Tuesday, November 19, 2013

How I would talk to my child about Autism Speaks

Every one seems to be weighing in on the Autism Speaks Op Ed piece.  I was going to avoid it, because I have mixed feelings, but reading so many opinions on it has got me thinking.  Basically, I think that those who were critical of Suzanne Wright had some valid points, but the responses  were extremely harsh. I also think by calling it 'misguided', 'inaccurate', 'mean-spirited' and 'nasty' they are dismissing people with severely affect children and telling them it is wrong to express what, for them, is reality. 

The question was asked.  “ What if your child read the op ed piece by Suzanne Wright?  How would that make him feel? “

The obvious response is “I would consider myself very lucky to have that problem at this point.”  But that doesn’t really answer the question.

So I’ll answer it as best I can.  I don’t know how it would make my child feel, but I would talk to my child about it. The following is a hypothetical fiction. It is not anywhere close to my current situation. I’m assuming if a child could read that article and feel emotion related to it, then they could also have a pretty in depth conversation about it.  Please don’t nit-pick at the details.  I realize there are several reasons it may or may not work with different people.  Although such a conversation would take a number of different directions, it may go something like this.

Parent: Did you read that article on the Autism Speaks website?

Child: Yes.

Parent: What did you think about it?

Child: It made me sad.

Parent: Why?

Child: They said that people with autism cause their families to split up and lose money.  They said that autistic people can’t look after or dress themselves.  They made it sound like our parents are miserable because of us.

Parent: That isn’t right is it?

Child: No.

Parent: Well, what the person who wrote that didn’t say, and she should have said, is that she isn’t talking about people like you. 

Child: But I have autism and she was talking about people with autism.

Parent: That’s true and she should have said that about all people with autism.  That was wrong.

Child: Well then why did she say it?

Parent: Well, her grandson has a different kind of autism from the one that you have. She was thinking of him and people like him.  She feels very sad that he can’t talk and he can’t write; he can’t tell her what is hurting when he is sick; he can make a few signs with his hands to tell his family he wants something, but he can’t have a conversation like you and I are having right now.  We’re lucky aren’t we?

Child: I guess.  But her grandson and I both have autism, right.

Parent: Yes, but the lady who wrote this was thinking about people like you, she was thinking about people like her grandson.  If she could get him to be like you she’d probably be very happy.

Child: Why do we have different kinds of autism?

Parent: Well, autism is kind of like the chicken pox.  Some people get the chicken pox and find it’s no big deal.  They get a few pox marks and a sore throat.  They stay home from school for a week and then they are fine!  It’s all over.  Other people get the chicken pox and they get very sick.  They get really high fevers for days and a zillion pox marks. They can’t sleep, they can’t eat because of all the pox in their mouths.  The pox are incredibly itchy, they take forever to go away and they are miserable.  They may even get big, huge scars that last their whole lives.    Autism is a little like that.  Some people have autism and it makes them just a little bit different.  Not necessarily  in bad way, just a different way; sometimes even a good way.  Can you think of a way that autism makes you a little bit different from other people you know.

Child: Well most people want me to look them in the eye when I talk to them, but I don’t like that.  I think that’s because of autism.

Parent: Right! So sometimes you have to tell people “I’m listening to you I just don’t like to look at people in the eye."

Child: Also, sometimes big noises really hurt me and no one else seems to understand why. 

Parent: Yes.   That’s why it’s so important for people to understand more about autism.  Then people will know to warn you about loud noises or they can make sure to control loud noises when you are around.  You’re actually very lucky that you can figure out what is making you hurt and you can tell people about it.   The lady who wrote this article probably feels very frustrated because when her grandson is hurting, she can’t figure out why.   Her grandson hasn’t figured out a way to communicate what’s bothering him and all the family knows is that he is hurting.  They don’t know why so they don’t know how to help him.  That would be very hard wouldn’t it?

