What’s inside this article: An overview of what autism spectrum disorder is, including access to the official diagnostic criteria, plus nine signs of autism that I experienced personally that don’t necessarily fit the description you often see of classic autism.
The early signs of autism aren’t always apparent in toddlers. Or, they’re at least not easily recognized as the signs of classic autism.
But, when the expectations placed on your child increase (especially social), these signs of autism start to be more evident.
For example, you may not notice your child’s struggle with social skills until they begin kindergarten and you realize they don’t interact well with their peers or have meltdowns when they’re expected to interact or do group work with the other children.
We didn’t start the assessment process until my son was six years old. We finished four months before his 8th birthday.
A Quick Look at Functioning Labels
Now, I don’t like using functioning labels. But, he’s often described as having high-functioning autism. So, for the sake of this post, I’ll be using that term. It’s also sometimes called “mild autism”.
You can read about why functioning labels are harmful here.
He doesn’t have all the signs of “classic” autism so his assessment was later than the average age (which is 4). This often happens because the signs of high-functioning autism are more subtle.
Misdiagnosis (particularly with ADHD or other conditions with overlapping symptoms) is more common for kids who fit the “high-functioning profile”, in other words, those requiring less intensive supports
Looking back I see they signs were there long before I picked up on them 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’re autistic. 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.
What is Autism?
This is just a basic overview of what autism is if you aren’t familiar with it. If you wish to learn more, you can read in-depth about the history of autism, facts and statistic, symptoms, and more here.
Autism Spectrum Disorder, or autism, is a neurodevelopmental disorder that impacts brain development causing most individuals to experience communication problems, difficulty with social interactions, sensory processing differences, and a tendency to repeat specific patterns of behavior.
There is also a “markedly narrow repertoire of activities and interests.” In other words, they may have one or two special interests and not much desire to do anything else.
Neurodevelopmental means that it is related to the way the brain grows and develops. This means that although there are often challenging behaviors associated with autism, it is not a behavioral disorder.
In other words, children with autism don’t choose to behave in a challenging way – they behave in a challenging way because various lagging skills make them require additional supports to respond adaptively in various environments.
The term “spectrum” recognizes the complex range of abilities and performance in people with the diagnosis, within a continuum of severity. The effects of ASD are lifelong, impacting on all areas of a person’s life.
No two individuals with autism are alike and may have significant differences in skills across multiple domains.
Individuals With Autism Have:
- A range of abilities
- Their own strengths, talents, and special interests
- Challenges that present in unique ways
Early Signs of High-Functioning Autism (That I Missed)
This is how we experienced the signs of high functioning autism.
Remember that everyone’s experience will be unique.
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.
He was only 4 months old.
I chalked it up to being tired, but it was more than that.
However, he had the same response to family gatherings, birthday parties, and any situation where there were more than a few 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.
When we go to school, if there are more than 5 people in the classroom when he arrives, he needs to start the day somewhere else quietly.
It’s not as bad if he’s there first and people begin arriving gradually, but he can’t walk into any type of crowd.
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 license plates 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.
These days he loves all things Pokemon. It started when Pokemon Go was released and it’s grown from there. We’ve played all the video games, watched all the shows, collect the cards and toys, etc.
I can’t even tell you for sure how many Pikachu stuffies are on his bed right now. And, with more pokemon being released every year, he has more to look forward to and learn about this interest which keeps it exciting.
3. 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 referring to them as undoons and start using the correct terminology.
He does still use made-up words occasionally. But now that he’s older he understands that his word isn’t the actual word, so he will use the correct word as well.
At school, if he’s using a made-up word, the teacher will ask him to draw a picture of the meaning – to help her understand what he’s saying.
4. 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!”. Oh. my. god.
This moment was not only memorable but incredibly 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.
5. 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.
It seemed like a normal part of childhood to me.
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 common signs of autism.
I thought it was just toddlerhood.
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 just got home, but he wouldn’t get out of the car. I ended up carrying him inside. 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. Basically, I was trying to ignore it because that’s how I was taught to handle “tantrums”.
