This Is What Life Is Like In The Grey Areas Of The Autism Spectrum

by Jennifer McCue
A father in a blue shirt playing with his son in a blue shirt that has autism while lying in a bed

Last summer, my older son, then 5 ½, went to school. It’s called “ESY” in New Jersey – Extended School Year – and many kids like my boy, who has type 1 diabetes, autism, ADHD, processing disorders and/or learning disabilities attend such programs.

For those who are unacquainted, the primary purpose of ESY is to provide continuity, so the children have minimal regression over the long summer break. It’s not “summer school” in the traditional sense. No new skills are taught, but the previous school year’s skills are repeated, services like speech and occupational therapy are still provided, and for children who need the routine, or for over-extended parents and caretakers, the program is often a blessing.

This year, when we went for the IEP meeting to revise his goals for next year, my son’s [most excellent] team informed us that he didn’t qualify for ESY this summer. Our school district changed the program a bit from last year, and my son had exceeded his expectations for this past school year, so they all felt it would be more harm than benefit for him to attend the program; the recommendation was to send him to “regular” camp with neurotypical kids, perhaps a diabetes camp if it was possible (my boy also has type 1 diabetes).

This is what we’re supposed to desire, right? We are supposed to want our kids to be “typical,” aren’t we? So why was this news giving me such mixed feelings?

In addition to not needing ESY this year, it has been determined that he’ll mainstream quite a bit more this coming school year. In IEP-speak, he has been increased from “less than 40%” of his day to “40-70%” of his day. In addition to his “specials,” for which he was mainstreamed in kindergarten – art, music, library, health, computers, and gym – he’ll be with a regular first grade class for math and science this year, as well. He’ll stay with his LLD (Language or Learning Disabled) class for all writing and reading-based subjects, and social skills. Again, this is great. It’s progress! At least, it’s supposed to be, right? Why don’t I feel more excited about this?

I have no illusions about my son or his abilities; he probably has a higher IQ than me, and the way in which he comprehends the world, when we catch a glimpse of it, is nothing short of incredible to me. It’s more likely that I underestimate him than overestimate him, to put it another way, so I’m sure that, academically at least, he will be fine when September rolls around and first grade begins.

But socially? Without camp, how on earth would I provide the social interaction and regimented schedule he needs, while still allowing for a fun family summer? And what will it be like for him when he integrates into the regular class each day next year?

It’s this living life in the grey area that is so difficult for me. Uncertainty and anxiety are constant states of being in our house, and it gets exhausting. My son has a variety of special needs, all of which work together to make him the individual he is. Every decision we make for him considers multiple levels of functioning, all of which affect the way he learns.

Which aspect do we prioritize, the diabetes or the autism? Well, that depends on the situation; sometimes it’s one, and sometimes it is the other. The trickiest part is knowing when to push him, and when to fall back, because he is very intelligent, and he is perceived as “high functioning,” but on many occasions, that doesn’t matter at all. The difference between him and his neurotypical peers is truly like night and day.

We field a lot of questions and comments from folks who, mostly, mean well, but don’t really get the complexity. For instance, “Oh, he has to go to the nurse for all diabetes care? He can’t do any on his own? My t1 was doing her own finger sticks by five years old!” No, he cannot do it unsupervised. You think we don’t push him enough to take care of his own diabetes? You’re right, we don’t push him at all! He will deal with diabetes his entire life, unless a cure is found, so while he is little, why not let the adults worry about it and lighten his burden a little, mmmmkay?

And then we get, “He speaks and interacts so well, is he really autistic?” He absolutely is, would you like to see him have a meltdown? Since he can pass for normal sometimes, or perhaps behave just a little “odd,” we get, “Maybe he’ll grow out of it, don’t you think? Look how good he is!” Yeah… no. He’ll just learn to mask his behaviors and idiosyncrasies even better as time goes on.

What I worry about the most though, and why I ultimately am glad to have kept him home this one last summer, is what happens when my sweet, sensitive boy becomes the target of a bully? Will he even realize he’s being picked on? It will most likely be from someone he considers a “friend,” because he doesn’t yet recognize when people are being undercover shady. And it’s bound to happen, because, let’s face it, my boy is a funny bunny. He’s weird. We embrace it. After all, I’m weird too, and so is his dad.

How do I protect him from being targeted by some kid whose parents still find it acceptable to use the R-word: while standing on line to get into his kindergarten celebration, someone standing in front of us was looking at the program, saw the listing for the class of only six children, and said rather loudly, “Oh, that must be the retard class.” I mean, really? It’s 2018 and you’re still using that word? The guy was extremely lucky that my husband did not hear him say it, but if parents are saying it, guaranteed some kid is going to say it sooner or later.

In the end, I am exceptionally proud of my son’s accomplishments this past school year, and I’m enjoying getting to “sleep in” this summer. We do some academic work each day, we read a LOT, and I have him at the park or the pool and playing with “normal” kids as often as I can. We’ll prepare him to deal with “normal” kids as best we can, and in the meantime, we’ll hold his hand and protect him from whoever we might need to. Living life in the grey area isn’t any of our strong suits, but it’s where we find ourselves, and even with all the uncertainty, life here is pretty darn great.