‘Lost’ Girls.

pexels-photo-1030982
Photo by Daria Shevtsova on Pexels.com

Are male and female brains innately different, or is this ‘neurosexism?’

It seems that half the internet believes men are from Mars, women are from Venus, and the other half believes our differences are learned-expectations from our gendered culture. Both sides seem believable; both sides are researched and written about by creditable scientists and psychologists. Personally, I believe male brains are inherently different to female brains, but that’s just my instinct.

What puzzles me is, if our brains are ‘wired’-differently from birth, why is the diagnostic criteria for brain disorders the same for men as for women?

It is well known that approximately four times as many men and boys have a diagnosis of Autism than women and girls. Psychiatrists Leo Kanner and Hans Asperger, (famous for their work related to Autism in the 1940’s,) based most of their research and studies on young boys, and their deficits in social interaction, social communication and social imagination.

Since then, the definition of Autism has broadened and there is more understanding. But still the procedure for assessing Autism Spectrum Disorder is based on findings from the study of boys.

If our brains are ‘wired’-differently from birth, why is the diagnostic criteria for any brain disorder, the same for men as for women?

***

There are many reasons why Autism is under-diagnosed in females, aside from the assessment being geared toward the ‘male brain.’

I believe my diagnosis was so late because I am average-bright, quiet, eager-to-please, self-conscious, have clinically-diagnosed mental health difficulties and, from pre-school, developed the art of mimicry in order to hide any differences I had from my girl-peers. When I was growing up, nobody knew about Autism, nobody considered it. People thought ‘high-functioning’ Autism affected super-sonically clever, anti-social boys who were obsessed with trains or Lego, and that they would grow-out-of-it before adulthood.

That is why people call us the ‘lost girls.’

***

Everyone bundles out to the playground like they love it. Most of the boys play football or bumper cars for the whole time, but the girls flit from one-thing-to-the-next without a thought. One minute they are sitting in circles “chatting”, whilst doing each other’s hair, next they break off into pairs, holding hands and doing clapping games, or chasing boys, or whispering behind the bins, or playing ‘mums and dads’ with dolls. I have learned to “play” near them and look busy. If I make it look like my hopscotch is exciting, maybe they will see me “playing” and want to join in. I cannot ask to join their games because I don’t know how to ask, and I don’t know the rules, and girl-pastimes all seem to be based around verbal-communication and touching. I won’t sit on my own like the awkward-boy in the next class, because the teachers try and help him join-in, and I don’t want that pressure.

I hated feeling different, but my six-year-old self coped well in public because I wanted approval.

I could just about fit-in by subconsciously copying, I thought that was ‘normal.’

I trained myself how to speak ‘girl’ and I trained myself to always behave in a way that was socially acceptable, based on my observations and the direction of adults. But I was most content on-my-own, where I could have control, observe, and think deeply about things. I did not want to look lonely, but I was happiest doing a repetitive activity like organising, tidying, skipping, cartwheels, or daisy-chains, whilst tapping into an imaginary world in my head, and everything there was far too precise and intricate to be shared.

It protected me from the chaos and confusion of the ‘real’ world.

In class, I learned to blend-in, the way a chameleon camouflages with the colours of its environment. My mum was the only person who would see the extent of my built-up, sensory overload and mental exhaustion from the day. To her, I was Jekyll and Hyde; to my teachers, for the whole of my education, I was just a conscientious girl; to myself, I was false, different and less.

***

I am in Junior school but my infant teacher, Mrs Blott, said I can still write her stories. I have been in trouble a lot lately when misreading social cues, but I have discovered music. I am good at it, I know it, but I don’t know why. I can read music but it’s like I don’t have to, my psychic fingers just know what to do by magic. I am addicted to it. I am addicted to reading Charlotte Bronte and Frances Hodgson Burnett, over and over. I listen to the same song, the same audiobook. These things are accidental comforts, obsessions. I fell-out with a girl called Lucy because she said you don’t spell the word ballet with a ‘t’ but I know that you do, because I actually do ballet every Tuesday. Our mums organised that I would go to Lucy’s house for tea and to “play,” and my screams got-out and got-me-into-trouble: I have never been so scared in my life.

Autism in girls differs slightly to Autism in boys, which is why some of us get missed.

Girls cover-up their deficiencies in social communication, participation and imagination by mimicking other girls because they want to ‘connect’ despite Autism. Even neuro-typical girls have to do this occasionally, because of the social-pressure girls put themselves under. It is called masking, a suppression of the authentic autistic state. It is exhausting and commonly causes burnout and prolonged mental health issues. Many autistic girls are misdiagnosed with bipolar, anorexia and personality disorders before their Autism is discovered. Some girls might never be diagnosed with Autism, because they function confidently within their means, so it only effects their lives positively.

A diagnosis is not essential for everyone.

Girls that receive a late diagnosis of Autism, like me, often do so following a mental-breakdown of some kind, which is why I am compelled to raise awareness about it. Many girls are diagnosed in their 30’s, whilst boys are often diagnosed under the age of eight.

***

I am in secondary school and it is all girls. At break times I find myself wandering around the school; the same circuit, every time. The hall is too noisy, and filled with circles-of-girls chattering, eating comparing, competing, the cafeteria is too packed. The library is tempting. I really like just wandering. It gives me a bit of time to digest the previous lesson, visualise the next. I crave these solitary moments: I can count the stairs, the bricks, and the lockers I walk past. I am not unhappy, but safe: people know that I am good at gymnastics and that is enough. I need this alone time to get through the day, and people don’t notice that I am alone when I am wandering, they think I am actually going somewhere.

I am not so good at ‘chat,’ I think that’s why I love my cat.

I have always masked my autistic differences to fit in with other girls and this has had a detrimental effect on me, but it also allowed me to get a degree, and work as a teacher for ten years. I am exhausted. I am rather more like a cat than a girl: I am calm, cautious, curious, observant, independent-to-a-fault; I like my own company; I think in real images; my main emotions are fear and affection; I have heightened senses and I am a creature of habit. I need cat-naps but I never get them. I battle compulsions to stim, repeat, touch, lick, play, imitate, press my face against the freezers in a supermarket or lay face down on the floor on a train and scream to regulate the sensory-chaos.

Despite my diagnosis, I am still trying to live like I don’t have Autism, which means I have phases of success, followed by phases of burnt-out-isolation.

Writing helps me be more open about who I am. “It is a solitary [hobby], for introverts that want to tell you a story, but don’t want to make eye-contact while doing it.”

 

 

 

 

What On Earth is Autism?

woman looking at sunset
Photo by Pixabay on Pexels.com

First, I will tell you what it isn’t.

