Families of Adults Affected
by Asperger's Syndrome
Case History 1
I thought that I could write a book about what it was like living with a husband who has Asperger’s Syndrome, although you don’t know at the time that is what it is. It is like a dripping tap that eventually erodes enamel, the grinding down of your self-esteem, self- confidence, morale, sense of humor, even sanity – it becomes like living in a nightmare from which you never wake up, you wonder if you are going mad or if you are the only sane one in a mad world. The toll on your health can manifest as physical illness or depression or both. I have pages and pages of scribblings and notes, it is supposed to be helpful to write your feelings down. I certainly would have enough material to write a book, but everybody who is in the same situation could write a book, so I will try to restrict myself to the things which caused me to think that there was something incomprehensible the matter, that it was something to do with perception, cognition and comprehension, and the things which would be most helpful for somebody in the same situation to know about.
Behavior that baffles, bewilders and confuses you, and is sometimes bizarre. Continual misunderstandings and misinterpretations that cause confusion, chaos, havoc anxiety and anger. Why did he do that? Why did he say that? Why didn’t he do that? Why didn’t he say that? Behavior that contradicts what he said or did before, or thinks other people should or should not do.
One of the most baffling things was the lack of perception about other people’s intentions, or why somebody would or would not want to do something. All the unwritten rules of behavior were puzzling to him. Concepts about what is considered “normal” were puzzling. Something, which you think is obvious, is not to him. Something, which you think is self-explanatory, is not to him. Apparent gross selfishness and self-centered behavior, he would often get his own way because he did not recognize the needs of others. He will not listen to explanations, he just wants “the bottom line”.
You talk about something or mention something and you think he is going to do something that he doesn’t do, he expresses surprise that you are cross he hasn’t done it. You do something and he says he didn’t know you were going to do it, but you had told him. He cannot “discuss” things in the sense of talking “about” something, weighing up the pros and cons, looking at it from several different angles to decide on the best course of action, looking at the consequences or knock-on effect, he just agrees with the first thing you say.
You talk about something using the same words, but it turns out he has a different understanding of the meaning of some words to what your understanding is. You argue for 20 minutes bafflingly and it turns out when you eventually manage to analyze what it is he is saying that he agrees with you.
Why does he do things that appear to be stupid? Is he stupid? How can he be stupid when he can do things he wouldn’t be able to do if he was stupid? A lot of misunderstandings about meeting in a certain place or at a certain time. Whenever he does not do what you thought he was going to do and ask for an explanation, his explanation baffles you even more and raises a dozen more questions.
He cannot work out bus or train timetables based on a 24-hour clock or work the central heating time clock. He cannot play chopsticks on the piano even when he is shown very slowly and shown it is just repeating the same thing.
Whenever he does something like DIY it is as though it is the first time he has done it. He does not seem to learn from his experiences or have a memory bank of past experiences. He looks at a job that needs doing and says, oh it’s just this and that. After he has started he gets into all kinds of difficulties and mess but insists on carrying on even when things are obviously getting worse and worse.
He insists on doing things that you would much rather he did not do but leave to somebody who knows. It is not a disgrace if you don’t know how to do plumbing or carpentry or electrics, they are jobs people spend years learning. I grew to panic if I saw him with a screwdriver or oil can in his hand.
He once dis-functioned every electrical appliance in the house by plugging them into a socket that blew the fuse, and would not be told that it must be something the matter with the socket. He once cut through the wire of an alarm bell in a shop and the alarm set off and it took me half an hour to find an electrician to come and stop it.
If he was fitting carpets, the carpet which had originally been bigger than the room so it could be fitted in one piece ended up like a jigsaw puzzle with little pieces all round the corners and central heating pipes fitting in which came up in-the Hoover. It was like being married to a cross between Peter Pan and Frank Spencer.
The first time I left him with our new baby aged 3 weeks, I put the sleeping baby into his arms in the car whilst I went to find somebody. I was away 15 minutes and when I got back the baby was screaming and he was holding him in exactly the same position as when I had left him and was cross because ladies had been looking in the window of the car to see what was the matter. I had to put our babies into his arms or he would never have picked them up and cuddled them.
It was as if to him the interest he had in our children was like my interest in a neighbor’s children would be. He never showed tenderness, if they fell over it was “Oh, get up you re all right.” In a domestic crisis he was hopeless and helpless. He had some holiday owing when I was 7 months pregnant with our second child. I wanted to go somewhere not too far away from our home in the northwest of England. We went to the Isle of Wight! He had not realized you had to book a ferry place and we had a 5-hour wait in the queue. When our turn came to drive onto the ship he was missing in the toilets. We had no accommodation booked, (Oh, we’ll get something when we arrive) and he said he felt like Joseph going round the hotels trying to find us a room late in the evening.
The first time we moved house, we hired a van and his father and brother helped us to move. I reminded him several times about the garage needing emptying. When they had finished and taken the van back I realized that the items from the garage were missing. “Oh, there wasn’t time, just leave them, it doesn’t matter.” He refused to go back (only a mile away) to collect the things from the garage.
He had a week off work to help us get settled in, but behaved as though he was on holiday. He could not see what needed to be done and when the central heating didn’t work etc refused to go to see the Site Engineer to complain. I thought the hot water tank was going to explode in the night, the thermostat had not been fitted, and he just lay there while I sprang out of bed to see what was the matter and turn on the hot water to relieve the banging and turn off the immersion.
Once when we had a shop I heard breaking glass in the middle of the night and woke him up. “Oh, it’s probably just a milk bottle”, he said. I went down and the shop window was broken, we had to phone up the emergency glass fitters.
