An Asperger’s Syndrome/ Neuro Typical Marriage
Presentation by “Emmi of Massachusetts”
Family Matters: Insight into Relationships and AS workshop 11-6-2010
Sponsored by FAAAS, Inc
Quote from Dr. Hans Asperger: “Many of those who do marry show tensions and problems in their marriage” (That is really putting it mildly.)
Please imagine a beautiful house built from bricks that have crumbled over 48 years, brick by brick, and now there is very little left. That is how I see my marriage or better yet, the relationship with my Asperger’s Syndrome (AS) husband, because it really is not a marriage. We are alone, together. Another way of putting it, we live at the same address and that is it. So why am I still married to him? I am a very loyal woman, and yes there are times I feel sorry for him, because he is so clueless about every day living. At this stage in our lives it would really amount to exchanging one problem with another.
Years ago I used to exercise with an instructor on TV. One day he recited a poem, someone had died, but because he had never really lived, he never really died, i.e. he never really did anything during his life. That is what I see in my AS husband, and of course that is sad. Please keep in mind people with AS FEEL and THINK differently, and each AS individual is unique.
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We met on a beach the summer of 1961, I lived then in New York and he lived in Massachusetts. In reading Dr. Tony Attwood’s book The Complete Guide to Asperger’s Syndrome, I am amazed how right he is about the attraction I felt for my future husband when we met. Tall and handsome, he had finished Law School and passed the Bar, and he was 10 years older than I am. Perfect catch for me, and some people at our wedding indicated so too. Little did I know then what was ahead of me. We have three sons, and our first born also has AS, he is now 45 years old and after years of struggle, particularly this year, he was accepted by the Department of Mental Retardation, not because of AS, but because of the resulting severe depression; and now an agency is taking care of him, and for that support and assistance I am very grateful. I suspect my husband’s mother had Asperger’s Syndrome, of course never diagnosed, she was very odd in many ways.
For this presentation I am taking the liberty of using the brochure from FAAAS: Adults with Asperger’s Syndrome, as a guide. You should know that my husband has not been officially diagnosed with Asperger’s Syndrome, he is much too insecure to submit to a diagnosis. He once said he does not believe in AS. He is 81 years old and with age AS symptoms magnify.
Early on in our marriage he controlled me with money. I had to ask him each week for grocery money. I worked for a few months after we got married, but stopped work two months before our first son was born. After that I had to depend on him for each penny. I changed that situation the day my youngest son went to Kindergarten. I found myself a part time job, but I was always home when the children arrived home from school. Luckily, in 1978 I managed to get a good full time job and became financially independent. Thank God for that. A few months into this new job my boss asked me if he could invite me to lunch in honor of Secretaries Day. I hesitated and said that I would have to call my husband first and see if it was ok with him. He gave me permission to go to lunch with my boss. This is a clear example of how he controlled me. He really did not want me to go to work. After working for my husband, without pay for about 6 months, why not get a job where I could get paid, and also having the benefit of health insurance for the whole family. We had no insurance because he was in private practice.
Communication is impossible with him. Most of the time I do not discuss anything with him, but there are times when there is no other choice. One absolutely cannot reason with him. I find it helpful to prepare myself in writing prior to talking to him so he would not drown me out. Earlier this year I tried this again and I expected it to last about an hour, well after about 5 minutes I could see there was no sense in continuing. I then suggested that we include a third person into the discussion. In trying to help him understand I used a verse from the bible, Matthew 18, verse 16: “But if you are not listened to, take one or two others along with you, so that every word may be confirmed by the evidence of two or three witnesses”. We discussed who that third person could be. At that time we had a nurse visit once a week to give medication to our AS son, who was living with us at that time. My husband suggested this nurse (he must have thought she was not a threat to him). I could not believe my ears! We agreed on a lawyer that he liked, but when the time came he changed his mind, so it never happened. His voice never changes, very pedantic and very boring. The few times we do talk, he will leave the room once he realizes he is wrong, but won’t admit to it. When I say I am not finished, he will say “But, I am."
The rare times I talk to him he is immediately on the defensive. In order to save my sanity I stay away from him, do not expect anything from him. I have gone through too many disappointments.
