Families of Adults Affected by Asperger's Syndrome

I have always known there was a problem and I think he also knows. I believe he wants to be content, have a happy family life, friendships etc. But I know it has always eluded him. He has tried hard, particularly in latter years, because he has had so many disappointments; misunderstandings and has struggled to be “one of the crowd” but is always a step apart. He is now conscious of his difficulty with communication and will often over compensates, causing embarrassment and this has the opposite effect to the one he intends. During our early years together life was almost intolerable, he did not even try then, and he constantly walked away from me as I pleaded for conversation; understanding and normal family life.

I have known R for 35 years, married to him for 29. We had a funny courtship, on one minute, off the next. Long periods where he would not contact me and then he would turn up as if nothing had happened. I suppose I found this aloof, hard to get manner attractive and he was quite sweet in a shy gentle way and fearfully good looking. In the sixties it was all rather “cool”. I also found his intelligence attractive and interest in the world at large and important issues admirable. His integrity and honesty are without fault.

After marriage the slow realization struck that I had married a very emotionally self-sufficient workaholic who left me on my own for long periods of time. We had moved to a new area, miles away from our home with no friends or support network. He could not understand why I needed his company, his approval (I was a young inexperienced homemaker) or support: he only became impatient with my pleas for companionship and he more and more shut himself off from me.

As the children arrived he gave no emotional support although he loved the children and would help whenever he was at home. But he was almost never at home and it seemed that he would rather be anywhere but at home. He could always think of things to be done elsewhere and would always go to the pub on Friday evenings and leave me alone at home. He worked on Saturdays and always seemed to be in a bad mood on Sundays. If we ever went out as a couple he would be silent and difficult. He considers our marriage has been a struggle!

Those were the worst times and it has got better. Over the years I have been able to make him realize that I do exist as a person and I do have needs, although he finds it difficult to meet them. I have become braver in my demands and I do believe he likes my approval. Sometimes he seems distressed when he has caused me heartbreak and says sorry but other times he clams up and deals with it by silence. We have suffered all sorts of set backs, job losses, family difficulties, in fact one trauma after another – quite often these problems have resulted from communication difficulties and misunderstandings. But he has learned from these experiences and has modified his behavior and we now enjoy a reasonably settled life and have a small circle of good friends. We have had counseling from Relate, family counseling and R has been treated by a psychologist. He has had various blood tests and a brain scan. He has had several “breakdowns” and has been treated for depression. But no diagnosis.

However, I still feel lonely and needy, and just wish we could have a close loving relationship. He does try to be kind but these efforts are stilted and forced – there is never an easy moment.

The main problems I experience on a day to day basis are as follows:

Silence

A need for easy everyday conversation is alien to him. Silence reigns except when something needs to be said. He does not want to share his thoughts or mine.

Interest in Others

He has no real interest in me, his children, his larger family or friends. He might ask people how they are but he is not really interested and seems to forget anything said to him immediately. He cannot share joys or sadness.

Intimacy and Companionship

He has no need for or perception of intimacy. Has no need for physical contact and almost never uses my name. He never says “goodnight”. He never enquires after my health, which is poor. A Relate counselor once observed that we had no intimacy – how right she was! We share very little in the way of interests but we have started to go for walks together and to go to the cinema; it is the nearest we get to intimacy. He never sits in the same room as me.

Friendships and Social Contact

He has been unable to sustain friendships. Most of the good friends we do have are primarily mine or are shared with me. He is very bad in company, appears withdrawn, especially with new people and often gives the impression of rudeness. On the other hand he can be embarrassing, can go over the top, be oblivious of causing offence by being over friendly and finds it difficult to draw the line. He will frequently and abruptly change the subject of a conversation, as if bored or not interested in what is being said. He will do things for people, with the best of intentions, without telling them or seeking their approval first. He smiles too much and at inappropriate times. He stares and uses few facial expressions.

