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Sunday, February 26, 2006

To Label or Not to Label

I'm doing it again...

I got to responding to a comment, that was rather off-topic, in my usual verbose fashion and decided to bring it to my own blog instead, which is out of deference to Zilari at Processing in Parts. The discussion was about what is appropriate to teach children with autism from the perspective of an individual on the spectrum. As the parent of three children with autism, who has not had much opportunity to converse with adults who've "been there, done that" this was an invaluable opportunity for me. So much so, that I couldn't help but join in.

However, this comment takes us a bit off-course from that discussion:

I really like what Estee said at one point in her blog to the point of, "Nobody has 'special needs' -- it's that everyone has 'individual needs'." Recognizing this is definitely a step in the right direction. :)


And so, here we go...

I certainly understand, respect and empathize with the resistance to the use of ANY labels to describe oneself and/or one's children. ALL labels, no matter how inherently benign, can be used in a derogatory manner by those who choose to do so. And thus, prejudice is born. (At least, that's one way of looking at it, though I hold to the notion that the prejudice comes before the choice. But that's an irrelevant distinction for this discussion.) But, using a label in such a manner is a choice. I thrive on my intelligence. I embrace it. I cherish it. And thus, when people use the word "nerd" to describe me, I slough it off. If they feel my intelligence is a reason to attempt to degrade me, that's their problem. I don't care and I do not feel degraded. People may choose to label my intelligence in a negative fashion, but I do not choose to accept their label and I do not let their choices interfere with my choice to embrace the label of "intelligent."

In the same light, I embrace my children's autism and some of the labels that go along with it. Of course, I disabuse anyone who intentionally uses labels to degrade my children, because I know and can "prove" that my children are not inherently inferior to the children of anyone else. These linguistic abuses, however, do not deter me from choosing to use the language that I feel bests describes my children and/or their needs, because I've found those descriptions essential to meeting my children's needs. Especially when it comes to getting my children's needs met by a person who does not have an intimate understanding of the obstacles my children face under certain circumstances.

My husband, however, is of a different mind-set. He hates labeling in general, and especially hates the label "autism" or "autistic". He feels that this label is NOT descriptive of anything, because autism is a spectrum disorder that is not scientifically explained. Autism, as the word is used by medical professionals, is a group of symptoms. Nothing less and nothing more. The cause is unknown. The prognosis is unsure. The meaning can often be irrelevant.

For my readers who are not familiar with autism, I'll explain. The word "autistic" is used to describe someone who exhibits a set requirement of these symptoms. Essentially, autism is not a medical condition such as cancer. There's no empirical test that's currently available. It's not a disorder of the body or the brain, as per "normal" terms of disorder. Being labeled "autistic" means no more and no less than that you were assessed for a set of symptoms and it is the opinion of the professional(s) who performed the tests that you exhibit enough of the symptoms to meet the definition. It is, essentially, meaningless as it does not give one the necessary information to address the situation. Knowing one autistic individual does NOT prepare you for meeting another autistic individual, as the two can be so completely different that the knowledge you learned from one does absolutely nothing to help you adjust for associating with the other.

To stick with the cancer comparison, it would be like someone who's familiar with colon cancer thinking they know how to treat leukemia by doing the same things. It's absurd. The difference is, of course, that with cancer there is empirical evidence of malfunction. That's not the case with autism. We know that individuals with autism aren't "normal," but that doesn't necessarily mean there's something wrong. And that distinction is why many people resist using the label. For some, any medical label automatically implies that there's something wrong, whereas I look at autism as a weak description of what's different. It helps to know that the fact of the matter is that most people have some of the symptoms of autism to some degree or another: autism is an extreme of the normal human condition.

If you're noticing that my response to my sons' diagnosises of autism is atypical, you're right. I am not crushed by this. I feel no regret, no shame, no devastation here. My initial response was relief. Partly this is because it wasn't my fault, meaning I didn't somehow manage to irrevocably screw up my child before he even reached elementary school (which is the way some people made me feel), in fact I found that my child wasn't "screwed up" at all. More importantly, however, it is because these diagnosises led me on the path to understanding my children and myself.

I hate not understanding something I want to understand, and I desperately wanted to understand my children. Why did they scream, seemingly for no reason? Why wouldn't they eat regular food? Why did they strip off all their clothes? Why did they smear their feces? Why, why, why...? The label autism gave me the ability to find those answers, because it led me away from the how-to books that kept telling me it was somehow all my fault: I wasn't loving my children in the "right" manner. I didn't discipline them appropriately. I didn't stimulate them properly.

Though, in truth, those were accurate assessments, but for all the wrong reasons. I wasn't loving them in the "right" manner; I was expressing my love for them in ways that they couldn't readily understand. I wasn't disciplining my children appropriately; I was punishing them for trying to communicate their distress to me. And I certainly wasn't stimulating them properly; I was trying to fill their days with those activities that are better suited to neuro-typical children (and perhaps not even them), instead of meeting the sensory needs of my own children.

You could say, I'm grateful for the word "autism" for that reason, and use it as a tool to help other people reach the understanding I have reached. So, while I respect the desire, and the reasons behind that desire, of some people not to use labels, it's not something I emulate myself. The linguistic difference between "special needs" and "individual needs" has it's merits, and is certainly accurate, but if it doesn't increase understanding, then I feel it's counter-productive to my goal.

