“How did you know?” is the number one question asked of me since sharing my son’s, Big A, autism diagnosis. In person, but especially in messages, from acquaintances and strangers alike. Hey, I get it. It’s not a question I wanted to ask aloud either.
No one wants to think that something is “wrong” with their child.
I never knew how many expectations I had for my son until we received this diagnosis. My expectations were unspoken, unexamined, and frankly, they were ridiculous. I’m beginning to learn that my expectations aren’t dashed, just…different.
All I’m saying is a diagnosis of autism is not something worth sidling up to me at the grocery store, eyes on the tile, mouth twisted to the side in a whisper.
It’s not worth sliding in my DMs about. I looked to the diagnosis of autism with dread too. Now that it’s here, it’s not so bad. Let’s chat.
BUT FIRST, A DISCLAIMER
I’m not a doctor. What I have experienced with autism is unique to my child and my experience. As I’ve heard so many times since joining the ASD community: “If you know one person with autism then you know one person with autism.” I write this article in the hopes of empowering you to push for answers if you have concerns, not to scare you.
AND SECOND, A PROMISE
It’s going to be OK.
Here’s how I knew my toddler was autistic
He was an “Easy Baby”
What they really meant was “What a silent, vacant faced baby!” This was something I would constantly get from strangers. I counted once.
Six different people said this to me at Wal-Mart in one morning. Again, I ain’t mad. This will be reiterated throughout: I’m not trying to shame anybody (cuz I can’t shame myself, see?). We’re just talking.
There was a reason this was said exclusively to me by kind, well-meaning strangers in box stores: the fluorescent lights, the squeak of the cart wheels, the blare of the end cap ads (those are bullshit, aren’t they?), aaaallll the products, and my incessant habit of stopping for conversations with anyone who makes eye contact with me were freaking Big A the fuck out.
There were no “classic” autistic meltdowns to the excess stimulation and forced socializing.
Bless his heart, he would sit there, scared out of his mind probably, but always try so hard. At least attempt to respond to my chatter or those telling him how “easy” he was being. Now he loves shopping and “racing” in the cart. He helps place groceries in the back of it too. That’s leaps and bounds from his previous thousand yard stare.
He Didn’t Do Social Anticipation
When Big A was around a year old, I remembered how babies would lift their arms when they wanted to be picked up. I thought my nephew had been doing that by a year old but couldn’t really remember. I looked forward to Big A doing it soon. Except he didn’t.
There were other “typical,” cute baby reactions I wasn’t seeing. Big A didn’t really understand or get excited about peek-a-boo. We would try to create rituals around songs, rhymes, finger games, calling out the same greeting when arriving home, but Big A never seemed to understand or get excited. We called him Little Buddha. So placid.
That’s because Big A doesn’t do social anticipation. Especially at that time, it didn’t matter what we did: our oldest son lacked the key to human social behavior and had no idea what we were doing or why.
He won’t always lack this trait. It’s just something we have to work on, a muscle Big A will learn to consciously flex for growth. We do countdown games, incorporate toys Big A is obsessed with (cars) into anticipatory exercises, and turn as many interactions as possible into social quid pro quo’s. I’ll touch more upon these techniques in future posts.
He Had An Incredible Attention Span
As soon as my son could move independently, he crawled his baby ass to the wood floor of our dining room to roll his toy cars. Back and forth. Four inches from his face. Tiny index finger outstretched, tip of tongue exposed, eyes focused in concentration. It was pretty cute, actually. I was proud of his attention span (I still am).
I knew he was doing it too much. Because he would occasionally play with other toys, did not meltdown when diverted from his preferred activity, and showed such advanced concentration skills we (myself, Josh, providers) brushed aside our concerns.
This fixation on a toy or activity is a common marker of autism.
One of the many things I didn’t understand was that he didn’t know how to play with his toy cars. His speech therapist urged me to watch toddlers playing with cars. Other children make car noises, crash them and yell “boom,” put things in them. They don’t only roll the toys cars back and forth in front of their face.
We started redirecting his rolling and he’s been a good sport. He’ll probably always need his “rolling breaks” when things are too much. Now he’ll pass cars back and forth, like they’re balls. Occasionally we’ll play hauling games with the trucks. Sometimes he makes car sounds. For two days he quit signing and would only say “beep beep!” to all queries. That was fun.
As Soon As He Could Roll Over, We Noticed Stimming
As soon as he could roll over (which was a smidge late) he started…flapping. You doing Blogilates or PIIT28 yet? Remember The Superman? That’s what would he would do. A lot. On his stomach, arms and legs off the floor, vigorously freewheeling.
When he could crawl he went to the old-timey heat grates in our home and ran his little heels back and forth on them until he had blisters.
As soon as he could stand he started jumping. There’s probably something going on with his inner ear, ankles, hips, and core issues. His core is weak which impedes bilateral movement, only exacerbating his sensory input problems.
Core issues affect the hips. He enjoys joint squeezes on his ankles, knees, and hips, which tells me he probably has sensory needs there, which is another reason for the jumping. Jumping also stimulates his inner ear and provides sensory input about balance.
These behaviors, of course, are called stimming.
They’re not necessarily something I want to reduce. Stimming helps him and aren’t hurting him or anyone else. I do want to help provide relief, or input, or whatever it is that is causing these behaviors. I don’t know how best that is done yet. We bought an exercise ball to play games to increase his core strength.
