what we have in common


{image is a photo of Brooke and me last March. I am lying face-down on my bedroom floor and she is lying on top of me as she does her homework. When Luau snapped the picture, we happened to be doing the exact same thing with our hands, essentially putting us in precisely the same position. Neither of us could see the other.}

On Monday morning, I linked to an old post on Diary’s Facebook page. The post, I See Myself , explored some of the many challenges that I have come to understand that I share with Brooke.

I talked about my struggles with sensory input. With music that strikes me as discordant or chaotic. With feeling overwhelmed by crowds or at parties (even in my own home).

I talked about eye contact – how it’s always confounded me – how I’ve never really understood how one was supposed to look at two eyes at once – the very mechanics of it feeling unwieldy and unnatural.

And I talked about anxiety. A demon that, by any name, I know far, far too well.

Later that day, I wrote to a friend. I told her more – about my tactile defensiveness in some ways – my huge struggle with tags and seams, and yet my desperate need for tactile satisfaction in others – my love of hugs and snuggles and holding and touching and air and wind and speed and sound and color and FEELING.

I explained to her that I’ve always felt like there was a reason that I GOT so many of the things that Brooke experiences and that I am so often confused by the fact that others DON’T seem to get it at all. I told her about small things that are bigger than they sound – like the palpable relief that I feel when I turn off the running water in a finally full tub – how my entire body releases the tension that I don’t realize it was holding until I exhale into the silence and finally do what I hadn’t done the entire time – breathe – just because the water is no longer running.

I told her that when my bra is too tight or an errant thread is irritating my skin, there is no moment in the entire day that I’m not aware – like AWARE – of it. Not one.

I told her about peaches. About how I can’t even say the word without shuddering because, as much as I love their middle, the idea of eating something with a,dear God. furry skin is, quite literally, more than I can fathom.

I told her more that I’m not comfortable sharing here.

She suggested that perhaps this was part of a whole – part of one or two or three different conditions / diagnoses / labels that she named as worthy of further investigation.

She sent me articles and questions and tons of gloriously useful information (one piece of which was so helpful that I actually broke down in tears.)

But this is what I said.

Years ago, Dr. Dreamy told me and Luau ,”You two inhabit a world that most people don’t. One in which you know a lot more than the average bear. One in which you have the language of pathology at your fingertips, which makes its use tempting, even when it’s simply not the answer.”

I told Luau last night that I firmly believe that I could, with all of this evidence in hand, convince myself that I am indeed on the autism spectrum. I told him that in some ways, I think it would be easier if I were – to rationalize, categorize, and name some of these disparate pieces of who I am – to find a fitting place for them along with every and anything else that has made me feel different throughout my life.

But the truth is, in my heart of hearts, I know that autism is not my answer.

I recognize myself in my daughter. I recognize some of her experiences, perspective, and challenges as my own. I share certain aspects of her personality and a couple of  other of the ingredients that make up the unique and beautiful human being that she is. Anxiety included. (She’s my kid; that’s the way it works – the good, the hard, the whole shebang.)

Because of those commonalities, I am able to extrapolate out from some of my experiences (and combine that extrapolation with my observations of Brooke and the knowledge that I’ve gained from speaking with autistic people) to create a reasonably educated guess about how she feels.

Which, I dare say, makes me a reasonably good mom to her. But it doesn’t make me autistic.

And I need to say that out loud. But not for the reasons you may think.

You see, if I felt that the shoe fit, i would embrace it whole-heartedly. I don’t just talk a good game about taking pride in autistic identity, I believe it. So if I thought it were mine to claim, I’d happily fly that flag as my own along with my daughter’s. And I don’t discount the possibility that I could be on the spectrum simply because I’m verbal or socially adept or empathetic, because, well, read anything I’ve written past 2011 and you’ll know why. (Hint: because none of those things are the sole domain of neurotypicals nor do any of them remotely disqualify one from being autistic.) And I don’t dismiss it on the basis that I’d be appropriating my child’s identity nor because I simply can’t conceptualize sharing her neurology when our experiences are so different. Thanks to friends who represent every corner of the spectrum, I know better than to do so.

I dismiss it because  it simply doesn’t fit.

Sensory issues? Yeah.

Anxiety? Hell yeah.

