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.

Empathy explored

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 😆

Autistic behaviour and context

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.