Autism isn’t a learning disability. However, it is common for autistic people to have additional learning disabilities. It is also common for autistic people to develop ‘co-morbid conditions’ such as epilepsy, dyspraxia, mental health differences, social anxiety and gastrointestinal problems.

But these ‘co-morbid conditions’ are not part of Autism.

The National Autistic Society tells us that Autism is “a lifelong, neuro-developmental disorder that affects how a person communicates with, and relates to, other people, and how they experience the world around them.”

It is a spectrum. But the spectrum is not a straight line that goes from mild to severe… and not everyone is on the spectrum.  

I have imagined the spectrum as being a constellation of stars, interlinking, inside an autistic brain. All autistic people have the same stars shining at different levels of luminosity. This might mean that parts of some people’s Autism are more hidden than others, especially if they are girls or diagnosed-late. This is because they may have learned to mask it.

Parts of some people’s Autism are quieter and calmer than others.

Some of their stars are less vivid.

Does this make their Autism less severe?

Of course not. It might make that part of their Autism less severe. Alternatively, their Autism might be affecting them mentally, which you can’t see, but their whole Autism is incomparable to another.

***

Dr. Stephen Shore famously said: If you’ve met one person with Autism, you’ve met one person with Autism. Just because you know a person with Autism, does not mean you know Autism. Just because you can see somebody’s Autism, does not make it wholly worse. Everyone with a diagnosis of Autism is different.

I am trying to find out about my own Autism by writing, and I’m pretty sure it presents itself differently every day.

***

My Autism assessment is twelve A4 pages long and you need a degree in psychology to understand it. It tells me that I present with Autism Spectrum Disorder (ASD.) It would have previously been called Asperger’s Syndrome, or ‘high-functioning’ Autism, under old diagnostic criteria. I am sometimes ‘high-functioning,’ sometimes ‘low-functioning.’ Sometimes, I am not functioning at all, so this old ‘label’ seems imprecise and misleading.

The test results tell me that I display “functional limitations in social communication, social participation and social relationships.” It tells me that “the impacts of my difficulties with social-emotional engagement are significant.” It tells me that I have “clear difficulties in relation to: engaging in “unusual behaviours;” communicating verbally with adults and groups of adults; tolerating changes and sensory stimulation. I have “highly restricted, fixated interests that are abnormal in intensity; extreme distress at small changes; difficulties with transitions; hypo-reactivity to sensory input; apparent indifference to pain/temperature; repetitive motor movements and abnormalities in eye-contact and body language.”

It was a relief to be diagnosed with something, after thirty-years of hidden-depression, apologetic-despair and suicidal ideation for not knowing why I am the way I am. A diagnosis doesn’t change anything, but it gives you tools to make sense of the life that is yours, instead of wanting to end it.

Over the past ten months, I have broken-down the broad terminology, and learned ten facts about myself, by myself, that make me understand myself in a kindlier way.

Here they are: ten things I want you to know, but would never say

  • I have lived my whole-life not knowing my own feelings. I can now identify and accept a scale of feelings that I have connected to numbers in my head, but I have learned that I am not sure when I feel tired, which explains why I never-know-when-to-stop.

 

  • Despite traumas I have experienced over the past ten-years, I did not grieve. The combination of shock and Autism transformed me into a mechanical-robot, that hyper-focussed on ‘normal’ rituals and routines, in order to escape-emotion. This made me ill because I am actually-a-human, so I am working on everything constructively now.

 

  • My brain does not filter-out ‘irrelevant’ senses, such as background noise, the feel of clothes on my skin, or people moving around. This means I have to process everything at once which is harder when it is really noisy. My sensory assessment revealed ‘clinical concern for sensory overload.’ When overload happens I am hot, sick and sad and it makes me humiliated.

 

  • I have physical stimming behaviours that are sub-conscious. Autistic stims are more obvious and less socially-acceptable than ‘normal’ habits. I do my best to suppress my stims in public, if I am aware, because I have learned that it is “a bit weird.” This puts me under a lot of pressure and explains why my body aches, but I feel ashamed about accidental-stimming in social situations.

 

  • I can make eye-contact but I do not like it. It is difficult for me to concentrate on what someone is saying if I have to look-them-in-the-eye, (unless I know them really well.)

 

  • When people talk to me unexpectedly, I panic. This is because I do not understand the rules of ‘small-talk:’ I am very literal and matter-of-fact; I plan interactions in-advance and predict each possible outcome; I over-think; I am introverted; I worry that I will say something insensitive or weird without knowing; it sometimes takes me a while to process information.

 

  • I have realised some good things too: I have a great memory. I love analysing data, numbers, intricate-details, patterns, lists, facts, song lyrics, solving-problems, links, words, creativity and finding answers. I am very reliable and thorough. I can lie but I can’t live with myself when I do, so I always confess. I do things quicker and better than people expect them to be done, and I am highly intuitive to others’ feelings.

 

  • I imitate girls-my-age so I know how to behave in new situations. It’s a bit like being a chameleon or a copy-cat, and I am seriously good at it. Sometimes, I repeat what people say when I don’t know what to say, to avoid an awkward silence. I realise that I am not often friends with girls-my-age because I feel very different to them, and it highlights my deficits. I have learned to ‘mask’ my Autism because I want to fit-in, but still there is a barrier between me and other girls. It is so hard when your condition is invisible.

 

  • I am constantly preoccupied with ‘right’ and ‘wrong,’ ‘good’ and ‘bad.’ It never goes away.  I think this is why I am fascinated by religion and have an obsession with crime and the police. I think it is also why I find Facebook and the News so-completely confusing and anxiety-inducing.

 

  • It is impossible for me to deal with a change of plan. For this reason, it is hard for me to socialise with more than one or two people at a time. The more people there are, the more complicated things become. Sudden, unexpected changes force me into either ‘meltdown’ or ‘shutdown’, and the side-effects remain with me for a couple of days.

 

Those ten things have been true for me throughout my whole life, but I have only just realised them in the past ten months.

Now things are making sense.

Since my diagnosis I have used writing to try and figure-things-out and it is working. I am slowly accepting it, slowly owning it, and slowly sharing it with others.

Maybe those ten things will help someone else make sense of their life too.

 

My Song Is Gone

All of my life, I’ve been singing

From birth until thirty-years-young

A lyric for all situations

A tune on the ‘tip of my tongue’

I sang in the choir as a school-girl

And at church at the ‘top of my lungs’

Never a moment of silence

Just a girl with a heart full of songs

I sang because music inspired me

I sang through the good times and hard

When I sang it was always uplifting

In the bath, down the pub, in the car.

