expression is not existence revisited

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Have you seen this?

Scientific American: The Right Incentive Can Erase an Autism Deficit

It’s a little dusty now, but it’s gotten much less press than I’d have expected – or hoped.

The Sally-Anne test has been in desperate need of an overhaul, or at the very least a broadly recognized critical rebuttal for years. While study after study, abundant literature, anecdotal evidence and first-person narratives have refuted its findings for years, the autism Zeitgeist is still based on its faulty and inherently biased (and faulty because they’re inherently biased) conclusions.

Since Ariane Zurcher already did a great job of explaining this, I’m not going to take time reinventing the wheel. This is what she wrote:

Bring up the word autism and you’ll hear a great many theories. Simon Baron-Cohen, the man who I believe has singlehandedly done more damage to the perception of autistics than any other human being (though there are arguably a number of people vying for that title), has a number of theories regarding autism.

His most famous is the “Theory of Mind,” based on the results from the now-famous Sally-Anne test. The Sally-Anne test, where 61 children (20 autistic, 14 Down’s Syndrome and 27 neuro-typical) were shown two dolls, is an example of bad “science.” Sally has a basket in front of her, while Anne has a box. The Sally doll, presumably made to move by an adult, which further complicates the test, puts a marble into her basket and leaves the room. While she is gone, Anne takes the marble from Sally’s basket and places it in the box. When Sally returns, the child is asked, “Where will Sally look for the marble?” Only 20 percent of the autistic children were able to correctly answer the question — Sally will look in her basket.

From the test results Simon Baron-Cohen concluded “that the core problem in autism is the inability to think about other people or one’s own thoughts” according to the blog, holah.co.uk. Except that his test did not take into consideration the challenges many autistic children have in sequencing, language problems, misunderstandings of prepositions, the level of anxiety or stress levels of the autistic participants at the time of testing. Nor did it take into account literal thinking, something many autists have, all of which made the test and the questions asked that much more challenging.

Later in that post she says what is really the crux of this for me …

“Simon Baron-Cohen based his theory, which is taken by many as proven fact, on the assumption that the autistic participants understood the question.”

I would argue that not only have we, as a society (and researchers and doctors and evaluators as an extension thereof), been problematically posing the wrong questions, but that we have dramatically failed to look exhaustively for the answers when they’re presented differently from the way that we expected to find them. I know, that sentence was really awkward. Stay with me.

When my husband drives my car, he often forgets to take the keys out of his pocket and hang them on the key hook by the door. When looking at the empty key hook, I could conclude that he lost the keys, or threw out the keys, or that the keys never existed in the first place, because they are not in the place that I am looking. Or, I might just look somewhere else. Like his pocket.

You still with me?

When we use ‘standardized tests’ to evaluate intellect and examine capacity for perspective taking / empathy and those tests, based on our execution of them, lead us to empty key hooks, what do we do? For the most part, what we’ve collectively done so far has been to conclude that these qualities for which we were seeking evidence did not exist, when what was actually lacking was the evaluators’ ability to take the perspective of those whose neurology varied from the their own. And we all (parents, teachers and society at large) took these bogus conclusions at face value and agreed that the keys didn’t exist. In some cases they may not. But in many, they do.

Time and time again we hear and we see that the manifestation and expression of the human experience is different for those of divergent neurotypes than it is for neurotypicals. It is expressed, well, a-typically. But because we don’t recognize the expression as the same as those manifested in and expressed by our neurotype, we dangerously dismiss the possibility of its very existence.

Expressing an internal emotional response in a different way than one’s peers does not necessarily equate to feeling it differently internally. (That’s not to say that it isn’t experienced differently as well, but one’s outward expression of it is not enough to make that assumption.) Not expressing it at all, or at least not in a way that is recognizable to the majority, does not necessarily mean that it doesn’t exist.

The other day, an article called Autism: After 20 Years He Finds His Way Out of the Silence was making its way around the Internet. Various friends posted it to Facebook and tagged me in their posts. Among them, a fellow autism mom, a few family members and my friend Kate, a fabulous young woman with Asperger’s whom you may remember from HERE.

There was a lot of commentary swirling around the article, but it was Kate’s post that illuminated what, at least in part, had contributed to my lack of comfort with the way in which it had been written. By the time it reached a listserve of local autism parents, I felt compelled to respond. This is what I wrote:

Thank you for sharing the article. While I applaud the reminder to always presume competence, I’d like to share what an autistic friend just wrote in response to the following section of it:

“It goes back to the lack of motivation Ramsay mentioned. For some reason, people with autism don’t receive pleasure from interacting with others.”

