Why is it so hard to get dressed?

Why is it so hard to get dressed? is just one of the many questions I ask my brain every single morning of my life. Now that I know that I am autistic, (and have taken time to try to understand what autism means,) I have finally been able to identify and problem-solve some of my lifelong issues with clothing, and ease the shame that exists alongside this.

This is great progress – although it doesn’t make the issues disappear.    

The non-autistic brain allows people to filter out the sensory feeling of clothing on their bodies, whereas the feeling of clothes on my skin is something I am conscious of every second of the day.

Clothes never sit naturally and comfortably on my body.

Tags, seams, and restrictive clothes cause physical pain to autistic people like me because our brains our hardwired to receive the sensory information differently. But rather than wear the same trusty tank top and leggings each day, many of us will fiercely mask and deny our needs in order to fit-in with what other people are wearing in different social circumstances; this is what we have trained ourselves to do our entire lives but it can come at a cost.

If the fabric is ‘wrong,’ it is like having needles sticking into your arm all day. Or like having an intense itch wriggling through your body that you are forbidden to scratch. Taking off the clothes would solve it, but I’ve learned now that that would be socially unacceptable: you’ve got to just endure it.  

These intolerances are distracting. They stop us from being able to think clearly, process what others say to us, communicate in the moment, know what to do and when. They contribute to meltdowns, delayed meltdowns, and deep shame – especially if we are unable to identify the specific trigger of the overload and manage it quickly.

Autism is a communication disorder, which can mean millions of different things. In this case it means that, not only do I experience touch and pain differently to the non-autistic community, my brain will fail to communicate to my body where the pain actually is. When the seam of my tights is digging into the tips of my toes I know that I am distracted and hurting, but I cannot identify the cause in order to manage it.  

Clothes can be difficult to cope with because of sensory processing differences in autism, but they can also be hard to manage due to executive dysfunction. Executive functioning, in this instance, refers to the ability to manage and prepare clothes according to the weather, the temperature, the occasion. It refers to the ability to go shopping, find clothes that match, find clothes that fit properly, put clothes on in the right order, and keep them neat throughout the day.

Many non-autistic people can ‘just do’ these things but my brain doesn’t allow me to, especially during periods of burnout. When I do manage this, which takes a lot of brain energy, you can guarantee my clothes combinations will either be socially unacceptable or a massive challenge for my senses.

I must wash and prepare all of my clothes for the week on a Sunday, and hang them up in the order that they will be worn, because making decisions about clothes right before I need to wear them causes a great amount of anxiety. Anxiety that was not present at all during the months of lockdown when I was working from home in a comfortable top and pyjama bottoms. I need to know, in advance, what I am going to be wearing each day for work, and I need to check it several time before I am able to fall asleep at night. It is quite exhausting, but if this doesn’t happen, there is a high possibility that I will not be able to function enough to leave the house at all.

The anxiety is partly there because of self-awareness and the tendency to study and analyse everyone else – comparing myself to other people and the clothes they are wearing. When I notice that people can wear lots of different kinds of clothes, match different shoes to different outfits, or wear a different pair of shoes to work every day, I feel in awe of them. I can only manage one pair of shoes and I wear that same pair with everything. Some people never seem to wear the same outfits twice, and others know how to combine their clothes differently for variety. Teachers don’t have to wear a uniform which would make life easier in a way.

Not everyone values clothes the same way, but when you want to be able to be creative with clothes, it can bring up a lot of thoughts that are harsh on your self-confidence: why can’t I manage and wear lots of different types of clothes? Why can’t I adapt my clothes spontaneously according to the weather?  Why do my clothes hurt my skin? Why don’t I look like …them?

            I spoke to a group of autistic females from the online autistic community about their experiences with clothes to find out whether they have similar issues to me, and I received over 100 responses. Here are some of them:

When it is windy I always wear a hat or a hood. I cannot stand to feel the wind blowing through my hair – that’s way too much sensory input for me. Some days I am more tolerant than others depending on the rest of my sensory input. On the worst days, the weight of my clothes can send me into sensory overload.

The change in season from summer to autumn is the hardest for me because I can’t wear long sleeves, high collars, or socks. I can only wear a certain brand of tank tops and leggings. The thought of sock fabric against the carpet is unbearable to me, but I have recently found out that I am okay with ultra-soft, smooth slipper socks.

If I get very stressed I suddenly feel my clothes all over me, and it feels suffocating. None of my clothes have tags and if they did I would cut them all out. I do hate bras and underwear. I have a very small collection of clothes that I wear inside the house, but I pretty much suffer the entire time if I am away from the house or at work.

