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The other day I listened to a discussion about undiagnosed adult autism on National Public Radio (NPR). Autism often went undiscovered in older generations, making life challenging for afflicted adults who knew there was something wrong, but no idea what it was or how to deal with it. There are millions living with this condition and likely someone in your life as well. There may have been one in mine.
A few years back my daughter told me that she thought it possible that her mom, my ex-wife Pam, may be autistic. My daughter’s expertise is in early childhood development, she has some knowledge of autism.
In a September forum post, Final Decision, I started a conversation about assisted suicide after Pam suffered a devastating stroke. I was touched by the deeply personal stories posted in response both for and against.
Pam died the following week, it was a sad ending to a tortured life. While it would be disingenuous of me to say I mourned her passing, I have spent many hours contemplating our life together. Although there were years of marital, family, and individual counseling no one ever suggested autism as a possibility, but some of Pam’s challenges have me thinking that my daughter may have been correct.
For Pam, mentally processing daily situations was difficult. Miss-interpreting actions by friends as slights. Extreme reactions or judgments to things that the kids or others had done. An inability to handle minor conflicts in a rational and calm manner. Problems with employers. Awkward social situations. Depression.
So if an adult is autistic, how does their partner deal with it? How did I deal with it? Did my reactive behavior exacerbate Pam’s mental state? For me, coming home from work often felt like stepping into a pressure cooker. My yard work often turned into beer drinking rendezvous with neighbors. I couldn’t wait to get back to work on Monday mornings. I took on second jobs. Hanging out with coworkers after the work day ended… anything to get out of the house. You get the picture. How might things have been different if I knew then what I know now?
Is there someone in your life, whose life could be made better with the proper understanding?
Lately “diagnosed as as adult with autism or on the spectrum” has been in the news, posted to social media, and/or is the latest talk show feature. I am sure some folks are undiagnosed but it feels too popular. Why do our quirks, actions, misbehaviors, non-coping skills require a label? Does it help? Maybe it does. Somehow it feels like an excuse.
Dan, I was troubled by autistic traits when I was young. They are not the obstacle to social interaction that they once were. I’m not certain why. Maybe some other part of my personality that kept pushing me toward people, even though the skills didn’t come naturally? I was also motivated by the need and desire for money, and people seemed to be a part of acquiring it. After many years of working in a social environment, through experience with both positive and negative feedback from others, I “get along” with people. But my condition is mild, and every case is unique.
The key to relationships lies in your final sentence, doesn’t it? They get better when we turn our eyes outward from ourselves to the other person.
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While I’m wary of treading too much into clinical territory and thus my lay observations may be somewhat off, I tend to think that if autism is a spectrum then we’re all on it somewhere. Even for those that are supposedly neuro typical we all have our own quirks from introversion to avoidance to awkwardness in particular situations or extremes of extroversion or insincerity. And obsession with particular things whether it’s our hobbies or how we like the dishwasher stacked.
I’ve become aware of aphantasia through a few podcasts, one hosted by a comedian who has it. He says he cannot remember what his kids look like though he recognises them when they are back in the room.
Certainly the human mind is a complex and varied thing in itself. Nevermind when you’re dealing with 2 in a relationship and many more in a family.
BB I have had the same thought about us all being on the spectrum. Kind of like hearing loss, it’s un-detected up to a certain point.
Dan, your article resonated with me. I have a friend who has symptoms that are so pronounced, you wouldn’t have to be a clinician to recognize her problem. She has ADHD—Adult Hyperactivity Disorder. Although it is sometimes lumped in with Autism because there are similar symptoms, it is a separate disorder.
I would like to broach the subject with her but I’m afraid she might take offense. Unfortunately she has had conflicts with other friends because of her problems, and has taken issue with them because they have been critical of her, instead of showing concern and kindness. She is a good person and has good intentions towards everyone.
Tough subject. Everything you described has happened in marriages without autism. I’m a little leery of applying labels – we seem to do that very quickly in this day and age, followed by a prescription drug.
While I’m sympathetic, I don’t know there’s a lot we can do about it. Ideally, We should always be kind and supportive when dealing with strangers and the people we come across. When it comes to choosing a partner to settle down with, I would advise getting to know them a little better and not rush into anything so you have a better idea of what you’re committing to.
I wouldn’t be surprised to find I have a mild form of autism. I have always put my difficulties with personal interactions down to not getting to play with other children until I went to school at five, but maybe it’s autism as well. I have difficulty “reading” people and am aware I don’t always respond appropriately in the moment. This is now exacerbated by hearing loss, despite hearing aids.
I have recently discovered another difference from the majority of the population. I always thought the expression “mind’s eye” was a metaphor, but have now learned that most people see actual pictures. I don’t, and this phenomenon now has a name, aphantasia.