This is what she said ..

“Can’t they see how wrong they are? People with autism do not receive pleasure from interacting with others USING THE SAME LANGUAGE THAT NEUROTYPICALS DO. While I can’t speak for anyone but myself and overall general knowledge I’ve acquired, the vast majority on the spectrum WANT to be included and have interactions with others IN THEIR OWN WAY, which requires the other person to do some learning and exploring to figure out what that way is.”

Kate’s words are the fundamental truth of this post. And its implications are huge.

My daughter tends to laugh when people close to her get hurt. If you didn’t know her, you might very well conclude from that isolated fact that she lacks empathy. In fact, you might even think her cold, callous, even cruel upon hearing that she laughs in the face of others’ pain.

But to know her well and to hear the laugh is to understand that it bears not even a remote similarity to the one that she emits when experiencing joy. Instead, it is a visceral pressure release valve. An automated response to far too much input because, contrary to what the old Sally-Anne test might have us believe, she FEELS others’ pain so intensely that she needs a way to process the emotional overload.

But if we don’t take the time to search for context, if we don’t dive beneath the surface to look at WHY her behavior is what it is, we can easily convince ourselves that she is deriving pleasure from someone else’s pain. This conclusion, drawn without context or depth of knowledge or broader understanding of how she experiences the world would be not only useless, but terribly destructive.

That, to my kid, is Sally-Anne. Or a neuropsych’s declaration that because she didn’t yet have the tools for successful social interaction, she must not crave it. Dangerous conclusions based on limited and overtly prejudiced observation.

I know that some will argue that for some autistics Baron Cohen’s findings ring true. I don’t doubt that they do, nor that many of the challenges that those particular people face can be illuminated by his study. So too, I know that there are autistics, just as there are NTs, who prefer solitude to the company of others. The spectrum is vast and varied. But these things simply do not describe nor reflect the experience of my child, nor so many like her for whom the Intense World Theory reads like a well-worn map. I’ll say again, autism is one word, but there is no one autism. Sweeping generalizations based on limited and rigidly imagined observation hurt people.

And they send us looking in the wrong place for the keys.

*

Huge thanks to Ariane for writing the fabulous post from which I so liberally quoted and to Kate, for allowing me to share her thoughts here. But most of all to my beloved Brooke – for teaching me to never, ever stop looking.

18 thoughts on “expression is not existence revisited

  1. Well said, once again, Jess! Thank you for sharing this. And thank you too to Arianne, Kate and Brooke.

    Love you,
    Mom

  2. Yes! I agree that my son wants to interact, just not in the neurotypical ways. We have figured out some of those ways and are able to fully include him. This is a great post!

  3. I do think there is something valid about the concept of theory of mind, however. I notice with my son (Aspergers), he does not understand that just because he knows something or has seen something, that I have not. Now that he’s older, it’s gotten a lot easier to pick up on it and explain to him that I don’t, but when he was younger, it caused a lot of issues.

  4. very well put. i’ll just never be able to understand why the theories of baron-cohen have gained such traction, it’s just been a disaster for the entire issue.

