Some thoughts on “All in a Row”

Plenty has already been written on this play, currently on at the Southwark Playhouse in which a non-verbal autistic child is portrayed by a puppet. There has been an outcry against it, a protest outside the theatre and a petition with more than 10,000 signatures asking for it to be withdrawn. Yet I’d like to add my perspective, for what it’s worth.

Many in the autistic community feel that protesting against the puppet has brought the community together. Personally, I feel it has alienated me. I haven’t seen the play, and am not likely to unless it tours in the North of England. Therefore, I feel unqualified to comment on the play itself. But I am disgusted by the level of abuse railed against it, some of it quite personal towards the writer, director and actors, from people who have not seen it. Why not try to see things from their perspective? OK, the choice of an ugly grey puppet was perhaps not the smartest. But I appreciate their reasons for not using a child or a live actor – the distressing subject matter and violent scenes. The writer has worked with autistic children for 10 years, and consulted some of us in the play’s writing. I accept he may have got some things wrong. Don’t we all? As someone pointed out on Twitter, “The carers’ views are entitled to be aired as well.”

I am aware that I am coming to this as a very privileged autistic person. I have always been able to work full-time in a field of my choice and special interests. My mental health has generally been good. I now have a happy marriage, friends and a supportive and loving family. I do not have a great deal of anger towards neurotypicals, mainly because, as an adult, they usually treat me well. This was not always the case; growing up, I was called names almost daily and spent most of my childhood without a single friend. If the bullying had gone on into adulthood, if I had not been able to get through university and into employment, or if I had autistic kids who were struggling, (I don’t have kids), I admit, I may feel quite differently about All in a Row, though I doubt that I would resort to personal bullying of the play’s staff. I don’t like there being an “Us” & “Them”, autistics vs NTs, autistics vs autism parents, etc. I truly believe it doesn’t have to be this way. We should be able to meet each other halfway, and protesting, without proper dialogue on both sides, is not the way forward. I shall be glad when all this has blown over.

 

My Lovely New Blanket

Happy Post-Christmas, lovely readers!

I was lucky enough to be given a Gravity weighted blanket, something I have wanted ever since I tried one at Autscape last year. I was initially unsure how something as simple as a blanket could help with autism, and I wasn’t sure about using a so-called “disability aid” as for me personally, I don’t see my autism as currently being a huge disability.

My brochure that came with the blanket says:

“Research shows that weighted blankets reduce stress and anxiety. These blankets facilitate the release of serotonin, and at the same time help reduce cortisol levels. A weighted blanket creates a pleasant sense of security and wellbeing when placed over the body.” & is proven to help with “sleep disorders/insomnia, ADHD, stress, autism, restless legs, chemo patients, menopause, anxiety, tension, sensory integration disorders, Parkinsons, dementia.” I realised I tick several of these: restless leg syndrome which keeps me awake part of most nights, I’m pre-menopausal, and being autistic means that I probably experience higher stress, anxiety, tension and sensory disorders than many other folk, so I am their perfect customer!

My blanket weighs 6kg which is roughly 10% of my bodyweight, as recommended. It is gorgeously velvety soft, both on the inside and out, and is like snuggling up to a lifesize teddy bear. I haven’t yet used it for a full night but have laid under it for a while each evening and felt a pleasant sense of wellbeing which has extended into the night. The brochure says it can take up to 3 weeks to experience the full benefit.

There are only 2 side effects that I can foresee. One, it could be a little warm especially in summer. And two, it could make me a lot more lazy! Other than that, I couldn’t recommend it highly enough – I think many people could benefit from one even if they don’t have any of the conditions above.

 

The Power of NO!

          This week there has been a big Autistic Women and Girls conference in London. It sounded like it was brilliant – unfortunately I didn’t go, but I was struck by a quote from Sarah Hendrickx that I read on Twitter: “Autistic men often say no. Autistic women often say yes.”

        This was very much me in my 20s, before I was diagnosed. I have alexithymia and often have no idea how I feel in the moment. So, the best course of action for me was “I don’t know how I feel about this. Someone else wants me to do something. So, I can at least please them and say yes.” I am probably not the only autistic person who has used logical reasoning like this to navigate our way through a confusing situation. This has huge potential implications for our safety and means that we are likely to be very vulnerable and taken advantage of. Luckily I didn’t get too many offers of sex and relationships, or who knows where I would have ended up.

          Now, I still often don’t know how I feel, but I thankfully I am much more able to say No. Now with knowledge I have of myself and autism, I have a much better understanding of  my capabilities, my strengths, my weaknesses, my limitations.