One day, the dark overwhelmed me

All black, like the octopus-witch

Stole the songs I’d collected inside me

Altered my mind and my spirit

Now there’s no music within me

Now that the songs have all gone

I’m afraid if I sing just a little

I will let out too much emotion

These days are ever-so empty

The weeks are ever-so long

My heart is ever-so heavy

Since darkness stole all of my songs

All I do now is just listen

And watch all my friends as they sing

Longing inside to stand with them

In the Choir I used to be in

Am I Good?

img_5149

I have been reading the Bible.

It is reminding me of all the things I knew as a child, but have forgotten as an adult, like remember the Sabbath day, to keep it holy. Six days you shall labour and do all your work, but the seventh is the Sabbath of the Lord your God.

I would have been smart to remember this lesson.

***

Due to my dad’s faith and our extraordinary Irish family history, my three siblings and I were bought up to be Catholic. I enjoyed attending church with my dad, every Sunday, until I went to university.

I was a timid, modest, perfectionist child: the oldest of four children; afraid of getting anything wrong; afraid of getting in to trouble. I know now that I had Autism, but that I was also born with the propensity to isolate myself and to fall into dark holes in my mind.

Looking back, these Sunday church services were some of the safest moments in my memory.

I need that feeling back.

Our congregation was an extended family and our church felt like home. Singing hymns revived me. Going there was like learning how to breathe properly again, in preparation for the next week-of-life. The week’s anxieties would slot back in to perspective. I was always worrying, always catastophising about the worst-possible-outcome, but Church gave me weekly reassurance that I am good: I don’t steal; I say kind words; I help people in need; I think of others before myself; I am humble; I am giving and forgiving; I appreciate the environment; I respect my family.

I was reassured by the ‘knowledge’ that I am never really alone because I have a protector who does not leave me, who created me because he wanted me to live. I was reassured by the consistent-structure of the church services; the rigidity of the rules; the right and wrong; the smells; the words; the rhythms; the repetition; the flowers; the familiarity; the belonging.

I didn’t feel the need to question if Jesus really did walk-on-water or feed-the-5000. I didn’t try to literally believe any of the bible stories because I couldn’t. I just had faith. I just wanted to interpret them, and apply their messages to my own life in-my-own-way.

And I just loved reading them.

I believe that the messages gave me strength and rationality through my exams and many other stressful childhood burdens. They kept me grounded through times of teenage angst and gave me good-morals. They gave me depth, confidence and comfort and they kept me on the right-track when I was tempted by peer-pressure.

They made me understand my purpose and value in life.

God was like a whisper in my little ear, telling me to keep going.

When you go through deep waters, I will be with you.

Sometimes, I ponder that, if I had continued to attend church as an adult, I wouldn’t have fallen so far down the ‘mental health hole.’

Mental illness can strike anybody, anytime, but I think being a religious child gave me a greater determination to be okay. I think it gave me a better, early understanding of the meaning-of-life. This helped me to make sense of the harder times. Our religious community would work so hard together, to provide encouragement, support, food and company to anybody within our ‘family’ who was in need. It would support a person in crisis better than a qualified Crisis Team, around-the-clock if necessary.

And the church was a place where you could just go.

I don’t think you have to believe in God to find comfort and peaceful-positivity from a church.

For some people, this will sound like brain-washing-bull-shit. Many people will never be able to understand it. I have been ridiculed in the past by friends, for wanting to support my church: the largest non-governmental provider of education and medical services in the world. I have felt like perhaps they think me less intelligent, to believe in something which, to those without faith, makes no sense.

People find all sorts of different things therapeutic in life though: kick-boxing; counselling; choir; nature; tattoos; yoga; binge eating; not eating; reading Harry Potter; self-harm; drugs; alcohol. I, being poor at verbal-communication and unable to identify feelings, wanted to just be able to say little prayers to ‘something’ above, that was bringing me comfort, and donate some pocket money to the poor.

People should do and believe in whatever comforts them, as long as it doesn’t hurt others.

I stopped believing in God accidentally, when I saw my first dead body.

It was the first time my faith was really shaken. I remember seeing the dead person before me and thinking… you really are dead. No more living. It did not look, to me, like their ‘spirit’ was going to live on in the kingdom heaven, even though I desperately wanted it to. Their organs were no longer working: the machine had been switched-off forever.

This happened at approximately the same time I left my church and my Catholic, girls’ school and Sixth Form College, to go to university. There were suddenly no rules, no God, no Jesus, no heaven. Everyone was encouraged to do what they liked, and be who they wanted to be as long as they were happy.

Happiness, rather than goodness, was deemed important.

It was deeply confusing. It felt selfish. Surely happiness comes from being good to others… surely such a ‘right’ to be happy is going to lead to deep sadness?

I haven’t lived like a Catholic girl since turning seventeen. I am not part of any church family and I have lost the purpose, self-belief, sanctuary, comfort and love within me that I had as a little girl. I still respect the faith: to me the world is so scary with all the choice and freedom that is acceptable. I am still interested in all of the different religious beliefs of the world. But the black-and-white world in my head, isn’t the same as the vibrant-chaotic world around me: it isn’t the same as the world my friends and family all experience; it isn’t the same as the one I see on the news or read about online.

God doesn’t whisper in my ear to keep going anymore, but I hope that doesn’t mean I am not good.

My favourite bible story is the Good Samaritan. It is about a Jewish traveller who is beaten and left for dead beside the road. People see him struggling, but they pass him by. A priest and a Levite cross to the opposite side of the road, to avoid the dying man. Finally, a Samaritan stops to help, even though Jews and Samaritans loathed one another. That is what a ‘Good Samaritan’ is: a person who helps people, and strangers, in need.

That’s who I will always want to be.

People still think that the church believes mental illness to be sinful. But in 1953, a vicar called Chad Varah founded The Samaritans charity, to help suicidal people. He did this because he was deeply affected by the first ever funeral he did, which was that of a fourteen-year-old girl, who had taken her life. Throughout his career, Chad Varah had naturally counselled the parishioners that had reached-out to him, but he wanted to dedicate himself to suicide prevention, and do more to help those struggling to cope with depression and contemplating ending their lives. The Samaritans still operates on Chad Varah’s criterion, that the charity should provide confidential and non-judgemental support.

It was Ray’s funeral this week.

People were saying that he is back with his beloved wife, Bett, now, and that is a wonderfully-comforting thought, but I sadly cannot get my mind around it.

I think I will comfort myself with the thought that Ray is not without Bett anymore.

Heaven is in my head, and Ray will live on there, in my memory, with all of my grandparents, Susan, Stanley, Simon, Craig, Alex, Danny, Blake, Keenan, Dolly and all of my other lost loved ones, until whenever forever is.

