That feeling that there’s something “different” about your child is a familiar one to all parents. But when it becomes more than just an irrational fear, what we need most of all is honesty and support. For too many families where the autism spectrum is concerned, however, neither of those are quickly forthcoming – certainly not based on the experiences my family has had over the last seven months.
There had been some early signs in my four-year-old son’s life that we’d largely ignored. He was slow to speak, he never really enjoyed playing with other children, and he struggled with noisy places. But the trait of his that most powerfully pushed us toward talking to someone about it was his utter aversion to breaking from routines and expectations, and it all came to a head on my dad’s birthday. We’d planned to spend some time at my parents’ house and then go to a shopping center so my wife could try on a new dress for a wedding. We ran out of time for the latter, so we headed for home instead. Our son had no reason whatsoever to look forward to the dress shopping, a chore that meant hanging around in a boring clothes shop with a bored daddy. But when we got home, the change of plan led to a huge meltdown. He screamed and lashed out when I brought him into the house from the car – loud enough so that people halfway down our road probably looked out of their windows, never mind our actual neighbors. Once inside the house, he was clearly out of control, howling and kicking and punching and biting and, worst – and most dangerously – of all, trying to get back out of the house. I had to lock the front door. He tried kicking his way through it. It was terrifying and heartbreaking for us. I can’t imagine what it felt like for him.
There had been other times before that, but never quite that bad or quite so obviously triggered by something that made so little sense. Some outbursts had probably just been the normal tantrums of toddlerhood. Some hadn’t. That led to the first real conversation between my wife and I about whether our son may be autistic. That was over seven months ago. The question still remains unanswered by anyone who could officially answer it. This is why I’ve written this post with a fake name and haven’t named my wife or son. So far, we’ve told very few people about what we believe to be the case. How can we say that our son is autistic when nobody has formally diagnosed him yet? We’ve decided that we’re not yet ready to discuss it with our own parents (for various reasons), but we’ve taken all the steps you need to take to obtain that all-important diagnosis. We live in the UK, so our healthcare comes from the National Health Service. What follows here is not meant to be a criticism of the NHS or socialized medicine, both of which I wholeheartedly support and always will. However, autism diagnoses in the UK take far too long. They just do. We’ve been on the waiting list for an appointment to make some kind of progress in this direction, and so far we’ve heard absolutely nothing. The timing is just plain awful because our son starts school in September. We’ve had to work with his playgroup and future school to prepare him and them for his arrival in the best way we know how. Without the diagnosis, he doesn’t have the option of entering the class for children with additional needs. This adds an additional level of stress for what is a scary and emotional time for any family.
So far, his school has been supportive, letting us visit and coming to see him at home and at playgroup. There’s been no sign of them “indulging the crazy parents who think their kid is autistic.” That’s where the lack of a diagnosis leaves us. We think he’s autistic and can spend our time reading all about it and how to help him based on our experience, but we don’t actually know anything. Our son doesn’t deal well with the unknown, and we’re sending him out into it very soon. Sure, we could pay for a private diagnosis, but an initial consultation costs £300. We can’t afford that much, let alone the cost of the full assessment, which can be around £800. For some families, that’s an option. For a family with two kids and only one working parent, no chance. So, on we go. We have a son who is most likely autistic and do what we can to help him cope in a world that still isn’t made for people like him. This morning, his socks were too “curly,” so he wore his fake Crocs without any socks to go to the dentist, which was too noisy.
We’re learning every day how to be his parents in a way that makes his life easier. Sometimes we mistake things he can’t control for simple naughtiness, and quite probably, we do the reverse as well. But we’re trying to do our best for him. What we really need is the clarity and support to help us know that we’re at least getting it right some of the time.
Hopefully, that will come soon. We’ll be waiting.
It takes a village!
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