Well, Mommyish friends, it’s time for me to eat a little humble pie. Six months ago, I vented some spleen about people making snap diagnoses of my daughter for being introverted. At the time, I was frustrated that we’d done basic screenings multiple times, always getting the response that there didn’t seem to be an issue.
But at the beginning of December, we got a diagnosis, and yes, Alicia is on the autism spectrum.
It has been an interesting journey, because we came to her diagnosis in a very roundabout way. As I wrote over the summer, speech therapy seemed to be making a big difference to Alicia. In the fall, she was referred to a program at our regional hospital, which would offer a more in-depth assessment of her speech and language – and the assessment showed that, in addition to the sounds she was pronouncing incorrectly, there were some subtle oddities in her language use that needed further investigation.
We got lucky and got a cancellation spot at the pediatrician’s office; a month after that, Alicia had a developmental assessment (a process that is probably worth writing about all on its own!) At the end of the assessment, we had our diagnosis of autism spectrum disorder, a referral to a preschool intervention program, and, unsurprisingly, an awful lot of questions.
As is my way, I’ve been reading everything I can get my hands on about ASD. And although I have a great deal still to learn, both generally and with regards to the specifics of Alicia’s situation, I wanted to share the things I’ve already learned from her diagnosis.
Autism Doesn’t Look The Way We Think
Our image of kids on the spectrum is based on the extremes. When you think of an autistic child, you might imagine a non-verbal child melting down from sensory overload, or one of the savants you read about who can do college-level math in elementary school. That image has been slanted by how kids were diagnosed in the past: unless they really struggled with day to day life, or demonstrated a startling ability, they simply weren’t diagnosed at all.
Alicia’s developmental assessment team gave me a list of suggested websites to consult, and one of them led me to a 2014 CDC report on autism which shows an incidence rate of 1 in 68 kids. You don’t have to be a math savant to realize that means there are an awful lot of autistic kids (and adults) out there. Until the diagnostic criteria changed – a change that’s pretty recent – people who didn’t have trouble functioning or start playing the piano like a virtuoso at 4 were just considered the oddball kids, the ones who followed a different drummer. Thinking about it now, I’d guess that I know several adults who might have been diagnosed with ASD if they were kids today.
My impression of what autism looks like wasn’t wrong for some kids; it just wasn’t right for all cases.
The Screening Questions Can Be Deceptive
Part of my frustration with getting the autism screening questions over and over was that none of them applied to Alicia. She never missed a milestone. She showed and looked for affection. She didn’t flap her hands or rock. She didn’t have frequent meltdowns – in fact, she had far, far fewer than her drama queen older brother. And she was certainly interested in playing with other kids, although she did best with small groups. The only “red flag” by most screening tests was late toilet training, but considering her brother was also a late trainer, I put that down to genetics more than anything. Out of curiosity, I did a quick screening test on one of my recommended sites; Alicia scored as low risk for ASD.
The issues that Alicia demonstrates are a lot more subtle than that. For example, she has trouble telling people a story: she doesn’t understand that you don’t know what she knows, or what order to give information. She has trouble focusing on people long enough to understand instructions, or to have a social interaction that goes deeper than a quick hello. And her imaginary world – which is vivid and quite amazingly complex – is often more interesting to her than a person right next to her trying to get her attention.
I’ve heard that some of this probably stems from how ASD manifests differently in girls than in boys, which may be true. But what it meant for us was confusion: every time a anyone brought up the possibility of ASD, the checklists we were given seemed to rule it out.
Autism Is Not A Personality Type
In retrospect, I’m kicking myself for not getting this earlier. Alicia being introverted didn’t rule out Alicia being on the spectrum – after all, there are introverted autistic people and extraverted autistic people. Just like any other personality descriptor you can throw out there, they’re not mutually exclusive.
I think Alicia’s introversion (which I recognize as an echo of my own) muddied the waters for me. I understood what it was like to only want to deal with a few kids at a time, or to need quiet time in my room to “recharge my batteries.” But looking at it now, I’d venture to guess that she’s closer to the middle of the introvert/extravert scale than I would have thought.
Diagnosis May Depend On What Programs Are Available
Someone I know who works with kids with ASD told me that five years ago, Alicia would never even have gotten to the developmental assessment stage. Why? Because five years ago, there wasn’t a program to refer her to – not unless she was dealing with major developmental delays or behavioural problems. Today, on the other hand, there’s a great preschool intervention program that is fully funded for any child with a diagnosis. So Alicia’s diagnosis means that there’s something specific that can be done – and not something we’ll have to pay out of pocket to do.
I’m very grateful for that, but the implications are more than a bit scary. Alicia would no doubt have managed without the diagnosis, although I suspect her entry into kindergarten in a year and a half would have been a bumpy ride. (Maybe not, though, given her easy transition to preschool this past fall.) But another child we know attended this program last year; he was wrestling with sensory sensitivity and resulting behavioural issues to the point where he had to leave a preschool – and also probably would not have been diagnosed five years ago.
Dollars and program hours shouldn’t affect which kids get diagnosed, but realistically, they almost always do. I count ourselves very lucky that Alicia has this opportunity.
Alicia’s Diagnosis Didn’t Change What She Needs – Or Who She Is
An hour before the developmental assessment started, we knew that Alicia needed help learning social skills, strategies to help her follow instructions in groups, and continuing work with speech and language. An hour after it was done, she needed…exactly the same things. The diagnosis of ASD is a label that allows particular resources to kick in, and explains particular things about her, but it didn’t change her strengths, her weaknesses, or her general awesomeness.
Alicia is a funny, energetic, terrific kid. She doesn’t let herself get pushed around by anyone – something I cheer on when she’s standing up for herself on the playground and rue when I’m trying to convince her that it’s time to put on her boots. She is her own person and is absolutely unapologetic about it – which is why, to my delight, she didn’t bat an eye at being the only little Thor in a classroom full of princesses this Halloween.
I love how she thinks just a little bit differently – like when she didn’t know what fruitcake was, so she named it “clown bread.” Or when her Superman action figure got scared by a bad guy, so Wonder Woman had to give him a hug before Alicia tucked him into her bed. Or when she decided it was time to curl up to go to sleep with her stuffed animals “…and the darkness…and the stars.” There’s not a day that goes by that she doesn’t make me smile.
Her diagnosis may explain some of those things, but it doesn’t change any of them. When she starts the program in February – an intensive, 20-hour-per-week, multi-disciplinary, personally-designed plan that frankly is still making my head spin to think about – she’ll only be learning how to apply the terrific things about herself to the skills she needs to learn and the tasks she needs to do.
I know how lucky we are that Alicia’s diagnosis will have relatively little impact on her life; I know many parents of kids with ASD have incredible challenges to face, both immediately and throughout their children’s lives. And I know that I have a lot more to learn about ASD, especially how it relates to my unique little girl. But I also know that, above all, she’s Alicia, the daughter I love more than anything. A diagnosis may change many things, but it can never change that.