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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Friday, July 14, 2006


An Example of Insensitivty

Yesterday, Adam had a play-date with a non-autistic friend from camp. Adam is enjoying camp. In the morning he watches and waits for the bus, and as it approaches, he jumps happily up and down, “There’s the bus! There’s the bus!” There is a wonderful melodic tone to his speech and the repetition, and I love to make songs out of the things he says and jump around with him.

He has made another best friend, it seems at camp, “M,” – a little three-and-a-half-year- old girl who has motor planning difficulty, making language challenging at the moment. Adam and M sit beside each other during every circle. M won’t go in the pool unless she is with Adam. M began tickling Adam and he giggled and tickled her back until they were entrenched in their own private giggle-fest. She touched Adam’s nose, and he touched hers, she touched his head, and he touched hers. This was the report I received from his counselors.

Adam is in a “regular” camp with a “shadow,” who stands back as Adam becomes independent. Adam needs little assistance now from her and during the school year -- we faded the shadow back to one day a week. It’s just that at camp, the teenage counselors do not know how to teach appropriately to any of the three and four year olds, and I’ve discovered that his shadow’s positive advocacy of Adam and all of his abilities, and meaning of toddler-speak in general, is teaching the counselors how to actually interact with him, and the others, in a positive way. I don’t think I expected Adam to enjoy camp this much. He has formed attachments with one counselor and his swim instructor, and of course, little “M.”

I could have been angry with the camp. Yesterday, the head counselor, also a “teacher,” came out and said that Adam was “crying for most of the day and she didn’t know why.” I felt singled-out and that the look on her face was that he was crying because he was autistc, a sweeping feeling that crossed me, and all the parents stared at me. When Adam’s shadow explained what had happened -- Adam had apparently bitten his tongue and was upset about it -- I marched back up to the “teacher” to say also in front of the lineup of parents, “Did you know that Adam bit his tongue which is why he was crying?” She indicated that she hadn’t been paying attention. “You shouldn’t made a statement that gets me worried without investigating the cause,” I said politely, but firmly.

The mother of “J”, who has the non-autistic child who came to play late yesterday afternoon initiated a discussion that her son “hates camp,” and that that same “teacher” did the same to her in the lineup of parents. The mother also felt stigmatized.

So, it isn’t an argument of prejudice against an autistic person, although I might have interpreted it that way. It was sheer insensitivity and lack of professionalism on the part of that head counselor. I have discovered that she knows little of this age-group of kids, doesn’t know appropriate activities for them, and is so busy being “head” that she doesn’t have time to interact with the kids.

In the meantime, my shadow is in there with a group of teenage counselors teaching them what kids want and need, autistic or not, it sounds much the same to me. Looking at all kids positively, with respect and dignity as little people with reasons and needs seems to be sorely lacking here, and perhaps is the problem with some teachers and institutions in the first place.

Assuming prejudice may be too easy. Accusing people of prejudice may even be deconstructive. We have to look at the context, teach the ignorant (ignorant as unknowing and insensitive), and act positively to achieve the goal of teaching and raising the self-esteem in all children.


Blogger Kristina Chew said...

Advocacy happens at all times and in many forms, indeed.

2:12 PM  
Anonymous Camille said...

A few years ago there was a mom who lived in the same apartment complex as I do. She had a nice family. Where we live is a mostly white community with loads of sometimes not so carefully conceals racism. Everyone here knows you can't say certain things about non-whites, but the non-whites feel the racism, just the same. It's all very hypocritical. I grew up here, it's a snotty little university town. Anyway, this mom was black and she had a seriously disabled child. The lttle girl looked odd, but I couldn't place her in a certain "syndrome," still, this girl had to have had serious problems from before birth.

But, the mom had been told that the girls strange behavior and sometimes lack of self control was caused by the fact that the girl felt that her parents had abandoned her in the hospital when she was in for a surgery at something like 4 years old. She was supposed to have 'reactive attachment disorder." The mom believed it. I was thoroughly not convinced and said, "Really? are you sure?" and the mom said, "Yes,...."

Anyway, I'd say this girl has a genetic syndrome and autism, hands down. She was in a special ed class in a neighborhood school. One day, the mom noticed that a white mom said something like, "Oooh, don't go near that girl!" or something like that within my neighbor's earshot.

My neighbor was crushed. She didn't get all militant about it, she was crushed... because she thought it was racism.

I told her. "I don't think the mom was reacting to your color, I think she was a bigot against disabled kids. She probably feels like your daughter's problem is contagious."

Suddenly my neighbor looked at the situation totally differently and said that I could be right about that. And she felt better. I guess it was an easier kind of bigotry to deal with.

I don't know what the white mom's problem was, but I really do think she was a bigot against handicapped people, more likely than that openly bigotted against black people, though it could have been a combination.

That family moved a few years ago. The mom said they were much happier in their new place in a nearby city.

It still makes me really mad that the parents had been told the girl had "reactive attachment disorder," and that it was essentially the parent's fault.

2:41 PM  
Blogger ballastexistenz said...

camille, I know several autistic people who were considered to have RAD at some point because they either (a) were adopted, or (b) needed surgery early in life.

3:42 PM  
Anonymous kyra said...

"We have to look at the context, teach the ignorant (ignorant as unknowing and insensitive), and act positively to achieve the goal of teaching and raising the self-esteem in all children."

amen to that, estee!

10:30 PM  
Anonymous Vidya Ganesh said...

Very well said Estee!!!.
And I agree with Kristina.
Autism advocacy happens at all times and in many forums.

5:54 AM  
Blogger Mom to Mr. Handsome said...

Thank God for your shadow! She sounds like an angel.


12:48 PM  

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