What’s inside this article: We’re setting the record straight about four common misconceptions people have about autism.
One of the biggest challenges that people on the autism spectrum and their parents face is being misunderstood. There are so many misconceptions about autism.
This leads to judgments towards autistic people, and the parents of autistic children.
Society as a whole needs to not only become more aware but become more accepting of autistic individuals.
Current statistics say 1 in 68 people are diagnosed with Autism Spectrum Disorder. This means you probably encounter someone with autism more frequently than you realize.
So, here are just four of the many misconceptions about autism that I’ve encountered.
1. Stimming
Picture this: You’re in a room with a loud, buzzing light. To others, it’s barely noticeable, but to you, it’s overpowering. How do you cope? This is where “Stimming,” short for self-stimulatory behavior, enters.
Whether it’s hand-flapping, playing with hair, or even spinning, these are mechanisms to block distressing stimuli or to aid self-regulation.
What stimming is really about
Let me share a poignant, personal story. When I went to pick up my son from daycare, his teacher commented on a ‘strange noise’ he’d made, dismissing it as a deliberate attempt to annoy others. The reality? It was a verbal stim.
My heart broke thinking of my son using his voice to block out something disturbing, being misconstrued as intentionally disruptive.
He was not trying to bug other children. In fact, that’s probably one of the last things he wants to do because he wishes he had friends.
He was self-regulating, and he was punished for it.
If my child had a visible disability, this would have gone very differently. If this were the case, the teacher would have been explaining to the other kids that he couldn’t help it or that he needed to do it, and wouldn’t be telling him to stop or removing him.
Situations like this are directly caused by people within our education system lacking the proper training to be responsible for children with special needs.
And here’s a revelation: We all stim!
The difference lies in what society deems “acceptable.” Nail biting, hair twirling, and foot tapping are common ways neurotypicals stim.
Lamar Hardwick described stimming by saying:
“Stimming is like turning down the radio when you think you smell something burning. Its a way of turning off the other senses”
2. Meltdowns
I wish this wasn’t true but meltdowns are always going to be misunderstood.
Meltdowns stem from neurological overload, a point where the brain’s action control ceases, and fight-or-flight instincts prevail. Imagine a can of soda, shaken to its limit and finally bursting. It’s a cry for help, not a disciplinary issue.
This is not a child “playing games” or being “intentionally defiant”. They are overwhelmed and exhausted by the surge of emotions they cannot control.
Related: The Ultimate Guide to Preventing Meltdowns
Tantrums Vs. Meltdowns
There is literally a neurological difference between a meltdown and a temper tantrum.
People need to understand that when a child’s system is overwhelmed, the part of the brain responsible for controlling your actions shuts down. As a result, their fight or flight instinct takes over, and they have no control over their
Basically, meltdowns are uncontrollable outbursts that may be aggressive and unpredictable. It’s not a planned behavior that the child is using to get their way. And It’s not a discipline problem.
I personally have heard many times things like: “He thinks this is a game,” or “He just doesn’t want to listen today,” “He is intentionally being oppositional and defiant,” or “He needs more discipline, so he knows better.”
The list goes on.
But a child having a meltdown does not want to behave that way — it is physically and emotionally draining to experience this. It’s not a game or acting intentionally or used as a method of getting what they want.
A meltdown is a child telling you that they are having a hard time and need help.
3. Rigidity
Children with autism thrive on consistent and predictable routines. I think this is one of the more commonly known “symptoms of autism,” but it’s often misunderstood what this really means.
Rigidity is not as simple as needing to do the same things in the same order every day. It is a deep need for sameness and predictability, often in the tiny details that most people don’t even notice.
Related: 9 Ways to Reduce Rigid Behavior and Encourage Flexible Thinking
It’s Grounding
Entering a classroom, you could see a child become distraught for “no reason,” but what actually happened is he noticed his desk was shifted 2 inches by the custodian the night before.
It’s grounding and reassuring to keep things the same in this unpredictable world. There is so little that children can control.
Other examples include not wanting to wear new clothes, insisting on having the same book bag and lunch bag, eating the same foods, only drinking from one particular cup, etc.
Once, something spilled in my son’s lunch bag, so I sent his lunch in a plastic bag while I cleaned it. He didn’t eat that day because he would not take food from a different bag.
Related: How to Provide More Structure to Help Your Child Thrive
If your child asks for a drink of milk and you pour that milk into a red cup instead of the blue cup that they use every day, they get upset. That is rigidity.
To an adult, it may seem trivial, and you may try to reason with your child. “The milk tastes the same no matter what color the cup is.”
But to a child with autism, this just makes the world seem even more unpredictable. It can cause extreme anxiety, and meltdowns – which people interpret as a tantrum.
Consistent grounding events and routines can help a child with autism feel comforted. When changes do need to happen, there are ways you can make transitions easier so it is less upsetting.
4. Communication
While communication challenges are widely recognized in those with autism, the depth of these challenges is often overlooked.
Social and language skills can vary significantly from being completely nonverbal to having a superb vocabulary. However, there are a lot of misunderstandings between a person’s ability to speak and their ability to actually communicate and understand.
My son’s vocabulary was tested and found to be in the 99th percentile. This came as no surprise to me because he was speaking in small sentences shortly after his first birthday and hasn’t stopped since.
He talks from the moment he wakes up until the moment he falls asleep. It’s the main reason I missed the signs of autism.
However, we learned that his receptive language skills are only in the 7th percentile. This means he has a hard time following what other people are saying.
Additionally, he misses the meaning of body language, changes in tone of voice, facial expressions, etc. He also has trouble following complex directions, so it’s best to explain only one or two steps at a time.
