Autism

Not a Large Child

Published June 13, 2009 @ 01:34PM PT

Size 9 shoes
Dora's post Autistic adults are not large children not only has one of my favorite titles for what we've been writing here, but also carries a important message that can't be said enough. I'll revise the phrase slightly to "Autistic adults and teenagers are not large children," so it'll just about cover my own 12-year-old son. He is already adult-size and he's definitely an adolescent. Nonetheless, time and time again, he's still treated (often unconsciously) as a "large child."

People talk about him in the 3rd person in his presence as if he's not listening or as if he doesn't understand. Big mistake: It's vital to presume that he does. Even if he does not understand every single word, he can tell when he's being talked about, especially by people's tone of voice.

People try to physically guide Charlie to do something. If he's not responding quickly enough to do something, someone might take his hand and try to move it----in other words, they touch him, without asking permission, as if he "just doesn't mind." Unless it's someone that you or I know well, we don't expect or want another person to touch us without indicating this first, and neither does Charlie.

An article in today's Inforum (of Fargo-Moorhead in Minnesota) is entitled "Parents, teachers, peers team up to help autistic children at school" and mentions how the Circle of Friends program has helped students on the spectrum and students in general. (Also read guest blogger Emily Willingham's discussion of the Circle of Friends program at her son's school.)

But what happens when autistic children are growing out of being autistic children? Are on their way to becoming, and being, teenagers and adults, and don't need---don't want---to be treated as "big children," but as the maturing, independence-seeking, individuals that they are?

I don't have any real answers to those questions; we are still trying to figure things out ourselves. But we do know, Charlie likes being around other people, being out and among the community, and why shouldn't he----he is an essential part of the community, as much as you and me. How to keep the circle alive, and expanding?

And yes, those are Charlie's shoes----(adult) size 9.

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Comments (9)

  1. Bonnie Sayers

    Nick wears a size 10.5 in mens, he is 14 and Matt who turns 13 end of the month wears men size 8, but think he has moved up a size and time to shop soon - trying to wait so that they fit when school starts in Sep

    Posted by Bonnie Sayers on 06/13/2009 @ 07:02PM PT

  2. Kristina Chew

    We got Charlie a size 9 1/2 too as it's inevitable he'll need them before we know it.

    Posted by Kristina Chew on 06/13/2009 @ 07:06PM PT

  3. Reply to thread
  4. Casdok Shrek

    This gets to me as well. C is always being treated as child or ignored.

    Posted by Casdok Shrek on 06/14/2009 @ 12:35AM PT

  5. Regina Claypool-Frey

    Interesting. Thought about this came up in recently in the context of a discussion of an adult day center that was furnished like a preschool. Another example I recall was of a 15 year old being taught a game that would clearly be played by a 3 year old when there are more age-appropriate, yet similar, games that could have been trialed to teach a leisure activity.
    I believe sometimes there can be an overboard of "normalization", but in those cases even attempts of more age-appropriate activities and materials had not been probed.

    I see your point about being more thoughtlessly physical than one might with an older typical kid...and thinking about what and how we talk and boundaries. As my daughter is clearly growing into a young woman, I often think about this and how despite challenges, she has her own person and dignity which should be respected and at the least acknowledged.

    Posted by Regina Claypool-Frey on 06/14/2009 @ 04:01AM PT

  6. Elise Butowsky

    As a parent of two aspie boys who are teenagers, one of whom is in college, it is very important to balance their immaturity with their age appropriate need for independence. It is also very important that the schools remember that they need to be given independence and not to be treated like little children.I had to get after the school this year because they were patronizing my younger son and not holding him to a proper standard. I hate it when they pat them on the head and say "poor little boy with autism." I had a mom-fit and everything turned around.
    The problem with social issues is that when they are younger you have Circle of friends or counseling groups (middle school) but in high school there is nothing. In fact we just found a group for my college level son, and it has adults in it as well. It is a new movement to fill in the gap for these children. I suggest that if you have a therapist maybe that person can actually start a group for them. The therapists like to say its the age, I say its because they have no experience with this age group having ASD and don't really know what to do yet, so they choose to do nothing thereby leaving us to wander and our children out in the cold.
    By the way I have my own blog Raising Aspergers Kids, from PDD to aspergers to A's in College. asd2mom.spaces.live.com
    Check it out, see if it helps  and lets discuss

