Invisible Autism

How do you explain just how hard autism can be when you show few obvious signs of being autistic? Honestly, how do you explain this to a world of ‘but you don’t look autistic,’ and ‘but you’re high functioning, right?’ and ‘well, I don’t believe in labels’?

So you walk into a restaurant with a group of friends or family. There’s maybe five or six of you round the table. There’s music in the background. There are people talking, clinking of glasses, scents of food. You’ve never been to this place before. What’s on the menu? What’s the food like? Where’s the toilet? Your anxiety is rocketing. And then everyone at your table is talking. You’re trying to take part in the conversation, but you’re not quite sure how to interact. Are you coming in at the right times? Are you talking too much or too little? Someone’s said something at the other end of the table btu in the mess of vcoies it’s ruully hrad … what they … ashmumbal fer nosit … shum … shlush murmm to shush … … … … …

(Wikimedia Commons)

And everyone laughs. What are they laughing at? You could hardly catch a word. So now you’re set back again. You’re at a disadvantage. You start to drift off a little, because if you can’t really tell what people are saying then you can’t join in the conversation, and it’s such a strain. What you’d really like to do is rock or tap or go to a quiet place. You can go to the toilet for a break, but where’s the toilet again? What’s it like? Do you go left or right? You manage to get the courage to go alone to the toilet, and you have a bit of quiet, but you’re already sensitised. The toilet flush is like fingers on a blackboard. When the hand dryer goes off it’s as if your head were filled with buzzing bees.

You come back to the table and everyone’s still talking. It’s easier for a bit to grasp the conversation, but pretty soon you’re out of it again, you’re tired of trying so hard to keep hold of the threads. If you start rocking on your seat or doing anything overtly like a stim people will think you’re weird, so you play with your phone. Press the buttons. Flick between apps. Dive for a moment into social media, where, thank god, the noise and smells and overlap is gone. The small talk is gone. The uncertainty of trying to catch what’s being said is gone. Being in there for a short time calms you and makes you feel capable again, but you know that looking at your phone is a social faux pas, so you can’t do that for very long.

But it’s okay. You manage the meal. The food’s good. Yes, it’s another strain. Different cutlery, new foods, trying to fit in with everyone else’s pace and their ability to eat and talk. You’re constantly ricocheting between different social uncertainties, but finally you’ve done it. It was actually nice. It was hard, but it was nice.

What you really need now is quiet time. You need to be alone, to put your head under a quilt, to take refuge again in your phone or in a book or just in dark and silence. But somehow other people have a superpower, and once they’ve had the meal they’re perfectly able to have a few more drinks, to sit casually at the table chatting in words you still can’t hear properly. They can move on to another place for more drinks, while you’re thinking, but I’m not thirsty, really I’m not, so why am I drinking pint after pint? You’re thinking, but I’m so tired. I just want to stop.

(Hip, Hip, Hurrah! (1888) by Peder Severin Krøyer)

You get back to the house, but it carries on. The talking. The socialising. The sitting around not quite catching what people are saying and constantly trying to keep up with the social situation. You give in and retire to bed. So you finally get your peace, your quiet. You sleep. Your dreams are full of the anxieties that plagued you while you were awake, so you don’t sleep well. When you wake up, what you really need is an hour or more of absolute solitude to reset. But it doesn’t happen, because you have to be social again. You want to be social again. You don’t want to be the oddity, the wimp who’s always dropping out, the one who misses out on everything.

But you only have so much to give. Perhaps you can paper over it for a few days. You can manage. You come across as reasonably normal. So what’s your problem? You’re fine. You’re not really autistic, are you? It’s just a label that you cling to. It’s just an excuse. Everyone else feels like that sometimes, don’t they, and they manage?

Once you’re alone, once it’s all stopped, perhaps you go into shutdown or meltdown. You can’t talk easily. It’s hard to communicate. You’re depressed. You can’t manage to do a thing. But this is invisible still. No one sees this. There’s nothing wrong with you, not really, because you don’t flap and you don’t know every bus route off by heart, and after all, you don’t look like the autistic boy someone knew in school.

A Little Life of George

It’s hard work being George. It really is. Currently he’s not diagnosed with anything and he’s waiting on assessment, so I won’t make any assumptions here. But this is what it’s like being George. (I feel the need to remind you again that these aren’t my children’s real names.)

