by Laura James
Mark is the most horrible. Sometimes he says bad things to me, like saying that my mummy is mental.
‘Your mum’s a nutter and so are you,’ he said, with his face too close to mine. I don’t know what this means and I don’t want to ask him because he makes me scared. When he said this the other children, boys and girls, laughed. I think Katherine also laughed and that made me most sad. My notebook is my most important thing – after Fluffy – and I would be very upset if it got lost.
I don’t like Mrs Everett because she makes me do things I don’t want to do. But I also don’t like her because she tells lies. She lied when she said I would have a nice time at school. I am not having a nice time.
Everyone at school lies, but when I tell them they are lying I am the one who gets into trouble. It’s not fair.
The dinner ladies lied when they said the food is yummy. The food tastes horrible. Annalisa lied in assembly when she said she was going to be on an advert on television. I haven’t seen her on an advert so I think this is a lie.
The lady in lost property lied too. She said that my jumper would turn up and it hasn’t. I think someone else took it home, which makes me want to go to everyone’s house and have a look until I can find it. I hate my jumper, but even more I hate that it is in the wrong house. Things should be where they are meant to be and it makes my head feel funny when they are not.
All the children come back from lunch and we listen to poems. There is one called ‘The Big Rock Candy Mountains’. I quite like it, but the best poems are in The Cat in the Hat and Green Eggs and Ham. People like to read Green Eggs and Ham to me because they say I am a fussy eater. That means I am like Sam, who does not like green eggs and ham. Like Sam I am.
That rhymes and I like that because I like poems. We have to write them. Today we have to write a poem about weather. This is my poem:
Silver and sparkling
Snowflakes fall
The world is like
A fluffy ball.
All around
The world is white
What a lovely
Pretty sight.
In class, Mrs Everett reads some of the poems out. Mine is the best. I have to stand at the front while Mrs Everett reads it. I hide my face behind my hand because all the children are looking at me.
After we have read poems, it is time for PE. I hate PE. We have to wear our vests and knickers. In front of everyone. It is wrong. Knickers are private and I won’t get undressed in front of other people. I scream when they try and make me do this. Lots of the girls don’t like showing their knickers, but I am the only one who screams. Today I try really, really hard not to but I can feel hot tears behind my eyes and I think I might scream.
After school I go home with Alison and that is OK. She is my cousin. She is in the Juniors and I am in Infants. This means that even though we go to the same school I never see her there because our playtimes and lunchtimes are different and infants are never allowed to cross the playground line into Juniors. It is called out of bounds and it is very naughty to go anywhere called out of bounds.
I like Alison’s house and I especially like her bedroom because it is always very tidy without her even trying. I get muddled in my bedroom, so it is always messy and this makes me feel confused about where things are. I like things to be lined up neatly. All my toys are in a line in my room, but sometimes I am not very good at putting my clothes away, so they are on the floor and I get into trouble for this.
Tidying up is hard. Harder than reading or writing and much harder than doing sums or watching Lizzie Dripping on television. I like to know exactly where everything of mine is and get very upset and cross if I can’t find it. I do not like it when I can’t find something and it makes me have what Daddy calls a tantrum.
Because Alison is older than me, sometimes I am allowed to walk to the sweet shop with her. It is my favourite place to go. It smells lovely as if all the sweets have got together and created the best smell in the world. In the shop there are two types of sweets. Those that come in jars and have to be weighed by Mr Ellington and ones in packets that you pick up yourself and take to the counter.
In the jars, I like the pink shrimps, milk bottles and the sugar mice that have string for a tail. I only like the pink ones though. Not the yellow or white because they don’t look or taste as good.
In packets, I like Treats, Mint Cracknel (which I think tastes like minty glass), Milky Bar and Munchies. These are much more chocolate than sweets, but I don’t like packet sweets because they are things like Opal Fruits, which are the wrong kind of sticky and taste a bit like plastic. Alison is allowed Golden Nuggets because she is older. It’s like bubble gum, which I am not allowed in case I choke on it. Alison told me that if you swallow bubble gum it stays in your tummy forever.
I eat the food at Alison’s house. Her mummy makes biscuits every day and we sit at the table and eat them. I love having lunch there as there are lots of different things to choose from and there are always chives. I like chives. Eating them is like eating grass that tastes nice. Proper grass doesn’t taste nice. I know because I have tasted it to see if it is like chives. It is not like chives.
Daddy is going to pick me up later when he has finished work. This means it will be after my bedtime. I will have a sleep at Alison’s house, in the spare room, and then I will go home in my nightdress. I am not happy when this happens because I hate waking up when I am asleep. Being asleep is the best part of the day and it isn’t very nice when I have to wake up.
Fluffy will be at home, though, waiting on my bed. That is the good bit. It is easier to go to sleep when I am at home and Fluffy is there because I like things to be in the right place and the right place for me to be asleep is in my own bed.
I often have to have a sleep at Alison’s house or at Hazel’s house across the road. Hazel’s house is quite nice because there is a conservatory and she has a cat. It is a quiet house because Hazel’s children are grown up and this is nice for me because it means I don’t have to put my fingers in my ears.