  5. Thank you, Jess, for elaborating on your perspective and your understanding of this topic. I have often longed to hear a more in depth explanation for why you feel the way you do about theory of mind and empathy and creativity. I get it now. it makes sense. You often show examples of how Brooke defies those things, and I am in NO WAY trying to take away from her accomplishments. I am not here to argue with you about your daughter and her experience. Fundamentally, I think it is a language or vocabulary problem. And, perhaps a different understanding of the definitions of the current language. Maybe the new vocabulary needs to grow from the ground up. If the current labels used are offensive or limited, then we need to change that. I need a way to communicate the very real challenges I face daily. I live in a vortex of (using the current terms)
    a lack of empathy, theory of mind, and creativity, with three on the spectrum. I don’t care what you call it: peas, corn, and carrots…doesn’t matter. The experiences are real. I am married to an autistic man, and the experience and expectations of a husband are entirely different from the experience of being the mother of autistic children. I can say this because I am the mother of two autistic daughters as well. I am also the daughter of an autistic mother. (I am also the other labels: grandaughter of, sister of, aunt of, daughter-in-law of). I have been living with autistic family members from the womb. I think that my perspective may not be unique, as I know several other folks in autistic families, but I know that it gives me a very different view from those who only see it from a parent’s eye.
    Let’s look at creativity. A “supposed” lack of creativity. Well, ALL of the autistics in my family are very creative in specific ways. The children have very imaginative play. The adults have talents in music, some with painting and sculpture, some with wood-working, some with crafting airplanes, some restore antique tractors, some with Legos, etc. However, I would have to say that their creativity and imaginations are most effective in their area of interest/obsession. However, most of these individuals lack the ability to be creative in other ways, especially with social and emotional situations. My husband likens himself to Spock, and if the answer is not logical, it isn’t an acceptable answer. But life is full of moments that require spontaneous creativity, especially as parents. Imagine an autistic parent, with extreme reactions to high, piercing sounds, holding a screaming newborn next to his ear…with no ability to find a creative solution. With no ability to empathize with the infant because his own pain and panicked reaction are fully in the forefront. He also feels things very deeply (especially when a loved one is in severe pain), but with no ability to control it, he cannot endure watching it. With no ability to understand how selfish it would be leave the new mother on her own after an emergency c-section, he avoids all the discomfort and leaves. He cannot even imagine the ramifications of these choices. He did what was best for him. He went home, had a good night’s sleep in his own bed, showered at leisure, ate a great breakfast, before coming back. He is not a bad guy. He is not a bad father. He has a genius IQ. Loyal, smart, hard-working, good guy. But, he had had his fill of the medical misery that he could not control, so he returned to the comfort of HIS routine. Because that was what HE needed. It never crossed his mind that he was supposed to put aside his wants and needs and be there for a traumatized wife and daughter. And, yes, we are still married, and yes, I endured being on my own after two more c-sections. I love him. I love who he is. I understand his challenges. However, that does NOT mean I have let him get away with shirking his duties all these years. I give him leeway to deal with things in his own way…sometimes. I have had to lead him through what it means to be a spouse…and what it means to be a parent and father. You might think he has empathy for his daughters. No. Not so much. He cannot understand autism from their perspective. It is all about him and HIS experience/reaction of/to their autism. So, whose needs do I put first? His? The girls? What about my non-autistic son? And, who the heck takes care of me? My job is to run constant interference, trying to keep everyone communicating and interacting in positive ways, protecting the rights of the individuals while also promoting the unity of the family. THAT is why I say that these theories/concepts, no matter how uncomfortable they may be, are very real. So where do we draw the line? Sure, as an autistic, my husband could claim the right to cope with things the way that he needs to. If he were a single guy, he could indulge himself all day long. He did that for a decade before he met me. But he made choices. He chose to marry. He chose to have children. And, just like the author described in his book The Journal of Best Practices, my usband also has a responsibility to work toward being a good husband and father. All autistic children are going to grow up, and some may make similar choices. So, we cannot erase these concepts because we don’t like them. And we cannot always accommodate every autistic person to make every experience easier for them. So, where do we go from here? How do we go about changing the language or the vocabulary or the definitions? I would love to be part of the solution.

    • Lisa,

      Thank YOU so very much for sharing your very rich perspective on this as well. I hope you saw that I took our last conversation about this to heart and included, in a number of places in this post, the disclaimer that this might well be applicable to others, but not to my kid.

      That said, the thing that strikes me most in reading your perceptions of your autistic family members is that you make the point, purposefully or not, that your family members aren’t necessarily “lacking” anything, but have very different versions of (or manifestations and expressions of, to use the language in the post) some of the qualities that autistics have long been thought not to have.

      When you say ..

      “Well, ALL of the autistics in my family are very creative in specific ways. The children have very imaginative play. The adults have talents in music, some with painting and sculpture, some with wood-working, some with crafting airplanes, some restore antique tractors, some with Legos, etc. However, I would have to say that their creativity and imaginations are most effective in their area of interest/obsession. However, most of these individuals lack the ability to be creative in other ways, especially with social and emotional situations.”

      … it’s clear to me that the people in your family are extremely creative in some ways, and not in others. Their creativity is *different* – pronounced in some areas (particularly in their areas of interest) and more lacking in others (the social stuff that tends to be pretty universally challenging), but you show us the innumerable ways in which it does exist.

