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 🙂

 

 

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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.

Book Review: The State of Grace by Rachael Lucas

“The State of Grace” the new young adult fiction book by Rachael Lucas, is a terrific read.  It should be compulsory reading in every secondary school. The heroine, Grace, is pretty much your average teenager, except she has Aspergers. She draws you immediately into her world and I was hooked from the first page. In Grace’s unique way, she absolutely hits the nail on the head with descriptions such as these:

“Sometimes I feel like everyone else was handed a copy of the rules for life and mine got lost.”

“I speak human as a second language.”

“It’s like living with all your senses turned up to full volume all the time.”

“It’s like living life in a different language, so you can’t ever quite relax because even when you think you’re fluent it’s still using a different part of your brain so by the end of the day you’re exhausted.”

“It’s like there’s a game of Jenga going on in my head and I never know what’s going to make everything fall apart.”

The plot is standard teen-fic stuff: best friends, boys, parties, parents, all seen through Grace’s eyes. Things go heartbreakingly wrong in typical teenage fashion, and then are resolved. I think it will really help some teenage girls with Aspergers, and Grace’s character will really resonate with them. But only some. My teenage days are now thankfully nearly 30 years behind me, and at the time I had no idea I was autistic. I was nothing like Grace, and even if I had met a girl like Grace I don’t think we would have got on. Her main special interests are horses and Dr Who, neither of which I have ever cared for in the slightest. Autistic people are all different, and I was a very odd teenager. My interests at 15/16 were playing the piano, doing my absolute best at school, Christianity and gender-nonconforming pop stars. I didn’t have a single friend my own age. I was probably what you would now call a selective mute around people my age. I only really talked to adults I trusted, and even then not a lot. Grace in many ways is a very lucky young lady: she has a best friend, a boyfriend, a horse, and an ultra-normal, supportive family, things that many of us can only dream about in our teens. She is articulate in a way I never was.  Looking back, a lot of the areas of life that Grace struggles with, I did too, but it was never talked about and I would never have been able to put into words what I was feeling at that time.

I’m quite glad I wasn’t a teenager like Grace. I wouldn’t have enjoyed going to parties and hanging out with boys on skateboards, and I’m grateful now that I didn’t waste my teenage years in this way. I feel sorry for her mum’s friend Eve, to whom Grace is pretty rude. I don’t think her behaviour was acceptable, even if she was having a meltdown and did say sorry afterwards. Why is her mum not allowed her fun while her dad is away for work? Grace seems quite self-obsessed – maybe all teenagers are now, more so than in my day. In her favour, she does have a love of animals, a love of sameness and routine, and a great relationship with her Grandma that I could relate to.

The best part of the book for me was “Grace’s 10 Things” on the back 2 pages, things everyone should know about autistic people. I could print off that list and hand it to people I meet, it would save me a lot of explaining!

I’m going to buy the book for my 15 year old niece. She would probably be a far better reviewer of it than me, being of the right age group and horse-obsessed. Whether or not my niece has Aspergers, which is unsure at present, she certainly has a lot of the traits and I think this book will help her and many others, so thank you so much Rachael Lucas for writing it!

 

 

Which do you prefer, libraries or parties?

If any of you have done the online autism test, this is one of the main questions. Please don’t take these online tests too seriously. On that test I came out borderline, but when I went for my actual assessment I was told I “tick all the boxes.” Libraries and parties are completely different things. It’s like being asked to choose between chocolate and trampolines. The classic autistic stereotype will of course love libraries because they are quiet, predictable and full of books, and hate parties because they are loud, unpredictable and full of people. But:

Libraries

If I am deeply engaged in some work, or looking for a specific book or article that I manage to hunt down, they are great. I love the peace of libraries. But they can be overwhelming places. All those books screaming to be read. They can seem cold and inhuman. I spent a lot of time in them as a student. Too much time. After a few hours, they would give me a headache. Now, who goes to libraries anyway? It is sad they’re dying a death because of the internet. But truth be told I’m not that sad for me personally. I haven’t set foot in one for ages.

Parties

I don’t go to many. I don’t get invited, and many times I wouldn’t want to be. They can be loud environments, and I’ll often need to leave early because I can’t filter out background noise and I get overwhelmed. But I’ve been to a few with good friends and family, and really enjoyed many of them. I’ve even travelled halfway across the country to attend a specific party. I like party food and drink (in moderation). I like party music as long as it’s not too loud, I listen to chart songs on the radio at home and when a song comes on at a party that I know, I’m in my element. And – I Like People! I like the chats and the warm positivity I experience at parties, even if I don’t come away making deep connections.

