Autism Awareness Month: and I just became aware my daughter has autism
by Cynthia Coupé
It’s April, which is Autism Awareness Month. I’d actually rather call it Autism Acceptance month, but that’s another topic.
For now, let me focus on the fact that it’s Autism Awareness month, and I just became aware that my nearly 11 year old daughter has autism.
I really don’t know where to start with this or how to organize it. It feels like a pot of spaghetti in my brain, with each thread being linked to the other and not knowing quite how or where to stick my fork in and get going on the meal.
But I digress.
My daughter has autism.
And I didn’t see it.
I didn’t see it.
And I’m a Speech Language Pathologist who has spent the past 20-25 years working with people on the spectrum, who began wanting to work with this population when I was 7. And I didn’t see it.
So, what does that mean?
Does it mean that I’m a crappy clinician, or a checked out parent?
No to both.
Autism in girls can be very difficult to diagnose, particularly when it is in the realm of high functioning autism.
I’ve known for years that my daughter was different...she has always been a unique creature...she had trouble in school when she was young...would sneak off to go to the bathroom and sing when she was under stress, the teacher in 1st grade was modifying her work because it wasn’t being completed, we homeschooled for the last few months of 1st grade. We got her on an IEP for reading support in the 2nd grade, which was a push (more on that another time) but with my insider info (it’s okay to PUSH FOR AN IEP) I was able to get it done.
In 3rd grade (she’s 5th now) we began to suspect she might have ADHD, but we didn’t complete the evaluation (long story but the evaluator wanted her medicated before the testing and we were against that, her symptoms were to mild and we didn’t want to go that route before we knew anything for certain).
In 5th grade the pandemic hit. I began to homeschool because she hated distance learning. And I got to see what it was really like for her. But I still had no idea.
Fast Forward to January when a dear friend passed along an article following her own child’s autism diagnosis. No way, I thought...her kid doesn’t seem autistic. So I read the article, and I immediately knew...that was my kid too. (you can find the link here)
I quickly went into “let’s get this done” overdrive and found a clinician that was trained to evaluate for autism, and had the knowledge necessary on how to evaluate for girls with autism.
What follows is my story:
I’ll try and be linear, to let your brain follow my brain and to be as anecdotal as I can. Again, this pile of spaghetti is all related, but difficult to find where to begin.
Looking backwards I can see it more clearly. In fact, almost painfully clear. But I don’t know when I would have first noticed it, even with the knowledge I have now.
Certainly not as a baby or toddler, like many boys. Maybe in first grade, when we first pulled her out of school. But then again, it looked much more like ADHD at the time (which she was also diagnosed with, along with a tic disorder and learning disabilities associated with ASD and ADHD).
Ah. There is so much to say. It feels as though each part I write opens up a world of other parts, so I will try and stay the course.
When would I have first noticed it? I don’t know. Thank goodness for the article my friend passed along.
For YEARS my daughter has been seen and described as willful, rude, unique, quirky, imaginative, sensitive, critical, bossy, generous, anxious, emotionally mature and more. What I see now is how autism presents in her through these various descriptors. And my parenting has been described as permissive, loose, overly sensitive to my daughter, not having enough boundaries, not strict enough, and more. I now see how my parenting has been described in light of her behaviors...her behaviors which I should have somehow had the ability to correct, cull, curb or nullify. And yet, in the arena of parenting I can tell you what I saw. I saw a girl who needed support and freedom. A daughter that wanted to make her own choices, that had a hard time when things were unexpected, that was sensitive to moods/textures/noise. A creature that could be absorbed in her own interest and not notice someone who walked into the room. Honestly, almost none of the things she was often described as. Courageous, brave, intelligent, sensitive, original, inquisitive, strong-minded, unique: yes to those.
Now I see how not noticing people when she is absorbed into something is one way her autism shows up. She’s social, but doesn’t often pick up on social cues. That has led to a difficult time making and keeping friends. A child that is very sensitive to new environments, may become selectively mute or not follow another social norm...which can lead to her being seen as “quirky” or “precocious.” A child that can’t stand tags on her clothing, doesn’t like to have her hair touched, cries when she’s overstimulated, and more. And yet, none of it seemed like autism to me, even though I’ve spent over 20 years working with people who were autistic.
You see, I was privy to the classical profile of autism, which is normed largely on the male presentation of autism. I was familiar with a range of traits, from what we consider high to low functioning. I was familiar with restrictive and repetitive behaviors, special interests that go beyond what a “typically developing” person might find interesting, familiar with a monotone voice and poor eye contact. I also knew about behaviors, anxiety and missed social cues.
