Disclaimer: I am not qualified in psychology or psychiatry. I am writing this because over two years ago I started wondering if my children could be autistic. I found that my impression of autism was wrong, to the extent that over two years after I started, Youngest now has an ASD diagnosis.
So, this is a guide to the lesser known aspects of ASD. I won’t be touching on the obvious traits like obsession on routines and very narrow areas of interest. Or a love of patterns and repetition together with strange speech patterns. And while we’re on the subject, our boys are not obsessively tidy. They have patches of wanting to tidy and certain narrow areas where they like to be organised, but in general our house looks like a bomb has hit it!
And, as I said, this isn’t a professional guide. This is one parent’s observations on behaviours that I didn’t know were connected to ASD. If anything in here triggers some recognition, your first step should be a chat with your GP and checking out reputable websites, like the NAS.
My child is not a robot
This was our biggest misconception. Our children are loving and affectionate. They like hugs. They have fantastic imaginations, often creating whole worlds in their heads. They also do eye contact, although, if you watch closely then you can notice that their use of eye contact isn’t quite normal. When they are stressed, they tend to look away from you, as they do when they are concentrating. But the whole Rain Man thing where their speech is monotone, they are fixed into their routines and have weird savant abilities? Nope. None of the autistic children I know are like that.
This was a complete revelation to me. Most people with ASD have some degree of sensory problems. In technical terms, the differences lie in the way that the brain processes the input from various senses. This can be either very over or under sensitive. Often both can occur in different senses in the same individual. For example, Youngest hates firework displays, air-shows and loud concerts and shows. He copes well with ear defenders. But on the other hand, he can get grumpy because he is unaware of his body and lets himself get hungry. And he has very little sense of where his body is, so can be quite clumsy.
This leads on to another good point – think beyond the five traditional senses. The ability to know where your body is, proprioception, is a sense too. As is interoception, the sense of what’s going on inside your body. And the detection of hot and cold, balance and a host of others. Autistic children often have a reputation for swallowing odd things (because they’re seeking new sensations by putting things in their mouths).
This one was a real revelation for us. Apparently together with autism, you often get random production of melatonin, the hormone that tells you when to sleep. So when we say it’s bedtime, our children may or may not feel tired. And if they don’t, then being told to lie in bed in the dark with nothing to do bores them and leads to them thinking up many excuses to come down and talk to us. Recognising this truth changed the way we parent them and made us much more sympathetic. (And now they’ve learned to read, that helps keep them occupied!)
Development of skills is what characterises childhood. But autism can be seen to be a developmental delay condition. Lots of skills like speech, understanding, toilet training, walking and other physical skills can be delayed. But, in my observation, the delay is often uneven and off-set by advances in other areas. I know children who can take electronics apart and fix them but can’t read at the age of 7. My own children excel in some areas academically but struggle socially.
One big clue that we missed was that pretty much all of our children’s friends (and they only had a few really close ones) were younger than them. This confused us at the time, because they are bright, so we’d expect them to have older friends. But that’s intellectual, socially they are delayed so find younger friends more to their liking.
Another big topic in this area is handwriting. I don’t know the cause, but often the handwriting of autistic children is awful and a long way behind their peers. The problem here is that writing can actually hurt their hands and cause immense frustration with school work. When you consider that the main way of presenting your work in school is through hand writing, it becomes clear that handwriting problems can undermine all aspects of learning and make it hard for a teacher to truly see a child’s potential. You can either choose to have intensive handwriting support or teach them to type, but chances are they’ll need some support in this area.
This really is a follow on from development. Some autistic children are way ahead (and usually classed as Aspergers or High Functioning), others are behind, some to the extent that they have learning difficulties. And some are just about average. Or maybe they are advanced in some areas and way behind in others. It is said that if you compare ASD children to neurotypical (a shorthand for non-autistic, sometimes abbreviated to NT) then ASD children tend to have a wider spread of abilities and personalities. The one trigger that finally alerted us to go and seek professional help for our children was that they were way ahead academically, yet their behaviour was so bad I was called in to see the headteacher at least once a term.
I must point out that we love our three children dearly. But with their particular make-up they need a love that can see both their strengths and their weaknesses. That way we can help them to be the best they can be – we don’t give them a free pass on account of their special needs.
This post is already longer than I intended, so I’ll stop here. Each of these subjects could actually make a whole blog post on their own. As I said, this is only me trying to remember what it was like two years ago when I started on this journey. And hopefully I can help someone else to find some short cuts.