Back to School, With (or Without) a Diagnosis
September 9, 2008 by Kristina Chew, PhD
Filed under Health
We’ve been through a lot of challenges with Charlie over the past several years but the one thing we’ve never had to argue about is his diagnosis. While the St. Paul Public School District initially wrote down “communication disorder” as Charlie’s diagnosis on his first Individual Family Services Plan (IFSP; we were living in Minnesota at the time), it was soon evident that Charlie had autism, and that’s been his diagnosis ever since. I think it’s been Charlie’s limited language—-when he was two, the only thing he said was “dah”—that especially stood out (he also had some “challenging behaviors”—some bouts of hitting himself on the head). But once we got the report saying that he had autism, there’s never been a question.
Yesterday’s NPR has a report on why can’t doctors diagnose autism?, and why teachers are sometimes the first to suggest that a child might be autistic. Dr. James Ball of New York Families for Autistic ChildrenAutism and Early Intervention: Real Life Questions and Real Life Answers is interviewed and notes that autism is “a lot more common than you would think.” The NPR report opens with an account of six-year-old Colin, who has just been diagnosed with autism. Unlike my son, it’s suggested, Colin and other kids at the “higher end” of the autism spectrum are more able to put words together and show other (academic) skills, and tend to slip through the proverbial cracks. What stands out—and what teachers notice—are the social skills challenges.
Quite a few of my college students are studying to be teachers and, from time to time, I ask about their training in teaching special ed students and especially students who are being mainstreamed and/or who have an aide. The students know about autism and other learning disabilities, but (keeping in mind these are students just starting their careers in the classroom), actually detecting and identifying signs of autism in a child would require more training. New Jersey’s Governor Jon S. Corzine has signed a bill (A4055/S2558) calling for “teacher training in awareness and instruction methods for students with autism and other developmental disabilities for candidates for teaching certificates, current teachers and paraprofessionals.” This bill was signed into law nearly a year ago on September 12, 2007, and, at least in my own school district, I’m not sure how the bill is being implemented; am looking up the schedule for Board of Ed meetings in our school district (and coordinating schedules with Jim so one of us can attend a meeting).
While Charlie has always been clearly classified as “autistic” in all the states and towns where he’s attended school, I do think that one reason he was diagnosed while quite young was because he was in a daycare (on-site at my then-employer). Charlie was 18 months old when the daycare teachers started to drop hints and offer brochures about “birth to three”; it took me awhile to get the point and initially I was mighty aggrieved. In the long run, we’ve been grateful we found out so early that Charlie had “something,” and that we were able to start learning about autism, and start trying to help him.
And from those first early days of massive confusion and general uncertainty, is the (middle school) boy who betook himself out of a warm nest of fleece blankets one September morning, pulled on his clothes (still shorts—summer is still very much in the air), shoved his feet into his beat-up black slip-ons (ignoring the clean new pair right next to them: comfort comes in the familiar things) and stomped down to the bus, whose driver called. The bus had driven past our condo complex. Charlie got on when the door opened, slouched down in the front seat on the right, and the bus doors shut and off he rode to the first day of school.
And I stood in the parking lot and waved until the bus could not be seen.
I had the first suspicions about TH because of his obsessive spinning of objects and echolalia, but the pediatrician literally said, “He makes eye contact. He’s fine.” But with the baby, it wasn’t just my noticing things. TH didn’t go into nursery school until he was over 18 months old, so we had no other inputs. But the baby went in earlier, and in addition to my own concerns, I was hearing–as with you, gentle, but there–concerns about his behaviors. Those confirmations of my own feelings of red flags–I was second guessing myself as being hypervigilant because of TH–are probably what led to our seeking therapy for our youngest. Had we not had those other inputs from caregivers–these are very experienced caregivers and there also was a graduate student in social work observing the class–I might have sat for several more months on my concerns, rather than beginning therapy for that child at age 10 months.
