but what if he’s wrong?

 

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{image is a photo of me at a podium, speaking into a microphone at an Autism Speaks walk kickoff in 2010.}

Yesterday, I read a post that was written a couple of months ago, but just made its way to my screen. It was written by a woman who goes by Amythest on her tumblr, Neurowonderful. She describes herself as an artist, writer, public speaker, advocate, and activist who writes about autism and disability.

In the post, she describes a painful interaction with the father of an autistic young man at a recent Autism Speaks Walk in Vancouver. She and a number of other autistic activists had set up a table at the walk in hopes of educating walkers about some of the harm that the organization does in their name.

The post, poignant and important throughout, became excruciating to read here ..

The worst part of all of this is that, while this confused, hateful human being was spewing Autism Speaks fear/cure/tragedy rhetoric, his son was there, listening, the whole time. His son had also been standing on the stage beside him while, as Marvin described, his father told the sad story of his and his wife’s disappointment, of their dashed dreams for a healthy, happy child, and of how his son would never grow up and would need care for the rest of his days.

His son was standing nearby, giving high-fives to the passing walk participants and listening, when his father said,

“Some people say to me, ‘I think he understands more than you know’. No, I know my son very well. Sure, he understands things, but it’s on a very basic level.”

I couldn’t breathe.

You see, that was me once. That was me making speeches about the need for a “cure,” and publicly lamenting the tragic consequences of autism. That was me, bringing my child along to places in which she — in all of her beautiful, glorious, tangled Brookeness — was being called a tragedy. That was me, thinking that I was doing all the right things by my child by doing all the wrong ones. That was me, thinking that she didn’t – couldn’t – understand.

I was wrong.

What if that dad is too?

I am so grateful, so incredibly, God damned grateful, that I came upon the voices of those who had walked my daughter’s path before her. Those who found ways, in speech, in text, on letter boards and in picture exchange systems, in prose and poems and music and blogs and books, to tell me what I so desperately needed to hear — that they — and she — understood.

I am even more grateful to my girl for telling me herself.

How many times and in how many different ways do our children have to show us that they are taking in so much more than we can imagine before we believe them? How many adults have to come forth through newly discovered methods of communication telling us that they were trying – trying, trying, trying – all along before we stop writing them off as far, far more constrained by their challenges than they really are, or have to be? How many signs will we miss before we take the chance that perhaps, just perhaps, our kids hear and internalize our words, understand and build their self-images around our actions?

When we speak about our children in front of them (and yes, speeches from stages and published blog posts and conversations in the supermarket and with their doctors and therapists and teachers and grandparents are all in front of them) as though they are not present, we make it clear, intentionally or otherwise, that we either don’t believe them capable of understanding us, or that we don’t care if they do. Once I realized that, I was willing to live with neither. I’m guessing you’re not either.

When we speak of our children as burdens, as tragedies, as part of a horrific epidemic, a terrifying tsunami, as births to be prevented in the future, put simply, we destroy them.

It is easier, Frederick Douglas said, to build strong children than to repair broken men. Our children face enough challenges thanks to both disability and a world not built to accommodate it. The last thing they need is to be broken at home before they ever set out into that harsh and unaccommodating world.

I have been thinking a lot lately about the trials of adolescence with the added challenges of disability. About the reluctance of so many parents and practitioners to find a way to communicate to their autistic or otherwise disabled children information about puberty and sexuality. About what that must feel like as a young tween or teen whose body is changing, whose hormones are raging and whose moods suddenly whip around like a sail in the wind without warning nor explanation. About what it must feel like to be growing hair in places it’s never been, bleeding from places that aren’t supposed to bleed, waking up having ejaculated in the middle of the night. I try to imagine what that would feel like without information, without understanding, without context. It would be terrifying.

If you think I’ve switched topics here, I’d ask you to think again. We’re still talking about presuming competence – assuming that our children have or will eventually have the tools to process information even if at their own speed, in their own ways, and in methods that appear very different from our own. And presuming them worthy of trying to deliver that information. Because knowledge, particularly knowledge about what is happening to one’s own body, is vital.

I remember in college reading about a sociology study in which two sets of participants were fed brownies, one group having been told that the brownies contained marijuana, the other not. The group who knew they were supposed to be stoned described feeling silly and euphoric while the group who didn’t know what the hell was going on reported feeling dizzy, out of control, and flu-ish. It was all about the context.

A young girl menstruating for the first time is a big deal in many cultures. In some, it is celebrated. For many, it’s at the very least recognized a rite of passage. But, with no understanding of what’s happening, a girl, particularly one with debilitating anxiety, might, with pretty good reason, think she’s dying. Literally.

