Adjusting to the New

My first response to new situations is usually NO. Like many autistics I prefer routines. They are predictable, and for me, feel safe. However, life isn’t always predictable or safe. So, since leaving the hospital, change has been the norm. First, my cabin was unliveable. I can no longer heat with wood since I can’t lift and cut the wood. I then lived a few days in a motel room. The owner of the motel then offered me a fifth wheel trailer to live in. It is just about perfect for me.

So, the point of all this is that the saying Good things come to those who wait, seems to be true. As an autistic, it’s the ability to see this that is a challenge for me. Words like stillness, waiting, patience, tolerance and acceptance now have a much stronger meaning.

A Startling Rediscovery

In my last entry I described dealing with aversive stimuli while in the hospital. By centring myself in a quiet place, I was able to basically ignore the chaos that one is exposed to in hospitals. This is sometimes known as cognitive control and it becomes easier to develop as one gets older. Of course it takes awareness of our quirks and aversions to exercise this cognitive control.

The Red Cross loaned me a shower chair to use as my balance is still not 100%. I put it in a very small shower (barely large enough to turn around in). I turned on the water. The water filled the stall with spray. At that point I realized that I could not get myself to step into the stall. I have a strong aversion to putting my face into water. When I shower, I slowly put my body into the stream but keep my face out of the water. So, I stood there and began to choke up with fear. After a moment I turned off the water and took a sponge bath.

The point of all this for me is Stay aware and be prepared meet all challenges, including some really old ones.

Surprise changes and adjustments

In last November, I was walking 6-12 km. per day and kayaking 2-3 times a week. Then, I had a violent coughing attack while driving. After that, I began to have issues with my arms and my walking started to break down. On Boxing Day I went to Victoria for an MRI of my spine. Two days later they performed surgery on my spine. I am now on the mend and am getting better every day. I can walk and my arms are good.

When I was put in the hospital I informed them that I am autistic. The surgeon placed me in a private room. I was frightened but okay. Two days after the surgery I was moved to a room with three other men. The biggest issues for me were the levels of stimulation; the lights, smells, noise and the food were challenging, along with remarks like I can’t tell you’re autistic or you don’t act autistic.

However, lying on my back for two weeks allowed me to think through a number of issues that I have struggled with for decades. One is so-called “magical thinking”. Like many on the spectrum, I have difficulty seeing the large picture of the world, usually known as the Gestalt. Without having a plan that would dictate what I would need to do, such as my higher education or a job, I would just do whatever I needed to do without thinking about outcomes or consequences of my actions. If, for example, in intimate relationships, it was time to move past the courting phase I would not know what to do so I would sabotage the relationship. I could not overcome my fear of emotional commitment, as I had no idea of what that meant. My inability to see another’s perspective kept me in an egocentric bubble.

Now I understand that everything a person does affects those around us and I need to keep others in mind when I speak or act in a specific way. My partner has been telling me this for many years. I can now more clearly see the issue and will be correcting the issue as it arises.

In future entries I will address other issues that have arisen since this experience has occurred. Thank you and I welcome all feedback.

More quirks

If knowing my quirks helps me to understand my autism more clearly, then it seems like a good idea to explore them. So, here’s a list of some more of my quirks.

I use the same dishes, forks and anything else I can without changing anything. I do what they call routinize almost everything.

I have a very short attention span if I am not interested in something, and I can focus for hours if I am interested. If I am not interested in what someone is saying, I will walk away while they are talking. Recently I learned that to do this was rude.

Socially, I seem to be clueless.

I seem to be unable to sustain a healthy intimate relationship. When the passion begins to subside I seem to be unable to go to the next level. I have been married six times. Only my current wife refuses to give up on me, although we are currently living apart.

I have more than one special interest. I can talk for hours without understanding when people become bored.

I seem to have little or no common sense. I could never figure out the sayings like “A stitch in time saves nine “. My question was always Nine what?l

I am sure that I have many more quirks. This is an ongoing process for me. I would like to hear from other folks who may have “autistic “quirks.

Stimming and other “quirky” behaviours

First, stimming is repetitive behaviour that results in burning off excess energy and helps calm the stimming person. Examples would be body rocking, hand waving, chewing and a host of other behaviours. There is a list somewhere on the internet that lists over 1400 stims. When I was a small boy, my stims were suppressed by my parents and in school. As I began my exploration of my autism three years ago, I rediscovered the different forms of stimming that I used as a child. Body rocking is a big one. However, I have learned to not body rock in public as people stare. It is my hang up, not theirs. I purchased a stim ring which has a ring inside another ring, from Stimtastic.com and it is very effective unless I am very upset. However, the stim that’s always been there, and the one that I use at home is finger chewing. I did not know it’s a stim!

Another “quirk” of mine is my difficulty with “common sense”. A recent example would be walking 200 meters to get water in the winter while camping instead of melting snow for water. Then there is reacting to part of a sentence as opposed to waiting for the entire statement. And of course, walking away from a conversation because I was “finished” talking and has no idea the other person was still engaged in the conversation.

Autistics have all kinds of so-called quirks. The real issue for me is that stimming is normal for Autistics as are other quirks. It does not matter what NTs think. We focus on how to be more comfortable with ourselves. We should be proud of our autism!

Labels

When I received my diagnosis I was initially relieved. Finally, I knew why I was “different”. That feeling did not last. As the reality that I am autistic sank in, my core identity began to crumble. Meltdowns replaced my angry outbursts. I became very confused. I felt bombarded by stimuli such as bright lights, which have always been difficult for me, now became paralyzing. This slowly became easier once I understood what was happening.

The initial label I was given was Asperger Syndrome. Everything I had read was accurate. Then, I began to become uncomfortable as it registered with me that the label Asperger Syndrome was for a disorder described in DSMV. Since I do not have a disorder, but am a different neurotype, I chose instead to use the term HFA or high functioning autistic. This label was comfortable until I watched an Ask An Autistic video that focused on the label issue. It was then that I realized the HFA label has an implied judgment “I am higher than you”. Higher in what? Now I am a 74 year old autistic man and I am comfortable!

Things best left unsaid and other irritants.

One thing I have noticed is what people say when they find out that I am HFA. Most are people that I love and respect. However, some of what they say is inappropriate to ask. For example, “You don’t look autistic “. What does an autistic look like? Or, “You don’t act autistic “. Or, “You have been such a success. You can’t be autistic “. I have a good friend who, when she heard my diagnosis, said “It must be wrong. You aren’t autistic!”.

The website Ask An Autistic, with Amythest Schaber has a show about what not to say. This includes the dreaded “Look at me when I am talking to you ” and all the ways autistics are verbally punished for stimming behaviours. Ignorance fuels this type of behaviour. People mean well but they seem to operate on stereotypes. Most older HFAs “pass” as NTs. I am not comfortable passing. I passed as an NT for decades without knowing about my autism. My autism is as much a part of me as are my toes. I celebrate my autism and no longer find passing acceptable. I try to be tolerant of others, something I didn’t do very well before my diagnosis. I now understand the need for tolerance of everyone, including well meaning friends.

Here is a link to Ask An Autistic.  https://www.youtube.com/playlist?list=PLAoYMFsyj_k1ApNj_QUkNgKC1R5F9bVHs . I have not received permission to post this but I don’t think there would be a problem.