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A friend sent me Virginia Breen’s TEDMED talk recently but I could not finish watching. I walked out of the room with my throat tight with — anger? Jealousy? Passionate admiration? But my torrent of feelings weren’t aimed at Virginia, or her profoundly autistic daughter Elizabeth — they and their story were wonderful, warm, engaging, moving. What bothered me was that after learning that Elizabeth could type and measured “Genius” in the IQ test, her school “took a greater interest in her.”

So did the TED people, apparently. Again, totally understandable. And yet I found myself wondering if people would be as interested in Elizabeth’s story if she turned out to be as low-scoring on the IQ as she had first appeared. I’m pretty sure they would not be. Because by and large TED seems to be about human achievement that rocks our world, and so probably a garden-variety autism story of someone who merely rocks in their world would not do it.

I sound petty and jealous. It’s true, those ugly emotions are mixed in there, and I don’t want to feel that way, because I also felt rapt and moved to tears by Elizabeth and her mom. Elizabeth’s first typed word was “agony,” and her first sentence was “I need to talk,” at age 6. Before and since, she would storm and tantrum and hit herself and rock, like so many people on the autism spectrum. So Elizabeth looks far more “lower functioning” than she actually is (because her typed sentences and poems and high IQ score show this). One of her most compelling responses to the question, “How did you learn all this?” was “I am listening.”

I am listening. Elizabeth’s sentence blew me away. This what so many autism parents like me believe about our own children, but forget. We forget it every single day, because we see so little of the evidence we need.

I’ll admit to it. I often talk about my son Nat — who is 23 and has fairly severe autism — in front of him like he can’t hear. I make decisions for him all the time, from guardianship-type of issues to what color green to use for his bedroom. We all make big efforts to include him in his own life but it is not possible to do so as often as we should because we just cannot get reliable answers from him.

Nat has certain default responses, Nat does know how to type and his sentences are very small and basic. He takes perhaps three times as long to remember what to type after, “Hi, how are __?” When we type together, I watch him, whispering softly to himself, thinking his own thoughts, perhaps collecting them so that he can finish his sentence. I watch and I wait. I do not want to prompt him, cue him, fill-in his blanks. I want his thoughts to be all his. I want him to have that, at least, in a world where he gets to decide so little about his own life.

I am listening. Elizabeth’s sentence blew me away. This what so many autism parents like me believe about our own children, but forget. We forget it every single day, because we see so little of the evidence we need.

So there it is. Nat has so little to say about what happens to him because he did not make the leap that Elizabeth made. That same stuff that Virginia learned was inside Elizabeth might very well be inside Nat, but so far it is buried under a sandstorm in his head. I imagine the wind beating his perception, coating it with sand and debris, and that only once in a while can he find a space to see through, breathe, and express himself. When we type together — on Facebook every weekend when he is home for a visit — we sit in breath-holding silence for long minutes at a time, waiting for the word to be born.

Most of the time Nat’s sentences are not profound, but they do pretty much say it all. When he came back from seeing “Life of Pi,” with his social group, my husband asked him, “What was the movie about?” Nat quickly responded, “Tiger.” This accurate assessment of the film gave us something to smile about for months.

Nat’s all there but it is tough for others to remember. It’s even tougher for others to care. We are such a fast-moving people, a terse nation of texters and Tweeters, looking for the next new meme. How can any of us slow down enough to wait for people like Nat? When I think about it, and let my jealousy evaporate, I wonder if Elizabeth may be the answer after all. Because perhaps it is through the typed words of Elizabeth, that the world will eventually learn that Nat is someone to invest in; that Nat is listening, too.

Tags: Family

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  • http://www.facebook.com/bkort Barry Kort

    If someone is listening, and can barely respond with yes or no, there is still a way to construct a meaningful dialogue with them.

    Here is one possible template to work from.

  • http://www.facebook.com/susan.gorman.507 Susan Gorman

    Beautiful and informative. We need to not only listen to the autistic, but to do better listening to each other, don’t we?

  • MickeyLong

    What a Class Act! Both Mom and Elizabeth.

  • Alice

    I understand the jealousy, and I struggle with it a lot. When I got an communication app for the IPad, I secretly hoped the twins would reveal their inner feelings and complicated thoughts. They used it to show that they really like to buy donuts, watch YouTube, and blow bubbles. On the other hand, I hope this means they are not in agony, and are fairly happy with their lives as they are. They seem happy and maybe it’s okay to be the way they are, as opposed to “locked in”.

  • guest

    Thanks Susan, this was inspiring to read. I work with teens, and recently attended a conference where teens in a leadership program where available to “chat” with us on a google hangout. My question to the teens was “what is the most meaningful or best volunteer or service work you have done?” One of the girls said “helping a kid with a learning disability learn multiplication tables…it took a year but it felt so good to see the process and his success.” She went on to say she is now in college studying to become a special needs teacher. I was happy to hear her story and how working with just one person was meaningful to her.

