no sides from which to choose

spinning-coin[1]

What do you see?

*

[W]e have to examine *illness* and *identity*, understand that observation will usually happen in one domain or the other, and come up with a syncretic mechanics. We need a vocabulary in which the two concepts are not opposites, but compatible aspects of a condition.

*

Neutrality, which appears to lie halfway between shame and rejoicing, is in fact the endgame, reached only when activism becomes unnecessary.

– Both quotes from Far From the Tree by Andrew Solomon

*

I was once asked, “If you have so much trouble with the fact that Autism Speaks uses the words “disease” and “cure” in its marketing materials, what would you have them say instead?”

I thought about it for a moment, and said, “Well, I suppose I’d like them to implore the public to help us find ways to mitigate the disabling aspects of autism while recognizing and celebrating its more positive attributes.”

My questioner cocked his head. “Okay, so how does that read on a sign?”

I’ve never felt more awkward (this is a lie, but go with it) than when I answered, “Celebrate diversity! Mitigate Disability!”

I recognized the folly of my attempt at copy writing long before he said, “Wow, you suck at this.”

He was right. I do.

Because for me, trying to reduce autism awareness / education / advocacy into a soundbite is a farce. Distilling our lives and our mission into five words or less is an exercise in absurdity. This is not the stuff of slogans on billboards – this is messy and sticky and complicated and real. This is humanity.

And this is why I am so attracted to this idea that what we need is an entirely new vocabulary with which to describe it. One that serves not to further entrench ideologies at the poles, but that instead allows for the acknowledgement that the poles — these seemingly contradictory views of autism – indeed of the human condition itself – can not only exist concurrently, but – and this part is where it gets radical – compliment each other.

I have a close friend who is bipolar. For a time, she was very heavily medicated. And while the meds succeeded at keeping her more dangerous sorties into the extremes of her existence in check, she found that some of her more fundamental attributes had disappeared along with them. Her creativity, her yearning for beauty, her unique expressions of joy.

And she asked, as I do now, Isn’t that – the very journey from the highs to the lows, to some degree, the crux of the human experience? Aren’t the highs, or at least a true appreciation of them, dependent upon exposure to the lows? Are we not designed as iron – as imperfect human beings to be forged with the heat of adversity into steel? Are we not compelled to explore the outer reaches of our humanity in order to discover and leverage to our best advantage what lies in the middle?

And what happens when we continue to narrow the band of normalcy by trimming the extremes little by little until we are left with … well, what? A sanitized version of the human experience that some mysterious panel of arbiters deems acceptable? That they believe has just the right ratio of pain to joy? Of recognition of personhood to tolerability by the mainstream? Where does that end? And who sits on that panel? Me? You? Our children?

When talking about all of this, my friend said to me, “Cures are amazing because they are absolute and unforgiving, and by definition they fix what is wrong. But what has always freaked me out about the idea of a CURE for bipolar disorder is that there is no baseline me. Since no one can tease out the disorder from the order that is me, I will just stay with what I’ve got.”

“Since no one can tease out the disorder from the order that is me, I will just stay with what I’ve got,” is poignant and thought-provoking and a beautiful illustration of how disability and identity co-exist, but as a slogan it would really stymie donations to an organization seeking a cure, wouldn’t it? Wouldn’t exactly help the cause on a sign at a fundraising walk for autism, or for bipolar disorder, for that matter. Which is, I would argue, at least in part, why organizations like Autism Speaks, who rely on the public’s largesse for their existence, cling to the disease model of autism. Because fear sells. Ambiguity doesn’t.

It’s why they have to remind us again and again with dark and foreboding rhetoric that THERE IS NO CURE FOR AUTISM even though the vast majority of autistic adults want no such thing for themselves. Because neither “Celebrate Diversity! Mitigate Disability!” nor “I’ll stay with what I’ve got!” raise money. Fear, desperation and pity do.

On the flip side, I’d argue that it’s also why we don’t often hear advocates of the neuro-diversity movement talking about the dark side of self-injury or the violence that can and does so often stem from the constant frustration of not being able to effectively communicate one’s most basic thoughts with those around him. Because it doesn’t fit the narrative of pride and dignity and the right to self-determination that is so vital to share in order to counteract the destructive messages about autism that come at autistics from every other angle. Frankly, it’s the same reason you don’t often hear about those things from me.

But neither life nor advocacy are sustainable at the poles. My friend’s life is not tenable without medication, without the mitigation of the disabling aspects of her condition. But that does not mean that she is willing to abide the cost of a “cure” that leaves her bereft of the parts of that condition that make her who she is.

