What I’ve learnt in 17 months since diagnosis

  1. Pretty much all autistic people love cats. For once I’m with the majority on this one.
  2. No two autistic people are alike. It couldn’t be truer that when you’ve met one of us, you’ve met only one. I didn’t realise how true this was, until I started meeting several. So it’s best to have an open mind and never judge.
  3. I’m still the same person as I was before diagnosis. Life goes on pretty much as before. Nothing’s changed that much. But I’ve got a much better understanding of myself and my place in the world, a whole new special interest and have met many wonderful people that I couldn’t have dreamed about 2 years ago.
  4. Not all autistic people love Dr Who, gaming or anime. But most do. If you admit you have no problem with these but are not personally interested, never have been and never will be, you will get some VERY steely looks.
  5. Many autistic people think neurotypicals are The Enemy unfortunately – this is like feminists hating men, or LGBT people hating straights. If we don’t respect NTs’ diversity, how can we expect them to respect ours? Understanding needs to come from BOTH sides.
  6. The autistic community is pretty divided. Autism parents vs autistic adults. Person-first language. Self-diagnosis is valid or not. Interesting issues and worthy of debate but can’t we just all get along please?
  7. There’s a lot of rubbish on autistic Twitter and Facebook. There’s lots of good stuff too: really insightful articles and supportive individuals. But if your communication style doesn’t involve back-patting, point-scoring or moaning and whingeing, it’s very hard to feel a part of the online community.
  8. Autistic people sure can communicate. Many of us will argue tiny points to the death, in a very eloquent and persuasive manner. If we’re not so much verbal communicators, we will write. And write, and write. If like me, some of us are not interested in banter and arguments and just want a quiet life, we will be just as unnoticed as we are in the neurotypical world.
  9. Autistic people have lots of empathy. And lots of social skills. And lots of humour. Just as much if not more than neurotypicals, but in a different way. If I was in any doubt of this 17 months ago, I no longer am due to the wonderful individuals I have met who have convinced me otherwise! 🙂

Reflections of Autscape

So, last week I attended my first Autscape: a 3-day conference in Northampton run for and by autistic people. As a fairly-newly diagnosed Aspie, the booking and planning of last week took on great significance for me; an autistic “rite of passage”. Would I cease to feel like an alien there, in contrast to most other areas of my life? Would I finally meet “My People?” Would I maybe become “more” autistic by associating with those people? Would it change me in ways I couldn’t imagine? I guess these are questions many Autscape newbies have asked themselves.

I arrived a little late after a long and uncertain journey by 2 coaches and taxi. The first thing that struck me in the lounge area was the smell of BO. (Now I understand some autistic people have sensory issues with deodorant, or simply forget to apply it, but I have sensory issues with BO. Just saying!) People were sat round doing puzzles and making shapes out of geometric magnets. They all seemed to know each other already. I collected my conference pack and occupied myself decorating my name label with emoji stickers. I felt “more” autistic than everyone else there at that point. They were all chatting and laughing, not standing round looking lost.

It always takes me a while to adjust to new situations and people – and what a lot of people, estimates were around 160. It took me until the 2nd full day to start to adjust, and by then it was nearly time to go home. I attended most of the talks, although a lot of them went over my head, I need clear slides and/or to be taking notes for anything to really go in as my auditory processing isn’t great. The talk on high and low-functioning labels was most interesting to me as it’s something I and probably other late-diagnosed Aspies have thought a lot about. What is the function of a person anyway? A very interesting question which provoked a lot of discussion.

My favourite parts of Autscape were those involving music and arts. The piano recital, the singing workshop, and the performance on the last night in which I was lucky enough to take part. Music wins for me, every time. I even had a go at the mask making, although that was out of my comfort zone.

I didn’t make a large number of connections, but I did meet several inspirational people who will stay with me for a long time. The young person who flapped their hands a lot and seemed extremely happy. The person who kept getting up, walking round and interrupting big groups, but yet had a lovely conversation with me at dinner. The people who let me try out their noise-cancelling headphones. The person on crutches who said they were going to do a PhD “and if anyone discriminates against me, they can go f*** themselves” Well said! The many people who were thinking of, or who had, transitioned to a different gender from that in which they were born. One in particular who seemed very angry and hurt. I wanted to give them a big hug (although they probably wouldn’t have thanked me for that.) All these people don’t realise the impact they had on me – I’d like to say a collective Thank You!