From Chaos to Order, by Sebastien Wiertz on Flickr. Kind
of the wrong way round, but do you know how hard
it is finding photos for things like this?

Life is endlessly frustrating for him. People talk to him and make demands of him and don’t know his reactions unless he verbalises them, which I feel irritates him a lot. People annoy him by distracting him or breaking into his routine. They ask him to do things he has no interest in, like dressing himself or tidying up. If he’s asked to do homework he usually collapses into a heap, or turns himself upside down, or shouts or screams. He’s asked to go to school and mix with crowds of people when really he’s best one or two on one. Apparently small and insignificant things can throw him right off the rails. These issues don’t bother him every time, but they do more often than not.

Yesterday was a doozy. George was playing with a toy car in the school playground. When the time came to go home he realised he’d lost it. He wanted me to look for it, but since Ben (three) had already walked out through the gate with Oscar I needed to follow him. I told George he could quickly have a run around to look for it himself, and catch me up, but he wouldn’t. I understand the paralysing fear of doing something like that, but I still had to catch up with Ben, who’s too young to be out of the school playground without me.

Toddler in the Middle of a Tantrum, by Stephanie
Chapman, on Flickr. This is an 18 month old. It doesn't
get easier when they're six years old.

This precipitated a tantrum of epic proportions. Everything became a scream. He screamed at me for calling the playground a playground. (He wouldn’t tell me what it was called.) I told him I wasn’t arguing about taxonomy because I had to go after Ben. A lot of hanging on to my arm and collapsing onto the ground ensued. It’s hard to describe the horror of trying to deal with this kind of thing when you’re Aspie yourself and get completely overwhelmed by the chaos of someone else’s meltdown. The screaming and shouting and screaming from a six year old who is consumed with rage at not being able to control his own circumstances. Trying to walk carrying multiple bags, coats, and a guitar, with a tantruming child hanging off one hand and a three year old trying to hold the other. The world condenses down to a place where the only thing that exists is your child, screaming and kicking and slapping and collapsing on the ground and shouting at you and becoming enraged at anything he can get a hold of. ‘Stop walking like that, mummy.’ ‘You’re making me do x, mummy.’ ‘You’re making me bored, mummy.’ It is impossible to adequately describe how enveloping and affecting this behaviour is. By the time we had got across the field I was at the point of beating my head into the conveniently place electrical substation. I needed to have my own meltdown. Instead I managed to hold off until we were in the house where I went into shutdown mode, where I could barely speak or move for the next few hours.

These kind of meltdowns don’t happen every day, but there is always something. Here are a couple of examples of what it’s like to be George.

Sometimes he wants a drink of water and I can’t find the water bottle that I carry with me most of the time. He relies on drinking from this bottle. He can’t go to the tap and get a drink in a cup because – well, because it’s not what he does. He has to drink from my water bottle. He either shouts or screams or collapses.

Cucumbers En Route to Pickledom, by Stacy Spensley on Flickr.
George would love this. He is made very happy by cucumbers.

One day he was given two slices of cucumber at dinner (one of them was very thick). He almost always has three slices of cucumber. His response to something like this is a burst of fury and outrage. I got out my penknife and tentatively cut the thicker slice in two. Calm and happiness was restored. He’s not being awkward or picky or over dramatic. He is genuinely thrown off track by having the wrong amount of slices, and things won’t be right until the normal routine is restored.

Recently he’s been wearing black school trousers every day. One morning his black ones were dirty and I had to give him grey. His tantrum lasted through getting dressed (which I had to do by holding him down and forcing the clothes onto him) and through most of the walk to school. He had to be carried at times (and he’s quite a solid 6 year old). It wasn’t until I thought the time was right and I crouched down and hugged him very tightly that he could grow calm.

Sometimes we ask him stupid questions, like, ‘Do you want shoes or boots?’ ‘Do you want to wear socks?’ ‘Do you want sauce with your dinner?’ Often the answer is a very indignant, high-pitched scream of ‘yes!’ or ‘no!’ depending on his preference. He’s not just being stroppy. He’s genuinely indignant because I believe he expects us to know.

If he can do things as he wants to things go on pretty well. He needs to stand in the right place to brush his teeth, use the right toothbrush, always with the right toothpaste. I don’t argue with this, so things are fine. But if I told him he couldn’t stand on the left side of the sink leaning on the bath or if I suggest it’s late and he just go to bed without worrying about his teeth, he would get very upset.

