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

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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.

 

Autistic Pride

On 18 June I’m very excited to be going to London for my first ever Autistic Pride. Well, excited and a little scared. I’m not new to Prides – I went to my first Gay Pride in London in 1993 age 22. I identified as bisexual at the time, although I hadn’t had any kind of relationship and actually had no idea what I was. Three of us travelled up from Cambridge for the weekend; myself, a woman from the animal rights group and a young professor who was very active in the LGBT and feminist scene. I didn’t really know either of them but thought they were the coolest people and by hanging out with them some of their coolness would rub off on me! It was quite clear from the start I was the extra third party. They went round holding hands, although at least one was allegedly going out with a man at the time, and I tagged along behind. The whole experience was overwhelming: the noise, the crowds, the confusion. It was hard seeing happy people in couples and friendship groups. I didn’t feel I fit in with any of it. But I went again the next year, alone, travelling down from the north where I was now living. By this time I’d had some experience with men, and still believed I was bisexual. I got a little enterprise going selling homemade vegan banana cakes to the marchers. It was pretty successful. Having something to do helped a little, but I still couldn’t wait to leave. Someone suggested I stay on to the after-party. Er, thanks but no thanks. When the whole day had been an endurance test, I didn’t want more of the same.
For many years I didn’t attend another Pride. I came out as lesbian in 1997. I went to Manchester Pride, well mainly just the march part, in ’99 with my girlfriend at the time. It felt good to finally be properly out and with a same-sex lover, but again there was this feeling I couldn’t cope – the noise, the crowds, the drunkenness and bad behaviour, so we left early.
Fast forward a few years, and my home city, like many other parts of the UK, started its own Pride which I wanted to support. I even got to perform at it last year, my own songs, with my soon-to-be wife on bass. We were in a small tent with hardly any audience but it was still a great honour. In the last 3 years we’ve also been to Prides at Brighton and Manchester twice, to hear my favourite singer – but have decided, no more. I love the idea of Gay Pride: being in a majority for one day instead of a sexual minority, standing up as one against the homophobic atrocities that still happen in all parts of the world, seeing people being themselves and being happy. But the reality is that most Prides are the opposite of autism-friendly, and I’d rather avoid total sensory overload and shutdown.
So this year the only Pride I will be going to is Autistic Pride. Some people might ask: why would anyone be proud to be autistic? After all, many see it as a deficiency or disorder. I don’t; I see it as a neurological difference. The opposite of pride is shame, and countless times we are made to feel ashamed because we are different from the majority. The roots of the word shame come from “to cover” & hide who we really are. Shame reduces our ability to be true to ourselves and connect with others. Why should I be ashamed of who I am? I am hoping that, by standing up and saying, yes I’m autistic and proud, others who maybe are just stating their journeys towards diagnosis and/or self-acceptance will see us and say, yes I have this difference but I don’t need to be ashamed. Many of us were bullied at school and have had a hard time forging friendships. Many of us have suffered from low self-esteem and poor mental health as a result. We don’t need to resign ourselves to saying, this is just how it is. We can be the change we want to see. It feels like a political act to attend Pride, any sort of Pride. In an ideal world, no minority groups would need a Pride because we would not be oppressed. But we are so far from that ideal.
Autistic Pride may not be right for me. I can’t assume I’ll feel comfortable there because they are “my” people. I don’t know how welcoming they’ll be of quiet, late-diagnosed, middle-aged lesbians. I may not fit in at all. There aren’t many places where I do fit – but I’m willing to give it a go. Happy Pride!
(With thanks to Vicky Beeching and Phyll Opoku-Gyimah for their very insightful articles on Pride in the June edition of Diva magazine)

On Being a Happy Aspie :)

I am , for the most part, a happy person. This seems quite rare among autistic people, and it saddens me the number of us who suffer mental health problems, especially women. I read the other day on social media that “if you are an autistic woman with no mental health issues, you must have been living on a desert island.” I realise I am incredibly fortunate in my overall good mental health, I do not take it for granted or assume that will be the case throughout my life. So I’d like to share a few insights.

I had a very positive upbringing. I was always loved and valued unconditionally. As my dad is certainly an (undiagnosed) Aspie, my mum has several of the traits and various other relatives are at different points on the spectrum, I was always viewed as normal within my family. My quirks and special interests were celebrated. I was undiagnosed then, in fact Aspergers in girls was unheard of when I was a child, so I never saw myself as having any kind of special needs or disability. There was never any doubt that I would go on to higher education and would succeed at whatever I put my mind to. I believe all these things are fundamental to a person’s mental wellbeing.

