Touch: A brief note

A lot of people with autism/Asperger’s can’t stand being touched. In some ways I’m like this: whenever my Mum or her friends attempt to do massage on me (Mum’s a holistic therapist), I get an uncomfortable feeling that’s as intense as pain, but which doesn’t hurt. Earlier I had a poke war with a friend: I was fine when she poked my shoulder, when she poked my tummy I had the ‘intense discomfort’ feeling and had to suddenly ask her to stop.

That’s not to say that I don’t like being touched at all. I really love hugs: I joined the ‘Free Hugs’ society at my university as soon as I knew it existed, and spent one afternoon with the society hugging random strangers. I love to hug my friends when I see them - something about the pressure of a hug, and the happiness of being with a friend, make hugs wonderful.

We are not the same

When the book ‘The Curious Incident of the Dog in the Nighttime’ first came out (the main character, Christopher Boone, has high-functioning autism), I was glad. Finally, autism was getting acknowledged, finally people would begin to learn, begin to understand.

Turns out that I was wrong, though. If I had a penny for everytime someone said “Oh, so your brother’s autistic, is he good at maths then?” I’d certainly be able to buy myself something nice. Or “Oh, you can’t be autistic, you don’t see people as objects”. I had a doctor tell me this once; another time my CBT-practitioner asked if I have friends, and when I replied that I do, he said that I was unlikely to be autistic.

So, it seems that there are some misconceptions about what ‘all’ people with autism and Asperger’s have in common. I’m not a savant, like Rain Man. I don’t see people as objects, like Christopher Boone, or like Linda Freeman in the film 'Snow Cake'. I don’t have a meltdown if I don’t keep my schedules to the minute, like Jacob Hunt in ‘House Rules’. And even compared to the people I personally know with autism/Asperger’s/suspected ASD, we’re all different to each other.

One person commented to me that people with autism have no capacity for love. Let me get this straight: I can love. I love my brother dearly, I love my parents, I love my friends, I love my pets, I loved my ex-boyfriend, and I love God. I feel these kinds of love in different ways, like any ‘normal’ person. My diagnosed friends and family members can love, too.

I’m not sure where I’m going in writing this. I guess I just wanted to clarify that having autism and Asperger’s does not mean that everyone with this diagnosis/suspected condition is the same. ‘Normal’ people are different to each other, so why the assumption that all autistic people/Aspies are ‘good at maths’ and ‘completely egocentric’ and ‘unable to love’?

Amélie (2002)

“(Amélie) cultivates a taste for small pleasures: dipping her hand into sacks of grain… cracking créme brulée with a teaspoon… and skipping stones at St. Marin’s Canal.”

I first watched Amélie (a 2002 French film) when I was 14, and loved how the small things were taken into consideration. This line just summed it up for me: sometimes all one needs to be happy is to plunge a hand into a sack of grain and feel the small pieces trickle over skin, or to watch a dessert splinter delicately as it’s broken by a teaspoon. I tried to explain this to Mum at the time: she looked confused, and had her ‘Right…whatever you say…’ expression on, so I stopped saying anything for the rest of the film.

I’d forgotten about this until yesterday, when Cat and I were talking about Amélie. I wonder now if Amélie has Aspie traits, although it could’ve just been her bizarre upbringing that made her ‘odd’. I added that it felt great to pour grain/rice/raw broken pasta over hands too, to feel it run between fingers. My brother does that a lot: he shreds raw pasta into tiny pieces, then lets it drop slowly from his hands into a tray. Sometimes I put my hands into the pasta flow: for the two seconds or so before he pushes my hands away for being in his personal space, it feels amazing in a way that’s difficult to describe. (Except when the pasta touches my nails: that feels horrible, as though they’re being scratched.)

In a way, I’d forgotten how good things like this feel: I’ve tried to be ‘normal’ and in doing so, have stopped doing these. Now I’m tempted to go back to doing things like this: okay, so a lot of people might not understand what pleasure I get from pouring rice grains over my hands, but since it does no harm, why shouldn’t I?

