The Bank.

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I have a storm in my tummy.

I have tasted a lot of bad-feelings this week, and I wish I could spit them all out.

I have tasted shame, disappointment and rejection, with a side of public-humiliation. I think those are the right names for the feelings I have tasted… I don’t like them. Whilst Autism can be a gift, this week it has been a punishment: it has ruined my relationships, mired my motivation, my progression; distressed me, depressed me, shocked me, isolated me. The more ‘neuro-typical’ and sociable I have tried to be, the more Autism has punished me and pushed-me-out. The more I’ve tried to fit-in, the more Autism has reared-its-ugly-head, distanced me, and reminded me (and the unfortunate people around me) that however much I try to disguise it, my brain functions differently.

 This week it has barely functioned at all.

I wish I wasn’t autistic.

Autism makes my depression worse, and depression makes my Autism more obvious.

It’s just ‘one-of-those-weeks.’

***

I had been putting-off going to the bank for eight days.

I needed to pay money to my psychiatrist, and to a friend for a ticket to a show. Banks are my nightmare, along with doctors’ waiting rooms, public toilets and trains.

I take out my Autism card, (which is there to help me alert people that I need extra-help in social-situations) and loiter by the entrance to Natwest for fifteen minutes.

Finally, I walk in and suss-out the environment: the place is purple and empty. I sit down in a chair to triple-check the details for the payments, then edge over to the queue. A sign says please wait here, and I am grateful to the bank for giving me an instruction. I know that one of the bank ladies has seen me, but she is not inviting me over.  I have already practised what to say when she does.  

“I need to pay money into two different accounts.”

Without looking up, she tells me that they have been “having lots of ‘problems’ today.”

I didn’t expect this.

I am not sure what this means because it is not clear. Do I need to respond? Does she want me to say I will come back another day? There is an awkward-silence in which I notice her neat-black hair, her flawless-olive skin and her, (what I have heard people describe as) resting-bitch-face. I decide not to show my Autism card, because it feels all wrong: I already feel inconvenient, enough.

Life would be easier if you could just see Autism.

She asks me for the details for the first payment, but now there is a queue of people behind me, and I don’t want them all to know that I see a psychiatrist.

“I have written all of the details down for you,” I say, as I try to post them underneath the glass.

“Be easier if you just read them out to me…” she replied, “…my eye-sight is terrible today… what is the name of the account please?”

I didn’t expect this.

My insides fizz-up like a shaken-lemonade, and I have the urge to leave the bank, but I am fighting it. I glance over my shoulder at the long queue of people, then down at my notes.  “Please make it payable to Living Well Clinical Psychology Limited,” I said.

“Living… what? Can you speak up, please?”

I fizz-up, again, pressure builds.

“Living Well Clinical Psychology.”

I am hot and bubbling. I am not sure what my body is going to do next. I can feel the eyes of the people in the queue staring at the back of my head. I can feel my own eyes fizzling with red-hot water, the way they do when I am reaching-my-limit.

I give her the account-number and sort-code and she asks me to “check them, then press enter on the machine.” I realise that I am swaying back-and-forth, in an effort to quieten all the bank-beeps, and to quieten my anxiety enough to double-check the numbers: I clutch the counter to steady myself; she flashes a peculiar look; I am embarrassed.

“You have written Living World…” I tell her, “but it is Living Well…”

Even though it was her mistake, her rolling-eyes tell me that it is my fault. She looks beyond me at the queue as if to say, you are really holding me up now. I apologise for myself, but she doesn’t hear me, because she is now slagging-off one of her colleagues to another colleague. “You and I have a system,” she says, “but if I ask Callum to do anything it’s a bloody-nightmare, I just may as well do it myself.”

I don’t think I was supposed to overhear that, so I am now trying to unhear it, whilst giving her all the payment details again, and worrying about what the people in the queue are thinking about me. I can barely recognise the numbers when she asks me, again, to “check the details on the machine:” I am trying to match them to my piece of paper, but I am overloading. I cannot hold the information in my head long-enough to be able to “check it,” so I just press enter and pray.

“And the second one?” She says, handing me a ‘payment confirmation slip’.

But I have had enough now. I need to leave now.

I am so shaken-up that I am about to spill all of the pressure all over the floor.

***

I had planned to do a few jobs after my trip to the bank, but I couldn’t do any of them. I drove home and got straight into my bed to hide from my own incompetence.

Two-hours later I woke up with a storm of bad-feelings in my tummy. This week has consistently added to the bad-feelings.

There isn’t a single part of me that doesn’t feel unlovable.

I feel guilty for being autistic.

I am sorry for being autistic.

I can’t express bad feelings to my friends, but I know that the world makes other people with Autism feel like this too. I’ll write for them, and the friends and families that want to learn how to help autistic people in social situations. I’ll write also because I am learning that this ‘badness’ is temporary, and that perhaps next week something great will happen, or I will find someone that will make me feel grateful for my Autism.

I wouldn’t be me without it.

I’ll keep on trying my best to find ways to ‘live with it,’ and for others too.

But I won’t be going back to the bank.

Empathy.

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Well done Sing Now Choir, for One Sound ‘America,’ ’18.

Well done for every-single sound, step, smile: I noticed it all as I watched from the back.

Well done to the noble front-rows, the free-styling naturals and the loud, lion-hearted leaders of our proud pride.

We need you.

We need the poise of the sixth-row-singers that you can’tsee, but you can’t be without. We can’t be without the belting-gifted, and we are-notright without those that get-it-wrong, and carry-on. We need the passion of the ‘pros’ and the passion of the people singing for pure-mental-therapy.

Well done everyone.

Well done to those that don’t mind heights; those that are fighting their own bodies to be able to perform with us; those that feel guilt for suspending-responsibility for one-night-only, to sing their hearts out. Well done to the shy and the bravely-anxious; well done to the pockets-of-people that build their own support-systems to enable everyone to be included. Well done if you don’t give-up and well done if you praise yourself, even if you weren’t perfect. Well done if you’re in the limelight and well done if you’re not.

Well done if you did it your way.

That is inspiring.

If you mimed because of the lump-in-your-throat, or if you committed to a wrong-note and owned-it, I saw it all, well done, it moved me to the core.

