Monday, March 9, 2009

Early Diagnosis a Blessing or a Curse?

This post was inspired by blog hopping which ultimately ended up here at Autistic Aphorisms discussion of whether early diagnoses is a good thing. As one who has testified before my state government on issues related to autism, I have seen both sides of the coin. I think this is a discussion worth having.

You know, I remember what it's like to bang my head against the wall, both calling out for attention and trying to dull the pain. Well into my teens. Over time, I also discovered how such behaviors are interpreted by "normal people" and have learned better ways of getting my needs met. I've learned these things painfully and slowly, and with the advantage of moving faily often (a traumatic experience which I only endured because it allowed me mulitple opportunities to "start over," each time reapplying what I've learned). So it would have been better to be diagnosed with autism rather than awkward affect or whatever it was they told my mother because then someone might have helped me. Someone might have determined whether diet or environment has any effect on my processing, anxiety, and behaviour (it does) and whether behaviour modification and social skills lessons would be of use (they were). But those were things I discovered on my own.

And all aren't so able. If fact, I'm thinking specifically about the sunday school student I wrote about in the contact page of MarylandAutism.org. Everyone could look at her and tell that something was wrong. She headbanged, communicated in grunts, needed a strict routine and endlesss repetition to calm her. Yet no diagnosis of any kind for years. When she was diagnosed- I forget what it was exactly, PDD NOS I think, but that was a year or two before she passed away. After that, she made fantastic progress in a excellent school for "such children." 16 years of pain- some of which could have been eased with an early diagnosis.

But would that have really helped me and others like me? I doubt it. Had I been diagnosed as a child, there wouldn't have been much done to help me. I would not have been provided much in the way of "accommodation" (and rightly so, because there are children who can't even communicate- and I'd rather scarce resources be directed to them, not someone like me). And the bottom line is, the key thing for me was someone breaking through into my imagioned world and making me realize that there was more to life out there if I was willing to work through the anxiety, pain, and accept that others exist outside of (and independent of) me.

Actually, now that I think about it, I wouldn't have the job I have if I had been diagnosed so maybe I'm not qualified to even speak on this question!

Indeed, my life would not be where it is now if I had been able to hide behind a cloak of diagnosis, or been allowed develop the sense of entitlement that I'm noticing with some of the younger adults I work with. Its the feeling of "you have to deal with me- and accept me as I am- because I have a condition..." Unfortunately, the world doesn't work that way, and I think we do these young folks a disservice by perpetuating that feeling... yikes, I'm going to get flamed when I show up at the next aspie adults meeting...

Anyway, I've pondered the diagnosis thing mainly because of my son. I know from my work and study that he would be diagnosed as having Aspergers, if not Autism. But I'm hoping that with diet modification, expectation management, and a little patience on my end, that I can mold him into a productive young man without drugs, craziness, or diagnosis. I don't know if that's possible (we're slowly approaching a tipping point, but we've stepped up our game and things are holding steady for now).

I'm curious what others think- those of you who have been diagnosed how has it helped/hurt you. Those of you with aspie or autie children, how has it help/hurt them?

9 comments:

tiffrutherf said...

Thanks!! I left you a message under our old post...I hope you get it.

tiffrutherf said...

It does depend on the parent. I've see some people get a diagnoses and just figure why even try, because out look is so bleak.
The diagnoses is like the rubber stamp confirming all your fears. Once you get it is up to you to sink or swim. Some people get it and use it as a crutch and never expect anymore then the diagnoses gives them. While other say "Not my kid, we are going to fight"..Its not so much the diagnoses that effect the KID, but the way the parent handles the diagnoses and presents it to the kid. (how many times can i use the word "diagnoses" in on post! lol)

MARGARETE said...

I see you are following my blog. Nice to meet you. I will be checking in on yours also!
My dd has a diagnosis and I really do not tell many people. Most of the time they can't see a difference in her except that she moves alot!!
I have seen some people stop talking to you when they find out about a diagnosis...it hurts, but then they truly were never your friend.

SavedAspie said...

Another concern, in addition to how some people get treated by others who find out about a diagnosis is how difficult it can be to stay employed- even if the individual is no more "quirky" than the rest of the office, it's still that stigma of something "wrong" with them. Thanks for your comment.

Leslie Ronald Howard said...

It looks like the son may have Asperger's. My diagnosis was recent.

Wish I had known earlier.

The outlook is very positive for Aspies. We are hard working and creative. I keep a bunch of creativity in check while in public. Now that I know what's bothering people, I can adjust.

But what age may have been best for me to have known about this? Maybe teenaged years or preteen. You know, when you learn about adoption and sex and all. That age.

Would have been nice to have known before this. Would have been compassionate to have known before this.

Janet said...

We started homeschooling our Aspie son this year. He's seven and I could already see that the school district had a set agenda for making sure he was always safe and received an "appropriate education." In essence, they would have watched him like a hawk, pulled him out of class to "help" him fit in better, and coached him to do well on standardized tests. None of that is life threatening, but it's not so very good for his heart and soul. We all need to be able to experience life on our own terms. Adventure and freedom should be part of childhood. Academics should be about inspiring a love of learning and curiousity about the world around you- it should not be about passing standardized tests. I think our son would have been better off ten years ago, before the diagnosis, and before No Child Left Behind.

SavedAspie said...

Janet, I hope the homeschooling goes well, and look forward to reading about your adventures-in-homeschooling on your blog. Quite a few of my friends have been very successful with homeschooling!

amhealy said...

I think early diagnosis is a blessing. It's nice to know what "it" is. But I don't let my son use it as an excuse, merely as an explanation.

I also think not knowing could be good, too. I've seen quite a few people use the diagnosis as a way to go on disability. I think Aspies are very capable people. If an Aspie is diagnosed, they might not try to do something that they otherwise might have tried to do.

SavedAspie said...

Thanks amhealy for your comment... you've provided key advice for any parent (or Aspie themselves): Don't let the condition be an excuse...