playing defense

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{image is a photo of Brooke at the amusement park this weekend}

I can’t stand when I hear parents lament the fact that they’re so distraught because their autistic kids hated soccer or ballet or whatever *because they’re autistic*.

What if they just hate soccer or can’t stand ballet? Why does that have to have anything to do with autism?

People are people. We all have preferences.”

– An autistic young woman with whom I spoke a few months ago who probably had no idea how much impact her words had.

Autism mom

A label forged from not mine, but my daughter’s identity

A moniker I have begun to reject

To feel less and less comfortable with over the years

Right up there with warrior mom

I’m not at war

And I didn’t give birth to a bouncing baby autism

I am raising a child

Who is autistic

That identity matters

And autism is undeniably a huge part of our lives

But it is not our life

Any more than it’s hers

We are not an autism family

We are a family

When I say that we’re having a rough time

Those seeking to commiserate reply with, “Autism is hard”

It is sometimes, yes

Sometimes it’s really, really hard

But we have lots of hard in our lives for which autism should not – can not ever – take blame

Hormones

Heartache

Cancer

Money

Marriage

Teen angst

Anxiety

Epilepsy

Fear

None of these is autism

Not one

I used to be so defensive

It was my default posture

“If you are neither autistic nor have a child who is, then you don’t understand,” I’d say

I didn’t see what I was doing to my girl.

I hated, my God I hated when I’d bemoan a challenging time with Brooke and someone would say, “Oh, yes, that’s so typical. All kids go through that.”

No, I’d declare. No, they don’t. Not like my girl is going through it. She is autistic. Nothing she does is or ever can be typical. It’s different. It’s worse. It’s harder than anything that you and your typically developing kids can ever know.

What I was inadvertently saying was, “She’s not experiencing this because she’s a person, she’s experiencing it because she’s autistic and therefore, if your child is not autistic, then you can’t possibly relate their experience to hers or your experience to mine so stop trying, It’s too different for you to understand.”

I didn’t see what I was doing to my girl.

I am sitting with a friend who is on the spectrum. “I am bigger than my autism,” she says. “It is part of me, but it’s not all that I am. It is not the sum total of my identity. I am a person. With or without my autism, I’m still me.”

The world goes silent for a moment as I take in this fundamental truth. It will reverberate for weeks to come.

Embracing and even celebrating identity doesn’t demand nor require allowing it to consume every other part of who we are.

If I were to choose the one part of myself with which I most prominently identify, it would be “Mama.” It is who I am. An intractable part of me. And yet I am also a woman, a wife, a daughter, a sister, an employee, a friend. An imperfect parallel to be sure, but we are more than one thing, no matter how much that one thing informs how we relate to and interact with the world.

Autistic or not, we are all people with preferences, preferences that may or may not have anything to do with our neurology. We have things we like and things we hate and things that we never, ever, ever want to do again. We have feelings and fears and opinions and, no matter how challenging it may be to express them, they are all part of what makes us the unique human beings that we ALL are.

When I hunkered down in my defensive posture, My “You can’t possibly understand this,” stance, I separated my already-separated daughter from others. When I told them that they couldn’t relate to our experience or even extrapolate out from their own to ours, I was also telling them to stop trying. I was inadvertently declaring her autism bigger than her humanity.

I didn’t see what I was doing to my girl.

I have made it my life’s work to understand to whatever degree I am able what it FEELS like to be my daughter. To view the world as she does. To that end, I seek out those who share her neurology, and I can’t imagine where I’d be without their insight. Understanding their experience helps me tremendously as I seek to understand hers. But so too, her experience might be very different from theirs in some very meaningful ways. People are people, autistic or not. Shared neurology is huge, but it does not automatically mean shared everything else.

To understand my daughter’s perspective, I have to turn to my own experiences and dig into my well of human feelings and reactions and joys and fears and likes and dislikes and then extrapolate out using what I observe and what I know and what my autistic friends have taught me. That is how human beings relate to each other. We start from the inside, where we are fundamentally the same, and then work our way out through the differences and back to what we share. It’s the only way we know how to find each other, isn’t it? To relate, to empathize, to understand, to bridge the gaps between us, to STOP DEHUMANIZING THOSE WE THINK WE DON’T UNDERSTAND.

Autistic people are not autism on legs. They are people. People whose brains are wired autistically. They are, as we all are, complex, layered, multi-dimensional human beings who share certain salient and important commonalities and who otherwise run the gamut of humanity in every other conceivable way. As obvious as that should be, I fear that we (in this case “we” being those who love them) lose sight of it sometimes.

My daughter is autistic, yes (and by the grace of God will continue to be proud to be so), but she is and always will be human first.

As obvious as that too should always be, it wasn’t always, was it? When I said, “You can’t understand her experience,” it wasn’t obvious at all.