      Speaking about your husband’s empathy, you say, “With no ability to empathize with the infant because his own pain and panicked reaction are fully in the forefront …” But then go on to say, “He also feels things very deeply (especially when a loved one is in severe pain), but with no ability to control it, he cannot endure watching it.”

      What strikes me there is that if he feels others’ pain so deeply that he can’t endure it, he clearly does have emotional empathy, much like the kind that is similarly overwhelming for Brooke. I’d argue that the fact that his need for self-preservation overrides or eclipses his ability to express his empathy in the way that it would be typically expressed by an NT (by staying at the hospital, for instance), doesn’t negate its existence, it just means that it’s been superseded by another, currently stronger, force.

      Please don’t get me wrong … by no means am I trying to minimize the challenges inherent in living with these differences. I would have been a wreck had my husband left me in the hospital following the birth of my children.

      So …

      The new language. By God, yes, the new language. The one that allows us to talk about empathy not as one broadly defined quality that one either has or doesn’t, but as a nuanced, layered, multi-faceted entity with myriad manifestations.

      The one that allows us to talk about imagination without assuming that we mean the specific methods of symbolic play that we expect to see a five year-old engaged in.

      That allows us to talk about disability and identity and challenges and strengths without assuming that any one of those negates the other.

      Where do we start? I don’t know. Maybe right here. Maybe by deconstructing what we think we see in each other, surrendering our expectation that there exists a universal road map to people who are as diverse as the entirety of the human race, then starting over again. Whatever the answers are, I have faith that we’ll keep stumbling along until we find them — together.

      Hugs (if you’re a hugger),

      Jess

      • Oh, sure! I accept hugs. And, I squeeze you back, and I thank you so much for listening and taking my perspective into consideration.

        I know I am in an unusual position. I long so much to understand how each of my family members sees and experiences the world, and I want others to understand it, too.

        You are right to say that my husband does have very powerful and deep feelings..whoa, I am suddenly having one of those ah-ha moments that almost gives me whip lash. I think I just caught on to what you were trying to say. When it comes to me, I always thought there was some sort of blindness. But, maybe the opposite is true. Maybe it was a hyper-awareness. In reality, he probably feels the deepest with me, to the point of being overwhelmed. I always interpreted his avoidance as a lack of caring, but maybe the exact opposite is true. In a convoluted sort of way, his avoidance of my pain is his way of saying that my pain hurts him the most. And that is an indication of powerful empathy.

        I am sorry I am not expressing this very well. This is complex stuff, but I have some new thoughts to chew on.

        Thanks again, Lisa

      • okay, one more and then i swear i’ll stop (maybe :)). i went looking for this this morning, because, well ..

        “She is not unengaged with her world. She’s seeking refuge from being painfully over-engaged.”

        and

        “I’d argue that a good place to start is recognizing that unresponsive may very well mean overly responsive and overwhelmed and that nonreactive may well mean reacting internally.”

        https://adiaryofamom.wordpress.com/2013/04/30/more/

        xo

      • you’re expressing it perfectly. and yes, it’s extremely complex.

        btw, i love this conversation. 🙂

      • p.s. if you haven’t already, i highly recommend clicking on the intense world theory above 🙂

      • Yes, I did go read about the Intense World Theory, and I found it extraordinary. I had never even heard of it before, but it made all the sense in the world. Why are we not hearing more about this?! Frankly, it explains everything I see in my family. I also think it would explain the strictly SPD folks. I have lots of the sensory issues myself.

        Btw, referring to what we were discussing with my husband…well, it would also apply to my relationship with my mom. You know how you talked about Brooke’s reaction to the very first thing you said in your new car? How that first thing said is the laser-focus, never-forgotten? Hmmm, I am the FIRST born. I was always in my mom’s laser focus. I was her obsession. For instance, my first year of college, she wrote to me everyday, sometimes multiple times a day. There were times I thought I would suffocate.

        O.M.G. I am having one of those whiplash moments again. I swear, this is a life-changing paradigm shift. I finally understand the “why.”
        She loved my brother, but he was never the object of obsession. And, strange as it always seemed, my mom could never say, “I love you, or I am proud of you.” It wounded me deeply. I could infer that she loved me, but I needed the words. I remember confronting her at one point, a VERY angry teenager who thought she would die trying to be *good enough* for praise, demanding to hear the words. And my mom came apart in a million pieces. Of COURSE she loved me. Of course she was proud. How could I not know? She confessed to maintaining rigid control of her emotions …because they were simply “too much.” I remember her saying that she loved me so much that it hurt. And, for some reason, saying the words made her lose control of the emotion. She NEVER cried, but at this moment, she was sobbing.