Clothes management is exhausting. I am always accidentally wearing clothes that aren’t appropriate for the weather; it could be 102 degrees outside, and I’ll be there in joggers and a hoodie. You can guarantee that when you find something you can bear to wear it won’t be fashionable or socially accepted.

I have specific clothes for various things. Today is a pyjama day, but whenever I go shopping I wear loose jeans and my Jurassic Park t-shirt.

I wear black yoga leggings and a tank top every single day. In the winter I just put a hoodie over my tank top. If I had to go to work it would be a nightmare because these are the only items I can wear due to my sensory processing disorder.

I struggle with clothes because I don’t regulate temperature well. I just wear very high-waisted leggings – so they are hug-like – and loose, grandpa cardigans.

Clothes bother me in so many ways, the texture, the weight, tags, bold patterns, seams etc. I am constantly conscious of it all and it is draining. Texture and fit is far more important to me than style and colour. Shoes are the worst challenge.

I have really bad clothing intolerance. When I find something comfortable and soft I buy it five times. My clothes have to be too big or I feel them getting tighter and tighter throughout the day as my tolerance depletes, like my body is being squeezed.

My Autism Story: Too Much World

If I had asked you, four years ago, to imagine someone on the autism spectrum, I doubt you would have imagined me. I wouldn’t even have imagined myself. You cannot see autism – especially not mine. Autism is a neurodevelopmental difference in the way the brain functions. You can’t see my brain functioning, but it affects nearly everything about me to differing degrees. My personality, my experience of the world, my memory, my development, the way I communicate, how I think, even how I move.

I’m going to tell you about the first-time autism was ever mentioned to me, as a potential diagnosis. My friend was at the appointment with me. He was supporting me in a session with the psychiatrist at mental health services. He was my voice on this difficult occasion, my second pair of ears. After trawling through medical notes and interviewing me for two hours I am diagnosed with depression and anxiety, OCD, Bipolar Disorder, an “unspecified trauma disorder” and “potential autism spectrum disorder.” To me those words were like enormous suitcases. They were so heavy. But nobody was helping me open and unpack them. The psychiatrist was thorough and clever. His questions were different and probing, and they strayed from the standard mental health questionnaires. He was assessing my use and understanding of language, and body language, but I had no idea why.

I can’t have autism.

I can barely bring myself to say the word.

I can’t have autism. I am a girl, a woman, a teacher. I am 30. I don’t want autism. How will I ever be able to tell people that I have autism?

The psychiatrist told me to do some research about autism in girls while I wait for the referrals, so, when we got back to my friend’s house, we looked online. I found Samantha Craft’s checklist for Asperger’s in females https://the-art-of-autism.com/females-and-aspergers-a-checklist/. The checklist was separated into ten sections. The sections focussed on deep thinking, innocence, escape and friendship, co-morbid attributes, social interaction, being alone, sensitivity, sense of self, confusion, words, numbers and patterns and executive functioning. My friend told me to read out all of the attributes, and that he would say “yes” or “no” depending on if it applied to me. We made cups of tea and I started to read the list, keeping in mind that this is a springboard list, not official diagnostic criteria. Something changed in my friend’s face, like it always does when he has figured something out.

“Nearly everyone I know can relate to these attributes,” I said.

We arrive at the section called co-morbid conditions. This time I am okay about relating to so much of the list. The accompanying diagnoses I had received earlier today may not be separate suitcases to be carried but included beneath the ‘umbrella’ of autism. Somehow that feels more manageable. But I was now falling through the net with the two different services. It’s a familiar story. 

My autism assessment kept being pushed back by six months at a time, and the community mental health team kept cancelling my care. They said they couldn’t support me with mental health until I had the results of the autism assessment, but I needed them. I accepted their words – as anyone with a poorly brain might – by concluding that I just wasn’t important enough. 

I was privately diagnosed with autism spectrum disorder in august 2018, with the support of my parents. The diagnosis did not suddenly change my circumstances and make me better, but so much of my life suddenly made sense. My strange and exhausting intensity in social situations. My weird obsessions that never go away. My failed attempts at friendships. My shy awkwardness. My tendency to absorb other peoples’ emotions as my own. The peculiar behaviour of my senses. The way my brain hears and interprets other peoples’ words and intentions. My tendency to panic, to punish myself, and remain non-functional, in secret, for days afterwards. All of these things, which I’d always put down to ‘badness’ – they were just traits of autism.

But the autism spectrum suddenly seemed so lonely. And everyone around me seemed vibrant, natural, open, clever, and correct. All the things that I felt autism was not. I took the shameful assessment results, I folded them, and I placed them in a box under the bed. I promised myself that I would never, ever talk about autism to anyone.

