My Photo
Name:
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, September 14, 2007

 

Why Friendship Can Be Difficult -- A Parent's Point of View

I am the kind of person that has a couple of really close friends. Unlike my husband, I will not likely have the big parties and reunions, although I enjoy them when I'm in the mood. I'm just not that good at keeping an array of friends like a financial portfolio, and I cannot spread my emotional self out too thin. No, I have one friend who I can really talk to and be myself.I have others who I can dig down deep with -- usually those "artsy" types. Others have come to me by virtue of marriage, and my other ones, by virtue of the work I do now -- in writing and in autism. I am like many of the friends I have -- not purposely snobbish or selective -- but simply wanting to enjoy myself, be myself, and sometimes, dig down deep. I am quiet and private, and in many ways upon reflection, think I am somewhat reserved like my son Adam -- carefully evaluating people to see if they are safe. After all, our lives are different, and one has to be careful not to expend too much energy on those who we have to continually explain "autism" and disability to. I mean, one doesn't want to have to keep explaining to one's closest of friends. The years pass and we just want to go on living, thank you. While I do enjoy explaining when people want to listen, there are times we just want to be, without explanation.

Maybe this is why I am extremely sensitive to the language people use to describe autism. Some days I can let it roll of my back. I imagine most parents feel it -- days when we feel invincible and days when subtle bias -- spoken nonchalantly -- really gets to us. It is like when someone refers to their hyper-active child jokingly as "miswired" and then says it is "just like autism." This happened during a conversation I had last weekend, which was all about bias and how society views the disabled. Then suddenly, voila! Out of nowhere came an anesthetized remark, intended to close a conversation pleasantly, and not at all intended to insult.

It puzzles me further how some autistic people refer to themselves as "miswired." I mean, where do the references come from if not from non autistic people and the scientists who theorize about autism? How much does the way our medical community influence the way some autistic people view themselves and theorize about their own autism? It makes me incredibly uncomfortable as I envision Adam listening to such references at future family functions, Barmitzvahs and weddings to come -- the terms that media and medical professionals erroneously and carelessly use to describe the nature of autism, which then becomes the way that others come to think of Adam. These can either be subtle or blatantly insulting references that, if you are autistic and you don't work to build your self-esteem, might just undercut you.

It is really time to address the use of language in every situation. It is something I am committed to doing, no matter how tiresome, except it is important for others to know that it can be. It is easy for me to exemplify it in my community -- I can use examples like, what if someone was having a nice conversation and just dropped in something like 'all Jews are good with money?' Instantaneously, if you are Jewish, you feel the bias. You feel that everything that was positive and equal between you, has evaporated. While you could stand by and "educate" the person who has just said something insulting, you consider what you might gain or lose from it. In other words, is it worthwhile or just going to zap you of your energy? Or, will this person understand the point that is trying to be made? Finally, how can you say it so that it doesn't make the other person feel they are under attack, despite the way the comment just made you feel? These are the down-and-dirty details (and hazards)of everyday activism.

Fortunately, my "circle of friends" has come along the journey with me, and I am richer because of it. And despite my reservedness, I think I have made more dis-abled friends who have taught me to accept my need to be (at least in public) reserved.

For some interesting lists on politically correct language visit www.sideroad.com. . Here's an argument against the use of politically correct language, as the author suggests that to just use the language only in order to not appear ignorant, is also missing the point.

I tend to lean in the direction that if it's insulting to the group of people the term refers to, then the term is inappropriate.

12 Comments:

Anonymous mcewen said...

When you describe it like that, it does sound so dreadful, and I'd have to admit that I'm guilty as charged.

I don't think I do it in a mean way, more of a shorthand as it's so difficult to explain things to people who are unfamiliar with autism.

I think perhaps it's a form of defense when people are drawing the wrong conclusions about our children.

In real life I don't often take the opportunity to explain as it takes too long and no-one is sufficiently interested.

I'll try and be more careful.
Cheers

12:00 PM  
Blogger Estee Klar-Wolfond said...

I too have been at fault for saying generalized things about whatever the case may be and I'm sure I've said insensitive things without even knowing it. I do think that many sensitive, intelligent people end up saying insensitive things because they simply are not aware. What else can we expect if the media and our scientists insist on using terms like "miswirings" and "genetic mutations?" (Just for reference "atypicality" has been an accepted word).

I run a certain risk by writing things like this here, but I really want to be honest. I'm not a mother in denial of challenges and differences. I am a mother so fully aware of them that perhaps if we talk honestly about how things feel to us, it might help others see. Everyone is sensitive when it comes to their children. It is definitely something we can ALL relate to.

Further, no one should be afraid to ask. I rather like it when people don't know, that they ask me about it. I can talk, but people have to also open up to listening.

I think, though, it's important to realize that people also just want to be accepted and have a good time -- as they are. I can't describe well enough here, the right and the wrong times to ask about something, because that's too difficult to determine. I guess you just have to be aware of all these things and that may lend itself to "being sensitive."

12:15 PM  
Blogger Joseph said...

How much does the way our medical community influence the way some autistic people view themselves and theorize about their own autism?

It does, especially those of us for whom science is an area of interest.

Not all science is good science or conclusive. Plus it's important to realize that facts are facts, but the construction of reality based on those facts is cultural.

As far as wiring goes, it's a metaphore. What one person sees as miswiring to someone else could simply be different wiring.

1:50 PM  
Blogger farmwifetwo said...

