What’s inside this article: An overview of Autism Spectrum Disorder, including what it is, functioning labels, and the official diagnostic criteria, plus nine signs of autism that my son experienced personally that I missed when he was young because they don’t necessarily fit the descriptions you are often given of what autism looks like.
The early signs of autism aren’t always apparent in toddlers. Or, they’re at least not easily recognized by someone who doesn’t have first-hand experience and is only aware of the signs of “classic autism.”
However, when the expectations placed on your child increase (especially social), these signs of autism start to be more evident as your child’s skill set begins falling behind their neurotypical peers.
For example, you may not notice your child’s struggle with social skills until they begin kindergarten, and you realize they don’t interact with the other children the same way the other kids do, or they start having meltdowns when they’re expected to interact or do group work with the other children.
Always Trust Your Instincts
I began suspecting my oldest son was autistic when he was about four years old, but my concerns were initially dismissed. We didn’t start the assessment process until my son was six years old. We finished four months before his 8th birthday; however, even the neurodevelopmental pediatrician missed his diagnosis during the first assessment.
My son wasn’t officially diagnosed with autism until he was 11 years old, even though the signs were always there.
Misdiagnosis (particularly with ADHD or other conditions with overlapping symptoms) is more common for kids with less visible challenges in early childhood.
As a result of his late diagnosis, I feel we missed a lot of opportunities in early childhood to learn and help him in ways that would have been more beneficial for him long term.
It’s my hope that by sharing some of our experiences, other parents in similar positions can advocate for children to ensure they receive the support necessary for success from an early age.
Autism Functioning Labels
Functioning labels are often used to classify autistic people based on their perceived abilities, particularly in communication and cognitive functioning. The most commonly used labels have been “high-functioning autism” and “low-functioning autism.”
- High-functioning autism, sometimes referred to as “mild autism,” typically refers to autistic individuals who have average or above-average intelligence and who may have strong verbal skills but are socially awkward or avoidant. They often require less support in daily activities, and they’re considered high-functioning because their challenges are less visible to others.
- Low-functioning autism is used to describe autistic individuals who have significant intellectual disabilities and greater challenges in verbal and non-verbal communication. They need substantial support in their daily lives. Their challenges are more visible to others.
Why Autism Functioning Labels are Harmful
At one time, it was normal to use functioning labels to describe people with autism. My son would have been classified as having “high functioning autism”; that’s why the signs of autism were missed when he was four and again when he was eight.
We now know that using functioning labels is harmful for a number of reasons. Instead, many experts and advocates recommend a more individualized approach instead of using functioning labels, focusing on specific needs, strengths, and areas requiring support.
This perspective aligns more closely with person-centered practices, which consider the whole individual, including their personal goals, interests, and quality of life.
Reasons not to use functioning labels include:
- Oversimplification: Autism is a complex and highly variable. Functioning labels can oversimplify this diversity by implying a fixed or linear scale of ability. They don’t accurately reflect the fluctuating nature of someone’s capabilities and challenges, which can vary greatly in different contexts and over time.
- Misleading Perceptions: Labels like “high-functioning” can create misconceptions that someone with this designation doesn’t need support or accommodations to be successful. This leads to unmet needs and disadvantages. On the other hand, the “low-functioning” label creates lowered expectations and limits opportunities for growth.
- Stigma and Discrimination: Functioning labels can contribute to stigma and discrimination, as they may emphasize limitations rather than abilities. This can affect how children are treated at school by both faculty and peers.
- Impact on Self-Esteem and Identity: Being labeled in a way that focuses on how you “function” can impact a child’s self-esteem and sense of identity. It can make children feel inadequate and misunderstood.
- Neglects Individual Needs: These labels don’t help people understand and address the specific needs of each individual. Autism affects everyone differently, and a label doesn’t provide enough information to tailor support effectively.
What is Autism?
If you aren’t familiar with autism, this is just a basic overview of what autism is If you wish to learn more, you can read in-depth about the history of autism, facts and statistics, symptoms, and more here.
Autism Spectrum Disorder, or autism, is a neurodevelopmental disorder that impacts brain development, causing most individuals to experience communication challenges, difficulty with social interactions, sensory processing differences, very specific and limited interests, and a tendency to repeat specific patterns of behavior.