So what do we do? How do we create this centrist language of which Andrew speaks? How do we forge a paradigm that shows not just one or even both sides of the coin, but which illustrates their simultaneous existence by shining a light on the way that, in reality, the coin forever spins on its axis?

Because that’s it really, isn’t it? Real life, and autism as a part of real life, is neither celebration without pain nor pain without celebration. It is neither the sole responsibility of the world to accommodate difference nor those with differences to accommodate the world. Autism successfully lived is neither identity without acknowledgment of disability nor illness without self-esteem built through pride.

A new paradigm beckons.

One in which heads, tails and everything in between can spin on their delightfully crooked axis and we don’t ever have to choose sides — because there are no sides from which to choose.

Ed note: Please continue on here to learn along with me as I talk about why some of this post was very hurtful to some people I really care about. Thank you. 

28 thoughts on “no sides from which to choose

  1. Having been where your friend is, medicated to the extent where I felt numb instead of feeling, I really get it. It’s a strange push and pull, wanting acceptance for who you really are as opposed to feeling better and “normal.” I’m walking this tightrope with my 4 year old now: embracing his beautiful quirky spirit and shamefully at times, wishing he could fit in better. The latter are the darker times for me.

  2. I struggle with this very concept ALL.THE.TIME. I want to ease the sometimes tremendous difficulties my child faces as a result of his disabilities, certainly. But I often ask myself if he would be the same tenacious, curious, fiercely determined child without those challenges. I think not. And I happen to be extraordinarily proud of the boy he is. As he is.

  3. Can I just say how I honored I am to share space with you, albeit virtual, and to continuously bear witness to *your* journey toward a different paradigm?! It’s truly beautiful Jess!

  4. I am very struck by the line ‘there is no baseline me’ reading this. I suppose that is the crux of the difficulty in many ways. Even if you and I were to present with the same strengths and challenges, for all sorts of reasons we would *feel* very differently about them. And we would both be legitimate in our feelings. There is no baseline vision we are going for here. But, rather one in which people can celebrate difference and mitigate challenge in the ways they see fit for their own individual person, rather than the ways dictated by anyone else.

  5. As the mother of a son with severe autism and a daughter with equally severe bipolar, this really touches a cord deep in me

  6. Comments from Diary’s Facebook page: (periodically updated)

    Comment:

    Incredible. Thank you!

    Comment:

    Wow.Thank you so much for this thought provoking perspective!!

    Comment:

    I often wonder where disorder ends and personality begins – no easy answer and no sound bite for sure – when are you writing a book ?

    Comment:

    Jess – I adore you. Both professionally, where I have known you since my son was diagnosed, and personally, where I feel very blessed to know you a teeny bit. And there is nothing in my fabric that wishes to either challenge or debate you. I agree. I get it.
    But I will suggest to you that our children, when they are in the struggle of seeking education and services from this fatally flawed public school system, have gained and continue to need the “disease” and “cure” vocabulary, especially those high functioning children whose disability is (absurdly) invisible to an IEP team. These labels are the only thing standing between the millions of children in need of services, at least in my experience, and ZERO supports. If not for the fact that I can hammer on a conference room table “my child is disabled!!!” (with the same force and fervor Shirley Maclane did for a dying Debra Winger) I’d literally get absolutely nothing. I no longer support Autism Speaks, and as you know have dreams of a nonprofit that will put actual dollars into the hands of actual families. But in my case and the case of many others, while I acknowledge what you say with a knowing wink and an understanding nod … at this juncture, I need the world to see my child through the lens of sickness and disease in order to get him the help and attention he needs. When he is older (and Jess is older) and can understand more about himself and the world, I’m sure I will revisit this post with a rousing “Hell-to-the-yeah!” But for now, that’s the world I live in. Much love to you, and appreciation for your amazing brain. XO

    My reply:

    @michele, I’d implore you to re-read my post. My point, my whole point, is that BOTH the illness / disability model AND the pride / identity model are valid and necessary and not only co-exist but compliment each other when truly integrated into our thinking. By absolutely no means do I wish to erase either, but instead to help create a paradigm in which both are recognized as valid. Please note the quote at the top of the post – neutrality is only viable once activism is unnecessary. We are nowhere near that point.

    Comment:

    Amen!

    Comment:

    a lot to think about and very well written. I relate with your friend as I am also bi polar and I am always striving for balance between mania and depression, the middle ground. I also could not live with this if it were not for my meds. I get violent at times. How this relates to autism is interesting also. We need a new understanding by the masses of just what autism is and I agree it is many things that can not be summed up in a 5 word sentence used to bring in money. People need to know that there is no cure for autism and that it is not a contagous disease. People need more compassion altogether and most important to me is to teach this to their children.

