Challenges and joys of raising a child with autism

I HAVE the privilege of having two wonderful boys. My eldest is aged 24 and was diagnosed with Asperger’s syndrome when he was five.

I was only 24 myself and had never heard of Asperger's. In fact, no one in my family had either. When I look back, this had good and bad consequences on dealing with what was to come. A life with a son who had Asperger's.

I wouldn't be where I am today if it wasn't for my supportive family and friends. They have been tremendous. From making me laugh to lending a hand in caring for my children and myself. It is still a roller-coaster journey to this day, and I doubt things will change.

I want to share some of my special moments so that others have an insight to how families cope. Yes cope. It takes time and sometimes gin – but you cope. Although it is my son who was diagnosed, it is the family who have autism too. As a unit, it affects all of us who play a part in his life. This can be from fleeting feelings one has inside, which range from guilt to humour, or it can be a direct impact on life choices. My family and I have had many and so will have many readers.

Nineteen years on from the initial diagnosis, autism is forever changing in how it is accepted and perceived by professionals and members of the public. I like to think of it as an added extra in my son’s life and others who may have it. I can honestly say that up until my son was 13 you would often find me in a corner, rocking slightly from the gin. Look, this is the reality. We all need to find a coping strategy and this was mine for a while. Don't get me wrong…I quite liked gin anyway!

From the moment I was given the "news" and a bunch of leaflets inhumanely trying to explain what Asperger's was, I became dumbfounded. Yes, I had these leaflets but very little support from professionals. This was mainly because they were too short-staffed in the Durham County Council child psychology team and also because their support, in my experience, was narrow-minded.

I was sick and tired of reading about routine. Life is not routine. Well mine isn't and I have been around enough families to state that not many people have life down to a routine, especially when you have children.

My son is 24 now and has worked since he left school at 16. This has not been plain-sailing because society (I would say) is still about 30 years off accepting those with the slightest disability. I don't blame anyone as such for this, it’s just life. I also disregard people as being ignorant to this condition as I myself had no reason to wonder what autism was prior to my son’s diagnosis. That's just how it was and still is.

Most employers are not set up to deal with my son's needs. This is not a negative in the face of all employers – just reality. As one employer told us: "We just don't have the time and patience to deal with your son's needs." Fair enough – I knew what they meant. You need a lot of patience and stamina to deal with the smallest of things never mind a "real" job. He has been lucky enough to find employment where he is accepted and making a contribution. He is a "normal" employee, if there is such a thing.

We have never labelled him and introduced him as having Asperger's. Why should we? Everyone is different. The labelling scenario is one of my bugbears. Outside our family circle, no-one knows about his Asperger's. When I look back, I think it was my way of experimenting with society. Yes, after being in his company, you may think….hmmm he is a bit different. But why label him?

I can certainly say this has had its negative and positives. One that comes to mind is when he became 17 and started to learn to drive. After the first lesson the instructor explained that two hours was maybe too long and eventually filtered it down to hour-long lessons. To be fair, I had a little chuckle, thinking I wouldn't like to be in a car with him for that long either! There were two more hour-long lessons before the instructor came to see me again. His advice was to make contact again after my son had passed the theory test due to an "incident" whilst driving. My son had used both hands to scratch his head whilst driving! I could picture the scene instantly. In fact, we call this action "Laurelling" – a term my sister came up with when my son became stressed or frustrated, placed both hands on his head and started "scratting" his hair. It's funny to see but not when he's in charge of a vehicle. I explained to the instructor but he called it very dangerous. Well, that put end to his learning to drive for a few years but, last year, he passed his test – and no one knew he had any kind of syndrome. I'm so very proud of him.

Everyday, there is a mini or not so mini dilemma, but we get through it, like so many others. Life is strange but good – and that's what we need to remember.