It gets harder when we go out of the house. He can be very talkative but he doesn’t like speaking to strangers. A lot of interactions are made non-verbally. He’ll hide his face or stare at the floor. He makes a thumbs up sign for thank you. He whispers things to me to tell other people. He points or nudges or obliquely indicates things.

Waiting Room, by Robert Couse-Baker on Flickr. George would
be under the chairs by now, with his face against the floor
or the wall.

Even worse are medical appointments. I can’t get him to open his mouth to the dentist and I’ve never dared making him an official appointment. He spends most appointments hiding under chairs or screaming. At a recent speech therapy appointment he spent the waiting period mostly under chairs. He had to be manhandled into the room, where he stood in the corner with his face to the wall shouting, ‘Stop talking, mummy,’ until he switched to hiding behind some chairs.

He left that appointment by rolling on his side out of the room, down the corridor, and across the reception area.

There are a lot of things to be grateful for about George. He is the most sweet and loving child. He is creative and kind. He’s doesn’t seem physically sensitive like Oscar, and he’s not particularly picky over his food like Oscar is either (the list of things that Oscar won’t eat because of taste or texture is very, very long, whereas George will eat olives and couscous and houmous and drink concentrated lemon juice, neat.) He is wonderful and imaginative and generous. His smiles are like the sun coming out. He gives spontaneous hugs and gifts of food or flowers. He is the kind of child who can roll out of an appointment with complete aplomb, and I think that’s the kind of thing to which we should all aspire.

A Lack of Imagination

The Insular Cortex (Soure: wikipedia) where consciousness happens.

I have been thinking about imagination, and about how some doors of imagination are closed to me. I’m a writer. Imagination is my thing. Metaphors, similes, creating new worlds and people to go in them. But other people’s imagination is another ball game (look, there’s a metaphor, and not even one I really like.) I like this item of food, so why don’t you like it? I believe in this political viewpoint, so why, even if I explain as clearly as I can, won’t you agree with me? Why won’t you believe what I know is the truth? Why doesn’t your mind think like mine? I can try to see it as I would see it if I were you, but not as you would see it without my involvement.

I am a literature graduate and I love well written fiction with a passion. But I find it very hard to imagine other writer’s worlds in my head. This is a hard thing for a writer to admit to. When I read a book I almost never see the faces of the characters. Even when I write I can’t see the faces of my characters. People are harder to visualise than surroundings, but with some writers surroundings are almost impossible too. Jane Austen, I have found, is almost impossible to visualise. When I read Emma many years ago I couldn’t visualise Emma’s world. She was forever walking up and down a street that was something like a film set with nothing behind the fronts of the houses. Austen describes minds, not places.

'The Reader Wreathed with Flowers,' Camille Corot (Soure: Wikimedia)

I can get lost in a well described environment. I remember reading The Long Winter once and looking up astonished to find that there was bright summer sunshine outside, not a blizzard. But still the characters’ appearances are a mystery, no matter how well described. Characters have hair and dresses and physical actions, but they don’t have faces. A good film adaptation is a blessing, because then I have something to fit in my mind to characters which would otherwise be an amorphous grouping of described features, something like a late Picasso painting. I might hear a description of a nose, of eye colour, of high cheekbones, but these things are a jumble in my mind.

Extend this, and I find it very hard to keep a number of characters in my head. All these names that don’t really have faces are jumbled around in my mind as I read each page. I find it hard to remember names and fit them to faces in the real world, so in a book where I have never been presented with an actual physical image of that face is nigh on impossible. Imagine the time when I was walking to the school with my husband. He waved and greeted someone. I asked him in a low voice who it was and he told me in a bemused voice that it was the man who lived across the road from us. I recognise him in the street outside his home, but I’ve never seen him on that path before and so he was a stranger. I couldn’t tell you his name if I tried. I’m having trouble recalling his wife’s name right now, someone I speak to often on the school run. It’s something Welsh and I know it isn’t Gwen. That’s it. The further people are away from me in lifestyle, tastes, habits, the harder I find it to remember their details. (Don’t get me started on remembering their contact details. I still can’t even remember my own home phone number.) So give me, say, sixteen people in a novel whose faces I cannot see and names I struggle to remember, and I’m lost.

