Lonely, liking and sharing

I feel lonely sometimes. As a matter of fact I am quite lonely, because I make myself lonely. I’ve been thinking a lot about this lately. (This post won’t be very well articulated because my head feels like it’s filled with mashed potatoes.)

I know that if I responded more in conversations I would probably have more friends. There are a couple of other things that I theoretically could do that also would result in more friends, but the thing is that I can’t do it. I can manage reading through twitter, but I can’t handle conversations too often, and certainly not with too many people.

I can manage quite a lot of social contacts if they are superficial and I have no obligations, like in a facebook group where I participate in conversations when I have the energy for it. As soon as people get closer than that, I can only deal with a few people. It’s not that I don’t care about people – I care a lot – I just find social interactions exhausting most of the time.

This is shameful to say but sometimes I tend to feel more validated when people click “like” or share something that I’ve written, than when people comment on it. At least this goes for people I don’t know well. Sharing or liking something means “I’ve seen this, but I don’t demand more interaction from you”. Every now and then I read about people complaining that social media is full of too much clicking and too little conversation, but I really don’t agree. I have other blogs, besides from this one, and every time somebody shares or like something I’ve written, it means something to me. Every time. It still does, after having had my stuff shared for five years or so.

I love blog conversations. When I read a post by somebody else, my thoughts starts spinning, and I write something related to it. Then, a couple of days (or weeks, or months), that person (or somebody else) writes something as a comment on my piece. These are conversation with enough space to elaborate on ideas and thoughts, and a kind of conversations that have been a big part in how I’ve changed my mind on certain issues. It has shaped my understanding and I’ve learnt so much through these kind of blog conversations over the last five years.

I guess I’m rambling about this because I’m trying to understand my own behaviour better. I’m just trying to understand what I need and that it’s okay to not want hundreds of semi-close friends.

Update: I don’t mean that people aren’t allow to comment, you are. Otherwise I wouldn’t have made it possible to comment here. I’m just trying ot figure myself out, since I’m not who I thought I was.

Failing to navigate

At the moment, I’m thinking a lot about my childhood memories. The happy ones as well as the sad ones. Looking back at my childhood and adolescence, the most prevailing feature of my experiences are confusion. A never ending quest for understanding something that still is so hard to describe. Like I was trying to crack the code and figure out some kind of universal truth about life and mankind. Almost like I needed a theoretical framework to apply to life in order to understand something. What was it that I was trying to understand? Human behaviour maybe. Why people acted like they did. Why there seemed to be certain rules that I didn’t know, though I could sense their existence. Rules I was expected to follow. Rules I was punished for not following.

I think this is the main reason for why DBT was partly helpful to me. It gave me some sort of help to navigate. It made me less confused, at least in the beginning. Over time, the negative aspects became more and more obvious though.

Trying to understand this constant confusion that seemed to permeate my life for such a long time, I think this is a part of being autistic in a world that isn’t very friendly to autistic people. I was trying to navigate, I worked really hard on it, but I failed. Over and over. Today, as an adult, I’m trying to forgive myself and letting go of all the shame it created.

DBT as autistic – When you learn the rules but other people don’t comply to them

Recently I wrote about my experiences with Dialectical Behavior Therapy (DBT). It dawned on me yesterday that my experiences from DBT are even more complicated than I thought.

Not only did the skills I learned in DBT mask how demanding a lot of social situations are for me because I’m autistic. Another consequence from learning social skills in that kind of structured way is that I tend to assume that everybody else live by the same rules. Of course, this isn’t true.

I’ve had a fight with a family member for the last couple of days and when I tried to sort things out and tried to understand how this person was thinking, it became very obvious that we don’t understand each other at all. I apologized for that parts were I agree that what I did was wrong, but when I wanted to talk about what the other person expected and try to reflect on responsibility it didn’t go very well. In DBT we talked a lot about responsibility and reflected on how much responsibility that really is okay to take in a relationship with another adult. This is something that this person can’t even talk about.

I feel so ashamed. I’ve worked so hard to learn how to behave and not be a bad person and then it turns out that the rules I’ve incorporated aren’t as widely accepted as I thought. It’s not even possible to discuss these aspects with a lot of people, and that’s the big thing for me. This is something that I think happens easily when neurotypical perspectives are used in therapies for autistic people: The result isn’t what was intended, but nobody will take responsibility for it.

I really wish I had known I was autistic earlier, it could have saved me so much pain. I really wish I could have gotten guidance in life from other autistic people who shared my values.

(And just to be clear: I’m not claiming that DBT is only bad. For some people it can help, and parts of it helped me. I’m just reflecting on how DBT also had some really bad consequences for me.)

