I would have to say one of the biggest challenges that people on the autism spectrum, and autism parents face is being misunderstood. There are so many things that people just do not understand about autism, until it has touched their lives in some way. This causes so many misconceptions and judgement towards people on the spectrum.
People as a whole need to become more aware, and understanding. Current statistics says 1 in 68 people are on the autism spectrum. I personally suspect that number is higher – but regardless. 1 in 68 people means you probably encounter someone with autism every day and don’t even realise it. Shouldn’t we, as a society, all be aware of what autism is, so we can put our judgement aside and help others?
Here are just four of the many things everyone should understand about autism.
Self-stimulatory behaviour is what is known as “stimming”. It may be repetition of physical movements, sounds, or repetitive movement of objects. It’s usually done because it’s calming or self-regulating. 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 J from daycare. His teacher said “Well, his day wasn’t too bad. But at one point, out of no where he stood in the middle of the room 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”
Its 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. Chances are if J had a visible disability, this would have went 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 our children. The truth is everyone stims, even people who are neuro typical. 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.
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 sensory system is overwhelmed, it can literally become unbearable. It may appear to happen suddenly, but there are many warning signs leading up to a meltdown. When the signs are missed, it’s like a pop can being shaken and finally exploding. There’s nothing you can do now but let it fizz out. Meltdowns are uncontrollable outbursts that may be aggressive and unpredictable.
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. It is a child telling you that they are having a hard time and need help.
Children with autism thrive on a consistent and predictable routine. 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 a certain thing at a certain time of the day or in a certain order. It is a need for sameness, often in the tiny details most people do not notice.
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 assuring to keep things the same in this unpredictable world. 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 sons 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 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 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 with communication or social skills. Social and language skills can vary significantly from being completely non verbal, 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.
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.
However, his receptive language skills are only in the 7th percentile. This means he has a hard time following what other people are saying. He misses the meaning of body language, tone of voice, facial expression, etc. He also has trouble follow complex directions, so it’s best to explain only one step at a time. The hardest part of all is the struggle to express emotions. He can talk about a physical object with his vast vocabulary 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 would 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.
Communication skills vary different 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.
What are some things that you believe everyone needs to understand about autism? Tell me in a comments.
Or, if you are just learning, is there anything you didn’t understand about autism that you do now?