But the sum of those parts, for me, isn’t autism. It’s sensory issues and anxiety.

(Psst, it does fit for others. Many parents come to long-overdue epiphanies about their own neurology by observing and becoming familiar with their children’s. It’s nothing short of revelatory for them when they begin to understand themselves through their children and find that they, too, are on the spectrum. And it’s wonderful. It’s just not *my* experience.)

And here’s why I feel like I need to say this.

Because I think it’s really, really important to say out loud that you don’t have to be autistic to relate to certain aspects of autism. That you don’t have to share your child’s neurology to find some common ground from which you can extrapolate out in order to empathize with what they are experiencing. That not every aspect of an autistic person is directly attributable to autism.

So while for many folks, finding a path to their own diagnosis through their child’s is life-changing, sometimes, what we might really be discovering is the understanding that while the autistic and neurotypical experiences are undeniably different in myriad ways, we are, at our core, just .. all .. (fake gasp) people.

People who, like all others but particularly children and their parents, have commonalities. People who have shared challenges, even if not to shared degrees. People who have similar personality traits, similar likes and aversions.

People whose greatest commonality is our humanity itself.

The very thing that makes us different, and not.

As for me? I’m just me — complicated, messy, challenged and overwhelmingly blessed.

Just like you.

17 thoughts on “what we have in common

  1. I love everything about this. It’s amazing how many things can suddenly start making sense when we toss our “normal vs. not-normal” binaries out the window. You sound very comfortable, and very Jess. And it makes me exceedingly happy.

  2. Exactly this. I can see so much of me in my oldest daughter, but that doesn’t add up to autism in me, just BAPpy (broad autism phenotype).

  3. I’ve wondered from time to time if I fall somewhere on the spectrum. My whole life I have felt different, never really felt like I fit anywhere, like somehow my world was different than everyone else’s and they just didn’t understand. But I fit in. I had friends. I did well in school. Only as an adult, did I start to realize that I had a sensitivity to certain noises. I can handle a loud concert, but being in a crowd of people – that din of conversation – drives me to madness. Peaches! You said it perfectly. I can’t even look at them. Or any fuzzy fruit. Anxiety in spades. And my husband says I have all of these ridiculous rules about every aspect of life that he totally doesn’t understand. Moreso, he doesn’t understand how breaking any of those rules leads to extreme anxiety. None of this keeps me from functioning. I don’t think anyone has ever looked at me and thought “what is wrong with her”. Well, except my husband. Having two boys on the spectrum has made me wonder…but in my heart, I think there are other explanations. I loved this post. LOVED.

  4. well jess, autism is not the answer for any of us. being ourself is. you sealed the deal with this post you “complicated, messy, challenged and overwhelmingly blessed” you. i would be honored if you would be the first guest on our debut “loud mute radio show”. please check your private email for details. love a person b

  5. I’m totally with you on the peaches. Love nectarines though. And I do see spectrum commonalities with my ASD kiddo. And also commonalities with my NT kiddo. Cause I’m their mom, and it proves they came from me!

  6. Yes!! I am not autistic. But it doesn’t have to be all or nothing. I have traits and characteristics and likes and quirks that fall all along the spectrum, and that’s okay, we can be amazingly complicated people and we can still GET autism even if it isn’t inherently us.

  7. My son’s speech therapist told us as the thought of autism first came up that everyone is on “a” spectrum of some sorts. We all have our quirks and our issues and our oddities. Some are more pronounced or noticables than others. And some make life more difficult than others. And when someone’s spectrum crosses into the autism sprectum (much like light crossing into the visual spectrum), they get a diagnosis and some help to live in the world of those on the other end of the specturm. – but with their own set of issues.

  8. Totally with you on all of this, as usual. Especially the peaches bit 😀 You put it so brilliantly. I think when you can see yourself, the true you, then it makes you more aware and more helpful to others x

  9. I have said to many different people, “We are all a little bit autistic.” It sounds crazy to people who don’t get it, but when they think about it they realize what I’m saying. On some level we all have a little sensory issue (socks, tags, threads…there is a sensory feeling you don’t enjoy), or we have some kind of anxiety or fear. Basically, we have a way to understand, on a very basic level, how these people with autism are feeling. I’m always trying to get people to see it and respect it…even appreciate it.

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