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….
