I sometimes struggle to explain what it is that makes Leo autistic. People ask if he spins, lines up toys, flaps, tiptoe walks. Not really. He flaps his hands occasionally when happy, but he hasn’t done it for weeks. I line up toys more than he does. He doesn’t speak at all, but speech delay is common.
Even in the paediatricians office this week I found myself saying erm, no he doesn’t do that to a lot of the questions. And yet we have been told the diagnosis is pretty much a done deal. The triad of impairments (in social communicaton, social interaction and social imagination) plus sensory differences, don’t really explain what it is in terms of everyday life that is different to other toddlers. And I hate the impairments thing anyway. And I hate the way sensory differences are tagged on the end when they are so central.
So this post is basically a list of all the signs he shows that point towards autism. Some of them are things he doesn’t do any more, and for some of them I’m not even sure it is an autism thing, I just have a hunch that it’s part of the picture. For quite a few of the things on the list I had no idea they were signs, in fact I had no idea about motor planning and sensory issues in autism. On their own none of these would be enough, and often when I mention one or two examples I get the response that lots of kids do that or well, they’re all different. Well, yes, but also no. I hope this list will make that a bit clearer, to me as much as anyone else.
That also reminds me of another piece of advice I would give myself with the benefit of hindsight: Make a file for your child. I wish I had done that immediately, instead of waiting until I had accumulated an almost unmanageable amount of paper which I stuffed into a drawer. Eventually I bought a lever arch file, some subject dividers and got to work. It is actually quite beautiful now. This list is going in the file.
- No speech. That is the big one. And the fact he regressed from babbling to no babbling is even bigger. He started babbling again but has gone backwards again the last few weeks.
- He can’t nod or shake his head for yes and no. He can perform the actions with a lot of effort, but not spontaneously in response to a question. We get round this by offering choices or suggesting he point to the relevant thing.
- Eye contact, lack of. They say ‘poor’ eye contact, but I prefer to say ‘less than you would expect’. When he is relaxed his eye contact is closer to what you would expect.
- Lack of response to name. About 90% of the time. Even when it is me calling him. This can actually be dangerous when you want to warn him of something.
- Low levels of joint attention. He never used to want to share experiences. This is probably his biggest area of improvement.
- No social smile. He will smile at me, but not in response to my smile.
- He learnt to walk over a very long period of time. In one week he walked 1 step, the 2, then 9. Then nothing for 6 weeks. It was stop/start for around 3 months.
- He couldn’t tip his drinking cup until he was nearly two.
- He couldn’t touch his nose when you asked where’s your nose? he would usually end up poking his finger in his eye. When he finally got it after his second birthday he walked round with his finger on his nose for nearly the whole day.
- He used to shake his head from side to side in his highchair ( also when seated on shoulders, so gravitational insecurity?)
- Only started waving goodbye at 15 months, Would often use it to tell people he wanted them to leave, or to tell me he wanted to finish an activity.
- High distress at quite ordinary things like visitors or visiting or going to a cafe. Medical appointments became almost impossible. Now he is more likely to hint it is time to leave by presenting a visitor with her bag and guiding her politely to the door.
- Distress at having feet measured and hair washed and cut. We are talking full blown panic rather than whiney and difficult.
- Frequent meltdowns that seem to be fear-based. He looks scared and confused.
- Wandering around with no apparent purpose. I think the purpose is to soothe himself when he is feeling agitated. It often comes just before a meltdown.
- Laughing to himself, chuckling away as if he just remembered someting funny. Perhaps something that happened earlier that he was not able to process at the time (my own theory). I imagine it as a little film playing in his head.
- Fascination with circles and numbers. Not so long ago either would stop him in his tracks and he would have to trace it slowly with his finger. He likes letters too now.
- Ignores other children – until they are in his way. Then he pushes them, but with no malice whatsoever. That sounds weird – you have to be there to see what I mean.
- He can’t blow. Didn’t blow raspberries as a baby.
- He can’t spit either, so swallows a lot of toothpaste.
- He can roar, so when he attempts to do either of the above it comes out as a roar.
- He makes noise almost constantly, but if you ask him to make a noise deliberately (to scream at the crocodile in row your boat for example), he can’t do it. Unless it’s roaring, he can do that.
- Sometimes he needs help to remember what to do. We go to the park and he will go down the slide once then try to leave. When I say and sign again? he seems to remember and has another go, then realises he does want to stay and play. I think this is a motor planning issue.
- Sometimes he does not want to play with play equipment at all but prefers running up and down hills and picking up leaves and stones. Fine by me.
- Strangely for an autistic child he seeks, he gets bored of the same toys, games and places quite quickly. I get the impression that is unusual anyway.
- Again, a bit strangely, he copes well with big changes. We moved house and he barely blinked, but little changes can be difficult. If I try to go to the park and then the shop he panics. It is always shop then park.
- Impatience. This is a massive thing at the moment. The tiniest bit of waiting sends him into utter despair. EVen as I am unwrapping the lolly in front of him he is in despair about having to wait. Waiting for a miniature train ride last weekend caused mayhem. My theory is that he cannot process two contradictory positions at the same time. He is told that we are going on the little train. And yet we are not on the little train, we are just standing there. He is told he can have a lolly and yet I appear to be holding onto it. Aaaargh, what’s happening mum, help me???
- Shopping is much improved but still causes distress. He will tolerate one shop per outing, so I have to choose wisely.
- He grinds his teeth.
- He pushes against things with his feet.
- He digs his fingers into things (people sometimes).
- He uses way too much pressure when drawing. I have yet to meet a crayon that can survive.
- He likes to lie on his side to play.
- He likes his feet to be uncovered when he goes to sleep.
- He squashes into small spaces. Between bed and wall is a favourite.
- He hangs upside down off things.
- He purposely falls off things.
- He likes strong hugs. It can get quite fierce at times.
- He squeezes his eyes tight shut at unexpected times. Is the light too bright? Not sure. He often smiles when he does it.
- He likes to walk around with his eyes shut or head covered.
- He doesn’t seem to feel pain in the way you would expect. He can fall into nettles and just look slightly surprised then carry on.
- He loves to run. Away mostly. There doesn’t seem to be a reason, he just likes to run.
- He is always trying to get out of wherever he is. As soon as we arrive anywhere he is looking for the exit.
- He is a very fussy eater. Very very. When the dietician suggested blending vegetables to hide in a pasta sauce, I not only said sauce? you must be kidding… but also, pasta, you must be kidding? Way too exotic for Leo. I was overjoyed last week when he touched a blueberry.
- He reacts negatively to praise. If you praise him he tends to stop doing the activity and become a bit agitated. The over-enthusiastic approach beloved of Speech Therapists has a similar effect.
So that’s my Leo, although of course there is much more to him than that, but it has helped me to make the list. I don’t see all these things as problems to be solved, although some of them undoubtedly cause problems in everyday life. I see them mainly as clues to help me connect with him, to understand what is beneath it all, fanciful as that may sound.