I sometimes wonder if doctors, therapists, psychologists, etc., are given a crystal ball when they graduate from school. How else could they make such sure and dire predictions about the future of our children? I have been told that Boo would never make eye contact, speak, interact, be able to follow simple directions, and so forth and so on. Hmm, some thirteen years later he has proved most of these horrible prophecies wrong. Maybe these “well meaning professionals” confused their crystal balls with magic eight-balls. I don’t know, but I have an important message for parents out there who just had their child diagnosed as being on the spectrum: the future is not yet written. No one, and I repeat, no one, can tell you what your child’s life is going to be like after spending 30 minutes with him when he was three years old. Children on the spectrum live and grow at their own pace. Sometimes intensive therapy is needed, sometimes we need to back off and give them time to be kids. For some reason, when Boo was little, professionals were all hung up on the notion that all sorts of things had to happen before he turned five years old, or they would not happen at all. Primarily I was told if he did not speak by age five, he would never utter a word. Since they were the “professionals” I took their word as gospel. Obviously, this puts unspeakable pressure on the parent if the child does not reach the hoped for milestone because the parent feels as if she has somehow failed her child. I have one word for this theory: hogwash. No one can put a timeline on language. Yes, the brain is more plastic before age five, but that does not mean that amazing things can’t happen later in life.
In the last two months I have noticed two developmental changes in Boo. First of all, he can now follow a point, which shows joint attention. For years I would point at things, hoping to draw them to his attention. He would either stare at my hand or gaze blankly into space. That changed this summer. We go on lots of walks together and I always chat about what we see and point at things that I think are of interest. I suddenly became aware that he was looking at whatever it was that I was pointing at. Also, if I tell him to get something for me, e.g., his shoes, and I point at them, he will retrieve them on a fairly regular basis. Now, joint attention is something one should see in toddlers, and lack of it is a red flag for autism. I was specifically told that Boo would never have joint attention. Interesting, but I don’t think he got that particular memo. The other development change I have noticed is in toileting. He stays reliably clean and dry during the day and some nights, as long as I take him potty every few hours. Recently, I have started asking him if he has to go. He will pause in whatever it is that he is doing and seems to think about it. If he does have to go he will trot off to the bathroom and take care of business. If he does not need to go he will resume doing whatever it was that he was doing previously. This makes me wonder about body awareness. Like his mom, Boo has a high threshold for noticing pain, hunger and cold. I wonder if it is this way for using the bathroom, too. I wonder if the need to go just does not really register until someone points it out to him. Occasionally, he will take himself to the bathroom, but mostly he relies on my reminders. It makes me wonder how aware he is of his bodily needs.
Anyway, I use these two examples to show that the future has not yet been written. The dire predictions of thirteen years ago have not come to pass. Though he will always need help, Boo has proved to me time and again that he can do many things, and is capable of learning and doing a lot more. You will encounter many “professionals” in your journey with your child. Some of them will be wonderful and some of them should never have graduated from medical school. They will all have opinions on what your child can do and what your child’s life will look like down the road. You are free to hold on to their opinions or to leave them; or if you are feeling really snarky, smile sweetly and ask to see the crystal ball that they received with their medical diploma.
Harriet's Hedgehogs and Autism Advocacy 