Over the years, we’ve made some progress where Autism Awareness is concerned. Many have seen advertisements and articles and news-clippings, they’ve heard the word, they know autism exists. I think we’ve hit a plateau, however, in that awareness is not enough.
Firstly, being aware of autism is not the same as understanding what autism is. Watching “Rain Man” or reading “The Curious Incident of the Dog in the Nighttime” give insight into two fictional autistic characters, but we can’t expect two individuals to represent a whole. You don’t understand autism simply by watching a movie or reading a book. A child or adult with autism is every bit an individual as anyone else. The “spectrum” for autism is not cut and dried.
If you met my son for one minute, you wouldn’t know he had autism. If you met him for one hour, you might notice he isn’t what the medical world calls typical. If you spent the day with him, you might walk away feeling conflicted over what to make out of the experience. You might think . . . maybe it’s autism. Then you might quickly dismiss that idea in the same way I did for years before my son received his diagnosis. But if you lived with autism prior to that or were a professional in the field, you would know.
It’s not easy when you have a child very few can understand. We’ve been through many battles on behalf of our son. Before he turned four, he wore his autism on his sleeve. He fit the stereotype. He wasn’t talking, couldn’t potty train, and had severe sensory aversions. His motor skills were delayed, he was stimming, he wouldn’t make eye contact, he was banging his head on the wall, he screamed if you touched him, and avoided being around people at all costs. When his autism was more apparent, we received a lot of support and compassion. People had heard about autism, they were familiar with the standard stereotypical description, and so it was clear to them that our son’s behavior was stemming from this.
Over the next few years, however, the therapies he’d started at eighteen months old began to pay off. We also started him on a gluten-free, casein-free diet, which helped his digestive system and some of his behaviors a great deal. That said, this goes back to every child being an individual; I’ve met children with autism who have made progress without the diet, and children who the diet has had no effect on. The important thing is that we looked for therapies that would work for our son and that he eventually learned some ways to interact more comfortably in this world: he has his headphones if there is too much noise, and he knows what to ask for if he needs help calming down (and he’s now able to ask for it).
Unfortunately, as our son made progress, we saw all the support and compassion we previously received begin to evaporate.
Because he makes social efforts, because he is talking and potty trained and starting to make academic progress, the school system stopped taking his autism into account. People treat him (and us) like he’s a bad kid. Kids throw sand at him at school. They tease him. Teachers think he’s mentally disturbed or defiant. They discount his struggles because his autism isn’t as “severe” now. The constantly compare him to other children with autism, stating how he does things some children with autism “can’t” do (I beg to differ!). Then, when he does something that clearly stems from his autism, they handle it as though he were intentionally trying to upset them.
The first time I became aware this was happening was when my son refused to participate in circle time. Now, this was nothing new. My son has always hated the group activities at school, and I’ve always believed this to be sensory. His teacher asked why he didn’t want to participate, and my son said it was because he wanted to read. They asked why he wanted to read, and he said, “Because reading is fun.” (You know, the exact words they had been saying to him for over a year.)
As soon as I heard this story, I knew something was off. At the time, my son did not like reading. I figured he just didn’t like the noise and thought that if he said he wanted to read, he could get out of participating in circle time (because they were pushing reading so much then). Then he could avoid the noise.
When he got home, I was careful not to suggest this reason to him, while still digging a little deeper into what was going on. I told him, “Reading is fun, I agree. Isn’t circle time fun, too?”
He said, “No! It’s too noisy! And now there are two new kids in class and it’s going to be even louder!”
The school, however, insisted it wasn’t sensory and that he was just being defiant because he wasn’t getting his way. While I imagine he was being defiant while not getting his way, I expected that a school trained in supporting autistic children would have been able to work out the real cause with him and then give him the proper tools to handle what he was going for. They can’t do that if they think he is just behaving that way for no reason.
However, it’s not just the school system that so readily ignores his diagnosis. We’ve (at times) even had a hard time finding other parents of autistic children who will accept our son. I’ve seen circles where autism seems to be the only thing people can use to identify with one another, and if your child isn’t “autistic enough,” you won’t find support there. They’re offended your child has the same diagnosis when clearly their struggles exceed yours.
I think it’s important to keep in mind that although there are people out there who have more struggles in life, that doesn’t make the struggles of another person harder. It doesn’t make their struggles trivial. Looking normal on the outside doesn’t change what a person goes through internally. Autism isn’t a contest and it’s not about being politically correct.
It became clear to me through all of this that autism awareness needs to be about more than giving people the chance to have a politically correct response to “obvious autism.” We need to understand, accept, and appreciate these individuals.
I worry for people like my son, who, due to lack of understanding of the full depth and reach of autism, are shunned almost everywhere they go, even in the places where they should be able to gain some acceptance.
Ideally, people won’t only be familiar with the word Autism or the stereotypes currently attached to it or even limited by their own personal experiences with Autism, but will instead reach a place where they really understand it—or at least try to. Where maybe when they meet someone who might have autism, they won’t spend their time measuring them against their own pre-conceived standards and ideas, but will rather view them as the individual they are: as someone who may be different from them, with unique strengths and weaknesses, but who is as valuable as anyone else in this world.
This isn’t about checklists or measures. It’s not about tolerance, though sometimes I think that would at least be an improvement from where we are now. This isn’t about being politically correct. It’s about understanding and accepting that a person with autism is still a person. They aren’t a novelty or a checklist. They are individuals just like everyone else in this world.
While some things might be harder for them, you might not always see those struggles. That doesn’t mean they aren’t there. If you want to understand someone, you have to take the time to get to know them. That is true of anyone. You can’t read an article and magically understand every person diagnosed with autism. If you really want to understand them, you need to get involved and do so with an open mind.
When you do, you will see the world in a new way. You will understand more than autism; you will understand another person and their unique views and solutions.
Awareness is only the first step. We need to move forward to understand and to accept. Those who do, I know, will appreciate what they learn and appreciate the people who showed these things to them.
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Rebecca Hamilton is the author of the bestselling paranormal novel The Forever Girl. She’s a mother of three and has been advocating for autism awareness for several years. You can learn more about her and her books at www.beccahamiltonbooks.com