There are many stereotypes about autism that mean that people who don’t fit the stereotypes slip through the net. We aren’t Rain Man; we aren’t Einstein and we aren’t in residential care or special education because of higher support needs or a co-existing learning disability. You might assume that I have ‘mild’ autism but that’s only because you experience me mildly. My autism is quiet and hidden, and I work hard to keep it quiet, keep up and fit in, but I don’t experience it mildly.

To the world, my brain is disabled. But it isn’t disabled from functioning – it is just disabled from functioning in the way society expects it to. The more I’ve learned about it, the more I’ve realised that it doesn’t have to be like this. Autism comes with many, many challenges, but it also comes with so many individual, creative and unique strengths. My autism makes me insanely passionate about the things, and the people, I care about, and it makes me honest enough to communicate what is real and what is right without social boundaries.

I made several attempts to return to full time work as a primary school teacher since becoming ill four years ago. Teaching is my special interest. I’ve still not fully accomplished a full return to work yet, but I am working hard as a teaching assistant, and just about balancing my desire to work and live independently with my complicated health and appointments. I am proud of this. Only 16% of autistic adults are in full time work and I’m determined to be one of them.

On one of my attempts to return to work there was a girl, sitting on the carpet in front of me, sorting toy farm animals into lines. I recognised things inside of her, that are inside of me too. Later I found out that she had received her diagnosis aged two. I remember being overwhelmed at the idea of her future. This tiny child that I don’t know yet, having to go out and face a world that doesn’t accommodate her – that treats her like she is of little use. She looked at me and gave me a funny little smile and I knew that, as she aged, it was only going to get harder for her. The gap between her and her peer group would grow and grow and grow. What is she going to do if nobody stands up for her?

I didn’t choose this, but I have knowledge now, and can’t help but feel a responsibility to pave the roads that these children will walk on. The roads will be bumpy at first, but, when they are older, the children can help me to smooth them. Until one day, there will be children born that never knew that the road was bumpy in the first place.

In that moment I decided. I am taking the papers out of the box from beneath the bed and I am going to find someone in the world who will read them with me and help me to understand what they mean. My friends helped me to find that person at The Red Lipstick Foundation who now works with me through Autism Hampshire. This isn’t about me at all. This is about learning through therapy, and making progress, so that I can help all the others. That is the thought that sparked a determination inside me, that I really thought had extinguished forever. 

I started to write little notes to take to appointments to take the pressure off talking – which is something I find impossible to do at these sessions. Quickly, I learn I can communicate better by writing and by drawing things. I see – in the eyes of the people I am communicating to – relief, that they are starting to understand me. The notes, lists, and drawings I was making, to help me communicate in appointments, were also starting to help me with my own understanding of autism and how it interacts with bereavement and mental health disorders. That progressed to me writing a few blogs to share online. To my surprise, many of my friends and family were interacting with my blogs. They were even praising me for it. They changed the way I thought about myself. They started to take the shame away from my autism and made me feel like it was ok to be honest, about who I actually am, for the first time.

The confidence I have in my book, Too Much World, has been given to me by my family, my friends, my reader. If it weren’t for the support I have felt from these amazing people, autism would still just be one big, heavy suitcase to carry around, in the hopes that no-one would ever know.

Blog 7: Autism Acceptance Week, April 1st – 7th, 2019

Autism and Emotion.

It is as difficult to explore emotion in autistic people, as it is in non-autistic people. Everyone is different. I have an autistic friend who is very emotional, expresses her emotions at the time she feels them, and adapts her life according to how she feels. Her autistic differences are more prominent in other areas of the spectrum.

I have emotions, because I am a human being. Everybody has a different relationship with their feelings, but the relationship I have with my feelings is confused and disconnected. Rarely am I conscious of my feelings, even physical ones. The concept of something so abstract is difficult for my brain to process.

This can be useful.

I am calm in a crisis, rational and logical. I am clear and focussed, and I get things done with pace and detail. I am reliable with a strong sense of social justice. I respond well to direction. I am never too busy, too tired or too sad to help someone. I put other people first because I am intuitive to their feelings, and it is more comfortable for me to fix things for them, than think about how I might feel myself.

I can quickly simplify and solve problems that others find too complicated, because of their feelings about it.

It’s not that I don’t have the emotions, I have them intensely. It’s just I cannot identify them and respond to them with compassion, so I continue to function robotically, sticking to routines, as if the feelings are not there, even through traumatic times.

