Autism Awareness Day – collected tweets

What’s Wrong with Labels?

People can’t help but label other people. Our fundamental labels of “friend” or “foe” are essential to basic survival, and the rest lead on from there. Subconsiously, we are asking ourselves “is this person going to hurt me?” or “is this person someone I want to become acquainted with?” or “is this person a potential partner?” In order to answer these questions, and calculate the potential threat-levels posed by other people (on all kinds of levels), we first work out how well they match with us: we look at their education, the way they speak, their ages, their clothes, their jobs, their interests, etc. And we label them in our minds. Ask anyone to describe the person sitting next to him, and he’ll say something like, “she’s thirty-something, brown hair, well dressed, middle manager…” or whatever. He can’t describe her (to himself or to other people) in any other way. He has to use labels.

The problem arises when people apply the wrong label. And I fall foul of this as much as anyone else: a mother at my children’s former school spoke in a particularly clipped manner, which I interpreted this as snobbery (the wrong label). I disliked her just for that reason. When someone told me she was foreign (the right label) – a fact that had been impossible to see through her impeccable English accent – my whole attitude towards her changed.

So, having said all that, some people worry that I allow myself to be defined by the “autistic label”. On the basis that I’ll never stop people sticking labels on me, I much prefer to be called “autistic” than all the other descriptives I’ve had stuck on me over the years.

So, there’s nothing wrong with labels, but there’s a awful lot wrong with the wrong labels.

Typical Autistic Characteristics How Society Choses to Label Them How Society Could Label Them
Uncoordinated cackhanded restricted proprioception
Keeping oneself to oneself unsociable private
Stimming retarded harmless
Doesn’t get the joke thick differently humoured
Laughs more loudly than others annoying gets your joke
Says the “wrong thing” rude mistaken
Identifies ways to improve critical useful
Doesn’t understand teasing oversensitive differently humoured
Prefers not to make eye contact guilty retiring
Likes routine and organisation awkward organised
Free thinking dissenting thinks outside the box
Keeps odd hours creepy polyphasic
Wears comfortable clothing scruffy self-caring
Interested in detail pernickety attentive
Uncertain of how to interact standoffish shy
Interested nosy interested
Trusting gullible trusting
Honest tactless trustworthy
Sticks to the rules dogmatic law-abiding
Keen to share ideas opinionated contributing
Happy to talk about interests boring sharing
Prone to anxiety weak has a lot going on
Likes to plan ahead fussy organised
Wary of others paranoid bullied
Hypersensitive to light/noise/etc. intolerant amazingly tolerant

Please help by not perpetuating negative terms, but by encouraging the positive terms instead.

A Mild Form of Autism?




This tweet was prompted by an incident at an autism-awareness event last month. Towards the end of proceedings, I spoke to the assembled company about Asperger’s syndrome being a hidden disability, and how my already considerable difficulties were worsened by society’s expectations of normality. I said I wanted people to understand that, just because I look normal and can (for short, exhausting, periods) put on a performance of normal, there is nothing mild about having Asperger’s. There were calls of agreement from the audience, an autism-friendly round of applause, and I went back to my children – their little faces glowing with pride that their mummy had stood up and spoken.

Next up was a woman who had a son with severe autism. Bristling, she spoke about how severe her son was, yes, very severe, and how you might see the two of them around town, and how you couldn’t miss him because he was so severe… Something inside me died. Even to me, it was clear I had offended her, about which I was mortified, but she had misunderstood me; she thought I was saying all forms of autism are the same, and that I thought I suffered as much as her son. I confess, I nearly burst into tears on the spot.

I hate conflict, and in particular, any division within the autism community; but there is a division, isn’t there? Right there: the devision between people with severe autism and people like me. I can see why their carers think I’m so very lucky: I can talk, I can drive a car, I am married and have children (and a realistic hope of grandchildren). I even have a job. What more could I possibly want?

For the next three hours I considered giving up autism advocacy. I questioned how someone with my lack of subtlety can possibly get across something as important as autism awareness to the general community? Hell, I couldn’t even get it across to the autism community. But a pep-talk from an aspie friend put me back on my feet; I took out my phone, wrote that tweet, and Twitter completed the rescue.

So, sure, Asperger’s syndrome can be considered mild when compared with severe autism. It can be considered mild in the same way as losing a leg can be considered mild compared with paraplegia. But do we refer to amputation as a minor injury? Do we go around telling amputees, “count yourself lucky you’re not paralysed”? No. We do not.

That severe autism exists, does not make my life any easier. And nor do my struggles detract in any way from the enormous difficulties facing severely autistic people and their carers. I’m a huge fan of positive thinking – I can talk, I can drive a car – and being positive helps me in so many ways. But it does not cure me. However lucky I might be in comparison with other people, I still struggle with my own, very real, issues.