I joined Sing Now Choir when it was born, over three years ago now, when there were ten of us, and we decided to be a family.

Now look at us.

Well done us for accepting everyone into our ‘choir family’ because ‘singing is foreveryone.’ Together we are young and old, quiet and loud, sick and well, confident and shy, strong and vulnerable, happy and sad. Together we have everything covered: we can sing anything and we welcome everyone.

And we started as a small, orange idea in the ‘mastermind’ of Jack.

***

As I watch the choir, I ‘stand in the shoes’ of every singer I can see, and I imagine the journey they have taken to get to that stage. Everyone has a ‘Sing Now Journey’: a different reason for turning-up every week. Some of it is to do with singing, lots of it is much, much more than that.

I watch my best friend, Lesley, with all my might, wishing that her husband and her mum and dad were seeing what I am seeing.

***

Some months ago, someone told me that “autistic people lack empathy.”

Autistic people lack empathy…. autistic people lack empathy…

I’ve spend a lot of time worrying about this, wondering what empathy is, and if I have it.

***

I went to see Broadway star Natalie Weiss at the Leicester Square Theatre in London with my friends this month. She is a phenomenal singer. She shared with us some of the troll-comments on her YouTube videos and the nasty-last-one said “this girl couldn’t act her way out of a paper bag.” In response, and before my eyes, Natalie Weiss got into a human-sized brown-paper-bag and began to sing one of my favourite songs: With You, from Ghost.

This song means the world and more to me.

You have to be special to sing this song to a girl that really has lost her love.

It took Natalie Weiss two words to make tears roll down my face… and she was standing in a paper bag. Phenomenal. She made me cry for every bereaved person in the world as I sat in that theatre chair, and watched her pull the paper-bag down a little, so you could see her face.

It felt like she was singing the song inside me.

It was delicate, stripped, real, moving: the sympathetic pianist just tickled the keys and I had so many feelings. I have no idea what the feelings were… (Grief? Peace?) …but I think one of them was sheer empathy.

***

My worst feeling is someone else’s disappointment; I find it unbearable.

Disappointment is loss. I never want anyone to feel loss on any scale.

I want to ‘get behind’ people and ‘give them a hand’ with whatever they want to do. It’s like being a cheerleader, launching people into the air to do something impressive, and catching them on their way back down. Jack says I always support the ‘under-dog’, and it’s true. It is amazing, too, the things you can do, if you don’t mind who takes the credit.

If someone is feeling ill, I want to feel ill for them. I rescue ants, daddy-long-legs, spiders and woodlice. When I see a dead hedgehog on the road, I feel heartbroken for its family: I put myself ‘in the shoes’ of families on The News and I feel their pain. I cry behind cushions when Dan and I watch Blue Planet. I find that documentaries, about other people’s grief, make me nauseously-compassionate. My body tingled-with-helplessness when my mum and I went to the vets last week, and she managed to say “…my cat Merlin has died, we think he has been run-over…” When Lesley confides her sadness in me, I feel it for her, and am compelled to fix it no matter what, and yes, the ‘sob-stories’ on the X-Factor do make my tummy flip.

I think this is empathy.

I don’t really know what empathy is, because you can’t see it. I think it means that you ‘tune-in’ to a person’s feelings and share them: a bit like singing in harmony with them.

I think it might be all the flickery-details I notice on a face, that tell me if that person is ‘alright today,’ even if they are pretending. It might be the energy that moves in-between me and a person when they talk about something important to them. It might be the pang I feel inside me when someone’s voice cracks. It might be the way I can ‘read-their-minds’ even when we don’t talk, because I find clues in the way they stand, sit, sound, interact.

It might be why I find it hard to ask for help.

I must have empathy.

I can relate to every child in my classes: their pride when they understand things; their frustration when they don’t; their misery when they break-up with their friends; their joy when they are praised; their despair when they fall-over; their delight when they help another child; their uneasiness when there are difficulties at home; their challenging-behaviour when they are anxious.

When I was a child, I cried when my dad got a new car, because I didn’t want the old car to feel rejected.

Autistic people do have empathy: extra-detailed, bucket-loads of it. The problem is not knowing what to do about all the empathy we feel. It can be overwhelming, having so many other people’s feelings feeling-around in your head, and if you are a bit expressionless, with poor eye-contact and social-anxiety, it is not always easy to express it.

I am very connected. I constantly absorb the feelings of other human beings. I see what people need and feel, and I fix things for them.

I do have empathy, and so do other autistic people.

(I am not a psychopath.)

A Series of Unfortunate Events.

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On 23rd January 2017, my best friend drove me to the doctor.

I am broken: my legs won’t walk, my brain is off. I am having overwhelming intrusive thoughts about ending my life in different ways, and I am fighting a battle against them. I cannot tell anybody.

Doctor Harriot increased the Sertraline that I was taking and told me to “come back in four weeks.”

But Jack drove me back the next morning.

We saw a locum. She prescribed Diazepam and referred me to the Crisis Team at Amity House. Crisis Teams care for you if you are having a ‘mental emergency’ in the community. A mental health practitioner visited me every-other-day at home after that.

I feel muddled by all of the different appointment times. Every day a different face, but the same punishing questions. I have been promised an appointment with the psychiatrist, but unfortunately he is off-sick. It’s like being on parole: they’re just checking I haven’t killed myself, but no-one is helping me get better.  

In March, I got my appointment with the psychiatrist, Dr. Quick. He was intelligent and direct. He interviewed me for hours. He increased my Sertraline to 200mg and augmented that with Quetiapine. He gave me Zopiclone to help me sleep. I was diagnosed with Depression, Anxiety, OCD, an ‘unspecified trauma disorder’ and potential Autism Spectrum Disorder and then I never saw him again.

Autism?

Each ‘label’ feels like a heavy suitcase that I am just supposed to carry around without anyone noticing. No professionals are helping me open-up and unpack them.

Two days later a man called Christopher-from-the-Crisis-Team knocked the door.

