Erik Quinn: The Heart of a Family: Autism Awareness Month

Monday, April 02, 2007

Autism Awareness Month

The whole "autism spectrum" thing has proved to be confusing to me. According to the Autism Society of Canada, the word "autism" refers to autistic disorder AND all autism spectrum disorders (ASDs). By this definition, Erik would be classified as autistic. Unfortunately, it's not that simple. I have been told by several people that WS falls into the autism spectrum, and I can clearly see Erik has autistic behaviors/tendencies, some of which are virtually debilitating at times. It is also clear the word "autism" covers a wide variety of diagnoses, from Rett's syndrome to Asperger's syndrome. However, WS does not fit into the five pervasive developmental disorders (PDDs) listed by the Autism Society of Canada, including childhood disintegrative disorder, Rett's syndrome, autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger's syndrome, although we were initially given a diagnosis of PDD-NOS (the FISH test eliminated us from this category). The definition below seems to kick us out of the ASD category completely, as ASDs are classified as PDDs, which, as I stated above, this particular resource does not seem to consider Williams syndrome to be. I guess it depends on whom you ask. I can see there are some autism-flavored quirks in my son and am comfortable stating Williams syndrome is an ASD. It is pretty obvious to me.

To make a long story short (too late), I feel like we don't truly fit anywhere with this damned diagnosis. Or, even worse, sometimes I feel like we fit to a small degree everywhere. Will Erik be mentally retarded? According to what I read, it's almost guaranteed. The severity of his disability remains to be seen, which is part of the special torture of being a WS parent. Time will tell. But wait -- not only do we have a child who isn't "typical," his mental retardation will prove to be out of the ordinary as well. He will likely have grossly asymmetric cognitive skills. Some people may never guess his brain doesn't work like it should, as he might seem even more intelligent than a typical child when he speaks using an incredible vocabulary and demonstrates an unusual interest in people. On the other hand, one might at first glance consider him severely retarded, as he may have difficulty tying his shoe or doing something we all take for granted. He will likely be neither of these things. In addition, Erik will likely require and desire more than special ed classes but more assistance than would be normally provided in the mainstream classroom. At this early point, I'm not sure where we are going to fit, so I am forced to conclude we will need to blaze our own trail. I'm okay with that, but I can see a very long road ahead of us.

Where does that leave us on the autism spectrum? I do believe we belong on the spectrum becauase of certain behavioral characteristics Erik has clearly demonstrated. However, with time these seem to be disappearing. Will these be replaced by other more mature tendencies? It will be interesting to see if he demonstrates any new autistic tendencies with time. Williams is one bizarre syndrome.

Erik's Aunt Dawnita reminded me it is Autism Awareness Month, and I feel it is important to take notice of this mysterious diagnosis and the millions of children on the spectrum. A big thank you to our families for keeping up to date on WS by keeping your eyes and ears open for information on WS and all ASDs. Most importantly, thank you for talking to others about WS and providing education about this diagnosis in our communities.

From Wikipedia: The autistic spectrum (sometimes referred to as the autism spectrum) is a developmental and behavioral syndrome that results from certain combinations of characteristically autistic traits. Although these traits may be normally distributed in the population, some individuals inherit or otherwise manifest more autistic traits. At the severe end of the spectrum is low-functioning autism which has profound impairments in many areas, to Asperger's syndrome, and high-functioning autism, to "normal" behaviour and perhaps hypersocialization on the high end of the spectrum.

In the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) and the International Statistical Classification of Diseases and Related Health Problems (ICD-10), autism spectrum disorders (ASD) are classified as pervasive developmental disorders (PDD), as opposed to specific developmental disorders like dyslexia, dysgraphia, dyscalculia, or dyspraxia.

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Blogger ~Deb said...

With “any” disorder, whether it be autism, heart conditions, mental disorders- such as bi-polar, anxiety, depression or something else that plagues people, no one can tell you that all people with “x” disorder is the same. One person with schizophrenia may hear voices, while another sees things and believes to be true. One person with anxiety disorder may have a touch of agoraphobia- (hating crowds) while the other one is afraid to leave their house.

Does that make sense? Maybe I took this out of context, but it sounds as though some people may ‘generalize’ the syndrome. Though I’m not familiar with any of it, my heart goes out to you!

God bless!

6:46 PM  
Blogger Nancy said...

Deb -- I think the only time it would really matter is for insurance issues...but then again, it may not, as WS can be considered its own deal. There may be some issues that come up regarding education and my husband's insurance and ASD in the future.

I agree that everybody is different within their conditions. Erik talks when other kids with WS don' just never know what will happen.

Thanks for stopping by! xoxox

7:06 PM  
Blogger Miss 1999 said...

You know what, it doesn't matter if people label WS as "Autism" (or in the "spectrum") or not-- Erik is special and unique in his own way. There are so many labels that we place upon ourselves, (I mean, I'm labeled with PCOS/IRS, GERD, PMDD-- and the list goes on). Autisitic or not, Erik is a special, unique child, and that's what matters *hugs*

Although, you are right, there are many children who are autistic, and we need to realize, and respect this, and give the love, dignity and care to these children that they deserve :0)

10:47 PM  
Anonymous Aspen said...

I have struggled with the Autism part of WS for a very long time now. Daven's lack of progress really frightens me and makes me fear that we will get hit with the double diagnosis. There is just no way of knowing for at least another year. Sigh. What I do know, however, is that our boys are VERY special and unique boys indeed.

I have missed you...

8:09 AM  

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