Talking to our kids isn’t easy. Talking to them about things like sexuality and sexual development are even harder. But that’s parenting, guys. Finding a way to deliver information to our children is the job we took on. And if they’re not yet able to prove to us that they’re taking it in, well, we’ll just have to rely on some faith.

In conversations about autism and empathy (or sentience, or intellect, or comprehension, or competence), I tend to use a fairly simple metaphor to illustrate my thinking, as follows.

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.

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 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.

We’ve got to stop concluding that our kids have no understanding of what’s happening around them just because that understanding may be different from our own or isn’t expressed in the way that we assume it should be. We’ve got to start acting as if there’s at least a possibility that our kids are hearing us, seeing us, watching us, creating their image of themselves and how they fit into the world based on how we speak and act, how we treat them and others, and how we relate to others vis-a-vis them, and, for the love of God, act accordingly.

We can’t keep pretending they don’t hear us just because they can’t yet prove that they do.

Amethyst’s post end’s with this.

He backed away and called his son over to him, instructing his son to give us each a high-five in the voice of a preschool teacher. His father stared on in undisguised anger and dislike as our high-five turned into a hug. We briefly intertwined fingers, and I heard him inhale as he smelled my hair, and I tried to tell him through the squeeze of my hand that I was sorry, and that I liked him the way he was. And then they were gone.

He never, not once, introduced his son or called him by his name.

 

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{image is a photo of Brooke, squatting down to dip her fingers into the mud at the Autism Speaks walk in 2011 … where she heard every word.}

It is far easier to build strong children than to repair broken men.

Our children (and the adults who walked this path before them along with the adults they are soon going to be) deserve– and need — to be built up. The road ahead is not an easy one.

 

 

33 thoughts on “but what if he’s wrong?

  1. “We’ve got to stop concluding that our kids have no understanding of what’s happening around them just because that understanding isn’t expressed in the way that we assume it should be.”

    Or also, just because it isn’t the same understanding that somebody thinks it should be.

    • edited to read, “We’ve got to stop concluding that our kids have no understanding of what’s happening around them just because that understanding may be different from our own or isn’t expressed in the way that we assume it should be”

  2. My timehop reminds me how I used to think. .. thankfully people like you and Brooke and ariane and Emma had forged sooner and gained enough popularity to show up in those first lost days of dr google..amethyst also is on my list of links to newly dx… along w of course ibby, invisible strings, thethirdglance, musingsofanaspie, barb and so many others. My son will hardly know those dark days. .. from me anyway. .. because of those brave people who had the courage to spit in the face of convention and say we’re here and this is what you should know in spite of ridicule and opposition. I will be forever both thankful and regretful as I didn’t know back when my older son was young but have tools to help with my younger. ..ok ADHDbrain on very little sleep is rambling. .. but all this to say. . To those autistic people who follow here a million times thank you… some of us out here are listening and signal boosting and chipping away at those brick walls of preconceived thought with you

  3. The line of reasoning that, “don’t worry, they don’t understand”…is just infuriating because…let’s hypothetically say it’s true: so what? shouldn’t you still protect their dignity and find ways to discuss their life that is respectful, loving?

    Even in a hypothetical where someone may not be picking up on what is being said…that just means they need to be protected and taken care of MORE than others. They’re the most vulnerable…and yet, for far too many people, the most vulnerable are the very ones we feel comfortable belittling, dismissing.

    Autism Speaks makes the exact same mistake all the time…when asked to use more respectful language, they and their supporters say, “Oh, but we’re only talking about the most severe cases of autism”. As if some autistics deserve respect, but the others can just be disregarded, treated like non-entities.

    The ease with which people use petty, dehumanizing terms for the most vulnerable is distressing. It’s a window into how they view autistics…as less than, as people who can do without even the most basic forms of courtesy, respect.

    I think the worry is that, if we talk about autistics like they’re people, then we can’t be honest about the challenges, the tough days. But this is a false dilemma. Respecting the dignity of autistics and discussing various challenges in an honest way: these are not mutually exclusive things. We can do both.

    But the thing is, to do both, we have to choose to do both. Right now, far too many people are choosing to laugh off the idea that people on the spectrum are full human beings who deserve to have their dignity protected and fought for.

    I think the kid in this post gets it, hears more than people realize…probably hears a heartbreaking amount of what is being said. But I just go back to the hypothetical: let’s say he doesn’t. So what? How does that make treating him like a non-entity okay?