I didn’t see what I was doing to my girl.

The autistic experience is not the neurotypical one and vice versa. But the human experience .. IS.

We are all human. We have far more in common than not. And that strikes me as a hell of a lot better place to start than, “You just don’t get what we live.”

I didn’t see what I was doing to my girl.

 

Ed note: To learn why I use the identity-first language (ie Autistic) rather than so-called person-first language (ie “has autism”) click HERE.

 

20 thoughts on “playing defense

  1. Again, you continually grow in your insights and understanding. You’re doing a magnificent job. Brooke is growing as well. Please don’t be so hard on yourself for what you were unable to know. Just keep learning and growing. It’s all any of us can do.

    Love you,
    Mom

    • Jess, your mother is wise. I can see where you get it from…

      Jess’ mom, you did a great job of succinctly expressing what was in my mind as I read.

      “Please don’t be so hard on yourself for what you were unable to know.”

      Jess, if you can forgive yourself it will be great encouragement for the rest of us who are coming along a similar path. For, as you say, we are all human…

      Keep shining your wonderful light!!

  2. I am not sure you realize what you are (or were) doing to others, either. A child whom I care for deeply has Downs Syndrome; it would be a slap in the face to be told that I can’t understand her (or therefore really care for her) because I don’t have a child with Downs. With every child I know, I have to learn their particular needs and wants; in Lil’s case, some of those come in a package that says Downs, but others don’t.

  3. lots of good stuff in this one. lots to think about.

    what i’m finding is that if i keep saying “you can’t understand because you don’t live it” all that does is just isolate us (my child, my family) even more but if i allow those near us, friends and family and neighbors to find similarities in our experiences (yes they’re not exactly the same, but there are still similar hopes and heartaches) and that builds connections and hopefully bonds them to my family, to my son

  4. I am trying. I really am.
    My son is diagnosed with autism but most people think he is not, including his teachers who really know autism.
    He is also diagnosed with a mood disorder nos but that isn’t really exactly him either.
    He doesn’t end up with a group to identify with because we don’t really fit in with the autism community. Maybe he is lucky because he is just him. But it is isolating.
    I love Andrew’s talk more than most things I have seen.
    More than anything, he is anxious and has been really, really depressed. He has been since he was 3 and now he is 10. I’m not sure how to embrace that. Mental illness has the ability to take over and most people are just scared of him and it. He looks and speaks so neurotypical that he never catches a break in public and thankfully he has the best school I could have ever asked for in acceptance. Finding an identity when something has stolen your joy is hard. But we will keep trying.
    Thanks for thinking about it and writing about it so often.

    • I share in your isolation. My son isn’t “on the spectrum”, but has so many characteristics of autism/Aspergers that those labels would be much easier for me to help explain him and how he acts to others. He is so anxious and I’m beginning to suspect, depressed, too (though I don’t think he knows what that really is at age 10). It’s so hard to see the joy in all of it, though I know he’s made our family “different” than others, and we enjoy who we are and what we do. I’ll take that as a gift, most days.

  5. dude, jess, there’s just so much in this that i had to sit and think about it for ten or fifteen minutes just to let it all settle in my head. because i want to try and do justice to the incredible degree of nuance in this piece. on the one hand, i finished it knowing that i absolutely agreed with what you were saying here, yet on the other hand, i definitely got tripped up at different parts because the language and images you were using to articulate said point clashed with how my understanding works.

    i generally don’t love “inside vs. outside” or “part of me vs. all of me” dichotomies when it comes to talking about identity and difference. mostly because i find it counterproductive to imagine myself as, like, a box with identity-things inside. in my head being autistic is neither a part of me, or all of me, because neither i, nor “autism,” are objects. similarly, i don’t think of a shared humanity as existing “inside” or “under” more superficial/explicable differences, because neither my humanity nor my differences are objects. i’m trying to think of a way to kind of explain how i understand this stuff, and this is like all i’ve got right now:

    being a person is like making a thing. when you’re making a thing, there are different variables that influence your making: there’s your vision/motivation, there’s the supplies available for you to make the thing out of, and there’s your process/techniques of making. being autistic means that when i’m making a thing, my available materials and my process are different from those that non-autistic people use. so the thing i’m making will turn out very different than the things most non-autistic people are making, and it will get made in a very different way than their things get made. but, at the end of the day, we’re all making a thing, and we each have our own ideals, likes and dislikes that determine the shape of the thing we’re making.

    in your post, the way i understand it, you’re talking about how autistic people get dehumanized when other people see an autistic person making their being-thing, and decide that, because what the autistic person is doing is so different from what they expected, the autistic person must not be actually trying to make a thing at all. the autistic person is assumed to be just aimlessly or nonsensically messing around with whatever they get their hands on, rather than trying to actually, purposefully make something. and then people say, “oh, they don’t make things because their autism means they don’t understand or motivation care about making things.” and when you would say “oh, brooke is so different that you can’t possibly understand” you were also saying “oh, don’t bother trying to figure out what brooke’s making; she’s not capable of making recognizable things.”

    and i’m pretty sure that we’re in agreement that, even though the materials and techniques autistic people use are often very unusual or idiosyncratic, nobody has the right to decide whether or not another person is “intentionally” making an “actual” thing. our shared humanity dictates that being a person means making a thing, no exceptions, no loopholes.

    whoa that was weird and convoluted. but i know you love my early-morning essay-comments. so make of that what you will.