The term “neurodevelopmental” refers to the way the brain grows and develops. Although challenging behaviors are often part of 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 their brain development results in various lagging skills, so they need additional support and accommodations, not discipline or punishment for being autistic.
The term “spectrum” recognizes the complex range of abilities and challenges in people with the diagnosis within a continuum of severity. The effects of ASD are lifelong, changing and varying over time, and impacting 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)
Looking back, these are some of the signs I noticed in my late-diagnosed son that I originally missed or didn’t know were signs that he’s autistic.
Remember that everyone’s experience will be unique. Just because your child shows some of these signs doesn’t mean they have autism. They could also be autistic and not display any of these behaviors. As a parent, always trust your instincts and advocate for your child to their primary care provider if you have concerns about their development.
1. Getting Upset Around Large Groups of People:
This happened even as a baby.
On my very first Mother’s Day, my family wanted to treat me to dinner. The restaurant was packed full of other families who were also enjoying a meal with the important moms in their lives.
As soon as we walked into the restaurant, my son started crying inconsolably. I tried everything in my repertoire as a new mother to comfort and settle him down. But, he didn’t stop crying until we grabbed our food in a to-go box and left.
He was only 4 months old.
I chalked it up to being tired that day, but it was more than that. I noticed he had the same response to family gatherings, birthday parties, and any other situation where there were more than a few people present.
Even to this day, crowds of people still make him uncomfortable. There have been Christmases where we’ve eaten dinner and opened gifts in the bedroom at my in-law’s house to avoid the flocks of visitors. We now plan ahead and accommodate him, making holidays look a little different to ensure he’s comfortable in his space.
When he was younger, he was almost never in the classroom with the other students. He’d work in the learning center, in his own quiet learning space. It was easier for him to tolerate crowds if he was there first and people began arriving gradually, but he couldn’t and still can’t, walk into any type of crowd.
2. Narrow areas of intense interest.
This is a common sign of autism. However, when you research the signs of autism online, whenever they mention this sign, they use really eccentric examples of how this trait manifests, such as “memorizes license plates or the TV guide” or “collects insects and can list all species in alphabetical order.”
However, my son’s special interests were always age-appropriate and things that other neurotypical children liked, too. What makes his special interests different is their intensity. When he’s interested in something, nothing else holds his attention.
Evolving Special Interests Throughout the Years
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 who loved a little boy show.
However, in hindsight, there were red flags that it was more than a boy-loving Thomas.
For over a year, he wouldn’t watch anything else on TV but Thomas. We only read Thomas books. He slept with a Thomas blanket and wore Thomas pajamas. He had over 50 toy characters from the TV show, hundreds of pieces of wooden train tracks, 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.
As he got older, his special interests changed. For a while, he loved all things Pokemon. It started when Pokemon Go was released, and it grew from there. We’ve played all the video games, watched all the shows, collected the cards and toys, etc.
He had a Minecraft phase and a Roblox phase. All at age-appropriate times.
Now, as a teenager, his special interest is Taylor Swift. He listens to only her music, watches videos, and reads books about her. He finds a way to incorporate her in all his school projects and he collects vinyls of her albums.
The bonus to having these special interests is that when he meets other kids with shared interests, it makes it easier to build a friendship, something that’s often a struggle. The downside is that a lot of kids have broader, more diverse interests, and for autistic children, their interests may be so intense that they don’t want to talk about or do anything else.
3. Making up his own words
Neologisms are unique words or phrases that individuals with autism create and use. These personalized expressions have specific communicative purposes for the individual, but they usually aren’t understandable to others without context or explanation.
When he was a toddler, my son used to make up his own words for objects. One that I can remember vividly is calling windmills “undoons.”
I can’t tell you why or 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 eventually stopped referring to them as “undoons” and started using the correct terminology.
He still occasionally uses made-up words. 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. He also calls people by unique names; for example, instead of calling me “mom,” he calls me “motherhood”.
At school, if he uses a made-up word, the teacher will ask him to draw a picture of its 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) get inside the back seat.
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, the smell was mild and tolerable, and, at the time, 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 to take those sensitivities 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.
Those severe sensory sensitivities, paired with a lack of social understanding surrounding how his words could hurt the taxi driver, were both due to the fact that he’s autistic and not because he was a rude or heartless child who didn’t care how his actions made other people feel.