The Lion King: Autism-Friendly Performance.

img_5098

I had an excellent time in London with Jack and Dan last Sunday. We watched the Autism-friendly performance of The Lion King at the Lyceum Theatre.

It was outstanding.

I felt so special attending this unique show. Autistic people have to adapt to ‘fit-in’ to this world every day. What a complete delight to experience something adapted for us. The Disney Theatrical Group even sent us some additional information ahead of the show, in order to prepare for our visit, including a video visual story and clear information about the volunteers, adaptions and relaxed areas.

We were excited.

***

We waited outside in the fresh-air, before finding our seats in the busy auditorium.

A man called Santiago checked our tickets on the door.

The theatre was beautifully-grand and I had looked at pictures of it online, because I hadn’t been there before, and I wanted to be prepared. It was more beautiful in real life of course. Our seats were splendid and close to the stage. As we sat down together, I had no worries. This was an extraordinary feeling for me to have in a public-place, surrounded by people. My body was relaxed and being itself: the noises from the people around me gave me comfort and told me that they were all being themselves too.

Hakuna Matata for sure.

I realised that in here, I wouldn’t have to apologise for being me.

All of the cast, crew and theatre staff had received Autism training. There were people dotted-around everywhere from The NAS and Disney, wearing clear t-shirts. They were trained-and-ready to help if we needed anything before, during, or after the performance, and they all looked so eagerly-friendly.

There were designated ‘chill-out areas’ in quiet-zones, to be used if we needed a break. Adaptions had been made in the toilets. Theatre staff held-up visual instructions on enormous signs telling us to switch-off-our-phones, and that videos and photographs are prohibited. I wished that instructions could always be given like this, so that if you don’t quite understand, or you have too-much-information to process, or big announcements are too loud, you don’t have to worry about asking somebody to say an instruction again.

You just look again.

It put me at ease that I was in the right place, doing the right things, independently.

Just before the show was about to start, the auditorium door at the right-side of the stage opened, and two characters walked in.

It was Scar and Rafiki.

I wondered if my eyes were tricking me.

Scar and Rafiki walked up and down the aisles in the stalls, shaking people’s hands. The ushers and theatre staff were telling us to look and people were pointing.  Their make-up and detailed costumes were breath-taking.

I was so shocked.

They walked up onto the stage and talked to us all. Scar, in his magnificent voice, welcomed us. He explained that his name is really George Asprey, and that Scar is the character he plays. He told us that he is not really bad, just misunderstood, and that is sometimes how I feel! It made me laugh. It made me relax. It made me wish that the police officers with the guns in Blood Brothers had done that too, to remind us all that it is just acting.

Scar’s speech was clear and caring. He told us that this is the fifth Autism-friendly performance The Lion King has done, and that they are honoured to do it. He introduced Rafiki, and he told us that she will be the first character we will meet when the show starts. I felt grateful to him for telling me what to expect next.

It amused me that his most famous song is ‘Be Prepared,’ and he was the one preparing us…

The house-lights dimmed, but remained on. This meant I could still see what was going on around me, and remember that I was sat in-between my two friends. The noise from the audience continued as Rafiki sang Nants ingonymama bagithi Baba, telling us in her Zulu language that a lion is coming.

I glanced over my shoulder as the saffron-sun rose over Pride Rock.

I could hear non-verbal autistic adults and children squealing repetitively, communicating their wonder and overload. There were people everywhere with ear-defenders-of-many-colours. Nobody was trying to quieten their physical or verbal stimming. For once our differences were socially acceptable. There was hand-flapping, wailing, clapping, spinning, rocking, intermittent explosive screams of joy and overwhelm. There were autistic adults clutching comforters. ‘Autism parents’ were praising, reassuring, explaining. Everyone was free and welcome. People were making their own noises to drown-out the new, unfamiliar ones. People were making friends. A teenage boy walked past me wearing a t-shirt that said: I just really like musicals. Every time a song finished, the little boy sitting in front of us would throw his arms around his mum’s neck and kiss her on-the-lips.

No-one was going to judge any-one for being ‘different’ or ‘disruptive’.

It was liberating.

I did not have to sit and struggle because the lights were too bright or because it was too loud. The National Autistic Society had worked in tandem with the show to assess all of these things, and adjust them for an autistic audience. I did not have to worry that there would be unexpected pyrotechnics, explosions and strobe lighting. I would have felt able to leave the auditorium for a break without feeling weird, isolated, embarrassed, judged, weak, guilty, paranoid or stupid, knowing that somebody would have helped me.

There was so much that I loved.

I loved He Lives In You, because it reminded me of when I sang it in Love Soul Choir: it reminded me of the passion I had, when I taught it to the children in singing assemblies, and it reminded me of all the people that live in me. Can You Feel the Love Tonight was so believably-romantic. Nala singing Shadowlands is one of the best things I have ever seen live. I watched every intricate piece of lioness-choreography, and noticed every costume-detail. Zazu made me laugh the most. The Stampede scene is special to me because of a piece I choreographed for my dancers. The animals that walked down the aisles took-my-breath-away: I didn’t know if I was afraid or in awe of the elephants, the giraffes, the antelopes, the birds. I just wanted to know how the costumes worked.

My favourite character was Scar.

The Theatre is my favourite place in the world. I love to see shows as much as I can, but I am normally the biggest actor of them all: suppressing stims; masking my sensory difficulties; ignoring my boiling-quiet autistic-anxiety. It physically hurts to mask it all the time, and you can’t take-off the mask like the cast can.

I only felt pride there, in the Lyceum Theatre.

I felt proud of myself and the other autistic people: proud of our wonderful, patient friends and families; proud of the theatre cast, crew and staff; proud of Disney and proud of Chris Pike and the National Autistic Society for making the theatre experience magical and accessible for people with various autistic needs and learning disabilities.

From where I sat, it was a roaring-success.

Thank you Jack, for buying the ticket for me for Christmas.

It was absolutely fantastic.

img_5099

 

Dear Saffie-Cat.

img_5041

Dear Saffie-Cat,

I had a meeting at work last week.

As you know, I haven’t been at work since before Christmas, because the private occupational health psychiatrist signed-me-off. This was due to Autism, deteriorating depression, OCD, anxiety and suicidal ideation. I begged the psychiatrist not to stop me from doing the job I adore, but her “hands were tied”, and she sent me back through the Crisis Team and the mental health services.

At the meeting, there was my head teacher and the head of strategy and operations, my representative from my teachers’ union, the human resources manager, myself and my friend Lesley. I had written down everything I wanted to communicate in a letter, and had photocopied it for everyone present. They encouraged me to read the whole five pages, from start-to-finish, and they listened to every single word.