        I think I feel like throwing up now.

        We didn’t know then. We knew my mom had all kinds of problems. She is almost exactly Temple Grandin’s age. No one would have recognized her issues. She didn’t have a mom like Eustacia. She had an amazing dad, who shared her challenges. They got through it together, but he was killed in an accident when she was fourteen. And she was without a champion. She just suffered in silence all of her life. But everyone knew something was not right. Relatives actually considered taking me away from her, when I was very small….oh dear God. Can you imagine what that would have done to her? Seriously, I feel sick.

        My poor mama. It is making a lot of other things click into place. My children are the only grandchildren. And the day that my oldest was born, she got looped into the first born obsession. Much of the direct focus shifted from me to my daughter. It was
        that daughter’s autism diagnosis that led to my mom realizing, on her own, that she had just found the key to understanding her entire life. And it has freed her in ways that none of us could have ever imagined.

        But, I think you know that my oldest child’s issues have taken a turn down much darker path. And since this has happened, my mom avoids my daughter. (We live 800 miles apart…so it is not obvious to either of them.)
        But I notice. I asked my mom if she wanted to talk to my daughter by phone …and she sounded panicked. It was a little hurtful, and I thought, “Come on, she needs all of us right now. Just talk to her like normal.” But, I did not push the issue. I could hear the unspoken dread. And now, I *get it*. To talk to my daughter would carry my mom dangerously close to the edge of that yawning pit of emotion.

        Sigh.

        Understanding is good. But it doesn’t make it any easier. Just less painful.

      • I don’t know if you’ve read Eustacia Cutler’s book A Thorn In My Pocket, but if you haven’t, I can’t recommend it more highly. I pulled these two quotes from it when I first read it. Perhaps you might find some solace in them.

        “It’s taken me all these years to understand the rigidity, the tension, the temper, the obsession – the traits Dick so despised in his daughter – they were all his own. And who was there to help him in his childhood, long before anyone had coined the word “autism?”

        Now at last I see it. My rage is gone now; sorrow hits, and I ache to forgive.”

        — and —

        “Autism isn’t an exotic disorder, out there somewhere on its own, the fault of mercury or inoculations, waiting to be “cured” if we throw enough money at it. Autism is an exaggeration of what lies in us all. And studying it has been my form of exorcism.”

        *

        This stuff is hard, my friend. It’s messy and thorny and it calls upon us to search ourselves before we can understand others. Go easy on yourself – on your past perceptions and anger and hurt, especially those you felt as a child. For the love of God, how could you have been expected to have waded through this then, when even the adults around you hadn’t yet figured it out?

        Take your time. Breathe. And know that you’re not alone.

      • Yes, I bought Mrs. Cutler’s book when I met her at a conference just this past spring. She read your first quote right at the very end of her presentation. As she read it, and as she confirmed what I already suspected about Temple’s father, a tidal wave of emotion rolled over me. I knew that, for the professionals in the room, it might not resonate. But, for the families in the room, it was enormous. And it broke my heart. Afterward, I made a point of waiting until the crowd was gone. I thanked Mrs. Cutler, for all of us, for blazing the trail, for taking such enormous risks, for defying all the professionals in those early days, for showing us what was possible. And for STILL educating and delivering hope. And then we cried. Together. She told me that her other children are very unhappy with her. They feel the story and the public sharing dishonors their dad. They don’t feel it is the world’s business to know. And I knew then that her personal sacrifice in the name of autism is still on-going. She has become one of my heroes. And you are, too.

  6. Thank you very much for this info, Jess. The Intense World Theory makes so much sense – it actually sounds like the researchers interacted with people with Autism and listened to them. They stepped outside the box of traditional perceptions and thinking and looked beyond what seemed “obvious” in order to find the reality behind the appearance. THANK GOODNESS!

    The idea that people across the Autism spectrum lack empathy as a group is, in a word, ridiculous. I’m not sure if I’m reading into this, but it seems as though there is a common assumption that ALL Neurotypicals have a well developed sense of empathy. THIS assumption is ridiculous. There are levels of empathy across the HUMAN spectrum. Why would this be any different in those with Autism?

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