But feelings and unexpressed emotions don’t just go away when you don’t pay them attention. They are messengers, sent to help you know how to respond safely to situations, help you know what you like and what you don’t like. If you ignore them or fail to acknowledge them, they present themselves more physically, in the brain, in the body causing aches, or in sensitive organs like the stomach.

When I had depression and anxiety the conditions looked different in me. They were extremely physical. I needed help from mental health and bereavement services but they couldn’t access me because I was unable to verbally communicate my feelings, or connect the relationship between my mind, body and behaviour.

My understanding of emotion is visual, like an animal or a scale of numbers. It is in the lyrics of songs and in drawings, but it’s not in my mind. I cannot distinguish between sadness, excitement, guilt or shame etc. because I cannot see them. The question ‘how are you feeling?’ can sometimes feel threatening because I need help to know. Therefore, I will usually say a learned response like ‘fine thank you,’ or respond with, I feel….’ followed by an action/thought: ‘I feel like I should not have done that,’ or a sensation I have practically felt, ‘I feel prickly.’

I am working hard with therapy, to be able to access my feelings for the first time, and live a wiser and more balanced life with limits and boundaries.

It’s taken me thirty years just to learn how to know when I am tired. But I can notice it in another person within a second of seeing them.

This autistic vlogger has made a video to dispel the stereotype that all autistic people lack emotion and empathy. She is cool and worth following. https://m.youtube.com/watch?v=nSy1ZczpJQM

Blog 6: Autism Acceptance Week, April 1st – 7th, 2019

Autism and Communication

Sometimes, in a room full of people, I feel more like a chair than a human. I am somehow separate, like I am sitting in a snow globe, or a goldfish bowl.

In a room full of people I am the first to notice if someone looks ill, if someone looks sad, if someone looks different, if someone isn’t included or if someone needs something, and I fix it. My writing, and my fixing things for others, is my way of communicating. It is comfortable for me to do this because there is a clear problem, a clear solution, and validation from them afterwards that I have done the right thing.

Most people communicate verbally, and they use their body language, facial expressions and behaviour to communicate things to one another, but I do not function in this way. If you tell me the population of China I will know it. By the same rule, if you tell me that you like me, I will know it, but I cannot pick this up from your body language, facial expressions or behaviour towards me.

I only know what I am told, taught or practically shown. Facts and clarity are comforting even when the thing I’m being told is bad. Without facts there is no social imagination, just uncertainty, and this makes building friendships and relationships very difficult.

Adults rarely communicate with the direct clarity and consistency I need, to be able to feel safe and successful in conversations and relationships.

Because I’m acutely aware of this, I walk into every social circumstance in fear of misunderstanding, making mistakes and saying the ‘wrong’ thing, even when it is true.

I know that not everyone ‘likes’ honesty all of the time, but I don’t fully know when it is acceptable and when it isn’t. Lying is wrong, but it doesn’t occur to me to cushion any fact with extra layers of communication, when the blunt truth is such a comfort to me. I’m not great with sarcasm and sayings because I take them literally, and in the past I have mistaken insults for compliments. Basically, a lot of ‘normal’ communication is really abnormal to me, and it’s things people ‘just know,’ as if by magic.

So I am always “on-the-back-foot,” because, along with Autism, I also have self-awareness, and I care.

I say what I mean, mean what I say, and do what I say I’m going to do, and I always expect that is what everyone will do, but they don’t. You have to listen to, and understand, what is unsaid, just as much as what is said, and so I get lots wrong.

This song from the musical Dear Evan Hansen can explain the feeling better than I can: https://m.youtube.com/watch?v=NlHALdSTPX0

People think I’m shy but I’m not really, I’m just careful. People think I am anti-social, or that I don’t want to talk to them, but I really do. I love people with clear intentions and I have a lot to say, but I want to talk about all the things that are real to them. People think I’m blunt, but I’m really just saving them from the devastation of misunderstanding.

I’m best at listening, fixing, remembering, and following direction. This can make autistic people vulnerable to abusive relationships but that’s another blog.

This autistic women talks about friendship, dating and relationships in the following video: https://m.youtube.com/watch?v=_MA7o6FgPRU

Blog 5: Autism Acceptance Week, April 1st – 7th, 2019

Meltdown and shutdown reactions are different in all autistic people but they are always awful.

They can happen following sensory, information, communication, function or emotion overload.

Autistic people can work hard to learn their limits and triggers, but, since Autism is a social, communication disability, and the impact of other people can be significant, it is helpful for family and friends to know how to recognise signs and help prevent meltdowns and shutdowns, so that autistic people can be included in things.

