A lot of parents of autistic children find they are not listened to when they first raise concerns about their child’s development. Others are in denial, and that was me. Denial is very tiring as all your energy goes into proving through the medium of everyday life that your child is not autistic. It is just as exhausting on the other side, but it feels more like an invigorating run through interesting terrain rather than an endless trudge through a desolate landscape. I feel the journey has actually only taken me to the start line (we are still waiting for diagnosis), but what better place to start?
I’ve never seen a baby so engaged with the world. Apparently this was my sister’s impression as told to my mum after seeing my son Leo at around 8 months old. My sister plus kids were on a brief visit to my parents’ house and when we arrived the kids were engaged in a puzzle-fest. I plonked Leo in the middle of it all, and to my amazement he didn’t pause for a second, but clocked what was going on and got to work with the puzzle pieces. Ok, so he was putting them in the wrong places but the point is he had worked out the game and was joining in.
People are more likely to say that an autistic child seems locked in their own world rather than engaged with it, but when I look back I can see that he was engaged with the objects rather than the people, but hey objects are part of the world too, someone has to pay attention to the objects. Someone has to watch the wheels go round and see if they can work out a way for them to go faster or better. Having said that, I also remember a baby who would love looking at you, with one of the biggest smiles I have ever seen. I used to think it must hurt his mouth to smile that hard. His eye contact was frequent and natural and his 10 month check-up was textbook.
When your child regresses it inevitably feels like something has gone wrong (or more likely that you have done something wrong as a parent). Leo’s dad has even asked if someone dropped him on his head. Indeed not, but nevertheless, the search for explanations is as irresistible as it is unhelpful . Leo’s early childhood was somewhat unsettled and as an explanation for some of his behaviour it was pretty near perfect. He was a surprise baby and we had not yet managed to sort out our living arrangements. We had to go from my cramped house to his Daddy’s cramped flat every weekend. Daddy visiting every night then leaving after dinner. Endless house-hunting. No wonder he ignored daddy or turned away and didn’t wave goodbye. I found it stressful enough, and I was 38.
My sister had also sent me a text soon after Leo was born saying amongst other things that she expected Leo would be very clever. I remember thinking I really don’t mind if he is, I just want him to be happy. I had read a lot of parenting books that eschewed strict routine, the naughty step and star charts. Co-sleeping, boundaries rather than punishments, saying yes when possible: I was revelling in motherhood this time (third) around, not worrying about milestones or whether my child was ‘advanced for his age’. As long as my son was securely attached everything else would fall into place. I had a kind of pure and joyful belief in that. You don’t need to teach them anything: Children are designed to grow and develop – just provide them with the opportunities and all will be well. I still don’t think there’s anything particularly wrong with that view, but I do wonder if it meant I was slow to notice things that were different.
As I say, I wasn’t worried about Leo being ‘clever’. I was considered a clever child and it never really did me any good. But I did think he was slower than my other children to pick up certain things. Waving was the first one I noticed. When Leo was about to hit 10 months I told his dad he will start waving soon, it is so cute when they do that. But he didn’t. 11, 12 months came and went and still nothing. It was 15 months when he finally got it – and he used it mainly for telling me that he wanted to leave a place or stop an activity. How clever I thought.
When I tell the story of Leo I tend to tell it in terms of his regression. It is far from the whole story but there is a good deal of truth in it, so it bears retelling here. He was ‘normal’ until 13 months when he had an ear infection. He had been an enthusiastic babbler, correct intonation and some ‘nearly words’: ‘car?’ ‘cat?’ ‘book?’. Now he was crying all the time and avoiding eye contact. I spent many weeks (months?) saying there is something wrong with his ears. I wasn’t being defensive, I really believed it. His sister has hearing loss and Leo’s ears were found to be stuffed with wax. It all made such sense. Congenital hearing loss, glue ear or just wax – yeah one of those! No wonder he wasn’t talking (or making any noise apart from crying). How that had stopped him clapping or why it made him scream every single time we went in the supermarket I don’t know. When we went shopping people used to come up and ask me what the matter was (in a nice way). Is he teething, does he need a nap? I used to say: he doesn’t like shopping. The concerned person would laugh and say typical boy. He started crying full volume the moment he realised we were heading towards the shop. This showed he really really didn’t like shopping. And of course that he was clever enough to realise where we are going. Which was indeed true.
When hearing tests were normal and his ears were cleared out with conscientious use of olive oil drops I was puzzled. Daddy wasn’t puzzled, he was worried. He’s very quiet said daddy. He used to chat away all the time. As the experienced mother to the first time dad I felt compelled to come up with an explanation. Children don’t develop in straight line. Sometimes they go backwards for a bit. I can’t remember how happy I was with that particular explanation.
