It’s been a while since I posted. Shortly after learning of my diagnosis around five years ago, my partner was expressing her frustration with me. Her friend suggested that perhaps I didn’t know what I didn’t know. At the time I thought that was quite stupid. Now, I know it’s the truth. My lack of common sense sticks out and is silly to deny. One example would be the last time we went kayaking. While landing, I slipped and the water came in to my boots. It’s winter,so the water was very cold. After putting the kayak away, I took off my boots and slipped into sneakers. My partner asked me if I had changed my socks. I didn’t. So now my feet were wet and cold, and my shoes are wet. In the end, I bought some socks at Walmart and we had a big laugh! It’s good to laugh at our mistakes!
So, what else is there that I can’t see? Peeling the onion means, for me, looking at the different layers, going deeper and deeper. After looking at various layers there are several things I have noticed: I really can’t read people’s faces, particularly their eyes. Even my partner. Nothing! I have great difficulty expressing emotions, except anger. I can express my emotions to animals or young kids but it’s much harder for the people I am close to. I respond emotionally to my partner as if she’s challenging me. This is a response I developed in my early adolescence to my mother. What is frustrating is that I know that this response doesn’t reflect reality but my response is so machine like and at times I feel powerless until I realize that I am back in control. It’s very frustrating! This machine-like behaviour seems resistant to change. Sometimes I think that these types of behaviour are “autistically driven”. In animal behaviour we call this type of behaviour Fixed Action Patterns. They are wired in, or present at birth like reflexes. They’re difficult to impossible to modify. It’s not an excuse, but an understanding of what is required to understand the difficulty of change. I believe that there aspects of autism that need to be accepted by NTs as different but functionally the same. There is no rule that autistics have to behave like NTs. In fact, that is ableism.
With the last statement in mind it seems that there is an issue of how much behaviour we as autistics need to modify to “fit” socially in the world. For younger folks the answer would probably be “Why! That’s ableist!”. But for those of us who have be fortunate enough to live to be much older, the notion of fitting in is less threatening. In reality, we autistic survivors had to fit in as children because, in my case, autism was unknown at the time (I am 75).
When I was first diagnosed, I suddenly started stimming and having meltdowns. Then slowly, I began to mature as an autistic man and most, but not all stims began to quiet down. I haven’t had a meltdown in over two years. It was like a dam of autistic energy broke.
All of the changes that I have described are the product of peeling the autistic onion. It is, at times, painful because I can see the damage that not knowing for decades has caused. I will continue to peel as I continue to grow. More later.
I want to share the following event. Some moments in life are so joyful that
they have to be shared.
“We’re going down the river”. The text triggered both excitement and anxiety. I was excited to kayak the river again. I was anxious because it would be the first time going down the river since my neck and spine surgery last December. I had already kayaked a few times but the river demands a stronger skill set due to the current and the sudden appearance of obstacles in the river. Although it had rained hard a few days ago, the river level was dropping fast, so staying very alert is required.
As I dragged the kayak down a path to the river, I could hear the rushing water. My anxiety level rose. Then, I could see the turbulence in the river which did nothing to calm me. I asked my partner if they felt nervous. She said “Every time”. That helped. Nothing to do now but get in the boat and go. I watched the others launch and followed their route through the initial turbulence. It was a very easy beginning!
What followed was six hours of breathtaking beauty mixed with a few moments of terror while almost capsizing twice. The weather was perfect. The water was fantastic. There were many salmon jumping out of the water. One huge salmon just barely missed my boat, splashing me as it swerved to avoid hitting me! Salmon were spawning, there were many Bald Eagles around. A Merganser duck herded their babies quietly past us. A natural world spread before me in all it’s power and beauty.
By the end of the trip I was both tired and completely saturated with the beauty of the river.My performance was good. I was a good sport, which used to be difficult at times. My maturation was reflected in my social behaviour and it felt really good. A magical magnificent day.
As I have reviewed my behaviour over the decades, one thing has become clear. I do not have a strong common sense aspect to my thinking. When I was 8 or 9 I had read the entire children’s library books, but ask me if I knew what “A stitch in time saves nine” meant and I had no idea. In fact, I didn’t figure it out until I was in my sixties. The other day my partner said “Use a spoon to scoop out what’s left in the bowl, not a fork”. Oh yeah, that’s a lot easier! This has happened a lot to me. I can analyze complex human pathology but had to be shown that, with some shirts, the little white label on the inside means it goes on the left. Or, matching the container size to the amount of food you want to save. Tying shoes. Buttoning up clothes. Finally, why can’t I remember to roll up my sleeves when I wash dishes?
There seems to be a relationship between my lack of common sense and my “weak theory of mind”. I have great difficulty understanding what someone is feeling based on their facial expressions. I can’t tell if I am boring them, embarrassing them or making them angry. Somehow, this clumsiness socially is connected to a lack of common sense, not to a lack of empathy. I believe my impulsiveness is also related to my egocentric point of view, which is driven by my autistic view of the world.
