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!
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!
- Pretty much all autistic people love cats. For once I’m with the majority on this one.
- 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.
- 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.
- 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.
- 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.
- 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?
- 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.
- 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.
- 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! 🙂
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!
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!
“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.