Luckily there were other events around this time which provided me with more explanations. I had an emergency operation and was quite down afterwards.I had to stop breast feeding him due to me taking strong painkillers. No wonder he was unsettled. He also had his MMR jab (I was not worried that this had caused autism but it seemed to coincide with a pathological fear of anything vaguely medical, which made sense – the nice lady calls you into a little room and then stabs you with needles. Whenever I asked google it answered with autism, but google didn’t know about all these other factors so I didn’t take much notice. That’s not true actually; I bought a book called something like ‘Does my child have autism?’ I threw it away when I couldn’t find the page that said no he doesn’t – phew.
One of the other hardest things was how I felt my memories of Leo had been destroyed. I actually felt like someone had spat all over the moments of which I was most fond. He wasn’t showing how quirky or cool or independent he was, he was showing he was autistic. When we went to the park at 13 months he enjoyed the slide and would clap himself after sliding down. That was cute yes, but when at 14 months he suddenly wanted to spend more time collecting and examining leaves and stones than playing with the equipment I was utterly charmed and kind of proud too. He is an individual! He loves nature! He used to chuckle to himself as he walked along and I found it unspeakably gorgeous (only recently found out this is an autistic thing). When he was 18 months we went to a water park thing with a paddling pool, lots of fountains and even more children. After a quick run around he started picking up stones, sticks, leaves, bits of rubbish and putting them in the shoots of water to see if they would be carried along with the water spouts or fall to the ground. It was not long before other (much older) children noticed what he was doing and started copying him. Wow – I was proud, what a little scientist. Only later did I think oh yeah, an autistic little scientist. So what if he couldn’t point to his nose, he had more interesting things to think about. That was why when you gave him a toy he wouldn’t exactly play with it , but would turn it over and inspect it, try to take it to bits. Science, engineering, whatever. As I said, someone has to be interested in things: if everyone was socialising all the time nothing would ever get done. This was how I rationalised Leo’s behaviour when I realised it was a bit autistic –y. I have almost gone full circle now. He absolutely is quirky and cool and independent like the little scientist he is. He doesn’t follow the crowd, and good for him, that is who he is, why would I want to change that?? I would love him to learn to talk (hey I’m desperate for him to learn to talk) but I don’t want to destroy the scientist in him. And I don’t want to let that keenness to stop me enjoying the strengths he already has. Whatever, the important thing is that I have reclaimed my memories.
I think the first thing I noticed was that he didn’t copy. It is hard to say what was actually the first thing as a lot of the signs I have spotted only with the benefit of hindsight. For example, after being early to smile he was late to laugh and there was not a lot of it. Whenever he smiled his grandma would say he has a lovely laugh doesn’t he? I would smile and say yes but inside I was saying he doesn’t really laugh. I wasn’t worried (really, I wasn’t but the inaccuracy annoyed me).
Anyway, back to copying. We were at a music group for toddlers – it was noticeable how much more engaged the girls were than the boys, including Leo. He was around 17 months old, you can’t expect too much at that age can you? He copied an action to a song and seeing him do this made me realise how he didn’t do this at any other time, ever. As I was in denial mode at this point rather than seeing not copying as a sign I saw it as an explanation for his lack of speech and another example of his quirky personality. It is interesting that it is this kind of thinking that now annoys me more than anything: people who say well all kids are like that sometimes.
It all snowballed from there. There was a kind of inevitability to it and I decided to stop fighting and roll with it. I remember the moment I said out loud I think Leo is autistic. it felt like surrender rather than acceptance, but I got to work on that pretty fast. Reading and researching and turning over the issues in my mind. At first, I wanted to read what parents of autistic children had to say, autistic self- advocates did not really seem relevant. I was very very very wrong. They are at the very heart of what you need to help your child. I was puzzled by everyone going on about sensory issues as Leo did not seem to have any. I was wrong again, he has loads. I still get it wrong. I decided he was ready to try ‘Rhyme Time’ at the Children’s Centre. Last time he barricaded himself under the table and did a big poo so I should have known better. This time I knew within two minutes it was not going to work, and yet I stuck it out for half an hour until we were both in tears and Leo’s distressed wandering reached its apex. Come on Leo you love the sleeping bunnies – hop little bunnies hop hop…. I was genuinely upset at the time, but I went home and had a cup of tea and now I’m laughing about it, maybe not heartily, but still I’m laughing.
Another thing that made me cry: The first letter I received from the Child Development Centre stated that Leo made inappropriate noises almost constantly. It is true that he makes noise, and I had convinced myself this was A Good Thing as it showed intention to communicate. When I saw inappropriate noises I just crumpled. The letter showed me my son through the eyes of a professional. He wanders without purpose, he is non-compliant. The language is unfortunate and dehumanizing. That night I had a dream about going shopping with a 15 year old Leo dragging his feet and saying ‘ah ah ah’, with people staring and looking sympathetic. A wise person told me to replace inappropriate with atypical. This made everything better almost immediately, but it also made me remember this cannot be about me feeling embarrassed or disappointed. I feel like I am working things out, and I know I will be proved wrong again before too long.