The hardest part of all is the struggle to express emotions. He can talk about any physical object with his huge vocabulary and language skills. But he can’t use those words to describe abstract thoughts like how he is feeling.
Misconceptions About Communication Skills
Most people automatically assume that because someone can speak well, they can also understand well. However, receptive language and expressive language are two entirely different skill sets.
There have been times when my son was upset at school, and I had to do my detective work to find out what was wrong. Then, the teacher will say, “Why didn’t he just tell me?”
The answer is simple: he can’t.
He is not willfully refusing to tell others what he is feeling; he just can’t do it. He can’t take those thoughts from his head, and initiate a conversation with someone, and tell them what he’s feeling.
A lot of adults can’t even talk about their feelings and what makes them vulnerable, yet we expect children to automatically have this ability.
Communication skills vary significantly for everybody, but the main thing people need to understand is this: Just because a child is non-verbal does not mean they DON’T understand you. And just because a child is verbal does not mean they DO understand you.
Do not make assumptions.
Let’s Break the Misconception Bubble
What’s your takeaway about autism? Are there misconceptions you’ve had that have been shattered? Or newfound realizations you’d like to share? Let’s dive into this conversation together.
Caitlin
Friday 27th of September 2019
I'm autistic. And people need to understand that it is nothing personal if someone with autism is "ignoring you". There is a difference between ignoring and becoming non-verbal when your stressed. Sometimes I swear I say something or respond but nothing comes out. I get sensory overload and it becomes very hard to speak. I have to force myself to speak. So no they are not ignoring you. They don't mean to offend you if they have sunglasses on inside. Or if the have headphones on. Or their hoddie up. Or if they refuse to eat the meal you prepared. Or refuse to wear certain clothes. Or even respond right away.
It's nothing personal, the autism brain is just different and processes things differently. When they wear sunglasses inside maybe they are sensitive to certain colors or bright lights. It literally hurts their eyes. Or even gives them a headache. For me, I can't look at strong swirling colors. it makes me sick and gives me a headache. If they wear headphones or listen to music constantly. Or even has their hoodie up all the time. Maybe they are just sensitive to noise and it's too loud. to overwhelming. for me its the quality of sound. how it echos, how loud it is, how id surrounds, or not. that combination is what makes it overwhelming. If they refuse to eat certain foods, it's not necessarily that they don't like them. It could be they are sensitive to the texture. It makes the gag or throw up. Or clothing or touch the same thing. it doesn't feel soft enough or it hurts their skin. When people touch me or my sister, who is also autistic, the touch itself no matter how soft or gentle hurts or feels uncomfortable. for me its like electricity touching my skin. For my sister, she says it feels like an exposed nerve. So they aren't trying to upset or offend. They need, we need, understanding that it's not personal. And that we're trying our best through sensory overload.
Nicole Day
Friday 27th of September 2019
Thanks for sharing your experience Caitlin. I think this is SUPER helpful for a lot of my readers because they're not autistic, they are parents. So, hopefully they read this and gain some more insight to what it's like. :) Thanks again.
Trena
Thursday 16th of May 2019
I cut my son’s hair while he is napping. Or I do a few snips in the tub as I am able. My other children call it his man mane and we figure he is like Sampson and doesn’t want his hair trimmed. It’s just who he is and we work with it so he is comfortable instead of trying to make him conform to what we think he should we go with his groove. Busy family but there isn’t anything that can’t be done in love.
Brenda. Newman
Monday 22nd of April 2019
My grandson is going through the testing for autism. His parents have been told he's either developmentally slow or autistic. He doesn't talk well and not many words. He's 4. He has a duster that is 12, another one that is 3 and a younger brother that is 18 months. If something doesn't go his way he throws himself on the floor kicking and screaming. I'm old school and never dealt with anything like this. I'm an only child, and I've had 2 kids both of which are extremely intelligent-- this child's dad has an extremely high IQ. When this child gets his hair cut it's the most hurendous thing you have ever seen. To date totally unmanageable. Any suggestions? I might add this child's parents both work full time, both are going to college full time and have been for some time. They are looking at a move to Texas from Ohio -all for better jobs. My sons an engineer and his wife soon will be a nurse Practitioner, these are very time consuming. This is not going to change. I don't know enough about what's going on to understand. I'm seeing these swings that are called therapy swings and wonder if they can actually work.
Nicole Day
Tuesday 30th of April 2019
Hi Brenda,
On the hair cut challenge - my son told me when he's getting his haircut, that it feels like every tiny hair that falls onto his neck and around his face feels like a shock so it feels like he's getting 100s of static shocks all at the same time. He is more sensitive to touch and because of this haircuts were always really hard. We've gone to the same barber his whole life so he's getting more and more comfortable with it, and the barber works fast and he gets a prize at the end. Some parents honestly cut their children's hair while they're sleeping.
As far as the therapy swing goes - I actually have one coming in the mail any day now which was given to me as a gift from Sensory Scout. I also have a post about how swinging can benefit autistic children and it includes a list of 10 therapy swings that are under $100. You can read that post here.
Children with autism some times don't speak much but they can still be highly intelligent. It's hard to express your intelligence when you don't speak but that lack of verbal ability isn't caused by a lack of intelligence. It's generally an issue with processing between the speech centers in the brain, working memory, and motor planning, so the words get lost somewhere along the way. However, most autistic individuals do eventually learn some form of communication. Your grandson may benefit from using PECS (picture exchange communication), or some basic sign language to help him communicate better. Usually, when communication improves, the meltdowns decrease.