DECEMBER 15, 2012 10:31AM

Dreading Reading About Newtown, Connecticut

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I opened the paper this morning, chanting,  “Please don’t let it be Asperger’s. Please don’t let it be Asperger’s.” I scanned the articles quickly about the shooting in Newtown, Connecticut, dreading that I would find out the gunman had Asperger’s Syndrome.  And he did, of course.

The same disorder my son has. My heart twists. I am afraid, in a deep, wary, sickened way, and grieved, in a deep, weary, sickened way. Will everyone avoid my son now? Treat him with caution? Label him as a threat? Watch for signs of violence?

(As I do. I will admit it, for if I don’t today, I will do a disservice to every child who died, and every parent who is afraid to send their child to school on Monday.)

Let me tell you what it is. You think you know, but you don’t. You only know the extreme cases, the worst cases, the way that we only know about the worst cases of schizophrenia, or Tourette’s. Asperger’s Syndrome is a type of autism. It is often called “high-functioning” autism because those who have it usually have very high IQ’s. Like over 100 IQ’s. Like over 125, like over 150.  Children with Asperger’s  go to school, some even go to college. Parents, like me, often like to brag, or almost brag, that Bill Gates, Madame Curie, and Thomas Jefferson probably had Asperger’s.

 Asperger’s  often simply means that the child is socially awkward. He or she is unable to interact with the peers in regular ways. They are immature, shy, and fearful. They do not know how to read others’ emotions, and they have trouble handling their own.

It does not mean that they are head-bangers. It does not mean that they are smearing feces. It does not mean that they are violent.

Or maybe it does. Some children with Asperger’s do, indeed, become violent.  Unable to express their intense, chaotic, cramped up emotions, they often lash out. But it most often at the people that they are closest to.

To be honest, again for those babies in Sandy Hook Elementary School, I will tell you that it wasn’t a surprise to me that the gunman killed his own mother. My son has hit me twice. He has screamed at me innumerable times.

He often has tantrums, roaring, raging tantrums, that sometimes last an hour. I close the windows so the neighbors don’t hear. I cancel my plans for the evening, I go get his “coping mechanisms,” – his soft blanket, his earphones, his Legoes. And I get tissues for me.

For it hurts. It’s hard. And yes, it’s sometimes scary. I look for signs that he might become violent. I drive, every month, an hour away to the closest child psychiatrist, who meets with us for ten minutes, typing away on her computer the entire time, only to “up” a dosage of his expensive medicine again, which means another prescription, another trip to the pharmacy, and another copay.

I drive him weekly to the psychologist. I hear her ask questions that he doesn’t know how to answer. I hear her tell me that it’s not my fault. I hear him make promises that he won’t keep for more than two days. I cry on the way home, while he reads a 400 page science fiction book. I reach for another tissue, and another, and another, another….

I read on Facebook about this sixth grade party, the local soccer team’s celebration, this family’s joyful visit to Santa. I have never done anything like that with my son. He is afraid of Santa. He has no real friends. He hasn’t had an invitation to a birthday party in years. He hasn’t had a “play-date” in, well, ever. Shit, I’d be happy if someone just played with him when he was outside in the yard.

For most people sense the difference in my son, and when they try to look him in the eyes, and he can’t return  their gaze, they turn away. Then snickering, or grimacing, or smiling a fake, condescending smile, they draw back, they go away, they leave us alone.

Do you want to help protect your children from senseless violence? Do you want to help the nation avert more crises like the shooting in Newtown? Then talk to a child with Asperger’s.  They often have a “special interest” – like trains, dinosaurs, Legoes, or Star Wars. Have a conversation with them. It may take a little longer than the five second encounters with your friends’ kids that you’re used to, but it may be surprisingly interesting.

And while you’re at it, talk to the mom. Ask her how she is, and mean it. And when she says, “Not so good,” ask a follow up question. Ask what is wrong. Give her a hug. She doesn’t get many. Not from her son, anyway.