He has difficulty comprehending instructions. On our wedding day, he and his best man stood at the wrong place, even though at rehearsal night he was told where to stand. The minister came running to me saying that the groom was not there. Today we still laugh about it.
In earlier years, when we went to parties and there was dancing, he only knew one step, like a wooden soldier, but he said that people that he had danced with told him what a good dancer he was. He could have fooled me. So imagine now that he is old, how stiff his walk and movements are.
For years he only wears clothing from a well-known clothing outlet in Maine. In the summer he wears the same brand name khaki slacks and shirts, and in the cold season their corduroys and chamois cloth shirts. In very cold weather he wears an Icelandic sweater that he says is very soft, over the shirt. I call this outfit his uniform.
FOOD, his breakfast currently consists of an ice cream bar and a half of a muffin. In the evening, about 90 minutes after we had dinner, he makes himself a sandwich from pumpernickel bread, liverwurst, peanut butter, raspberry jam, cheese and mustard. He has been doing this as long as we have been married. This sandwich is followed by big portions of ice cream. Everyone leaves the kitchen when he prepares his ‘ritual,' so they do not have to see the mess.
He just recently closed his lawyer office, and that was at least 10 years overdue, because in most years he lost money. After many years of asking him to close his office, he suddenly gave us very short notice. We had to scramble to find room for his files etc. Luckily, I was able to make room in the basement by getting rid of two empty oil tanks, which we no longer needed since we had changed over to gas heating. Now my job will be to go through the stuff and get rid of a lot of it. He recently purchased a lap top computer, and is pretty clueless how to work it. We have to tell him the same thing over and over again. When most businesses changed over to computers, he said his secretary would handle the work.
Obviously he is unable to deal with changes. He only uses the computer to check his stocks and the Stock Market many times during the day. His mother used to go to her bank, daily.
The day my mother died I received a call from my brother giving me the sad news. I was at work and asked a good friend of mine to come over, and she said I should leave work and go home to be with my husband. I thought to myself, why go to him, subconsciously expecting nothing from him. But she insisted, and I did what she said. I met him in the parking lot of his office and told him that my mother had passed away. He said, “Oh that is too bad.” Like she had a cold! He had to leave immediately as he had a meeting in Boston.
He had no idea what trauma one experiences when someone close to you dies. He later showed the same behavior when his father died. He really does not feel empathy. Thanks to one of our sons, insisting upon my attending the funeral, which was complicated because she lived in Europe, we called a travel agency and booked the flight and charged it to my husband's credit card, because those days I did not have my own credit card. When he received the statement from the credit card company he became enraged, “How could you have done that?" I did not see grief in him when his parents died. I remember when his mother died, I was attempted to give him a hug, but he wanted no part of it.
Lack of common sense. Oh, yes big time! He drove up to Northern Maine to go bird hunting this week. That ride is much too long for him. He gets easily tired, and his vision is not good enough for driving anymore. I have not gone anywhere with him driving for that reason. But try to tell him that. So I hope and pray he does not get into an accident. He loves guns, so we had a gun closet built, nice and secure. Unfortunately he does not use the gun closet as he leaves the guns in the cellar. At least we got him to hide the ammunition in another location.
He has humiliated me many times. In the early 1990’s we used to go to a lovely Bed & Bath in Maine. He always sat at the head of the table for breakfast, like he owned the place. One morning he starting talking about all the beautiful girls from Canada in their bikinis, and all the beautiful girls he had known. He was in his element and could not stop talking. The rest of the table grew very quiet. I was uncomfortable. (And now I am angry that I didn’t get up and leave the table!) Later that morning one of the gentlemen came to me and apologized for the behavior of my husband. The owner of the Bed & Bath said, “Your husband was really going at it."
For many years Thanksgiving and Christmas was always at our house, when I was younger I enjoyed it. During the meal the food always ended up at his end of the table, never checking with the other guests if they needed or wanted samplings. I fixed that problem, now we serve the food on a buffet table. His family never took turns hosting holiday meals, with one exception. Once, his sister invited us to a hotel where they had really lousy food. I suspect she has Asperger’s Syndrome as well.