So, please, don’t take what I say, then add a “yes but…” and list all the things that could be worse. Please just hear me: I’m not saying there is no severe form of autism, just that there is nothing mild about having Asperger’s.

It’s no Excuse

excuse noun /iks-kūz’/*

1. A plea offered in extenuation or explanation, in order to avoid punishment.
2. Pardon or forgiveness.
3. Indulgence.

ORIGIN: Latin excusare, from ex from, and causa, a cause or accusation.

Excuses are emotionally charged things, in search of absolution. They are what we offer when we’re trying to “get away with” not doing something we know we should have done. They carry a negative quality; I am at fault (e.g. I’m late for a meeting with a friend) and I regret it. As such, excuses are usually preceded by an apology, e.g.: “I’m sorry I’m late, but the traffic was terrible.” If I offer an excuse, it’s because I want you to say whatever I’ve done wrong doesn’t matter, so I don’t have to feel bad about it (because otherwise I will).

reason noun /rē’z(ǝ)n/*

1. Ground, support or justification of an act or belief.
2. An underlying explanatory principle.
3. Conformity to what is fairly to be expected or called for.

Origin: French rasion, from Latin ratio, onis, from reri, ratus to think.

A reason is a statement of fact, which carries no emotional charge; I am still late, but I am not seeking my friend’s forgiveness (even if I start with the socially essential apology): “I’m sorry I’m late; there was an accident and the traffic was terrible.” As it’s clear there’s nothing I could have justifiably been expected to do to avoid being late, the issue is not one for which forgiveness is appropriate, my friend will probably say, “Don’t apologise; it’s not your fault.” It’s a good reason.

This situation is completely different from: “I was late because I didn’t leave enough time to get through the rush hour jams,” in which case my friend (however open-minded she might be) would be justified in feeling annoyed, and think (even if she doesn’t say), “that’s no excuse; you know the traffic’s always bad at this time of day.” This is an bad excuse.

Of these two forms of explanation – the excuse (unjustifiable) and the reason (justifiable) – one is seen as good, the other bad. One requires forgiveness and the other does not. How any particular explanation is received depends on the wronged party’s own life experience and generosity of spirit.

So, when I hear someone saying “he [or she] is just using Asperger’s syndrome as an excuse for not doing it…” my hackles rise. (Sure, the aspie might be milking it to his/her own advantage; but aspies, by definition, are not inclined to manipulative behaviour.) In most cases, it’s likely that the other person simply has no concept of life on the spectrum. Particularly if the aspie “appears normal,” his/her autism is seen as an excuse, an unjustifiable reason, for being unable to do whatever “it” is.

Conversely, more visible disabilities (and the issues involved) are easier for others to comprehend. You have to be pretty sheltered (or cruel) to accuse a partially sighted man of using his blindness as “an excuse”. You’d never blame a deaf man for needing subtitles, or the paralysed for being unable to walk. These disabilities are imaginable: if I close my eyes, or stick my fingers in my ears, I can get some idea of what it is like to be blind or deaf. I don’t need an analogy to explain paraplegia. I can imagine the fundamental issues, and even with my limited “empathy”, I can see any of these disabilities would have a severe effect on my life.

But you can’t temporarily rewire your brain and pretend to be autistic.

Living with autism is hard enough without being made to feel I must justify everything I can or can’t do. Or apologise for it. So it’s important to keep educating others, to gently explain that – whatever their own experiences of life – I can no more “pull myself together” than a blind man can see. Asperger’s syndrome is not an excuse for the way we behave; it’s a reason.


I recommend The Man Who Mistook his Wife for a Hat, by Oliver Sacks, as a fascinating voyage into the world of neurological disabilities – conditions that are virtually impossible for the rest of us to imagine.

*Taken from The Chambers Dictionary, 12th Edition, 2011. I have omitted definitions irrelevant to this post.

#iamaspie

You know that vacant look people have when you tell them you have Asperger’s syndrome? The look so very vacant that even an aspie can read it?

Why do we tell people about our autism in the first place? In my case, it’s because I want them to understand me better; I loathe being judged as difficult or callous or intolerant – when actually I’m making a pretty good job of coping. But I’ve realised I’m addressing the issue in the wrong way: when I mentioned Asperger’s to a new friend recently, the vacant look appeared and he quickly confessed, “I don’t really know what that is.” Apart from the instant honestly (which is refreshing), the scenario is frustratingly familiar; but I haven’t got all day to explain about autism and, let’s be brutally honest (I’m told I’m good at that), my friend isn’t really interested. If he wants to know more, he’ll ask, (and I’ll have to judge, or possibly ask, if he wants the 30-second answer, the three-minute answer, or the hour in the pub over a couple of beers.)