NTs can show a lack of common sense. My partner worked on a ski hill for years, staying in our camper. When water was needed, they would walk 20 meters to get water in a bucket. Meanwhile, they were surrounded by fresh clean snow, which they could have just scooped up and melted. However, they are normally very common sense oriented. This is more of a DUH moment than a lack of anything. For me, understanding these simple concepts is quite alien. I wonder how other autistic folks deal with common sense.
Just finished listening to a podcast by Dr. Rick Hanson https://www.rickhanson.net/being-well-podcast-empathy/ about empathy and it’s relation to intimacy. In the beginning he states that one must have empathy in order to be considered “fully human”. This statement is incorrect when it comes to autistic folks. We are clearly fully human, even if our level of empathy varies widely. Additionally, there is some evidence that autistics may actually have a heightened sense of empathy, to the point that it is painful to express empathy and that some autistic folks feel overwhelmed by empathetic emotions. Thus, showing strong empathy for animals is “safer” than showing empathy with humans. Also, there is strong evidence that autistics have difficulty with visual facial cues such as micro muscular movements and changes in eye expressions. This is labeled as “weak theory of mind”, or an inability to sense what is going on in another person’s mind. Dr. Hanson does not mean to insult autistics. His research on autism might need some updating, given the rise of neurodiversity theory, which counters the concept of only one type of “normal” human brain structure.
One interesting part of the broadcast was that with development of a stronger sense of self can lead to developing more intimacy, which in turn, can help with the development of more empathy. The ability to feel empathy for another person is more likely to occur if one has a strong sense of self. As an autistic, I have always struggled with my sense of self. Only after the events of the past two years have I matured and developed a strong sense of self so now I am better at understanding how others react to me emotionally. I still cannot read what other folks “think” by looking at their faces, unless it’s really intense, such as anger. Well, it’s a work in progress 😆
I recently went to my 75th birthday party at my son’s house in Wisconsin. My airfare was paid for by my niece. I also was there to meet my first born son, whom I had searched for 58 years. We connected through Ancestry DNA. The day was the happiest in my life. For the first time I was with all three of my biological children!
My partner wanted to go but didn’t have a passport. She said that I would be more relaxed if she weren’t there. It turns out that she was correct. I wondered why this was the case. After thinking about it I began to understand. Although my social behaviour does not vary much across situations, the way it’s interpreted depends on the context in which it occurs. With my partner it seems that any clumsiness with my behaviour, or any other behaviour such as impulsively interrupting, which I am modifying, is seen as due to my autism, while with others, including my family, there was no mention of my autism at any time, including when I was a bit clumsy socially.
My partners attitude is due, in part, to her role as an instruction coach for me. She has been very helpful and is invested in my becoming the best partner and person possible, which helps her deal with her PTSD. However, no one else is in that role. So, based on the evidence from my visit, my social behaviour doesn’t involve my autism worn “on my sleeve” And is not an obvious issue.
What does this mean? For me, it means that some aspects of my autism are no longer relevant to my functioning, but it depends on who I am interacting with at the time.
I define the word cohort to mean all the people in the world born in the same year. I was born in 1943. What does this mean? For example, there was no such term as autism in 1943. So, behaviour seen as autistic in nature such as stimming was not understood and, in my case, was suppressed by my parents and at school. I was forced to “pass” as an NT. Another example would be my values about gender differences. I have had to change how I see females. I now view the differences between men and women as minimal. There are a lot of issues that have changed across time and it is my responsibility to keep up with society. Otherwise, I would become one of those old guys that is frozen in Glory Days memories. Not for me! The glory days are the ones in which I am still alive! My point is that it’s up to us to stay engaged with life and to keep growing.
On another note, my relationship with my wife is getting better. She has developed a better understanding of autism. We now focus on acceptable differences rather than “Why do you do this instead of that“. I feel much safer than before. We are exploring sensual but not sexual intimacy, such as massage. I am finding touching to be pleasurable. I still have to consciously remember to express myself physically instead of just talking.
The last update is about my recovery from surgery: I had a phone consult with my neurosurgeon. He informed me that my walking might not get much better. I walk at about 85% of my former ability. I still lurch at times and walk a little like someone with mild Cerebral Palsy. That’s okay because I am still walking!
In about two weeks I will see my son that I have not yet met and his family, including two granddaughters! I am so excited!
So many changes! I am completing longer hikes. I kayaked the Johnstone Strait. My rehab is coming along well. I am opening up myself to more intimate behaviour with my wife. We are working together and have been eating together on and off. We both still want to live apart as we feel safe in our own space. We are starting to just look at my autistic behaviours as understandable. It is easier to accept our differences that way.
And now for the miracle. A few months ago I used Ancestry DNA to explore my heritage. In the results, they had a link to a section with data on possible genetic relatives. The first person on the list was my niece, the first born daughter of my sister, given up at birth, whom I had been connected to by a lawyer. The list seemed valid. I then looked at the second name. It was a male. I sent him an email and asked him two questions. He replied and after two more emails, we realized that he is my firstborn son! I had been looking for him for fifty eight years! I now have two granddaughters! To be handed this miracle is a blessing for which I am eternally grateful. It is the end of a sad period and the beginning of Joyous Time.