It’s so important not to try to stop a meltdown when it happens, because this is masking. It just puts the meltdown ‘on pause’ and makes it worse and more dangerous later on. Stopping a meltdown is like waking someone up from a nightmare. Whilst meltdowns are horrible, they are the autistic way of releasing ‘bottled-up’ sensory and social stress, like a shaken can of coke. Once it starts, the body needs to see it through until it is ready to cope again.

Here are 15 things you might like to know if you want to support or include an autistic person:

1) It can help to visit new environments prior to an event, film the journey, look at photographs of the venue, and study maps of the places you are going to.

2) It can help to make detailed plans for outings, to know timings, to know exactly when things are going to end.

3) It can help to be continually reminded about what is going to happen next. If something changes, it is helpful to have the reasons for the change explained in detail so that they make sense.

4) It can help to take breaks and to be made to feel like it is okay to take a break, in a calm place.

5) It can help (for so many reasons that will take time to list) to know that you can use accessible toilets without judgement from others.

6) It can help to know that you can use noise cancelling headphones, or anything else that grounds or comforts you, without judgement from others. Many people have ‘stim’ toys, sensory aids and soothing items that help them regulate difficult senses by stimulating the soothing ones.

7) It can help if the people around us are not angry if we start to struggle with things. We are not trying to give you a hard time, we are having a hard time, and we absolutely dread it.

8) It can help to not be expected to communicate verbally when things are difficult.

9) It can help if people warn us before they touch us because light touches can be painful, whilst deep pressure and weight can relieve anxiety quickly.

10) It can help to be given time to respond to any new information, verbal, social or sensory. We will not ignore you, we sometimes need to juggle a lot of things in order to interact with one thing, and this feels pressured.

11) It can help if you give instructions, and communicate directly using clear language (i.e not too many metaphors, analogies, choices or questions.)

12) It can help if the people around us know and accept our ‘stimming’ behaviours if they are safe. These behaviours are like habits, but can be seen to be odd or socially strange. Stimming is subconscious, but autistic people might do it in excitement, in fear, or in an effort to calm an onslaught of senses. Behaviours can include rocking, hand flapping, spinning, sucking fingers etc. Harmful behaviours like scratching skin, banging head or biting, should be prevented but replaced with something safe.

13) It can help to sit or stay near to the exit of a venue so that it is easy to leave.

14) It can help to have a job or responsibility to focus on, so that the focus is not solely anxiety management.

15) It can help if the people around us know, that a meltdown/shutdown reaction is very scary, debilitating, and completely involuntary. The aftermath is exhausting on the body and mind, and the overriding feeling is shame.

All autistic people are different.

This song does well to explain how isolating Autism can sometimes be because of sensory and communication difficulties. It is relatable, and helps to explain that autistic people don’t develop mental health problems because of Autism, they develop mental health problems when people don’t accept Autism, and this can make us feel like bad people.

https://m.youtube.com/watch?v=86s_1hpX4Yc

Blog 4: Autism Acceptance Week, April 1st – 7th, 2019

Autism and Sensory Processing

Have a little look at this short video to start: https://vimeo.com/52193530

For many autistic people, the world is amplified, making them acutely sensitive to sounds, light, taste, texture, touch, colour, detail, movement, smell, their sense of self. Other autistic people are very under-sensitive to certain senses, making them crave them more.

I am very sensitive to sounds, lights and detail. I am sometimes sensitive to touch in times of stress. I am under-sensitive to the senses within my body: tiredness, thirst, hunger, pain, illness etc. I am soothed by smells, essential oils, scented body lotions, perfumes, flowers. I’ve been taught to seek out these senses, when things get unmanageable, and it’s important for everyone to create a soothing system to balance the drive and threat in their lives.

In my life I have been a successful dancer and gymnast, however getting my brain to tell my feet to step slowly onto a moving escalator is often impossible. Busy environments, where there are many people moving around in different directions, are too disorientating to visually process.

Anyone can reach the point of sensory overload during anxiety. But for many autistic people the world is this intense all of the time. When it gets bad, it feels like the sensory wires in my brain are unplugging themselves, then plugging in to the wrong places. Noise is burning, blurred vision, pain, and everything becomes as loud as the loudest thing. Lights speed my heart up and make me too hot and sick. Detail feels like it’s calling or nagging me to pay attention to it. My clothes feel like needles in my skin and clashing smells make my eyes stream. These things confuse, or cancel out, my ability to sense the physical feelings in my body.

Sensory overload happens when you can no longer manage your environment. It really is an awful and frightening thing to go through. In some children and adults, the fear is loud, and it looks like anger, defiance or misbehaviour, which means the autistic person ends up being punished.

They may not be able to communicate their problem and ask for help because these are social skills, they are frightened, the people around them can’t empathise.