So, libraries or parties? The answer is, It Depends. On a Monday morning, yes probably a library. But on a Saturday night, in the right setting and with the right people, as long as I didn’t have to stay late, A Party! I will not ever let a stereotype define me.

 

 

 

7 Reactions to my “Coming Out”

I’m only “out” about my Aspergers to a few people so far, family and close friends. Most of my coming out has been done by email. Talking about it is still very hard. The reactions have been interesting – not all what I expected. They’ve all been kind, and for the most part positive. No one has run a mile or behaved any differently towards me. I hope this post might help other readers who are thinking of disclosing but unsure whether to do it. Here’s what people have been saying:

  1. Mum: “You’re not really autistic are you? I mean, you’re not very autistic.” What she means is, I mask well now mostly. In my childhood I was screamingly obvious. But it was the ’70s and I was a girl. I think she’s in denial because she feels guilty for not having spotted it sooner. It’s not her fault. It’s thanks to Mum filling in the questionnaire about my childhood that I got my diagnosis last year. She is overall very supportive.
  2. Dad: “I’m fairly Aspergers myself.” Well, yes. A comment by my stepmother about Dad being on the spectrum, was one of the reasons I looked into getting a diagnosis for myself. Dad never would – he’s 73 now and it wouldn’t change anything. But he obviously is and that’s where I get it from. Dad & I don’t always agree, but we’ve always had an understanding, because our brains are wired in similar ways. He’s supportive.
  3. Sister: “I’m not surprised.” She knows me better than most people. It doesn’t really bother her. We get on well, I’m still me and that’s all that matters.
  4. Good friend who has worked with autistic kids: “Do you still want me to hug you when we say hello and goodbye?” Yes. I don’t suffer greatly from touch sensitivity. But thanks for asking, I do appreciate being asked.
  5. Partner’s friend: “You’re the 7th person I know with autism.” So, I’m kinda normal then, that’s cool. And 7 is a lucky number.
  6. Friend I’ve not known long: “I’m very sorry.” She doesn’t know me well yet, and I know she means to be kind. But I’m not sorry. Autism is not good or bad, it just is. (See my previous blog post about this friend’s comments.)
  7. Partner’s relative: “Really? I’d never have guessed.” He means to be kind, and I’m pleased that I mask well, but autism is not something you can see. This is where we need to educate people. So much work still to be done!

I haven’t yet had the classic response “Well, we’re all a little bit autistic” yet, I’m waiting for that one! I have an answer ready: just because we all occasionally mis-spell a word does that mean we’re all a little bit dyslexic? Again, people mean to be kind but education needs to be done.

I’m hoping to come out more widely this year. It’s not easy. It’s a gradual process. There’s always a chance it could backfire, and once I’m “out” I’ll never be able to go “in” again. I have a dream of one day becoming an autism speaker, so I’ll keep working on it!

 

