I must emphasise that my son was not just diagnosed by Dr Google. Other doctors were also involved, at a slightly later stage.
The sad thing is that until I had discovered the ‘a’ word myself, no doctor/nurse/vaguely medicine related person had even mentioned it to me. But once I mentioned it myself, they were all over it. Don’t you love experts?
Every single person around me has been telling me that there was nothing wrong with Michael, and every kid develops at his own time. I still wince every time I hear that anywhere because the single biggest regret of any autism parent is how long it took to diagnose their child. Why does it take long? Because we’re told ‘everything is fine’ and ‘don’t worry’ by everyone around us. You know what, maybe it is fine. Maybe he will talk at four and then he won’t stop. But going to a developmental paediatrician just to make sure won’t make anything worse (except your credit card balance) and will only take a couple of hours out of your life. Even going to a speech therapist to get your kid up to speed can make such a difference – surely if you can get them to talk a bit earlier or a bit clearer, that will help improve their quality of life and is worth it?
The problems with Michael were not limited to speech. He barely babbled, and his favourite sound was ‘aaaaa’ which he repeated over and over, especially when his pram was moving. He didn’t seem to make sounds to communicate, just for its own sake and he never continued a song, or imitated a sound, or joined in. There just seemed to be something fundamental missing – what he was doing was so far below ‘talking’ that they seemed to be different universes.
Then we went to a paediatrician who specialized in autism and developmental delay. He saw Michael for about an hour and a half and said (in a completely ordinary tone usually reserved for talking about the weather) that he was confident in diagnosing Michael with moderate to severe autism.
Now, in most books, and with most normal parents, this news is horrible. It shocks, it horrifies, and parents go into the car crying and come out six months later. Yet my husband and I are so far removed from normal that it actually made us happy. Let me explain why a diagnosis is a good thing:
You Finally Know For Sure
The worst thing about having a child with many signs of autism but no diagnosis is the not knowing. Are you right? Are you reading too much into things? Is your aunty that raised six kids and twenty five grandkids right and there is not a thing wrong with him? After all her little Simon didn’t talk until he was two and a half and he’s a professor now.
You Can Start on the Early Intervention
Until you get that diagnosis you have no idea what to do. Should you leave it alone? Should you insert yourself into her games? Should you practise talking? Now, you can go out and conquer. You can start trying to solve the puzzle. Of course the difficulty level involved in choosing an early intervention is roughly on a par with solving the meaning of life and discovering precisely when the universe began but at least you can START!
Money is Great!!!
One of the most important reasons to get a diagnosis is the funding that is available to help with the early intervention. Don’t get me wrong, the funding available is a small drop in a very large ocean of costs that suddenly appear out of nowhere. The therapists, the toys, the flash cards, the supervisor, the books, the list goes on. It also depends on where you live and, in line with the extremely logical way that governments tend to function, it depends on which particular suburb and which State you live in.
You Can Finally Rest
Haha just kidding. You don’t actually get to rest, of course, for the next twenty to twenty-five years of your life, but you knew that when you had a baby. But you do get a lot of support. All these nice people appear out of nowhere and try to help you! It’s amazing. There’s therapists, social workers, doctors, concerned friends. Some of them do it for free! If you want your faith in human nature to be rekindled have a child on the spectrum.
Everyone in your life is really nice to you, for at least a few weeks. And if they aren’t, you suddenly don’t care.
When you realize your child, whom you love more than all the other people alive in the world today put together, is on the spectrum, everything else fades. Whatever problems you may have had with your mother/mother-in-law/work colleague/that-really-irritating-guy-from-the-coffee-shop-who-always-knows-your-order-like-you-are-totally-predictable, all of those problems just go. It suddenly doesn’t matter if that guy at work is going to become manager ahead of you even though you are about five thousand times better at your job.
You can ignore all the advice you’ve been getting on ‘just needing to take him/her out more’
Since I am part of a lovely extended family, I have been getting lovely and extended advice on how to raise my child. Whenever I see a woman aged over 40 who has had more than two children (it seems to be a cutoff for ‘knowing all there is to know about child-rearing, if you have two or less you apparently remain slightly hesitant on the subject) I prepare myself.
Now, I need to make something clear – there is a difference between sharing experience, and what I call ‘water-dripping-on-a-stone advice’. Sharing experience is wonderful. I love to know what my mother-in-law/cousin/aunty etc did with their kids and what worked. Odds are, it won’t work with my child, because nothing ever seems to, but I do usually try it or consider it. One of the best things about having a great extended family is the wealth of experience you have to lean on. But the other type…it just drives me insane! It’s where someone insists, over and over, every time you see them, that you are doing everything wrong and you should just (give them camel’s milk/take them to the zoo/take them to playgroup more). When someone pre-diagnosis told me all I needed to do was take my son out to playgroup more often and it will all clear up, I listened politely. I did not punch them in the face. However much I might have wanted to. But I did die a little inside every time my polite explanations of why this has not worked for me yet was completely ignored and the person ploughed on with their advice.
I knew that the person (and there were many of them) meant well. I knew that they thought they could fix it all for me. I know that taking him out to the park more on Sundays would feature, and playgroup, and just taking it easy when he cries. I know that they thought I was exaggerating when I talked about how stressed I was and how difficult every day with Michael was. I know they thought this was just because I was a first-time parent, and that they were positive they would do a much better job if I would just leave him with them for a few days. The good thing about a diagnosis is that these people mostly either apologised or stayed quiet for a while, sometimes both at once. It was glorious.
You can be free to treat your child differently
I remember reading an article written by a mum about how she didn’t want her son diagnosed at an early age because she didn’t want a label that would cause people to treat him differently. Of course at this stage her son was at school, hadn’t received any early intervention, was not handling it well, and she was now criticising the teachers for, I guess, not treating him differently. I have read some moronic things in my life but this was one of the worst. Of course your child should be treated differently if they are on the spectrum. And they should be treated differently if they are not on the spectrum. All children should be treated differently. If I say that my child hates going outside and is currently terrified of clouds, then stop pressuring me to take my child outside and making him look at clouds. We can do that gradually later. If your child has a diagnosis, you are now allowed to take the extra care of them you have probably been taking anyway, without feeling guilty. Or not, if that is what you prefer. People may actually (shock horror) start to defer to your judgment.
So when you are sobbing into your pillow, just reflect on these things, and maybe uncurl from the foetal position a little bit.