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July 22nd is a date that stands out to me. It’s the birthday of someone very special, and it’s the day, nine years ago, that we received Charlie’s formal diagnosis of autism.
Slate has a recent Explainer column on how do you diagnose autism (prompted in part by Michael Savage’s claim that autism is widely overdiagnosed). Now Jim and I are convinced that Charlie could have been, and would have been, diagnosed in his first year and this had nothing to do with him being aloof or withdrawn or not wanting to be held or not “bonding.” Charlie was always affectionate, loved to be held, laughed and grinned big when trying to show my parents that he could hold the crib rail and not fall.
But he did seem to be able to keep himself amused with a stack of board books or a pile of baby toys for a long time. A long long time.
And he did do that assymetrical scoot instead of four-limbed crawling.
And he had these four less than sounds that I swore were nascent words. (Swore then; less sure as the years have passed.)
And I just didn’t understand how everyone else’s baby had just sort of rolled over one day. Charlie was nine months old when he rolled over on his own; prior to that, when placed on his stomach, he fussed and cried and howled and, exhausted, let his face sink into the carpet and his body flop over in defeat.
Charlie’s minimal language was the most obvious sign that Something A Little Unusual Was Going On, or rather that something wasn’t going on. Photos and the few videos a relative took (we’ve never been into videoing) show subtle signs, in the way Charlie’s eyes were focusing (or not), in his frequent fascination with objects in some sort of order or pattern, in his lack of joint attention. Charlie showed plenty of interest in (certain) things, but (as I only realized in retrospect) he did not try to show and share those things with us. It didn’t seem so much that he was anti-social, as that he was social in a different way, and had been ever since he was born.
A new study published in Social Neuroscience suggests that these social deficits, or rather differences, arise because of (quoting Science Daily) there are
….inefficient pathways for transmitting information between certain brain regions are to blame. The research implicates abnormalities in the brain’s inter-regional communication system, which connects the gray matter’s computing centers.
“The communication between the frontal and posterior areas of the social brain network is impaired in autism, making it difficult to understand the intentions of others” said the study’s senior author, Marcel Just, the D.O. Hebb Professor of Psychology at Carnegie Mellon.
The study is the first to measure the synchronization between the brain areas that make up the Theory of Mind (ToM) network, which is responsible for processing the intentions and thoughts of others. It is the first to provide such concrete evidence of faulty social network connections.
Researchers asked 12 “high-functioning autistic adults” and 12 controls to view animations of geometric figures interacting (a link can be found ). Participants were asked to select a word that would best describe the shapes’ interactions:
For example, a large triangle would nudge a small triangle to move outside its enclosure, and the correct word choice would be “persuading.” The control subjects were consistently better at inferring the intention from the action than the participants with autism were.
The suggestion is that the autistic individuals had more difficulty reading social situations and divining the meaning that “most people” would from them (if seeing one triangle nudge the other is an example of a social situation).
Charlie does display what appears to be “Theory of Mind” in some situations; there’s a reason he tells me “bye Mom” and gives me The Stare when he’s poking his nose in a kitchen cabinet—-but what certain gestures (a clap on the back? a fist-nudge off a shoulder?) mean, leaves him guessing. Sometimes Charlie will start doing some of those gestures though without the original intent. He’s been occasionally bending over and making loud coughing noises that lead people (like the bus driver) wondering if he has a caught a cold?. We know he’s imitating his grandfather coughing, though I suspect Charlie is making those sounds because he like the sound and feel of them. Charlie’s aware of social gestures and practices, but he seems to notice some few of those gestures and practices and then, sometimes, to repeat them quite out of context.
On a similar note: Charlie’d seem to have burgeoning imitation skills when, around 10 months old, he started raising an arm over his head when Jim did the same. I still remember Charlie in his teddy bear high chair raising up that arm in imitation of Jim, briefcase in hand and headed off to teach. After a few weeks, we noted that Charlie, at the sight of Jim at certain moments, started raising up his own arm in fervent earnestness when Jim raised his. Then Jim started to raise both arms over his head and—ah, hindsight—-Charlie kept raising one. “Guess he’ll get it one day,” we thought, little knowing that day would occur at least two years later and in a different Midwestern city that we had moved to—St. Paul—-and while Charlie was learning to do “gross motor imitation” in a home ABA program.