He looked like Bill Oddy. He was wearing baggy jeans and an un-ironed shirt which was too small for him. His hands were juggling disorganised paperwork about me. He was talking, but I could not hear him, because my eagle-like senses were exceptionally heightened and circling and merging and all of a sudden, I was Sherlock Holmes: he’s a smoker. He just smoked a couple of cigarettes on his way here and is probably thinking of his next one right now. He is also thinking about stopping off at the shop on the way home to collect a bottle of red and a bar of chocolate because he, himself, is depressed, and these are the things he self-medicates with. The circles beneath his eyes cast a shadow on his face that not everyone can see, but I can. I feel sad for him and his sadness, whatever it is. One thing is for sure… he does not want to be here with me.

 I sat there, battling the chronic side-effects of my new medication, trying and failing to focus and remain awake through the loud-cloud of depression. I felt royally-sick, lethargic, spaced-out. I wanted to help Christopher help me, but he just needed to tick-boxes on his worksheet.

Jack told him about our visit to the psychiatrist, and the Autism services referral.

“I knew it was going to be some kind-of ‘learning dis,”’ he said.

I went cold. It was like he had forgotten that he was talking about my life.

“The waiting list for an Autism assessment is six-months to two-years” he said, as if discussing the delivery time for a pizza. He transferred me from the Crisis Team to the Community Mental Health Team and cut my appointment short.

It took three weeks for my notes to be transferred to the Community Mental Health Team.

When your mind is vulnerable, three minutes can be a lifetime.

In those weeks alone, with no professional support and increasing worthlessness, I made fourteen desperate calls to The Samaritans. How can I be having these thoughts, I pleaded, when I have been bereaved by suicide myself?

Finally, the CMHT told me that I needed a consistent care-co-ordinator and that they would be in touch by phone to arrange this. I felt relief bleed-through the chaos. But two long weeks later, I receive the phone call: they tell me that despite [my] complex mental illnesses and suicidal ideation, [I] will not be able to receive help from any mental health services until [I] have the results from [my] Autism Assessment.

This disjointed-messy process happened to me twice.

They don’t want me.

My GP tried to speed-up my Autism assessment referral, but she sent the chase-up letter to an Autism charity by mistake. Due to a lack of help, I decided to try and ignore my sickness and integrated back into work several times… and moved house. Working was my obsession and my only purpose, until, devastatingly, I was twice signed-off by occupational health.

One bad-mad night, my friend had to contact the crisis-number that CMHT had given us, and was told to “take her toA&E if you want, but unless her leg is hanging off, there isn’t a lot they can do.”

 Something black-and-ugly in my brain calls me unrepeatable names; flashes violent thoughts and images through my mind insistently; drains my energy; tells me that everyone will be better off without me.

I went from crisis-to-crisis. I tried to escape it but it followed me. It told me things. I believed it. I listened to its’ instructions. I made an attempt on my life and was taken to hospital.

It isn’t me: it is a monstrous, mind-consuming beast-illness that takes over me. I don’t even believe I have the right to take my life, but I do believe that ending my life is the only cure. Everyone will be relieved because I will be at peace and they can continue their lives unburdened, I thought.  I want to communicate. Please section me, please take me away from myself before I take myself away.

Before being discharged from the hospital I had to be “assessed” by mental health to make sure I was “medically fit.” I wasn’t allowed anyone with me. The lady told me that I “didn’t look autistic.” The lady asked me if I had wanted to die and I said no. I was afraid. The lady seemed to be in a hurry.

She told me not to do it again.

You didn’t try hard enough. You didn’t try hard enough.

I was discharged with a ‘care-plan’ of self-help websites and a plan in my mind to try harder next time.

Overall, the NHS complaints team have identified, and are carrying-out, twenty-three separate investigations following my path of experience through mental health services. Despite everything, I am on their side. It is a flawed system, filled with genuine, hard-working, knowledgeable, professional people who are too often unable to do the job they desperately want to do.

I worry for them.

I worry for the patients that cannot turn to private counselling. I worry about the financial strain on local mental health charities. I worry about the lack of support for the family and friends caring for the depressed, the anxious, the suicidal, and I worry about what I can do to get myself better so that I can help.

In England, about 70% of people with Autism have associated mental health disorders and have recurring suicidal thoughts, or have made attempts to end their lives due to combining-factors such as anxiety, social-isolation, self-persecution, sensory-stress, miscommunication, misunderstanding, burnout etc.

I have found therapy in my invaluable friends and family, my animals, my choir, my writing, my music and The Red Lipstick Foundation.

What’s your therapy?

 

 

 

Knowing What To Do and When To Stop.

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Imagine that the Autism spectrum is a cluster of one-thousand random stars.

Imagine that each star represents a part of Autism, and that all of those stars are connected inside the brain of somebody who is Autistic.

Not everyone is ‘on the spectrum somewhere.’ That is a misunderstanding. Those that are, experience all of the parts of Autism to varying degrees. You cannot be ‘a little bit autistic’: all autistic people have their dimmer stars and their brighter stars.

Some are more apparent to ‘neuro-typical’ people than others. But some of the most debilitating traits of Autism are completely invisible.

Executive functioning is one of those one-thousand stars. It is something I am bad at when I am tired, anxious or hyper-focussed: it is an admission that I never dreamed I would share; it is something that I still do not fully understand.

***

Executive function refers to all the thinking skills that help you cope in your daily life and get things done. It is the ability to make a decision, change a plan, multi-task, stop a task, regulate emotion, filter-out unnecessary sensory information, remember a full set of instructions, carry-out a task in order and create a sensible ‘balance,’ etc.

Having poor executive functioning is a bit like being an Alexa-robot: you respond well to direction and can carry out clear instructions with speed and precision, but without those instructions you don’t really function at all.

It was one of the first indicators that pointed towards Autism in me.

I was thriving at work having been promoted: I would finish my jobs and then do someone else’s. I was obsessed with progression. I was fast and thorough. I was obsessed with intricate marking, data analysis, grades, inspiring planning, inventing new initiatives, delivering the best-lessons-ever, aiming for beyond-outstanding, creative-contexts, innovative coaching, and perfection. Addicted to making everyone’s lives easier and frightened-to-death of letting somebody down.

I was giving my robotic brain work-related instructions constantly. I was wholeheartedly devoted to my career: married to it: the children, their education, their wellbeing. It became irrational. I was striving for unrealistic goals. Feeling somehow responsible for everything that went wrong.

I could not stop.

