We heard it again this past weekend. “No! Really? I would have had no idea. You can’t tell at all.” It was said by someone who has spent one hour every Saturday morning with our son for the past couple of months. It’s the response I get most frequently when I tell people that Jay is autistic – even people who know him on some level. I understand why people react that way.
People expect to see rocking back and forth or hand flapping. They have come to learn that loud behavioural outbursts mean “autism”. They assume that a non-verbal 10 year old or a toddler who is lining up toys and watching wheels spin has autism. Also, that one “weird” kid who is opening and closing the window blinds while all the other kids are playing tag. Yup, definitely autistic.
They do NOT see my boy being chatty and funny and polite and coordinated and engaged and expressing emotion and playing appropriately and making eye contact and being aware of danger – and think that’s Autism. I am not saying this is a good thing or a bad thing. I believe it has both helped and hurt him in the past. I believe it will continue to both help and hurt him in the future.
I just say this to show that autism is not always visible. It’s a neurological disorder (or just a different order) which means it’s a brain (dys)function. How that manifests itself in people varies wildly.
You may be wondering then what does make Jay autistic. How do we know he is autistic if he doesn’t exhibit any of the traditional traits.
- The boy he is today, is not the boy he always was. We have worked really hard to get him to a place where he can live comfortably – in a world that’s not really ready to accommodate him – while respecting and honoring and celebrating and holding tightly onto his uniqueness.
- Even with all the work that we (Jay, parents, school staff) have done, his brain still processes things in a different way from non-autistic peoples – and that is obvious to us in subtle ways on a daily basis.
Jay is fortunate that he has a brother who not only understands his brain but is only a year older than he is so they enjoy much of the same things. They play/work really well together. Outside of that, friendship is hard for Jay. He doesn’t always understand the rules of engagement. He has learned how to navigate a lot of social situations, but children are unpredictable. They seldom follow set rules which leaves Jay confused and sort of playing catch-up trying to figure out exactly what is happening or what is expected. Having a friend means caring about what someone else is interested in even if you are not interested in it. This does not come naturally to Jay. He doesn’t understand why he has to pretend to like something that he doesn’t like just because it will make someone else feel better. To him, this feels like a lie. And we tell him that lying is bad. These are difficult things to explain.
Jay gets very anxious over things that other people can easily shake off. So anxious that it can affect his entire day and night and he will wake up the next day still hampered by the previous days “event”. That event could be: Being 5 minutes off his schedule, having to eat something besides pizza for dinner on a Friday, losing a game of Pictionary or being called handsome instead of cute because in his mind when someone says “you are not cute, you are handsome”, all he registers is “you are not cute” and that’s an insult.
His is a tricky autism. He understands SO much of how the rest of us think. He loves a good joke. He is pretty good at recognizing sarcasm, but there is also a lot he does not understand. He’ll engage in a conversation assuming that whoever he is talking to has all the back story and history about the topic at hand. I often have to jump in to either clarify things for him or add some context to whoever he’s conversing with. I can only imagine what happens when I am not there.
I am glad he doesn’t have tantrums (anymore), but we are constantly trying to figure out what is causing him to behave the way he does. Asking him does help, but words are unreliable.
Here is an email we got from his teacher last week. It’s pretty typical of how life is.
I wanted to touch base quickly about Jay. He has been such a joy to have this year and is always so happy. The past couple of weeks he has seemed a little different – not quite as happy. Last week I wanted to attribute it to being gone on spring break for a week, and not being on a regular routine for a week may have thrown him off, but it continued into this week as well. He seems to be upset coming from [his before-care place] in the morning, and has a very hard time moving on from what happened there in the morning, which I’ve seen before, but I am usually able to help him get over it. He has almost seemed “ornery”, to be honest. He has not been bad in any way, I just wanted to bring it up to you to see if there had been any other changes for him that he’s having a hard time adjusting to, or if you have seen any change in his behavior at home. Also, just to let you know, Jay came in very hungry this morning, and he said he ate breakfast at the [before-care], but he wouldn’t tell me what he had eaten. I suggested he eat the banana from his lunch, which he did, but then later he seemed to get even more upset about food, because it turned out that the breakfast he had eaten had been his lunch for today! I had him buy lunch because all he had left was popcorn. Maybe he’s going through a growth spurt and that’s what is affecting his mood!
Have a great weekend!
I am really so appreciative of his teachers. He’s always had teachers who genuinely care about him and try really hard to help him and they communicate with us when there’s something off.
Only time will tell what any of this means for my little boy and how adulthood will look on him. My little autistic boy who does chores, takes the same tests as all the other kids in his general ed class, can negotiate his little butt off, is usually ok with last minute changes, loves to socialize, isn’t bothered by bright lights, loud sounds or itchy materials, sleeps well and has shown a willingness to try new foods … but for whom there are few “minor” inconveniences. Things are all or nothing. Black or white. Very VERY good or “the worse EVER“.
I replied to his teacher and the below was how she closed out her last response. I really do feel grateful that he has such a supportive team who don’t get annoyed at the things he doesn’t instinctively understand but who try to meet him where he is no matter how many times they’ve been down that same road.
We have talked many times about “being a duck” and letting the problem roll like water off his back. Sometimes it works and sometimes it doesn’t, as Jay isn’t always able to see past the literal meaning of the phrase! 🙂 Jay makes me smile every single day, and I love having him in class. Hopefully he will be back to his “always happy” self soon!
God bless the teachers! That is all.