“Why Does He Do That?”: Why I Prefer Questions to Silence and Denial
December 15, 2007 by Kristina Chew, PhD
Filed under Health
“It had never occurred to me that Patrick’s classmates would not somehow intuitively understand that there was more to Patrick than what they were seeing.”
Writes Laura Cichoracki in today’s South Bend Tribune about how her second-grade son Patrick, who has autism, “gained two dozen friends in less than an hour.” A presentation by the Michiana Regional Autism Center about sensory integration dysfunction went, Cichoracki says, a very long way in fostering understanding about her son:
The kids were surprised to learn that Patrick is good at puzzles, knows all of the planets and likes outer space and is a big fan of video games.
Then kids were allowed to ask whatever questions were on their mind, and they had some great ones. They wanted to know why Patrick is this way, will his baby sister have autism, why he wears a weighted vest, why he screeches and flaps his hands, what else he likes to do for fun, if being autistic meant he was handicapped, did he like sports, and how autism was different from another classmate with Down syndrome.
I like it that the children at Bittersweet Elementary (that is indeed the name of Patrick’s school) could ask these questions. I’d rather that they ask them in a setting in which someone is there to explain and give good answers: There’s been more than a few times when Charlie and I have been on a train or just walking into the YMCA pool and he has doubled over and loudly screech-chortled. I keep him walking at these times; I can see the averted gazes, kids opening their mouths to ask their moms, and the moms quickly shushing them: Don’t stare. Don’t ask. We’ll talk about it later in the car.
But this silence is ultimately more harmful. It doesn’t encourage dialogue and discussion; it prefers denial; it isolates. It suggests that a kid who acts differently is not to be talked about and that there is something fearful and scarey and even wrong about being different in the way that Charlie is—–the very message that the Ransom Notes ad campaign has been putting out.
My own fear about the Ransom Notes campaign is that, by emphasizing what is difficult about autism and other conditions such as bulimia and OCD (”we have your daughter. we are making her wash her hands until they are raw, every day”), there will be more fear and ignorance, more stigma and shame about these conditions. People need to know that you kids with autism grow up into teenagers and adults and maybe they don’t follow the “usual” path—-graduation, college, jobs, marriage, their own kids, etc., etc.. They change and grow just as we all do; they’re not frozen into some autistic awfulness, rocking in dark corners of basements, “hostage.” It is fear of these conditions that leads to denial and denial to not doing anything to help a person.
Autism’s Edges asked, what would an “ad campaign to raise awareness of childhood neurological differences and social integration issues” look like if put together by the “autism parenting and autism advocacy community”?
Something of this sort of campaign already going on. The response to the “Ransom Notes” ad campaign was spearheaded by disability and autistic self-advocates and in particular by Ari Ne’eman, president the Autistic Self-Advocacy Network (ASAN). Ne’eman’s letter to Dr. Koplewicz has been widely circulated and, last night, he appeared on CW11 (New York).
And I think we make a simple contribution to raising real awareness when we go out with our autistic kids and feel pride, not shame or embarrassment; the stares are just part of the scenery. Jim and I have always tried to take Charlie everywhere with us and especially into New York City. Charlie loves to ride the trains and subways; to be amid the crowds and action on the streets; to gaze into so many store windows (whether they’re festooned with Christmas decorations or not); to be out and about. Yes, he sometimes has a difficult moment and I have to be ready to speak calmly and to look out for his head. But his being out in public, and being himself—with his speech that doesn’t always come out in words and clutching his blue case with his iPod and photo schedule under his arm—is the kind of “awareness” I am glad to promote.
And I’m glad to answer any questions about “why is he doing that?” too.
My difficulty is trying to explain ’something’ to someone whilst my children are actually present, well at least in a public setting where I need eyes in the back of my head and can’t really divide my attention.
Best wishes
This is a very important post Kristina, an important idea that schools and parents can work together to dispel the ‘mystery’ behind a child’s ‘difference’ and special needs.
When parents, advocates and school districts work together to create a simple, age appropriate awareness campaign based on dispelling myths and stigma, students with special needs and their ‘typical’ peers can all win.
Every child intrinsically yearns to understand and help, even those children with special needs…and they are sometimes the most empathetic people to be around when things go awry. (e.g., seizures in public places, or jumping up and down and crying, or ’screech/chorteling’
However, if a school does not allow parents to speak to a child’s classmates and teachers about a child’s strengths and special needs, with the support and guidance of teaching and therapeutic professionals, that is cause for concern.
Everyone must remember that whether or not an individual has expressive speech, they can understand everything, all the questions, and it might be upsetting for the individual. That is why it might be best for the student not to be present during the Q/A session.
Often in the heart warming awareness stories about typical children helping those with significant needs, the typical child is portrayed as the hero – and not enough understanding or acknowledgment of what the child with needs brings to the party.
Re: the strange BBDO campaign, I am so glad that the rest of the world is weighing in on what is a particular, peculiar Manhattan attitude towards people with disorders, or special needs, or any difference. Children who are not superstars have a tough enough time getting into schools, and the hyper-competitive world of child rearing assumes frightening stigma when a child has any difference. I once said to a friend early on that my husband and I think all children are wonderful and have so much to give, and the friend said, in a shocked tone, ‘well, God bless you.’ The friend had a child with special needs.
Having been at the point where most people don’t notice my autism, I sort of miss that window of explanation, because now people usually assume certain things of me I wish they didn’t (and I engage far too often in conversations I really don’t care to have, though it’s so common it’s a regular thing. Often it feels that either I have to be extremely cold to the person or abandon a good deal of my comfort).
