I was at an REI store last month for their winter clearance sale. The lines were long and people were trying not to show their impatience. My son was in the upper level, jumping up and down excitedly, making lots of noise, and just watching all of the activity. He loves that store.
Behind me there was a mom and her two children who were anywhere from age 7 to 10. The boy asked his mom what was wrong with that dumb boy up there? Why was he making all of that noise? Why was he saying "EEEE EYE" over and over again? "He's annoying! I wish he would just be quiet!" the boy carried on. (Yeah, my thoughts exactly about that lady's children).
"He has a disease," the mom replied impatiently. A disease? Can't you do any better than that? The son frowned.
"What kind of disease does that stupid boy have?" the son demanded. Oh. My. God. Did the mom realize that they were discussing my little boy?
"It's like, you know, maybe similar to Aspbergers like that Kenny has. A disease. Is this line ever going to move?" the mom huffed.
Part of me really wanted to turn around and gently explain to those kids that my son has autism and talk about what autism is. But they'd already really insulted my son and the mom didn't seem like she was in a mood for conversation. Also, would it have been appropriate for me to deliver a lecture to someone else's children? So I said nothing.
What would you have done? How would you briefly explain what autism is to children waiting in line?
I guess I'm feeling this
I guess I'm feeling this issue a little more intensely than I would have normally because I was "dressed down" recently by IEP Advice for using the word "martyr" in a post.
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Is there a point to taking
Is there a point to taking little snippets of my comments out of context and reposting them as has been done above?
Oh! I was wondering what
Oh! I was wondering what that was in reference to.
Although "disease" was not
Although "disease" was not the best choice of words, I don't think I would have been terribly offended by that alone. At least the mom was trying to guide the boy into seeing something more than "stupidity" and was, I think, trying to tell the boy that Wyatt's behavior was not totally within his ability to control. If she had used the words "medical condition" whould what she said have been offtensive?
One technical definition of "disease" is "A pathological condition of a part, organ, or system of an organism resulting from various causes, such as infection, genetic defect, or environmental stress, and characterized by an identifiable group of signs or symptoms." (source: Answers.com). One definition of "pathological" from the same source is "Of, relating to, or manifesting behavior that is habitual, maladaptive, and compulsive." Given this combination of definitions, autism could be, theoretically at least, classified as a disease. It is its "undefined" social connotation of "a disease being contagious" that leaves most people with an "aversion" or "negative feeling" about the word.
I think the scenario does illustrate how differently words can be understood by different people and how differently then we can all react to what somewhat else says. In a way, I think it also can be used to illiustrate one of the biggest areas of social difficulty people with autism have. Although difficulties in comprehending language do not constitute a complete picture of autism, people with autism and people without it can seem to be experiencing life on very different terms BECAUSE we understand a different social context for most of the words we use to communicate with each other. I still often need to ask my son HOW HE understands something he's said BEFORE I get upset about him saying something. Often it does boil down to a simple difference in how we each define the particular words we are using.
Of course, she may have given "disease" the same negative connotation as you and then she may have actually been intending to be insulting of Wyatt. In which case, a real dressing down for her poor attitude may have been in order. BUT, the possibility does exist that you MAY have just misunderstood her intentions due to an unfortunate choice of words on her part and IF she was really trying to explain things to her son so that he would cut Wyatt some slack and not just continue to assume he was stupid - well, you would have felt like a heal for chastising her. Because such situations are alway full of ample possibilities for misunderstanding - I usually just let them go unless the other person gives out a clear indication that they are interested in learning more about autism.
You're right, people do
You're right, people do attribute various shades of meaning to certain words. I guess I was hoping the mom would have said something like, "You don't go around calling people stupid. That's very rude behavior. That little boy probably has a disability. You wouldn't pick on a child in a wheelchair would you? I hope I raised you better than that."
I agree - your paragraph
I agree - your paragraph leaves less chance for misunderstanding. However, people who "use wrong words" can also be doing so because of a variety of disabilities including (but not limited to) autism. Things such as memory loss, strokes, and even just a basic unfamiliarity with a language can cause such things to happen. Cutting people slack for mistakes should be a two-way street. I guess I'm feeling this issue a little more intensely than I would have normally because I was "dressed down" recently by IEP Advice for using the word "martyr" in a post. She took offense when I had no intention to offend. "Martyr" is one of those words that has alot of religious-type baggage, but it also means simply "One who makes great sacrifices OR suffers much in order to further a belief, cause, or principle." It hurts my feelings to be misunderstood - and it hurts to watch my son going through life being perpetually misunderstood because he is likely to use words innocently that have such undefined social connotations.
Here is a link to an article that discusses "contextual competence" and autism:
http://www.info-metaphore.com/articles/nerlich-contextual-competence.htm...
