Families of Adults Affected
by Asperger's Syndrome
Case History 4
I am writing in despair and poor health in the hope that someone, somewhere will recognize that there are many people in my position, we desperately need help, and our lives are in tatters.
I use the word “life” loosely, because my quality of life is almost nil. I am the wife of a sufferer from Asperger’s Syndrome. We have been married for ten years. At that time I had a very responsible job, many friends, rude health and life was a joy.
Chronic asthma and Rheumatoid Arthritis now disable me. On two occasions I suffered a respiratory arrest and ended up on a life-support system in intensive care. On one early hours of the morning emergency he ran away from the ambulance where I lay fighting for my life. He does not hate me – he just panics under pressure. Then he would forget to visit me in hospital. On my return I found a letter from the Inland Revenue to say the Bailiffs were being sent in the following day to strip my home, because he had ignored all their letters. Of course he had, I was unconscious at the time. You try telling the Inland Revenue that a doctor did not know what to do about his tax. Well, he does not know. Anything he cannot face he throws it away, and the consequences are horrific – for me that is. He is just “out of it”.
He holds his job down by doing literally nothing – and I mean nothing – else. Behind closed doors I have to make him cleanse himself, dress appropriately and curtail his vulgarity whenever possible.
His social behavior is appalling, falls asleep in company, makes rude noises etc. Candidly I avoid friends now, due to shame, and as a result am more isolated than ever.
He leaves gas taps on unlit, the house unlocked, or locks us out. Has left his checkbook and cards in several supermarkets, once in a holiday camp we had left. Keeps copious lists of “things to do” but I have to tell him what they are. If I am not there he loses the lists.
If I am unfortunate enough to be ill in bed – he tells no one. Takes me to the toilet, gives me meager food and drink and totally ignores me. I feel like a prisoner in Beirut. I could write the script for a Hammer Horror movie. Yet the most horrific thing of all is that the medical profession has passed him around like a parcel for eighteen months. Finally, a diagnosis from a psychiatrist, thankfully confirmed by Barry Holland of the Autistic Society, and I have enclosed a copy because I want these facts to be known, whilst at the same time I live in terror because I am 59 years old, disabled, wonder what he will do next, and fear he could lose his job – if they could use his illness (of which they are totally unaware) to sack him. He is slow due to his handicap and the name of the game is ‘output”, presumably quality is now on the “back burner’ as I fail to see how one can increase without it being at the expense of the other.
What deeply upsets me is that although there is support for families of children with autism, and rightly so, what the hell happens to the women who are married to these men who “slipped through the net” and drive us to the brink with their cold, irresponsible behavior? Where do we go to save our sanity? There is no outward sign and all too often it is passed off as a joke or treated as “men behaving badly”. If only that were true. The reality is highly dangerous and damaging. There must be lots of households in this state, hiding behind closed doors, either too loyal or too afraid to “blow the whistle”.
Thank God for the Autistic Society, but, and it is a huge but, what are they, or indeed anyone for that matter doing for us? Until I spoke to Brenda I felt as though no one would ever, ever, believe me. Could she not be funded in some way to set up a support network of our own? If not, why not? Please, please help us.