My son was 6 years old when we started the process of getting his autism assessment. He was almost 7 when it was completed. He’s 7 now and in second-grade. He doesn’t have all of the common signs of autism, so he was diagnosed late. He never received early intervention services, he was too old for that. We are waiting now for support through the school-age autism program. But, after we knew of his diagnosis, I realized I missed many of the signs of autism. Looking back, I see they were there, and I want to share them with you.
Remember, if your child does some (or all) of the things on this list, it doesn’t mean they have autism. This post is about my child. But, if you are a parent reading this and wondering about your own child, my advice is: always follow your gut. Voice your concerns to your child’s doctor. If I had followed my gut, we probably would have had an earlier diagnosis.
This is how my son showed signs of being on the autism spectrum:
1. Gets upset around large groups of people.
This happened even as a baby. I remember on my first Mother’s Day going out for dinner. As soon as we walked into the restaurant, my son started crying inconsolably and didn’t stop until we left. I chalked it up to being tired, but it was more than that. He had the same response to family gatherings, birthday parties, any situation where more than two or three people were present. Large groups still upset him, we even ate dinner and opened gifts in the bedroom at my in-laws on Christmas Eve because there were a lot of visitors.
2. Narrow areas of intense interest.
This is a common sign of autism. But if you do a Google search for signs of autism, when they mention this sign it’s usually followed by examples such as “memorizes all the places on a map or the TV guide” or “can list all sub-species of insects in alphabetical order.” In other words, it’s usually described as an unusual, narrow topic of interest. This is not always the case. My son’s first “special interest” was Thomas the train. He was 2 years old. What 2-year-old boy doesn’t love Thomas the train? It didn’t seem like a big deal to me, he was a little boy loving a little boy show. Although in hindsight, there were red-flags that it was more than a boy loving Thomas. He actually wouldn’t watch anything else on TV but Thomas for over a year. We only read Thomas books, he slept with a Thomas blanket, and he wore Thomas pajamas. He had over 50 toy characters from the TV show, hundreds of pieces of wooden train track, and a ride on toy Thomas, too. Clearly, there was a bit of Thomas the train overkill happening at our house, but as a first-time mom, it all seemed fine to me.
3. Over the top reactions to smells.
This is a moment I remember very clearly from when my son was young. One day we were taking a cab to his daycare. It was cold and snowy as we waited outside. The cab pulled into the driveway and I opened the door to help my son (who was 3 at the time) into the cab. This is when it happened. He screamed, “I’m not going in there, that man stinks!” This moment was not only memorable, but embarrassing. Although I agreed he didn’t exactly smell nice, to me the smell was mild and tolerable and I just couldn’t believe my child would say something so rude. Now, I am more familiar with my son’s sensitivities to smells and I let people know that if a smell bothers him it needs to be taken seriously. He can’t stand being around peanut butter, for example. Also, there are times when he doesn’t like the smell of supper and will literally not leave his bedroom for the rest of the night to avoid the odor.
4. Frequent ear infections.
I had absolutely no idea until recently that frequent ear infections are common in kids with autism. In fact, children with autism have (on average) ten times more ear infections in their first three years of life than a child who does not have autism. My son constantly had ear infections and eventually needed tubes placed in his ears. His frequent infections didn’t alarm me at all because when I was a child, I used to get frequent ear infections as well.
5. Making up his own words.
Last year during my son’s assessment, I found out that making up words, termed “neologisms,” can be a sign of autism. My son’s third special interest was wind turbines. His first was Thomas the train, his second was another kid show, “Jake and the Neverland Pirates.” But he called turbines or windmills “undoons.” I can’t tell you why, and I can’t tell you where it came from, but if you dared use any other word for a windmill in his presence he would actually get angry. As he got older, he did eventually stop, but undoon was a word we all used daily for quite some time.
6. Everything had to go his way.
I used to think, “Wow, the terrible twos are really, really terrible.” Sometimes, what I thought was a temper tantrum went on forever. I now know these were actually meltdowns, not tantrums. They were caused by his difficulties with transitions and routine changes — two warning signs of autism. I thought it was just the toddler life. There are tell-tale differences between a tantrum and a meltdown, but when you don’t know your child has autism, you might not know how to recognize these differences. Recently, we stopped for fast food on the way home and I asked him and his sister to carry their meals into the house. He ran inside ahead of us and when I got in the house, I found him hiding his face in the cushions on the couch. I realized I had accidentally passed him the wrong bag, he carried his sister’s meal inside. When your child has autism, it may not be as easy as swapping bags at the table. He had to take his bag and go back down to the car, buckle his seatbelt and then unbuckle it and walk back inside with his own food.
7. He drank from a bottle for a really long time.
Not being able to adjust well to change is common for kids with autism. In hindsight, I am positive this is why it was so hard to wean him off the bottle. He never used a soother, so at the time, I thought the bottle was just very comforting to him, but there was actually a little more to why he couldn’t let it go. This isn’t the only way he was resistant to changes. He used to insist on keeping his shoes on in the house, sometimes wearing them to bed. It would take half the winter to get him to wear a winter hat, and then half the summer to get him to wear a sun hat.
8. Aversion to certain tactile sensory experiences.
You know how everybody does those adorable smash the cake photo shoots for their baby’s 1st birthday? Not us. The second my son touched icing, he disliked the experience so much he cried inconsolably. Even with trying to get him to taste it and play there was no way to calm him down except for a bath and putting the cake away.
9. He didn’t have the classic symptoms of autism.
Perhaps the biggest reason I missed the signs of autism in my son is because he didn’t have the classic signs at all. He could say 20 words by his 1st birthday and was using short sentences by 18 months old. He met every single milestone early or on time. At 2, he knew his letters, numbers, shapes, planets and more. At 3 he could write his name, recognize sight words and was learning phonics. This is why I ignored my gut when I thought something was different. Everything I read about autism online made it seem so definitive that he must have a speech delay to have autism.
But remember, autism is a spectrum and there is no one size fits all. So as I mentioned at the beginning of this post: If you’re a parent with concerns about your child, always follow your gut and talk to your child’s doctor.
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