Thursday, October 15, 2009

How to Win Friends and Influence People, The Autism Version

The first week or two of kindergarten, our son's teacher remarked with surprise that kids liked him. She said, "He has friends! The kids I've had with autism usually didn't have any friends."

That last sentence depressed the heck out of me, and while the preceding ones might sound like cause for happiness, I had been through this before. Our boy, cute and charming at his best, likes to start strong and then slowly burn his bridges.

Can you smell the smoke? Whoooohheeee. We thought the wildfires got out of control in these parts.

So. Kindergarten. The school wants us to have a class talk about autism. They want to read the children a book about accepting the friend with autism. It's a great book, to be honest, and I like it a lot, but I'm so not ready. The question, of course, is whether our Rooster is ready. All I know is that things are not going so well.

The little boy Rooster clicked with best the first weeks of school now says the Roo is mean, and that boy's parents agreed, vocally, on the yard before school one day in front of classmates and other parents.

And today? Today was a jab to the heart. Today my husband was home sick, so he couldn't take Roo to school, meaning Roo had to come with me to drop his sister off first at his old school before I could take him. "Mommy?" he says to me when he realizes we're leaving her there and he now needs to go to his new school across the street. "Mommy, I'm suffering." He has never used that word in front of me before, and when I ask him why he suffers, he says, "I want to go to THIS school, not my new school." I tell him he graduated from his little sister's school by finishing preschool there (knowing he knows better, but it was the best I could do in the moment) and that his new kindergarten is the right place for him now that he is five. He stares at his feet and says, "I'm ungrateful at my new school." Then, as I walk him to his line, the two children already in place there notice us coming and visibly slump. "Oh, no," they lament, "here he comes. I hope he doesn't push me today. Rooster, don't stand next to me, I don't like how you poke!"

Friends. We know that the Rooster wants friends, likes friends. He does not know how to try to have them, though. He hears these children speak to him and he thinks that they are attacking him; he doesn't recognize in any way his part in building their defensiveness toward him. And so when they greet him with suspicion and fatigue, his own defenses flare, and he starts off his day by yelling at them, making faces, living up to the worst of their expectations. The vicious cycle in every way.

I asked him today, "What does it feel like to have friends?" He said, "It feels loving." I said, "Do you have friends at school?" He answered no, because those kids are mean.

They are not mean. Nor is my son. By the time I left him in line, I'd smoothed things over, for the moment, through intricate social maneuvering, through distracting, deflecting, through humor. They are ALL good kids, cute kids, special kids. They are so LITTLE, yet suddenly they are also getting so big, too.

We aren't ready to give our Rooster the word Autism yet. And so I'm not ready yet for the class to read the book about it yet either. Instead, I decided to write a letter to the parents. I've never tried to keep our diagnosis a secret from anyone, except I guess maybe in a way from the Rooster himself. I realize by telling the parents in the class makes me run the risk that the kids will use the word against him at some point, so maybe it's time to talk to him directly. J and I will be wrestling this for a while, I think, but we know that you can't unring a bell, and so we're proceeding with caution.

Today J has been reading about the Circle of Friends approach, wondering if it works in kindergarten, and I've put in calls to our ABA team. We've started accumulating social stories, video resources, and joke books for Roo to give him a social "in." I've reached out to the parents of the boy who thinks Roo is mean, inviting them to come pumpkin shopping this weekend, but the response I got did not inspire hope. I've been reading Theory of Mind articles, and I'm talking to my boy about his "inner voice," and how to be a good friend. We're volunteering in every way we can at Roo's new school, and I'm a room parent. We're donating to fundraisers and selling wrapping paper and trying to build some community.

In other words, we're desperately scrambling, we're running scared, we're pulling out all the stops. We're trying to win friends and influence people, with autism on board. This, my friends, is harder than potty training. And, like potty training, it's messy. And we are experiencing many unpleasant accidents. But we finally have the potty training thing mostly mastered, so maybe there is some hope for us yet. Do you think so?


redheadmomma said...

Yes, I absolutely think so. Remember that he's only just started at this school. Once the kids got used to Noah, they knew why he did what he did and things got much better. And so I'd encourage you to ask the staff to take every opportunity for them to get to know the Rooster. This doesn't have to be a big talk, it can just be lots of little talks about differences and how we are different. They would be so much more compassionate, I think.

I'm so sorry about your stress & hurt. Everyone wants to be accepted, and everyone wants their kids to be accepted. I know that being fully open helps us, but Noah is not cognitively as high as the Rooster, so if I told him he had autism, it would not (at this time) compute.

Hang in there - and know we love you AND the Rooster. He will find his niche, I know it.

jess said...

Oh honey. Hugs. Big hugs. I so get this. Every bit of it. I STRONGLY suggest looking into Social Thinking by Michelle Garcia Winner. It's a FABULOUS program (especially for a kid with as much facility for language as Roo!) that deals with all of this. The entire concept is based on teaching our kids to think in a social context - to understand that they can control the signals that they send to the rest of the world and why that matters. Email me off line for more info and hold your head high. It's early - very early.

