Heather Hewitt is the mother of two beautiful children that have been diagnosed with autism. She’s writing an inspiring blog A Manageable Amount of Chaos and we’re thrilled to share her first blog post here.
At the suggestion of my husband, Shamus, I am going to write my first post about “red flags”. Autism presents differently in every person, but there are a few key general elements: social skills, communication, and repetitive behaviours. You can google “red flags for Autism” and you’ll get a ridiculous amount of results so I’ll focus on what it looked like for my kiddos.
I should preface this by explaining that I was aware when Shamus and I got married and were planning a family, that there was a chance that our child(ren) would be autistic. My husband’s older brother, Aaron, had autism and was non-verbal his entire life. I didn’t know anything about autism when Shamus and I started dating, so in an effort to relate to him and his family, I did a lot of research and asked a lot of questions. This is basically to say that, although I had limited dealings with Autism before I had my children, I knew that there was likely a genetic component and I knew some signs to look out for.
I’ll start with Penny. I actually wasn’t too concerned when I had Penny as she was a girl and the research says the chances of a girl having autism are much lower than a boy. Recently I’ve found that a lot of people believe that girls often don’t exhibit behaviours the same way boys do because of social norms, so they are actually just diagnosed less. I’m not sure how much research has been done on that at this point though.
The first and biggest concern I ever had with her was when she was about 14 months old and she stopped giving kisses and saying goodbye. I actually remember the moment, standing in my porch, someone asked her for a kiss. Penny didn’t respond. I said, “yeah, she doesn’t do that anymore” and then I froze. She had learned a skill and then lost it, which is known as regression. This is a huge red flag – anyone who is concerned about their kids development and mentions any sort of regression, I always recommend following up on it. It can seem a bit scary because it almost feels like they’re withdrawing into themselves and there’s nothing you can do to stop it. This can look different for every child, but it was a big thing for me. I still struggle with it emotionally, as Penny often learns a new skill and then regresses again. It’s a bit like 2 steps forward, 1 step back – then 4 steps forward, 5 steps back, 7 steps forward…you get it. It is frustrating for her and me as her parent (I won’t speak to the frustration levels of anyone else).
Penny was delayed in her speech, which is an indication of Autism but not a “red flag” as such. A lot of kids are delayed in speech, but coupled with other things it can be an issue. She avoided eye contact (and when she did look, she looked right through you), she didn’t point or show joint interest, she didn’t pretend play – she only lined things up, usually in complicated patterns. She never responded to her name, she was very hard to bond with because she didn’t really care if I (or anyone) was in the room, she flapped her arms a lot (which I initially thought was waving, but looking back now it’s one hundred percent hand flapping). She threw massive tantrums and it was really hard to calm her down – the tantrums were usually in relation to a change in routine. I’m sure there’s more, but that was 5 years ago and she’s progressed so much since then.
But, basically, when I looked at a checklist for things to look out for, Penny was all of them.
For Rory, I initially just put him on the waitlist when he was a year old to be checked out by a pediatrician because Penny had been diagnosed at that point and I figured, why not? He was a boy, genetics probably played a factor, the waitlist was like, 18 months, I could always take him off. I was on the fence, literally until we went into the assessment, about whether or not he would be diagnosed. He was, and is, basically the opposite of Penny. He’s always smiling, he likes attention, his eye contact is on point, and he very rarely used to have tantrums – his three year old self is laughing at that tantrum assessment now.
However, he never did respond to his name. He played with toys just slightly differently (like spinning wheels on cars), and always had to have things on the table. He had delayed speech, and had a very weird habit of mouthing everything. He still does it – licks hinges, floors, shoes, rubs his lips on people’s arms, and he has a special fondness for door latches. Rory+door latches 4eva. When he was completing his ADOS (the screening test for Autism), instead of playing with a remote control car they showed him, he laid down on the floor and licked the door stop. Shamus and I looked at each other and laughed, like, “no more testing needed, we are aware he’s Autistic”.
There might be more that I noticed at the time, but I’m not remembering now. We’re a bit far gone from the “looking for signs” stage. Sometimes I’ll talk to another Autism parent and be like, “Yes! My kid did that too!”. There are so many indicators, and some of them are really subtle. Also, I’ve only ever had kids with Autism, so a lot of times I don’t know what’s standard.
My advice to anyone who has concerns about their child is: see someone. Don’t take the “wait and see” approach. The sooner you can get professionals involved, the better. If you put in a referral to Child Development, you can always remove them from the waitlist – that list is looooong. I am probably going to do a whole other post on my feelings pre- and post-diagnosis, but my basic sentiment is always the same – an Autism Diagnosis is not the end of the world – it is your same child, just with a shitload more people to help them and you.
A Manageable Amount of Chaos lives here. Check it out!