Anchor people – the flip side

Once I’ve written about the advantages of having anchor people, i.e., friends supporting you in life crisis, in situations where you feel unable to help yourself. Sometimes you only need a little push into the right direction and the clock is running. People with severe disabilities depend on professional assistence, life would be impossible or at least very difficult and rather uncomfortable. For people whose degree of disability will not qualify for having professional assistence, this way of acquiring the necessary help is closed. We need mentors and friends overtaking (for us) difficult tasks, like searching for necessary information, making a phone call, helping with shopping or just be there as a contact person in case of a meltdown or shutdown when communication with outsiders fails because of lack of understand for autistic needs. I had lots of anchor people throughout my life – otherwise I wouldn’t stand here as full-time worker with its own domicile. The flip side – as pointed out by my very appreciated blog colleague  – are “many, many connections where autistic people become dependent psychologically and structurally because they need him/her necessarily to be functional in the outside world.”

Mostly these anchor people have their own needs and sorrows due to manifold circumstances. It’s only a natural phenomenom to seek for like-minded persons. High-empathic people will find other high-empathic people. If not administered appropriately, a forum for depressed people seems to be comforting for all participants where you can share being down and having pessimistic thoughts. However, there is no way out of depression if you talk all the time about what is not working and what will probably not work in the future. You need some person as a model, to have a goal improving your current situation. Likewise, there is a reason support/assistence should be professional, to keep enough distance. However, seeking a psychologist is often expensive and sessions are too short to talk about all the current problems and needs to find solutions. Session intervals grow with increasing number of clients, so a regular basis is probably not given to address all problems in time. As a consequence, autistic people tend to leech on to their anchor people, risking overcommunication and overdemanding support– which is true at least for me.

What is the reason for it? I can only speculate here. I don’t know for certain. As a child I’ve been alone for a very long time. Real friendship didn’t exist until having first internet access. The vast majority of my communcation always ran through internet channels. Meeting people outside has always been difficult for me. I tend to shut down in large groups (starting with four people …). Some people are difficult to interrupt, a common symptom of autism is you don’t know when to interrupt. On the other hand, you are often interrupted by other people and I have serious difficulties to continue after such interruptions.  I’m mostly unable to talk about my (special) interests and don’t have enough (uninterrupted) time to built up my story. I need to think things through before speaking which is taking too long for most neurotypical discussions. For me, such group evenings rather represent an endless monologue consisting of different people. Interesting to listen to but I don’t say much then. The point is “real life communication” is exhausting and oftentimes unsatisfying for me.

With access to online platforms I immediatly used that chance about 17 years ago. I registered on many chat and forum platforms, I went through StudiVz, I tried facebook but I didn’t have a smartphone before 2015. During my time on a larger weather forum, I’ve written about 22 000 posts within a couple of years, around 1% of all posts on that platform. A clear sign of “online addiction”. I noticed some bad behavior changes afterwards. I tended to be arrogant, unable to stand criticism and claiming bold statements. In stressful situations or when something unexpected happened I always had (have) felt the obligation to tell someone immediately, without consideration of his/her situation or emotional state. Before the internet access, I made costly phone calls (long before my autism diagnosis). I wouldn’t do that today. Phone calls are out of date, anyway. Speculating, the existence of internet isn’t the problem here but losing control of it. Whenever I have access to a low-threshold communication tool, I’m inclined to use it, not thinking through the consequences.

You sometimes hear, written communication is great for autistic people. Yes, the threshold to communicate is much lower than verbal communication one by one or phone calls. There is more time to shape your answers and questions. There also a flipside, though. I need endless hours to write an e-mail and the more personal, the more unsatisfied I am in the end when I hit the send button. Most of my personal e-mails are just too long suggesting I need some kind of justification of the content. In retrospective I often think it would have been better to write nothing than displaying logical contradictions and the pressure to justify my thoughts. Communication will always be a mine field, verbally and in written form. Yes, it sounds odd for someone writing hundreds of blog articles and hiking reports. It’s a different thing writing about special interests than about social daylife and emotions.

I tweeted about chronical pain due to my bone marrow edema, about not remembering the last day without pain. Such statement is a problem in context. If you’re on a public platform or in close contact with persons with pain conditions, there is always context, i.e., there will be people with much more severe pain conditions. I experienced severe pain only two or three times in my life, before the kidney stones were gone. My foot edema is sometimes painful but not all the time I walk and mostly nonexistent when I don’t walk. In my reality bubble, the foot pain led to a complete change in my future plans – as far as recreation is concerned. I do hard with sudden changes and this was a big one. So the emotional pain weighted much more than physical pain. I focused on what is not possible anymore instead of enjoying what is possible. I tried alternatives but the goals were still too high to reach with my current foot condition. I had to think smaller and smaller, after liberating years of thinking bigger and bigger. In school I wasn’t good in sports, I often hated it. It has been a long journey to be so independent in my movements. I lost some parts of this freedom recently and the self-confidence to try something new. However, my statement about pain has certainly been exaggerated which I didn’t notice until it was pointed out suddenly. I’m still able to do lots of wonderful things chronically ill people can’t do. I should value that, at least by not issueing every thought in public.

I could write about the lack of control, discipline and structure, about how small changes throw me off the track. It is difficult to overcome these difficulties. Maybe autism is a disability, not a feature. I don’t want to accept it. Year after year, when I look back, I feel embarrassed about how starry-eyed I was. I made statements with the arrogance to know the only truth. Last year, for example, I wondered during and after the 24-hours-hiking tour that many participants gave up early as a result of foot and joint pain with alpine boots. The gave up before ruining their joints. I went through with running shoes and got bone marrow edema because running shoes are too soft for such a large distance on hard terrain. It’s an enduring learning process. My strength is being able to reflect it, to write about it. My weakness is that it happens very slowly and it encompasses quite a chain of thoughts leaving little space just to enjoy life.

Back to the start … overcommuncation online is a result of undercommunication. The past has shown I tend to loose control as soon as I use the tools too frequently (impressive number of o’s in a sentence …). I should hold back with my thoughts, question myself, think before writing. It sounds simple but it won’t be easy to accomplish.  Things went into deep shit in the moment I stopped my regular hiking tours, because I hadn’t have a plan B to balance my life. Side note… I drew the energy out of speeding hiking tours but I didn’t learn to simply sit down at a nice place for hours and enjoying the panorama. I need to focus more on reducing hectic pace even on a hiking tour (which – ironically – should compensate hectic pace in everydaylife). That’s a first step to accept my current state of what is possible to enjoy.

ps: this blog entry is written in english because it felt easier to express my thoughts in this very situation.

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