Help is unpredictable.

The only way to know how to help an autistic person through this, is to learn their individual sensory triggers and the things that soothe them. Autistic people are always frightened. There’s always that feeling that, somehow, you were born on the wrong planet, and if the people around you do not understand the way you experience the world, it can make you feel very bad about yourself. You withdraw and you shutdown.

Perhaps Matilda can explain this better than me, in her song ‘Quiet,’ written by Tim Minchin, who has a son with Autism.

https://m.youtube.com/watch?v=BoBX7wZO3tE

Blog 3: Autism Acceptance Week, April 1st – 7th 2019

Autism, Perception and Detail

If I had to describe Autism using three words, I would say ‘quest for detail.’ If I were given the option to continue my life without Autism, I would decline, because, for all the difficulties it comes with, I would never give up my ‘quest for detail’ and the joy and richness it gives me.

Sometimes the world seems more alive for me than it does for other people.

Yes I strive for perfection. I have high expectations for myself. I hyper-focus, I over-work, I analyse and re-do things, obsess over things… but I’m not really talking about this kind of detail. This kind of detail is conscious. It comes from perfectionism, obsession, pressure, anxiety, choice, not Autism.

The kind of detail I am talking about, is the ability to absorb such intricacy from my environment, and the inability to filter-out anything that isn’t relevant in that moment. Everything wants to be noticed by me. Everything wants to be heard by me, smelt by me, touched, tasted, and everything is detailed and amplified. This can be completely overwhelming, distracting (and weird for the people around me) but it can also bring me joy.

I don’t walk into a room and see the ‘bigger picture.’ I can’t ‘suss things out,’ or ‘get the gist,’ like others do. Everything needs to be pieced together, like a puzzle, before I can process the environment properly, and this has an impact on how I communicate. Everything is important and I can’t ‘zoom out.’ Other people do this oppositely, with more immediacy but less wonder.

I would be an excellent CCTV camera.

Of course this overloads me sometimes. It effects my motor skills and my sense of the feelings inside my body. It makes it extra-hard to socialise, concentrate, communicate. It is even harder to socialise and communicate in a place I have never been to before, because then my brain needs to notice everything for the first time.

My ‘quest for detail’ means I learn a lot. If something interests me, I have to find out everything about it. It is comforting for me to research my interests, when there is so much about ‘being human’ that I don’t ‘just know,’ like other people do. I can never forget anything, since everything I see or hear is stored like a photograph or podcast in my head, that can be referred back to. I notice all the flickery details on a persons face that give me clues about how they might feel. I notice tiny changes in people, environments and routines, and they disorientate me, no matter how tiny they are. I notice the patterns in a wooden table, the individual hairs on a persons head, the sound of electricity etc.

Other people do this too, but often with less intensity, and with the ability to filter it all out when someone talks to them.

My ‘quest for detail’ is conscious and subconscious. It impacts my ability to socialise, communicate and function at times, and it can be overwhelming, but it also means that I can find joy in little things that others don’t even notice. This can be mindful or mind full, but I wouldn’t change it for the world.

Autism is a gift, but only when society accepts it.

Blog 2: Autism Acceptance Week, April 1st – 7th 2019

Autism Girls and ‘Masking’

Autism is more easily diagnosed in boys than girls. It tends to present in the personalities of boys at a much younger age, and the younger you are, the more support there is. Many autistic women are diagnosed later in life, often following a multitude of mental health misdiagnoses.

It’s just not that easy to spot.

Generally, the desire to socialise, communicate and fit into a group (where there is no specific activity or purpose) is valued more in girls than in boys. So from an early age, many autistic girls learn to mimic the communication behaviours of their peers in order to ‘belong,’ whilst fiercely ‘masking’ all the things that are ‘different’ about themselves.

The ‘masking’ can become so engrained that they don’t even know they are doing it. They don’t know that they are hiding a communication ‘disorder,’ they just know they have to behave in a certain way in order to be accepted by other people, and they become very skilled at it by copying.

This ‘masking,’ (the suppression of Autism) cannot last. As you can imagine, it is lonely and exhausting, and often leads to autistic burnout. This is like a mental breakdown. Autism in women is often discovered after a trauma like this, because the older you get, the greater the expectation is that you ‘just know’ social and communication norms.

The older you get, the harder it is to hide, and the more you get left behind.

Boys’ and girls’ brains are different, but the diagnostic criteria for identifying Autism is still based on the studies of boys. This means that girls (especially girls with self-awareness) are susceptible to developing mental health disorders like depression, anorexia and anxiety, because they do not understand who they are, and this is incommunicable.