His watch broke and he borrowed mine. He left it in the pocket of his work overalls that get sent to the laundry, and then laughed when he released what had happened. He did not apologize or replace my watch or realize that I missed it. Indeed I wondered if he had a conscience, he never seemed to feel remorse, express regret, kick himself or wish he had done something differently. He said it was no use crying over spilt milk. He did not seem to be able to project his mind into a hypothetical situation to work out what you would do then, or put himself in somebody else’s shoes to see what it would feel like.
He does not seem to “miss” people or feel a sense of loss or yearning, but if you asked him if he was close to his family he would say yes. When his father died he made jokes at the funeral because everybody was too solemn. After the King’s Cross fire and Zeebrugger ferry disasters he said there would be more jobs available for more people. When we were watching the news he would make comments which not only showed a lack of sympathy or empathy but also showed he had missed the meaning of what was being said.
When our son was six and broke his arm at school in the morning, I spent all day at the hospital with him and our daughter aged 3. I phoned my husband’s works to tell him what had happened and he came to the hospital when he had finished work in the late afternoon. When our son was 14 he broke his leg and for months was encased in plaster from toe to hip. I helped him into the bath daily and propped his leg up so it wouldn’t get wet and used the shower attachment to help him to bathe. When I suggested to my husband that it would be a good thing if he could help to do this he refused.
I always had to organize everything, plan everything, suggest what he should do to help, deal with all the business side, mortgage, insurance etc etc. He did not seem to have any initiative. If I asked him to take over a job because I had so much to do, it turned out wrong.
If we went out in the evening and he was in the company of his family and their friends, people he had known a long time, he was like a person in an audition for “The Comedians”, laughing, dancing, joking, very extrovert, drinking, he was usually sick on the way home. If he did not know the company he went to the other extreme and sat in silence, looking like a hunted animal, never making any attempt to socialize or be agreeable. He did not like the husbands of any of my friends so we never visited them, and he made remarks which ridiculed members of my family, until I fell out with one of them, when he bent over backwards to be nice to them.
He decided to give up smoking when he was about 16 and that was it, he never had another cigarette and did not seem to have withdrawal symptoms or cravings. He says it is just willpower. If he puts on too much weight and decides to go on a diet he just gives up food. When he decided to cut me out of his life it was as though we had never been a partnership and had never meant anything to each other.
When we first had a shop and a customer complained about a mistake that had been made, he just stood and looked at them. After I had told him he should apologize to the customer and put things right, he did so.
If the children tried to cuddle him, he used to say “you’re potty” or “put me down, you don’t know where I’ve been”. I never saw him cry. He said he did cry when he went to see “Born Free”. He never asked questions or showed curiosity.
A man who worked with him for 3 years said in all that time he had never mentioned his wife and children. He was a good employee, never late, never ill, always cheerful, always willing. He seemed to escape to work if there were problems at home. “I’ve got to go to work” was his answer.
Since we split up he has not called me anything, to use my name seems to cause him enormous problems. When I said this to him he disagreed and said it was me. Since we split up he contradicts everything I say and opposes everything I say. He does recognize my material needs but has no perception of my emotional needs or anybody else’s emotional needs. He does not seem to have any emotional needs himself. He does not seem to be connected to memories that have involved emotion or feeling.
When we had the confirmation of Asperger’s Syndrome, he said if you took a new car to a mechanic he would find fault with it. He absolutely falls into the “extraordinarily tolerant” category, cannot accept the diagnosis, says he is fine as he is, very happy as he is, and cannot see why anybody should have a problem relating to him, if they do then it is their problem. He cannot see that it should make children unhappy and distressed because their parents have split up. He cannot see that his children should be distressed because he does not visit them for weeks when he has ample opportunity to do so. He signed their birthday cards with his name until told they would prefer him to put “Dad”.
Because my children are not like him I did not think Asperger’s Syndrome affected them. They are very affectionate and emotional and caring. But as I read Donna Williams’ book Somebody Somewhere, bells kept ringing as I recognized little things my son had done as a child. Not enough on their own to warrant attention, but taken all together I now think that he is affected, but only slightly – Asperger’s traits.
He did not sleep through the night till he was nearly 3, when he was a baby it seemed like he woke every hour but was about 4 or 5 times. He was not interested in soft or cuddly toys. He was very clingy and incredibly shy. At Mums and Toddlers group he would not leave my side to pick up a toy a yard away. Numbers fascinated him and when he was 3 kept asking me “what’s the highest number?”
When an Estate Agent came to our house when he was 3 he hid under the table. When we moved he kept saying he was not going, my sister looked after them for the day and when we went to pick them up he ran and ran all round her house so we could not catch him. We took him to the new house and he sat up in bed and said he was not staying and was going back to the old house. He was very difficult to feed after about 18 months and practically grew up on whole-wheat cereals and milk and vitamins. He did not seem to feel hunger or know what feeling hungry was.
When we all sat down in the evening to watch the television he drove us mad tapping his foot on the sofa. When we went out in the car for a drive we had just set off down the road and he would sit on the edge of the seat and say “Where are we going?, Where are we?, Can we go back?, What time is it?, Is it time to go back?, How far is it?”, etc etc. When he was about 4/5 I used to dread him waking up in the morning but couldn’t put my finger on what was the matter. Every time I had decided to go to a child psychologist he would change and go to the other extreme, too good. When he broke his arm he did not cry. When he went in hospital age 6 he did not fret.
By the time he was 5/6/7 he was OK to live with. He was a teacher’s delight, bright and attentive and always got on with his work, never messed about in class, every teacher gave him a glowing report and said they wished they had a class full like him. He did not do mischievous things. After his first term at University he came home and said his new friends had said he was “slow”. He wore a shirt he received as a present and then wanted to take it back to change it. I sometimes have to ask him if he has used his deodorant.
I could go on and on, but hope this is enough to help other people.