I have an eleven-year old son with Autism. He also has several other conditions: he is unable to speak or communicate in an effective manner and, although he is mobile, he has balance and co-ordination issues.

 

Over the years I have read several stories of Autism. I have read about the medical diagnosis and how it works, I have researched the genetic links and I have read any number of self-help books, however, none of these have made life for my family any easier.

A few months ago we hit a phase that was incredibly difficult to cope with and myself, my husband and my eldest son all struggled to cope. We each of us shut down and, in our own way, alienated ourselves from the others. It was the only way we were able to get through.

 

After a while it hit me that Autism (and its associated conditions) is not selfish. Whilst the diagnosis and help is focused primarily on the person afflicted with the condition, Autism directly affects everyone involved in that person's life. Not only does it dictate - to a lesser or greater extent - the quality of life that the individual will have, it also dictates the quality of life for everyone around that person.

 

My son is young, only eleven years old, and yet very soon, we will be facing an impossible decision. He is becoming more difficult to manage on a daily basis and, when the days are bad, our life as a family suffers. There are so many things that we are unable to do simply because of Autism, and it is hard not to resent the challenges it has brought into our lives. We are lucky - we get respite and carers to help - but there may come a time when we find it impossible to cope, and that is the decision to which I refer.

 

There is one memory that still tears me apart to this day, regardless of any other situations we have faced with our son, and that was his first day at school. He attends a specialist school, there was never any doubt that he would and, on his first day, he was just four years old. That is not unusual, however, the only way for him to get to school was on a bus - with passenger assistant and support - yet even so, putting him on that bus and waving him off at such a tender age was heartbreaking. I will never forget the utter desolation that I felt that day. Taking your child to school on their first day is such a special moment and yet Autism even took that from me.

 

In the future we may be facing another heartbreaking moment. A time when our respite care may need to be increased and in the long-term the possibility of residential care facilities. In this regard I cannot fault the support that we have received throughout our son's life, yet to consider residential care fills me with terror.

 

As yet I cannot imagine taking him to a residential home and leaving him behind - it literally makes me feel sick to my stomach  - yet it is another reality that we may well have to face.

 

Like I said, Autism is not selfish. It takes from those whom it directly affects and it tramples through the lives of their loved ones without the slightest care.

 

My son is a gift, he is precious and I would never, ever be without him, but living with Autism is hard. It is mentally and physically draining and it can test even the strongest of relationships.

 

Sometimes we have to remember that Autism's reach is wide and that often there are unseen others who too are scarred by this condition.

 

Autism is cruel, it is debilitating and it is definitely not selfish.

Published by AnnMarie Wyncoll