Autism and anxiety, Pt. 1

I am not who I think I am. This raises the issue: Who am I? How to begin this? There are so many layers. One that really stands out is the layer at the top, the one that exposes me to the real world. This is my social desirability layer. The connection of this layer to lower, more intimate layers is tenuous at best. How many layers are there? It depends on when I look and in what context. Some days it seems like there are none. Other days it’s almost endless. Thousands of layers, like tiny layers of pastry. A reality cake of past events, as complex as life with all its twists and turns cooked into the recipe. Sweet moments sandwiched between bitter relish.  Passion overwhelmed by grief. The intermingling of absolute life beauty and the endless smoke of death. Memories piled into an infinite stack of pancakes.

These layers can seem like soap bubbles. They are clearly visible. Then, gone! Perhaps our minds are more like strawberry jam, which looks like one mass. Then, when you look carefully, you can see the tiny seeds. Or, there are no layers. It may just be an illusion to help us understand consciousness. Regardless, autism is a foundation of the neurotype.

When a child is born, they are confronted by a barrage of stimulation. They cry and are comforted usually by the mother. They quiet down and begin a period of visual scanning of the environment (known as the quiet alert period) and, at the same time, bonding occurs between the mother and child, through touch and odour,. This process may not occur in the autistic child. If the autistic child is overwhelmed by what could be called stimulus overload. That is, given that stimulus overload Is a common issue for many autistic people, it’s not much of a reach to understand that a barrage of stimulation at birth could lead to a strong withdrawal response by the autistic child.This response becomes a primal fear which then becomes an internal stimulus to withdraw into oneself. This sets up a pattern of aversion-withdrawal, developed at birth, that can alter perception and is persistent. This may help to understand the high levels of anxiety consistently reported by autistic people. 

This concept would predict that, regardless of which level of consciousness, a high level of anxiety will persist. So, in order to explore different levels of consciousness, understanding the role of anxiety is required.  As an example, whenever I have to go into a situation where there is a lot of people, I become anxious. Why? Rationally I know there is no danger. Irrationally, my body is preparing for a flight-flight response.IMHO anxiety is the primary reason for so-called autistic responses, such as stimming. 

However, as an autistic, I understand the healthy aspects of stimming, so anxiety may play a different role, similar to NT anxiety, which I will address in my next entry.

It’s been a while…

I have been very busy living. My autism seems to be less of an issue lately. I find myself focusing on overcoming a depressed mood. I believe my depression springs from the loss of my identity when I was first diagnosed. Now, I am dealing with impotency due to a medication. So, it’s a slow climb, in terms of building self esteem.

I am beginning to see myself as an autistic 76 year old man/child. I say man-child because I am chronologically an old guy, while at the same time, some of my behaviours are child-like. My lack of common sense, my difficulty seeing the gestalt or big picture and my defensiveness are some behaviours that stand out as child-like. These are related to my autism. I have accepted them as who I am. I work on them, especially the defensiveness, as being less defensive is a positive outcome. I believe that awareness and acceptance are the key to healthy adjustment to a autistic life. I would like to hear from others on these points.

The ABA controversy

My partner and I had an interesting discussion about ABA therapy for autistic people. I pointed out that there is a strong movement which criticizes this type of treatment, claiming outcomes such as PTSD and other traumatic issues. I expected a typical allistic response focusing on the positive outcomes. Instead, I was asked what the differences were between autistics and NTs (neurotypicals) when it comes to basic social values such as politeness, concern for others, safety and other basic human needs. The answer is no difference. So if ABA can work to teach different behaviours , what’s the issue? It is not the method used, but the rationale that is the issue. When Lovaas developed ABA, the goal was to “normalize” autistics. This is the heart of the issue. Using the concept of different  neurotypes as a framework, “normal” becomes specific for each neurotype. This rejects the notion of one “normal “ for everyone. While ABA is a viable method, it must be within the context of normal for that specific neurotype. For example, stimming is considered normal for autistic neurotypes. To suppress stimming in an autistic child would be considered an inappropriate therapeutic goal and could be interpreted as an allistic goal, and therefore perhaps cruel.

Recently, there seems to be a rise in autistic on-line groups taking a more adversarial position concerning ABA therapy. Claims of PTSD due to ABA are on the rise. It seems important to me that these claims need to be researched to help understand the true role of ABA in these situations. I sense a building of “us verses them” (autistic verses allistic) thinking. IMHO this will help no one but seems like a way for some folks to express their frustration with some of the mistakes that have occurred while trying to deal with their situations. As our understanding of autism increases, a more inclusive and respectful point of view of neurotypes, and a more appropriate use of ABA will emerge.

Autistic? Okay!

When I received my diagnosis I went through a series of psychological changes. My first response was denial. Not me! I was too smart. Too successful (haha). This didn’t last very long. I knew there was stuff about me that was different from other folks. So, I began to read about autism, specifically “Aspergers “ . Many of the traits described fit me. At that point my behaviour began to be a lot more “autistic “. I began to have meltdowns. I started stimming. I still don’t understand why this happened but it has been documented before (see Phillip Wylie, Very Late Diagnosis of Asperger Syndrome). My partner had been told that I was like I was because I didn’t know that I didn’t know. They were correct. So, I continued to struggle. The situation became difficult between myself and my partner. Then, after having a huge meltdown I was required to leave the house. This led to a new phase. I needed to learn how to accept my autism so I could move on.

I moved into a cabin. I had to relearn a lot of skills such as cooking everything for myself. I felt lost, frightened and very angry at my partner. I still couldn’t see my true role in the whole problem.  After a few months where my partner and I weren’t allowed to have any conduct,  we met secretly one evening. This began a process of trying to figure out what we needed to do. It was, and still is a long process and there were and still are issues to work on.

Looking back, the last 3.5 years have been a slow, but steady growth period in terms of understanding and acceptance of my autism. The primary issue for myself and my partner revolves around building trust. The level of mistrust between us was very deep and will require a lot more work. Actually, it’s the level of trauma, which was very high and requires me to offer unconditional support without regards to my feelings, which can be inaccurate. I have had to learn that there is much about social behaviour that I don’t know that I don’t know. I have come from a position where I was convinced I knew everything. It’s like having a puzzle with one half of the pieces missing. Now I understand that empathy does exist and by developing a sensitivity to other folks feelings and by watching carefully their facial expressions, I am better able to accurately tell what is happening and what is  needed for supporting my partner and other people. This ability is central to a healthy intimate relationship. Looking back, I  can see how I came off as cold and uncaring. I understand what I need to do but I still have to be conscious of my behaviour so as to focus on being a loving, caring person. For me, awareness is the key to success.

Peeling the onion

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.

The River

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.

Common Sense, Cents, What?

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.