    • The whole thing irritates me to no end. .. my kids are opposite ends of the spectrum. .. bug supposedly has an IQof 50… thanks to stringent testing methods unfriendly to non speaking people. I hate the questions in front of him at every Dr appt. .. I’m terrified of kindergarten. .. his SLP has him reading sight words. .. he can spell knows more than most kids his age. .. but if I only looked at the test scores like so many do. ..and believed them. .. how much would I have missed and be missing.? I’m not even autistic and parents parroting the common thought and ignoring reality gets me fighting mad. ..I don’t know how y’all do it

    • I learn so much from you and Jess and everyone out there who is brave enough to say what I need to hear. This story broke my heart. I was reminded of when my mom (and other loved ones) was near the end of her life, and people talked as though she was already gone, or couldn’t hear them, or didn’t care because there was no obvious response. I keep thinking what if she hears everything and is screaming inside? A dear friend also holds me accountable when I “speak into being” or say things like “m. Is out of control” or “I’m in trouble when he gets older” because people often live up to or down to our expectations, if we say one child is athletic and one is brainy or not so, we’re telling them how we see them. And I need to stop that.

  4. Grandpa DD & I have often talk about how amazingly bright Brooke is. Her sense of humor & her ability to play back conversations that we had years ago prove that. Brooke, like so many others, listens & understands (better than most people we kinow).

    Love you,
    Mom

  5. Btw for anyone interested amethyst also has a YouTube series called askanautistic… that’s actually where I found her tumblr gets too crazy with the reposting to comment so don’t use it much

  6. Although this post targets parents and families of children affected by autism (or other challenges) I think it is equally important for the society to understand what you’re trying to say. I’m glad your daughter has a strong parent, and with people like you, change will come about 🙂

  7. Pingback: » but what if he’s wrong?

  8. Jess, I appreciate the honesty with which you share your evolution in thinking. When my son was diagnosed on April 1, 2011 the clinical psychologist gave me a list of resources and Autism Speaks was at the top. Something you wrote was featured on their site and I’ve been following you ever since. Admittedly, the initial shock of my son’s diagnosis and fear of the unknown were crushing. But it didn’t take me long to declare that, regardless of the challenges, autistics (and ALL people) deserve our respect. Thank you for sharing your journey. Thank you for introducing us to autistic self-advocates!! Thank you for being humble enough to admit where you fell short, so those of us who’ve come after can learn from you. Because of what you’ve taught me, “Presume Competence!!!” is a battle cry in my home. I am grateful.

  9. Startting in 1st grade, my son started not wanting me to talk to anyone at school, ever. I thought this was one of his “things”…. until I thought some more and realized…. he probably doesn’t want me to talk about him. HIs anxiety about this has gotten better since I have been aware of it. I think I can still do better though. I can tell you that no test can ever determine how smart he is and no one works harder than he does, every day.

  10. Hi Jess

    I work with/look after/am friends with people who are non verbal One person substitutes sounds to represent speech she has good comprehension and enjoys being read to. Another is silent (literally but talks with her eyes) she also has good comprehension. The amount of people who assume nonverbal=doesn’t understand a word is annoying to say the least I find most people with severe to profound ID understand a least a little at most a lot (most excluding person deaf-blind from infancy) Unfortunately those that think that people with ID don’t understand the spoken word tend to make comments/pass remarks in front of them. I usually say “You know she just heard you” “* ‘s ears work ok”

  11. I keep quite busy and don’t get to read your full blog very often. This one brings tears to my eyes. My 4 year old son was neuro-typical until a rare form of epilepsy caused brain damage when he was 19 months old. He was diagnosed with autism this year. As parents, this is obviously not how we hoped our lives would go. But, my perspective is that my Levi is going to be who he is supposed to be and that he gets the privilege of seeing the world like nobody else, or at least like very few people will get to see it. We certainly have days that are frustrating and exhausting and days that I want to make it all go away. I firmly believe that he understands WAY more than I could ever know, but I do forget that. I’m SO grateful for the reminder and will be having my husband and other family members read this post. I am interested to know what your thoughts are on the balance between finding a “cure” and accepting it all. I believe in fighting as hard as I can to help Levi live his best life, but how do we really know what that is?

      • Ok. Yes. This is exactly how I feel. And, I have even hit that same realization that if we were to make the autism go away Levi wouldn’t be Levi anymore. I’ve already gone through that once, I don’t want to do it again. I feel weird sharing this, but I wrote a song to him while he was in the hospital last summer. I share it because I want to know your thoughts on my perspective. Would you change anything I said? I keep my music on file at home and don’t want to ever share it with him if it’s something that could be hurtful to him in any way. I understand you have many people who seek your input. If this is too much, please don’t worry about it. Thanks.