Niksmom said...

Ah, love, there's ALWAYS hope.

I've read about several families who have had success w/Circle of Friends but I don't kow how old their chhidlren are. I think one was Michelle O'Neil (

Wishing I had practical personal experience to draw from to give advice or suggestions. But I've got love and belief...LOTS of that. xo

KAL said...

I agree with redheadmomma, it's still early. I think it's impressive that the teacher/staff wants to share with the class some of the rooster's challenges but I can completely understand your hesitancy to add autism to their lexicon. On the other hand, kids that young are often quite accepting once things are explained to them.

I think you're on the right track, though! You're doing all you can think of to help him. Hang in there.

Anonymous said...

Oh, this sounds eerily familiar. I try so hard to gently get C to understand that his actions, whatever they may be, have consequences. He just doesn't see his role in any of it.

I have no advice. Just understanding.

jen said...

Oh how I can relate to your discouragement friend. I am one to always count on hope - I think that ultimately, it does not disappoint us - it is what compels us & keeps us moving forward even when it's tough.

Keep on keeping on - the efforts you're making now will make a difference - it's not an easy road - we all just do the best we can....and your Rooster is blessed by the effort & determination that you give, even when it doesn't feel like it...

Sending hugs & blessings your way!

Stephanie said...

To go down the childish path, can I slap that kids parents up the side of the head? Please? I really, really want to.

jess said...

hey lady. i tried to leave a comment earlier, but it seems not to have gone through. soooo, if i'm repeating myself i apologize, but i wanted to make sure this got to you.

i HIGHLY recommend looking into michelle garcia winner's social thinking program. it's entire basis is to get our kids to think in terms of a social context for their actions and as a way of understanding others. it's FABULOUS and it sounds like EXACTLY what you're looking for. it also sounds like with rooster's facility for language and his ability to identify his own emotions, he'd really be able to dive right in.

and although this is a loaded topic, i will tell you why my husband and i made the decision to talk openly about autism in our home. obviously, everyone's situation is different, but ...

over and over again i've heard form my adult friends with autism that either they were incredibly grateful that their parents used word with them (one man said, 'it made everything make sense .. instead of just feeling like a freak, i knew i had a brain that worked differently, it gave me a reason for feeling the way i did) or those who say, 'i wish someone had said this to me earlier because i've had to fight a sense of shame about it."

my greatest fear is that my daughter would someday wonder why we had kept such a big part of who she is a secret.

anyway, that's not meant to be an indictment of any other way of thinking, truly - it's just the way we've chosen to go.

i'm so sorry that it's been so hard so far. i get every little bit of this post - been there, cried through it.

it will get better, it's early days. very early.


PBear said...

I second the suggestion for Michelle Garcia Winner's books. Kelly's teacher is using them in their social skills group, and the main focus for him this year is to start to realize that what HE does impacts how other people feel about him. I'm of two minds on this myself - right now it's really nice that he truly does not care what other people think of him - so he can stand on the stage after the band concert and wave like QE2 in a parade when they bow - or return to school the day after a meltdown without coming unglued that people won't like him - but he is actually enjoying having friends at this new school, so it would be nice to keep them (you think kindergartners are judgmental, try middle schoolers!)

As for telling him - I've told Kelly, and we've never tried to keep it a secret - he goes to a psych, and is quite clear that he has some issues that other kids don't have (and he's not really very happy about that) - and I always have articles and books laying around both from him and my classwork - but I don't know for sure if he's really internalized it, or if you asked him he would acknowledge that he has it. I figure he will in his own time...

graceunderautism said...

I clearly have been under a rock because I am just now catching up on a month's worth of blog reading.
I didn't see any updates on this so I don't know if you made a decision, but here is my 2 cents.

When J was in Kindergarten last year, he had a very hard time with friendships as well. He lashed out aggressively when he was overwhelmed or a game of innocent tag turned into a full contact sport. In class he had trouble with circle time when answers in "unison" were too loud.

His school is a mainstream school with a full inclusion plan in place. He has a 1:1 parapro and there is an inclusion specialist that overseas all the paras.

One day they took J out of class and read a story about differences to the class. it was not a book about autism. I too have mostly kept that word from him, only because he is a manipulative smarty pants and I'm concerned about him trying to "gain" from the word as an excuse.

Then they discussed with the kids some way people they know are different and then transitioned into things J struggles with (loud noises, too much action, having a conversation not a monologue, etc.) The inclusion specialist let them come up with ideas on how to address these (speak quieter, let him know the rules of the games, use common "scripts" etc.)

Things changed dramatically over the next few weeks. I even witnessed a circle time where he had his hands on his ears and the teacher reminded the class "we have friends with sensitive ears" and the class responded at an appropriate level.

One of the articles I read right after this was the statistics of how kids learn social skills better when their NT peers are trained to respond appropriately. If J made the leap to say hi to someone and they didn't respond or rolled their eyes he would get frustrated but if he says hi and they say hi, he might be inclined to ask how they are today.

Sorry for so long, should have just sent an email