He does not understand family ties. I still have family in Europe and ever since I have been financially able, I travel there once a year. He would say, "Here she is, flirting off to Europe again." I would say, “I am only visiting my family." He makes my life miserable before these trips, so now I wait until the last minute to tell him. Once I just left and put a note on the kitchen table and left on my trip. When I returned he never mentioned anything about the note. He always asks me to write instructions how to use the dishwasher, the washing machine, the dryer, the coffeemaker before I leave. If he has not figured these things out over 50 or so years, he never will.
Because of him being so socially inept I do not invite people anymore, but just get together with my own friends. He tells the same stories over and over again, and says things that are between a husband and wife, which makes me and the other people uncomfortable, but he would never notice that. He talks and talks, never notices cues from the people surrounding him. He has the ability to talk things to death. A few years ago there was an art exhibit of Winslow Homer’s paintings he wanted see. I am sure that would have been interesting and fun, but he practically brain washed me to see it. I began to hate the idea so I did not go to the exhibit.
He loves Mozart’s music, and he really is obsessed with him. To him, there is no one better than Mozart. He has been talking about Mozart for years. In June of this year I went on a walking tour in the Czech Republic. We met the tour guides in Vienna and the walk ended in Prague. Walking is my biggest hobby, and he was so insanely jealous of me going on that tour that he made my life miserable before and after the trip. He said, “You are punishing me because you know Vienna and Prague are the places of Mozart, I have always wanted to go there." The truth is that he is physically so inactive that he hardly can walk to the mail-box. I doubt he could have walked for 10 miles in one day.
Speaking of jealousy, instead of being proud of me against big odds, I managed to be fairly successful in my career. He was furious when my company invited me to go to the annual top sales people appreciation event in Rome, Italy. He could not stand it and called me bad names. He kept asking what flights we were taking, but we had not booked them yet. He went to the travel agency to check on information about the flight. When I found out what he had done, my blood pressure went sky high and a vein popped in my eye.
He has no friends, because he does not know how to maintain a friendship. When we got married and he was 32 years old, he had no friend to be his best man, so one of my friends became the best man. There is someone he has been hunting or fishing with for years and when this person had surgery, I reminded my husband to send a card or call. No, he would not do that. He only remembers this man when he needs something from him.
There is one issue that really bothers me a lot and that is his lack of hygiene. He does take a shower for about 3 minutes, but for some unknown reason he does not use soap. He has problems with his skin, and I am not surprised. When he received a prescription from his dermatologist he asked me to put it on his back, I said I would but would have to wash the back first, well that ended that. I have been begging him for all the years of our marriage to please wash hands when he comes home from work, shopping and also after using the bathroom. Putting cold water for 3 seconds on your hands just does not do it for me. It is not only that he is not clean, but that for all these years he has ignored my pleas and that hurts me, and makes me angry.
It is time to finish telling you about my experience living with someone who has Asperger’s Syndrome. I have letters that I sent to my mother, and she kept them all, now I have a diary of many years. When I read those letters from time to time, I get upset about the way he has treated me and our sons as well. I have seen a lawyer, a physician and both felt so sorry for me that they did not charge me for their services. The lawyer did mention that I probably have grounds for emotional abuse. I have seen a psychologist/marriage counselor and he said you must feel like you are in a prison. He was willing to see my husband and me, but he said he would not mention Asperger’s Syndrome, and not to expect much. I did not go back to him.
My husband died in March, 2014 at age 84. There were great difficulties in his last year. He was diagnosed with severe eye problems and could no longer drive that was traumatic for him since he loved driving.
Further health problems developed, but he did not listen to the advice of the physicians and checked himself out of the hospital against Doctor’s Advice.
After Thanksgiving he was becoming very difficult to live with, he ended up in the hospital again around New Years with a minor heart attack, he refused surgery. Against the advice of numerous professionals and friends we brought him home, we did not put him into a nursing home. He begged to stay at home. The last month of his life I and one of our sons took care of him. My husband seemed to appreciate our care.
He never complained, he said had he was not in pain, but had problems breathing. We had the support of Hospice the last ten days of his life. He never spoke about the end, never said anything to his sons or to me, but I assume he knew.
He was baptized in 2013 because I asked him. That was very special.
Our Pastor wrote a sympathy note to me which I keep reading: “‘Emmi', what a witness of love and care you have given these last months. May God wrap you in love as you mourn this loss? Peace”
I am sad, but also relieved. May he REST IN PEACE!