Tuesday, January 31, 2012

What the Future Holds

I knew it was time to blog last night when I woke up from my dream:

I was trying to blog, and I wanted to find some images. So I searched on Google, and what I searched for was:


 Okay, I know this is bizarre. And kind of funny. But I'd been wanting to blog and not doing so, and I guess my repressed anxiety about this emerged in my dreams.

The reason for my blogging lapse was the difficulty of my subject matter. I wanted to blog about the future, and that, Readers, is hard.

We've being wondering all of Benjy's short life what will become of him. Whether he will go to college, hold down a job and be independent, find love. Our views on this are increasingly pessimistic.

I remember a recent conversation with Lars, maybe a year ago, when I said, "I think there is a good chance Benjy will always live at home. That we will be supporting him until we die -- and then, who knows what."

I felt my stomach drop when I uttered those words. At that moment I felt utterly despairing.

But Lars did something wonderful. He said lightly, "Well, it will be kind of nice to have him around."

Oh, Lars -- I adore you! That gave me permission to think it would be okay, having our younger child with us forever. It's not that I didn't love his company, or love him, beyond measure, it's just that being a dependent for life, unable to function as an adult, is not what anyone wishes for their child. Forget the retirement life we've always dreamed about -- this is about Ben. And we were never going to get that retirement anyway; one or both of is will be working until we drop.

I think what really made me obsessed with Benjy's prospects this past week was a statement by the Asperger's Association of New England, an organization to which we belong, about the new proposed American Psychiatric Association designations that would remove Asperger's syndrome -- and PDD-NOS, and High Functioning Autism -- from the diagnostic manual. This could be a disaster for many, many people who receive sorely needed services under those diagnostic rubrics, including Ben.

Here's a small part of what AANE has to say on the subject:

"While Asperger's is sometimes called "mild" autism, there is nothing "mild"
about the impact Asperger's has on a person's life. Individuals with
Asperger's and related profiles are not less autistic than those with more
classic profiles. Rather, they are differently autistic. Though they may
have strong verbal skills and average to high overall intelligence, most
face significant challenges in social interaction, basic organizational
abilities, and daily living skills. Frequently, they are unable to find and
keep employment or live independently. Many withdraw from all social
interaction, and suffer from crippling anxiety or depression. The dichotomy
of "high-functioning" and "low-functioning" autism is a false one." 

It's the red words that really get to me. They tell me our hunches have not been so off the mark.

Of course, Benjy is not yet twelve, and time will tell. But when things start going downhill, like they are now, and functioning even at the relatively stress-free and highly therapeutic Joy School becomes a problem, then you've got to wonder. I mean, making it through college? And in the work place? Those are not easy things, even for the most typical among us.

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