What I didn’t know is that girls often show very little to none of these behaviors. So how can it still be autism? I can tell you. Girls often mask their symptoms, but they also can present as having typically developing social norms since research is finding that a girl's brain with ASD develops at about the same rate as a typically developing boys brain...so they don’t seem all that different than other kids their age. The restricted interests often happen to be more socially acceptable, like fashion, dolls or animals. Just as typically developing girls are generally different than typically developing boys, so are ASD girls generally different than ASD boys, particularly when thinking of the high functioning category of ASD (level I, previously Asperger's).
In fact, when my daughter was being evaluated, we nearly missed the ASD diagnosis because initially I had not provided enough “Restricted and Repetitive Behaviors” or RRB’s to qualify. She was nearly diagnosed with Social Communication Disorder or SCD (which, by the way, an SLP could diagnose, and I knew with deep certainty she did not have SCD). But, it had been so long since she had displayed some of her RRB’s and I wasn’t looking at her with the right lense. It felt like I was picking my child apart...pathologizing her own personality. I was afraid I had opened the goose with the golden egg. Instead, I asked her father and her stepfather to describe some of her more unique characteristics, and I quickly remembered some...the way she went in order to playground equipment when she was young, the repetitive touching of objects or her face, the way she loves to talk about her birthday all year round. With this new found knowledge, the evaluating therapist knew with certainty it was ASD.
So you see, each person with autism has their own unique profile.
It’s not a linear spectrum like this:
a little autistic _____________________________________________________________________ totally autistic
It’s more of a color wheel type spectrum, like this:
The simple categories on the wheel could be Language, Motor Skills, Perception, Executive Function, Sensory Filter. To make them more refined, we could divide them even further into Fixations, Speech, Noise Sensitivity, Social Skills, Anxiety, Posture, Eye Contact, Tics/Fidgets, Aggression, Depression. The variance moves from inside the wheel (low presentation), to the outside (high presentation)
It’s important to understand that a person is not actually “more” or “less” autistic. An autistic person is autistic. I’m not more or less American if I was born in California or Alaska and an autistic individual is not more or less autistic if they don’t display the same traits as another autistic individual.
So...back to my daughter. Because I had limited understanding, and because of the way her autism presents, it wasn’t obvious. She makes eye contact, she’s very social, she loves playing with age appropriate games and toys, all the things I thought meant she couldn’t be autistic. She had some behaviors that seemed odd, but maybe she’d grow out of them...she always liked to “hop” and shake her head, what seemed like little tics. She has anxiety, bites her nails, doesn’t like crowds or loud places, hates tags in her clothing. She wants to know every night what is happening the next day. A change in routine can throw her for a little fit, but it’s not that big of a deal. She is very discerning and often points out exactly what wasn’t 100% perfect with a situation/meal/experience. She makes up her own words (patik being one of my favorites...meaning super-uber wonderful or beyond perfect). At school there were many more struggles...reduced workload because she couldn’t focus (possibly ADHD), difficulty doing what the rest of the class was doing, late to write, difficulty reading, and the one that finally prompted me to put these all together: she was losing friends. My sweet, well-friended and friendly little girl was suddenly not being invited to birthday parties by the very people she had had as best friends for years.
It was a mystery. But, kids can be unkind and she is at that age (5th grade) where things start to change...still, something didn’t add up. Again, thank goodness for the article my friend sent me (you can find the link here).
Now that we have the diagnosis I can think back to several incongruities from the time she was born. Very difficult to soothe, didn’t like new situations, wouldn’t take a bottle or a pacifier, only mom’s breast, and would feed to soothe but then throw up because she wasn’t hungry. She had a terrible time getting to sleep, we literally had to hold her and bounce her on a yoga ball until she fell asleep, which could take an hour. The rocking chair worked too, but the ball was better. She still has a hard time falling asleep...thank goodness for melatonin and a good nighttime routine! As a young child she liked to play on exactly the same structures when she entered the park...first the blue springy seahorse, then each swing in order, and then she’d go off and do whatever she wanted. She’s always had excellent visual awareness. I remember playing a “game” with her (that she wasn’t aware of) where I would put something new in the house, on a shelf or so, and see how long it took her to see it. Moments, only moments. She was highly visually perceptive. She was also perceptive to emotion. At two years of age I remember thinking she was a genius because I could ask her to show me the facial posture for a list of different emotions, from the easy (sad, happy, angry) to the more nuanced (jealous, shy, frustrated) and she nailed it.
But still, all these didn’t seem autistic per se. Just my unique child. She talked from a very young age (first word was 7 months, first sentences were before a year) and she was fully potty trained, out of diapers before 2 years of age (she was ready, I was shocked). She never wanted to turn 10 because 10 was a big kid, and a big kid was nearly a teen...and a teen was an adult...and that was just too much. Now that she’s well into her 10th year she’s excited to turn 11, but don’t get her started on puberty talk...ick! When we get distressing news about a friend or family member she often tends to smile or laugh, even if sad. If she’s upset she’ll act very odd...hyper or overly talkative about random things.