Consequently, in the weeks building up to my 31st birthday I ate nothing. I drank a bottle of wine every night whilst working in my one-bedroomed flat. The heating was broken and, with no double-glazing, I was freezing cold. All of the light-bulbs needed replacing. I hadn’t slept in my bed for seven months, choosing to work on the sofa by candlelight where I would accidently-occasionally fall asleep. I spent a lot of time checking the flat, alert to every sound: scared of fires, burglars and tiny muffled creaks. I acquired (and ignored) six parking-tickets, because somebody was parking in my allocated space and I didn’t have the social skills to challenge it, nor could I overcome my ‘uncertainty anxiety’ in order to give myself a full set-of-instructions to pay the fines.

That is probably why they did it.

Then it was my 31st birthday and everything crashed.

I could not cope with the thought of Jack coming into my flat but he insisted.

He, nor anybody, had been allowed inside it for months.

To the left was the bathroom, the cleanest room in the flat, save for the dogged-mould coming in from the roof-hatch and developing beneath the laminate flooring. Straight ahead, my bed room door remained firmly shut, as it had been for weeks. We walked into the lounge. A chill licked our legs and there was dampness.

It was desperately cold.

I looked around as if seeing it all for the first time.

The sofa, where I had been sleeping and working for the past seven months, was covered in blankets, a perfumed-pillow and a king-sized brushed-cotton, winter duvet. My hot water bottle was there, waiting to be filled, and Jack went to fill it up in the kitchen. My heart sank as he neared the sink. He didn’t flinch when he saw the pile of neglected washing-up, the tea-stained work tops or the collection of empty wine bottles that had filled a whole cupboard, and were now overflowing onto the floor and the preparation space beside the sink.

Don’t tell anyone that this is what I have become.

I was struggling to understand money. My car needed fixing. My car had been clamped because it wasn’t taxed. I had lost contact with nearly all of my friends. I had a list of jobs to sort out with the bank. I wasn’t repeating my prescriptions. Things that were not part of my plan-for-the-day couldn’t be processed, and my priorities never included myself. I had to fight my own brain to do simple, every-day tasks like open-the-curtains, wash-my-clothes, and answer-a-text. I could not find the flexibility in my mind to deal with unexpected traffic, weather, phone-calls. I couldn’t do anything outside of my ‘focus’ unless it was instructed, and nobody was instructing me about my money, my health, my car, my routines, my housework: it was all a secret-mountain.

I beat myself up in the mirror.

You are alazy, useless, broken, odd, selfish, difficult, lonely, disconnected, fake, burdensome accident.

I didn’t know then that I am Autistic.

My inflexible-brain ‘hyper-focusses’ on one thing at a time. It doesn’t know when to stop. It won’t stop. It doesn’t know when I am tired. I have associated obsessive-compulsive disorder. My day must be carefully planned from start-to-finish so that ordinary things get done, and any ‘extras’ or tiny-little changes or differences cause anxiety or cannot be processed at all. I zone-in on one-thing when I am getting ill. I work harder: I am working on this. Interestingly, on my best days, I can adapt to the unpredictability of life a little easier. But I cannot change my brain.

Try and get some sleep,” Jack said, “and I’ll watch over the flat tonight.”

I will never not be autistic, but I have learned a lot since my diagnosis. I know that I am a bit like a robot and I need short, clear instructions: but there are many things that I can instruct myself to do for the hours, days and weeks ahead, now that I am finally getting to know my brain.

That is my limited understanding of executive functioning.

Alexa, dim the lights.

Born on the ‘Wrong Planet.’

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Autistic people experience the world differently to non-autistic people.

For us, the world is intensified. Colours. Feelings. Tastes. Details. Temperatures. We can be hyper-sensitive to noise, lights, touching. This is not good, bad, better-or-worse… but it is very draining, and everyone on the spectrum is differently-sensitive too.

Everybody needs time-out from this fast-paced, frantic, modern world occasionally: to have silence, to metaphorically ‘press pause,’ to scream SHUT UUUUUUP…. this is normal. The world is not really built for autistic people however, and there are obviously consequences to this.

 A sensory ‘meltdown’ is like an anxiety-attack caused by too-much-world. It can stop you from being able to sense your own body’s signals like pain, hunger, the need to go to the toilet. It can make you sick; it can make you ‘shut down’ like an overwhelmed computer, unresponsive. It can cause physical pain; it can make you slur your words; it can make you disorientated; it can make you depressed. The more you ‘mask’ your sensory-demons though, the worse the consequences will be… you won’t win.

 It has taken 30 years of coping and ‘covering-up’ to realise that this is what has been happening to me all my life, and it is only one ‘star’ in the vast cluster of ‘stars’ that makes a ‘Humalien’ brain… How can I not have known?

 ***

It is my 31st birthday at the Bellemoor pub.

Someone speaks into a microphone. There’s a band playing The Beatles in the background and many close voices. Close yet indecipherable. Glasses clink together and clunk back onto the table. Laughter. Chair legs scratch the floor and the half open fire-exit door bangs open, closed, and open-closed, letting in the freezing January wind.

There is too much noise.

Noise feels hot.

It scalds the edges of my skull or something.

My pounding heart pumps lava-blood around my body hard and fast.

I cannot breathe.

Suddenly I am a volcano. Building up to a ‘meltdown’. Shaking, sweating. Where does ‘loud’ start? Does it start sooner in me than in other people? They seem to like the noise, they talk over the noise, and they make the noise noisier.

***

I am in John Lewis, about to sing with Sing Now Choir.

There are Christmas lights hanging from the roof through the centre of the store, flashing erratically. Stressed shoppers are going up and down the escalators, bustling, lefts-and-rights, distracting-directions. There is Christmas music playing. Father Christmas is shaking a bucket of money. Choir members are jostling in to lines and crowds are forming. Someone is making a store announcement as Jack asks me to “press play” on the tracks and the background ‘din’ of ‘department store’ is vibrating my brain.

I walk away from the choir.

There are tears of failure: there is pain down both legs; there is the contradictory impulse to scream over the noise and press my hands against my ears at the same time. There is the voice inside saying that this is not socially acceptable behaviour. There is the knowledge that this will result in a day or two of exhaustion; the subsequent cancellation of plans, guilt, decreased confidence, isolation, shame, pain, fear and fury.