For some people, an official diagnosis is not necessary. They function within their limits, are accepted and supported in their environments, are mentally healthy, content in their own skin and proud of the brain they were born with. For me, (although it was a shock,) it was a relief to be diagnosed with something, after thirty years of apologetic despair, for not knowing inside why I am the way I am.

Here is a short film about the UK’s only school for autistic girls: https://m.youtube.com/watch?v=Iy3jYIqRIJg#searching

Blog 1: Autism Acceptance Week April 1st – 7th 2019

What is Autism?

Autism is a life long social and communication DIFFERENCE, but it is not a mental illness or a learning difficulty. People with Autism communicate intelligence, needs, feelings and experiences differently. We communicate love and pain differently. We experience people and the world differently and there are many, many positives to having a brain that functions this way.

We aren’t disabled by Autism. Rather, the world is disabling because it was not built to accommodate the way our brains work. This can make us feel like a bit of a problem sometimes.

The only way this can change is if autistic people share their experiences of being ‘on the spectrum,’ since most information about Autism is written by non-autistic people, for non-autistic people, and they have no lived-experience.

Thus there are many misconceptions about the autistic spectrum. Some people think everyone is ‘on the spectrum somewhere.’ They think you can plot your Autism on a line to see if it’s mild or severe. They think it’s possible to be ‘a little bit autistic.’

Textbooks and the media like to simplify Autism to make it easy to understand, but, as humans, we are not really designed to fully understand any mind. These simplifications are invalidating to #actuallyautistic people, creating stereotypes and barriers.

Autism isn’t linear, it changes everyday depending on many things.

Asking me how autistic I am, is like me asking you how non-autistic you are. I was born autistic and it’s always there, but sometimes my traits will be mild, severe, or insanely useful, depending on the social and sensory environments I am in.

Just because you experience my Autism mildly, doesn’t mean I do. It just means I have found ways to empathise with the way you experience the world in order to ‘belong.’

Another misconception about Autism is that you can see it. Well, you can’t. That is the blessing and curse of it. Poor eye contact, ordering and sorting, lists, lines, logic, facts, stims, routines and rituals etc. are mechanisms that children and adults use to cope with Autism, but they are also the traits of people that suffer with insecurity, stress, anxiety, and other conditions that are accompanied by anxiety.

Autism is a social and communication DIFFERENCE. You can’t see it, you can’t grade it mild or severe, you can’t ‘cure’ it. You can’t choose it, and, unfortunately, you can’t swap brains with me to see what it’s like.

But you can accept it.

You can access it, you can accommodate it and you can love it, just as I can learn to do all those things for you too.

The lady in this video is talking about her diagnosis of Autism at the age of 35 and her journey is very similar to mine. The first time I saw this, was the first time I realised that I was not alone, and that I should share my lived-experience like her, to help others sooner.

https://m.youtube.com/watch?v=cF2dhWWUyQ4


Dear Miss Elphaba (Amy Ross)

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You are the best Elphaba I have ever seen, and I have seen a lot. I came to watch Wicked on the opening night at the Mayflower and I cannot wait to see it again on 20th of this month. If I can, I’ll get another ticket too, before you leave. My regret is that I wasn’t the first one to stand-up in the standing ovation on opening night, but I will be next time, because you are the best Elphaba I have ever seen.

I was nervous to see you, because Elphaba is my all-time favourite musical theatre character, so of course I wanted to like you. I was afraid you’d be too bold or witchy in the start, but you played her perfectly and I loved you. When you sang Wizard and I, I relaxed in my chair, because already it was a 10/10 for me.

Let me tell you briefly why I love Wicked.

Most of my life I’ve felt inferior to others due to the fact that I am different. My mum didn’t have an affair with the Wizard of Oz and drink his green elixir, resulting in me being born green… however, sometimes I think I may as well be green. Lucky (or unlucky) for me, I can hide my differences because they are invisible, and people cannot notice them by just looking at me. People don’t put their suitcases up in front of their faces when I approach them, and they don’t walk-the-other-way out of fear or disgust, but my condition does isolate me, and it does cause people to make assumptions about me that are not correct.

This is why I love Elphaba.

Elphaba never apologises for being green or tries to explain it… she just owns it. Despite all the hurt, guilt and rejection she has felt, she never loses the desire in her heart to be good. This is because her difference, like mine, is the thing that drives her to save the animals, and inspire the goodness in others. She has experienced ‘existing’ on a deeper level than the other students at Shiz, and it has made her inherently caring. For Glinda and Fiyero in particular, it is a shock to learn that happiness comes from being good to others, rather than from getting-what-you-want.