Work

He is very successful and draws satisfaction from it; but works at it constantly at his place of work and at home (he has an office at home). He will shut himself away in his office for hours at a time and will spend hours sitting in front of the PC. I often offer to do typing for him as I am a trained secretary, mainly to be of help but also so we can be together. These offers are almost always rejected. He finds it impossible to relax and I suspect that a lot of the time he is “busy doing nothing”. He is hopeless at prioritizing, time management and time keeping. He is oblivious of the fact that this can be infuriating for others. He leaves everything to the last minute.

He finds it difficult to delegate and this can leave colleagues feeling inadequate and shut out. Colleagues have frequently appealed to me to gain understanding of his poor communication skills and exacting standards he expects from all those around him.

At Home

He is a disaster area with DIY. We live in a big old house and repairs are constantly needed. He seems not to notice the wood rot or the leaking roof and the simplest jobs are only accomplished after constant nagging, imminent disaster or I call in someone to do it for us. He will put off things that need to done e.g.: clearing out his dead father’s workshop (his father died in 1990). If a job is started it will never be finished! He is constantly loosing things, mislaying things and is forgetful. He will quite often forget to tell me something really important and this can lead to all sorts of problems as you can well imagine.

Communication and Understanding

He finds it very difficult to communicate at every level. He will often walk out of the room during conversations and goes off without saying where he is going and for considerable periods of time. He suffers misunderstandings on a daily basis and does not seem to listen or hear what is said to him. He will “get the wrong end of the stick” and put his own judgements on situations. He finds it difficult to admit that he could be wrong. His sense of direction is poor, perception of distance non-existent and confuses place names and locations. (Our walks often turn into “route marches” as he insists on map reading: other members of the family avoid these outings like the plague! I am too kind!) He does not enjoy using the phone and will keep using the callers name as though he is going to forget it. He has a bad memory for names and will call people by the wrong name to their face.

Family

He has a strange way of interacting with his family. He was virtually absent from our two older children’s young lives but has been better with the third. He has tried to make up for the neglect but I sense it is too late and they often will take advantage of his good nature. Our eldest daughter became anorexic and therapy revealed a deep-seated disturbance relating to her father and my relationship with her father. His contact with his sisters is sporadic and he will over compensate for his inattention. He will invite his mother to our house and then go off and leave her with me!

Crises

He is unable to deal with crises; e.g.: Dumped me on the doorstep of the Maternity Hospital when I was in labor with our first child; went off for the weekend when my father was quite obviously about to die (and he did); could not deal with or help with the arrangements after my father’s, mother’s and his father’s death (I got quite good at arranging funerals etc.); did not react or turn up when our son had a life threatening accident. He does not seem to notice that these things could be stressful or upsetting for me. He seems unaware of danger or potentially dangerous situations.

Lists and Numbers

He makes lists constantly for both himself and me. But he can remember number sequences sometimes from years-back e.g.: car registrations and phone numbers.

Most of the time I can cope but I think the long years of stress have taken their toll. I contracted asthma early in our marriage and the early symptoms of Systemic Sclerosis followed. These symptoms have progressed and the prognosis is not good. This is an auto-immune disease, which attacks the vital organs, circulatory system, digestive system and skin, hardening them and destroying their function. It causes fatigue and intolerance of cold to danger levels. I do need emotional support and empathy: I get little.

I am not sure what life has in store or what I can do to make improvements. I feel I have made every effort to make my marriage work, create meaningful relationships and a happy, rewarding family life. I know I have failed, but now I know R is probably suffering from AS I no longer feel to blame. For many years I thought it was my fault, that I was the one with the problem. He convinced me that I was unreasonable and demanding taking the view that all marriages were hard work. And so they are; but not that hard!

I am lucky because I am an optimist and I always hope that there is good to come and now that I have this insight and understanding of his condition I am sure I shall cope with renewed vigor. I do still love him.