Members of the group "Anonymous" (Source: Wikipedia)

Of course this lack of social imagination has an impact on my interactions with the real world. Other people seem to be part of a web of communication from which I am excluded. This has gone on all my life and I feel it as soon as I’m in an arena where I need to pick up those vital bits of information that people share with each other. ‘Oh, you know Betty?’ someone says. I shake my head. ‘You know, Sarah’s mother. Sarah’s in George’s class.’ I shake my head again. I have no idea. These people mill around and if they have particularly pleasant or unpleasant personalities their faces might start to stand out. (I have to admit, I remember the faces of those people I see as threats far better than those I see as friends.) If they talk to me a lot I might start to remember their name and I know the names of my children’s friends, but no further. There’s a network of gossip, discussion, information sharing, whatever you want to call it, but I always seem to be on the outside.

What does all this mean? I don’t take people away with me in my head. When I leave my children at school I am aware of their existence, of course. I love them, and if there’s something specific that has them upset I might worry about them, but essentially once I turn away from the door I could be childless. I don’t look ahead to the moment of picking them up. In that moment I could be childless for the rest of my life. I don’t have a good memory for what happened last week or a good concept of what might happen next week. Things happen a day at a time. So I don’t live with the thought of other people in my mind, not unless they’re making noise, poking me, in some way invading the bubble of my mind. That, perhaps, is a lack of social imagination. I have six or more novels under my belt, but I can’t see the faces of any of my characters. I have read hundreds of books, and the characters are a cannibal’s assortment of noses, eyes, legs, and hair. This is how my mind works.

On Asperger's and Sensitivity

The last time I posted I spoke very briefly about being an HSP mother. I promised to save that for next time. I've known that I was an HSP for a good many years, but recently my self assessment has changed. HSP stands for Highly Sensitive Person, and if you want to find out more about that then Dr Elaine Aron's site is the best place to go. 

If the phrase 'Highly Sensitive Person' sounds like it should be surrounded by daisy chains and auras perhaps it's because it often is. If I have to hear the words 'are you an indigo child?' one more time I may scream. I'm not saying all HSPs are like that, but you get an awful lot of it.

The perfect retreat - as long as they don't know I'm in there.

I am HSP. I have all of the problems of being HSP. The overly sensitive skin, hearing, sight. The intolerance for chaos and noise. The sensitivity to chemicals and insect bites. Ant bites turn into huge red weals. The last time I was stung by a bee I went into anaphylaxis. Then there's the social sensitivity. The need to frequently withdraw from other people and be totally alone. That's why I'm currently lying in a tent with a blanket over my head. The screaming and bickering of three small children is enough, but it's not just that that fills me up. It's the constant little nudges. The questions, the touches, the inability to go anywhere alone. The constant kisses that make nausea rise in me. The constant sensory stimulation is just too much. I start to feel as if my mind is spinning and coming apart. I want to scream and hit them away. Of course I don't. At least, I try to control it, although I can't promise not to snap.

But recently I have grown to realise that it was more than that. It's not just being an HSP. It's actually Asperger's Syndrome.

My problems in fitting in with other people go way back. I've always had few friends or no real friends. I can't say 'I love you' to anyone but children and animals - not without a great deep down questioning of what love is and if I really feel it. I can't sit in a room and talk to a person, even a close friend, without intense anxiety and self-reflection and analysing every sentence. I can barely talk on the phone. I constantly feel as if I'm missing social cues, misreading people's reactions, coming in at the wrong point or failing to come in at all. I go away from these interactions feeling drained and full of self-hatred for my inability to connect, to just do what other people do, and sit down and talk. I want to connect with people. I really do. It just doesn't work out. It's especially hard when every new place and situation sends me into a kind of shutdown, when visiting a place that I haven't been to before leaves me with intense anxiety and moving house makes me need to hide in bed for a week with physical weakness, diarrhoea, and an inability to think straight.

Often I don't know who I am.