  12. I love the analogy of the missing keys! So true! My 8-year-old has shown me time & time again, over the years that his perspective is unique, his thoughts are his own, and his experiences are authentic. I know at times people think I’m crazy when ask my son questions like, “how was your day?” He is non-verbal after all, but he can smile, he can whine, he can express himself with music, and humor. Sure it takes an open mind and patience to communicate effectively, but the same can be said of communicating with anyone – of any age, race, religion, ability, etc…
    I could just dismiss my son’s attempts to communicate as coincidence or chance, but if it’s all just luck or chance I should buy a lotto ticket!

  13. I am the organizer of a social group for autistic adults, of which I am one myself. For the last couple of years I have had a table at the local community living resource fair. Sometimes a parent comes up to talk to me with their teenage/young adult child in tow and asks about my group, then proceeds to tell me about their kid. I always insist on talking to the kid him or herself, because I don’t want them to come to the group just because their parent wants them to, if they don’t actually want to themselves. This sometimes flusters the parent. It sometimes flusters the kid, who may not be used to people talking to him or her. I’ve seen a few who act like they would rather crawl under a rock than talk about themselves, but I think that comes more from being a teenager than being autistic. But I have seen enough young people who are so pleased to have somebody talking to them and not to their parents that I’m going to keep doing it, even if some of them are embarrassed.

  14. Reblogged this on Serenity Spectrum and commented:
    First of all I LOVE this woman. Secondly… THIS is exactly why we will not have naysayers in our life. THIS is exactly why Beth does not go to a school that saw her as less than. THIS is exactly why ALL individuals, especially those with Special Needs, MUST be treated with Respect and Kindness ALWAYS. Whether they can tell you or not, they understand everything you say and how you say it. Please THINK before your speak about the precious gift God blessed you with, they deserve the BEST, which starts with loving parents, who are proud of who they are, not mourning what they could have been. Embrace diversity, embrace your extraordinary Autistic loved one, and you will see a wonderful world with endless possibilities. ❤

  15. IF he’s wrong? He’s wrong. His son understands. Gestures and emotions and words and subtext. The son connects with people; what else is a high-five or a hug but a moment of connection? And if he’s connecting, he’s understanding. (Of course, you know that. That’s what you’re saying here, and beautifully.)

    BUT: I’m uncomfortable with calling the father “hateful” or “broken.” Were you broken, when you spoke in similar (though clearly not so dismissive) ways? Should we have given up on you? Where would you be as a voice that so many people listen to if you’d been written off for working with Autism Speaks? It would have been a HUGE loss. Why was is OK for it to take however many years for you to learn, but if he’s not there yet, he’s broken? What if he could have been the next Jess? (Yeah, I know. He’s probably not. But who are we to judge? Who are we to presume INcompetence?)

    Look, I say this as a parent who often feels inadequate next to you (and next to the many others in the community, autistics, parents, siblings, friends–some of whom are friends of mine–who are so much further along in connecting and advocating than I am). I fear that you’d judge me if I question some of the things you or others talk about, if I disagree on one point or another. That if it takes me longer to get to where you think I should be–where you all are–you will consider me a lost cause and stop trying to help me to learn. Please don’t. I’m just human, learning, trying to keep up, aware that I’m not there yet, but doing my best, or what I think is best. This father may not be. But what if he is? That’s what worries me.

  16. Thank you, a few years ago when all the testing and evaluations were so dire for my son, I blew them off. I knew, in my heart and could see and feel that he was in there struggling to get out. Guess what, I was right. Beautifully written piece.