I spoke about what I had been like as a teacher: my systems, my strengths and successes. I talked in detail, and referred to specific moments in my career that stood-out. I talked about how I saw my job, and my passion shone through as I spoke. Everyone remained silent and listened. I spoke about my results, the progress of the children year-on-year. I told them all about what I had loved: coaching other teachers; thinking around corners; creative lesson structures; inventing new initiatives and a whole-hearted dedication to making the children happy, no-matter-what.

My head teacher, who knows me very well, knew all of this already.

I spoke honestly about how things had been at home. Things, at that time, had been bad and, because I had no idea about my conditions, I had disguised the gravity of my situation to my family, my friends and my work colleagues. I had wanted people to see me as being a perfect, happy teacher, and a perfect, happy girl.

I spoke about how, on receiving my promotion to Infant Phase Leader, I developed obsessive ‘checking rituals’ regarding in-coming and out-going emails, which resulted in chronic paranoia and irrational fears surrounding communication and the internet. I lost my confidence when communicating with adults. My brain was constantly telling me that I was not good enough. I quickly realised that, although capable, I had never really wanted to come out-of-the-classroom to do the management jobs: I loved teaching the children too much.

I made many attempts to return to work throughout this year. I was constantly being signed-off-sick with disorientating support from the mental health services, so I was signing-myself back in. I was so terrified of letting my children and my head teacher down. I wanted to be in control of my own life and my own decisions, because I did not feel supported by the health professionals that were signing-me-off without a plan. So, of course, I pushed myself, and consistently failed.

One of my biggest struggles is knowing when to stop. Work had been keeping-me-going over the past ten years. When I go to work, I only think about the children. The more mentally unhealthy I was getting, the harder I was working. I can see this now. I was hyper-focussed on work because it was my coping mechanism, and I fixated on it so much that I didn’t remember to look after myself. At work I could always find a solution: I was efficient and reliable. At home I was afraid of phone-calls, afraid of shopping: queuing and paying. Everything to do with every day-life wasn’t happening: I was anxious about money; I was scared of the bank; the flat was untidy; everything was broken including the heating and the light bulbs. I stopped sleeping in my bed, but I would fall asleep occasionally on the sofa, doing work. I wasn’t cleaning because I didn’t have time, but then I would clean obsessively. I didn’t eat. I did not know that I had Autism. I did not know that I was ill. I think this is because I was avoiding my friends and my family, which is normal behaviour for any depressed, ashamed person.

During one of my attempts to return-to-work, I was moved to Year R, in another one of my head teacher’s schools. I was thrilled by the idea of this, but had no idea how hard I would find it at this time, and I was sad to leave behind the children and their families at my previous school, where I had been for seven, fantastic years. I did not have the skills to cope with such a big change at a time when nothing felt stable in my life.

In my meeting today, I told my head teacher that I am totally loyal to her. I thanked her for always being wholly supportive of me. I told her that I have complete respect for her, and for all of the decisions that she makes.

My head teacher said some things to me that I will never forget. She said that I am one of the most outstanding teachers she has ever known. She said that she would be mad not to have me teaching in one of her schools. She said that, as long as she is a head teacher, there will always be a job for me. She said that having Autism is a wonderful thing, and that once I have a greater understanding about my Autism, it will be a great strength. She said I was highly-intelligent. She made me feel quite valuable.

She and my union representative presented me with options. I had naively expected that one of the options would be for me to return-to-work on Monday, or at the very least in September, but for reasons that make-sense, this is sadly not the case.

I am lucky to have their incredible support, and I have made up my mind which option to take.

Although this is not what I want, I know that to be able to teach I need to be well. I wish I could have had some more robust help from the mental health team so that this didn’t have to happen.

I’m just letting you know that I am now unemployed, Saffie.

I’m telling you because I am ashamed and I know you will not judge. You don’t care that I have lost my house and my job, or that I do not have a husband or children like I’m supposed to. No matter how I am, or what I am, or who I am, I know that you are always there.

Thank you my girl.

Crisis.

img_5042

Sometimes at night, when I can’t sleep, I wonder about what I can do to change the world.

This is a little-bit ironic, because I, and many autistic people, can’t do change very well. But I would love it if I could change the mental health system in this country. I would give it some common sense.

I would start with the Crisis Team.

Over the past two-years, I have been referred to the Crisis Team several times, but I still don’t know what their job is. I don’t think they were supposed to make me feel the way they did: unsettled and inaccessible. That’s not what the internet tells me they do. They are “under-funded,” but on a human-level, the people that saw me made me feel that they just didn’t want me.

Let us take a moment to think about how dangerous that is.

***

Even if you are at the point of crisis, you still have to be well-enough to access the Crisis Team.

When I was with the Crisis Team, a different practitioner visited me every-other-day, at different times. I needed them to help me. Most of the time they were gentle people, who told me I could call them for help any time. But, like many depressed and autistic people, my verbal communication is poor, my confidence is low, and my anxiety is high.

You don’t ask for help when you are at the crisis-point, even if you’re not autistic.

The two separate times my friend phoned the Crisis number on my behalf, (once last year and once last week,) they took over five-minutes to access my (inaccurate) details on the computer, just to tell us to go to A and E.

It must just be me.

They promised me support that sounded amazing, but it never, ever materialised. They would come in and sit on my sofa and expect me to pour-my-heart-out, even if I had never met them before. If I didn’t, (because I was, ironically, too ill, or too sick on my anti-depressant medication), they would think me uncooperative.

They made me feel bad.

They would fill me with hope and leave me empty.

Their questionnaire process would take about twenty-minutes. Then they would go to their next appointment, regardless of my answers, leaving me in as much of a ‘crisis’ as I had been prior to the visit, if not more.

I had to re-live the past in every appointment, with every different practitioner, but nothing moved forwards except the decay of my mental health.

What am I supposed to do? Where am I supposed to go?

Two obvious questions that nobody can answer.

They were just coming round to check I was alive. One day they came at the wrong time and I was at a doctor’s appointment. They sent me a letter in the post saying that if I missed another appointment, I would be discharged from the mental health services, and would need to be referred again.

But I never missed a single appointment.

I never had a chance to know and trust a consistent care-co-ordinator, although I was promised this.

I was not able to identify my feelings, and they never changed their approach in order to accommodate this common autistic trait. The worksheets they came with were low-level and impersonal. They would ask me what I wanted from the Crisis Team, but I was too-ill-to-know, so I was discharged and ‘slipped through the net.’ They would cancel me, ring-me-up to re-organise times, places, patronise me, under-estimate me.