    Comment:

    I sometimes wonder if the autism umbrella is too big. I have one boy that makes me completely understand your post and another younger one that makes me disagree. My older boy is similar to your girl, talking and sharing his beautiful view of the world. My younger is nonverbal trapped in his own mind and at times a danger to himself and others. He is happy but not able to understand biting yourself or others wrong. I watch him hurt himself and he smiles about it. I see him and see a child afflicted with a disease. My older one I see a child given a difficult gift to manage.

    My reply:

    @chelsea, I’d ask you to really look at the post again. I am not denying the need to address the often severely disabling aspects of autism. At all.

    Comment:

    Such a thoughtful post. Thank you!

    Comment:

    Im right there with you on this, Jess. I see Autism as coming with both gifts and challenges, and I prefer tge term ” disability” to refer to the challenge portion if what my daughter faces, especially in light of the need for services and accomodation, but “disease” and “cure” are two words that are never on my lips and I find offensive (and dont get me started on “epidemic”!!)
    I dont know if your kids watch The Berenstein Bears, but theres a line in their theme song that I feel so aptly applied to my beautiful daughter: “theyre a lot like people, only more so”. In the context of the cartoon its supposed to be funny, but with Autism I feel like we all, as humans, have gifts and challenged, but for my baby girl, its “even more so”. 🙂

    Comment:

    I love my boy (my only child) who is on the spectrum with all my heart, but i live in fear for his future – when he’s not a cute little boy with big dimples. I agree that we need non profit organizations that will help support children and families throughout their lives NOW – the idea of looking for a ‘cure’ is just so many light years away from where we are now in terms of the science that it should not be the focus of millions of dollars of research just now when we are struggling to provide what our kids/adults need now. We are just not able to meet their needs and this wave of kids diagnosed now are going to grow up.

    Cure also implies disease and we don’t even know that yet – Many children on the spectrum is that they may grow in to adults who continue to need support to live in our world (rather than be shuffling around over-medicated and away from society) – especially when their parents aren’t around anymore to advocate, support and pay for services….

    My reply:

    And @chelsea, I COMPLETELY agree that the autism spectrum is far too broad as a catch all diagnosis. I’ve been saying for years that autism is one word but there is no one autism!

    Reply to reply:

    I see your point and appreciate its passion. I am just pointing out I feel asd is too big a umbrella. I really feel the medical profession put the unknown in one group. One side seems so different from another. Think more diagnoses are needed. Maybe that is not popular opinion but autism is too many types in my view with 2 so different boys.

    Reply to reply to reply:

    Lol. I commented before your next response came up on my phone. We were in agreement simultaneously.

    Reply x 4:

    @chelsea, I couldn’t agree more. I’ve written extensively about it – calling the shared diagnosis among people with VASTLY different experiences nothing short of a farce. I think the removal of asperger’s in the DSM-V was a huge step in the wrong direction.

    Reply x I’ve lost count:

    I so feel for everyone who has said things. My boys make me see things so many different ways now. I want a cure but I do not want one. I love the differences in my boy and hate the pain. I am thankful to have this to share and read this morning. Now must go off to doctor with one of my boys. This was helpful as I try to explain to new doctor my boy this conversation helped. Thank you for this.

    New Comment:

    My daughter is on the more severe end of the spectrum. I have to say that I do feel desperate for a cure.

    Comment:

    Great post!
    I feel stuck in the middle of both worlds- TACA and other groups have helped me tremendously work to heal my sons health problems which has helped him feel better. At the same time I love and accept him and am not looking to “cure” him but darn right I want him to feel better, be as functional as possible in the world and not be continuously trying to run away. My Facebook feed is very contradictory- The Autcast followed by Jenny McCarthy, etc. It should make me chuckle but it just makes me depressed.

    Comment:

    Although I consider myself a somewhat intelligent person, the substance of the tome you are reading seems beyond my ken. So much of what I know or think about autism is learned from people around me such as yourself, Jess. I have read and read but find that one on one, parent to grandparent, teaches me so much more. Truth be told, I feel lost. My grandbaby is changing and not always for the better and I feel helpless.

    Comment:

    Yes. Yes. Yes. We struggle as individuals, as parents, as communities to create a world with room for all of us.

