My (Fill in the Blank) is Autistic – Autism

It’s a “mixed bag.” Pretty much anybody who’s paying attention is aware that someone (maybe more than one someones) they have met casually,  know a little more closely, or have charge over, is Autistic.

The reason it’s such a mixed bag is, on the one hand, it means folks are aware that “Autism is a thing.” It makes it so people can say, “My friends younger brother’s son is Autistic.” Or, “my daughter is Autistic.”

Further, it makes it so there’s at least a chance that action is being taken to help the child (or adult) to “cope with” his or her Autism.

Granted even in the mildest forms of Autism— understanding what the person is dealing with being difficult at best—chances are, well meaning attempts to “help” that individual are based on at best incomplete, if not entirely bad understandings. In the end though, you have to give those who are trying, kudos for trying. That’s the case even if what they’re doing is totally contrary to what they ought to be doing.

Then there’s the “other hand.” Most people have two problems. The first is limited experience with Autism. They know one or two folks who are Autistic, and of them, one may be a child (meaning they experience the “effects of” Autism on somebody who has been “somebody else’s problem until recently, and has had time to mature substantially as a result of simply growing older). The result is, they think they understand Autism—and to be fair, they sort of do, but only after the work of parents, teachers, daycare workers, therapists and potentially many others.

The second, is that they tend to treat all Autistic folks the same. Based on my experience, this is more or less to be expected. Why? Simply because most folks are not prone to “know” folks with more than “mild” Autism. I have zero numbers on this from a “data-centric perspective,” not that I haven’t tried to get any. The truth is, those I can get, I don’t really trust. Maybe in time, this information will become more accurate, but for now, I’m not at all “sold on” its correctness. The point though is, I’m pretty sure the vast majority of “modern day” Autism diagnoses, are of “mild” Autism. And honestly, I’m pretty sure some (maybe a good many) of those are misdiagnoses.

The point is, that most folks have never been introduced to a child with more than “mild” Autism. Oh they understand that Autism is supposedly “spectral” in nature. What they don’t “get,” is what that means.

Those who know me, are aware that I am the father of a “moderately” Autistic child. They may or may not (more likely may not than may) be aware of what that means. When you tell me about your (mildly) Autistic son, or nephew, or cousin, or friend’s niece’s daughter (who you see four times a year, for a couple of hours at a time or so, for many—obviously more or less for others), you invariably recount a number of comparatively minor quirks or issues the child deals with on an ongoing basis. Don’t take me wrong, they’re serious challenges for the child—particularly when they’re going through them.

If the child has had the chance to gain a few years, where they still deal with various issues, the have likely gotten to the point where it’s virtually impossible to tell they’re Autistic at all.

They had issues writing the letter C. They were awkward in social situations. They were “late” in potty training. They had issues finding the correct words to use.  They laughed at the wrong times and didn’t “get” the jokes of others. They were the one “left out of” games, because (innately) other children would intentionally not include them. None of this is “fun.” Not one of these things, does a parent want to say happened to his or her child.

All that having been said, allow me to take just a moment to relate some experiences from the parent of a child who’s not “mildly” Autistic.

When my child was around eighteen months of age, he began to “regress” in simple but substantial ways. His lingual and communication skills “went backwards” in a pretty serious manner To be fair, I (and probably others) worried he might be “hearing impaired” prior to that time. You would talk to him and he wouldn’t seem to notice. When you would shake most rattles near his head, he would not turn to look for the source of the noise.

As he got older, it became more obvious there were other “problems.” He would do things one might expect of a person with Obsessive-Compulsive Disorder. For example, given the opportunity, he would spend hours (literally) opening a door, going through the door, closing the door, opening the door, going back through, closing the door. You get the idea.

At seven years of age, my child still cannot read. Teachers, therapists and of course I, have been trying to “rectify” that, as yet, to no avail. He can’t write in any meaningful way. When other kids played games like “Hide and Seek” or “Tag,” he had no idea the rules, and when he was “included” at all, it would be decided he “didn’t want to play” because he couldn’t understand how to do so. These days, he sort of “gets” the rules to simple games.

When I started writing this, I was afraid I would not have enough to say. Now I see that I don’t have space to complete it. As a result, allow me to “cut to the proverbial chase.”

The main takeaway is this. Just because you know one, two or even many children with “mild” Autism, doesn’t make you an “Autism expert.” Chances are, you have little idea what a parent of children who are “more than mildly” Autistic—or the children themselves—have gone, or are going through. The fact is I, as the parent of a “moderately Autistic” child, likely don’t entirely understand what another parent with a “moderately Autistic”—much less a “severely Autistic”—child is dealing with (and has dealt with). Yes, we’ve probably tried your “tips,” if it was even possible to do so, in fact, we may well have some tips for you (and that’s particularly true if your child is younger than our own or we have a good deal more parenting experience overall)..

I know that most folks will never even see this. I know that those who do, will likely not internalize it, or will forget what was said over time. That’s life.

Nonetheless, thanks for reading, and may your time be good.

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