I did eventually take him back outside to the car and let him walk inside, and afterward, he was eventually able to calm down. This is just a prime example of how cognitive rigidity can affect day to day life.
Now that he’s older
Things haven’t changed much, 5 years later, in terms of controlling situations and being rigid about things. But intense meltdowns are definitely fewer.
Recently we stopped for fast food on the way home and I asked him and his sister to carry their own 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, so he carried his sister’s meal inside.
When your child has autism, it’s not as easy as swapping bags at the table. I asked him to carry his food inside, so he had to carry his food. 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 autistic children.
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.
My current challenge is finding him the same sneakers, over and over again, as he grows and needs a bigger size.
8. Aversion to certain tactile sensory experiences
Do 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 he cried inconsolably. Even with trying to get him to taste it and play there was no way to calm him down.
Looking back now, I remember he also avoided the feeling of certain textures on his feet. At the beach, or in the yard, he would lift his legs up and yell to avoid having grass or sand touch his toes.
It was such an unusual reaction for a child, but at the time he was still a baby, it didn’t raise any alarm bells.
9. He didn’t have the classic symptoms of autism
Perhaps the biggest reason of all that I missed the more sublt signs of 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 or that he must avoid eye contact, 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.
Read the list of official diagnostic criteria for autism here.
Saturday 1st of February 2020
Thank you so much for this post! My daughter is now 9 and diagnosed with high functioning autism (Asperger syndrome). The wide range of symptoms are so confusing at first and unfortunately easily mistaken for behavioral issues. Being from a small town I was originally told it was my fault, that I just needed to socialize her more! On the second day of kindergarten the teacher pulls me aside (of course I had to accompany my daughter to class daily) and says “Honey, have you ever thought your child may be autistic?” I broke down in tears immediately because finally someone saw the things I was seeing. This was my third child so I knew things were different to say the least. Thank God for that teacher. Like you, my advice is to trust your gut. Do not feel alone. Our children are wonderful!
Monday 20th of January 2020
wow, this is very relatable to me. my son is now 11 and he is doing very well now after lots of hours of therapy and meds. He is very smart and in accelerated and advanced classes and has an advanced vocabulary for an 11 yo. He is very focused on math and computers. The younger years were the hardest. but once we found our groove it got easier.
Thursday 12th of December 2019
Thank you for this article!! My son is 4 and we are just now entering the world of therapists and OT and sensory issues, but mild autism has always been something I’ve been curious about and this article rings true with almost everything about my son! Like yours, mine also started with a Thomas obsession, which then led to trains, sprinklers and now washing machines, however he talks like he’s 12, has no problem giving eye contact and is very social and loves to play!
Saturday 7th of December 2019
My son is five and we were able to tell that he had some delays because he would refuse to talk verbally, I started teaching him and myself ASL before he was diagnose at age 4 1/2. Now at age 5 he started social skills and he enjoys it. I tell our Social Skills therapist and coaches that academically I am not too worried because he is smart. He knows all the planets, including facts about each one, US states and capitals, knows everyone's name just by meeting them once, reads everything at plain site and more. Because I had intuition that something was different about him I read books and learned from those books on tips and ticks that they used to handle the meltdowns when things didn't go his way. I would use list of tasks so that when we would go run errands he would not have a meltdown because i was not driving where he wanted to go. I just wished that his pediatrician was certified to give the proper diagnosis. There are some pediatricians who are but because ours was not the wait list to get the diagnosis took longer than a year because he is high functioning - Autistic. I embrace my sons special likes, interests and not hide him from the world because I feel the more he is involved socially the easier it will be when he grows up. Thank you for sharing your journey I hope your story is read by many!
Friday 29th of November 2019
THanks a lot for sharing your experience my son now 4 also had same alarms and i had doubts when he was 3...but i got to know few more like weaning off d bottle and his brother also has similar issues...i always doubted that my first had autism and d second had adhd with sensory issues but later realised that my second also has autism too....i hope people get aware of this issue coz i have seen so many families in need of information like this as kids with autism are not understood and are labelled as stubborn and what noy and they are disciplined to the extent of being spanked.....