Book Review: Odd Girl Out by Laura James

I was extremely excited when I heard I had been given the opportunity to review Laura James’ new book “Odd Girl Out: An Autistic Woman in a Neurotypical World” . Like me, Laura is in her 40s and recently-diagnosed Aspergers. I had come across her on social media. Her book did not disappoint; I’d say it’s essential reading for all autistic women especially those of us who lived a lot of our lives in the shadows before we were able to explain our differences. It’s a positive, upbeat book while at the same time Laura is not afraid to delve into deeper, darker realms. I love her style, her quirkiness and brutal honesty. From the first page she draws the reader into her confidence and I felt I’d made a friend. Her combination of the emotional journey she has undertaken in the last year interspersed with flashbacks to earlier times in her life, works well and is similar to the journey I’ve been on in the year since my diagnosis.
From page one, I could relate to several stark sentences. “A sense of unease, as if something is going to happen, like the rumble on a track that speaks of a train about to whizz by.” “I can’t name my feelings.” “The world is an alien place to me.” These are, I think, common to many autistic people.
However, as the book progressed, interestingly I found myself identifying more with her husband Tim. Laura keeps saying that he is neurotypical, but I wonder. Many of us are drawn to neurodiverse partners who maybe complement our shortcomings. Laura admits to living with an all-pervading fear of the future. I don’t. Like Tim, I let life happen around me. Tim is an optimist who can only exist in the present, I would say the same for myself. He is good at prioritising and taking care of himself. I have never had a problem with these. He can sum up his feelings in 2 words: eg. excited and sad. When I can put names to my feelings, these are the kind of simple words I would choose too. Tim is a musician and a songwriter like me – I imagine I’d get on very well with the guy.
That said, I found Laura’s descriptions of her life intriguing and fascinating. I particularly enjoyed the flashback to her primary years, which I could relate to very much: “I would create imaginary worlds in my head and would sit still for hours coming up with the rules for this parallel universe.” (My own early years were dominated by imaginary “friends” who were my only companions in the school playground.) “I don’t enjoy playtimes because I don’t know what to do. Some of the girls play games, like one of them being the mummy and the others being the children. I don’t want to do this. I tell them I think it’s boring because it is.” “I want to stay in my classroom and not go and play in the playground but that is not allowed.” I love the way Laura’s style in this chapter is written how a child would actually think. Like her, I often couldn’t understand the rules other children lived by. “Everyone at school lies, but when I tell them they are lying I am the one who gets into trouble. It’s not fair” Absolutely. (Although unlike Laura, being a generally greedy child I was a fan of school dinners!) I didn’t relate so much to the description of Laura’s teenage years: I had by this time realised I was odd, and drinking and smoking with my peers was not something I engaged in, ever.
Throughout the book, Laura consults people who are at the top of the field in autistic writing and activism. (I’m very envious of the fact she is on first-name terms with Tony Attwood, Steve Silberman, Sarah Hendrickx, and Sarah Wild the head of Limpsfield Grange School.) Their insights into Laura’s life and the way she intersperses them into the book are touches of genius. They suggest ways for Laura to manage and to work with her strengths, in a way that’s very positive.
The feelings Laura had in the months after her diagnosis particularly resonate with me. She describes a lone goose flying in the middle of a skein: “Before my diagnosis, I had spent all my life waiting. Waiting to find out what was wrong with me. Waiting to fit in. Waiting for my life to begin. Waiting to find the proper me. Now, a year on, I realise I have been waiting for nothing and, like the middle goose, I will probably never fit in.” The end of the book is hugely positive. Like Laura and Tim, my relationship with my other half improved greatly once we knew about my autism. “We are being kinder to each other. We have become more understanding of each other’s faults and we celebrate each other’s talents more.” Couldn’t have put it better myself. I am pleased for Laura that she has grown in self-acceptance: “there are huge advantages to being autistic- the quickness of my mind, my ability to take in new information, my intelligence, the passion I feel for causes I believe in, my inability to take offence.” Yes, yes and double yes. I hope anyone who reads this who is unsure about pursuing diagnosis will go for it. Like many readers, I am still on my journey, as Laura says the diagnosis is just the beginning.
Finally I would just like to say a big Thank You to Laura for sharing her story in order to help me and so many others. Bravo!

Autistic – or just “Shy”?

Once there was a little girl, afraid to say her name
She lived behind a self-made mask of silence and shame
She played all by herself, wrote stories in her head
And she dreamed of the day when those stories would be read
(From my song “The Real Me” 2014)

The most common adjective used to describe me a a child was “shy.” When I was growing up in the 70s and 80s, it was thought that autism didn’t exist in girls, or only in its more extreme forms. Aspergers was not a word in common use. If I had had a pound for every time someone had looked at me and said “She’s a shy one” I’d have been very rich. Undoubtedly I was introverted, wary, uncomfortable around people. I was a late talker, and once I’d learnt to do it, I didn’t do it a lot. I would answer direct factual questions quite readily, provided that I knew the correct answer, so no one imagined there was anything other than shyness going on. (The song above isn’t quite true; my name was information I’d have happily given.) But there were days when other than answering questions, I probably said little else. Talking was hard work. Writing was always so much easier – I learnt to read and write soon after I could talk, and was way ahead of my peers in my written work.
But I was always keen to perform in front of others, in fact I loved it. A truly “shy” child wouldn’t have stood up in front of 300 people, alone, age 9, and sing a song she’d written. She wouldn’t have joined the church am-dram group or dancing classes, or sat down and played piano in front of the whole school. As long as it was rehearsed, I was fine. Yes I got nervous, and the reception wasn’t always what I’d intended. I was frequently laughed at for being awkward, unusual, just the odd one out.
I grew up believing I was “shy” because I’d been told it so many times. I hated the word and worked hard not to let it define me. Now, I am far more verbal. Years later than my peers, I managed to master the art of conversation, although it still does not come easily. At times now, I amaze myself at how neurotypical I can sound.
“Shy” children are usually the deepest ones. If I encounter a child who has little to say, I know there’s probably a lot more going on in their minds than those who chatter all the time. A few of these children will be autistic like me. I regret not being more verbally confident as a young person, but I don’t regret taking time to listen, think, learn and take it all in. Now I know there was a lot more to me than shyness.