I think I've heard every stock response since my self-diagnosis. 'You can't have Asperger's, you're too empathic.' 'I knew someone with Asperger's and you're not a bit like her.' 'You're just trying to explain your reaction to a difficult childhood.' Conversely I've had a couple of supportive friends - one with Asperger's herself who had suspected that I had it, another who is a learning disabilities nurse who suspected the same, another who read through the symptoms after her initial doubts and agreed, yes, that was me summed up on paper. These friends are like a balm and make me feel less like I'm losing my mind or being a hypochondriac. One of the problems with Asperger's is a lack of a sense of identity. If I watch a film or read a book or am exposed to a certain strong identity I take it on, chameleon-like, and so I am left constantly questioning my motives and from where my feelings have come. I worry that I am too empathic to have Asperger's, but empathy in Asperger's is a hot potato all of its own. There is a current line of thought, which seems upheld by most of the aspies I have met, that people with Asperger's actually feel too strongly, and so shut down and have difficulty in processing their emotions. We grow attached to inanimate objects even more so than bewildering human beings. This explains why I grieved for almost eight years about moving home, sobbed when we got rid of our broken television and settee, and still dearly miss the car we had when I was growing up. It explains why when someone comes at me with a hug or a kiss I feel as if I'm in the path of an oncoming train, and why I can't say, 'I love you' without deeply analysing what it means to love. Love is too important a thing to miscommunicate to someone who means the world to you.

It's extremely difficult to pursue a diagnosis of Asperger's if you're female and on the NHS (at least in this part of the country, where they just don't seem to have the resources.) Females with Asperger's syndrome are exceptionally good at coping mechanisms, it seems, at papering over the cracks and fitting in to a neuro-typical society. My case has been summed up as 'everyone finds life hard,' and dismissed because I'm a writer, capable, it seems, of empathising with my characters and using metaphor. Language is my 'thing.' It's what I do well - written down, at least. Spoken, it's a different matter. But all of the online tests agree. All of my contact with other people with Asperger's agrees. My resonance with their experience agrees. All the little seemingly unconnected things in my life agree with the traits set out for females with Asperger's. Reading Tania Marshall's highly detailed list of female Asperger's symptoms is like reading a biography.

Part of a series of earthenware figures I made as a teenager,
exploring loneliness, empathy, and family relations.

But what does all this mean for me? It means that things that aren't symmetrical make my brain itch and most of the time I wear no more than a t-shirt because clothes drive me crazy. It means that messages in my inbox go unanswered because the more important they are the more anxious I am to get the reply exactly right. It means that I don't see good friends for years because the thought of meeting up with them and opening up social interaction is terrifying. It means that I barely talk on the phone except to my family. It also means that often I am shut off and unaware of other people's problems. It means that when I am aware of them I am desperate to help them 'fix' it and get back to the status quo. It means that sometimes I say things that are too blunt or too focussed on solving the problem rather than simple reassurance. (If I give you simple reassurance it's likely that it's a learned habit. Coming from a family with deep mental problems I've had a lot of practice at that.) It means that I suffer from depression and anxiety and the urge to self-harm in order to get some control over my life. It means that I love my children dearly, but that I get touched out, overwhelmed, in desperate need of alone-time.

Not my most organised shelves. I mostly just love
the aesthetics of this.

It also means good things. Obsessions with television programmes and characters that have immeasurably improved my life and brought me many online friends. True it means that I spent a good portion of my teenage years having meltdowns at equipment failure when watching Star Trek, and that I have spent a lot of the past few years sobbing over the death of Peter Graves and the fact that my favourite character left the tv show Route 66, way back in the early sixties. But these obsessions bring me a huge amount of joy. Writing fanfiction taught me to write novels. Needing all of my dvds and cds to be ordered by alphabet and genre means that I can find what I want when I want it. I don't lack things to keep my mind occupied because I have to watch every episode of my current obsession in order, or I have to read every single book on the latest 'have you read this?' list regardless of personal taste. I like to answer questions and find out as much as I can about the world. I see things at a different angle, and I feel that I see them better for that.


Having some kind of diagnosis, albeit a non-professional one, has helped me to make sense of my life. It's made me feel like less of a broken human being. When my sympathy span is short if my children have hurt themselves I know it's not just because I'm a despicable human being. When I need to get away from the touching and kissing it's not because I'm cold. And when one of my sons has his own meltdowns over the wrong trousers or being misunderstood or a hundred seemingly insignificant things I can understand that it's probably because this runs through the family (I can see it in various family members) and he's not just being precious. He has real, valid fears and concerns. For the first time in my life I have a connection with people who think and feel like me and understand the issues that I face in life. The hardest thing is being 'out' to people who don't believe that I'm right about myself. The best thing is being 'out' to those who do.