#AutismIs

As the hashtag #AutismIs has been trending this week on Twitter for Autism Awareness month, allowing autistic people to speak for ourselves instead of others claiming to speak for us, I thought I’d add a few of my own ideas here.

#AutismIs so many different things to different people
A normal variant of the human psyche
Endlessly fascinating

#AutismIs having to leave social events early because of overload, or enduring them in a shutdown state
Hearing every background sound turned up loud and smelling every smell like I’m eating it
Like watching 20 TV screens all at once

#AutismIs having passions & interests that bring so much joy
Being super-focussed and attending to details
Being a unique individual

#AutismIs learning coping strategies to deal with a world not built for us
Making compromises and meeting others halfway

#AutismIs thinking of something to say, hours after the moment has passed
Feeling detached from my body
Not always recognising my emotions, or recognising them days later

#AutismIs both a blessing and a curse
Far more common than you think
Exhausting, overwhelming, confusing and at times lonely

#AutismIs being a perpetual outsider
Only feeling authentic when I’m alone/with just my wife
Some people avoiding or being funny with me because I communicate differently or sometimes not at all

#AutismIs time stretched like elastic, each day feeling like a LOOOONG time from getting up to bedtime, cos of living life in high definition

#AutismIs not always getting jokes, or laughing at what others find funny
But that doesn’t mean I have no sense of humour

#AutismIs being my own superhero
Pushing myself out of my comfort zone daily, to prove that I can
Busting myths and stereotypes

#AutismIs much better after diagnosis, & when you can learn to know yourself & work to your strengths

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It’s nearly Autism Awareness Month, and I will NOT be Hiding!

I’ve seen so many comments on social media from autistic adults saying they’re going into “hiding” during Autism Awareness Month in April. Their reasons? They say it has been hijacked by “autism warrior parents” and organisations such as Autism Speaks who advocate behavioural therapy and so-called cures. Don’t get me wrong, I am totally opposed to the methods of such organisations, and any parent who does not accept their autistic child for who they are and wants to try to change them. But I’m tired of all this in-fighting within the autistic community. Maybe I’m being idealistic, but I do think it’s possible for us to work together to raise awareness of autism within the wider society. If we (autistic adults) all hide, surely that is counter-productive?

The autism parents I know are all lovely. Last year I joined a theatre group comprising 50:50 autistic and NT members, a charity-run group whose aim is to produce theatrical pieces raising awareness of autism and other related issues. A number of the NTs are in the group because they have autistic children and/or have taught in special-needs education. We all get on brilliantly, there is no “us” and “them” and mutual respect on both sides. We are a group of just 25 people, but proof that it can work!

I will definitely not be hiding in April. As well as attending the theatre group, working towards our next production in the summer,  I am taking part in a talk “Autistic and Awesome” in London run by Public Sector Neurodiversity, where along with other autistic speakers I will describe my work in the public sector and how my autism has affected my career. I also came out recently in a national magazine in an article primarily about my work, in which my Aspergers was relevant. I am prepared to stand up and be counted, but I am not prepared to engage in needless battles with different factions. At the end of the day, surely we all want the same thing?

 

Reflecting on my Past

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.

       Unfortunately, Whose World fell apart after 3 or 4 years, due to political differences and no one willing to take leadership roles. But I look back with fondness on those days,  and especially I’d like to celebrate B, C, M and BJ – their gentleness, their quiet individualities, their willingness to embrace their feminine sides. I’ve lost touch with them now, but they undoubtedly made me into the person I am today. And I secretly wonder, did any of them ever get an autism diagnosis later in life like myself? Probably not, being of the generation that they are, but who knows?!

Finding my Tribe – it’s not happened yet!

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 was a very solitary child. From the day I started school until I left at 18, I spent 90% of break times absolutely alone. In the holidays, I often didn’t interact with other children apart from my sister. Not unusual, maybe, for an autistic male, but pretty rare for a female, who will usually try to fit in with her peers. When I started secondary school, I spent a year trying hard to fit in. It didn’t work. I was too different from the others around me and preferred thinking, writing, reading, music practice over games and chat with my peers.
Despite this, I’ve always been a joiner of organised group activities around my special interests.  In childhood it was Brownies, Guides, ballet, drama, church activity holidays. At uni it was choirs and Christian groups. Nobody forced me to do these, I went  willingly, and for the most part enjoyed them. As an adult, I’ve been in various music and drama groups, and currently an autistic theatre group. I’ve always been more interested in the activities than the social side. I’ve joined in some social activities and avoided others. I’ve always tried to be kind and polite and get along with the other group members, but have never cared a great deal what they think of me.
I’ve never been much of a worrier. Travel to new places, new situations, meeting new people, doesn’t phase me at all. If it does, I just see it as a challenge to be overcome, like climbing a mountain. I get anxious if I find myself in a stressful situation, but I don’t dwell on it before or afterwards.
I have had pretty good mental health so far in my adult life. I put this down to my very autism-friendly upbringing. In my family, everyone was made to feel 100% valuable and loved. Special interests were encouraged, it was OK to talk for hours or to say very little, and stimming was not discouraged. So despite being called names and ostracised at school all through my teens, I turned out pretty OK. I’m aware most autistic folk aren’t so lucky.
So, I’m still waiting to find folk who I can REALLY relate to. My wife comes closest, we have a brilliant marriage and she understands me amazingly but she’s not autistic, and actually none of the above points apply to her either. If you’re reading this and can relate, do get in touch!

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.

Doing Christmas – the Aspie Way

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.