"A" is for Autism?

Oh, where to begin?
If you read this blog (and you know you do) you're no doubt familiar with my darling Henry and his spitfire personality. You're also familiar with the highs and lows of that personality--the raucous laughter and the epic meltdowns. Complicating Henry's personality is his lack of speech. Henry is WAY behind in talking. It's like he got to around 9 months and sort of plateaued for a year or so. He's been in speech therapy since November, and he's definitely progressed but not at the rate we hoped.
A few months ago, Henry's new-ish pediatrician (we changed docs because the first one seemed unfazed by pretty much everything going on with Henry) recommended we visit the local developmental pediatrician, mentioning something about "the spectrum", as in the Autistic spectrum. My heart sank, as Autism has always been one of my big fears about having kids. I know a zillion things can go wrong with living organisms (it's incredible to me so many of us are mostly okay), but Autism has always been high on my list of fears. For anyone who doesn't know much about Autism, here's a general definition: A pervasive developmental disorder characterized by severe deficits in social interaction and communication, by an extremely limited range of activities and interests, and often by the presence of repetitive, stereotyped behaviors.
My experiences with Autistic kids and adults is very small. I've seen a few of each professionally, and found each of them very difficult to relate to. (I know, I know, everyone is different and we're all unique snowflakes, but I'm generalizing here.) Each of these particular clients seemed aloof, oblivious and out of touch to me. Basically, I just didn't like them. (Fortunately (most definitely for them), none of them remained my clients for long.) I'm also pretty sure an ex-boyfriend was an undiagnosed Aspergers case, and that dude was a huge pain in the ass.
(I'm sure you can see where this is going. Sorry, I'm going to write the whole damn story, since this has become my therapy.)
Well, since the new pediatrician made this recommendation, Henry has come a long way. . .sort of. He knows a bunch of words and uses them (for the most part) correctly. He knows all his ABC's and can count to 10 (although he says "W" for 7). He waves/says "bye bye" and "hi", often shows interest in other children, plays with others (even strangers) if they're willing to chase and tickle him, points out objects of interest ("car!" "tree!"), and can take turns. Then again, he often doesn't respond when we call his name, doesn't seem particularly interested in sharing experiences with us, and often doesn't connect with other children.
Whatever. We thought we were in good shape. We went to the appointment with the developmental pediatrician a few weeks ago, even though the speech therapist hinted that this particular agency had a tendency to overdiagnose Autism. That gave me pause, but the pediatrician insisted we go. I was sure that the doctor would say something like, "There are some symptoms here that concern me, but he's made so much progress over the past few months that I'd like to see where he is after he starts preschool."
So, we go to the appointment, everything seems to go well, Henry plays well for about 90 minutes with a speech therapist he never met, the doctor leaves for a few minutes, comes back in and says, "Yep, he's Autistic." Well, she doesn't actually say it like that, but that's what it felt like to me. There was no discussion of MAYBE. There was no mention of him doing well in the past few months or doing exceptionally well (in my opinion) during the doctor's hour and a half observation of Henry. It felt very much like she was saying, "Yeah, you know all that stuff about Henry improving and how he played nicely in this tiny room with a stranger? Doesn't matter. He's still Autistic." The doctor was pleasant and attempted to be empathic, but she also seemed confused and bewildered by my weeping, as she continued to say, "I'm sure this isn't a surprise to you?"
She wasn't able to tell us WHERE he is on the autistic spectrum, no mention of high functioning or low functioning. Basically it was like, "Your kid has this lifelong, incurable, potentially devastating condition. He could be the next Bill Gates or he could be dependent on you for the rest of your lives. Here's a brochure about a $30,000/year Autistic school and an application for a handicap parking decal. Have a great day!" I'm sure there was more to it than that, but that's what it felt like. I walked out of the appointment crushed, stunned, tearful, and lost; and I stayed that way for about 24 hours. Tripp, bless him, barely had time to respond himself and just tried to keep me from spiraling into despair. He is disappointed and scared, but seemed much more emotionally prepared to get this news than me.
The next week was a weepy blur. I constantly watched Henry for "signs." He just responded to me calling his name, of course he's not Autistic! He misused a word he's known for months; he's not progressing in his language like I thought--definitely a sign of Autism. At any moment, I could be 100% convinced he either was or wasn't Autistic. I felt high on life when I thought he wasn't and crushed when I thought he was.
The WORD "Autism", the label "Autistic" feels very final and scary to me. It feels like a restriction on what we can expect from Henry. Of course, all parents have hopes and aspirations for their kids. I think I want what every parents wants--first and foremost, kids who are healthy and happy. But I also hoped Henry would be friendly, and loving, and empathic, and gentle, and smart, and funny and a good friend and someone who will hire the best nurse's aide money can buy to change my diapers when I'm old but also someone who stands up for himself and doesn't take shit from anyone. The label "Autism" seems to stop short the possibility of all that. My kid won't be able to relate to others. He'll be the weird kid, won't look at us, will be stuck in his own world. Worse, he could be throwing crazy tantrums and not speaking when he's 10, 12, 15. . .
Friends and family have been very supportive and have lots of advice. Basically there are two camps: 1. Don't worry about it/ Get another opinion. Some have said there's NO WAY he's Autistic, doctors overdiagnose this disorder all the time and you were warned that this doctor in particular overdiagnoses. 2. Good, you got the diagnosis, now you can get the help Henry needs.
Meanwhile, we're home with the "After the Diagnosis" packet (and about a billion Autism websites), most of which say you've got to intervene EARLYEARLYEARLY and WITH INTENSITY. Age three is too late! If you wait till they're four, you're done for! They've got to have 20-25 hours of 1:1 treatment per week, especially when they're two to three years old!
HOLYFUCKINGSHIT!
Basically, it's just been a whirlwind. And my sweet, sassy, spitfire Henry is completely oblivious to it all. He plays with kids when he feels like it, he cuddles when he feels like it, he completely ignores us when he feels like it, he laughs and cries with intensity, he has meltdowns, and yet sometimes he shocks me with how easily he shakes off disappointment. Good days and not so good days. Actually, more like good moments and not so good moments.
And here's where I am with it: My aunt said something that just hit me the right way: "Henry's not Autistic, he's Henry." And that's the truth. He's Henry, and he'll always be my Henry, my son. No diagnosis or problem, however big or small, will change that. Whatever he faces, I will be right there by his side. I love him so much, and I want nothing but the best for him. But if he's got this, I'll be there with him. And even if he doesn't have this, he surely will have something else to battle.
So, Henry is Henry. And no matter what, I got your back, buddy.