My son, Russell, has an ASD diagnosis. It’s been an interesting path to get here, but here we are. It’s been a journey full of twists and turns, and unexpectedness.
First Of All
I’m going to start by saying that I was initially vehemently opposed to his having any kind of diagnosis. The first questions around ASD were raised by one of his first teachers. My attitude was simply that she was straight out of training, and maybe too inexperienced to deal with a child who didn’t follow her lesson plans exactly. I still believe that at that point in her career inexperience was a big factor in why she wanted him to be diagnosed.
Even with her pushing, it took many more years before he actually got a diagnosis. I spoke with the head of his school. I explained that I have friends with ASD kids, and that if he did indeed have ASD then it was at the milder end of the scale. I explained that my friends experience was absolutely influencing my view, but that I didn’t want a diagnosis as I didn’t want to see my son written off as a kid with special needs. I wanted him supported. I wanted a teacher who could adjust to how his brain worked, and how he learned.
School Life And Support
We managed to organise support for him under a different heading. His school life was as close to normal as I could get it. He had birthday parties, and was invited to birthday parties. He had some issues – he didn’t like people touching or moving his stuff, he wasn’t a fan of football when all the other boys were. However, for the most part, his school life was quite uneventful. His support teacher kept him up to date, and taught him in the way he responded to.
Backed Into A Corner
We had appointments every so often with various professionals, and then my hand was forced. He had an appointment with a clinical psychologist. The idea was that this man would assess Russell, and look into things like social interaction, concentration etc. Instead, he ended his block of five sessions by saying that he could not confirm that Russell was entitled to the support he was getting under the current heading. He said that if anyone asked if he felt that Russell should continue to receive support under that heading, then he would have to say no. I wondered if anyone would actually ask, but apparently there would be questions. I asked if he could recommend another heading. His response was that that wasn’t his job.
The psychologist moved on to ask me if I could leave my job in the middle of the day and go home for an hour or two. He said that it would show Russell that I was there. I asked how it would show Russell anything as he would be at school. I asked him did he take two hours off every day to go home to his children. He did not. I asked why he would suggest that I should. He started giving me statistics about one parent households (which we were at that point). I interrupted him. I told him I was leaving as I had a lot of phone calls to make, as he was basically telling me that not only was he pulling the support away from my son, but he wan’t in a position to put an alternative in place.
As soon as I got home, I called the head of the school. We agreed that we were at the point we didn’t want to be at, but we were going to have to get an official ASD diagnosis. We put the wheels in motion, and scrambled. We called in every favour we had with every possible person we could think of. We had to be quick, because any break in support could have been disastrous for him. Eventually, Russell was diagnosed with ASD.
There was no real change for him at school. He had the same timetable, and the same support teacher. The real changes came socially.
Since he got his diagnosis, I’ve not hidden it. In fact, I’ve been quite vocal about my distaste of the system. I’m not happy that we spent the time, effort and money involved in avoiding this conclusion, only to have someone force me into a corner with it. In hindsight, it was probably quite stupid of me. I stood at the school gates, and openly discussed the fatal flaws in the system of assessments, and the learn by rote system we have.
Since his diagnosis, Russell has been invited to two birthday parties, if you include his sister’s. Most of them weren’t a big event, so there had been many other children that also hadn’t been invited. One of them, however, invited every boy from his admittedly rather small school except him, and his friend, Rob. I’d find it difficult to believe that this is some sort of oversight, or accident.
The other big change is that my daughter, Olivia, is choosing her secondary school. We’re looking around, and we want to go with one that would be suitable for Russell as well. His current school, and I want him to mainstream with support. One of the schools we looked at were very pushy about their special education program. I explained that his ASD is mild, that I wanted mainstream school, and that he has two years until he’s going to secondary school. It didn’t deter them in the slightest. They repeatedly told me about all the benefits he would get out of special education. I said that I didn’t feel that he needed it, and that I would be very uncomfortable with the idea of us using resources that may be more needed elsewhere, but they just continued as if I hadn’t said anything.
This was exactly the type of situation I had wanted to avoid when I didn’t want a diagnosis. We’ve had all this ‘help’ pushed on us, and we don’t need or want it. These are valuable resources for parents who are genuinely struggling, and children with much bigger problems.
Russell has some very mild social anxiety, and concentration issues. He’s easily distracted. He’s not disruptive. He’s a daydreamer. He doesn’t struggle with the work itself, only the concentration required. He’s not anti-social, but he can miss social cues. He doesn’t understand some of the inferences when people speak to him.
Overall, I find him very manageable. I’d much rather see these resources offered to the single mother who is a step away from tearing her hair out, the father who works overtime to afford extra help, the families who are finding it difficult.
I’m not saying that Russell doesn’t have challenges, or that parenting is easy. I’m not sure how I feel about his exclusion from parties. I’m not sure how I’m supposed to deal with it. I can manage his behaviour, but how do I cope with the behaviour of people who are supposed to be adults? How do I explain to a kid, admittedly one who is approaching teenagehood, but still a child, that some people are simply ignorant? That they’re uneducated? Am I supposed to tell him that his diagnosis means he can coast through his education? That he can take the easy way out? Am I supposed to tell him to expect this kind of behavior for the rest of his life?