At 3 ½ I can remember having to leave toddler groups early when my son would start a trend in behaviour. The children would be happily playing, then someone would notice Ben playing under the stacks of spare chairs and thinking it looked fun. A trail of other 3 year olds and little baby brothers and sisters would climb under the chairs too. You can imagine, not a safe place for the entire gang of kids to hang out and certainly from Ben’s point of view – too many people! He would let rip with his now familiar high pitched shriek and start chaos! It would be worse if a child tried to share the toy Ben was playing with, he would pull it away from the other child until it ended in tears.

Crying children ran to mums, mums gave me the hard stare, I would grab Ben, coats and bag, make a few hasty apologies and leave! I think I tried a few different groups, but when you arrive and the room goes quiet, or you hear the remainder of a comment like – that’s that boy! It becomes clear that although the sign says, everyone welcome, you realise, autism is not!

So at 3 ½ feeling my sons development was definitely not following a “normal” pattern, we went to a health visitor who did a hearing test and then referred us to another health visitor, who referred us to a GP who referred us to a speech therapist who referred us to a paediatrician who gave us a social worker. I began to get used to watching my son fail the assessments, not understand what was expected of him and watch him get very upset by it all. Months of long meetings, giving the same information each time, assessments and stress followed and then I heard the words.

“Your son has autism. There is no cure; he won’t grow out of it. He might be able to go to a special school where they might be able to teach him to speak, but he won’t fit in”.

So, I read as much as I could about autism and watched Rainman again and braced myself to tell family and friends – the few I had left. Even close family have taken a few years to cope with the diagnosis and they have changed their opinions gradually. At first one sister said, do you think it was your divorce which caused it? He’ll grow out of it wont he?

One friend asked, “will you put him in a home? How will you cope”?

There was much denial, embarrassment, and few invitations. We might cause a scene? Show the family up? Have a tantrum at the wrong moment?

I am glad to say, that we have survived it all and now, I wouldn’t change my son for a moment. I have to admit to you that I haven’t always felt like that. In the early days after diagnosis I sometimes wished there was a switch which could be flicked in his brain which would change it all. I went through a kind of bereavement process for the son I thought I had and gradually began to get to know the son who I am blessed with.

I even wished his disability was more physical so he could be included and accepted a bit more. I am glad to say that in 15 years a lot has changed and now people with autism are much more understood.

So all that was before the official label, and before there was so much publicity about autism, have things changed? The circumstances have changed, but the problem is still there. We still have the child who is different and who can show that “inappropriate or challenging behaviour” you never know when it is about to happen!

Diagnosis for me was also not a straightforward process. In an attempt to understand my son better, I read all I could on autism and watched countless documentaries and films about it. It was while reading Luke Jackson’s book “Freaks, Geeks and Aspergers syndrome” that I started to feel that I was really reading about my own child hood. I could identify with most of what he wrote, the misunderstandings, difficulties decoding social situations and expectations, constantly feeling different and odd. All my life I have been desperately trying to find answers. Why do I constantly feel out of place socially, and why I have such difficulty making friends and maintaining relationships. I read more books, researched what I could on the internet about adult diagnosis of aspergers syndrome, and I realised I was not the only person who as an adult had AS which was not diagnosed in childhood.