraged her belief in Santa, the person. Why in the world should she have ever thought we were lying to her?! That’s just not a concept - lying and deception - that was in her vocabulary. Nothing she would ever do, and nothing she ever expected from others. Especially from her parents - the most trustworthy people in her life. 

I could go on. Hindsight certainly is 20/20. When Sweetie’s PCP asked Hubby and I, about 3 1/2 years ago, if we ever considered Sweetie has High Functioning Autism, (at the same time I was suggesting to her that I thought Sweetie definitely has ADHD - which her doctor agreed with), well, we were pretty taken aback. “Noooooooo....” was my, “I’ve never considered that, ever” response. 

But then? We 3 got to investigating and learning, testing and figuring out that, “Yeah. Huh. Sweetie totally is autistic. No question about it.” Everything we read or otherwise learned about high functioning autism hit the nail on the head. Explanations for the quirky things Sweetie has always done, and her sometimes over-the-top reactions to what neuro-typicals would mostly consider no-big-deal happenings. 

And that whole “literal” thing. As described above, Sweetie - and many, many others on the spectrum - is very, very literal. She says what she means and means what she says (but maybe not - probably not - in the correct tone in which she’s supposed to say it.) She may think she’s kidding about something, but the way it sounds out of her mouth doesn’t always sound jokey at all, but much more serious. But it’s still the case that the words she’s saying are truthful and what she intends to say. She’s still working on the tone thing. Getting better all the time. She’ll get there. It’s just another of those learned skills that don’t come as easily to understand as it does to many others. We, her parents, understand this. And we’re working on helping others to know better to listen to what Sweetie says, not always how she’s saying it. 

So, yeah. I guess that’s it. Not sure if this was the post I meant to get out today. But it’s the post that came. Beginning with that little girl at Hamilton who so honestly considered her answer to a seemingly simple question, rounding the curve to cute and quirky things Sweetie did as a kid, ending with figuring out what’s really going on in that head of hers even now (as best we can, anyway.) It’s a process. It’s definitely a learning curve. It’s something that not all people are going to pick up on - even those who think they, for sure, know Sweetie and would have never guessed that she’s - gasp - autistic! No way!

Way. Sweetie is High Functioning Autistic, and also has ADHD. We see it, she feels it, it’s a fact that she must deal with. And that she does deal with - beautifully. And getting better everyday about how she can fit herself - as is - more comfortably into the neuro-typical world around her. Not changing herself to fit. Just adjusting herself a little - her reactions, her understandings - to more closely align with what the rest of the world is trying to express to her, and vice versa.

You see, it’s like learning a new language. Her native tongue will always be her own. She’s just learning, at the same time, to communicate her own truth, while also understanding the same from others. 

She may not always be doing that the best way possible ever! But she’s doing it honestly, because that’s the only way she knows how to do things. 

And she’s doing a wonderful job. That’s for sure. 

———————-

Posted with Sweetie’s blessing. I’ve been sharing the link to all my posts of late with her, and will continue to do so. I’ve even invited her to my blog in its entirety, now that she’s 18. She says she doesn’t want to read it all. But she has read the recent links I’ve shared with her. For this post, she was a bit concerned with some of my phrasing, thinking my readers wouldn’t be clear about how some stories from her past went down. I assured her they would understand. But, beyond that, she is good with the overall post. 

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