There are lots of plants in Hazel’s house and the floor is made from wood which has a pattern like some I see when we do easy maths at school. Hazel said it is called parquetry. She showed me how to spell the word and I was surprised there was Q for queen instead of K for king as it sounds like it should be spelled parkertree. When I go to Hazel’s house I usually sit in the conservatory, which is at the back, but sometimes I am allowed to read in the sitting room, which is at the front. Then I can look out of the window and see the cars going by.
One day a lady came to my house after I had gone to bed and gave me Sheena. The lady said she was a social worker. She came to make sure everything was all right because I am adopted. This means that a lady had a baby that she didn’t want because she was on a stage and she wanted to do that and not be a mummy. So she gave me to my mummy and daddy because they couldn’t have a baby of their own.
The social lady was nice. She asked me questions like what do I like to eat and am I happy at school. I said that I like to eat chicken and roast potatoes and that school isn’t nice because the food is bad and the teachers aren’t very clever. Then I was sent back to bed so she could talk to Daddy.
Mummy wasn’t there because she was in hospital. The lady asked me if I was sad about this, but I was not. I don’t think about Mummy when she isn’t there. I don’t think about anyone when they are not there.
Mummy has something wrong with her called nerves. Nerves is a bad thing to have. It’s not like when you get chickenpox or a sore throat and everyone is kind to you. When you have nerves it makes people cross and they shout. They don’t give you hot Ribena or rosehip syrup and you don’t get sweets and books. I hope I don’t catch nerves, because I don’t want people to shout at me. When they do I sometimes scream or go very, very quiet. It’s like hiding in the airing cupboard where no one can find you.
Sometimes I look at other mummies and see if there is one I would like more instead. I th
ink I would like Katherine’s mummy because she always smells like a garden and has nice clothes and she hasn’t got nerves.
CHAPTER THREE
November 2015
I meet my new therapist, M, in Norwich, in the same offices where I had my autism assessment. It’s an elegant Georgian building with high ceilings and rooms that look as if they were designed for entertaining. The one we are in now is reassuringly exact and has a black fireplace with a white surround. Above it is a framed seascape. The walls and carpet are the same pale green. I have real problems with this colour. Overall, though, the room has an air of calm and quiet, as does M.
I look at her and try to make sense of what I see. I find it impossible to guess her age. I can’t do that with anyone. If I were forced to, I’d say early thirties, but I could be out by as much as ten years.
She is wearing a blue cardigan, a sensible maroon wool dress, and boots. Her clothes are functional, but I can’t help thinking she must be uncomfortable in them. I can almost feel the scratchiness of the dress around the neckline and wonder how she copes with tight cardigan sleeves over a dress. I would hate the feeling of the sleeves not being completely level with each other. The thought makes me squirm a little in my seat. I want to pull the dress sleeves down. M’s boots make a tiny squeaking sound as they rub together when she crosses her legs.
Her face is clean of make-up and her light brown hair is cut in a bob. Her skin is pale and unblemished, her eyes intelligent and concerned. She smiles easily and has a manner that suggests she is entirely comfortable with herself. I hope she has someone to tell her how lovely she is.
I imagine her life. I’m sure there are children and that they are quite young. I’m sure there’s a husband too. In my head, he is quite serious and has a job where he also does some good in the world. I make up stories for everyone I meet. Knitting together words in my head makes the person more real to me and somehow less scary.
M and I sit facing each other. She shuffles through some papers on her lap. I am never comfortable being the one who is not in control of a situation. I think I have a habit of ‘interviewing’ everyone I come across, but am fully aware this would cross the boundaries. I’ve had the kind of therapy you see on American TV, where the therapist says nothing and an uncomfortable silence hangs in the air. I wonder if M really is shuffling papers or if she is waiting for me to reveal something big about myself.
When it comes to silence, I always break first. Usually with a joke.
‘You use humour to hide from your problems,’ a therapist once said to me before asking me to choose which cushion I would like to play the role of my mother. I laughed and, once I started, I couldn’t stop. Turns out Gestalt therapy was not for me.
M won’t be asking me to tell inanimate objects that they screwed up my life because they wouldn’t let me play the clarinet when I was seven. Her specialism is Cognitive Analytical Therapy (CAT) and she is used to working with autistic people. This helps me feel more comfortable. CAT is like a cross between CBT – Cognitive Behavioural Therapy – and something more analytical that looks at how and why you feel the way you do, based on past experiences. It is designed to provide coping strategies.
Once M has located the piece of paper she’s looking for, she smiles warmly and I know in an instant that this time the sessions with her will offer so much more than anything I’ve experienced in therapy before.
‘Is the temperature OK in here for you?’ she asks.
I say it’s fine and that I am quite warm enough without being too warm. If I am too hot or too cold, I can’t think straight and it is likely – if I don’t leave the room – to bring on a meltdown.
‘Is the chair comfortable?’ she asks. ‘Not too bright in here for you?’ M is obviously well versed in the sensory issues of autism.