***

Autistic people develop protective responses called ‘stims’ that they may do in order to calm-down over-stimulating situations. These vary from person-to-person, and can include things like: hand-flapping, rocking, thumb-sucking. Some non-autistic people find this socially-strange, they might tell you to ‘sit still’ or give you a ‘funny look.’

When autistic people try to suppress their stims to ‘fit-in’, i.e. by sitting on their hands, it can reinforce stress and later make the stims more self-injurious: scratching skin, head-banging, hand-biting.

Stims and meltdowns are the things that can ‘blow-your-cover’: the uncontrollable giveaways that make people think: ahh maybe she is autistic

But life on this planet would be easier for autistic people if their ‘stimming’ behaviours were more understood, accepted and allowed. Unfortunately, society is more inclined to cure Autism, than accept it.

‘Light touching’ can be distracting, startling and painful for a person experiencing a sensory-overload, but weight and pressure from a (permissible) hug, a weighted-blanket or a pet is extremely grounding, it slows the heart. (YouTube: ‘Grey’s Anatomy Big Hug’.)

Common triggering environments for sensory-overload are: cinemas, theatres, public toilets, shopping centres, public transport, crowds, birthdays and Christmas, and these (and any activity really) need VERY careful planning/routine and ‘sensory breaks.’ (It can be alienatingly-hard though, to need and take ‘time-out,’ when the people around you don’t require that.)

Sometimes anxiety in a person with sensory ‘abnormalities’ can look like anger, rudeness, or just an absolute silent-shutdown, but it is really just desperation and perhaps a frustrating inability to explain what is happening in that moment.

Sometimes even our thoughts about the world are just really, really loud.

Sensory overload is not only a side-effect of Autism, but anxiety disorders too. A terrific description of this can be heard in the lyrics of the clever song ‘Quiet’ by Tim Minchin, from Matilda the Musical.

Why don’t you give it a listen?

 

Can You Make Friends If You Don’t Know Who You Are?

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The psychiatrist thinks I am Autistic

But I don’t want to be Autistic; the only Autistic people I know are boys-under-ten and I am a thirty-one-year-old-woman. His words flick a switch that transports me back in time.

I am four-years-old at a playgroup in Shirley. The other children are peculiar: they are ‘cooking dinner’ and ‘talking on the phone.’ Someone should really tell them that it’s not real food.

I am five now, and in primary school. Nobody has taught me how to make friends yet, but I’ve had a go on my own: I like the boy called Henry. He has splints on his legs, a patch over one eye like-a-pirate and a trach in his neck that makes him whisper. Every lunch time I sit in the middle of the carpet and cry desolately a) because I am over-tired and b) because my teacher’s assistant goes home at lunch time and I can’t understand why.

The teachers have said I am not allowed to play with my brother at lunch time anymore.

I am nine and I can make friends but I don’t seem to be able to keep them, which feels even worse. I watch them, I copy them, I try really hard to like the things they like and I do whatever they say, but we just don’t connect. I am better alone. I don’t know my own favourite colour, favourite song, or favourite food but I know everyone else’s off-by-heart. I sit inside and re-read Jane Eyre to my friend Reuben, he has a wheelchair but he can walk in swimming pools.

I’d like to change my name to Jane Eyre.  

I am eleven and I am starting a girls’ secondary school called St. Anne’s but all the other children I know are going to Romsey School. I am completely alone: I don’t mind that at all, it’s just that girls are somewhat alien to me. There’s a group of girls in my maths class and they are ‘popular.’ They’ve grown out of things that I still like: they walk differently down the corridor; they wear their uniform differently; they talk differently; everything they do is different to me but I long to belong with them.

That night, I write them a letter in which I list all the reasons why I would be an excellent friend to have: I am thoroughly-reliable; I am loyal; I am honest; I respond well to direction.

Quickly, they conclude that I am not-worthy of being a part of their group, so the answer is “no.”

They shuffle away.

That’s when I stopped eating.

There must be something wrong about me: some sort of malfunction stopping me from quite-fitting-in. I am inaccessible. I wonder if I am a nice person. I don’t really mind alone-time, I like it and need it. I like cycling around the birch-tree outside my house, imagining what I’ll call my children when I am older. I like bouncing my orange ball up and down the garden path as a write animal-stories in my head. I like reading and running and thinking about song-lyrics. I like teaching myself how to play musical instruments and choreographing floor routines. I like fixing things and finding out how things work like brains, cranes and hearts.

But if anyone asks I’ll say “I-like-hanging-out-with-friends-and-going-to-the-cinema.”

I’m fourteen and I’m bullied by a girl who calls me ‘Mousey’ but I don’t want to talk about it. The one good thing about it is that it’s making me work harder in the gym at lunch times.

I am sixteen and I’m hyper-focussed on passing my GCSE’s but I can’t cope with my own conscientiousness. I am clever until I have an exam paper in front of me. My ‘cohort’ are choosing between going to Barton Peveril College or Peter Symonds College. They are both huge and prodigious colleges; so many rooms, so much movement. I decide to stay at St. Anne’s Sixth Form College where there are twenty-students-maximum and five-in-a-class: quiet, normal, familiar.

I am eighteen and off to University and after a lot of thought I decide I am going to smuggle-in my cuddly toy cat called ‘Anxious.’ On my first morning in halls I get up extra-early, shower, get dressed, make-up, open my bedroom door wide and sit on the edge of my bed in silence with my back-pack on my back, waiting for the other girls to get-up for the canteen breakfast.

I am not quite sure how to be.

They laugh at me.

Some of them roll out of bed and rock-up in their pyjamas: they are friendly and beautifully comfortable in their skin. I feel foolish because I expect none of them had laid out their clothes, practised appropriate sentence-starters in the mirror or slept with their breakfast-cards under their pillows.

Two girls, both called Lindsay, make friends with me and they are complicated. Lindsay-one manipulates me into being in a relationship with her boyfriend. Apparently he likes dating two-girls-at–a-time because “once you have an ice cream with sprinkles on you don’t go back” but I’ve got to keep this a secret. Lindsay-two has a rat called Dingo that follows her everywhere, but according to Lindsay-one she “wants to be [my] only friend, and tries to cut-me-off from everyone else.”

