It’s interesting looking back on my life and re-framing my experiences since my diagnosis. In the early 90s, when I was at uni, I joined a radical political group called “Whose World?”. I heard about the group through a vegetarian dating magazine that I joined (I’d never had a partner and didn’t even know my sexuality at that time.) B, one of the chaps whose ad I replied to, encouraged me to join the group, linked by a fanzine-style monthly newsletter printed using minimal resources. Articles in the newsletter were mostly about veganism, environmentalism and living simply. I was instantly drawn to this philosophy and it had a huge influence on me. Twice a year the group had meet-ups in housing co-ops, I went to a few of them. I met some amazing people through Whose World, and it was a refreshing break from the stuffiness of uni. Most of the people there were the type the general public would describe as hippies, crusties, society dropouts and dole scroungers. The average age was a good 10 years older than me. I’d like to celebrate 4 people in particular, all male, who had a massive influence on me at the time, and looking back it was because they were probably all autistic. There was B himself, an incredibly shy guy whose special interest was bicycles and he rarely talked about anything else. Then there was C, even shyer, who was so self-deprecating, always doing himself down, but a real sweetie underneath. I never got to know him well unfortunately, as he didn’t talk a lot, but I did spend a few days in his student house-share once, happy memories. And M, who became my travel companion for a 2-month trip to India. We both wanted to go there so badly, we’d just finished uni and wanted Experiences with a capital E. It was an amazing trip, but as with C, he didn’t say much so I never really got to know him any better, and we soon lost touch on our return. And finally BJ, a chap in his 40s who basically hadn’t changed since the 1970s – same long hair and beard, same music, same house that was now falling down. I thought BJ was super-cool. After India and teacher training college, I was in a 3-year relationship with him, before realising I was gay. Looking back, it was a very autistic relationship; we saw each other fortnightly, always to do the same things, and hardly ever phoned each other in the times between. We we good for each other I think, and we absolutely accepted each others’ quirks.
It’s been nearly 2 years since my diagnosis now, and in that time I’ve interacted with many wonderful autistic people, online and IRL, who have helped me a lot and I’m very grateful. But I’ve not met anyone with whom i have a lot in common. I know we are all unique individuals, but I really am a lot different from even most other autistic people. I’ve been thinking why this might be:
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?”
“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?”
“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.
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.
Christmas is a stressful time for many. So many expectations to conform to. So many traditions to uphold. Feeling that we SHOULD do it the way society tells us. We should have a picture-postcard, Instagram-perfect festive season, complete with sparkling tree, flashing fairy lights, mountains of presents and excess food and alcohol. We should have wall-to-wall TV: movies, box sets, Christmas bumper specials. We should invite all the extended family and neighbours round in one great social whirlwind. If we do these things, and only if we do, so we are led to believe, we will have a happy festive season. Infinite love and peace and goodwill will be extended to us.
We could, on the other hand, be like Scrooge. Why is the story of A Christmas Carol so popular? Because Scrooge at the start of the story is the antithesis of everything we are supposed to be at Christmas. We could give no presents, invite no one round, wish no one a happy Christmas, complain that it is all a commercial deception. We could even carry on our regular work, pretending it is just a day like any other. Was Scrooge autistic? Maybe he was, not that that’s an excuse for his behaviour at the beginning of the story. Perhaps it’s an explanation though.
I believe there is a third way, the way in which my wife and I have been celebrating Christmas for years. We have a very quiet, modest celebration, just the two of us. We have muted decorations, many recycled from previous years: no tree, just candles, baubles and a selection of cards we are lucky to receive. We don’t believe in the religious aspect of Christmas, but we do mark the day. In the morning, the lightest part of the day, we take a long walk through local park and woodland. We enjoy the peace of shops shut and no public transport. A flask of coffee is essential. The afternoon, as darkness begins to close in, will consist of maybe a game of Scrabble, maybe some festive choral music on CD. We will open modest presents, just a few small useful things each. We will have dinner at our usual time of 8pm: nut roast, roast veg and of course plenty of Brussels sprouts. We will have one or at the most two drinks, a glass of red wine or sherry, or a bottle of lager. We will probably not switch on the TV all day. We will read books, both quietly on our own and out loud to each other. We may take a bath with healing salts and scents.
We are lucky. We have the best gift of all, which is each other. We have enough, in fact more than enough to eat. We are relatively rich: Christmas does not bankrupt us for the next couple of months. We have leisure time, a full two weeks off work. We are able bodied and healthy, something we try not to take for granted. We are not tied down by children, we chose not to have any. We don’t avoid our extended family, but visit them on other days during the holiday season. We are not saying our way of doing Christmas is perfect, or the only way, or better than anyone else’s way, nor even achievable by many who may have commitments to family and traditions or who do not have the health and wealth that we have. I would just like everyone to be less hampered by tradition and feel free to do Christmas in their own way, whether that is alone or with a few select friends, pursuing favourite hobbies, eating what we like, using the festive season as a true time of rest and recuperation rather than the stressful circus it has become.
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!