All I knew about autism was from watching Rain Man. It seems I was not alone.  I typed ‘autism’ into Google Images in 2009 and posters of Rain Man were in the top 3 rows of images. Although there is no doubt that the movie increased awareness of the condition, I’m pleased to say that Dustin and Tom no longer rank so highly in the search results.

A Mother’s Intuition

My wife Gill was way ahead of me. She had spotted the signs. She had worked with children and adults with ASD and she recognised the habits. I just thought he was a bit quiet. He was our third child and frankly I was glad of the peace! I just thought he was going to be an indoorsy, bookish type. Fine by me: he would balance out the other 2 hell-raisers. But Gill kept pointing out milestones he had missed:

By the age of two a child will be able to say a range of single words and many children will be talking in short sentences. Your child will start kicking and throwing balls. As they develop new skills, encourage your child and tell them they’re doing well. You’ll see them respond by laughing and getting excited. http://www.nhs.uk/Tools/documents/birth%20to%205%20development%20timeline.htm

Sound familiar? Ehhhhhhh, no. Not so much.

A normal baby

It had all started out so well.

Nick had used several words in the first year of his life. Yes /No / Peppa Pig were favourites, but these seemed to slowly vanish at some stage between 14 and 18 months. He seemed less expressive in his facial gestures, he avoided any direct eye contact and day-by-day seemed to become increasingly withdrawn.

Gill was concerned. I was not.  I was certain that when the words came back they would do so in a flood. I had a nephew who had been a late talker and I remembered talking to my sister about him. How he seemed to go from never talking to forming full sentences in what seemed like days.

But with Nick the sentences never came.

Nick became ever more withdrawn, distant; stacking cans in the kitchen rather than playing with toys. Even when he played with toy cars, he didn’t really play with them: he turned them upside down and would spin one wheel on the car, staring intently. He would have lain there staring at that spinning wheel for hours if we had let him.  

There was no speech. There were only squeaks.  

And it seemed to be getting worse.

Worried

Any attempt to engage Nick even in baby talk or to try and cajole him into eye contact resulted in him wrestling himself away, often wide-eyed and screeching. And it seemed that he was rapidly becoming more and more withdrawn, more isolated, like he wanted to retreat into an invisible bubble and be left alone forever.  

My enjoyment of the peace and quiet of bookish kid number 3 was now long gone. My optimism about the impending arrival of the full-sentence avalanche had evaporated. It was replaced by a growing sense of panic about what was going on inside this little boy’s head and what we were supposed to do about it.

The realisation

Thank goodness for Gill. It is only really as I write this that I realise what a Godsend that my wife’s experience of working with people with learning disabilities was for our family at that time. She saw the signs early and started to do more online research long before she even hinted to me that she thought anything was amiss.  I dismissed her early hints that he might be autistic (Remember? The flood is coming), but she persisted with the notion until one day when she showed me the National Autistic Society website*. It had a checklist of 20 signs that a child may be autistic. If your kid had 2 or more symptoms, it was suggested that you might want to make an appointment with your GP or behavioural psychologist to get expert advice and diagnosis.

2 or more? I was shocked.

Nick had 18.

*the NAS website has since been updated. There are checklists for GPs but not for parents. It probably helps avoid total paranoid meltdown by parents who join up invisible dots and then panic.

Next…..Dealing with the Diagnosis: Autism