Autistic and married – Where are the autistic voices?
I have read quite a few articles and blog posts written by non-autistic people in which they talk about being married to their autistic spouses. They talk about the difficulties and the struggles, the good and the bad.
Articles or blog posts by an autistic person who is married to a non-autistic spouse seem incredibly rare. So this is me taking a step to change that. I am autistic and my husband is neurotypical. And there really is a lot to say about that.
Meeting with an ocean in between
My husband and I met online. When we tell people that they are surprised at first. We get some weird looks I cannot quite interpret. And over the years we have gotten some comments as well.
I have heard comments about how rare it is for people to meet online and actually end up married. I have been told that meeting people online is for people who have no social skills. People who are unable to get to know others in the so called “real world”.
All these comments are made from a negative point of view and they used to hurt me. They made me feel like I was inadequate. That I was some kind of misfit. They made me very conscious of my inability to get to know people through regular social interaction.
Today I think differently. It is true. I have great difficulty getting to know people offline. Social interaction is hard for me. I have failed so many times that I finally gave up and stuck to meeting and interacting with people online. Because online it worked so much better.
What is not true is the negative connotation of this. There is nothing wrong with me not being able to socialize offline. It is just a part of my autism. It is a part of me.
Of course I would like my offline social interactions to work better and I am working on that. But when I am having difficulties there is nothing wrong with helping myself out by going online. Life is difficult enough so I do not need to make it harder for myself by forcing myself to do things that I stand no chance of succeeding in.
So I am okay with that now. I met my husband online and there is nothing wrong with that.
Living together – Two worlds colliding
Like most people I did not grow up alone. I moved out when I was 18 which is the legal adult age in Germany where I am from. Since then I lived alone and I liked it that way. When I was 24 I got to know my husband and eventually we moved in together.
There is always someone there. Whenever I need help with something I have my husband to turn to. That is incredibly comforting and gives me a great sense of security. He can help me with many things that I used to have to force myself to do despite the immense stress they put on me.
My need for sameness does cause lots of trouble in our relationship but it also has two positive effects. The first is that it keeps our home clean. Whenever something is out of order I will fix it which leads to a very nice home.
That is something my husband benefits from greatly because even though he does not like to take part in the cleaning process he does enjoy when it is clean.
The second positive effect is that I always know where everything is. I am very organized that way. I can always find whatever I am looking for. My husband is the very opposite so he benefits greatly from my sense of order. If he is looking for something he can almost always be sure that I will know where it is.
There is always someone there. Yes, this is as much a negative as it is a positive. Being autistic I need a lot of alone time. I need my own space. I need my own order of things. I need the ability to completely shape the immediate environment of my home exactly the way it accommodates my needs.
With my husband being around all the time I do not get that total relief from social interaction and human contact anymore that I used to have when I lived alone. I also cannot just do whatever I want to our home as we both live there.
Even when my husband is in another room I can still sense him. I can hear him most of the time. It makes it incredibly hard to totally relax. To totally be myself. There are a lot of things about myself that I grew up to hide. Things like my stimming that I grew up to learn that it was not normal.
I used to do a lot of things when alone in my apartment that I just cannot do anymore. Things that I need to do. I am hoping that I will eventually be able to let him see all of them because hiding parts of myself is not healthy for me.
The constant social and sensory input is also difficult. I never have total control over how much of it there is as long as he is home which can be extremely exhausting.
Living with someone also means living with someone else’s way of doing things. That is a huge problem for me. His order of things is not my order of things. When he puts things where they do not belong or takes things away it startles me. It is like an earthquake of sorts.
There are a lot of things my husband does that I consider “wrong”. I am aware that they are not actually wrong because there are endless ways of doing everything in life. But because they are not done my way they are wrong to me.
And unlike non-autistic people who can just adjust, shrug it off and move on those wrongs cause me great distress.