“Does this dress make me look fat?” Lindsay-one had asked one Friday night. “Not at all,” I had replied, “if you are overweight it is hardly the dress’ fault?”

Everything is bewildering apart from my boyfriend.

He is simple, chilled-out, interesting and god-does-he-make-me-laugh. I could talk forever about him.

Despite delicate times, I became a teacher at the age of 22, a really good and passionate one. I joined Love Soul Choir in my free-time to have a work/life balance and to meet new people because I’d overheard someone in the staffroom say that “that’s what functional people do” and it was one of the best decisions I ever made in my life.

“Tell me about friendships throughout your education” the psychiatrist says.

“There’s never been any one I haven’t liked…” I explain “…there’s even been many that I have loved…. I never forget a person: I think of them; I wish good things for them, I know a lot about them because I listen, and I watch, yet the more I interact the lonelier it feels.”

I think that’s why I like cats.

He listened, interested by the fact that many of my most successful friendships have been with people who are very obviously physically different to me. He said that it was “something to chew over.”

I do try and interact, but when someone talks to me I feel almost frozen-to-the-spot, it’s hard to listen and understand at the same time, and when it is over, I am left with the nagging paranoia: Did I respond correctly? Was my facial expression right? Did I talk too much? Too little?

The psychiatrist thinks I am autistic… I told my mum over coffee… he is referring me for assessments.  

She wasn’t a bit surprised.

Perhaps this is the start of getting to know who I am.

Why I Think My Cat is Autistic.

img_4182Saffie-Cat and I moved house recently.

We didn’t want to lose our Bluebell House, but we needed to move in with my family for a little while.

She was born on the first anniversary of my gran’s death and she has bought joy back into my life without knowing it. She is comforting and consistent; her fur is a silky-smooth black and soothing to touch; when she sleeps on my tummy the weight of her relaxes me. When I look into her amber-eyes I feel loved because I am the only one she will make eye-contact with for any long stretch of time, and vice versa, and that is a big deal.

But it wasn’t until we moved that I realised that she is Autistic.

The change disturbed her.

She spent three days squashed down the side of my bed, against the wall. I don’t know how she managed to get down there, the space was so small, and her little scared eyes would stare up at me and break my heart.

Gradually, Saffie ventured out and began to explore on her own terms. I tried to make our bedroom look and smell the same as my bedroom at Bluebell so she could feel ‘right.’ We like fresh-blossom room scents and dim mood-lighting. We like the feel of a certain brushed-cotton duvet cover and blanket, and the aura of gentle colours.

We like it when things stay the same.

Most people do. Let me rephrase that… we feel safe and well in this changeable world when we know that certain things will be staying the same.

For the first two nights, Saffie didn’t eat or sleep. Changes upset your feelings and your tummy. When one thing changes it is hard to remember that not everything has changed: it is hard to remember that your friends still like you; your hobbies, thoughts, behaviour and beliefs are still the same.  You still have the same doctors’ appointment booked and the same book you’re halfway-through reading. But when you have Autism, it takes ages to remember all of this.

Slowly, Saffie remembered that she likes to eat chicken-in-gravy at five-o-clock in the afternoon and she likes to fall asleep in the corners I make with my bent legs when I sleep on my side. She remembered that she likes watching TV, chasing ribbons and drinking water from taps. She remembered that she doesn’t like being picked up but she does like to always be close-by and she loves a cuddle, (on her terms). She remembered that she doesn’t eat anything unless it is put in her cream-kitten bowl; she doesn’t like having her claws clipped but she does like waking me up at four-on-the-dot every morning by licking my eyes and pawing my face.

Saffie stayed in my bedroom for about a week before she was bold enough to meet the other cats in the house.

Although she is a loving cat, interactions with others can sometimes be traumatic: being around others that look like you, but don’t think like you, can highlight your cognitive differences and cause anxiety, misunderstanding, a decreased sense of worth. Saffie wanted to be friends with Merlin but he ran away from her because he is a cool-cat who associates with the ‘street-wise’ cats. He doesn’t understand her and he doesn’t want to, which is fair enough. So she tried to make friends with Molly by licking her, which was apparently not-socially-acceptable because Molly responded with a hiss and a growl.

Saffie ran back up to my bedroom to be by herself instead.

She doesn’t quite know how to make friends and the older she gets, the more isolated she feels.

She used to have a friend at the Bluebell house called Dobby. He was easier for her to get along with because he was a ‘boycat’ and he was older. For some reason, she gets on better with boys. Dobby was also a creature of habit, stuck in his patterns: she would follow him, copy him, learn from him and she learned to be herself around him. Moving away from him has been another difficult change to adapt to.

She needs space and time and plenty of silence to ‘recharge her batteries’ …as they say.

Noise triggers Saffie’s ‘catxiety’ and she can’t concentrate or function when there are new or loud noises or if there are too many noises at once. I am sympathetic when she is distressed by noise because she can’t put her hands over her ears to block it out and it can really make your brain race. Her other senses are heightened too, touch and smell, but some things that bother other cats don’t bother her at all, like dogs and danger.

She doesn’t like weather though.

Weather sometimes causes us uncomfortable sensory feelings or forces us to change our plans: people can do that too. We did not like the snowy weather but thunder and lightning is the worst: it is loud, unexpected and you can’t control it. I sometimes catch Saffie looking out of the window at the weathers, like an outsider looking out into a world she will never truly understand.

Especially on fireworks night.

Sometimes, when things get really overwhelming, she goes absolutely wild and darts about upstairs like a caged-bat, chasing imaginary things and shadows to ‘let off steam’.  Sometimes she’ll sit and knead my jumpers or blankets as if pushing the anxiety out of her body through her paws. Is this her version of stimming?

This week Saffie went outside for the very first time.

As her little paws touched the concrete she paused… it felt… new. A piece of fluff flew about her face like a fly and she chased it with her eyes. Confidence grew as she walked through the grass stopping every so often to glance back at me. A pigeon clapped his wings overhead and she cowered, then ran toward a tree: she clawed the bark and rubbed her face against the trunk’s twigs. After twenty-minutes and a brain full of new sensory-stimulation, she pounced back into the house and up the stairs to our bedroom, our sanctuary.

That was enough.