    • I’m going to have to read this at least four more times. And yes, I love your early morning essay making. 🙂

    • That was very well put! I understood it and I understand exactly what you are saying. That was a great way to say what you were saying! 🙂

  6. As always, Jess, an amazing post. Would you mind if I reblogged? This is a topic I have just recently started learning about, and at first it was a bit confusing, but now I get it. (My son was diagnosed in Jan, so I’m still relatively new in this community!)

    Thanks, Jess, for clearing that up,

  7. Jess you are so incredibley smart I love your insite but I see so many parents with children with autism and truthfully most of them
    are so helplessly wandering and just let the child be on their on
    with very little intervention in relating to there own child and some of them are involved every second what works best for
    one may not work for the other but I know one way or the other
    they all love their children and want the best for them they just
    approach it differently and the same for the children they all do things
    differently but first and formost the children are doing it their way
    and that’s how it should be. One friend worries about how other
    people react to her child in public, I tell her not to worry about the
    audience concentrate on what is best for her child and everyone
    else will take what they see with them and it is there objective to
    use it to an advantage or believe the worst and you can’t change
    what other people perceive, and why should you, that is their time to be open minded or believe the worst and that isn’t going
    to change what you have to do only you know what works best
    for your child and do that and let the rest go.

  8. I’ve tried to read the whole article, but the form in which it’s written makes it hard for me to actually process the content. What I *think* you’re saying is that you should not let autism define your child in your mind to the extent that everything else becomes irrelevant or snowed under so you’re closing yourself or your child off from connections with other people. If that’s what you’re saying then I agree. Being autistic is just one aspect of an autistic person’s personal makeup.

    On the other hand, it’s a multifaceted, very fundamental and important aspect. As much as I dislike the word “pervasive”, they do call it that for a reason. Most autistic people I know wouldn’t agree that they would still be themselves if you somehow magically took away the autism.

    Let me make an analogy. When it comes to defining who or what you are, I would consider being autistic as important as something like gender identity – perhaps even more important.

    Just as a thought experiment, imagine waking up in the morning and suddenly finding yourself the opposite gender — never mind anatomy, I’m talking about neurology and personality. Suddenly your brain is a man’s brain rather than a woman’s, or vice versa, and your personality, thoughts and feelings have changed to match. For most people, gender identity is a big deal, and I think most people would *not* think themselves the same person after such a transformation.

    But the autistic neurological makeup can actually be *more* fundamental to a person than gender. While there are proven neurological underpinnings to gender, still some large part of it is socially conditioned. The same cannot be said of autism, because the predominant social environment rejects it. Yet autistics stay autistic, often in spite of deliberate and intensive social conditioning hell-bent on making us not so.

    Many autistic people unfortunately do end up internalizing the ever-present social conditioning that says autism is a “disorder” that “affects” your true personality. And so they often end up hating autism, and thereby, whether they realize it or not, they end up hating themselves. Hence the high suicide rates.

    So no, I would not “still be me” were I not autistic; I do believe I’d be someone else entirely. But that does not mean I’m entirely “defined by my autism” (I hate putting it that way, as if it’s some external thing that could be considered separately from me). Being autistic is obviously not the sum total of anyone, but, because it’s a fundamental component to an autistic person’s neurological and psychological makeup, it’s a factor in *everything* – every thought, every action, every feeling, every expression, every experience.

    I’m a dad, I’m a man, I’m Dutch, I’m a polyglot, I’m a programmer, I’m introverted, I’m 40, I’m so many more things – but all of them, no exception, for better or worse, are coloured by being autistic, and would have been experienced and expressed very differently had I not been.

    Having said all that, though, I still agree we have more in common than not.

    • Martijn,

      What I *think* you’re saying is that you should not let autism define your child in your mind to the extent that everything else becomes irrelevant or snowed under so you’re closing yourself or your child off from connections with other people.

      Yup. 🙂

      My point was not that autism isn’t pervasive, nor that it’s not a HUGE and intrinsic part of her identity, just that it is not her entirety. That she is still a human being with a personality and preferences that, even while colored by / affected by autism in every sense, are not all attributable to it alone.

