We started a long and very educational journey through early intervention a couple of years ago with Jonathan was 16 months old and not really talking or making sounds. It turned out to not be quite as straight forward as late speech and, long story short, for those who don't know, we participated in a study at the Kennedy Krieger Institute over the summer and he tested on the the autism spectrum, which, at that point in the journey, was not a huge surprise.
Now, since then, we've gone back and forth with our Infants and Toddlers team on how accurate that was, because it was only a study and he wasn't all that cooperative for some of it. But, I think what what we've concluded is that he definitely has some atypical behavior and social development and, most likely would test on and off the spectrum depending on the day and who was administering the test. So basically, he straddles the border.
Mostly, I really haven't worried a whole lot about this. First off, a lot of the atypical things are issues we had dealt with before with Ben, (who was never diagnosed with ASD, but looking back, I'm pretty sure he might have been if we had had him tested when he was Jonathan's age... at the very least he is SUPER quirky...LOL) So it's not much new for us and we have living proof that some things can be learned or grown out of. Plus, we have SO much support with Jonathan that we did not have with Ben in the form of various county services.
Lately though, things have gotten a little more complicated.
Jonathan is his own person, of course.... and ASD is unique in each and every case. There is a phrase that circulates among the autism community that says, "If you have seen one child with autism, you have seen one child with autism."
Ben was challenging in his own ways with tons of perseveration, sensory issues and eating problems. Social weaknesses, unnoticed before, surfaced around second grade. Although Jonathan's issues also include the perseveration on topics of interest, he has a lot more issues with very poor (and seemingly irrational) social reactions in certain situations. There are very specific ways you have to word things and deal with him or things spiral out of control quickly.
School has become a HUGE issue. HUGE. Enormous. Elephant-sized, even.
His behavior lately has been just hugely difficult and embarrassing. I never thought I'd have the child who hits other kids (for reasons that almost always have to do with his perseveration du jour and the very black and white way he sees the world) and throws toys. I've dealt with separation anxiety freak outs plenty, but his take it to a whole new level. He becomes angry and violent. His teacher told me Friday that he threw toys and pushed chairs and hit her. Eventually he calms down, but in those moments during the meltdown, it's really REALLY awful. She was pretty nonplussed by it... but I felt awful.
I also can't get him potty-trained, for reasons I can't really quite figure out, but they tell me it's normal and to relax. So I have backed off.
Everywhere I turn people who don't get it at all have unsolicited advice for how to deal with his behavior and my answer is, "You just don't understand.... what works for a typical child will not necessarily work with him." We are still figuring out how to manage him... but suffice to say, traditional methods have failed almost 100% of the time.
It's hard for most people to understand because he is NOT what most people think of when they think about autism spectrum disorder. I am discovering that the vast majority of people (even our pediatrician) do NOT really grasp what it means to be on the very high-functioning end of the spectrum. It looks "normal" in most respects.... and when it does come into play, he often just looks like an undisciplined brat of a child or that I haven't been teaching him simple manners like saying hello back to people. I promise you, he is challenging and defiant at times, but he isn't a brat and we are SO consistent with him and work very hard to teach him the appropriate social behavior that does not come naturally for him. If you could see him at his best... one-on-one... he is the sweetest, most affectionate, smart, funny little kid.
School is working SO hard with him and I give them all the credit in the world. They are incredibly good to us. I know they think I'm making more of his issues than I should though... that I worry too much. I just want to fix/improve as much as I can before kindergarten. I also want to spare him at least some of the social issues Ben dealt with. The early intervention teachers keep assuring me it really WORKS-- that he CAN be taught these things... how to make eye contact, how to understand how people are feeling, how to respond appropriately, how to have a conversation, what a friend is.... that other kids are even worth his time and effort. It all just needs to be practiced and taught over and over and over again.
I don't even know where I'm going with this except to say that Jonathan has taught me not to be so quick judge a child or the parents of a child who is behaving inappropriately. Heck, I used to even think, "You can't get your child potty trained by three? You MUST be doing something wrong..." Yeah... he has taught me a WHOLE lot, and for that I am grateful.
I wish more people knew more about what high-functioning ASD looks like or means.... mostly because there are a LOT of quirky kids out there... it's not always full-on ASD, but yeah, quirky is everywhere. I feel like I do a lot of making excuses for Jonathan or explaining him to people and it's exhausting and frustrating sometimes. I feel like people either feel sorry for us (please don't... I wouldn't change my kids at all... quirky is AWESOME... and this difference has a ton of positives too!! I mean, he can READ anything and everything and that's pretty cool, right?) or think we're nuts for thinking there is something atypical about him.... that if they had a few days with him, they could whip him into shape. (believe me, I would love to see you try!!!)
He is starting a little county preschool group next week in the afternoons. I'm really excited about it because it's taught by someone who works with kids just like him ALL the time and totally gets it. I won't have to explain anything or convince anyone of anything or make any excuses for what he says or does. The sole purpose of the group is facilitate social interactions and play between kids for whom it doesn't necessarily come naturally... so I feel like for an hour and a half a week, I can sit and breathe and just watch him grow and learn.
I KNOW ultimately he will be fine... he will grow out of some of the really hard stuff.... I AM bracing myself for a couple visits to the principal's office when he hits elementary school because well, I'm trying to be honest with myself about his strong will. LOL. But he WILL be fine. Just need to get through the next year or two and it's not going to be easy.... somedays, I really feel like it's just getting started.