Having said that, my teenage years were not an easy time at all. Dad moved out when I was 12, leaving a general cloud of sadness over our house that didn’t shift for several years. The few friends I had made at the start of secondary school, abandoned me when they realised how different I was, and after around 14 I had literally no one. I stopped eating properly for about a year. This was the nearest I have come to having a mental health problem. I was never actually treated for anorexia but when I saw it on the doctor’s notes I realised I had to do something about it. It was always a dark cloud but I didn’t let it drag me down. This is because, as well as unconditional love from my family, I realised I had intelligence and talents. Academic work was never a problem for me, I threw myself into it and was lucky to have excellent teachers in my favourite subjects. Music was always my strongest area, and my piano teacher believed in me wholeheartedly. Religion was important to me too at this time, and when I was given the opportunity to learn the church organ and accompany services, I was thrilled. This led to me going on to study music at university, and later make a career in it.

I am incredibly lucky now in that I have a very supportive partner (soon to be my wife,) I have a good job in my area of special interest and we are financially secure.

Anxiety tends to be a big issue for us Aspies. I can’t pretend I don’t suffer from it at times, but it is mild and short-lived. I get sweaty palms and butterflies whenever I have to do something in public, deliver an important message or speak to an authority figure. But I rarely lie awake worrying about stuff. I don’t have a problem with journeys of any kind, shopping, crowds, medical appointments or many other situations that Aspies seem to worry about. That’s just me. Yes, I frequently get tired and overwhelmed due to not having many filters on my senses and having to work harder than most to process conversations. So I take rests, take time to re-set myself then I’m OK again. I’m not saying it’s easy. Apart from my partner, I  have few others who really understand me. At times I feel I’m on the brink of mental difficulties, and one little thing could push me over, but I always seem to manage to pull myself back.

I’m not someone who experiences meltdowns. Yes, I get agitated at times but it’s more a quiet agitation. I do have shutdowns, mostly after being around people too long, then I go mute and blank and just need to leave. I now know that I need to take social breaks. Social media can also be a trigger: although I love reading Twitter and Facebook I often feel bombarded by it, especially all the negativity on there. The solution is simple; just switch it off for a day each week at least.

I’m not good at knowing my own emotions: most of the time I couldn’t tell you what I’m feeling, except when I am happy, then I am ecstatically happy. Those who know me, know I grin from ear to ear, jump up and down like Tigger and clap my hands whenever anything really good happens. It feels like my body is filled with bubbles, and I don’t need drugs or alcohol to induce it! I wouldn’t want to be in this state for too long as it’s exhausting and out of step with most people around me, but I’m glad I experience this at times. My hope for other Aspies is that they too can find their niche, pursue their special interests, avoid what triggers meltdowns and depression, and find one or two people who truly understand them 🙂

 

 

Visibility

This week I did something very brave. My favourite lesbian magazine asked on Twitter “What will you do for #LesbianVisibilityDay?” As it happened, I had the latest copy of the mag in my bag to read on my lunch hour at work. So I posted a selfie of me reading it in the staff room, which got liked and retweeted all over. Maybe you saw it. I realised it was a potentially risky thing to do. In fact NEVER, in 4 years on Twitter, have I ever had such a reaction to one of my tweets. Luckily, amazingly considering the amount of homophobia online, I didn’t get any negative responses. Someone told me I was cute, someone sent me something really weird about Muslims and someone else sent me a gif of Bart Simpson backing into a hedge (?!?). I ignored them all and just laughed. I acquired a load of new followers, most of whom I have no desire to follow back.  I am proud that I don’t use an alias on Twitter, my full name is on there for everyone to see. I don’t want to be known as eg. fluffybunny123 or ilovecats. I want Twitter to be a platform where I share my views and put my own name to them. I’m not a big user: I read more than post. I joined before I knew I was autistic.

I think #LesbianVisibilityDay is a brilliant idea. When I came out 20 years ago, there were so few role models. I met a few lesbians, but they were so unlike me I didn’t think I could possibly be one. It took me years to fully come out and accept myself. If a selfie on Twitter can make a small difference to someone struggling with their sexuality today, then I did a good job. I was proud of myself this week.

A few years ago, there is no way I would have done something so visible around my sexuality. I’m no oil painting to look at, and I don’t claim to be representative of all lesbians. I’m just me. The question is, would I want to be so visible about autism? Would I want a picture of me out there in the public arena, for everyone to share, saying “This is what an autistic person looks like”? At the moment, no, because of the public perception that autism is a deficiency. I’ve never seen myself or other autistic people as deficient in any way, just different. I work in a professional job, and if any of my students found out I am autistic, they may not want to work with me. (I don’t mind them finding out I’m a lesbian, because if they were in any way homophobic I wouldn’t want to work with them either.) People still find it hard to believe that an autistic person can have a successful career, a long-term relationship, a house. I hope this perception will change, and I’d like to think that soon I can be strong enough to be one of those who will help bring about the change. But I’ve got a long way to go yet.