      Lydia at Autistic Speaks had a great illustration recently. She said,

      “Autism is like the flour in a cake. Once the cake is baked, it is impossible to remove every grain of flour from it, because a chemical reaction has made the flour an integral part of the cake’s existence. In fact, if you could somehow pull out every grain, you would no longer have a cake at all. Take my autism from my body, my mind, my cells, my soul…. And you would not have “me” any longer. Now, there are recipes for flourless cakes, but they require a totally different approach from the start. There are “recipes” for neurotypical people, too, but they must start as NT. Those of us who start life as autistic will always remain cakes that have flour in them. Most behavioral therapies serve only to change the autistic person’s outward appearance, often at the cost of his ability to cope in the world. It is not possible to turn an autistic mind into an NT one, just as it is not possible to take a regular cake and make it a flourless one.”

      http://autisticspeaks.wordpress.com/2014/06/19/buts-and-rebuts/

      The flour (autism) is an integral part of the cake (human being) and without it the cake would be something entirely different. However, the flour is not what makes the cake chocolate or vanilla or have walnuts or chocolate chips or crystalized sugar topping or any other infinite number of modifiers that make it the particular kind of unique, delicious cake that it is, made up of a whole bunch of ingredients … in addition to flour.

      In other words, I couldn’t agree more, I just want to make sure to always remember that my daughter is not just autism. She is an autistic person with a unique personality and preferences and a huge list of traits that makes her her, different … and … just like every other human being out there.

    • I agree with what you are saying, it would be like my ADHD (worse case the specialist has seen in his whole career of 30 plus years) and my emotions disorder and my math disorder, that I would still be me … I disagree, because without these things I would indeed be a very different person. I would not have a short attention span, I would not have unlimited high amounts of energy, I would probably not need my sleeping meds because my brain wouldn’t constantly be going on and on and on. I would be able to control my emotions better and I would probably be much better at math. But all in all, what I am saying that I agree … my world doesn’t always revolve around these things, but in some circumstances they do! I am just saying that I agree with you, because without this things, I would not be me, I would be someone else entirely.!

  9. Being autistic I do find it difficult to explain how my autism colours everything I do, without being everything I am.

    But then I thought of it as being like a room filled with wooden furniture – chairs, table ect. You could paint every piece of furnitute bright red (or whatever colour you prefer).

    Sure you would have a room full of bright red furniture that hits you in the face as being very cheerful and different looking. but that does not stop the chairs from being chairs, or the table from being a table.

    The big difference is that we come already painted autistic red, and can never change that colour, it is a permanent part of who we are. And just as a red chair does not stop being a chair, an autistic person does not stop being a person – no matter how strongly coloured.

    Being different isn’t bad it’s something to be celebrated and accepted.

    • Graham,

      Thank you for the fabulous image of “autistic red.” Love it!

      Just copying this to make sure you see it too, because I found it a very useful metaphor.

      Lydia at Autistic Speaks had a great illustration recently. She said,

      “Autism is like the flour in a cake. Once the cake is baked, it is impossible to remove every grain of flour from it, because a chemical reaction has made the flour an integral part of the cake’s existence. In fact, if you could somehow pull out every grain, you would no longer have a cake at all. Take my autism from my body, my mind, my cells, my soul…. And you would not have “me” any longer. Now, there are recipes for flourless cakes, but they require a totally different approach from the start. There are “recipes” for neurotypical people, too, but they must start as NT. Those of us who start life as autistic will always remain cakes that have flour in them. Most behavioral therapies serve only to change the autistic person’s outward appearance, often at the cost of his ability to cope in the world. It is not possible to turn an autistic mind into an NT one, just as it is not possible to take a regular cake and make it a flourless one.”

      http://autisticspeaks.wordpress.com/2014/06/19/buts-and-rebuts/

      The flour (autism) is an integral part of the cake (human being) and without it the cake would be something entirely different. However, the flour is not what makes the cake chocolate or vanilla or have walnuts or chocolate chips or crystalized sugar topping or any other infinite number of modifiers that make it the particular kind of unique, delicious cake that it is, made up of a whole bunch of ingredients … in addition to flour.

      In other words, I couldn’t agree more, I just want to make sure to always remember that my daughter is not just autism. She is an autistic person with a unique personality and preferences and a huge list of traits that makes her her, different … and … just like every other human being out there.

  10. It’s kinda interesting that even before my diagnosis I was always an Artist. I live and breath art, it is the one thing that gives meaning to my existence. I identify deeply with my Artist persona because it defines me more than anything else – much more so than my Autism!

    So if I’m anything I’m an Artist first, then Autistic, then a male etc.

    Getting a diagnosis simply added to the complexity that is me 🙂

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