        It’s hard when these conflict with our special interests. This month my favourite singer, who I travel all over to see at gigs,  is curating and performing at a big innovative music festival. Saying No to that has been a heartbreaking decision for me. Music festivals are the one thing I can’t do because of my autism.  The sensory overload of the noise, all the people milling round, and the expectation to be social over the course of a whole weekend are too much for me. I know, I’ve been there, and inevitably ended up in tears and wanting to leave before the 2nd day. Other types of festival, and conferences where there’s not so much noise involved, are manageable for me as long as I take breaks. But music festivals? Sorry, it’s a No from me. I know I’ll miss out on some wonderful opportunities and interactions with people, not to mention the music and several performers I’m interested in.

I am far from being a recluse. I believe in saying Yes to many opportunities. Take chances. Test the boundaries. Expand your horizons. But also, know when to say No.

“Don’t give up, don’t give up your castle of dreams

Take it all, the chances we’ve got, we don’t know what they mean”

(Heather Peace, Castle of Dreams)

 

 

 

Some thoughts on #TakeTheMaskOff

For the next 6 weeks on social media, there is a campaign to encourage autistic people to “take the mask off” and show their true autistic selves. I am very much in favour of this,and am looking forward to reading many of the posts and maybe contributing to discussions. A common view seems to be that we all mask, in order to get by in a neurotypical world. I would like to dispute this. Unlike most autistic folk, I don’t think I mask much at all.

I tried to fit in with my peers for about a year, when I first started secondary school. I went along with most of the things that so-called “normal” girls of my age were expected to do. It didn’t work. I didn’t fool anyone, either: I recall one girl saying about me when she thought I wasn’t listening, “She’s not really like a human being.” It felt so alien and uncomfortable, that by age 13 I decided it was far easier just to be myself. That meant reading or going for walks alone at break times, wearing my unique style of fashion, and flinging myself into my special interests, which were pop music, school work, piano practice and church. It was incredibly lonely, but at least I didn’t have to be someone I was not.

I grew up around non-masking. My Dad is (undiagnosed) autistic: he stims very publicly, avoids eye contact and talks mainly in monologues. It wasn’t until my teens that I realised his behaviour came across as unusual to others; to me it was normal. I realise non-masking is not possible for everyone. I guess our family has pretty low social needs; although we want to be liked and accepted, we can be very happy and productive in our own company. In my early 20s, I would sometimes go a whole week without having a conversation with anybody. Since then, I have become slightly more sociable, but on my own terms. If I find myself in a situation where I can’t be my authentic self, I will walk away, or at least go very quiet. I think this is my survival strategy, and the reason I have managed to be relatively unscathed by mental health difficulties. I feel very lucky.

One area of my life where I guess I do mask, for survival reasons, is at work, to a greater or lesser degree depending on who I’m working with. It is exhausting, and although I generally enjoy my work, it’s good to go back to being the real me at evenings and weekends. I would love to see a day when we can all “take the mask off” in every aspect of our lives, and be fully accepted for who we are.

 

Are you discriminated against at work for being autistic?

“While the law may prohibit discrimination against someone because of their sexuality, attitudes often lag far behind. A company may have a highly engaged CEO, laudable diversity policies and a few pages on its website showing a happy, smiley, rainbow workforce, but that doesn’t stop the daily sly comments from workmates and line managers, the micro-aggressions, the not-actually-funny banter or the non-materialisation of invitations to work nights out. If you can’t bring your whole self to work, then you can’t do your job properly.” Linda Riley in The Guardian Pride Power List, 7/7/2018.

I am a huge, huge fan of Linda Riley’s work on diversity and inclusion within the LGBT community, but what has this got to do with autism?  Substitute “disability” or “difference” for sexuality in the above quote. I imagine that there is far more subtle discrimination going on here.

I’m fortunate in that I mostly work for myself and have done for my whole career, but Linda’s article struck a chord with me. I am employed for 2 days a week in a school, I have been there 15 years now. I have been fairly open about my sexuality there, but not about my autism. When I started, I felt a part of the workforce. I was invited on staff nights out, I was respected and treated as an equal. Over time, inevitably many of the older staff have left and younger ones have taken their place. Now I rarely find out about staff nights out until after the event (not that I would want to attend many anyway as they have become increasingly loud, late and alcohol-fuelled.) Several of the newer staff give me snide looks, and I have to make a huge effort to be included in conversations. Nobody there regards me as “one of them.” While people are mainly polite to my face, I’m fairly sure they say negative things about me behind my back. I’m used to this from my schooldays, and it doesn’t bother me unduly as we have very little in common and I am only there part-time, but it does make me more determined to speak up and call out workforce bullying and discrimination of any kind, whether it be sexist, racist, homophobic or otherwise. We are better than this and do not have to stand for it. If workforces want to gain the best from their employees, they need to accept and positively welcome diversity, ALL types of diversity.

