If autism occupies a spectrum, what is Blue's wavelength?
The word "autism" popped into our heads very early on in Blue's life. I had signed up to a baby development newsletter which appeared in my inbox from time to time. In the early weeks/months, I remember reading that my baby would be transfixed by my face and thinking "He hardly looks at me." I'm ashamed and embarrassed to say that at one point I Googled "My baby doesn't love me". Blue was two or three months old, so ascribing those kind of notions to him was ridiculous, but I was simply articulating a general anxiety I had about his development.
Blue developed an early fascination with lights and spinning things and he rolled his head a lot in bed, none of which is unusual, but combined with a lack of sociality, did worry us a little. Later, there was the abhorrence of the sound of clapping which meant baby classes were not fun for anybody (and interestingly, he didn't clap until he was eighteen months old). There were more warning signs which we only picked up in retrospect, for example some sensory issues around weaning, not responding to his name and poor sleep habits.
Play dates were often hard work, even as a tiny boy, and got increasingly so, peaking at about 2.5 years, when he would sometimes hang on to the door jamb of the front door of friends' houses in an effort not to be taken in. We also couldn't leave him with anyone - his grandmother, a creche. Separation anxiety is obviously totally normal, but his response to being left was off the charts.
Although, we had privately worried that Blue might be autistic, he also hit a lot of his milestones, especially in the first year. In fact, he was quite precocious in his gross motor skills. He rolled and sat early and he walked on the day he turned ten months, despite the fact he didn't really crawl at all (he did an endearing half shuffle for a week or two). He was an early and brilliant climber. I got used to the alarmed expressions of other parents in the playground, unnerved by seeing this tiny boy at the top of the big kids' climbing frame.
Blue was a really happy baby and young toddler. He had a great sense of humour and was easy to amuse and entertain. All in all, there was enough that was "right" to have us flip-flopping constantly over whether there was anything worth investigating.
He said his first words ("mama" and then "dada") just before he was twelve months, but language came quite slowly after that. As I've described elsewhere, it was this apparent delay, which led us to ask for a referral.
At this moment, Blue is semi-verbal. He talks less than most children his age, his language is functional in nature, although some social language is creeping in. His acquisition of speech has been quite disordered. For example, he has been speaking in simple sentences for a number of months, but only started babbling a couple of months ago. His main difficulty is that he is very difficult to understand. Only The Sensible One, his ABA tutors and I can really understand most of what he says. His speech is characterised by a preponderance of "d" sounds and a lot of word approximations. If he asks for a drink, he will say "Des (what he calls himself) dof (wants) djus (juice)."
Socially, Blue tends to isolate himself from his peers. He used to be very wary of unfamiliar adults, too, which basically meant anybody that wasn't The Sensible One or me. However, gradually he has come to accept that adults can be cool and he's usually very happy to have our friends, relatives and his austism team around. He is improving with his own age group, too. He used to actively avoid young children. If they were on the climbing frame with him, he would get off. If they came near him, he would move away or freeze up. At nursery, we are hearing more and more, that he is tolerating parallel play. His ABA tutors (about which, more later) shadow him for a couple of nursery sessions a week and they are trying to set up simple games, like tag, with Blue and the other children, with moderate success. Blue loves older children (aged about 8 upwards), especially boys, when they are kind enough to admit him to their games.
Blue still has some sensory issues, mainly around sounds, which I can't quite get to the bottom of. Some I understand - he doesn't like it when nursery gets boisterous and shouty, for example. Others are a bit mystifying. He doesn't like books that make noises and he often doesn't like particular sounds on the television. He's fine with real life fire engines, but woe betide a book that makes a nee-naw noise. I guess it must be the lack of context? He eats quite well for a child on the spectrum, but any objections to food are likely to be textural rather than taste. He is quite poor at biting, so food has to be in small pieces otherwise massive pieces go in, and then come out again(!) This is part of a general hypersensitivity in his mouth. He will wipe his mouth if he gets food on his lips and cleaning his teeth is a terrible battle .
What else? He's still such a tot, so it's hard to know for sure, but he seems quite bright. He knows all his letters and their phonics, he can count up and down from largish numbers, and he knows his colours and shapes. Of course, he has probably paid attention to these abstract concepts to the exclusion of more usual things - like people, so it may just be has had an increased opportunity to learn these things ahead of time. This is all wonderful but, as Blue's ABA consultant tells us, knowing what a hexagon is won't make him any friends. Regardless, he learns quickly when he is focussed.
Here's a funny thing. Blue is very handsome. I know all parents think their child is beautiful, but I've had people cross the street to tell me how gorgeous Blue is. When he was smaller and I used to carry him in a carrier on my front, scarcely a day went by, where I wasn't stopped on my way to the local shops to be told how lovely he is. I remember telling someone that Blue was autistic and their response was "Oh, I'm sorry. But at least he's good-looking." I can remember being quite offended by their reaction, thinking that a pretty face was hardly an adequate swap for serious developmental delays. However, now, I kind of agree. The fact of the matter is that people like attractiveness and his life will be the easier for it. Charlotte Moore (mother of two autistic boys and the wonderful book George & Sam) wrote eloquently about it here.
I understand that tantrums are very common with children on the spectrum, but Blue has always been very even-tempered. He has just started having the odd little tantrum but, so far, they have been reasonably easy to curtail. We let him get the worst of it out - he tends to be very upset, rather than angry - and then count down from a high number and offer him juice and his blanket. I wonder whether we'll be in for a bit more on the negative behaviour front. I should probably read up on how to manage them, just in case.
What does Blue like? A lot of things. He loves books, physical play, vehicles, travelling on buses and in taxis, music and singing, crisps, juice, and the big one - our iPad! His love of the iPad deserves its own post, so I'll just say he is an Apple fanboy and his love for the "daPi" (our secret code name, so he doesn't clamour for it every time we mention it) is all-consuming. It's great that he has so many interests, because they provide "ins" into his world.
Hopefully, that gives you a bit of a picture of our dear elder boy. I guess he would be classified as a beautiful, happy high-functioning autist.
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