Living with Asperger’s

Most Living with Asperger’s Syndrome information is about the individual who has it and how they can best function in the world. A great deal is written about children and maximizing developmental growth for someone with AS. But what about the people who live with the adult who has Asperger’s?

Living with the adult who was never officially diagnosed with AS, because they never did that back in the day (Asperger’s diagnosis in the 1960’s? Just didn’t happen.).

Living with the adult who learned via trial and error to survive in a world that didn’t understand what having AS meant – you were just always a bit “different”.

Asperger’s Syndrome is on the autism spectrum. Like much on the spectrum, an individual can have many or few of, and to varying levels, the “common characteristics” of someone with AS. Some of the more common ones are:
– Difficulty understanding social nuances/cues and body language.
– High discomfort/anxiety in crowds.
– Inability to express emotion or empathy.
– Difficulty in forming friendships.
– Love of routine. Anxiety if routines are broken.
– Excessive interest in one or two topics, with those interests often overtaking all aspects of life.
– Excellent pattern recognition and above normal intelligence.
Yes, many people will indicate that they might have one or two of these characteristics to some degree. But few people will have most of these characteristics and at high levels.

Imagine living with somebody who has all of those characteristics. And continues to be that way not because he won’t learn skills to change, but because he truly can’t. You as the one “living with Asperger’s” learn new skills to compensate. You become adaptive, recognize his routines and adjust your own, plan activities what will be within his comfort zone, adjust plans when you sense anxiety starting. Sometimes you don’t even realize it until those moments when you’re walking on eggshells to avoid an anxiety attack.

Retirement transition is about change. Most retirees talk about finding a new life rhythm (new routine). There’s enough research to indicate that multiple activities and social engagement in retirement is key to longevity. Now, imagine going through a retirement transition with someone who has AS. How do you create a new routine with someone who has anxiety with changes in routine?

I realized that part of my retirement transition challenge is fear that my changes will create un-resolvable tension in my relationship with my AS husband. I also realized that I can not impose my beliefs of what is good (multiple activities, social engagement), even if based on a lot of research, on someone else, especially someone with AS. And that is very, very hard when I want longevity for both of us.

Transition challenges resolved. No.
Living everyday with love. Yes

Picture Credit: Pixabay

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9 thoughts on “Living with Asperger’s

  1. Good luck with that! It needs to be talked about, for sure. People who live with us “over the long haul” need all the good information and support they can get. And that benefits everyone, us included. Thanks for writing this.

    Liked by 1 person

    1. thank you for your comment. this was a tough one to publish… as you say, so few people talk about it! I’m with my guy “for the long haul” – 24 years married this year. and yes, he absolutely “approved this message” as well. 🙂

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  2. Pat, This is a huge challenge. I wish I had some magic advice from all my research and reading on retirement. You are a very brave and warm person to handle this situation with love and to put it out there for the world to see. I believe you are also very resourceful. We all face challenges in retirement, some more difficult than others, and we are all in this journey together. So, my feeling is the more we talk about these things, the greater our chances of finding solutions or at least support. Best to you. K

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    1. Kathy – It’s one of the reasons I put it out there… it so often NOT talked about! So maybe someone else will say “I’m not alone” or share what’s working for them. One of the hardest things for me is when folks ask “why isn’t he doing…” all the things we know are the best for longevity/happy retirement, in a very “you should know better” tone. (NOT you!) By sharing this, perhaps that will stop.

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    1. I think it’s hard to share the things that are not the “fun, travel and happiness” without coming across whiney or depressed. And things are not bad with this, just different. Different enough to be considered really out of the norm and that is often hard to deal with when sharing my retirement transition with others. We want to be part of the tribe, not different.

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    1. Thanks Catherine. It’s probably one of the most personal blog posts I have ever written. It is something that is really not talked about … in fact, my sister was not aware that he has AS (she sees him only on the “big family visits”). It definitely impacts me more in retirement as we are now almost 24/7 together. Thought I would just be open about it.

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