  • http://www.facebook.com/profile.php?id=100000032192292 Helen Downing

    Listening! We all need to do a better job at it. It isn’t all about us! We need to listen for the sadness and pain in so many persons lives. Too often, we miss those crucial signs of the abused, the depressed, the suicidal. The more we can learn about autism, the more we can do to help those who are forced to live inside themselves.

    • acerplatanoides

      I agree. The quicker we rush to judge, the less we can listen. Slowing oneself down is the only way to have the time that it takes to truly listen.

  • jana

    Thank you for writing this. You speak for many.

  • http://www.facebook.com/profile.php?id=100000072313822 Janet Kightlinger Bowser

    Charlie can speak, but I just know there is so much more inside himself that he can not get out.

    When I think about autism, I frequently picture a person, a walking, talking neurotypical person, who, after being impacted by an episode that leaves them “locked in”, is unable to communicate and to the outside world, they are brain dead. They are assumed to not feel pain, because they often can not relay a response to pain (although it is felt). They unable to move or even bat an eye. However, in their own functioning brain, they are screaming – I am HERE!

    We have heard stories of these people after stunning recoveries. They have told us of their frustration and their near insanity over not being able to communicate.

    I think that many people with autism are locked in similarly and yes, they scream, they bite, they meltdown. I would, too. Thank you for expressing this. I need to go hug my kid.

    http://www.guardian.co.uk/world/2012/aug/07/locked-in-syndrome-richard-marsh

  • http://ac-annuh.tumblr.com Anna

    Listening is very underrated. I think too often in our society, people are bent on making extra talk racket, judging, and basically flying by the seat of their pants trying to multitask and do a bazillion things at once instead of slowing down and actually taking in the world around them. I have asperger’s– so I cannot relate to having the struggles that the nonverbal variety of auties have. However, sometimes people will think that I am not paying attention when I really am. This bothers me obviously. I have had angry teachers slap my desk with a yard stick, yell at me to “pay attention missy!” and all that stuff (even after I was medicated for being attention deficit– a medication nightmare that I won’t get into). People who know me well say that I have bat radar hearing as a joke. And although I am not like that one blind dude who can click his tongue to navigate his bicycle around cars, you will probably get dunked if I am “it” in a spirited game of Marco Polo in the swimming pool. My good hearing is a blessing and a curse though. The good aspect of it, has to do with my musical background. I hear pitch really well, as well as I pick out very faint sounds, which is helpful when something mechanical is having issues and I can mimic it and describe it to someone who cannot hear it as well as I can. The curse part of it, for one, is that one of my very close relatives has noticeable hearing loss right in the sweet spot of my higher pitched hearing abilities. This is why he has to blast everything louder which sends my sensory into overload. Another curse is that I hear so many things I don’t think I was intended to hear. I hear people bickering, but especially the most hurtful thing, is when you hear your loved ones and peers talk bad about you and they don’t realize that you can hear them very clearly. My own parents I have heard talk about me like I am some kind of abnormal defect and it has chewed at my self esteem for years. They had zero idea that I could hear them talking about me like that until I pointed it out to them years later. Sometimes too, my peers have disliked me because they had to be on point and their best behavior because there have been times I have called them on their crap by walking up unexpectedly as they were gossiping about me. Some created animosity. Others desired sabotage. Some became anxious and got stupid. You really find out more about some people’s intentions when you observe like a fly on the wall when they don’t think you are nearby. Although sometimes I use my superb hearing for more entertaining uses sometimes too. Sometimes I go to a coffee shop, a book store, or a restaurant, and just sit and listen to the conversations people have. Same for when I used to go to school. You never know just how weird some of these conversations really are. You hear everything from morons attempting politics, to conversations about all kinds of naughty stuff, to weird crap children have pulled/things they have broken. But yeah, there I am, with bf, and we are drinking our mint chocolate espresso or smoothies giggling on the inside tucked out of the way when we overhear these things. Sometimes I don’t care to actively listen though if it’s just a bunch of noise though. Especially the case for those moronic people who talk on the phone while they are in a public bathroom stall and you hear other “extraneous noises” going on in their stall when doing so. If someone called me while doing that, unless they needed Imodium I will hang up on them. This is one of those places where I draw the line. Sometimes too though all that extra noise I can pick out and hear gives me sensory issues if too many people are around me in a public place. So my hearing abilities are a double edged sword. But, overall, a lot of people have completely lost the art of slowing down and listening to their world around them instead of tossing untold amounts of extraneous stimulation on top of everything like food lobbyists do with sugar. I see it all the time with the suburban moms on their cell phones on the nature trails. If you are giving your phone so much face-time, you forget to stop and listen. Look at the beautiful trees. Listen to the rustle of leaves. The many calls of birds. Every feature of the trail. People have forgotten how to do that.

  • Spicytomato1

    When my Aspie son was in third grade, a new boy joined their class and befriended my son. It was something to behold because most kids overlooked my son as a potential friend. This kid was so “typical” in that he was always talking, busy, moving through the world quickly and easily. So unlike my quiet son who’s earned every milestone the hard way.

