Saturday, January 26, 2008

Labels Part Two

Wow, I had a lot of great comments on the "autistic" label. Here are my thoughts...

Sherri said, "As for the puzzle pieces I'm not so excited about it. I'm still in awe about the ease of learning in one area... and something that to me should be very simple to grasp... is so very difficult. Yet, the difficult is easy. HUH??" I'm right there with you... How can literature be so hard and geometry so easy??? BTW Sherri where are you? I wanted to visit your blog and the link I have doesn't work anymore!!!

Anonymous asked, "If you had a child that you believed was on the outskirts of the spectrum, would you go ahead and get the label/diagnosis?"

I could answer this question, but Sherri (who's blog I love but can't find) gave an excellent response, "The label is necessary for services and IEP's in school's. The eldest actually has Non-verbal learning disorder.You can't get treatment, speech, OT, IEP's etc... without the label. And just b/c at a young age it doesn't matter... it will when they get older and social skills, behaviour, language etc become an issue."

Katherine said, "Shouldn't it be ok for someone to 'be autistic'? If not, the problem isn't the label, it's the stereotype. Changing the label doesn't fight the stereotype, it only reinforces it. "

Of course its OK for someone to be on the spectrum. The problem is when they are defined by it as if one word sums up who they are... For example, Dr. Temple Grandin is a Professor, Bovine expert, excellent speaker, and she has autism or is autistic. See the difference?

Jen said, "I know that his diagnosis "label" is in his best interests for school and in later years, but when we have good stretches it makes it really hard to label him. I almost feel like he's "cured" even though I know better than that. Those are the days I get caught off guard."

I still get caught off guard too...

Laa said, "I actually prefer to describe my son as "autistic" rather than say he "has autism". The former is just an adjective to describe him, the latter sounds like a disease to me. He doesn't "have" anything, that's just the way he is!"

Interesting look on things, I'm going to have to think about that for awhile... This may be fodder for another post...


Maddy said...

Great questions, fabulous answers. So glad to see that there is such a vast plain of common ground.
Best wishes

Casdok said...

Yes it is interesting and as my son grew older my views on some of these topics changed.

farmwifetwo said...

I could write a "cured" book to with my eldest but it wouldn't be true b/c autism isn't cured... it's lived with, learning to cope with, learning to talk, social skills, behaviour skills, education...

Just b/c he looks and sounds "normal" he still very much has autism. And it shows regularly if you know what it is you're looking for.


The Glasers said...

I think that people with autism and autistic people often have their own, diverse views. I usually defer to what the individual prefers and that's the boundary I try to respect.

In my case as a homeschooler, lone ranger, we have not had services since we left the school system twelve years ago. We have not pursued anything special from the system, but just having a word (autism) gave us a wealth of information and ideas. It was not enough because another phrase (syntactic aphasia) is more explicit on what we are seeing now. When she was younger, a more accurate word would have been full-blown aphasia.

I do not care about cure. But, I do want Pamela to have as many doors open to her so that she can choose one of many. When she learned to use the potty at age 6.5, that opened doors that might have been otherwise shut. When she learned to read and write, that opened even more. Now that she is improving her ability to speak for herself, even more doors of possibility.

Her little quirky behaviors (rocking for joy, running a victory lap, giggling, etc.) do not bother me because they are just how she expresses her feelings. I am not trying to stamp out personality traits, but I am helping her to be more functional in the world so she has the chance to be her own person.

Bonnie said...

"I am not trying to stamp out personality traits, but I am helping her to be more functional in the world so she has the chance to be her own person." So well stated, I couldn't say it better.

S said...

Bonnie, I emailed you at the addy listed on the blog.


Katherine said...

This was a great follow-up post, Bonnie. Thanks for continuing the conversation!

We could probably talk about the concept of 'labeling' and 'categorizing' people forever... after all, we all do it, with everyone we meet. Think about it... we relate to people based on the category they fit in. Then, as we get to know the individual, we can appreciate their uniqueness.

For example, just knowing that I am 'female' gives you certain insight to my characteristics and shared experiences, as you are also female, and have known many of them. Once you get to know me, though, you'll learn that I don't crave chocolate, disdain sappy romance flicks, and don't wear much jewelry.

During 2006, I spent the year as a missionary. That was an extremely interesting label to wear. In the US, I was put on a pedestal by my Christian friends. In Latin America, I was considered a celebrity. In India, I was warned to not even use the word, because in their culture it has sadly become synonymous with oppression.

I am not against labels, because in general they are helpful to establish context. We must always encourage each other, however, to not limit ANYONE to ANY label we give them. (Repeat after me... "I am an individual!" j/k)

Anyways, I was impressed with a recent post that Tony Myles put up on this topic. If you're interested, you can check it out here:

Katherine =)

ps - Have you seen that McDonalds quotes Temple Grandin in regards to their humane practices - with no reference to autism whatsoever?