    Posted by Elise Butowsky on 06/14/2009 @ 09:29AM PT

  7. Jen Rosenblum

    I work with a preteen, about a year younger than Charlie, whose mother treats him like a little kid. It drives me up a wall. He's 11, he's not cute, he's handsome. It wouldn't be cute to buy him a game intended for three year olds that has no educational purpose. I can go for it if there is an educational outcome to it, or if we might start with this easier version and move him along to a more adult version, but not just because you think it's cute. Oh, and it wouldn't be cute to send the same type of thing to his classroom. They're all abou the same age. It would be cute to send it to the classroom with the 8 and under kids.
    You wouldn't have kissed and hugged your typical son at this age in public, and it's not cute to do it with your son who has autism.  It's not cute or appropriate for anyone to be doing that with him in public at his age, and it some people's opinion, public displays of affection are never appropriate. Either way, it won't be appropriate by any measure for at least another 5-7 years.
    Last, I never realized just how annoying it is to talk about someone like they aren't there when they are in the room until a parent of another client did it to me, and I was actually a part of that conversation. It took everything for me not to walk out in frustration, and wait until myself and the third person had left to say something to him about it. I never realized it until it was done to me, but I think perhaps some people need to have this done to them to get the point across.

    Posted by Jen Rosenblum on 06/14/2009 @ 06:35PM PT

  8. Kristina Chew

    I know I must say some _very_ annoying things to Charlie. (Mom habit; I keep saying to myself, just remember how you felt when your mom said that to you when you were 11.) Charlie is not interested in lots of physical signs of affection lately which strikes me as developmentally appropriate for his age----what 12 year old boy with a swagger wants a hug in public from mom?


    We have a very hard time convincing people that Charlie does _not_ like to be talked about in the 3rd person. Maybe part of sensitivity about autism and disability training should include how it feels like to be talked about in the 3rd person, while you are right there.

    Posted by Kristina Chew on 06/14/2009 @ 09:55PM PT

  9. Elise Butowsky

    I used to talk to my younger son like he was alittle boy when he was about 11 too. Then one day the school nurse whom I had know for years basically told me to quit. That I was embarrassing him and it would not help his social integration. It was one of the best things anyone has done in recent years I was really not even aware that I was doing something wrong and unhelpful. I then began to keep my eyeout for things like this.
    It can't hurt to tell that mother that she is not helping her son. As long as he is cognitively developed there is no reason he should be treated like he is intellectually disabled. Preteens do not like to be thought of as cute. If she doesn't listen to you then you have tried to do what is right by this boy and if she does then you have helped the child. As far as school is concerned you should point blank tell her that these children are adolescents and that they passed the cute stage alongtime ago and that it would developmentally improper to bring such games into school.

    Something tells me that this mother has more issues than her son's autism.

    Posted by Elise Butowsky on 06/15/2009 @ 05:16AM PT

  10. Reply to thread
  11. Elise Butowsky

    My children were never big on physical affection and now its even less. But they like their backs scratched.  Sometimes boys are really not demonstative and it has nothing to do with the autism. I have found that that becomes the question as they age, what is age appropriate and what is their autism.
    As far as people are concerned, I tell it like it is. I am not a shrinking violet and don't really tread lightly sometimes when it comes to my children. If the person gets embarrassed then its what they deserve. If they don't listen to you about Charlie, walk away and take Charlie with you. Tell them that when they learn to talk to CHarlie with respect you will continue the conversation. I have done this with family as well as strangers. It works.

    Posted by Elise Butowsky on 06/15/2009 @ 05:28AM PT

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Kristina Chew

Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.

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