Learning the Rules of Friendship

I’ve been thinking this week of an incident that took place when I was 7 or 8. I was on my own in the school playground as usual, pacing up and down and making up stories about my imaginary friends, when two girls from the year above came up to me.

“Oi. You girl. What’s your name? Why are you always on your own?”

I told them my name.

“We’re Lorna and Naomi.”

“I know that.” It was a special interest of mine to learn the names of all the girls in the school, a large multicultural inner London primary. I also knew from astute observation, which girls were considered cool  and who wasn’t, who was picked on by teachers, who were the ringleaders and who stood on the sidelines. Lorna and Naomi, I knew, were neither cool nor uncool, neither clever nor thick, just fairly average “nice” girls who always hung around together. We were in the “girls’ playground” which was literally on the roof, 3 floors up. The boys were on the ground floor playing football. Girls played tag, skipping, elastics, 2-balls, clapping, mums and dads, rounders, grandma’s footsteps. That is, all the girls except me.

“I don’t like the games they play. I’m no good at running, skipping or catching balls. I just get caught out all the time and they laugh and call me handicapped. Not fun at all.”

“Hey, we’ll be your friends! We don’t need to play any of those. What games do YOU like to play? How about clapping… “A sailor went to sea, chop, knee, toe………..”

“OK, I’ll  try that one.” They taught me how to clap up, clap down, clap together, clap under my knee in sequence. I could do it, slowly at first. Then the bell rang for in-time.

“Cool! You can be our new best friend. See you next break, yeah?”

I thought, how lovely – rarely did anyone say that to me. So for a few days I hung out with Lorna and Naomi. For once I had some actual real-life friends, or so I thought. They were in the year above, too – super cool.

I don’t know whose idea it was to play “Tell her what to do, and she does it.” Lorna’s probably, she was the one with ideas. They must have latched on pretty quickly that I was quite vulnerable and easily exploited.

“Stick your finger up your bum and then lick it. Go on, I dare you.”

So I did. I thought one of the rules of friendship was, you did what you were told. It was pleasing for your friends, to have their wishes granted. What I was being asked to do wasn’t that difficult. They would like and respect me more for it.

“Ugh, you actually did that? OK, now see that girl Julie over there, she’s the fat one turning the end of the skipping rope. Go and tell her she’s a fat bitch. Don’t say anything else. Just say “Oi Julie, you fat ugly bitch.””

(It didn’t exactly happen like that. Actually, I’ve blocked out the details of the actual incident that landed me in the headmaster’s office. The finger-up-the-bum part of the story is 100% true, I’m ashamed to say.)

Mr C was the best headmaster ever. Kind, gentle, really caring towards every kid in the school. I liked him a lot. I was a good kid and it was my first 1:1 encounter with him for anything negative.

“So, I’ve been hearing reports from Julie that you have been calling her names. Why?”

“I dunno, sir.”

“That doesn’t sound like you at all. We need to get to the bottom of this. Has Julie been picking on you?”

“No sir.”

“So why did you do it?”

“Lorna and Naomi told me to, sir.”

“What? If Lorna and Naomi told you to go and jump off a cliff, would you do it?”

“Er…..no sir.”

“Glad to hear it. Go back out to play, say sorry to Julie and I don’t want to hear any more of this silliness.”

After that day, I went back to playing on my own and never spoke to Lorna and Naomi again. Lesson learnt: true friends don’t exploit each other for a laugh. Unfortunately, variations on this story are probably common in young autistic girls. People can see that we are easily manipulated, and take advantage of that. I’m glad I learnt this lesson young, before I got into more serious situations. I just fear for all the other girls who are different in any way, out there in school playgrounds today. I hope their lessons will be easier to learn.







“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.

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.

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! 🙂

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 🙂