When you are that depressed, you cannot do it. That is what depression is. It physically attacks your brain and your body and your life. I needed them to intervene because I was in a crisis.

Why don’t they know this?

You have to be well-enough to access the Crisis Team.

You have to be able to organise appointment times on the phone, process conversations, answer the front door to let them in, drive down to the hospital when they can’t make the home-visits. When you are depressed, you cannot do these things. I couldn’t do these things. When you’re wretched, you don’t feel like you deserve to get better. You don’t deserve your medication. Your depressed thoughts and habits become so normal that you don’t even realise how dangerously-sick you are. You withdraw from all communication: you are too ashamed (or afraid) to face the truth about what is going-on because of your pride and because of other people’s judgements. Your worries might be too private, too sensitive, too deeply engrained to share with a stranger that you only-just-met, just to be written down in note-form and filed away, or passed-on to a brand-new stranger.

These are some of the more basic symptoms of depression.

You need intervention.

Why don’t they know this?

Feeling depressed, and having depression, are two very-different things. Depression is not about feeling sad. It is an evil, life-threatening illness. You are breathing, but not living. If you are an autistic person battling depression, people just don’t know what to do with you.

***

As a primary school teacher I was contactable by my colleagues 24/7. I phoned the parents up to tell them everything each child did, whether it was good or bad. I made time. I did this because it was my vocation and I cared about the children’s lives.

The school system didn’t tell me to do this, it was human nature in my-line-of-work. It was my decision to do the things I said I would do, and manage my time effectively.

I never would have told one of my children that they “obviously had a learning dis” because I wouldn’t want to break their heart.

In February, following a formal complaint about my care which unearthed twenty-three separate investigations over eighteen months, I was finally assigned a care-worker who would get to know me, work with me weekly and help me to get better. The last time I saw her was in March, and she has not contacted me since. It is June now. During that time I have had my contract terminated at work because I am not better.

I wonder how my care-coordinator thinks I am.

It is a funny-kind-of crisis care.

It is lucky that I have made myself stronger, with the help of my private psychiatrist, who I see at The Red Lipstick Foundation charity, and I am now working on being my own mental health practitioner.

In conclusion, to be helped by the Crisis Team you need to have some mental capacity: you need to be organised despite your illness; you need some confidence; you need to be lucid, receptive; you need to understand your feelings and be able to share sensitive, private things coherently with any stranger who turns-up. Preferably, you need to not-live-alone. You need to be able to pay for parking and petrol: you need to be flexible; you need energy; you need patience, and you need to only have one mental illness at a time.

Social Butterflies.

img_5040

I would be a great party-planner.

I imagine immersing myself in the detail of it all: the colours, the cake, the food, the dress-code, the invitations, the entertainment, the play-lists, the lighting, and the decorations.

I could tie it all together with a theme.

I could make it really perfect for somebody.

***

I wish I was good at going to parties.

Going-to-parties is one-of the top-ten things that I am bad at. This is unfortunate, because I want so badly to be good at it. I look-forward to parties so much because in my head I’m a neuro-typical girl. I think about what present to buy. I like to make a big-effort to find the right card. I worry a lot about what to wear, because I am not fashionable, and most girls my age are. I like to make sure I am familiar with the venue in-advance, because it is important for me to know where all the doors and toilets are. I like to travel there with a friend so that we can share the ‘hellos’ on arrival, (or maybe I can smile and nod and they can talk for me…) I plan the timings intricately, because I need to know when I will arrive and when I will leave.

These are not choices and decisions; they are social-survival mechanisms.

***

It is my friend’s 40th birthday party. My taxi arrives at the venue and I am early, and I’ve got butterflies. For fifteen-minutes I sit on a wall outside, practicing what I will say when I walk through the door. Happy Birthday John, here is a card for you. I want my voice and my smile to be bright when I say it. I try to predict John’s reply so that I can be ready for every eventuality, but the butterflies are getting everywhere.

I like to know what is going to happen next all the time.

I haven’t been here before. I have memorised the guest-list. The band is at nine-o-clock. My taxi is booked for ten. By ‘normal’ standards, I am hyperly-organised. Everyone looks so dressed-up and I feel out-of-place. I feel out-of-place whenever there are people near me. I’m not sure where the toilets are.

I’m starting to worry that my taxi home will arrive early, and I haven’t even walked through the door yet.

I head toward the bar because I feel dangerously-safe when I have a glass-of-wine in my hand. It calms my social butterflies. I am still clutching the birthday card. I haven’t said, Happy Birthday John, here is a card for you, yet, and the words are getting impatient.

I give myself an instruction to go and find the toilets.

The bar is noisy because the dishwasher is being unloaded, the coffee machine is hissing and the music is blaring. Someone has got a laugh so loud that it could pierce my ears. Even the carpet is loud. The band is sound-checking over the music.  Happy Birthday John, here is a card for you, Happy Birthday John, here is a card for you.

I am ready to see John, but he is nowhere in this big crowd, and it is making me want to pause time, and crawl into a hiding-place.

Things are not how I visualised they would be: things are happening differently. I tell myself that this is normal, because I am not psychic and this is a party. But this does not help me at all, because preparation and visualisation are not choices and decisions to me, but social-survival mechanisms.

I am ‘literally’ swallowing anxiety.

I haven’t joined my friends yet, because I still haven’t seen John to give him his card, and I planned that this would happen first. Happy Birthday John, here is a card for you.

I stop looking for the toilets a) because I look ‘lost’ when I am wandering on-my-own b) this might attract attention c) if someone asks me if I’m lost, I don’t want to have to say that I am looking for the toilets.

There is a girl with a pretty dress at the opposite end of the bar: her shoes compliment her dress impeccably. I wonder how she knows how to do that. I wonder if all of her clothes match like that. Her hair is done in an up-style that suits her. I wonder how she found out what suits her: I wonder if I will ever know what suits me. Her nail-polish doesn’t match the colour of her dress but it clashes in a deliberate way. I can’t help but think that if I swapped clothes with that girl, I would look a mess, yet she looks glorious.

I decide that she is a creature in her natural environment, so I copy her.

This is how I will know what to do and how to do it. I will concentrate on being her mirror image. If I stand how she stands, hold my drink how she holds her drink, smile how she smiles, say what she says, I will be okay.

I will be okay.

Someone grabs my shoulders, turns me round and hugs-me-hello, unexpectedly. It is my friend Ann: “I’m going to share your taxi home if that’s ‘ok’…” she says “…we can stop at mine before yours… I was going to drive, and then I changed-my-mind, last minute, you know… is that ‘ok’?”