I feel looked after and like it. Usually if a room is in some way making me feel bad, I don’t say anything. I find a reason to leave or suffer in silence. The consequence would be that the experience, whatever it was, would be diminished. I wouldn’t be able to concentrate, only able to think about getting out as quickly as possible.
There are boundaries in therapy that I want to respect, so I don’t intend to go into huge detail about what happened during each session, or about M herself, as she values her privacy. Instead, I’ll concentrate on what I learned.
‘What would you say your main issues are?’ M leans forward in her chair and crosses her hands in her lap, waiting for my answer.
‘I have made a list,’ I say and proceed to work through it. ‘Number one on my list is I want to feel less frightened all the time. Number two is that I want to find a way to organize myself better. I feel as if I’ve always missed the milestones everyone meets and I want to begin trying to catch up. I’m terrified of committing to anything, so want to learn to do that. I want my relationships to feel better. I want to learn to feel instead of think. I want to learn how to do all the normal things people do, like manage their money, remember to eat, have friends, be organized. I want to know what I like and what I don’t. I want to stop being so confused by the world. I want it all to be easier.’
M gives me homework. She asks me to watch a TED Talk on vulnerability by Brené Brown. She gives me a feelings wheel to take away and colour in. I’m struck by the sheer number of feelings shown. I just don’t feel any of them. Apart from fear. What does responsive feel like? Valued? Or insignificant? How can anyone feel insignificant when they are at the centre of their own life experience? It all seems so complicated and confusing to me. M also asks me to keep an anxiety diary and to bring it back the following week.
Tony Attwood believes autism and a degree of anxiety are, sadly, common bedfellows. ‘I’m trying to seriously think if I’ve met someone with Asperger’s for whom anxiety was not an issue,’ he tells me. ‘It’s hard to find one. I think there are neurological and psychological reasons why the rate of anxiety is so high. When I talk to adults with Asperger’s in groups – sometimes several hundred – I will say, OK, guys, what are your biggest challenges? Most of them say managing anxiety and they say it affects their quality of life far more than any other ASD feature.
‘One [neurotypical] approach is to say to the person with Asperger’s that they should just relax. The person with Asperger’s says, I don’t know how to relax. Neurotypicals just switch on relax. The person with Asperger’s can’t find the switch. It’s like trying to fall asleep – the more you try to fall asleep, the more elusive it is.’
Dr Somayya Kajee, the psychiatrist who diagnosed me at the Anchor Psychiatry Group in Norwich, agrees that anxiety may be a factor of autism for many. When we talked about it, she said: ‘I think autistic people have anxieties generally and they have anxieties about a lot of things. Diagnostically, when we look at co-morbidities, we look for what they have in addition to what is presented as a symptom of their autism. Do they have a social anxiety as well, or OCD?’
I asked her whether people with autism experience anxiety differently.
‘It’s really hard to disentangle it. Any person – and those with autism are individuals – experiences anxiety in different ways. I suppose that’s where we make sense of it for the individual.
‘When I saw you I said you have some of these rigidities, but I felt this was very much in keeping with your autism, rather than your having OCD. We spoke about how it was that you can do what you do and still have autism. But again it is about expectation – you get anxious if things are not what you expected or are not going how you planned.
‘So I felt it would be explained by the autism rather than, say, a separate social anxiety, which we do see. It is really important I think to tease out those differences. But even if you did have social anxiety, the treatment of that social anxiety would be very different to how you would treat the anxiety in somebody who didn’t have autism.’
I also spoke to Dr Jessica Eccles, a lecturer in psychiatry at Sussex University, where she has spent the last three years looking at
the relationship between hypermobility – which is a core feature of EDS – and psychiatric symptoms, including work in a neuro-behavioural/neuro-developmental clinic. She believes anxiety in those with autism may also be influenced by an altered interpretation of physical sensations. She told me: ‘There is a strong association between autism and anxiety. It particularly seems to be physical anxiety. Some of that may be to do with awareness of internal bodily sensations and bodily focus.
‘It’s called interoception. My colleague, Dr Sarah Garfinkel, is doing some work showing that in people with autism, hypermobility or both there is a mismatch between the subjective experience of their own internal bodily sensations and how accurate they are at interpreting them.’
Talking to M is easy, but I am aware this is my first therapy session and it will possibly get a lot harder. I have never quite found that breakthrough point others talk about with therapy. I have never found it painful and have never become emotional. I think maybe this only happens in movies or I’ve been doing it wrong, or it happens for people who have buried past pains deep in their subconscious. I am here to learn how to fix my life. I am here to work hard. I listen intently as M explains how to fill in the anxiety diary.
I have to record the date and detail the feeling, the point I recognized I was feeling anxious, how I responded, how those around me responded and the effect it had on me. I can do this. It is essentially compiling facts, something I am good at.
Later, at home, I resolve to start the diary tomorrow but look at the feelings wheel, determined to colour in something. The boiler has run out of oil again, so we have no heating. I choose the feeling cold and colour it in with a grey pencil. I’m wondering, though, if a different kind of cold is meant here. I also colour in scared. In red. Red seems the right colour for the feeling of being scared. I feel it exactly as I did as a child. I am most scared of getting something wrong, doing something bad, being in trouble.