There she slept for four hours, overawed and exhausted by the things she had touched, smelled, heard, tasted and seen all in one gulp. She was probably also over-thinking her interactions with the other cats too. I say ‘probably’ because of course, Saffie never expresses her emotions. I can tell that, when she is sad, she goes off her food, or she hides. When she is happy she slowly blinks as she purrs, or falls asleep across my neck like a silky-black scarf. It is quite hard to know about other feelings besides happiness and sadness: sometimes you have to watch and guess and look deeply into her eyes to see if her pupils are enlarged or not. I think she can identify feelings of hunger, tiredness, when she needs to use her litter tray, as long as there’s not too much else going on.

Saffie is safe and solitary, there is no doubt that she likes me and my company. I know her. Once I even bought a black-cat dressing-up costume to wear to a social so I could be her.

I didn’t have the confidence to go as myself.

In the end I didn’t go at all.

I just stayed at home with Saffie.

Writing is my creative and therapeutic way of educating myself and my friends at the same time. Thank you for keeping me confident and supporting my blogs.

Gastroscopies and ‘The Unexpected.’

img_3440Apparently I have a “significant vitamin b12 deficiency.”

In short, my GP says I need two b12 injections a week because my body is “not absorbing properly” and it is making me unwell. Before I can start the injections however, I need to have a Gastroscopy at the hospital, because Dr. Gabi wants to rule out a Gastrointestinal Disorder or a bleed.

Not only do I have Crohn’s disease and Ulcerative Colitis in my immediate family, it is also well documented that Gastrointestinal Disorders are “among the most common medical conditions associated with Autism.” So, with ‘encouragement’ from my friend Lesley, I book the Gastroscopy.

During the two-week build-up to my appointment, I find myself relentlessly, foolishly YouTubing Gastroscopies and watching them back-to-back online. I view so many that I could probably perform the procedure myself if you wanted me to! Surgery has always been one of my ‘special interests’ (exacerbated by my great Grey’s Anatomy binge of 2016) but I have never had any kind of procedure in hospital before myself.

Something like fright became caught in my chest over the next few days, and was taking my breath.

I manage to identify that I am not frightened of having the Gastroscopy at all: a Gastroscopy is a simple, routine procedure. The explanation for my anxiety is sensory based and a fear of everything the internet ‘can’t’ tell me.

However daring I want to be, if my brain is receiving too much sensory information too quickly, I experience a ‘sensory overload.’ This can manifest as an anxiety attack, physical tummy and leg pain, sickness or a complete ‘shut down.’ Autism amplifies everything: Pleasure. Pain. Empathy. Detail. Colour. Sound. Everyone on the spectrum is differently-exhausted, but ‘sensory overload’ for me happens when I mask my condition too much in order to ‘fit-in’ and ‘keep-up.’

The fear of this happening in the hospital is following me everywhere I go.

So my friend Lesley phoned the Endoscopy department at the Royal South Hants hospital and asked them if she and I could visit the hospital before the date of my Gastroscopy. She explained to the nurse that I have Autism and sensory processing difficulties and that it would be helpful if I could come and see the nurses, the waiting room, the procedure room, the recovery ward and all of the equipment in advance of the procedure, so that I could visualise everything and know exactly what to expect.

I was stunned at Lesley: for having this idea and then for making it happen for me. There is no greater friend than one who attempts to experience the world through your eyes and make things better for you.

The NHS nurse that Lesley spoke to was extraordinarily understanding, and she organised a date for us to have a tour of the department led by a nurse from the Endoscopy team.

***

We arrive at the hospital for the tour, and I am an owl, observing and memorising.

I memorise the walk from the car-park, through the main doors, down the corridor, round the corner, to the lifts. Up in the lifts we go to the first floor where you can’t get lost because the signs are too clear. The waiting room looks like a normal waiting room: there are chairs around the sides, the TV is on but the sound is off. There are magazines on tables, a long window looking out to the hospital-roof and a few posters on the wall. One of the posters tells you what-to-drink and what-not-to-drink if you want a healthy bladder. A man comes to greet us: he is a nurse and his name is Rob Pattinson.

He talks mainly to Lesley but that is okay because I am concentrating on remembering what things look and sound like. First, he shows me a little office where I will be asked to sign some forms and have my blood pressure taken; then he takes me to a room where I will wait and be cannulated; after that, we walk to the procedure room.

There is no bed there today, but I can stand where the bed will be.

 He tells me that I will lie on my left-hand-side and that means I will be able to see a little trolley of medical things and four posters on the wall that are too far away to read. He tells me that the doctor will be called Dr. Laing and that he has been doing this procedure at least “eight times a day” for “longer than I have been alive.” He tells me that Dr. Laing will probably have two or three nurses with him: one will be monitoring my breathing and heartbeat, and the others will be taking notes or standing by my head.

I didn’t have any further questions. Everything I wanted to know had been addressed in detail. I go home content, confident, (secretly looking forward to it) and able to visualise what was going to be happening to me.

***

My Gastroscopy is at midday today and I haven’t eaten or had a drink since 5pm yesterday. I know that the doctor is going to inflate my stomach with air so that he can investigate it properly. I know the way to the department so I don’t need to consider the worry of being lost and having to ask for help. I recognise the nurses on the desk and they are expecting me: they tell me to sit in the waiting room (like they said they would.) The TV still has no sound and the poster is still telling me what to drink to maintain a healthy bladder. The nurse I met at the pre-visit, Rob Pattinson, comes through the door and calls the name “Claire,” but it is a different Claire, and that makes me confused, but he recognises me and says “you’re next.”

Things begin to happen fast.

Dr. Laing is there. He looks different to how I had imagined. He is asking me questions as a nurse clips an oxygen tube into my nose and around my ears. My whole body is shaking. Dr Laing is spraying numbing spray into my mouth. The internet told me that the spray is disgusting but I don’t think it’s that bad: it’s a bit like bananas and now my throat is definitely numb. Another nurse is injecting sedative into my arm and helping me to lay down onto my left-hand-side as the doctor tells me to bite on a blue mouth-guard. I think I am sedated before my head hits the pillow, although I am vaguely aware of a metal bowl by my mouth.

I remember holding a nurses hand.

***

Next thing, I was waking up in the recovery room and Lesley was there. I was grateful to have a friend caring enough to come up with a way, not only to enable me to succeed, but to succeed confidently and to be there when I woke up.