  17. I think one of the biggest challenges autistic people, like myself, face in this society (mostly as children and adolescents, but it affects adulthood too), is the fact that
    there is so much PRESSURE placed on children and teens to be the best; to compete; to be as smart and intellectually versatile as the many generations that came before them, but for a lot of autistic children (and children with other disabilities), this just isn’t feasible. I certainly wasn’t the brightest kid growing up (from what little I remember of my childhood, which is probably mostly repressed, and for good reason I’d imagine), but I did have one glimmer of hope in me – one thing that made me stand out among the crowd. In sixth grade, I was in a young scholars program facilitated by my music teacher, Nancy Gormand. We got to choose a topic on which to do some research and write a paper, and in the end we presented a power-point presentation on our topic. I chose paleoanthropology/evolution of humans, and when I met my mentor, someone that I had contacted in the field to help me with the project, whose name was Terry Ritzman, a CSU graduate, we automatically started having a pretty awesome conversation on paleoanthropology (I had done a little bit of research beforehand, and knew about Lucy the Australopithecene, and other various hominid species). Nancy, who had driven me over to CSU, was completely lost. She was amazed that I could even pronounce “Australopithecus” (apparently most kids that she knew of in sixth grade couldn’t do that, autistic or otherwise). After my meeting with Terry, I began checking out college textbooks on paleoanthropology from my public library (or maybe it was the CSU library, I don’t remember which), and I just breezed right through them, loving every bit of it (I was excited to see how far back I could trace our still-human-like ancestors, which surprisingly went all the way back to Ramapithecus, a species that existed approx. 7 million years ago). Before the power-point presentation at the end of the semester, I actually got to borrow some skulls (or casts of them, anyways) from Terry’s lab, and set up a presentation board at my future high school, which was brand new at the time. In the end, I have never felt more proud of myself then I did that semester, because after that I pretty much was given as much of a chance as my peers to be the best I could be (rather than the best that I could be compared to the standard). Hell, I didn’t even start taking Spanish until eighth grade, because of my stupid Individualized Education Program (IEP) class, which was basically just a social skills class for more mature students. So basically, what I’m trying to say is that a lot of good structure to begin with will ultimately help these kids out TREMENDOUSLY (although it’s good not to overwhelm them). And in my experience, even with the lack of support that I got growing up, I still can pass for neurotypical now, at the age of 21. I’ve matured enough to the point where people don’t even notice my autism, so even if a kid doesn’t look like they have a lot of potential to begin with, they’ll probably be able to have a work output ten times as big as a neurotypical when they get older, if you give them the right kind of structure they need (and, more importantly, in the field they enjoy the most). Jake Barnett is a really good example of this: he was about to be placed in special ed, but his mother took him out, noticed he like mathematics and physicals A LOT, and let him explorer those subjects to his liking as a kid. Now, he’s like 16 years old and has a Masters Degree in Astrophysics, or at least he’s working towards one. He’s a real life Sheldon Cooper, and he owes it all to his mom, who didn’t dismiss him as a lost cause, or put him through a strict curriculum that focused mainly on the needs of neurotypicals, and not on his needs. And I think that there’s a lot we can learn from that.

  18. Reblogged this on lovin' adoptin' and commented:
    I’m sharing this wonderful post by Jess at Diary of a Mom because what it says is essential to being an Autism parent. We must realize this as we move forward. We must make what she says part of our every move, our every word.
    Just as Jess states, I am also so thankful for those who’ve taught me lessons about Autism that I would never have learned if they hadn’t come into my life. For me those voices who’ve changed my outlook on Autism aren’t just the Autistic adults, but also Jess (Diary of a Mom) and Ariane at Emma’s Hope Book. I hope you take the time to read what they have to say. It’s so important for our children’s futures.

  19. Jess,
    I’ve been following your blog for a good while now, at the recommendation of my mother. All of your stories are powerful, but this one was so relevant to me today. Beyond being a big sister to a wonderful little brother on the spectrum, I’m in my second year of college pursuing a degree in OT, and a job coach at a life skills program for young adults with ALL KINDS of disabilities. I have been working there for 2 years, and sometimes I wonder who is teaching who.
    It was just the other day that my favorite (promise not to tell!) student came into school claiming to have had a seizure on his bus ride in, yet again. I see him later that afternoon when he brings it up to me, and I try to talk with him and tell him he *probably* didn’t have one. And that he gets so nervous thinking he may have one, that he works himself into an anxiety attack. A coworker of mine, older but with much less experience, came over to me and sat on the other side of our student. He interrupts me to tell me I shouldn’t be talking to him about it, because he might get upset again. And then he says it. “Well, I don’t think someone as *low* as *name* could be having anxiety. I just don’t think he has the wherewithal to have the type of thoughts you would need for anxiety.” And then I looked into my students face, and then my heart broke into a million pieces. Was there a light of recognition in his eyes, was I sure that he had heard and processed what his teacher has just said about him? No, but it hurt anyway. First of all, thank you Dr. Ignorant, but my dog has anxiety. Not to mention that my students is riddled with anxiety, so much so that he shakes. Everyday he asks me urgent questions, eyes wide and hands twitching. Your claims are so outlandish and false, but also completely hurtful and inappropriate. My student is smart and he is kind, and even though his expressive language is not always evident, he is reflexive and I know that he understands.
    To avoid upsetting the quivering body next to me any further, I simply told this coworker that I believed he was underestimating our student’s abilities and that I was done speaking with him about it. I spoke to my supervisor, so he’ll have a scolding. But what does that matter when the damage has already been done? And that’s why I cry. For all of my students, for beautiful Brooke, for my sweet brother, because there will always be someone there to write them off as “stupid” because they can’t communicate in THEIR way. So we just have to be much stronger, and much louder.
    -Sarah

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