Would I recommend Autscape? Absolutely. Was it challenging at the time? Yes. I came home exhausted and absolutely full but buzzing. Do I miss it now I’m home? Like hell I do. My only criticism was that it was too short. A full week would have been much better. It was of course hardly representative of all autistic people: many of us can’t manage such loud crowds, or couldn’t negotiate the planning and the journey, or don’t have the money to attend. Also it was of neccesity a very artificial environment, nothing like real life. Would I go again? You bet!

Alexithymia and me

      “Alexithymia is a personality construct characterised by the subclinical inability to identify and describe emotions in the self. The core characteristics of alexithymia are marked dysfunction in emotional awareness, social attachment and interpersonal relating. Furthermore, people with alexithymia have difficulty in distinguishing and appreciating the emotions of others, which is thought to lead to unempathic and ineffective emotional responding. Alexithymia occurs in approximately 10% of the population and can occur with a number of psychiatric conditions.” From Wikipedia. The article goes on to state that approximately 85% of autistic people are affected.
        I hadn’t heard of this condition at all until I started reading about autism. Of all the autistic traits that I have (some common ones I hardly have at all) this one is probably the most prominent in me. I don’t like the thoughts that come with it. So I have problems with feelings, does this make me some kind of sub-human, a robot, an automaton? In the name of research, I took the online Toronto Alexithymia test and the results came as no surprise. I scored “high alexithymic traits” in all categories. My total was 148. My results were: Difficulty identifying feelings 23, Difficulty describing feelings 17, Vicarious interpretation of feelings 11, Externally-oriented thinking 33, Restricted imaginative process 22, Problematic interpersonal relationships 29, Sexual difficulties and disinterest 13.
          To anyone who asks “What do you mean, you can’t describe your feelings? Surely everyone can do that?” I would reply: I can tell you if I’m OK or not-OK. Sometimes it’s not clear-cut: I’m OK-ish. Most of the time I’m pretty much OK, just on a level. Especially in the mornings, I’m a morning person. And especially after coffee, (though I only have 1 or 2 cups a day). I can tell you if I’m hot, cold, hungry, thirsty, tired or bored. If you asked how I was and the answer was not-OK, it’s probably for one of these reasons. But they’re not emotions, you say – they’re physical needs. Yes, I can sort my physical needs and that’s good. So let’s look at real emotions: I can probably tell you if I’m happy, sad or angry. Most of the time I’m none of those things. (My autism diagnostic report very accurately stated that I am a calm and measured person.) I can definitely tell you if I’m excited: the anticipation of some future event can make me all fizzy and bubbly inside and I want to jump up and down and flap. (#excited is a frequent hashtag I use on Twitter.) Although when the date of the event arrives, I don’t actually know how I feel about it. I am so busy negotiating the logistics of the day, such as getting myself to the right place at the right time, making appropriate social interactions, not letting sensations overwhelm me, that I couldn’t tell you how it’s going. It won’t be until several hours, days or even weeks have passed that I could tell you, or more importantly tell myself, how I felt about it, and even then it might not be accurate because the feelings from the actual day have gone. I’ve missed so many opportunities to respond to people based on instant feelings, that people think I’m cold or don’t care. It’s not that at all. It’s that I can’t do instant feelings.
      So, how have I managed for 46 years to cope as best I can with alexithymia? The answer is, I think, I have used logic to compensate. I’ve learnt from experience how people in general are supposed to feel and respond, and I’ve gone along with that. I know something has gone well, if the people around me have appeared to enjoy themselves, if they’ve talked to me and included me like a fellow human and I haven’t felt too much like an alien. I know something hasn’t gone so well, if I’ve felt awkward, people haven’t smiled, somethings felt heavy and uneasy. I’m getting there – I’m better at this than I used to be.
       Finally a note on alexithymia and lack of empathy. I don’t believe I am an unempathic person at all. I cry at films or music just like anyone else. A few autistic/alexithymic people may be criminals and psychopaths, but I believe that’s a tiny minority. Yes, I have difficulty reading and labelling others’ feelings, and knowing the appropriate response. But that is absolutely not synonymous with not caring. My response will sometimes be delayed, as I have to take time to think it through. I sometimes think it’s quite the reverse, I have too much empathy – how can most people watch the daily TV news and not get upset? I can’t. Best not to watch it. I think that because I have to filter everything through the logical part of my brain for it to make any sense at all, it enables me to think more deeply about many things than an average neurotypical person, and that can only be good.