Elphaba teaches everyone that our differences are our strengths, and the weird quirks we try to suppress or hide are our talents that can make good for others.

People with Autism tend to have very intense interests in things. It is not the subject matter, but the intensity with which it is pursued, that makes the interest an autistic trait. Wicked has been a special interest of mine since 2013 and the more I learn about it, the more I appreciate it. Wicked (along with my black cat, Saffie) is what I turn to for comfort when the world isn’t making sense to me. Knowing lots of facts about something makes me feel better about all the social-knowledge and skills I lack, and my memory for facts is excellent. It is tough for me to know, that my favourite show, (Wicked) is in my favourite place, (The Mayflower) and I’m not there every night to see it. I have worked back stage at the Mayflower Theatre before, and I keep imagining all the props and costumes there. I think about the wigs and wands, the bubble dress, and all the scenery…

My mind is very mechanical: it always wants to know exactly how things happen, how things work on the stage. I’ve researched so much about Wicked: I know why Elphaba is called Elphaba; I know facts about all the costumes, the make-up, the wands and the history. I appreciate every instrument in the orchestra, every beat of the drum and every chord. I notice every new piece of choreography, every tiny difference from the shows I’ve seen before, and online.

My favourite thing to do is to listen to the lyrics of the songs, (I know every lyric to every song) and notice all the links and patterns and references. All my friends know that the Wicked soundtrack has been playing on-repeat in my car for about 3 years or more. I don’t think there is a match for Wicked in terms of lyrical cleverness, and I think Stephen Lawrence Schwartz is probably a lyrical genius.

I am glad he was inspired to adapt this story of friendship for the stage.

Friendship is very important in my life because (despite good intentions) I haven’t always been able to make-and-keep friends as well as other people can. This makes me fascinated by the whole process of friendship. Some people with Autism can be quite robotic about things: we respond well to direction, but if we aren’t told, taught or shown things, we don’t possess the ability to ‘just know’ like other people do. No-one teaches you how to make friends: what is ‘too much,’ what is ‘too little.’ It’s something that is just supposed to happen on balance by magic. This can cause quite a lot of hurt in us and I have been made to feel like I am a ‘bad’ person, because of my differences. If you are anti-social, it doesn’t matter too much, but if you are a wannabe ‘social butterfly’ like me, you can be quite vulnerable in friendships. The positive to this, however, is that when friendships do work-out between an autistic person and ‘neuro-typical’ person, they are precious to me on a deep level.

My good friends mean the world to me and, like yours, knowing them has changed me for good, for real. I hope they feel like that about me too. Having friends with differences teaches people patience and acceptance: it enables people to open-their-minds to a different version of the world and be a better person. I appreciate goodness in a person and that is all. In this circumstance I am blessed for being autistic, because Autism simplifies everything: it doesn’t care for popularity, beauty, brains, wealth or fashion. When I hear Elphaba and Glinda sing For Good, I think of my best friends and I feel immense love and gratitude. It feels like Glinda learns what it means to be truly good for the first time in this song.

The biggest lesson Wicked teaches me, is about the delicacy between ‘good’ and ‘bad’. People say my brain is ‘black’ and ‘white.’ I have a bit of a preoccupation with ‘good,’ and ‘bad,’ and I avoid ‘grey areas’ because they cause confusion and anxiety. This, (along with a proclivity to tell the truth) can make friendships and attempts at verbal empathy difficult. However, I know that ‘grey areas’ exist, and I am working on knowing how to accept them. It blows-my-mind to realise that the only character close to being wicked is Madame Morrible. How soul-destroying it must be for Elphaba to be seen as wicked when she is so good-hearted? How deceptive is the wizard, to let people believe he is “wonderful” when he is ordinary? How manipulative (or naïve) is Glinda, to call herself “good” when she is quite selfish? How fascinating that people can change? These people are not wonderful, wicked or good: nobody can be wholly wonderful, wicked or good. They are just people: products of their pasts, functioning in ‘grey areas.’ It is society that forces labels upon them and the labels are wrong.

Just because you’re green, and you can read the Grimmerie, doesn’t mean you’re a wicked witch.

We can’t change our differences but we can be good.

I am glad you didn’t die when Dorothy tried to melt you, and that your chant worked so that Fiyero could never die… (I had a Fiyero too, but he didn’t come back as a scarecrow, as far as I know) …because I’ll be coming back to see the show again before you all move to a different city. I’m the one that can’t immediately stand and head to the bar in the interval, because Defying Gravity is so breath-taking. Thank you for being the best Elphaba I have ever seen, and please tell Glinda that she is the best Glinda I have ever seen… and your flying monkey too.