But I haven’t got any words ready for her. And this is… sudden.

Happy Birthday John, here is a card for you. 

I can’t stop saying it.

Happy Birthday John, here is a card for you. HAPPY BIRTHDAY JOHN, HERE IS A CARD FOR YOU

Ann looks like she thinks I am angry, but I am scared.

The words burst-out before I can stop them. They are bursting out-of-me because they have been hanging-around in my head for so long.  And I am a balloon, not a butterfly. And I am hot. And I want to be hidden. And I am about to burst.

The rest is private.

***

I have had a few social disasters lately.

It takes me two-days and a depressive-episode to get-over-them.

It is hard to know your limits unless with hindsight. With hindsight I know that I cannot be social for the same length of time as other people can, because socialising with people is unpredictable. I must either take lots-of-breaks, or leave a social-event early, so-as to avoid the unbearable side-effects of socialising. This is sad. I am a wannabe-social-butterfly: I really love people.

But I think I’m just a caterpillar, and I can’t change.

I think I’ll stay at home and be a party-planner. I could make it so perfect for somebody.

Ray.

img_0033

Ray. You died at the weekend. I’m not sure if you know, because you made yourself a cup-of-tea and then you sat down to drink it. That is quite a normal thing to do, isn’t it. I don’t think you thought that you were going to die.

I didn’t think that you were going to die.

That Saturday was Prince Harry and Meghan Markle’s wedding day. I went to Lesley’s to watch the wedding with her, Barbie, Ryan, Ellie and Elliott. We watched The Greatest Showman too. When I was getting ready, I thought, wouldn’t it be nice to invite Ray, but it was one of those swift thoughts that flies out of your head as soon as you have your next thought. I don’t know if you watched the wedding or not. It’s not really important. I am just trying to imagine what you did that day, and how you were feeling.

Last week, you said you were feeling great. You said that you felt more like yourself. You had been through a difficult time recovering from that horrid flu: it left you weak and very dejected because you weren’t able to do the active things you were used to doing: the walking, the tennis, the gym.

But last Wednesday you looked bright.

Before I did your cleaning, we had a good chat, as we always did. I sat on your bed and you sat at your computer desk. We talked about the shows I’ve seen recently and we talked about the choir. I told you about the big meeting I was going to have at work on Friday and you listened and gave me some very wise advice.

I want you to know that I said all of the things you told me to say, and they listened to me. I want you to know that the meeting went very well and was very fair.

You said you hoped, (for me)  that I would be able to return-to-work, but that deep-down you hoped I wouldn’t, so that I could still be your cleaner on a Wednesday at 10am.

This made us laugh.

You’re so silly. I said I would just clean in the evenings or at the weekend instead.

It’s quite an intimate job, being a cleaner, changing bed-sheets, being amongst all of your belongings and business. I am only realising this now.

It turns out, following the meeting, that I am still available to clean for you on Wednesdays at 10am, and do your shopping afterwards.

It made us laugh that you would write me a shopping list for Asda, but of course you didn’t have to, because I knew it off-by-heart: 5 Fairtrade, greenish bananas; extra special vine tomatoes; sweet oranges; a small bag of new potatoes; a pack-of-four jacket potatoes; free-range, medium eggs; Cravendale, semi-skimmed milk; Kingsmill 50/50 bread with no crusts; Richmond sausages; bleach; Weetabix; frozen peas; salmon fillets; rice pudding and 4 microwave meals. But you didn’t want me to do the shopping last Wednesday, because you had met an ex-police officer friend, who lived downstairs in Hillier Court, who you’d been to Marks and Spencer’s with.

***

Normally, while I cleaned, you would rehearse the whole One Sound 2018 set in your newly-cleaned bedroom. The songs were all in-order from America to Livin’ on a Prayer, and you never missed a single harmony. It would take me the exact length of those eight songs to clean your bathroom, lounge and kitchen, and it warmed-my-heart to listen to you sing.

Bless you, Ray.

After that you would gossip about all the different people at choir, tell me stories about your fascinating life with Bett, and about all of the many different jobs and homes you’d had. I loved listening. I loved Bett because of the way you spoke of her. I loved it when you said that you had an argument with Bett every-single-day, and that that is the secret to a happy, long-lasting marriage.

I think everything you said and did reminded you of Bett. We never had a conversation without you mentioning her. It is the fourth anniversary of her death today, and you are with her. I am so happy for you.

This week we just listened to Smooth Radio. I was cleaning your bathroom and you poked your head round the door and shouted “is this James Arthur?” I got the giggles a) because it was Ed Sheeran, and b) because I was thinking why does an eighty-three year-old man know who James Arthur is? We also listened to Billy Joel and Simon and Garfunkel.

Two weeks ago, when we were drinking wine on the balcony, we made some plans together: we were going to go to the beach, and get fish-and-chips, we were going to explore some little country pubs. You told me about your trips to Las Vegas and you said that you might like to go on a cruise on your own. I can imagine you doing that. You said if you wanted company, you could make friends with people by the pool, at the bar or in a restaurant. You told me to have a go at going on a holiday too.

You really knew how to live. And I had no worries when I was around you.

One of the last things you said to me was: I’ll be eighty-four soon, I don’t know what I’ll do when I get too old to come to choir.

***

On Monday, I went to the shops to get some things for Lesley, and I took them to her house. I remember there was thunder and lightning when I knocked on the door. We had a cup of tea and then she told me that she had some news. I said is it bad? Lesley nodded. She said “It’s Ray,” and I said “where is he?”

I didn’t think Lesley was going to tell me that you had died. It doesn’t feel right or true, even now.

I bought her some roses because I know how hard it is to tell people when someone has died, especially because Lesley loves you so very dearly and whole-heartedly herself. You loved each other.

I stayed at Jack’s Monday but I couldn’t sleep, so I sat-up and wrote a tribute to you, to share with all of your friends at choir.

You are really easy to write about.

I think you will have liked the words, and it’s sad that I cannot read them to you. I read out your sister, Chris’, email too. Lesley thinks you will have been proud. You would definitely have been proud of Jack and Lesley. At the break, Jack read out the Facebook status you wrote after your birthday party and many people laughed through their tears. You were so missed on Wednesday, Ray. Lesley thinks this all feels like a dream and that you will be inviting us over for coffee later.

I feel like this too.

I walked to Hillier Court on Tuesday to give cards to your sister and your friends in the other flats from Sing Now Choir. I walked out into the garden and could see your favourite chair though the balcony doors. Your car is still in its parking space.

I am not sure why those things feel so strange.

