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 people on the spectrum as well as their parents.
4 Things About Autism that are Gravely Misunderstood
Society as a whole needs to become more aware, and 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 every day and don’t even realize it.
Shouldn’t we, as a society, all be aware of what autism is, so we can put our judgment aside and accept others?
Here are just four of the many misconceptions about autism that I’ve encountered.
“Stimming” is short for self-stimulatory behavior. There are many forms of stimming.
For example, repetition of physical movements, sounds, or repetitive movement of objects. One common stim is hand-flapping. But not all autistic people do this – some play with their hair, look closely at objects, spin in circles, etc.
Usually, if someone is stimming it’s because it’s calming or because it helps them to block out other distressing stimuli. People shouldn’t be forced to stop their stims, and doing so often causes them great anxiety.
Here’s my personal experience with how misunderstood society is in regards to stimming.
One day I went to pick up my son from daycare. His teacher said “Well, his day wasn’t too bad. But at one point, out of nowhere, he stood up and he kept making this strange noise.
He was doing it for no reason. When the other kids were asking him to stop, he didn’t. Then I was telling him to stop and he wouldn’t so I had to take him out of the classroom”
I started to explain what she saw him doing. I said “He wasn’t doing that for no reason – that is a verbal stim”
She interrupted “No it was for no reason. He only wanted to intentionally bother the other kids, everything was fine before that”
It is NOT for no reason. I really wish people understood this.
What stimming is really about
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.
He was using his voice because either he was under-stimulated, or because there was some other sound he could hear that was bothering him, so he was blocking it out with his voice.
The teacher removed him because it annoyed the other children. 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.
The truth is everyone stims, even people who are neurotypical. The difference is that what we do may not be as noticeable, or is more “socially acceptable” to do. Nail biting, twirling your hair, tapping your pencil or foot, are all forms of stimming.
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”
I wish this wasn’t true but, meltdowns are always going to be misunderstood.
There are always going to be people out there who see nothing but a child having a “tantrum” who will puff their chest out and state that child needs “a good spanking” and “my child would never act like that”.
They’ll say the parents are lazy and that they are to blame.
Related: The Ultimate Guide to Preventing Meltdowns
This actually couldn’t be farther from the truth.
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
It may appear to happen suddenly, but there are many warning signs leading up to a meltdown. When a meltdown happens, it’s like a pop can being shaken and finally exploding. There’s nothing you can do now but let it fizz out.
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”, “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.
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, often in the tiny details that most people don’t even notice.
Related: 9 Ways to Reduce Rigid Behavior and Encourage Flexible Thinking
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, the same foods, 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 everyday, 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 anxiety. As the child may begin thinking “Well if you can give me a red cup instead of a blue cup … what else could happen? Will my dad still pick me up from daycare?”
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.
Most people know that one of the main challenges those on the autism spectrum face is communication and social skills.
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 persons ability to speak and their ability to actually communicate and understand.
Related: 9 Strategies to Build Social Language and Conversation Skills
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. This is a challenge we encounter often. I bet this challenge is different for everyone, but there.
Misconceptions About Communication Skills
Most people automatically assume that because my son is speaking so well, he is also understanding well.
There have been times where he’s upset and I do my detective work to find out what is wrong. Then others 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’s 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 something that makes him vulnerable. A lot of adults can’t even do that. Once he even said to me “what if I start to cry?”
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.
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.
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.
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.
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.
Tuesday 30th of April 2019
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.