What does it mean to be non-binary?

Non-binary. Gender neutral. Genderqueer. Gender fluid. These are just some of the terms used to describe variations in gender identity that have become trendy over the past few years as we have come to realise there could be more than two genders. As soon as I learnt the term non-binary, I’ve realised that term comes closest to where I fit. I’m not neutral: I have a biological gender, female, which I’m fairly comfortable with. I’m not fluid, I don’t oscillate between feeling masculine one day and feminine the next. And I’m not “confused,” I’m not disputing that I’m biologically female. On official forms, given only two choices, I tick female (although I’d prefer a third option). When out and about I have no problem using ladies’ loos, although I ‘d like to see more toilets becoming gender-neutral to make life easier for my trans sisters and brothers. I haven’t yet told many people that I’m NB, and it hasn’t yet caused problems for me, maybe because I’ve been so quiet about it.

In childhood, I was far from a tomboy. I didn’t play with boys, I avoided rough-and-tumble games, I hated sports and sci-fi. I enjoyed music, reading, ballet lessons and Brownies. But I wasn’t a typical girl either, and this became more apparent in my teenage years. I was interested in fashion and make-up, but not in the way the other girls were. I wanted to be different, to look outrageous. I would wear a long green tasselled skirt one day, a baseball jacket and ripped bleached jeans the next, all acquired from jumble sales. I was ostracised by most of my peers: part of me hurt deeply, but another part didn’t care at all. I didn’t try to fit in and I wouldn’t compromise. For many cis-women, that ostracisation would perhaps have had a huge impact on their mental health – for me, luckily it didn’t.

I am not trans (although sometimes NB people are classified under the wider trans umbrella.) I like my body as it is, and have no desire to change any part of it. Now, my dress sense is pretty neutral: always trousers, classic shirts for work, skinny jeans, hoodies and T-shirts for down-time. Sometimes I’ll wear a top with a feminine cut. Shoes are always flat: brogues, ankle boots or trainers. I wear necklaces and earrings. My make-up is limited to black eyeliner on occasions, but usually none. I would never ever wear a dress or skirt unless I’m playing a character on stage. Having said all that, I think very little about my appearance. Getting ready takes 15 mins max. I don’t understand female obsessions with clothes and weight. Nor do I understand the sort of cliques and gossip that many women engage in. That has never been my style.

I have always believed that my thought processes tend towards the “masculine”, i.e. logical and rational as opposed to emotional. I know these things are all socially constructed. But I don’t want to change my pronouns – she/her will do just fine for me, although I have no problem with others choosing their pronouns.

How do I know, then, that I’m non-binary? There are many ways to be a woman. I know without a doubt that I’m gay: I’ve had sex with men and women, with men I can take or leave it but women blow my socks off.  It is common in many autistic people that they feel they sit somewhere between genders. I was asked the other day “do you think that you identify as non-binary just because you don’t relate to most women?” Good question. Maybe it’s just my autism and my sexuality. Maybe one day I will do a brain scan that will prove I’m between genders. But for now, it’s in my head. And who can argue with what’s in a person’s head? I would not dream of arguing with anyone else’s gender identity, or belittling them because of it.

My wife also identifies as non-binary. She had top surgery several years ago, for health reasons, and is often mistaken for a man. She has influenced me a lot in my perceptions of gender.

I am just one NB person. There are many, many different ways to express an NB identity. pleased that society has opened up the possibility of more than two genders and so many more ways to express ourselves. I find it all fascinating and liberating. NB identities and theories are still in their infancy, and I believe over the next few years we will see a gradual change in societal acceptance, just as we have with LGBT issues. I feel like I’m at the start of a revolution – it’s all pretty exciting!!!

 

 

Change of name to my blog!

Announcement:aspergirlsanon is no more! Here’s introducing……..drum roll please………AutieFortyAndFAB!

Why the change, you ask? Two reasons. Firstly, as the news has come out that Hans Asperger was a Nazi sympathiser, I no longer wish to be identified with him. Asperger’s has been outdated term in autism diagnosis for a few years now, even though my psychiatrist used it when she diagnosed me in 2016 and many still use it in conversation.

Secondly, the more I have read about autism in women, the more I feel I am not like most autistic women, and I have become stronger in my belief that my gender identity sits somewhere between male and female. AFAB stands for Assigned Female At Birth. I’m pretty comfortable with my female body and biological gender, but psychologically I don’t fit gender norms, I hope to explore this more in my new blog. The Forty part….I do like a nice rhyme (my wife says I should have put “naughty” in there as well!) I’m actually a few years over 40 but we’ll ignore that! I hope to write about ageing too, as I approach menopause. So, readers, thanks for staying with me and please welcome the birth of AutieFortyAndFAB!

 

#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

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?!