Currently there are some more things showing up that certainly seem to be in line with autism. She only wears one pair of shoes, she still plays with Barbie dolls (and is beginning to be embarrassed by it, since she thinks other kids her age don’t), she asks inappropriate questions (nothing too rude or weird...but she’ll ask strangers how old they are).
I’ve noticed lately that she is a little exhausting to have a conversation with, and I finally pinned down why. It’s because she often asks “what” which I used to relate to her frequent inner ear infections, but I’ve begun looking more closely...it’s not that. It’s that when she doesn’t understand the context of a word, she doesn’t understand the sentence. So nearly every conversation is punctuated with “what?” and she listens in constantly to my conversations (which is pretty normal, I think, except her hearing is excellent and she’ll insert the “what?” into conversations she’s not part of).
Lately she’s been having a difficult time with her anxiety. Honestly, this has been the biggest blessing since homeschooling her, as I’m able to see and understand her anxiety from a much closer perspective. And because she’s highly verbal, she can explain it to me. “I used to get anxious in school and couldn’t finish my work, so they would move me to the back of the room where I was supervised, but I still couldn’t finish. So I’d draw and distract myself until recess came.” In our homeschool environment what I see is a wave of anxiety when a task seems too big or too much, which then results in a meltdown because she can’t see how to even start, or even starting seems so futile. Now that school is back (very) part time what I see is her anxiety present more often. It seems more consuming. “I’m anxious all the time. I hate it. I hate being anxious. It gets in the way of me having fun, it gets in the way of me doing work. I hate this about autism, I hate having anxiety. Having anxiety makes me anxious!” I tell her we’re doing the best we can to find things that calm her...radical self care. Her animals are soothing, so is singing, dancing, telling a joke, spending time in nature. But what about when she’s back in school full time? I don’t know...this is what we get to figure out. If we do nothing academic but we figure out this piece, I’ll be grateful.
So, as you can see the profile for autism is as unique as the individual. My daughter is highly verbal with no flat sounding speech, has fixations that are nearly normal (she loves birthdays!). She is sensitive to noise, touch, is highly social, highly anxious, has good posture (mostly), makes eye contact (mostly), has a moderate amount of tics/fidgets, displays no aggression (unless she’s frustrated and throws a quick tantrum) and has mild depression (when talking about her lack of friends).
There is so much more to say. This is really only the beginning. Perhaps not surprising, as I go down this road with my daughter, I wonder about myself. I’m pretty sure my mom is on the spectrum, but I never considered that of myself. I’ve taken a few online autism tests and come out in the “borderline” or “Aspie” ranges. Honestly, I don’t know. I do know that I can completely relate to a lot of what my daughter is going through, my experiences growing up were incredibly similar. I always felt like an outsider looking in, I had no friends (even referred to the school psych in 3rd or 4th grade for having no friends). I was very creative, always coming up with solutions others didn’t see. I would fixate on a certain interest and tune out the world while I was in the world of my special interest (I still do this). I became fast friends with people, quickly and inseparably, and the friendships often didn’t last.
But one thing I can say, from bridging both sides is this: I get it. I remember losing friends on the playground when I’d laugh if they got hurt. I didn’t think it was funny, I just couldn’t help it. I called it a “defense mechanism.” This still happens to me, and I warn people now. I remember that feeling of extra energy in the body when something upsetting or unknown happened, and not knowing what to do with it. I’ve never felt she was rude when she didn’t look at me if I walked into the room...she was doing her own thing, it wasn’t personal. I know how it feels to have anxiety, to be caught in this wave of tenseness and heat that feels like your blood is going to boil over. And, as a Mamma I am so sorry she has to deal with these things too. I know, as an adult much of it gets better. We find our tribe, we practice radical self care, but it can still take a lifetime to undo what we thought about ourselves as children.
My hope is not just autism awareness but autism acceptance. As we move forward with all the knowledge we have, let’s learn about acceptance. Let’s learn about how we’re all in this together, and an autistic person is no less or better than a non-autistic person. In fact, they have a bunch of superpowers. I would have to say that my experience is people with autism are deeply empathetic, they feel others emotions more than you may think. And their receptivity of language can far exceed their production of language.
So come join me, become an ally. Let’s build a world of acceptance. Talk to your children, your spouse, your coworkers about autism, or ask questions so you can gain a better understanding. Begin to see it from more than a linear view, and dive into the richness that it really is.