I am who I am

Last week I started ‘coming out’ as an Aspie. And you know what? It felt absolutely great!

It started when Liz was walking to campus with me one morning. We were chatting about general stuff, then about my issues. I told her I was depressed and likely to be Aspie, she said “Okay” and advised me on finding a good doctor to do a diagnosis. So that was encouraging.

A few hours later I was talking to Sally and about how varied Asperger’s is (we were touching on it briefly in lectures that day), and I mentioned that I was different to someone else I know with Asperger's. “Oh, are you Aspie?” she asked. “Undiagnosed, but I think so.” “Ah cool,” and then we kept chatting.

Jen said “Oh okay” when I briefly mentioned it, and I got a similar response from Amy. I’m talking to Cat a bit more about how I feel about my ‘traits’, and I think it makes sense that I’m Aspie.

To be honest, I’m relieved that my friends didn’t automatically say “No you’re not”, like some doctors and therapists and clergymen have - the fact that they seem to accept the possibility without making it an issue makes it seem more ‘real’ to me, but in a really good way.

I’ve also started letting a few more traits show: the other day I was walking past a row of trees, and felt such joy in running my fingers along the branches, feeling each individual leaf on my hand (admittedly pulling out the thorns later wasn’t such fun, but it was worth it). Another time I felt like freezing when I was walking home, so I did. There were no cars or people about, and it just felt so peaceful to ‘be’ there in the moment, just standing frozen in place. I’m no longer trying to stop myself from flicking my fingers together when I feel like doing so - if my actions don’t harm anybody, why should I try and change?

Admittedly I’m tempted sometimes when talking to somebody to look away or change the subject or walk away for a bit, but I won’t do those things - to not control these impulses wouldn’t be fair.

So… I’m still on a 5-month waiting list or so. I’m happy enough in my skin at the moment, I think I’ve accepted myself as an Aspie, and it means the world to me that my friends seem to be doing so too.

Assessment History

The day before yesterday, Mum told me about her attempts to get me diagnosed in the past, and her thoughts on why they were unsuccessful (this comes as a result of me telling her about the GP who thought that I ‘wanted’ Asperger’s so that I’d fit in with my family).

So there’s me as a toddler, slow to speak and not interacting well with other children. Mum and Dad take me to a doctor, at one point autism is suggested. Mum’s thoughts on autism at the time (this is early 1990s) were either Rainman savants or people who got locked up in institutions, so she was reluctant. Still, they went to an autism specialist: by this point I’d gone to an osteopath and was on a strict diet regime, and was apparently playing relatively normally with my cousin. So Mum argued then that I was most likely normal, and a note went in my file to say that I was ‘eccentric’.

Time passes, and it’s noticed that I don’t initiate play successfully with children. I am, however, shown to be good at mimicry, so as a toddler I could play with someone else. When I started primary school, it was picked up that while I was getting fantastic grades, I had no friends, and was being bullied. Mum went to the teachers and asked them to speak to my classmates, so for a week I’d have friends until they grew tired of me. I played imaginary games, or would read during breaktimes. My parents still wondered if I had autism, but by now my brother had been diagnosed with severe autism, so that was their priority.

More time passes, and for some unknown reason (unknown to me, or my parents, or the doctors), I have a nervous breakdown when I’m 9. I get a lot better after 6 months on meds, and I see a psychologist four times. Again the issue of assessment is brought up, and I’m given tests and observed at school. While I performed too well in the tests to be considered ‘normal’, my teacher’s report and the observation from a day at school make me appear normal.