How Dialectical Behavior Therapy both helped and masked my autism

When I was in my early twenties I was tired of falling into depression, anxiety and exhaustion over and over again. My whole life had been a bit of a rollercoaster and I managed to get myself diagnosed with emotionally unstable personality disorder (also known as borderline personality disorder) and asked for Dialectical Behavior Therapy (DBT), which I actually got. To my surprise, it worked better than anything I had tried so far. My life improved in many ways and even though the psychologists and doctors claimed that this kind of remarkable progress was unusual nobody ever questioned why. Nobody ever questioned why the most frequent emotion I dealt with in my home assignments was fatigue. Fatigue isn’t considered an emotion in this context but fatigue and the lack of mental (and sometimes physical) energy was without any hesitation what was bothering me the most.

After I had finished my treatment I was considered cured. I didn’t fulfill the criteria for the diagnosis anymore and even though the fatigue was really bothering me, that wasn’t a problem according to the psychologists. I was told that everybody was tired and that I expected to have an unrealistic amount of energy.

During my year of DBT I learned a lot of very hands-on strategies for different situations in life and a sort of inner list of rules for social situations. It puzzled me because for a while I seemed to be almost “normal”. Now I was behaving the way I should. Now I was a real human being, a complete one. Not broken or faulty as I used to be. At this point I didn’t think at all about autism and I didn’t at all connect this experience to the possibility of me being autistic. Instead, I felt ashamed for myself and who I had been before DBT. I could never pinpoint exactly why. I didn’t have the knowledge nor the words to understand it. Today I phrase it as “what came automatic to neurotypical people didn’t come automatic to me”.

Many people will probably consider this a success story. I finally got help and learned skills necessary to live a happy life with meaningful social relationships. The thing is though, that’s not true.

Because I didn’t understand why I had needed to learn what I learned in therapy, I never understood that for people who can do certain things automatically it requires way less mental energy than for me who have to think through every step of a conversation all the time. I didn’t realize that I had a disability and needed strategies, adjustments, accessibility and different kinds of tools to not exhaust myself. Instead, the shame of my past personality made me try to erase it. I worked so hard on being the new, normal me with all my new skills that I had a new breakdown. I passed for normal so hard that I passed myself into a collapse. Because the fatigue only got worse.

I also missed finding other people with similar disabilities for support and I missed the possibility of an identity and a context. I missed the critical perspective that I need to ask myself how much I should adjust my behavior to the norm just to make life easier for other people.

When I finally got an assessment for ADHD almost ten years later, autism was overlooked because I had learned to come across as way too allistic. The skills I had learned in DBT, combined with the shame that had made me study peoples body language etc. made the doctor think that my body language was exceptionally coherent and that there were no signs of autism in our first meeting. The screening and assessment tools were by no means good enough. I passed.

I find it both sad and almost ironic that DBT both helped me to better skills in many areas of life (some of the coping skills for dealing with anxiety for instance worked well for me) but the social skills were practised to perfection which made me push myself into exhaustion again, but now also covering all signs of autism. On the surface it can look like learning new skills is an improvement and sometimes it is. However, sometimes it’s just masking. In this case, the behavioral changes in me turned out to harm me deeply.

 

Playing as an autistic child?

I’m reading “Pretending to be Normal” by Liane Holliday Willey, and some other books about autism, and even though I recognize a lot from my own experiences there’s one thing that’s confusing me. It’s about my ability to play.

From what I remember, I could play with friends when I was a child. Most of the times playing with dolls was more about making our own clothes and organizing different outfits for Barbie dolls, but sometimes I think we actually played in the sense “pretending that they were doing different activities”. From what I remember, we had a genuinely mutual interaction. Autistic kids are not supposed to be able to do this, according to a lot of the litterature. Does this mean that I can’t be autistic? Or are my memories totally wrong?

I preferred playing with one friend at a time. Sometimes I really wanted to play with friends but I also remember preferring to playing alone. The older I got, the more tiring it was to play with a friend. I remember many times when I preferred being on my own and sewing new clothes for my Barbie dolls, trying to imitate outfits from different movies.

When I look back at my childhood friends (the ones I had until I was around 10) I realize that most of them were a lot like me. We were a bit awkward and didn’t give in to peer pressure. One of them, who I’ve recently connected with on Facebook, describes herself as an introvert book lover who prefers silence and not to be spontaneous too often. I’m wondering if I didn’t perceive myself as more than a little awkward because I had friends who were like me. This is probably also the reason for why my parents and teachers thought I was social. The big question is: Did my social skills work kind of well because I could easily relate to my friends because they were like me? Was that the reason for why I thought most of the other kids in my class were weird?

It comes back to what I wrote a few days ago, that difficulties with theory of mind are strongly affected by if another person is autistic or not. Maybe it’s possible that my memories are right and that I’m autistic.