By the time we were sitting in the Child Development Clinic of the Minneapolis Children’s Hospital and getting the yellow-paged report from a glibly compassionate social worker, Charlie’s “symptoms of autism” were fully apparent. The Slate column on how do you diagnose autism notes that
Per the DSM, clinicians should diagnose a child with autism only if he is judged to have six or more social and linguistic impairments. The threshold is lower for so-called “autism spectrum disorders.
Charlie, you can be sure, had more than six of those impairments.
He still has plenty; Charlie was born with autism and autism is a ilfelong disorder, and he and we’ve done worked very hard to help him achieve the most he can. When he was diagnosed at the age of 2 back in 1999, we didn’t know what to think as we read that children were often diagnosed at 4 and 5 and 6. Was Charlie so severe that he was so young, and had a diagnosis?
Jim and I wondered that on a hot day nine years ago in Minnesota. But we also felt a sense of relief. The yellow evaluation report was just a rubber stamp of the reality we’d known about for months and that Jim had already thought was the case, and I had dragged me feet to accept. We were able to start Charlie’s education from that moment on and yes it’s been at times a long and bumpy road.
Autism is the “disease du jour” and that’s not necessarily bad. While Charlie was diagnosed while young, am wondering (as awareness of autism continues to grow) if autism will be diagnosed more in older children, as ADHD is in older children according to a CDC study. Perhaps all I might say is that I’m glad to live in a time when hot air talk show hosts mouth off about topics they know little, very little, about, and we get a chance to spread information, and truth, and love, about what autism isn’t, and what it is.
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Ms Chew; I know that I am going to tick you off but I just have to say it. I take it that you are stell cooking with fluoridated water so you are stell eating that lead and arsenic from the man made fluoride. I hope that Charlie did not have any discomfort after haveing the noodles.
1384 days ago
[...] written earlier today about Charlie’s being diagnosed 9 years ago, I’ve been thinking about how one reason that happened was because so many [...]
Nick was dx’d in June of 98 and he is left handed but can use both hands quite regularly. He had five words at age 3.3 and he was late to walk, about 15 months.
@M,
got Charlie his favorite brown noodles tonight….
@Leila,
sometimes Charlie seems kind of ambidextrous—-as easy with his left hand as his right when holding a pencil.
I think one thing that threw people about my being autistic, is that I started using words at about one year (about the same time as my two older siblings), but by age three was still using echolalia, though my speech started developing shortly after that. That, and I had the tendency to repeat things from documentaries, and I got the reputation of being exceptionally bright (I REALLY like that documentary-narrator tone of voice).
About the test with the triangles – were the participants asked to come up with their own word to describe it, or were they able to pick from a selection of words? This would have a very serious impact on the study if the participants had to select a word out of the blue. While I can have very good language skills, there are situations that I can’t activate them, whether because of stress or the type of activity – such as having to find a word. So, while even just reading the description of the actions of the shapes, I was able to picture the intent, I couldn’t find the word for it – and I usually test very well on language skills, if ignoring my WAIS verbal score.
I also think that, as more awareness of adults who are on the spectrum start to understand autism both in themselves and children, that more kids are likely to be diagnosed earlier. My dad always would say, when another adult would point out something unusual about me, he’d say “I was EXACTLy the same way at her age”. He didn’t really know about autism outside of maybe Rain Man, which came out the year before I was born, and he didn’t know much about the spectrum, such as how one could have advanced language skills and be autistic (one thing we both share, though he has significantly fewer problems with speech than I do).
So, it wasn’t until the school pushed for a diagnosis and I was 10, that I was diagnosed and my dad found out about himself.
1385 days ago
[...] were living in St. Paul when my son was diagnosed. I’m third-generation Chinese American, overly educated and a professor of Latin and Greek, [...]
9 years for us too. Spring.
We were pretty clueless until 7-8 months before and then time compressed with doctor and speech appointments and trying to get the eval scheduled, the folks from EI in.
Even though the eval was scheduled for 6 hours, from the look on the developmental pediatrician’s face after 20 minutes it was pretty clear that something was going to be up.
I used to get a little pang every April but I haven’t thought about it for the past couple of years. This year–not until now.
Kristina, my son’s OT always talked about the assymetry in most autistic children that she sees. She’s observed that they tend to use the right side of their bodies and neglect the left side. So she gives my son many exercises where he’s supposed to use both hands/arms and legs.
Despite the dire prognosis with the first evaluations as well as the dictum equivalent of a death sentence, it has turned out to be a far happier journey than I ever imagined.
Best wishes and many happy [belated] returns of the day