Confirmation, Maybe?

A while after we got the official diagnosis for Henry's FXS, and we had to explain not just his behaviors, but delays in progress to the layperson, I started harboring thoughts in the back of my mind that I sometimes wished that Henry would just be officially diagnosed with autism, just so I could stop having to explain what FXS is, how it works, and what it means.

We had a consultation with a neurologist to look into Henry's sleep patterns, and while I won't get into the utterly ridiculous suggestions this doctor had to "resolve" Henry's sleep issues, part of the paperwork involved exactly what I wrote above in the first paragraph.

A review/examination to determine if Henry is on the ASD spectrum.

I think it's a foregone conclusion, actually.  Since ASD is such a broad-ranging condition, no one person with ASD can be effectively compared to anyone else with ASD and expect to see similar results.  Henry doesn't necessarily exhibit the "typical" characteristics of an autistic person, but that's because there's really nothing "typical" about autism.

What a lot of people may think when they hear "autistic" is Dustin Hoffman's Rainman.  That's not a typical representation.  Not every person with autism looks forward to fish sticks and Judge Wapner.

We hear qualifiers like "high functioning."  That's pretty much a rationalization to say that a person with autism isn't nearly as Rainman-like, which may make those who are unfamiliar with this world a bit uncomfortable.  It's a way to reason a degree of "normal" when such "normal" is not an option.  It's how to determine how close to "normal" the person with autism is, so that it's not as uncomfortable to deal with.

To note: this is not meant as a criticism; I understand that the world of special-needs kids and adults can be rather scary to the general public, because it's a world of unfamiliarity.  As a parallel illustration, while Lori has familiarity with Japanese culture, it was a complete world-turner when we all went to Japan a few years ago and experienced the train station at rush hour.  Even going to the Outback Steakhouse that was down the street from our hotel and sitting at the bar to have a few beers was just slightly different than what we would experience here in the US.

Nevertheless, there is a recommendation to determine officially if Henry is on the spectrum.  This, to me, is a mere formality and confirmation that Henry is indeed autistic.  Of course, that also means that I have to work out how to describe it -- is he autistic, as a characteristic in the vein of being tall or half-Asian?  Does he have autism, akin to having brown hair?

At the end of the day, I think that's something I'll have to work out later.  But for now, it's just one step closer to pretty much having that one word to describe him without having to spend any additional sigh-filled effort in explaining the ins and outs of FXS.

While I do explain FXS whenever I can and at every opportunity, I read my audience and most times, I see that glazing of eyes when the attention is slipping and I'm about to lose them.  Those are the times when I'd wished I could just say "he has autism," and be done with it, because despite the controversies surrounding Autism Speaks, it has at least put autism closer to the forefront of the social consciousness such that people understand that even if they don't know what it means to be autistic, it's at least something they've heard of to understand that when we say our child has autism, or that they see that we're sporting that colored-puzzle-piece merchandise, they understand that we have a long and hard road ahead of us, even if they don't know what it'll be like.

(and that was a hell of a run-on sentence, if I do say so myself)

Point is this: people have heard of autism and as such, can display more sensitivity and tolerance toward our children's behavior.  I don't have to explain what it is, which can get exhausting (and thus making me feel like a terrible FXS advocate as a feedback loop).  I had wished for a DX of autism just so I could stop explaining all that Henry is.

It appears I may be getting this wish.

Of course, just because it's on paper doesn't mean that my son is any different.  The diagnosis doesn't change who he is or what he does.  He's still that same goof who wants to be tickled until he collapses; who tries to walk from the car whenever we got to the store, but starts to get nervous when we enter the store until he feels secure in a cart; who loves Aldi's veggie sticks; who has incredible hand-eye coordination to be able to track a rolling ball no matter how big or small it is.

What it would do, though, is give us an out.  Which was what I'd wished for earlier.  And now that it's becoming a likely reality, I'm having second thoughts.  Doubts.  I don't think I want to let the explanation go with just "he's autistic."

I think he and the FXS community deserve more than just me blowing it off because it's inconvenient for me.