So Our Son is Autistic…. And It’s Going to Be OK.

This was yesterday. My husband and I sat in the sun-soaked but sterile exam room on the 10th floor of the eminent children’s hospital in the big city, with a very nice developmental pediatrician and a lovely child psychologist, and heard the words:

“Through our testing and examination, we have enough evidence to make a diagnosis of Autism Spectrum Disorder…”

We had spent a good chunk of the previous day there with Babyboy:

Our pediatrician had asked us to wait for the evaluation at the fancy children’s hospital, so we did. We had waited for the appointment for FOUR MONTHS. The date sat looming…. And then, here it was.

The night before, we had the usual night of disrupted sleep with Babygirl, plus me lying there anxious from 4 a.m. on. We had our clocks set for 5:30 a.m. I turned Babyboy’s light on at 6:00 a.m. and made enough noise to get him stirring, then pulled and pushed him into decent clothes and got his wobbly sleepy self downstairs for a cup of milk and we ran around crazy packing the diaper bag and getting snacks and pouring emergency coffee for us until we managed to get in the car and on the traffic-packed highway.  

Of course we had wasted panicked time printing directions for where we needed to go, of course missing the lovely orderly packet of information that had been mailed to us- it looked like junk mail!- with two color-coded maps and lists of helpful information. No, we hadn’t really looked at our mail in a week, so we missed that, and went with some hastily folded google maps and my memory of what floor and what building to aim for.

Through traffic and the ridiculously serpentine parking garage- What, this is TWO WAYS? We managed to get to the right place by the appointed 7:45 a.m., then to the waiting room, then… to wait.

The waiting room was full of families, and Babyboy does not do well, typically, in rooms full of kids. He started to melt down. Tired, confused, and with little tolerance for other kids in his space, he started crying to be picked up and then crying to be let down, climbing up on me then bending to get down, uncalmable. I was about to ask the rather flat-affect front desk lady if there was a quiet room where we could wait instead, hesitating as I didn’t want to seem too pushy but also thinking, Surely they’re had similar requests, after all, THAT’S WHY WE’RE HERE, but then a pair of neatly dressed staff with name tags came out with hands outstretched, smiling, cooing almost, and comforted us to a back exam room.

 A small back exam room. A very small, windowless exam room, with an adult desk, a child’s desk, an exam table, three chairs, four adults and a wary toddler somehow sorted in there. The motherly psychologist waved at the 4-foot-high wall-length darkened window and told us it was a two-way mirror and we may be observed. If she hadn’t pointed it out I wouldn’t have noticed. I did notice that she appeared to have naturally curly hair.

Babyboy calmed remarkably in the room, especially once she lifted the top on a box of toys and puzzles. “Oh!” He breathed, and so it began, several hours of testing: games and puzzles and lights and balls and animals and dolls and cars and blocks for Babyboy, and hours of questions for us. The very earnest bespectacled developmental pediatrician asked us (I’m sure) several sets of standardized parental questionnaires while we were helpfully distracted by the psychologist administering Babyboy’s concurrent (I’m sure) several sets of standardized child testing modules. It was helpful in that they got the best gut/ short answers out of us without our over-thinking things, as we were so taken with Babyboy’s activities. I did notice that they asked us about eye contact in about ten different ways.

Babyboy sailed through. He sat, stood, pointed, played, imitated, read letters (so cute the way he says “q” like, “keee–ewww” with a southern accent) and even stood on one foot, all with little cajoling. Maybe a few Reese’s pieces to calm him when his chair slipped and he hit his chin on the child’s desk and wanted to leave; and maybe a few more to get us through the physical exam. Overall, he cooperated wonderfully. We were proud. We dallied in the hospital lobby on the way out, and watched him watch the tropical fish in the aquarium-worthy fish tank.

But the big day was yesterday, when Hubby and I drove in, ourselves, for the “feedback session”. Is he or isn’t he? We had no idea what they were going to say.

We’ve been so confused. We– even I, who trained in pediatrics, and even Hubby, whose own brother is autistic– we have been holding this image of autism as Rain Man, as the weird kid who’s there but not there. Early on we read definitions of autism and thought, well, that can’t be Babyboy, because he just doesn’t fit that EXACTLY. And he doesn’t. But he is.

What they explained to us yesterday was that he definitely, beyond a shadow of a doubt, meets criteria for Autism spectrum disorder, with its typical expressive and social communication deficits. BUT he does not have any cognitive deficits. He may have some minor gross motor skill delay, but they’re not sure as the testing is done in such an unnatural environment, so they recommend a PT eval as well.

They talked about ABAs (Applied Behavioral Analysis) which we had already heard about from friends of ours. They talked about genetic testing. They talked about getting more Early Intervention (EI). They talked about special school resources. They seemed to really know what they were talking about.

We feel OK with all of this, as not only have we had months and months to let this word and all of its meaning churn and germinate in our minds, we’ve also seen how well Babyboy’s done with the services he’s already had. He has EI 5 sessions a week, and he’s talking so much now; he’s reading letters and numbers; he’s so into taking turns and cleaning up and saying please (pish!) and thank-you (tanku!). He loves his EI ladies, and beams when they come over, sits and shows he’s ready to “play”, and gets upset when it’s time for them to go.

So while it’s hard to hear, it’s OK. It will be OK because we live in a world, a country, a town with excellent resources and services; and we are surrounded by loving family, friends, neighbors, and church folks who will see us through. There’s loads of evidence to suggest that with the proper therapy, he’ll overcome any deficits. Hubby jokes, “OK, so he’ll go to MIT and not Harvard.” Maybe he will.

But it is one more thing on the backdrop of many good and bad things: Babygirl not sleeping well still, and us without any good plan to address that; I’m working 5 clinical sessions per week and I am falling behind in my “productivity” at work, and I am not sure how I will catch up; Hubby has suddenly got two huge job opportunities and is interviewing next week; Hubby is also in the middle of a grueling travel schedule; and we’ve got the Storm of the Century upon us, apparently, today.

And I drove into work today, Friday, and am sitting alone in my office, not knowing that at 5 pm yesterday they cancelled the whole day of clinic, ahead of this storm.

But hey, there’s a reason for everything— I have time to write this all down.

 And it’s all going to be OK.

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6 Comments

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6 responses to “So Our Son is Autistic…. And It’s Going to Be OK.

  1. I’m glad that you are finally through the evaluation and follow up. In some ways it is such a relief to have a label and a plan and then you can move forward.
    Christie

  2. I was always uneasy about those two way mirrors. I was observed interacting with will. And I also sat behind those mirrors and observed evaluating therapists interacting with Will. The diagnosis was worth it in the end. It was the conduit for services for Will that helped him tremendously. Still, the mirrors were unnerving to me. You are right. It is going to be okay, in fact better than okay.

  3. Nikki DelPiano

    So glad you have answers now.
    God is watching over you all and yes, all will be OK! Love to you all!

  4. GenMedMom – this was beautiful to read – engendered much emotion in me. You are a wonderful writer. Our children are gifts to us. You and your husband are obviously honoring your son by your efforts, and he will benefit so much by experience (your husband) and support (your family and community). Everyone will be rewarded. I’ll be thinking about you. Thanks for sharing.

  5. It certainly must be somewhat of a relief to have answers now so you can move forward and get the ball rolling on what needs to be done to help your son. Your strength and resolve is evident in your words. Thank you for sharing your journey.

  6. I have been following your blog since you first mentioned your concerns about your son. I am sorry to hear this, but really glad that you finally have some answers. This was a beautifully written post, and it is clear how much you love your little boy. Thanks for sharing.

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