I have learned to ignore them.... and using short-hand defn's gets the point across that something is wrong b/c like Mcewen says, the average person truly isn't interested.

Luckily our families (mine and the dh's) don't even worry about it. I've never even been asked except a "how's things going??" and I give them the short answer "school is going well etc". B/c that's what they expect if my children were "NT". I don't wish to know all their ailments and they don't wish to discuss mine or the kids'.

As I wrote to my Gr 3 son's teacher "My son doesn't know he's different than his peers, so I need your help to teach independance" - bringing homework home etc. And why should he know. The kids don't notice it, they are use to his quirks.

I'm just going in circles. I have a book on "The Miller Method" at the moment I am reading. I got the method from Ralph Savarese's book. He mentions it in a paragraph near the beginning. I picked it up since it was in the toiletting discussion which is what we're trying to get figured out here. I'm pls'd so far but like most books, it starts at the beginning and we're well past that stage... I need something in the middle.

S.

1:59 PM  
Blogger Estee Klar-Wolfond said...

Joseph said: "As far as wiring goes, it's a metaphor. What one person sees as miswiring to someone else could simply be different wiring."

Well, it warrants a look at "politically correct" language. "Mis" as a prefix means "wrong" "unfavourable" and "bad," "opposite or lack of" or "not."

I don't think that universally accepting this as a definition for difference in this regard is actually helpful, since it means the above.

We may understand that no harm is meant by the term "miswiring" or mis-fired neurons and the like, but words are not inoccuous. They DO have a literal meaning that which is important in the sense of how we think about things.

2:33 PM  
Blogger Estee Klar-Wolfond said...

Farmwife:

Is learning to ignore the same as actually ignoring? I think you know what I mean. It's what I meant by choosing who you engage with.

2:35 PM  
Anonymous farmwifetwo said...

I use to "sweat the small stuff" when it came to most things including autism. Most days I do very well it's just the rare one's when I'm over tired or had a long day with the "system" (medical/school etc) that I slip up.

But we live with it, not for it. We don't even discuss it 80% or more of the time. Unless something comes up with Dr's or school.

So why worry about using a short answer - I simply tell someone the youngest has a communication delay and that somewhere something isn't "wired" correctly but it's coming along. The thing is most people don't understand what autism is. Unless you live with it 24/7 you will never understand what autism is. There are as many variations as there are people on this planet.

So, don't sweat the "short answer". Most people don't wish to hear the long one. Come of with a short explanation that suits you for those that you meet at parties and functions. And leave the indepth one for those people that truly matter in your world.

S.

6:31 PM  
Anonymous Elissa said...

I'm very sensitive and quite defensive in regards to the language people use with reference to my son, but like mcewen, I myself probably use the wrong language at times - often as a defense against negative judgement of my son. I guess we're only human, and I'm sure we all have the best of intentions.

5:23 AM  
Blogger Estee Klar-Wolfond said...

Elissa,

Only human indeed. I write this post not to criticize, but to illustrate what it feels like, which we can all relate to. I've been "in this" for about four years now. It is only human to feel frustrated some days and other days, not to "sweat it," as Farm Wife indicates.

While I see the inherent problems in language use, I also see that "politically correct" language does not solve the problems entirely either. It's only a small piece of the issue. One hopes simply that others will learn to become more sensitive, for Adam's sake...for all of our children's sake.

8:22 AM  
Blogger A Bishops wife said...

"I am quiet and private, and in many ways upon reflection, think I am somewhat reserved like my son Adam -- carefully evaluating people to see if they are safe."

This is me too in so many ways. So much of what you wrote here is how I feel...alot. Thanks for sharing this.

8:54 AM  
Anonymous -Brian- said...

Yes, language is, and has been very confusing for me (a autistic person) for over sixty years.

When other, especially medical professionals say that I "suffer from" autism, what do they mean? Do afro-americans "suffer from" black skin? Do gay people "suffer from " homosexuality?

The same could be said of the word "disabled". What does it mean to refer to another person as being "disabled"?

Often, I find, not just the language, but the basic philosophical principles to be more of a problem, which, in turn, leads to more language woes. Take, for example, the premise that either a person is "autistic" or is "non-autistic". Who is to determine that there is a "concrete" line between the two? Could not many (if not most) people on this planet be right down the middle (in what they use to call "no man's land") between the two?

The same goes for the dualistic approach between "abled" and "disabled". Surely, most of us are both, at times, and to classify a person as being on one side of the fence or the other (as a description of that person's life) is nothing but extra baggage for the person to carry, year-in, year-out.

It's like the colour television is before us (along with the stereo audio equipment), but we are still too stuck on the black-and-white screen (with the mono audio background), and cannot see (or hear) the panorama that is before us....

6:15 PM  
Anonymous farmwifetwo said...

Today we were at the Dr's and a man of about 45 chose to engage my son in conversation. I use "chose" b/c he started the conversation.

I watched for a little bit and got a look with eyebrows lifted. He'd noticed the speech patterns were not correct and my son had gone back to his habit of talking about roads like does when nervous.

I told the man "he has non-verbal learning disorder. It's autism's version of ADD." He smiled at me, I went back to my book, he went back to talking with my son. The short answer had told him yes, there was something different about my son and that's all he needed to know. Yes, I could have stepped in more but he and my son, needed to learn to talk to each other without my help.

S.

1:58 PM  

Post a Comment

Links to this post:

Create a Link

<< Home