Tuesday, January 22, 2008

A child is more than a label

The diagnosis of autism can be devastating for a parent at first. You share the news and people respond like its a tragic life sentence. A child begins to be referred to as the "autistic" son, or the "autistic" classmate. As if "autistic" completely defined an individual. I have yet to meet two "autistic" people that are exactly alike. As a matter of fact, I have met many people on the spectrum who are quite happy just the way they are. Autism isn't a life sentence, it's just another part of what contributes to who someone is. While I'm at it, can I just say that I'm getting sick of autism being represented by a puzzle. As if people on the spectrum are a "mystery" or have "missing pieces."

I'll stop now, just some random thoughts by a frazzled mother, on a rainy day...


farmwifetwo said...

I always use "HAS". Once upon a time I too used "is" but I try very hard not to fall back into that trap. With two boys so very different... it's "HAS".

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??


Anonymous said...

If you had a child that you believed was on the outskirts of the spectrum, would you go ahead and get the label/diagnosis? It seems that with the label comes a sense of limitations but without the label you don't truly know what you are dealing with. Our doc keeps telling us the label doesn't matter because the treatment would be the same. What do you think?

farmwifetwo said...

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...

Whenever I see anyone crusading against a label, I can't help but feel that they are actually reinforcing the idea that one has to be 'normal' (whatever that is) to have value as a person.

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.

Just my two cents.

Jen P said...

Hey Bonnie, nice to have you back. Thanks for this post and to those who left comments. I always struggle with the labeling. 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.

LAA and Family 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!

By the way, has anyone seen the latest tear-jerker video from Autism Speaks? I'm going to have to get on my soap box about autism and "devastation" again..

LAA and Family said...

I need to clarify regarding the video I mentioned. It is not from Autism Speaks. It is posted on whatkindofworlddoyouwant.com and it is entitled "Change Her World." Now, before you think I'm just the meanest person ever.. I have nothing against people voicing their opinion, and attaching donations to a charity is fine. I haven't watched all the videos of austistic children on this site, but I watched the one I mentioned plus a few others. For gosh sakes, a diagnosis of autism isn't always such an awful devastating thing! We need more hopefulness out there ! I also don't like Autism Speaks... guess I should do my own post about this! Just wanted to clarify my earlier comment.

Marita said...

Late to the post but needed to comment.

I don't think Autism is the puzzle. It is the jumble of services, therapies, etc that is the puzzle.

Trying to get everything to co-ordinate and happen at right time and in sync. I feel like I'm constantly juggling with one to many balls in the air.