My husband and I have been married for many years and we have three children. The youngest, a boy, now in his teens, was diagnosed with Asperger syndrome (AS) last year. Although I was already pretty sure of the expected diagnosis, my reaction, though mainly of relief, was also one of shock.
As often happens when a child is diagnosed, the mum (usually the mum, but not always) begins to understand so much more about other members of the family! It was so easy to trace the way AS ran through the family, not always as marked as with our son, but still clear once I knew what to look for ...
... so is that why he always has to do that (anything) in the same way? Was it a learned habit or a ritual for security which he couldn't manage without?
... is that why she can't eat any food of a particular colour?
... is that why none of them can be spontaneous or go with the flow, ever?
... is that why they have rules and right or wrong for everything?
And the big one ...
... how difficult must I be (in all my creative chaos) for them to live with?!
Adapting to life with a diagnosis
I went through a very difficult six months feeling as if my life's foundations had been rocked, and often wondering if it was me, rather than them, who had a problem. Should I have sought help sooner? Why was there no one to blame? Who can I yell at, now I understand that yelling at them can cause confusion and make everything worse? (Even if it makes me feel a little better...)
When I promised forever, for life, was there a get-out clause if someone's AS was causing the difficulties? (I'm pretty sure the answer is no.)"
So, ten months on, I have worked it through, for now. I have come to some conclusions and made some promises to myself.
It's important to take care of yourself
There has to be a balance between meeting their every need and acknowledging my own.
Sometimes it is right to fit in with those I love, to bend over backwards to accommodate their needs, but sometimes it is right to acknowledge that their expectations cannot be met and to deal with the consequences.
Sometimes it is right to protect and camouflage the difficulties faced by those I love, but sometimes it is right to share the whole truth, in confidence, with a close and understanding friend (I wish for everyone a friend like mine)."
Others, in a similar situation, may empathise with these conclusions and promises, and the thought processes that led me to them!
Asperger syndrome. One year after diagnosis. Some reflections.
There are a few people in my family for whom I have to make many allowances. This is not their fault. Neither is it mine.
There are a few people in my family who cannot, without extreme effort, make any allowances for me. This is not their fault. Neither is it mine.
They are the same people they were before I understood AS.
I loved them then.
I have chosen to love them now, knowing why they are as they are and having more understanding of why they think and act as they do.
I will do my best to be consistent, logical and even-tempered as this helps them, and therefore helps me too.
I will try to explain everything to each one of them without sounding patronising, and without breaking confidences.
I will try not to show the anger that I feel when they are being all that they can be.
I will consciously look for the positives.
I have acknowledged the long-term emotional strain with which I live.
I will not punish myself for being less than perfect.
I will not feel guilty when I take time out.
I have chosen this.
I will stay, not because I have to, but because
this is where I want to be.