Child: Sometimes I feel a little bit like that.  Like when I don’t know why someone doesn’t want to be my friend or when neat hand-writing is hard for me but seems easy for everyone else.

Parent: Yes, sometimes that’s because of the autism.  It makes you see the world a little differently from most other people so it’s hard to understand why they act the way they do.  Can you think of anything you like about your autism?

Child: Well, I can remember all the little details in movies better than most people.  I think that’s because of autism too.

Parent: Yes, and that’s really special.  But the grandson of the lady who wrote the article, he had more of the big, hard things and not so many of the special things about autism.   He really tries hard to learn, but he can’t dress himself, he doesn’t like to get hugs and he doesn’t have friends.  That makes his grandma sad and she wishes that the autism didn’t do that to him.

Child: Why is his autism different from mine? 

Parent: Well, we don’t know. That may be something that the doctors and scientists doing research on autism want to find out.  There is still a lot we don’t know about autism.

Child: But she shouldn’t blame her grandson for splitting up the family and losing money.  It’s not his fault.

Parent: That’s true.  She shouldn’t blame him and I don’t think she meant to.  She probably meant to ask for help for people like her grandson so that the family doesn’t have to spend all their money trying to help him.  If they got the help they needed for their grandson he might learn some more things and then the family would be happier.  Do you think that family deserves to get some help?   I think she wants for the doctors and scientists to help her grandson find a way so that his autism is more like yours.    I think she loves her grandson and wants to help him improve so he can communicate and she can give him a hug.

Child: Do you wish that I wasn’t autistic?

Parent:  When your Dad and I were first told you were autistic we were worried.  We wanted you to be happy and we knew that autism can affect people in very big ways.  When you were little you hardly ever slept and you couldn’t talk.  Your dad and I took turns staying up with you at night so one of us could sleep.  But when we saw you learning and playing and doing all the things you do, we knew you would be okay.  We learned a lot and we love you with your autism.  We wouldn’t want you any other way. Your dad and I feel very lucky.

That’s what I would say….

Friday, November 1, 2013

No half marks for Social Skills.

No half marks for Social Skills.

“There’s your bracelet!” Naomi says as she points to the little girl’s bracelet.  We’re at the playground and Naomi is trying to make a friend.  The little girl gives Naomi an unfriendly scowl and walks away.  No big deal in the great scheme of things, but I want to run up to Naomi and say “Very good! That was an excellent way to approach a potential friend.”  I want to force the little girl to respond in a friendly way and take Naomi's hand.  Doesn’t she know that this was a really big step forward for Naomi and good behavior needs reinforcement?  No, I guess she doesn’t know.  

Naomi has autism.  Usually, she would follow another child around the playground and try to hold her hand.  “Stop following me!!”  and “Let go of me!”  are phrases I commonly hear as I watch the playground ready to run interference.  Naomi is usually undeterred and as many times as I’ve tried to encourage her to change her approach, she usually doesn’t.  Today, she did.   I’m proud of her!  It wasn’t even a scripted line, her language clear and appropriate and her tone was even pretty good.  Unfortunately, something about her approach didn’t sit quite right and it didn’t help her make a friend.   There are no half marks for social skills. The thing that comes so easily for most children is a real struggle for those with autism.  The toughest part is that when Naomi makes improvement but falls a little short of a typical child her age, the outside world doesn’t recognize it. She gets the same funny looks as she does when she’s completely off the mark.   Will she go back to following kids around?  Will she realize she’s on the right track? Oh, how easy it would be if this were a mathematics problem!  Objective, with a clear explanation of what you got right what you got wrong and why it is the way it is.  You can even get half marks! Social skills just don’t work that way.

Still, progress is progress.    A couple of years ago she would have run away from another child.  Now her interest has increased along with her courage. We’re on a longer, slower path here but we’re moving forward.   Most importantly, Naomi is not giving up!  She’s had a lot of kids brush her off, say unkind things  or even give her a push or a slap.  She doesn’t let it get to her and that’s why I believe that she will succeed in the end.