  7. So glad to have found your blog and to have read your thoughts in this post today. My sweet son was diagnosed with Autism just a few weeks ago and I am still absorbing and processing. The thing that I keep coming back to and have written about myself is that he is still the same incredible kid he was before the word autism entered our lives. Some of the most incredible things about him are the Autistic things. There are challenges but I LOVE who he is. My other son has ADHD and I struggle with the medication he takes and the effort to keep it from “numbing” who he is for the sake of the concentration and focus he “needs” to get through a school day. Your words have truly resonated to me and I want to shout “yeah! what she said!” Thank you!

  8. Thanks for this post and for leading me to Andrew Solomon’s Tedtalk. I have the book on request at my library and look forward to reading more. I also feel like this journey with my daughter has led us to this point. My daughter lives her life with such joy and I cannot imagine her without that. But at the same time, I would love to take away some of the most difficult challenges. I feel like PushMi Pullyu in the Dr. Doolittle books.

  9. Hi Jess,

    I’m one of your many diary readers. My son, 21, has Asperger’s syndrome, and I find your insights to be very helpful.

    In regards to “what do we say” about autism, from the time my son was born (with some physical issues as well), I’ve known that he has a huge potential, just like “normal” kids, but that he just happens to have an obstacle course as part of his path. I have to help him through that course, and, as he matures, teach him to find his own way over the obstacles that are still ahead.

    Same race, same goal, different path ☺

    Thanks for your writings – they’ve made a difference for me and my family!

  10. Great post.
    I would like to venture, though, that maybe a significant part of the reason self-advocates are reluctant to talk about self-injurious behaviours is because they’re a very personal subject. There’s already so much time spent waving around a diagnosis just to be allowed to participate in the conversation, detailing personal experiences with an implicit aspect of the disorder seems unnecessarily invasive. Even more so when supporting communication in whatever way is most individually suitable (and so reducing frustration and destructive coping mechanisms) is an essential part of advocacy for self-determination. I’m certainly not suggesting that it’s always the case or the whole story, but I do think might be something worth keeping in mind.
    Always wonderful to read your blog.

    • thank you so much for your thoughts. i’ll start by saying that i agree, cause that’s always a good start. 🙂 on a sort of but not really random note, it’s funny to me that you referred to what i called ‘advocates of the neurodiversity movement’ as ‘self-advocates’. while it’s certainly true that most self-advocates, certainly all that i know, are proponents of that ideology, advocacy in this realm is certainly not limited to them alone as they are joined by a whole lot of allies. i bring this up in part because in the original draft of the post, i wrote ‘self-advocates’ but then later revised it to reflect the broader movement. i think it matters for the sake of this conversation, because, in my experience, it’s not just self-advocates who tend to be hesitant to divulge the grittier, more personal aspects of their lives, but, in my experience, parents and caregivers who describe themselves as ND proponents largely share this hesitation as well.

      i think (and i’m speaking for myself only and mixing in long-time observation) that a lot of it comes down to the co-mingling of autism with personality / humanity / identity / individuality / personhood in the ND movement vs. the clear separation of it from all of those other things in the disease model.

      as far as parents — those of us who see autism as an integral part of our kiddos are far less likely to belabor the more painful or personal parts of the disorder because we assume that, as you say, these topics feel invasive for our kids and because of that, discussing them feels like a betrayal of privacy. i would think, and this has held true in what I’ve seen in places that parents gather to talk about healing their injured children, for someone who believes that autism is totally distinct from the person whom it inhabits, it’s easier to talk about anything that one thinks they can attribute to it, no matter how revealing it may be on a personal level because they’re talking about something that afflicts their child, not something that is a part of their child. now, to be clear, i’m speaking only of my take on the extremes and analyzing the why, not judging the what, so please, folks in the middle, save the hate mail.

      i also think that we have to acknowledge that many parents whose children are in really dire straits, who have yet to find a means through which their kids can effectively communicate and who are really suffering as a result, share these kinds of intimate details in a desperate plea for understanding, help and resources.

      Anyway, I’m officially going in circles. I’ll just go back to thank you and ‘I agree.’ 

  11. I find what you’re saying about autism inspiring. But as the child of a bipolar man who went undiagnosed and then periodically unmedicated throughout his life? I guess in the end it was about his choice to be whoever he wanted to be, but the repercussions on me and my sister (and my mother, and his second wife, and his second set of kids, and the girlfriends who came after THEM) were painful and horrible. There’s a huge difference between flapping because that’s what you do to show joy, and borrowing/stealing money from family members because that’s what you do when you’re manic and unmedicated.