    One day his mom shared an essay in which he mentioned my son. He basically said “E is a good friend because he is a good listener.” Years later I still cherish those words…and the fact that this boy could find something to admire about my precious boy.

  • http://www.facebook.com/janice.sangha.mitra Janice Sangha Mitra

    Did Nat experience any trauma while in the womb? I read that a high number of autistic people are womb twin survivors. I am a womb twin survivor and although I was never diagnosed as autistic I had trouble communicating and my nervous system was holding onto immense trauma and grief from experiencing my twin brother dying in the womb. I have integrated much of the cellular memory trauma now through various ways. Would be interested in anything you have to share about this, thanks

  • Jstjude

    I found the video inspiring but the articles authors words heartbreaking. All that matters is the moment you began “listening”. Not the time it took you to get there. While it’s sad to know a child’s anguish to not speak it’s also heartbreaking to hear the suffering of the parents who were unable to hear or understand. We only cherish and focus on the moment of success not the time you took to arrive. It’s true. Yet i completely understand because i too anguish over things i can not do or took forever to get. You tell me the time isn’t important how much time i need to “get it” but i know it’s hard to believe for yourself. It’s hard for me too. I want to know how to do things NOW!! I’m sure you wish that too. But in you i value more that you want to over everything. Your wanting to is enough. And when you can, great. But it’s your desire that tells me what’s in your heart and shows me your grand capacity for love. (((Hug)))

  • http://www.facebook.com/krishna.boyu Krishna Boyu

    Dear Friends,
    What do you think of not providing a typing aid like aid to a kid early in age,
    rather than use therapies to get his voice out? And what other strategies we can use to get his voice out. we all know they can listen and process, some aptly and some slowly, but the communication through speech is a problem.

    • http://www.facebook.com/bkort Barry Kort

      It might be that music, with singing and dancing, would be a better way to jump-start vocalization.

  • Karen

    Very well-written article. My hope for the future is that we *all* (including people who have responded on this board) become cognizant of People First language. Would we routinely label someone with cancer as “a canceristic boy?” Our friends with autism are people *first* — I have a son who has autism…he is *not* “autistic.” I’m just sayin’

  • docww

    Even though is much that we don’t know about the causes of autism, there is emerging evidence that our modern diet may be playing a role. Excessive fructose mainly from sugar and HFCS seems to be driving our current epidemic of insulin resistance, obesity and type II diabetes. When someone with nsulin resistance consumes high glycemic carbohydrates, especially from grains, their brain is subjected to large amounts of glucose. Because neurons don’t have an insulin gate, over time excessive glucose can alter neuron function.

    Nerve cell membranes also likely play a role in autism.
    Excessive omega 6 fatty acids from vegetable oils relative to omega 3 fatty
    acids alters cell membranes in a way that likely interferes with normal cell
    function.

    Thus sugar, HFCS, grain-based high glycemic carbohydrates and excessive omega 6 fatty acids—the foundation of our modern diet, likely play a role in many common brain disorders like autism. Through the process of
    epigenetics, these changes can stretch across generations.

    Although dietary changes will certainly not “cure” Nat, they
    might slowly improve his ability to function. At least that’s a start in the
    right direction.

  • Nicabod

    Listening to the various specimens of synthesized voice, I was very disappointed. The voice on.the weather bands (National Weather Service, IIrc) is excellent, so good that it sounds human, unless one listens for a while. The Amiga computer, back in 1986, had very understandable text-to-speech. It did sound synthesized, but not annoyingly so. The time announcements on.the.weather band sound very much like it.

    What really frosted my feathers,.though, was that around 1986 or 1987, Digital Equipment Corp. (DEC) had synthesized speech that sounded so natural that the only weakness was a relative lack of emotional content. Back then, they set up a phone number that one could dial to hear the synthesized speech. It was impressively good, as I have said. More-recent technology in most instances apparently doesn’t come close, although I have not heard Microsoft’s text-to-speech nor Google’s. Google Translate’s spoken output is surely not as good as was DEC’s, rather long ago. Even Stephen Hawking’s synthesizer (a while back) did not sound anywhere nearly as good as DEC’s.

    What happened to DEC’s technology? Did it get buried, before or after DEC ceased to be what it once was? Seems to me that Curt Nickisch could delve and might discover something interesting! Please tell him!

    It’s a great shame that something so good is apparently not in use. I really hope that somebody will follow up on this.

    • Kathy

      Nicabod, last I heard about Dectalk was that it was not developed beyond early versions of Windows. Other synthesized speech voices are pretty good, such as Eloquence and Neospeech.

  • Joanna Liss

    Profound and beautifully written. I am listening.

  • http://www.facebook.com/patrick.erin.parker.37604 Patrick Erin Parker

    hi my name is patrick erin parker and i have autism.

    • http://www.facebook.com/profile.php?id=1064701591 Danielle Garrigan

      Hi Patrick Erin Parker.

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