I rang Ashton to tell him that you have died. He spoke about you so fondly and said God will look after him. I think Ashton is a bit like us, he can’t really believe it. When you first joined Sing Now Choir, you asked Jack if I was Ashton’s carer. Ashton thought that was so funny, he said “she is my carer, she just doesn’t get paid!”

The things I miss about you are a bit weird: I miss your enormous ears and enormous cuddles. You remind me of The BFG. I miss when I buzz your door and you say ‘come on up.’ I miss how you called everyone ‘babe.’ I miss your matter-of-factness. I miss your singing. I miss your home. I miss how you said ‘hello’ and ‘goodbye’ to me at the start and end of every choir session. I miss your funny-flirting. I miss you going on-and-on about the Sing Now website. I miss our honest chats. I miss your strength. I miss how meticulous you were. I miss you pulling funny-faces at me when you’re all singing in lines at choir. I miss your stubbornness. I miss you blasting out Barry Manilow in your car when we drove to places.

You’re not really a normal old man.

I know that you didn’t want to clean or change-the-bed or do the big-shopping any more, and I want you to know that I would have done that for you forever, and anything else that would have become necessary as the years went by.

Not many girls my age can say that they are friends with a funny, wise, handsome eighty-three year old man like you. I am privileged to have been your friend. Thank you for everything you taught me. I will be thinking of you forever, Ray, and I will look after our Lesley and everyone.

Rest peacefully, Ray Dyball.

Love you.

Changes, Routines and ‘Changing Your Mind.’

img_4752

Routine is more important than food to me.

Without a daily, weekly and monthly routine I do not have the self-confidence or flexibility-of-mind to function in the world. I do not feel safe in the world. Days without routines are disorientating. It’s like treading-water in the middle of the ocean, and not knowing which direction to swim in. You panic because you are out-of-your-depth: you don’t know what is coming next and you fear that your autistic mind might not have the skills to process it, order it, or make the necessary quick-decisions to cope with it.

I need to know what is going to happen next, all the time.

Routines mean that we know what we are doing, so we can focus-on keeping our sensory alarm-bells quiet. Routines are our instructions on how to be in the world. We learn the routine, we get good at it because we repeat-and-repeat it, we find comfort in it, and we feel good that we are behaving and succeeding, like other people do.

But of course, life isn’t that easy.

Sometimes, plans change, like a red-eyed bull, bulldozing through your planner. It changes your direction and expectations, leaving you standing amongst it all with your head in your hands screaming NOOO! Autistic people can be intolerant to change in the same way that some people are intolerant to nuts or eggs or pollen or gluten: it’s all about finding ways to ‘cope’ with the changing world that we are not built for.

Let’s face it, nobody likes change. But the difference manifests in the mental and physical impact change can have on someone who is autistic. The impact of ‘change’ can last days and days…

It is impacting on me right now.

On a ‘bad’ day, when the smallest plan or routine changes, my anxiety flips from zero-to-ten in one-second. That anxiety hinders any ability I might have had to adapt and re-plan. It disables me from thinking at all: I know how to swim, but I cannot retrieve that knowledge from my brain at the moment, because I didn’t plan to be swimming right now… and it’s making me anxious, and the anxiety is hot… and it looks like anger to you, but it’s not, it is fear…

The battle my body fights to resist the change leaves me with chronic pain.

That is the negative side to it, but there are positives to being a stickler for routines.

I think my dedication to routines is why the behaviour of the children in my class is always outstanding. Nothing unexpected ever really happens. We share an accurate plan for every lesson together and I am in control of any changes. Changing-the-plan sometimes becomes part-of-the-plan, and we tell each other that it is good to make changes-for-the-better, because that means we are always learning. We just have to remember to communicate the changes very slowly, and very clearly, so that we are not confused. Together we succeed because we are secure. The children are not anxious, I am not anxious. They know their places, their roles and responsibilities, their time limits, my time limits, my expectations. And when something out-of-my-power does change slightly, we cope with it all together, using clear reasoning.

Before my Autism diagnosis, I wondered why I got-along so well with the autistic children: I think it is because they knew what was going to happen next, all the time.

Every child was trusted, calmly-confident, valued, safe and independent because of crystal-clear communication and routine. After a few weeks of practising, we perfected some highly-complicated classroom routines, enabling me to ‘juggle children.’ I could teach two-or-three six-year-olds at a time, whilst the other twenty-nine worked independently, and they did so passionately. They knew my lesson structures. They knew I would be with them soon. In return, they received pacey, creative, intricate, personalised-learning, attention and care, pitched-perfectly right for every corner of their little-individual minds. We all liked helping one-another to be peaceful, to be extra-tidy, to be patient, to be encouraging, and we could all have fun because we were safe. What joy it gave me, to be able to use my (then undiscovered) Autism struggles to benefit the children.

I accidentally taught them all like they had Autism, because I had Autism, and it worked.

I used all my energy-up making a perfect-world for the children in my classroom, but I didn’t do the same for myself at home.

I need to run my home like my primary school classroom.

But of course, life isn’t that easy: people get ill, the weather is all wrong, people move house, there’s traffic, people change their hair, the car breaks down, people’s moods change, things get cancelled, people die…

If you are close to an autistic person, you will probably know all this already. You will already know that it is important to communicate everything very clearly: to plan things in detail, in advance; to talk through plans several times before any event; to keep to the plans; to be as consistent as possible; to take time to discuss any changes that need to happen in a very clear manner; to be patient; to be understanding.

It is hard being autistic, but it is also hard being friends with an autistic person. Friendships between autistic and non-autistic people are very special when they work out. I am reminded of this every day when I think about the extraordinary friendships I have.

Thanks to my friends, I am able to socialise, even though ‘Autism’ doesn’t generally want me too.

This month I have seen some wonderful shows with my friends, including Harry Potter in Concert at the Royal Albert Hall, where a live orchestra played the soundtrack to the film The Chamber of Secrets. I also saw Blood Brothers at the Mayflower, which is one of the most devastatingly-brilliant performances I have ever, and will ever, see, I am sure. This is thanks to my friends who include me, who patiently talk through the plans with me time-after-time: they tell me what we are going to be doing next, how long it will take, when it will finish, who will be there, where we will sit etc. I think it helps them too.

It takes away my anxiety and fear-of-the-unknown and enables me to enjoy social times in a safely-structured way.

They stick to the plans without ‘changing their minds,’ (which is a very complex and painful-sounding habit that many ‘neuro-typical’ people often tend to do.)

I don’t know how to ‘change my mind.’

If I could ‘change my mind,’ I wonder who I would be…. I wonder what kind-of-a-mind I would choose… I wonder if I would still choose to be Autistic…

I don’t know…..