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.
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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.

Show Your Pride

pride-feat-0728

So, on 18 June I went to my first ever Autistic Pride picnic in Hyde Park London. It felt empowering. It took a while to locate the group, Hyde Park is massive and the picnic was much smaller than I imagined, only around 30 people. I’d expected there to be a stage or at least a microphone. There wasn’t – only a small banner and picnic blankets and a circle of people on the grass. It was a scorching hot day, too hot to be comfortable, but luckily we were under trees. It was SO different to the LGBT Prides I’ve been to: so peaceful, and so welcoming. Many of the people already knew each other, but it didn’t matter at all that I’d never met any of them in my life. When we arrived we could choose stickers to indicate our communication needs and if we minded being photographed. People offered to share their food with me. There were a number of speeches, and later I stood up and said a few words at the open mic and was well received. I didn’t think I’d have the courage to do that – go me!

The only thing I’d have liked to see at Autistic Pride, other than it having a little more presence in the park, was live music. Not a big loud rock band but some quiet instrumentalists and singers. The LGBT prides I’ve been to have been for me all about the music. This year Pride in London had a women’s stage in Leicester Square for the first time. I didn’t go, (see my previous post “Autistic Pride” where I state my reasons why) but I listened live on the radio in my bedroom, and was torn. It sounded amazing. Now Manchester Pride, where I’ve been for the last 2 August bank holidays and is well known for its amazing music on the quieter Sackville stage, is all over Twitter and I’m torn again. My favourite singer is hosting and headlining again…..aaargh!  I said I wasn’t going to any LGBT Prides at all this year – well, since my last post my partner and I have been invited back to play at our local Pride, which is this Saturday. We’ll go, play, hang out briefly with a few friends, then come home early. I do really want to support LGBT Prides for so many reasons. But I don’t want to be overwhelmed, overloaded and shut down, screaming to go home after a couple of hours.  It’s an Aspie dilemma. At Autistic Pride, I experienced none of this, I managed to stay 4 hours. The only overwhelming part was the heat, and the crowds in general in other parts of the park. I’d highly recommend it – let’s make it bigger and better next year!

 

Book Review: Autism and Asperger Syndrome in Adults by Dr. Luke Beardon

“Never believe anything you read about autism” this is how this brilliant little volume begins, and this sentence attracted me straight away.  I am tired of reading books and articles along the lines of “All autistic people are this.””You can’t be autistic because you can do that.” “If you have a diagnosis, you will react to this in such-and-such a way.”, because more often than not, they don’t describe me. The first chapter may be off-putting to those who seek definitive answers about autism – but the fact is, there are no definitive answers. No one theory fits all autistic people. I am pleased that Dr Beardon debunks the myth of “mild” and “severe” autism. Of the autistic people I know, if would be hard to classify them into these terms. To an observer now, one might say I have “mild” autism, but if you saw how I was as a child, that would be debatable. Very importantly, it is the effect of the environment on an autistic person that determines the outcome. I am living proof of this. As a child I exhibited what I now know to be classic autistic behaviour (stimming, selective mutism, obsessions, rituals, choosing to play alone) for which I  was bullied and ostracised at school, but because I had a positive upbringing and was always encouraged at home, and have also been blessed with intelligence and a great deal of good luck, I am now a flourishing, successful and mentally stable adult.

The chapter on empathy is particularly enlightening: I have been told so many times that, being diagnosed Aspergers, I must lack empathy, that I’d almost come to believe it. No, we just have a different empathic style. I also believed myself to lack social skills, but now I realise that all I lack is the intuitive ability to pick up unwritten neurotypical social skills. This makes SO much more sense to me, as I have worked SO hard to pick up the social skills to enable me to function in a neurotypical world as an adult, and on the whole I succeed. It is just all about different viewpoints, like judging a cat on how well they can bark like a dog.

Dr Beardon is at pains to point out that the medical model of autism identifies it as a deficit – something to be fixed, cured or changed for the better, and that this needs to change. I never believed there was anything “wrong” with me, either as a child or now. At one time, left-handedness was seen as “wrong.”, when all that was needed was for society to make some adjustments like designing tools for left-handers.

Some chapters apply to me less than others, for instance the one on sensory profiles, (apart from a low tolerance to ongoing loud noises, I don’t struggle greatly with sensory issues) and the one on anxiety. I am pleased that Dr Beardon states “being autistic does not mean that one will automatically be anxious”. The example he gives, of a woman being anxious because her friend turned up late for a lunch date and with another unannounced friend in tow, would not apply to me now. It may have done when I was younger. Now I would think “only a few minutes late, it doesn’t matter” and “how nice there’s a 3rd person, more chance of interesting conversation and less spotlight on me”. The other example he gives, of a man being pedantic with words to his boss, equally doesn’t really apply to me now. I’ve been in similar situations a few times, and got that “shut up you annoying smartarse” look enough times that I wouldn’t bother now, or if I did it would be very tactfully.

The chapter on diagnosis and identity should be required reading for ALL who are seeking or have recently obtained a diagnosis. I love that he refers to the process as “identification”, as the word “diagnosis” implies that we are ill or at least lesser beings. If anyone is in doubt as to whether to pursue a formal diagnosis, I hope this chapter will convince you. Yes, autism is a “label” but so much better than the other “labels” we would probably get if we weren’t diagnosed. Rude, arrogant, aloof, insensitive, unfeeling – I have been called all of these at times, I KNOW they are not the truth and before my diagnosis I was always puzzled as to their use, because I could never understand why I was being labelled this way, when I was trying so hard NOT to be any of these.

The final part of the book is a self-help manual for autistic people in particular situations: higher education, employment, relationships and parenthood. If this is you, Dr Beardon’s guidance will be incredibly useful. These chapters should also be required reading for neurotypicals in these institutions, to help understand us.

If you only read one chapter however, I would recommend the final one, “Celebrating autism.” We sometimes get so bogged down in reading all the negatives about the condition, that it is important to remind ourselves of the positives. I can tick pretty much all of the boxes in the positive characteristics Dr Beardon describes. Yay! I will keep this chapter close at hand for whenever I need a pick-me-up!

I’d also like to add that this book is TOTALLY non-sexist, and everything in it could be applied to both sexes.  Other than the autism books I’ve read that are  specifically aimed at women, every other book I’ve read is either male-centred, or has broad generalisations like “autistic men are this, and autistic women are that.” I applaud Dr Beardon for this.

Thank you, Dr Beardon, for writing the autism manual that I wish I’d read three years ago when I was just beginning to question whether or not I was on the spectrum. It has helped me and will help so many others.