“Affected” by Autism?

Some people could look at me and say I’m not really affected very much at all. I have been asked several times why I bothered going for a diagnosis in my 40s. I have a good career involving my special interest, a great marriage, a supportive family, I have not had any significant mental health problems, I can pass as neurotypical if I need to, (at least for short periods of time.) For all these things, I’m extremely grateful. I feel I’ve been very lucky in my life.

So, I’ve been thinking about how autism affects me – and though you might not notice, it does, every day.

1) Feeling like an alien. Happens most of the time. Being around people and thinking “You are not my tribe. You could never be my tribe. We can get along ok for short periods of time, but overall we are just too different.”
2) Conversations can be hard work – processing what the other person is saying, reacting to it, getting my tone of voice and body language right, talking enough but not too much. Also memory for past conversations – I often don’t have a clue what we talked about last time.
3) Face blindness. I often have to meet people 3 or 4 times before I recognise them, unless they’re very distinctive looking, and even then I may get it wrong out of context.
4) “Zoning out.” If social situations get too much for me, I’ll just look blank and barely respond. People think it’s lack of interest in what they’re saying. It’s not, it’s brain overload.
5) Emotions. As soon as conversations turn to anything emotional, I will speak in cliches or just zone out. Again, it looks like I don’t care.
6) Getting a balance between social stuff and time alone. It’s a very fine line. Too much socialising, and I need to retreat back in, desperate to return to my solitary pursuits. Too little, and I feel lonely and unconnected to the rest of the world.
7) Because of all these things, and especially in my formative years, there have been long periods when I’ve had no friends to speak of. That is thankfully no longer the case, at present anyway, but I could at any time in the future be thrown back to a place where I have nothing and no one.
8) Facing Change. I get this sinking feeling in my stomach every time a change is coming up, e.g. Transition from holiday/weekend to work day & vice versa. I’ve always just felt the fear and got on with it. But that’s not to say it’s not there.
9) Some days I feel like I am only just on the right side of coping.

So, please don’t tell me I am not “affected” by autism. I’m not complaining, this is who I am. I don’t want in any sense to demean any autistic person who is perhaps more severely affected than me. I can probably relate to at least some of what you are going through. As I said, I feel very grateful and lucky.

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Doing Christmas – the Aspie Way

Christmas is a stressful time for many. So many expectations to conform to. So many traditions to uphold. Feeling that we SHOULD do it the way society tells us. We should have a picture-postcard, Instagram-perfect festive season, complete with sparkling tree, flashing fairy lights, mountains of presents and excess food and alcohol. We should have wall-to-wall TV: movies, box sets, Christmas bumper specials. We should invite all the extended family and neighbours round in one great social whirlwind. If we do these things, and only if we do, so we are led to believe, we will have a happy festive season. Infinite love and peace and goodwill will be extended to us.

We could, on the other hand, be like Scrooge. Why is the story of A Christmas Carol so popular? Because Scrooge at the start of the story is the antithesis of everything we are supposed to be at Christmas. We could give no presents, invite no one round, wish no one a happy Christmas, complain that it is all a commercial deception. We could even carry on our regular work, pretending it is just a day like any other. Was Scrooge autistic? Maybe he was, not that that’s an excuse for his behaviour at the beginning of the story. Perhaps it’s an explanation though.

I believe there is a third way, the way in which my wife and I have been celebrating Christmas for years. We have a very quiet, modest celebration, just the two of us. We have muted decorations, many recycled from previous years: no tree, just candles, baubles and a selection of cards we are lucky to receive. We don’t believe in the religious aspect of Christmas, but we do mark the day. In the morning, the lightest part of the day, we take a long walk through local park and woodland. We enjoy the peace of shops shut and no public transport. A flask of coffee is essential. The afternoon, as darkness begins to close in, will consist of maybe a game of Scrabble, maybe some festive choral music on CD. We will open modest presents, just a few small useful things each. We will have dinner at our usual time of 8pm: nut roast, roast veg and of course plenty of Brussels sprouts. We will have one or at the most two drinks, a glass of red wine or sherry, or a bottle of lager. We will probably not switch on the TV all day. We will read books, both quietly on our own and out loud to each other. We may take a bath with healing salts and scents.

We are lucky. We have the best gift of all, which is each other. We have enough, in fact more than enough to eat. We are relatively rich: Christmas does not bankrupt us for the next couple of months. We have leisure time, a full two weeks off work. We are able bodied and healthy, something we try not to take for granted. We are not tied down by children, we chose not to have any. We don’t avoid our extended family, but visit them on other days during the holiday season. We are not saying our way of doing Christmas is perfect, or the only way, or better than anyone else’s way, nor even achievable by many who may have commitments to family and traditions or who do not have the health and wealth that we have. I would just like everyone to be less hampered by tradition and feel free to do Christmas in their own way, whether that is alone or with a few select friends, pursuing favourite hobbies, eating what we like, using the festive season as a true time of rest and recuperation rather than the stressful circus it has become.