Ah, and now you see we're back on track...

I tend to use "special needs" or other labels to express myself, because I'm usually not expressing myself to an audience of people who've "been there, done that." They don't understand my children, myself, or our family dynamics on a personal level. They haven't lived through the trials (or the joys) of autism or other "special needs," so some of them just don't understand that it is not the same as their own experiences.

As I've said, understanding is a big thing for me. Because of that, I don't water down my experiences or the experiences of my children. I don't soften the blows of my life as a parent by saying it's the same as the life of the parents of neuro-typical children, because it's not. That's not to say that my children are inferior, they're not. They're just different. Neuro-typical children do not feel PAIN when their hair is combed, or their teeth are brushed, or their nails are cut. Neuro-typical children do not go into shock when entering Chucky Cheese's, because the stimuli overwhelms their nervous system. Neuro-typical children understand the difference between being angry and sad.

These are important distinctions. Understanding these distinctions have made the difference for me as a parent, teaching me how to help my children cope and excel with their differences. It checks my own expectations and behavior, making me a better parent for my children. Teaching other people these distinctions is important to me, because these other people may eventually interact with my children, or other children with special needs. It also opens up communication so that people can realize that ALL children (and adults), no matter what their differences are, have special needs and that this does not make ANYONE inferior, it just makes them an individual...which is what we all were all along.

So, in closing, I respect Estee's opinion and the reasoning behind it. I do agree that "individual needs" is a more apt description than "special needs," because we all have individual needs irregardless of our similarities and our differences. And I do understand that this word choice is used to attain the goal of acceptance. However, I am coming from a different perspective. To me, understanding is an essential prerequisite for attaining true acceptance and I've found understanding to be severely lacking in all too many people. Even from some people who accept my children as being equal and worthy individuals, because they accept all people as equal and worthy individuals, I've found a lack of understanding to exacerbate preventable problems and misunderstandings.

I honor the goal to obtain acceptance for ourselves and our children. I share that goal. However, my primary goal at this time is to broaden the understanding between ourselves and those who do not share our experiences. Both are worthy and important goals and together, united as people irregardless of our differences, we can achieve them for everyone.

Correction:
The statement:
I also like to say that there is really no such thing as special needs, but "individual needs" and every living, breathing thing has "individual needs".

This statement was made by Squaregirl as a comment on Estee's post.

18 Comments:

At 2/27/2006 9:59 PM, Blogger Zilari said...

Hi...first of all, Squaregirl corrected me in a comment (rightly so) and indicated that she had actually made the comment on Estee's blog regarding "special" vs. "individual" needs. Just thought I would mention that for the sake of accuracy.

I completely understand with what you are writing here...and I am also in agreement with you about the "label" factor. I have no problem describing myself as Asperger's, autistic, etc. I don't find any shame in it any more than I would be bothered by being called female (which I am) or short (which I also am). Using an accurate term to describe a fact is something I have absolutely no problem with.

Regarding your take on "special needs"...I also think it's just a matter of word choice, and that "special" and "individual" could be used interchangably. I also recognize that, for instance, my needs (i.e., to work most productively) differ greatly from those of the average person. I need to shut out most sound. I need to not have any non-work-related conversations while working. I need to avoid multitasking as much as possible. I need to keep to a routine. I need to write everything down. I need to look away when people talk to me if I want any chance of actually processing what they are saying.

To deny that this is different from what might be expected of a person's needs would be silly. It is different, and in order for people to understand why these are real needs and not just weird wanton demands generally takes quite a bit of explanation. This is where the "understanding" factor that you are talking about comes in...helping people appreciate that due to differing needs, sensitivities, and perceptions, you (or your children, or me) cannot just do things the "standard" way.

 
At 2/27/2006 10:34 PM, Blogger Stephanie said...

Thank you, Zilari. :-)

I'm sure, for what I've already read, that you are good at your job, not only "despite your differences" but also because of them. Right now Willy is going through an "I'm not a boy...I'm different" phase. Which we respond with "You are a boy, and yes you're different. We like that you're different." or something similiar.

It can be difficult overcoming the desire to fill other people's expectations, but in the end deciding what's important to oneself and filling those expectations can be so rewarding that it makes you wonder why you tried so hard to meet the expectations of people who don't really care about you. At least, that's the way it worked for me!

 
At 2/28/2006 3:31 PM, Blogger Estee Klar-Wolfond said...

You have articulated this so well...better than I did.

I agree with the way you stated things here. Language always serves functions and I often struggle to find it to build those bridges of "understanding."

A long time ago, when I started writing my blog I said that I named my blog "joy of autism," because my son gave me such joy and it wouldn't be a term typically associating with autism. I also said that acceptance "doesn't come for free," implying that all understanding, all journey's, all joys, all wisdom, comes only from struggle.

Again, I admire the way you stated things.

Estee

 
At 2/28/2006 3:31 PM, Blogger Estee Klar-Wolfond said...

oops. I mis-spelled journies.

Estee

 
At 2/28/2006 10:13 PM, Blogger Stephanie said...

Estee,

Thank you for your compliments. Writing has been a dream of mine since I was a child, and now I often wonder if raising awareness for my children was the reason.

Oh, and btw, misspelling are totally okay here!
;-)

 
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