    If you, as an individual, want to make choices about what your identity is and how medication affects that, I just think you ought to make sure you’re not destroying other individuals as you do it. The bipolar disorder I’ve known, when left unchecked, takes many people down with it. I would still fight for a person’s right to make that choice, because I believe that much in ‘choice’ as an overall concept, but…I guess I’m just saying that I think there’s a huge difference between bipolar disorder and autism. At least in my, individual, experience.

    • Oh gosh, this is hard stuff. For the record, I wasn’t equating BPD with autism except as differences from the normative experience.

      I just thought that my friend’s take on her condition was wonderfully illustrative of the (identity vs illness) vs the (illness as identity) paradigms and as a metaphor for the extremes of experience along the human spectrum. As I said in the post, my friend does not live without medication. For her, that’s not tenable. But she wants the right to find a balance between mitigating the disabling challenges of BPD and still feeling like who she is.

      But you’re absolutely right that there have to be limits on choice when they do damage. Though I haven’t read beyond Andrew’s introduction yet, I know that one of the differences he addresses in the book is criminality. Criminal behavior is not a choice that we abide, nor one we should. There are absolutely limits on our choices once they begin to infringe on / hurt others.

      Above all, I’m so sorry for the pain. I just am.

      • Thanks, Jess. And I know you weren’t advocating for throwing all the meds in the sea; that was, in fact, your whole point, that there’s a middle ground. And god, those meds can be awful. There are no easy answers, and DEFinitely no one-size-fits-all ones, much as I’d often like that to be the case! It’s all about diversity, right?

        Anyway, I appreciate your response. A lot. Mine was a comment that I probably should have held onto for a couple of hours and considered the need for rationally, rather than responding without taking deep breaths to an inadvertent jab to a sore place that I keep thinking should have healed by now.

  12. I’m glad I have your hand to hold while on this journey. In making sense of different paths we all travel and how we all want the same thing for our children. Thank you.

  13. I’m a father (a likely aspie myself) of a diagnosed autistic 5 yr old boy, and his main caregiver. I’m against cure type language. I see vast strengths in being neuroatypical, along with challenges and even pain (my son seems to experience loud noise as pain).

    Yes, we need new short phrases that convey pride and acceptance of autism, while also saying here are this person’s challenges, let’s try to set them up for success rather than failure.

    I think plain old average people are up to the task if we present something coherent and actionable. Autistics are yet another chapter in the human condition. People who have seen any of life, either on the streets or reading great literature, are going to “get” a message of I’m Strong/I’m Equal/I Need Help Routing Around This Helluva Problem….because its the story of most of humanity.

    I say this knowing the giant difficulties I’ve had, rough years being bullied, and my son’s daily challenges…I still believe we could make this new paradigm of language for autism acceptance and understanding.

    I leave off with a little phrase I made up last week:
    A.U.T.I.S.M. = Advanced Unfiltered Totally Intelligent Sane Mind

    -Lance Miller

  14. Thank you for your deep thoughts. I found your blog recently and have started reading from 2008 onward – I’m in early 2009, but I read this post last night. I struggle a little with this as well. I’ve been very lucky, as my son has only been “lightly brushed” by Autism. He is very verbal and very functional academically (he’s going into first grade), but socially he is awkward with his peers. I worry. I feel lucky because he is “high functioning”, but he faces some big challenges because our world is a SOCIAL world and he just doesn’t have all the tools built in.

    I came across a website that was kind of scary in it’s anti-causation and cure attitude and it freaked me out a bit. Because while I too agree that you can’t separate the “baseline from him”, I DO want to understand what Autism is in all its aspects so I can learn from what’s going on and find more tools for my son. I DO accept him and love him tremendously for who he is, but I will not settle for less than helping him find as many tools as possible to function in the world as best he can. The world can bend a bit for him, but the world doesn’t bend much for anyone. People won’t accept him for who he is the same way I do. They just won’t because they aren’t his mom.

    The more I understand, the more I can help the world understand, and help my son understand so they can work well together. I appreciate your help in understanding too. 🙂

  15. Jess, I shared some of the above with my daughter who is away at college. Sarah happens to be one of her brother’s biggest advocates. After reading some of the above she immediately sent me a quick comment about the “cure” part : “Exactly! I wrote in my college essay that finding a “cure” for autism would be like finding a cure for kindness or a sense of humor.” Soooooo, how come my 18 year old college freshman get’s it and so many “experts” don’t??.

    p.s. Jess, I think you are awesome…..you continue to express in writing the frustrated, jumbled up rantings that go on in my head – and for this I thank you!

    Michelle

  16. Pingback: Building the Ship Of Theseus | Dmitry Laughs

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