Social Failure – Or Success? Positive Re-framing

A woman in my Aspergers Facebook group was complaining recently that her whole life felt like a series of repeated social failures. I can relate to her so much, it has made me question – would I see my life in terms of social failure? Most of the time through school and uni, I thought friends were something that happened to other people. Others seemed to acquire them without trying, wherever they went, and I tried so hard and still wound up with none.
Some facts about me – At primary school I spent most playtimes alone, thinking about my network of imaginary friends. Other kids did ask me to play, but I really wasn’t interested in their type of games. I joined in sometimes because “it was what you did” but they were rarely fun. People, even those closest to me, thought I wanted to be left alone. I didn’t, at least not all the time. I just wanted to be around people who understood me.
Secondary school started off well socially, but after the 2nd year I realised I was faking it and went back to having virtually no friends. This time it didn’t feel like a choice and was a lot harder to deal with. I was also being called names and laughed at on a daily basis, only by a small group of kids but enough to affect me.
After the day of my final A level exam, I never saw or heard from anyone at school ever again (that’s not quite true -one person did contact me 10 years later through Friends Re-united and we met once for lunch.) The same happened after my last uni exam – I left the exam hall, and I was totally on my own.  I didn’t choose it that way, it’s just how it happened. I was and I wasn’t sad about it – I had plenty of good stuff going on in my life at the time that wasn’t social so it didn’t bother me too much.
As a young woman, often when I saw people I knew, I would cross the road to avoid them. Not because I didn’t like them or thought they would be unpleasant to me. It was just easier at the time.
On a recent survey I took, “How Autistic Are You” (ridiculous title I know,) I got the worst possible score in the Social section. It didn’t surprise me. I now, since my diagnosis, know it’s very difficult for me to make friends for at least 10 reasons:
1) I have social shutdowns. After 1 1/2-2 hours of anything social, however fun it is to start, my whole body will be screaming to leave and I’ll struggle to form words or process others’ speech.
2) I have mild face-blindness. I can be chatting to someone one day, see them the next day and have no idea who they are or what we chatted about. After 3 or 4 times of seeing someone I will probably remember their face, but still struggle with remembering the full content of their conversation.
3) I feel like an alien in most social situations. With the exception of my partner and many of my family, most other people – however lovely they are – just seem too “other.” I am pretty fluent in speaking neurotypical, but it still remains my second language.
4) I need a lot of time alone, to process and recharge. If I don’t get it, I become withdrawn and less functional.
5) I can’t deal with socialising in loud crowded places or large groups, as I can’t filter out the background noise, or I can sometimes but it’s very hard work.
6)  I now realise, looking back, I had selective mutism with my peers in my teens. It wasn’t a choice, I literally could not find words. Not talking at all did not get me very far with friendships at the time. So I didn’t learn the give-and-take of mutual exchanges that most people pick up naturally when they’re young.
7) I can’t do emotional conversations. If someone starts telling me about their partner leaving or their parent dying, much as I would like to comfort and support them, I resort to cliches and/or shut down and walk away. I’m not at all proud of this, it’s just how my brain works.
8) Humour – I can’t always tell when people are joking, or laugh when everyone else laughs. Sometimes I can work out intellectually why they are laughing, but it doesn’t tickle me. That doesn’t mean I don’t have a sense of humour, just not a neurotypical one.
9) I’m not good at reading others’ body language and non-verbal signals.
10) I have the common autistic habit now and again of “putting my foot in it” and blurting out socially unacceptable things.
Would you want someone like me as a friend? Probably not, if all you know about me are these 10 reasons! (I could also write at least 10 reasons why I think I make a good friend, but that’s another blog post!) To expect me to be socially successful in neurotypical society’s terms would be like expecting a runner to win a race when they start off a mile behind everyone else.
My diagnosis has helped me so much to make sense of all this and to see that I am not a social failure, and not alone by any means. Actually I see myself as pretty successful when I look at how far I’ve come since my school and uni days. I rarely feel lonely now, if at all. I still don’t really have any close friends except my partner (now wife!) of 17 years, and almost all the emails and texts I get are work – or junk- related, but I have a number of acquaintances – people I’d cross the road to chat to even if I wouldn’t especially seek out their company. Now, on a good day, I’ll go up to strangers and start conversations. I’ll even make the odd joke and get a laugh. It’s all about re-framing: this is how I am, that was my past, this is today and this is how I get on with it! It’s like someone who maybe left school unable to read, and now after a lot of hard work over many years they can manage to read a novel – it may not seem a huge achievement to anyone else, but to them it’s massive. I hope the young woman who posted on Facebook, and others in similarly lonely situations, will someday see their life in these terms too.

My article in The Guardian magazine

Last Saturday I had a little article in the Guardian weekend magazine, which has been shared over 1000 times!  I feel very honoured and am still slightly disbelieving!

https://www.theguardian.com/lifeandstyle/2017/sep/23/what-im-really-thinking-adult-autism

Most of the comments I have received have been extremely positive. There were only a couple of negative ones, one along the lines of “why bother getting a diagnosis at all” and another doubting my diagnosis because I have a job and partner and so clearly don’t “suffer” enough…….excuse me? Shows how much work there is still to be done in raising awareness!

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.