Cliff
I too prefer questions to assumptions. Questions can be answered and ignorance lifted. Assumptions lead to more ignorance.
Caroline L, thanks for that point about the BBDO campaign and the “peculiar Manhattan attitude.” Especially towards disabled children—-there is an “epidemic” of this among some parties that we know: The concerns are about boarding school, SAT scores (a 1560 is just too low), and then getting into the prestigious law school. And the announcement of a child’s wedding in the NYT wedding pages: When one has a child who is not a candidate for any of that (what a relief, to be very honest), one is not considered able to participate in certain conversations.
Cliff, what you write makes me think of some difficult interactions my husband has had—-people react with rolled eyes, exasperation, when he’s having an “ADHD moment.” He’s not inclined to always say why something is; it can still be very, very painful.
Re: adults with ‘adhd moments’ who among us can say we do not have those?
or sensory processing issues, or feeling anti-social after a long day of diplomacy at work? dosnt that sound like most men? – and women?
There have been some articles recently assessing a certain state governor – whoa! the professionals who use the DSM IV to label kids would have a field day with his characteristics.
And yet, though he is having some adhd moments, he is striving to help the state and its citizens. He is a great American.
New York City is full of strivers, and children as trophies – the smart well adjusted child gets into the right nursery school, and it opens social and financial doors for the parents…and life is a perfect vista of parties, the right co-op, club memberships, the right on-going schools, college, sparkling announcement in the Times…what a lot of pressure.
Twice this semester I left my keys to home and office (my car key is separate) on my desk at home—-Jim had to come to Jersey City and we did a drop off at Journal Square—-
Ha! Assessing the state governor! Do you have a link to that, Caroline? I have a particular friend I’d love to send that to.
I have a ADHD sister, so I appreciate what you’re saying, Kristina. And we’ve had an interesting respect-based relationship based on allowing each other to be, well, each other (mostly), one that’s otherwise been less prevalent, as we’ve both been in those same general situations, where it’s just hard to explain yourself to everyone. I think it gets to her more than it does to me (because I’ve really learned not to care anymore about that kind of thing, and she’s a really social person, anyway).
Cliff
My own state governor is now infamous for not wearing his seat belt when he was in a serious car accident—the state trooper was driving at 90 mph or some such; he was on his way to the governor’s mansion to mediate a meeting between the Rutgers women’s basketball team and Don Imus.
Charlie always reminds us to “buckle up.”
Brendan has spoken to his classmates twice about his autism, OCD, & Tourettes- in 4th grade & 5th grade- & it led to a lot more understanding from his school friends about his sometimes odd behaviours. (Since almost all of the kids in his class this year have heard the “talk” he decided it wasn’t necessary.)
He originally decided that he wanted to speak to them because he was afraid that the kids would think that he was ticcing & running out of the classroom (due to anxiety) in order to get out of his school work or to get attention. He also answered questions at the end of each session. His teachers noticed that Brendan’s talks made things easier for all of the kids with IEPs, not just for Brendan. We’re convinced that having the info come, matter-of-factly, from Brendan himself had more of an impact than if someone spoke for him. It’s also helped him become better at noticing situations when a bit of explanation is helpful, & he’s been overheard explaining his tics to the neighbour kids & parents of kids at school. We’re really proud that he’s learned to self-advocate at such a young age.
That is so tremendous—helps me to think of him speaking. A little explanation goes a long way!
Lisa/Jedi,
That is really great that Brendan feels comfortable talking to his classmates about what he experiences. We encourage that with our child, though a lot of prompting is required, and everyone feels happier with the issues discussed in a friendly way.
Cliff, I do have the links, not that savvy, but I think the articles on the state guv are in the most recent issues of Vanity Fair and The New Yorker magazines.
That’s good enough for me! Thank, Caroline.
Also, I applaud Brendan for being that open. It really does so much.
Cliff
I don’t know why I’ve always been fascinated in autism; nobody in my family has it, nor do people I know. However, I have recently, on 2 separate occasions, met adults with Asperger’s, and I love being with them. They both told me they don’t have any friends. We have an understanding that when they become to “clingy” as they said is the main reason that they lose friends, that I tell them that. I’m working with one of them to help her keep some eye contact when she speaks. She has asked me to help her with that. She, at age 25, was just diagnosed last year.
The comment in your blog about people quieting their children who ask questions are, I’m pretty sure, not wanting to hurt the autistic child’s feelings. I don’t believe that the intent is to keep it quiet for the sake of their own child. Education is the best approach, as people I have spoken to aren’t sure how to approach the subject in a way that is respectful.
I’m fortunate that the elementary school J goes to has their autism program as an integral part of the day to day routine. All the kids are educated about it and questions have always been encouraged. Now, the middle school he’ll be going in to seems to be a different situation that I first thought which has me concerned.
While we’ve felt the positive of people asking questions about J’s autism and behaviors and we’ve given people a better understanding we’ve also felt the negative side too. We have a neighbor who has asked questions and has taken the answers given and twisted them around in a way that he has decided J is a problem child and troublemaker. His reasoning is completely unfounded and he takes every chance he gets to blame incidents that happen, epecially to his daughter, on J. Even if J wasn’t around when something happened. It’s ridiculous and I’ve gone around with this neighbor more than once.
I think it’s one of those times where he had preconceived notions about J and when my answers weren’t what he wanted to hear he found a way to twist them around so that they were. Pretty pathetic.
Very—-