It is hard to know what to
It is hard to know what to say... I like the idea of making up little business cards to hand out... Saying something like If you are ignorant about autism, dont bother trying to explain it to others... and give a link to either wiki or webmd, or even Autism Speaks...
maria I have been in that
maria
I have been in that situation before and basically done the same thing. I later wondered what I SHOULD have done. I'm generally a person who avoids conflict but I also have a very strong defense mechanism when it comes to the well being of my children (like most mothers).
Very recently we were at a family gathering - my husband's cousins house. Between his three cousins, there are 11 kids between the ages of 16 and 7 so you can imagine the chaos. There tends to be at least 2-3 "mean" ones in the bunch and that is true of this bunch. The same two kids have been mean to my son on several occasions, mocking him and calling him names (unaware that I was in earshot). On this particular day, I was really aggravated but did not confront the kids. Instead, I told my mother in law what happened and she was so angry that she immediately went to those kids and confronted them and told them how hurt she was. Needless to say, my mother in law became my personal hero for the day.
After having time to think about it I realized that I should have just rationally explained to these kids that my son has autism and that he is different than them and that they should never humiliate anyone who is different that them. I don't know if their parents have said that to them but, whatever.
Not too long after that, I had to have a similar conversation with my nephews and niece. They have never mocked or humiliated my son but they don't always understand his reactions to things so I had to explain to them that his has autism.
I wasn't sure if I should have that conversation in front of my son so I did it when he was not around. I don't want to make him feel inferior. Do you think that was right? I don't know how to handle this stuff either...!
Next time think of it as a
Next time think of it as a captive audience. You're not just teaching these rotten kids that are being mean.... you're
teaching their parents and they better learn coz guess what?, there's gonna be more of and more of these children in
their lives!!
Being that this has happened
Being that this has happened to me before I'm telling you what I have done. I have in the past turned around and tried to explain to the parent as well as the child whether they liked it or not. The reason I felt I did this was because they hurt my feelings by speaking about my son in the first place so I didn't really are if they were annoyed or anything I was gonna say what I wanted to say. Sometimes that helped. Once I flipped out on a mom about he need to teach sensitivity and tolerance to her child. This embarrassed the mom and I felt good. But in the long run I felt bad because you shouldn't respond to something negative with a negative.
Gladys Christina Ewell M. ED
Special Needs Advocate & Consultant
That probably would have
That probably would have been a good time to hand over one of those TACA cards that is the size of a business card, but I got rid of mine because I never used them. Just when I could have used them! And then when I was in the situation I was angry and flustered and couldn't organize my thoughts quickly. You know, it's the classic thing where you later think of a million things you could have said at the time.
As you know I've been in
As you know I've been in similar situations but not as bad as that you poor baby. This is what I would say., loud enough for
others to hear but not screaming. "MY son isnt dumb, he has autism. THIS IS AUTISM." And then I
would suggest that those within listening distance research autism on the computer... and I would hold my head up high.
Use those situations to help enlighten those around you. Puff up your chest, dont feel embarressed.
I like your idea, Cindy!!
I like your idea, Cindy!! And it's all positive, because it is teaching others about autism, whether they want to learn about it or not.
I have a horror story for you:
I used to do speech tx in a middle school, 3 years ago. I accompanied 2 of my students who have autism to home arts, like cookiing and sewing. One day I was in the cooking classroom by myself, taking pictures of the utensils so that I could make them into picture cards for my students to learn vocabulary. The cooking teacher started complaining about how awful my students were, how they pulled the whole class of "normal" kids down, held up everything, and generally depressed everyone. "No one should have to look at those kids" she vented. "They'd be better off in an institution."
I was shocked, and told her that because autism is now an epidemic, we had better get ready to help incorporate the kids with autism into our communities because autism is here to stay.
"You watch," she confided, "These kids will all be put away eventually. They don't belong in our schools."
At that point, I couldn't hold back any longer. I told her that my son has autism, and I would do all in my power to make sure he never set foot in "her school" because I knew he wouldn't be welcome. Now it was her turn to look shocked, and she stammered that I had misunderstood her...how could I have misunderstood her? She had told me quite clearly how she felt about autism. I had to work with that teacher for another year, and she never apologized, or even looked at me again. We have basically ignored each other since then. The wierd thing is that my son did go to the middle school where she taught, and we discovered that he loves cooking, so he took her class twice a year, instead of once like the "normal" kids. Perhaps his being in her class, along with his autistic classmates, and his love of her subject, helped change her heart a little. I should pray for her, but I still want to clock her one!
Sher
How horrible. I say clock
How horrible. I say clock the b*tch THEN pray for her lol.