The Road to an Autism Diagnosis for my Daughter

The road to diagnosis can be a little long and weary, but it is worth it

My daughter received her autism diagnosis at five (and at the time of writing, is two months shy of six). It didn’t come particularly easily, per se, but I had braced myself for a much bigger challenge. I definitely cried and let the relief settle in after I had the piece of paper with the diagnosis in hand as I realized that I could set aside the armor and steel I had prepared for a lengthy battle.

Signs During Early Development

From birth to the first year, she was mostly like any other baby. That’s pretty much the story of any autistic baby, of course. She walked around 9-10 months old. She was doing everything early or on-time. Way ahead in gross and fine motor skills for her age. Basically, not showing any delay whatsoever.

Pretty much the only red flag in this general time range is one that is even fairly common in neurotypical babies. She would hit her head with her hands to self-soothe. She would also lightly bang her head on the floor to self-soothe. She liked soft toys and sleeping on her stomach.

18 month appointment happens. Same story, generally nothing of concern whatsoever. She’s still on par, though perhaps a little too average in the verbal development category compared to the rest of her development range, where she’d always been generally ahead.

No hand flapping. Her physical stims are different. She loves sand and had a sandbox that she was in most days in this time period. We also had a ton of sensory toys for her to stim with constantly available just because they are super common for babies and toddlers. She understood me pretty well. Complex directions? no problem. She was as behaved as I’d expect a toddler to be. She was very attached to me.

The 2 year mark has an expected minimum vocabulary of 100 words. I wrote down every word that I could think of that she had ever said, regardless of whether or not she used them regularly. Every word she ever said equaled out to precisely 100 words, so it was okay… right?

At this point I already suspected that I was on the spectrum (though I hadn’t really done too much voicing it to others yet, I still needed time to really finish accepting it internally first) and I knew it could be genetic, so I was keeping my eyes out for pretty much any sign from here. She said short sentences here and there, but not frequently. She said phrases. She had words. But it wasn’t quite right… I had to remind her to point to things so that I could understand what she wanted. We had so many meltdowns because we couldn’t understand each other.

At 4, pronouns were still mixed up constantly. Pretty much never used the right one. They were also pretty difficult for her to understand. She also never referred to herself as “I” or “me” until after she was enrolled in public Pre-K, so around 4.5. She had always referred to herself solely by her first name.

At her 4 year appointment with a new doctor, she did not cooperate at all. She generally refused to answer their developmental screener questions, answered their questions with the same question (which is an autism red flag at this age, yet the nurse just assumed she didn’t know the answer to the question), and also just didn’t even participate in either the vision or the hearing test. She can be a very difficult child with strangers as she will refuse to engage. Another yellow flag.

Outside of that, her speech was a little garbled and mispronounced and pretty much unintelligible to anyone aside from me (even my husband had trouble understanding her most of the time) until she was about 4. Suddenly around 4 she was speaking in super clear sentences that most people could understand. Around 4.5 she was mostly caught up to her peers in terms of overall pronunciation and verbal ability.

General Behaviors

Personally, I can tell that she does still have a small delay in how much she is still able to communicate compared to her peers, but it is a small gap and it is pretty hard to detect. It seems like she is able to read some but is having a very hard time communicating what reading means when we try to get her to reproduce reading verbally. Even now, pronouns still get mixed up quite often. Heck, even I still mistaken mix up pronounce quite a bit, honestly. Too many pronounces get hard. I can honestly say that I recently struggled at a certification test that I feel confident on the material because I can’t say with confidence who the “they” they were referring to in a number of the questions actually was.

She has also always been a very well behaved child. This seems to be one of those things where people either know what I’m talking about with an autistic child or think I am out of my mind. Yes, she throws tantrums (and has meltdowns and shutdowns) and yes, she acts like a kid and doesn’t always do what I’d expect and she makes messes. But generally, she’ll listen to me and she’ll abide by the rules, so we haven’t run into too many big issues.

She absolutely interprets rules as something that are written in stone. It’s definitely more Ella Enchanted than Pirates of the Caribbean. If I offhandedly mention that she needs to stay in her room after bedtime because she needs to try and go to sleep, it used to mean that she’d be crying and screaming at her door begging to be let out so that she can go potty (potty training woes). Door wasn’t locked. She just knew that the rule was “don’t leave the room after bed time” and momma had done a very bad job of explaining that there are exceptions to that rule for pottying. It took a few times of explaining that there are indeed exceptions: if you need to potty, if you’re scared, if you need momma or daddy, if you feel sick, etc.

She was pretty late to realizing the emotions in the animated kids shows. Started calling them out to me about a year or two after her neurotypical peers would have been saying what those emotions were.

The final nail in the coffin was when we took her to Sea World so that she could see the animals (she has a Special Interest in the ocean, which is only partially my influence, and partially the influence of the Octonauts). She loved feeding the seals, seeing the exhibits. I even bought special seats at the shows so we could get closer and see them better so she could enjoy the shows too! I wouldn’t have tons of fun because the shows are so crowded and super noisy and the way the sounds bounce of the water and the cement is awful, but as long as she is happy, I’ll be happy.

Before the shows started when there were only a few people in the stadiums and the trainers were showing off the animals, she was absolutely enthralled. She would tell me all about the orcas, or the penguins, or the seals. She’d get so excited watching them swim. Correct other people calling the orcas anything other than orcas. She was having a blast. And then more people would trickle in. And all the voices at once would start to echo. And she’d start to not like it.

Don’t let my kid catch you calling these “killer whales”

And then we’d add in the microphones and music. And even more people. And then her hands would go over her ears and she’d grab my hand and be begging me to leave. So we’d leave. And never even watch the show.

I’m not totally keen on the ethics of Sea World anyway. It’s cool. I just wanted her to have a good day.