One of the great things about this website and forum is the abundance of information shared along with many perspectives on a variety of subjects. Kathy, you just provided me with an “Ah-Ha” moment of the day regarding aphantasia which I had not heard of before but could provide some very useful insight for me. Many thanks!
You’re welcome! It was a big surprise for me.
The article about aphantasia interests me. The word “horse” is also what I use as an example to describe how my mind works: If someone says the word “horse” to me, I see not an image of the animal but the spelling of the word.
Hearing and reading are different for me, however. Reading a book, I see the text the way what one AI describes as “cinematic imagination”: as my mind watching a movie — until I encounter an error (e.g., typo or grammar), which jolts me out of the movie and crashes me back onto the printed page.
That’s very interesting. Sounds like another variant. I have a concept of a horse – four legs, mane etc. – but I see neither a picture nor a word. I know what my imaginary horse would look like, but I don’t see an image.
Thanks Kathy for the link. I was not aware of this. I like the line that imagination is a spectrum. I’ve come to believe that most of human traits fall on a spectrum of some sort or another.
I never heard of aphantasia. Very Interesting link and thanks for sharing!
After more than 35 years of marriage my wife was informed by an experienced counselor (who has his own positive diagnosis) that she may be autistic. This year (#38 of our marriage) she finally got the official diagnosis – positive for the mildest form. (It used to be called Asperger’s Syndrome, but now it’s just ASD – Autism Spectrum Disorder.)
Now I can finally understand a whole lot more of what’s been going on in our relationship from the very start of the marriage. We’ve read books, gone to a bunch of counselors / psychologists (none of whom were able to pick up on her autism), joined a Twelve-Step program, and even spent a month in a residential counseling program. We were able to benefit from most of the input, but it never really gave us the peace and serenity we were seeking.
I have my own issues from my dysfunctional family of origin and she from hers, so our interactions have exacerbated my childhood wounds. Now I can see that many of those hurtful patterns are not nearly so intentional as I always believed – they merely fit the MO (modus operandi) of Level 1 ASD. For example, whenever I would tell her that some behavior, or choice she had made was hurtful or if I asked for a different behavior, I would get an explanation of WHY she had done what she did. My interpretation of the exchange was that what mattered to me was immaterial and that my feelings or complaints were totally invalid. (Invalidation is one of my core wounds/fears.) Now I’ve come to understand that she’s not engaging in purposeful invalidation of my feelings or requests; she’s just unable to see things from a different (my) perspective. The autism also helps explain our intimacy struggles – she basically has no “feedback loop” and can’t tell what works or doesn’t work. There’s no positive reinforcement for any behaviors in the bedroom. Everything is black and white; all behaviors / responses have to be memorized and there are no shades of meaning or nuance. Deep communication is difficult, because she tends to automatically assume what is driving my actions / behaviors, based on her point of view alone with no intuitive perception of what I may be thinking or feeling. Expressions of what I’m thinking or feeling (especially what I find upsetting) are often met with bewilderment. It just doesn’t compute. (The autism diagnosis also explains many more things – these are just some examples.)
So far, my only way to deal positively with her (admittedly mild) autism has been to educate myself on the characteristics of autism so that I can “press the pause button” and remind myself that things are not what my initial reaction to her is telling me. A very useful resource has been a blog at the following web site: https://kennethrobersonphd.com – Dr. Roberson is a psychologist who specializes in autism. In the past I would also purposely alter my route home from work to delay my arrival at the house. Sometimes when I was feeling particularly wounded / hopeless / depressed I would also leave the house to wander the neighborhood. When I was especially triggered, I would slam the door and drive off in a rage (endangering myself and countless others) to get away from the situation, thereby triggering her abandonment issues and her childhood struggles dealing with her angry father. Thankfully, having a better understanding of the dynamics of our relationship as it has been impacted by her autism has made these responses more rare, although I can still blow up now and again when I lose perspective.
We’re on the waiting list for a local counseling practice where she got her official diagnosis, but that’s been since June or July with no further communication.
Hopefully, my few thoughts will help someone.
-John (a.k.a. “Abu LaHya” – “the guy with a beard”)
My brother has Aspergers, but we didn’t know it growing up. We found out when he was in his 30s. Answered a lot of questions about our childhood. I definitely relate to a lot of what you said. Times can be challenging. I don’t have many answers.
John I totally relate to the slamming of doors and long drives. I too hope that by conveying our experiences we can help others. It’s also interesting that it took a doctor with the same diagnosis to recognize your wife’s symptoms.
Thanks for your post’s honesty, Dan. Looking back, I can think of many folks I’ve known who didn’t quite fit in, but I simply didn’t have the understanding that I have now. We still have a ways to go, but I like to think we’re more accepting and more aware than we were 30 or 40 years ago.