You want to help our nation heal? Iinvite a child with Asperger’s to your son’s birthday party. Invite him over to play. Invite him to watch your son’s soccer game. You will be surprised at how earnestly he will cheer your son on, and how grown-up he is when he talks to you.

You want to stop violence at elementary schools? Then stop avoiding us, stop ignoring us, stop isolating us, the people you are most afraid of. Do it now, do it for my son, while he is still full of feeling, still malleable, still hopeful, and present.

For they are present. If one in 88 children are now on the autism spectrum, as the Center for Disease Control states, then these children are everywhere, on the playground, in your daughter’s Brownie troop, in your son’s Church group, and yes, at your child’s elementary school.

Hear me again. Most people with Asperger’s are not violent.  Most of them are quirky, delightful, compassionate, beautiful children who just need an extra few seconds of your time to get to know them. Teach your child to befriend them. Teach your child to talk to them, to not expect eye contact, to listen, to maybe learn something new about the Titanic that they never knew, didn’t really want to know, but nevertheless, really is quite interesting.

And teachers, instead of resenting the extra time, the extra paperwork of the IEP’s, the extra meetings with the parents, and the extra accommodations, perhaps you could welcome the child with Asperger’s,  into your classroom. Perhaps you could let him give a presentation on rocks instead of on his future goals, or his family, or his feelings about a book, which he can’t fathom, he can’t explain, and he surely can’t put into words.

And teachers, please, make everyone clap at the end. For he is doing the best he can. He really is. He is trying to fit in, he wants to fit in, he is desperate to fit in. He just needs you to widen that definition of what it is to fit in.

I cry while I write this. I type, and I hope, and I fear. And then I sign my name, which is a pseudonym, and  I reach for another tissue. And another, and another, and another.

 

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I hear you.

I can't equate the Newtown tragedy with Asberger's ... yet ... but I had a child on the spectrum of disorder ( I simply won't refer to it as a disease, ) and I see where you're coming from, here.
I'll add that I had a child on the spectrum.

She's 22 now, and taking a holiday from university in England as I write. She had every affliction you mention, including the precocity to read 400 page books at twelve.

There is light. It can/does end. They can/do adapt. It costs, in terms of subjugation, of bending, conforming ... the other word, adapting.
They love no less, they feel no less, just their boundaries shift, are vague and unfamiliar.
We can teach them the boundaries.
We didn't ever resort to medication, but I fully sympathise with those who have to go down that road, especially when violence is involved.
My daughter paid special attention whenever I laughed, trying to discern what I thought was funny. She learned. She's one of the funniest people any of us know.
What most people who laugh at or with her may not know, however, is that she worked hard for that ability, an ability the rest of us take for granted.

I wish you and your son every success, Kristina. There is light, and you sound to me like a wonderful mom. Good luck.
Listening here ... first to you ... and then to Kim ...
Thinking of his daughter ... then and now ... of her smile ...
and of his ...
Thinking of your son ... and of his mother who loves him so ...
who so hopes for a world where all the treasures within him are ...
honoured ... and allowed ...
Thinking of tissues ... and another ... and another ...
Thinking of a high school student of mine ...
who wrote an essay once for me ...
who looked forward and hoped one day ...
to help others know from deep inside ...
what it meant to live with Asperger's ...
who wanted to share ... what it is ... and how it feels ...
and how ... to begin, perhaps, to understand ...
I see him on a night when he stood in our auditorium ...
and read his words ...
to an audience of his peers, of teachers, of parents ...
of his dad ...
who ... despite a medical degree ...
had never been able to allow ...
who his son was ... as he was ...
as though for him ... nothing about his son ...
had never ever been enough ...
until this night ...
and his son's words ...
and finally ...
finally ...
tears ...

I don't know how long the opening between these two was able to last ... but I watched as ... a son's words ... offered ... to speak his truth ...
were, for a moment ... a first moment ... heard ... by the one who most needed to hear ... I watched a son, use one of his strengths ... to reach across such a divide ... to reach a dad who had hardly ever heard his voice ...