“Why?” I asked Mum at this point in the story. She explained her thoughts on this: the teacher had received advance notice that the psychologist would be coming, and for some reason during that week and the week before that, some girls miraculously took a shine to me and let me be their friend. Mum reckons that the teacher had told them to be nice to me, so when the psychologist came to observe me, she saw me being accepted by peers. “Why would he do that?” I asked. Her thoughts as a teacher were that since I was outperforming everyone else in the school, I brought up school ratings, so if I were diagnosed then there was the fear that I’d be moved to a different school, and they’d lose a good pupil. Mum said that she thought this likely, since that teacher tended to be a layabout who’d say that everything was fine (I was bullied for nearly two years everyday, he never said a thing until Mum went to see him) - he got sacked when I was 10, we’re not sure why.

Anyway, after that assessment, once I’m back to ‘normal’ after the breakdown I stop seeing the psychologist and stop taking meds, and a note goes on my file to say that I’m ‘borderline-autistic’.

I started at secondary school when I was 11, and I made a friend. By the end of that first year, we were a group of 4 friends. I still didn’t interact well with my classmates, but I wasn’t too weird either. By this point Mum had tried and failed to get me into social-skills classes (they insisted that she come with me since it’s a family activity, she insisted that she couldn’t since there was nobody else to care for my brother), so she gave me many lessons in maintaining eye contact, and appropriate topics of conversation, and telling white lies. At the end of the year, Mum’s called in to see the head of pastoral care, who’s noticed that I seem a bit ‘odd’ and stare very intensely at people. By this point, given that I have no diagnosis and Mum wants our issues to be kept behind closed doors, she gives the set answer: “She has an autistic brother, she must have picked up traits from him”.

I go through school, still feeling a bit strange and unable to click, but having friends. I found the reports from my assessment as a toddler when I was 14: that explained some things. I never told anyone else, since we were having some family troubles with my Dad and brother at the time. But from then on, I wondered if I was autistic. Reading books - fiction and non-fiction - introduced me to Asperger’s Syndrome, and I could identify with a lot of the feelings described in the books.

I finish school and start sixth form college, and then things finally start clicking into place. By the time I start university, I feel more comfortable in the world, and feel more able to interact with it. I go to university and instantly make friends - I’ve lost friendships too, but that’s a sad part of life. My friends are a mixed bunch, and we’re all accepting of each other for that.

Which leads me to the present day. 20 years old, wanting to find out where I fit into the world, and part of that, for me, involves learning why I sometimes don’t fit into the world. Getting assessed would help with that, I think. Plus this time there’s more knowledge and awareness of Asperger’s, less shame, and so much more acceptance. So maybe I’ll get a more unbiased assessment this time. And hopefully an accurate one that’ll make me feel more at one with myself (I am aware of how hippy-ish that sounds, but that’s the best way that I can currently think of phrasing it).

Gift?

Earlier, Mum said that she thinks that having Asperger’s is a gift. With that, one can be a genius, one can know so much, it’s something special. I asked her if she thought that feeling like you’re in a bubble, if while listening to someone all you can hear is jarbled sound, if you want to talk but the words get caught somewhere between your brain and mouth, if those were gifts. She said no. So then, I asked her, can Asperger’s be a gift? I have good days when I’m ‘normal’. I have great days when I can absorb knowledge more easily, and can use it well. I have bad days when my traits show, or when I feel trapped in my bubble. Bad days are the main part of the ‘gift’, so to me this is not a gift at all.

Knowing

Earlier I was talking to Mum about prenatal testing - Cat had found a blog post where an autistic woman learned that her parents would have aborted her if they’d known she’d be autistic - and what she would have done if she’d known that my brother Christopher, who’s severely autistic, would be the way he is (don’t fret, we love him dearly, he’s my best friend in the world).

Then Mum asked me if I’d thought about getting myself assessed. I asked her why, she said that it would be useful, since Dad had lost out on promotions at work due to his social difficulties (he has Asperger’s), and she didn’t want me to go through that since, as she put it, I can sometimes take things the wrong way or offend people.