I guess in the interest of staying on topic, I should mention diagnosis, too. TH’s has never changed since his original one around when he turned 4. I suggested at an early IEP toward the end of kindergarten that maybe it shouldn’t be that diagnosis (I was feeling like maybe he’d improved in some aspects enough to not require certain services), and all of the many professionals in the room rejected that out of hand.
What’s odd is that there are things that have come up that I didn’t anticipate, even though I know his diagnosis and know it is accurate. Yes, he has LOTS of social issues, and yes, he’s verbally articulate, like Aspies are “supposed” to be–if he’s not engaging in a conversation of nonsequiturs. But…man, are his right-brain issues obvious. No sense of time–he still cannot read a clock or parse its meaning, doesn’t know month from year or what day of the week it is. No executive processing skills whatsoever. Doesn’t know if he’s wearing pants or not or if they’re zipped or if the shirt is on wrong side out. No voice modulation. No filter, social or otherwise. He cannot really tell me about interactions at school because he’s not coming from a place to understand those interactions and describe them. He seems to know spelling but uses invented spelling most of the time…just lots and lots of things that are so right-brain related, and I think if we were to test more closely for some of these, we’d identify some of these children more accurately.
The thing about TH is that he’s never oppositional, never acting out. He’s always cheerful and apparently insouciant. So, he’s not someone’s typical idea of an autistic child in a constant meltdown, disrupting everyone because he’s freaking out. TH freaks out, but he does it quietly, in a corner, back to the world, hands over his ears, sometimes rocking.
It’s hard to diagnose accurately when these stereotypes of what “autistic” means persist.
So true. I think the teachers and daycare staff see so many kids that they can tell when something is not quite right. Also, they spend the whole day with the child while the doctors nowadays only see the patients for a few minutes.
In my son’s case, it was a friend who first suspected of my son’s diagnosis (he’s a teacher), and right after him told us that, we got a call from my son’s daycare.
the school principal picked up something during Alec’s kindy interview and suggested we get some speech therapy, within 6 weeks of starting speech we had started our journey to a diagnosis. So many things were there for us to see but he was our first, looking back you can see it all so clearly.
Both the preschool and our prediatrician mentioned red flags at around the same time (within weeks of each other). Patrick’s autism wasn’t really identifiable until we tried to send him to preschool, I think because he shows such ‘atypical’ characteristics.
Needless to say, if we had had another child, we’d have been watching and wondering as you describe, Emily…….it was fortunate that Charlie was in daycare, in a setting with other children. I think the differences between him and the other kids were so stark even at a young age; had Charlie been home, he would have been diagnosed at a much layer age (with me denying it all the way).
so true, Alli, it all seemed like such a muddle at the time, but true and obvious, in hindsight!
Brad is home with his nanny, so I never had that point of comparison. I was completely oblivious. My next door neighbor, a former teacher, encouraged me to call early intervention for speech. At 18 months, I shrugged it off. “Ehhh, he’s just a boy,” I thought. I thought the same thing at 24 months, but called Early Intervention just because I figured no big, and why not. When they flagged him for autism, I completely went into denial, complete with anger. A few weeks later, still convinced early intervention was wrong, I started surfing the internet for validation. That’s when the lightbulb went on for me. (No my denial wasn’t validated.)
I’m so glad we sought and received a dx because it allowed Brad to receive wonderful services at only a nominal cost to us (through the state’s zero to three program).
I can easily imagine Brad being the undiagnosed kid who slips through the cracks. He’s the quiet kid who follows directions and plays well by himself. What’s there to notice. If it weren’t for my neighbor prodding me, I may not have called early intervention and sought a dx.
@Another Laura,
I felt just as you described when the daycare teachers urged us to consider having Charlie evaluated—–felt just a lot of anger and disbelief; I had the denial thing really bad. “Lightbulb” describes how I felt when I realized, yeah, that’s it, and started to understand that accepting it was the beginning of helping Charlie.
Hope Brad is doing good now—-