I often feel that it is unfair of me to burden my husband with my intense need for sameness. I try to adjust. I have done so quite a bit. But I cannot do that with everything. And I cannot do that every day.
My needs are often exactly that: needs. I need things to be a certain way. Not because I want it. But because otherwise I am not well. Because dealing with change costs me a lot of energy.
Physical contact – Mimosa plant meets hurricane
You probably saw this one coming and yes, physical contact is a big problem in our relationship. I am happiest with very little, my husband would like a lot more.
Physical contact can be nice. It can be a way to show and share love. And it can be a very enjoyable way to get sensory input. I do not often feel the need for physical contact. And when I feel the need it is often not in ways that non-autistic people would consider enjoyable ways to be intimate.
I think that is because every physical contact to me is very intimate. I do not normally let people touch me. I do not need to take my clothes off or touch private parts to feel like I am doing something very intimate. None of my physical contact interactions are sexual in nature. They are ways for me to show affection and to get positive sensory input.
I do usually like holding my husband’s hand. But even when I don’t personally want to hold hands for whatever reason I usually still can without it causing me much discomfort.
The things I like to do like chewing on his fingers and hands, biting his shoulder, running my fingers over the different textures of skin on his body, are all unusual ways of physical contact. But I really like the sensory input I get when engaging in my autistic ways to show affection.
Another positive effect of my need for less physical contact is that my husband gets to experience other ways to show affection. Physical contact is so huge in non-autistic relationships that many men seem at a loss when asked how else to be affectionate.
And I have ways to show affection that non-autistics have definitely never considered. Like sharing newly discovered ways to stim with my husband. I made him smell the pages of a book once. He did not get anything out of it which I absolutely could not understand but this kind of stuff certainly makes for a very interesting and often funny learning curve.
Getting touched is generally difficult but getting touched while moving is a real problem. It often interferes with my ability to walk well. It somehow messes up my sense of balance.
It sometimes feels like my husband is not only touching my body but somehow gets fused together with it. That sounds very strange even to me but it is the best I can describe it. It feels like my body gets physically connected to his which throws off my entire sense of physical self.
This can cause discomfort when walking next to each other so that I often do not hold my husband’s hand unless we are still. The same can happen with any other kind of physical contact which is why any form of physical contact is difficult for me.
Most of the time it does not feel like someone is just touching me. It feels like they are reaching inside my body. Sometimes it is just extremely uncomfortable. Sometimes it actually hurts on my skin and the body layer underneath.
After a few years of being married I can say that physical contact is easily one of the biggest struggles we go through on a daily basis. His needs are very different from mine and we both want to make the other one happy. Yet we also both need to take good care of ourselves in order to stay healthy mentally and physically.
Communication – Megaphone meets church mouse
I generally talk loudly. I talk a lot. I have a problem with adjusting the volume of my voice. When I am interested in something I can talk about it forever. I have problems holding up an actual back and forth conversation and often fall into monologues instead.
My husband is generally a very quiet man. He thinks more than he talks. He is not used to sharing his thoughts and emotions.
My husband always knows what I think and feel. I am very open and honest about pretty much everything with him. In fact when somebody wants to tell me something private I always say “If you do not want me to talk about this with my husband, please do not share it with me.” I cannot have secrets from my husband.
I have the ability to talk about anything and speak my mind freely. This means any problem in our relationship and life together gets discussed. Everything gets pulled out into the open and talked about.
On the other hand I also benefit from my husband’s quiet ways. He is very thoughtful. He chooses his words. He is patient. When he does talk he usually has great insight and his words are meaningful. He calms me down a great deal with his quiet demeanor.
I can be very overpowering in conversation. When I get started with one of my monologues I will not stop until someone stops me. This can be very tiresome, boring and exhausting.
I have problems with empathy so watching my husband’s feelings while we have a conversation is very difficult for me. I often say very blunt and hurtful things. My husband then has to stop me and explain to me what happened. But even with explanation I usually cannot relate and actually understand. This often causes arguments.