5. Frequent ear infections
Until recently, I had no idea that there was a correlation between frequent ear infections and 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 to resolve the issue. His frequent infections didn’t alarm me at all because when I was a child, I had frequent ear infections and also needed tubes in my ears as well.
Ear infections seemed like a normal part of childhood to me because they happened to me, too. My younger neurotypical son had no issues with ear infections whatsoever.
6. Everything had to go his way – Meltdowns and Cognitive Rigidity
If something didn’t go the way he wanted it to go, he had what I thought were huge tantrums. 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. His meltdowns were frequently triggered by his difficulties with transitions and routine changes – two common signs of autism.
I thought it was just toddlerhood.
Meltdowns
A meltdown is an intense automatic nervous system response to overwhelming situations. It differs from a typical temper tantrum and often occurs as a reaction to either sensory overload, emotional distress, or unexpected changes.
Unlike tantrums, which can be goal-oriented and controlled to some extent, meltdowns are involuntary. They are not within the child’s control, and although they can be triggered by something not going their way, it isn’t done to get their way, and it takes time for them to recover and their nervous system to regulate afterward.
Cognitive Rigidity
When kids are struggling with cognitive rigidity, they have trouble dealing with changes in routine or adapting to new situations. This can trigger meltdowns, as mentioned above. However, it can also cause them to get “stuck” when something doesn’t go the way it should, and they become unable to move on until that thing happens the way it was supposed to.
Once, 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 inside, I found him hiding his face in the cushions on the couch.
He’d often hide his face if he felt upset or uncomfortable, so I knew something was wrong.
I realized I had accidentally passed him the wrong bag, so he carried his sister’s meal inside instead of his own.
When your child has autism, swapping bags at the table is not as easy as it seems. I asked him to carry his food inside, so he had to. We had to take his bag and go back down to the car, buckle his seatbelt, unbuckle it, and walk back inside with his own food—in the pouring rain.
7. It was extremely difficult to wean him off the bottle
This is yet another way that cognitive inflexibility can manifest. Resisting and not adjusting well to changes in their routines and daily lives is very normal for autistic children.
In hindsight, I am positive this is why it was so hard to wean him off the bottle. As a baby, he didn’t use a pacifier, so at the time, I thought the bottle was just very comforting and soothing for him, but there was actually a little more to why it was so hard for him to 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.
He wanted to stick to doing and wearing the same things in the same way every day.
Another challenge we had when he was a little bit older was finding the same sneakers in various sizes because he didn’t want to wear any other shoes as his feet grew.
8. Aversion to certain tactile sensory experiences
Do you know how everybody does those adorable cake smash photo shoots for their baby’s first birthday? Not us.
The second my son touched the 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 because he was still a baby at the time, it didn’t raise any alarm bells.
I know now that part of being autistic is having sensory processing challenges.
Sensory Processing Challenges:
These sensory processing challenges occur because the brain has trouble receiving and responding to information from the senses. Sensory signals are not organized and processed into appropriate behavioral responses.
This means children can be hypersensitive (avoids) or hyposensitive (seeks) to various types of sensory input.
Children who are hyper-sensitive may find sensory input overwhelming and might go to great lengths to avoid it. They are more susceptible to sensory overload.
Depending on which sensory systems are affected, avoidance can manifest in different ways. For example, they might cover their ears when they hear loud noises, refuse to wear certain clothing because of how it feels, or be highly picky eaters due to the texture of foods.
Hypo-sensitive children, on the other hand, are under-responsive and, therefore, seek additional sensory input. These kids may not notice when it’s cold outside, might not respond to their name, may play really roughly as though they don’t realize their own strength, and be very hyperactive and constantly in motion.
9. He didn’t have the classic symptoms of autism
Perhaps the biggest reason that I missed the more subtle signs of autism in my son is because he didn’t have those classic signs of autism that you read when you search online.
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 3, he could write his name, recognize sight words, and was beginning to learn 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. Avoiding eye contact wasn’t something he did until he got older and became more uncomfortable in social situations.
This happened over time as social expectations increased and exceeded the limit of what he was able to tolerate.
But remember, autism is a spectrum, and there is no one-size-fits-all way to recognize if someone is autistic.
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.
Leeretta
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!
A
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.
Laura
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!
Maria
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!
Azmathunisa
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.....