There is light ... or can be light ... if we will allow each child to share as you and Kim suggest ... if we reach out and do not push away ...

I think about our clapping ... and think of my student who spoke that night ... whose ears were hurt by any loud sound ... and for whom ... clapping would best be heard ... if offered gently ...

So many children lost yesterday. How many others might be found ... if all the world could hear your words ...

May you feel the hug yourself ... that here ... you so warmly ... give ...

Thinking of you ... and of your tears ... and of the gift ... of hope ...
Very touching. I hope your son will be able to have the kind of life Kim's daughter has. FWIW, admiration for what you do...
kristina - mother of a purported aspie here. never adjusted to the news, never became blase about it, as mothers at the support group i attended did. kids do outgrow the diagnosis. and all kids can become violent. just pointing out the similarities rather than the differences.

try to find a support group for aspergian families - if there isnt one, ask your local county mental health office if they will spare the space for one, and at least pay to advertise it.

also, not sure if this will help - my son used to be alone on the playground at recess. quite heartbreaking to see, 100 feet from the other kids, alone. i went to the school and played kickball with the other kids. i left my boy alone, and i played with the other kids, joked, tried to make them laugh. after some time, my boy migrated. he didnt want to play, but he kept score. participated a little bit. and then more and more.

he's different, and he's more naive, and smarter. he got in a shitload of trouble, and still struggles with school. but overall, pretty engaged with his peers. still stands out, though.

just some thoughts, and a great big psychic hug. it is scary, not knowing your child's future. i do believe tho, this whole "sometimes they marry" is overblown. i think they OFTEN marry. least as often as anyone else, in this day and age. they just arent playboys in the meantime.

fingers crossed and good thoughts going out to both of you.
Thinking still ... of all the words shared here.

Thinking of your son, the still hoping one ... and wishing that words here could share with him ... an extension of his ... your ... our ... hope ...

Thinking of the support you offer ... and of love ... given because it can not be held back ...
Thinking of ...

"They love no less, they feel no less, just their boundaries shift, are vague and unfamiliar.
We can teach them the boundaries."

Thinking of one who found ways to smile ... to understand humor ...
her father's humor ...

Thinking of so many who simply need to believe ... to know that they are loved ...

and hoping that somehow ... all who need to know ... may know now ... how terribly loved ... they are ...

Somehow may all of us be reading and thinking of your words ...
I missed this until just now... I'm reading with tears in my eyes. Good Lord, if OS had been working properly, this surely would have been on the cover. It still needs to be. This is so touching, and so important.
Seer sent me here.

She's right. If we still had RP open, this would be there.

I can relate to this on two levels.

The first is the reaction to the crime. If you're part of a real minority, you always pray the criminal wasn't one of yours.

The second is the isolation. I lost a son with cerebral palsy a year ago. Didn't really have friends who were peers except for a long distance one, and he also has CP. my son went to a special needs camp mainly for people with CP and Downs' but also sometimes Aspergers. One of those young men is on an occasional MTV series called How's Your News? which originated at camp.

Thanks, Seer
I can forgive the children. I have a harder time forgiving he adults who let it happen.

Excellent post reminding us all to take a little more time.
Very moving from a real Hero. R
I try to pay special attention to the children who are different, mostly because I was different but also because they need me too. I hope by writing this you have enlightened many more, many more who will stop and take the extra time needed to help...
Thank you for this. Writing from your heart to our hearts. Thom
I hope someday mental illness will be looked upon with the same sympathy & understanding & desire for a cure as physical illness is, instead of there being such a stigma that we have to use pseudonyms & pretend everything is okay, all the while we're dealing with pain & violence & horrific sadness because we have no place to go. Thank you for this post! It is a real eye-opener & deserves reading by a large audience who could maybe learn to be more understanding & not just write off or judge the socially awkward kid in the corner, but instead reach out & pay attention.