That particular day was especially eye-opening to me as she is an only-child, I am a youngest child, my husband is a youngest child, and I was never a baby sitter. I had a special interest in psychology, so I have read more than my fair share of child development books. Which is most assuredly not the same thing as actually seeing the difference between your kid and their peers up close and personal like that.

So many other kids were enjoying everything about the insane noise and echo and screams and shouts and music and whale water spouts and splashes and insanity of the orca show. Mine was the only one dragging us away from it.

Just like in the office meeting of 100+ people across multiple rooms and two physical locations when the virtual meeting rooms got left unmuted and everyone was talking at once, I was the only person head down on the table top with hands over my ears trying to become one with the desk.

After Sea World we still had a couple more rounds of processes before we got her to the pediatric neurologist. Her pre-k teacher told my husband that she didn’t think that the kiddo was on the spectrum. I went to the parent teacher conference a few days later and she was trying to assuage my worries, not even realizing that what she was telling me was actually just helping to confirm that the kid is already picking up masking tendencies. “She has her playground friends. She has her music friends. She has her art friends”.

In a study by Laura Hull in 2017 they researched some what masking is as well as what it does to people who mask (i.e. if they feel stressed, etc). They found, and corroborated with prior research, that (especially girls with autism) tend to mask their traits by sticking close to their friends and flitting in between different tasks so as to avoid detection of their autistic traits. When I was elementary school age, this translated directly to me having “playground friends” and “music friends” and “art friends” because my brain basically didn’t really register that they could still be friends in other places.

The next step was her doctor, again. He was fantastic and I made sure to express my worry of having to jump through a million hoops and be her personal warrior to get her properly assessed and diagnosed, so he made sure to refer me to a pediatric neurologist that he had experience with, in network for my network. My experience with her was as wonderful as could be expected and we left that appointment with a diagnosis in hand and a whole weight lifted off of my shoulders.

Girls Can Be Autistic

The first time I really heard the word “autism” I was sitting in a university level psychology class listening to my professor tell us that autism was just a different way of seeing the world. I’m sure I had heard of it before, but I had never really thought much about it or reserved much mental energy about it.

The second time I really paid any attention to the word was on an entire wing of school building I was working in for what would have been called the “special-ed” kids when I was in elementary school “The Autism Wing”. And I went home that evening and posted a rant on my newsfeed on Facebook. “Not all autistic kids are learning disabled and not all learning disabled kids have autism” and of course got the “yeah, but many kids with autism are severely disabled” response back from someone I respected and just felt like an idiot.

I have had many labels thrown my way over the years, some of them stuck: gifted, odd, quirky, sassy, bitchy, smart, focused, shy, quiet, reserved. Some of them didn’t: ADD, bipolar disorder, just to name a couple specific diagnoses. So many labels that were close but not really fitting. Yeah, I do have depression and anxiety. But they can’t even really call it anything other than “Generalized Anxiety Disorder” which basically just sounds like “yeah, basically you just don’t really operate like normal, yeah?”

The third time I paid attention to the word “autistic” was when I stumbled upon the same screener that many people who suspect they may have autism or Asperger’s have taken. I scored in the range of high amounts of autistic traits and recommendation to see someone for a potential diagnosis. Problem? I’m a girl. Girls aren’t autistic. Everyone knows this! I basically read the entirety of both the DSM IV and V and it’s pretty well known that it’s statistically improbable that girls are autistic.

So, of course I sent that to my friend and had him take the test, he also scored in that range. We talked about how of course we scored high because we are mathy people (him being an engineer and all, me just being a nerd). But my brain still wouldn’t let it rest so I sent it around to a few more people. Funny thing, though, everyone else I knew was in the low autistic traits range.

Fourth time I really paid attention to the word, you can probably guess: same friend sought a diagnosis. This hit me a wee bit too close to home. I actually wasn’t capable of accepting this. He and I are so freaky similar. He can’t be autistic because I can’t be autistic. Because, you know, girls can’t be autistic. Ergo, since we are basically the same person, he can’t be autistic. Can’t argue with that flawless logic, can you?

Doesn’t matter how much my brain screamed “no” — you can’t stop reality.

Guess what? He totally got diagnosed. Still took me years to stop being in denial about myself because, y’know. Girls can’t be autistic.

So here I am. Ready to tell you that girls can, in fact, be autistic.

We look “different” than textbook. We typically hid it a little bit better than our autistic brethren, partially because girls tend to want social connections more than boys. There are starting to be studies done to see how autistic girls perceive the world. This one that I’ve looked at found that autistic girls basically use other parts of the brain to respond to social cues outside of the part of the brain that neurotypical girls would use in order to translate social cues.

So basically, our brains were impaired and sort of “realized” that they were impaired but found a new traffic route to try and improve it, but it’s not quite as good as neurotypical girls. So we found a new way to respond somewhat well to social cues. We aren’t as good at it as most neurotypical girls, but we are better at it and get more reward from it than our autistic brothers do.

And of course, because no entry post on autistic women and girls is ever complete without a mention of masking, let me go ahead and dive right into it. Masking is living every day as if you are participating in a stage play without a script.

Everyone else knows what is going on, but you are sort of flying by the seat of your pants and needing to improv a wee bit. You put on this shell of what resembles a human being and a character that other people mostly respect and you never let anyone get close enough to find the cracks where the real you falls out, because the last time that happened…

As a girl, this was resolved by having a few close friends that I was always around for each task that I was doing. It was almost like I didn’t realize that my art class friends could be my friends in other places. Or that my playground friends could also be friends in class. I mostly had hobbies that I could do entirely by myself (yay books!) We also moved so much that it was never weird to anyone that I never kept friends through different grades.

It turns out that research is finally starting to realize that girls are, indeed, autistic too.