4 Things About Autism That Are Often Misunderstood
I would have to say one of the biggest challenges people on the autism spectrum and their parents face is being misunderstood. There are so many things people just do not understand about autism until it has touched their lives in some way. This causes so many misconceptions and judgment towards people on the spectrum as well as their parents.
Society as a whole need 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 things about autism that are frequently misunderstood.
Self-stimulatory behavior is known as “stimming.” 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.
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. 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 disabilities.
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, and 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 I’m afraid 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 they are to blame.
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 behavior.
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 but let it fizz out. Meltdowns are uncontrollable outbursts that may be aggressive and unpredictable. It’s not a planned behavior the child is using to get their way, and it’s not a discipline problem.
I have heard things like, “He thinks this is a game,” or “He just doesn’t want to listen today,” “He is intentionally being oppositional and defiant,” and “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 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 and adults with autism thrive on consistent and predictable routines. I think this is one of the more commonly known aspects 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 most people don’t even notice.
Entering a classroom, you could see a child become distraught for “no reason,” but he actually 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. If your child asks for a drink of milk and you pour that milk into a red cup instead of the blue cup they use every day, and they get upset, that is rigidity. To a neurotypical 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.
Most people know one of the main challenges those on the autism spectrum face is with 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 surrounding 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 literally 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.
His biggest challenge is with expressing 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.
Most people automatically assume that because my son is speaking so well, he is also understanding well. This is simply not the case. 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 person is nonverbal, it does not mean they don’t understand you. And just because a person is verbal, it does not mean they do understand you. Do not make assumptions.
I hope you’ve learned something new about autism from reading this story. Maybe the next time you see a mother struggling at a grocery store, or say “Hi,” to a child and they don’t respond, you will think of this.
If you’re autistic or the parent of an autistic child, please share your stories in the comments so collectively we can teach society to be more understanding.
Getty image by ThitareeSarmkasat.