We tap his head in an attempt to help him regulate and regather. This, strangely, works.
He Didn’t Give A Shit About A New Sibling
A hurdle in the diagnosing of his were his seeming social skills. He would make eye contact, but not maintain it. There were smiles for strangers, but they were brief. We were sitting in story time but was he really participating? He seemed to…tolerate everything. And because he wasn’t throwing fits it was easier to overlook that he didn’t seem to be enjoying much either.
When we were in the hospital delivering my younger child my mom and best friend Amanda took care of him. I remember us all being so worried: Josh, mom, and I reading stories about siblings coming home to him, Amanda and I exchanging flurries of messages about schedules and affirmations.
There was no need cuz guess who didn’t give a shit? Big A. He was happy to see us at the hospital. Content to play with Grandma and Aunt Amanda. He seemed to think Little A was a cat (we have two), so wondered why we were making such a big deal about it, but that was about it. It was a little weird, nothing like all the books had prepared us for.
As my friend Amanda told me when I was researching this piece:
He did not demonstrate the typical separation anxiety you would expect…I thought it was because of secure attachment with both of you that the brief separation didn’t bother him. Later, I realized I was having ‘Aunt Amanda denial.’
Since being in services he is demonstrating more strident attachment. I don’t how excited I should be about him screaming outside the closed bathroom door. It changes day to day.
He Talked Late. But, He Wasn’t Communicating At All.
I clung to this like the door-that-totally-could-have-fit-two-people while the Titanic was going down. And it’s true, boys do talk late. Again: I am not a doctor. There is truth in the statement that every baby will develop at their own pace. There are plenty of children who don’t talk until age three and then reach other milestones in a typical fashion.
Here’s the thing, though. He wasn’t communicating. At all.
Big A didn’t point or grunt at the things he wanted.
The muddy autistic toddler didn’t seem to have any preferences. I didn’t know many toddlers who didn’t shake their heads “no” or screech and reach at a counter they knew cookies were on.
This was a hard thing to put a finger on, let alone flesh out to others.
This was an easy thing to group solely under “not talking.” And concerns about “not talking” in an 18-month-old is an easy thing to categorize under “over-anxious mother.”
I’m going to get serious for a minute. If “not talking” encompasses not communicating, this is a big deal. Don’t let anyone dissuade you otherwise.
I’m not saying it guarantees autism. I am saying that lacking the means to communicate cultivates frustration that you or I can’t imagine in the developing toddler.
This frustration can’t help but lead to behavioral issues. At this stressful time negative habits responding to these behavioral issues could take root for all parties involved. As Big A’s speech therapist reminds me: behavior is communication.
If I want that communication to be positive, I need to give him positive and effective communication tools like ASL, picture schedules, social stories, and other nonverbal communication techniques. We’ll explore this later as well.
He Was Different Than His Sibling
The older Little A gets the more shamedly bemused I am that I didn’t notice something was different about Big A. But, you know, hindsight: it’s 20/20.
I don’t mean to take anything away from him. I love him so. We know he loves us too. But, cheese and crackers, do Big A and Little A show affection in different ways. Looking back, I can see how Big A could…take us or leave us. He liked having us near.
He liked if we sat on the floor while he was playing. But Big A wasn’t playing with us. Little A is, like, obsessed with us. He thinks being near his grownups is ok, but being on them is much better.
Little A does the more classic ratio of exploring an area and checking back in with a caregiver. Big A would take a much longer time between check-ins; and when he did, a quick word or smile would suffice before rolling, stimming, or exploring recommenced. Little A wants interaction with his frequent check-ins: a song, a game, a social exchange.
When we made faces at Big A he would watch, transfixed. Big eyes, a bit slacked jawed. Little A laughs, attempts imitation, and grabs at our features. Little A craves to see the faces of his caregivers, he’ll cry if turned away. Yes, Big A would look to me during times of uncertainty (like when strangers approached at grocery stores) for social cues, but it just isn’t the same.
Some of these examples are personality differences. But I’ve come to see that some are differences between more neurotypical traits and autism spectrum disorder traits in infants.
For A While, I Was in Denial
I’m trying to be so gentle here. Please understand that I am coming from a place of love, no judgment, and complete understanding. I can see you, caregivers. The ones in just a teensy bit of denial. I can see you because I was you.
You know what you know and your concerns are valid. The kind of developmental issues we want answers about can come with a variety of symptoms, a cluster of diagnoses.
Some issues seem right on the line and it’s easy for providers to take a “wait and see” attitude, especially in a toddler. Do not wait and see.
When I was in denial it was easier to go along. Being in denial made me desperate to listen to others, soothed by their more lackadaisical approach. But that’s not helpful. This intimidating time, this time between noticing concerns and receiving services, is critical. It is imperative not to waste it.
I asked for assessments and referrals months before they were “supposed” to be accessible to me. I don’t want to say I was told “no.” But I do want to say that First Steps workers were delighted and flabbergasted to get a self-referral for a child Big A’s age. I do want to say that we used personal connections to approach a top children’s developmental diagnostic center. When our pediatrician’s office received the paperwork it was news to them.
So, if I can give any advice to the toddler mom wondering – Get services. All of them. From anywhere and everywhere you can.
This post originally appeared on ishmom.com