My son was six years old when we started the process of getting his assessment. He was almost seven when it was completed. He’s seven now and in second grade. As much as I dislike the label, he is generally described as having “high functioning” autism. He doesn’t have all of the signs of “classic” autism, so he was diagnosed late. He never received any early intervention services, he was too old for them. We are waiting now for support through the school-aged autism program. But, after we knew – I realized. I missed so many of the signs of high functioning 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 personal experience. 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 we experienced the signs of high functioning autism.
1. Gets upset around large groups of people.
This happened even as a baby. I remember on my very first Mother’s Day going out for dinner. As soon as we walked into the restaurant my son started crying inconsolably and he 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 there were more than two or three people present. Large groups still upset him to this day, we even ate dinner and opened gifts in the bedroom at my in-laws on Christmas Eve because they had 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 the “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 two years old. What two-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 three 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. 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
I found out that making up words, termed neologisms can be a sign of autism just last year during my son’s assessment. My son’s third special interest was wind turbines. Remember 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
If something didn’t go the way he wanted it to go, he threw a huge fit. 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 that 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 now know how to recognize these differences.
One meltdown I really remember was from when he was two-and-a-half. We were coming inside but he wasn’t getting out of the car. I ended up carrying him inside for the simple fact that I didn’t have all day to wait for him. He stood at the front door screaming and crying “I want to walk! I want to walk!” over-and-over again. I have no idea how long this went on. I did eventually take him back outside to the car and let him walk inside, and afterward, he was able to calm down.
Things haven’t changed much, 5 years later. 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’s not 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. In the pouring rain.
7. He drank from a bottle for a really long time
Not being able to adjust well to change is very normal 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 first birthday? Not us. The second my son touched icing, he disliked the experience so much that 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 of all that I missed the signs of high functioning autism in my son, is because he didn’t have the classic signs at all. He could say 20 words by his first 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 three 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, even as signs of high functioning 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.