My husband on the other hand is often too quiet for me. When we argue it is often just me who says things while I would like to hear his side of the story. Being patient with him is very difficult for me.
And his difficulty in being open with me does cause lingering problems in our relationship. Problems that do not get discussed grow over time. This bothers me a lot as I would much prefer to just talk about it, figure it out and move on.
The biggest problem with my husband being so quiet is that I often need verbal clues in life. Especially in social interaction I am lost without verbal help and guidance. This lack of communication can cause misunderstandings and arguments.
To be with other people or not to be with other people
The biggest difference between my husband and me is obvious to everyone who knows us even a little. He is an extrovert. He loves human contact, social interaction, and going out.
I am not an introvert but I have huge problems with human contact and social interaction and I am happiest inside or at least without other people. My husband loves to meet people. I love to be by myself doing whatever interests me.
I never get bored. I have extensive hobbies and interests, and all of them require me to be inside my own home. I can stay busy forever. I will always have an idea of what I want to do next and I never get tired of it.
I can entertain myself and have done so for my entire life. I bring a vast variety of ideas and interests into our relationship. I do not need to share them with my husband to be happy. But I gladly do if he shows interest.
This means two things. For one my husband never has a wife who needs entertaining. I will never pressure him into going out or doing anything because I am content just doing it by myself.
It also means that my husband gets to discover and explore all these funky things his wife is doing. Most of which are things he never even knew about. Or at least he never thought about doing them. But since I do them he gets to dabble into every single one and discover if maybe he enjoys one or the other as well.
For me my outgoing husband is what keeps me connected to the outside world. Without his incentive I would not meet other people. I would not go out. I would not go see a movie or go to a restaurant.
I also get to do things I normally would not do. And even though they are initially difficult for me they can be interesting as well. I am most thankful for his tries to get me to socialize. I value his patience and love in this field very much. He always has my back. He never pressures me into anything. But he gently encourages me and stays by my side to guide me through the experience.
My husband gets extremely bored when we are at home. He does not have any inside hobbies besides his computer and would like to just be among other people all the time.
I cannot offer him that and while I do encourage him to just go by himself he says it is just not the same. He wants to experience social life together with his wife.
I often feel pressured even though my husband certainly does not pressure me. I want to make him happy so I feel very inadequate when it comes to fulfilling his need for social interaction.
Finding a balance between his need to be with people and my need to be alone is intricately difficult. It feels like two opposite magnetic poles that can just never meet.
Finding common ground
Reading about how very different my husband and I are, one might wonder how we ended up getting married. Or why we are even together. The answer is of course that beyond all difficulties and differences we love each other.
I value my husband’s gentle soul. He is the most sincere, loyal, and trustworthy person I can imagine. I know he loves me more than anything. We have been through a lot and he has been by my side always. He challenges me while also taking me by the hand until I am good to go by myself.
We both enjoy certain things. We love good food. We enjoy watching good movies. We feel happiest surrounded by nature. We have two wonderful cats we love dearly. We love our home that we created together. We like riding our bikes together, and taking long walks.
We value loyalty, trust, and honesty. And our shared struggles certainly also do their part to bond us together. We stand up for each other. And after all we both already moved across the ocean to be together – first me when I moved to the US in 2010, now him when we moved to Germany in 2014.
I strongly believe that we are meant to be together. And I believe that in order to be happily married one must see the good as well as the bad.
Finding writings by actually autistic people about their experiences with being in a relationship with a non-autistic person was extremely difficult. If you know of one, please do leave a link in the comments!
I finally found these gems through the actually autistic twitter community and just have to share it. These are the blogs of Stef (who is autistic) and Jesse (who is not) – each of them blogs about their point of view of shared experiences. Do not miss it!
They started their blogs from the exact same place as I decided to write about this: They just could not find any writings like this anywhere online. About time that changes if you ask me!