I was grateful to the accommodating NHS staff at the hospital for wanting this for me too, and for taking that bit of extra time to make sure I could be familiar with the routine and know what to expect.

I got thinking about thinking-around-corners, and realised that there are many more things that we can all succeed at if we go about them differently, creatively and with the right support.

***

No matter who you are, no matter what the barrier, things are ALWAYS possible.

Confusing Texting with Talking and the Consequent Anxiety.

img_4235       

“Yes. No. I don’t know.”

Some Facebook messenger conversations make me confused.

In my mind, friends are supposed to send messages because they have got a specific reason to. Perhaps they want to ask someone to go to the cinema with them? Maybe they want to a) tell them something funny b) ask their advice c) share information d) ask a favour? If the reason is not clear, or it feels like small-talk, then I find it confusing and quite traumatic. I then have to try and guess their agenda or ‘read-between-the-lines.’ Unfortunately, my brain does not process ‘small-talk’ very well. Partly because I find it pointless and partly because I am very literal. If you write “How are you?” I will write “Ok, thank you,” because that seems to be the socially acceptable response which other people expect and want.

I very rarely actually know how I am because I haven’t had the time to think about it and I can’t decide on the spot. I probably have many feelings all at once: I am sad because I am exhausted by nonsensical messages and happy because I am watching The Chase? Not to mention the dilemma that I often can’t connect the right word with the feeling.

But it’s not even a complete sentence….

How are you….? Christ. It’s like it’s just fallen out of your mouth.

What you surely mean to say is… “How are you still standing after that long day?” Or, “How are you at maths?” If you are a close friend to me and you ask me how I am, I will first think … how am I what? And then I will assume you don’t really care because my life has many different compartments. How am I supposed to pick the right one? ….Lol.

I think this is why I like cats.

If I ask you how you are, be assured that I want details, reasons, honesty and full-sentences. I want the whole story because if I didn’t really care, I wouldn’t ask. I am likely to give you some more information though, just to help you feel secure. For example… “How are your feet feeling after your long walk to the shops?” Don’t tell me that you are “Ok, thank you” or “Fine” because that insults me; it implies that you think I am as shallow as the small-talkers that couldn’t-care-less.

If you don’t have a concise reason for messaging me, don’t. Save me the anxiety of guessing what you want and inevitably getting it wrong. If you don’t bother with punctuation, or you rush as if you are writing how you would talk, I will assume I am not important enough for you to make an effort, and I see this as a personal put-down. I apologise for this, but because I am supposedly-normally a ‘high-functioning’ autistic (another ‘bone of contention’) I am constantly conscious of my short-comings and have a very low self-esteem. Having said that, you wouldn’t disrespect your employer with a bumbled, knocked-together text message, and I consider friendship to be far more important than a work relationship.

A normal text correspondence should be six messages long at the most. You cannot assume the person you are messaging has the time, energy and appropriate sensory surroundings to effectively sit down and write to you.

We are not Victorians.

Anything longer than six messages is a ‘discussion’, which is a spoken conversation or debate about a specific topic. This is why Alexander Graham Bell invented the telephone, giving people the ability to communicate even when they are not together. If you try and write as you speak things get very messy because writing and talking are different. This is not breaking news. Talking is freer and more personal and there are many helpful aids like facial expressions and body language that you can learn to read to help you communicate and to help you know when to shut-up.

Remember you are my friend, not a work man or the bank. Your voice is comforting to me because it is really you.

In some (rare) circumstances, when you can’t talk (and that’s not easy either) text messaging can be useful and can fill your lonely moments with comfort and company and I understand this. In these (rare) cases, it is important to make sure you communicate clearly with your words and think about what you write before you press ‘send,’ so that you do not cause unnecessary anxiety. Believe it or not, people with Autism are aware of their complications and the feeling of not understanding is isolating: it fills a person with self-doubt and hate which leads ultimately to depression.

Especially if the other person can see that there is a misunderstanding and just gives up.

When a person tries to write how they would talk, it is impossible to imagine what their face is doing or what tone of voice it was supposed to be ‘said’ with. Although many people find it hard to read facial expressions, I do not. I analyse them constantly. It is hard for me to cope when somebody starts a ‘conversation’ with me by text but then gets distracted and goes ‘off line’ or starts a ‘conversation’ with someone else without saying a proper good bye because in a spoken conversation I might have sensed their boredom/distraction sooner and ended the exchange myself.

“Hey. You started this ‘conversation’… You have been expecting consistent responses from me and now you have moved-on without saying good-bye. What does that say about your respect for me as a person? How am I now? Thoroughly pissed off!”

Joking aside… if you open a ‘conversation,’ I am building myself up to participate, which takes a lot more nervous energy for someone like me even with writing.

If you want to text how you talk, then the same rules of decency should apply. If I walked off halfway through a spoken conversation with you, you’d rightly call me rude, and that’s what I think of you when you bin-me-off because you got-another-text. Don’t forget I have probably stopped what I am doing to reply to you because this is not just a text message, this is a ‘conversation’ so what am I supposed to do now… wait? What about my day? ‘Conversations’ have a clear beginning, purpose and ending. It is only acceptable to disappear in a ‘conversation’ if there is an emergency or you have fallen asleep, and don’t even consider texting and driving because that really is bat-shit-crazy.

Normally, long messaging sessions ruin my day because they make me feel inadequate and stupid. If you text me saying “Are you spending the evening with me?” I don’t know whether to say yes or no because I don’t have any clues there about what YOU want, and so, because I mask my Autism in order to have friends, I’ll probably say “no,” just so I am not a burden. I am reminded now of why I didn’t raise my hand to answer questions in primary school, because I was afraid that I would misunderstand, answer wrongly, and my face would turn red. And we wonder why mental health and confidence problems are prevalent in some people on the Autism spectrum.

My message to my friends is this: don’t change but be mindful. Carry on as you normally would and interact however you want to. You are you and I am me and the most important thing is that you are in my life. But if you really want me to succeed in a text messaging conversation with you, be patient and help me. I am thinking about you, even if I am not initiating a conversation and I do want to tell you how I feel when you write “How are you?” perhaps we can find a different way?