There was a part of me that felt hurt at that, I have to say. I do my best to not offend people, and I was sure that I hadn’t offended anyone unintentionally for a while. She disagreed, which made me feel a bit anxious - I’m told I’m polite and friendly by my friends, so to be told by my mum that I can be hurtful, hurts.

Now I’m catastrophising, methinks. I sometimes have depression spells, part of which involves making things seem worse than they are. I wonder if I’m doing that now, but that doesn’t make me feel any better, no matter what the CBT person I see keeps telling me.

Anyway, I told her that I had asked for an assessment, but that it would take about 6 months before the psych. clinic even got back to me (true). I was in a minor state about asking for an assessment, one reason being that I didn’t know what Mum would think. She’s tried to raise me to be normal, has emphasised the importance of my being normal while encouraging tolerance of others (how does this work?), and has scolded me many a time when my traits show. I think the last time I had a really noticeable trait in front of her was a few months ago, when she insisted on cutting my hair, and I cried because I didn’t want it to be touched. Sometimes her fingers on my skin make me feel something like pain, even when she’s just resting her hand on my shoulder - she’s a massage therapist, almost every time she gave me a massage I’d cry and writhe in agony (she got the hint after a few months, much to her dismay and my relief). But that’s going off topic.

So now she knows. And she seemed okay about it. Then she talked about how it would be good for me to have a statement, to show others that when I’m having a bad day, it’s not that I’m a rude person. At this point I was hurting, so I asked her if I could go, then spent the rest of the afternoon in my room half in tears and half trying to focus on my essay.

It’s weird, I’ve just spent the last month volunteering for a non-governmental organisation in Peru, and over there I felt fully ‘normal’, not feeling any traits or any depression spells. And I’ve been back home less than 24 hours, and this happens. I don’t know what it means.

Traits

While I’ve not actually been diagnosed with autism (my last assessment of ‘borderline’ was over ten years ago), there are some ‘autistic’ traits that I believe I have:

Rocking
Flapping
Echolalia
Having the desire to be in a corner
Sometimes not feeling able to/wanting to speak
Feeling like there’s a glass pane between me and other people
Unable to listen to conversations right in front of me - background noise is too strong
Lining things up so they have a pattern
Staring at oddly-shaped objects/patterns, examining them really closely
Clicking my fingers while unaware
Being apprehensive about meeting new people
Running my hands/feet/face over different textures
Sometimes just wanting to do something ‘not normal’, e.g. earlier I walked past a row of stalks and just wanted to crouch in them, to feel them brush.

Since I was small, I’ve been strongly discouraged from doing these things, and I very very rarely indulge myself. But say a few minutes ago, in my room alone at 2 in the morning, I rocked. And it did feel good, in a way that’s hard to describe.

That said, here’re some traits that I have that seem ‘unautistic’:

I always make eye contact
I have an active imagination
I can tell lies
I really do feel empathy and sympathy
I see people as people, and appreciate their thoughts and feelings a lot more than my own
I like new places
I get along well with new people

…but I remember being taught about eye contact, about relating to others, being encouraged to be creative. These things come naturally to me now, and they’re part of who I am, but I sometimes wonder if this is just because the lessons have been drummed so hard into me.

Story short: I saw my GP, and told him that I wanted an assessment, to see if I’m on the spectrum. I was talking about this with Cat the other day, we talked about whether I’d want a diagnosis, what it would mean for me, if things would change after, what I’d think/feel if I was diagnosed as non-autistic. I mean, some days I’m absolutely fine and can get along as well as the next person. And some days I feel the glass pane there, and I can’t find words that’ll make sense, and conversations become a blur of noise. I don’t know why this only happens sometimes, though. I’m rather confused as to what I should do. Sometimes I think “Yes, I’m autistic and don’t really fit into the world in the way that others seem to do”, and other times I think “I’m fine, I’ve adapted to the world well and can live a good life in it”.

Just what am I?