But really, all people want to know is how my having Asperger’s affects them. Some of my close friends are brilliant in this respect: they know to wait until I offer the hug first; they know I’m not trying to make a fuss by asking for the music to be turned down (I hate fuss. Obviously); they know that even a late birthday card from me is a sign of my enormous affection. But they have worked all this out for themselves, and bother to make these small consessions (plus many others no doubt). And I am grateful. Conversely, I am less stressed in their company, and they see more of the happy, relaxed, jovial me, which is what they want. The friendship is strengthened. Everyone wins.

Just a little bit of understanding, and a few tips, can go a very long way. But we spend too much time trying to explain what autism is, and how it affects us; we should spend more time explaining to others how it affects them, and how they can get the best out of us with even just a tiny bit of insight.

To this end, I have chosen a twitter hashtag, and am tweeting tips for better interaction, for example:

But it’s not just about what I want for myself – it’s about AS/NT interaction everywhere.

I am inviting you all, aspies and neurotypicals alike, to offer your own ideas on how we can better get on with each other. Please join in at: #iamaspie.

A-Z of Autism

A is for Autism, Asperger’s, Aspies, Ability, Attwood, Acceptance.
B is for Bullying.
C is for Clumsiness, Communication, Colour, Crowds, Confusion, Claustrophobia.
D is for Detail, Diagnosis, Doctors, Depression, Disability, Distress.
E is for Education, Employment.
F is for Focus, Fascination, Friends.
G is for Genetics.
H is for Humiliation, Honesty, Headphones, Humour.
I is for Ignorance, Intelligence, Interest, Input, Isolation.
J is for Judgement.
K is for Karma.
L is for Light, Loss.
M is for Meltdowns, Misunderstanding.
N is for Noise, Nightmares, Neurotypical, Normal.
O is for Oops, Organisation, Obsession.
P is for People, Pretending, Planning, Processing.
Q is for Qualifications.
R is for Rejection, Routine.
S is for Spectrum, Synesthesia, Stimming, Stress, Solitude, Silence.
T is for Teasing, Texture, Taste, Touch.
U is for Understanding
V is for Validation.
W is for Weird, Wiring.
X is for xx
Y is for Yabbering.
Z is for Zero

I’ve tried to avoid using words that mean the same thing, or represent the same concepts, and have stuck to those that mean the most to me. I’d be interested to know what words best represent your own experiences of autism, either directly or indirectly.

Autism Awareness: a Datum

So I decided, if I am to raise awareness of autism, it would be useful to know what the datum is.

I realised it’s all very well talking to other aspies, parents of autistic children, professional care-workers, and others in the know – but if I wanted to know the level of awareness amongst the general population, I also needed to talk to the man on the street. Short of actually going out into the street (though I might yet do this) the closest I could get was to ask fellow drinkers in the pub. We have a good cross-section of the community in my local, and my responders included a working man, a middle class woman, and a member of the House of Lords (just come in for a quiet pint with his wife, poor bloke). I asked them plain questions, with no leading, correction or comments of my own. I explained that I wanted their perceptions, however prejudiced, ignorant or opinionated. This is what I asked them, and their replies are in no particular order:

If I said I didn’t know anything about autism, and asked you what it was, what would you say?
I don’t know.
I don’t understand it – don’t need to understand it; we’re all equal human beings.
You watch it on TV, and read about it in the newspaper… is it a children-related thing?
Is it a mental illness?
Autism isn’t the same as autistic… is it?
It’s is not physical or physiological, it’s a mental illness (like depression).
Autistic people have no need for emotional support.
Ooh, I’d have to think really hard about that one.
I know more about the mild form of autism – it’s a mental disorder.
It’s about control, OCD, neatness, need for order, emotionally challenged, difficult to mould.
They always have their own agenda.
They are emotionally challenged.
It’s a condition with communication problems – they can be non-communicative.
They can communicate through other channels, such as art.
They are difficult people to care for, because they live in their own world.

Can it be cured?
It can’t be cured, but it can be managed.
You can’t catch it. They’re born with it, aren’t they?
If it could be cured, I think autistic people could lead independent lives.
(No one else had any suggestions about cause or cure)

Do you know anyone with autism?
My daughter tells me she thinks my grandson has Asperger’s syndrome, but that’s not autism.
(No one else said they knew anyone with autism, and I’ve been a regular in that pub for two years…)

Do you think you could identify someone with autism?
No, but if I met someone with autism, I would read up on it – but I wouldn’t ask about it; that would be patronising.
I could spot it pretty quickly.
I wouldn’t necessarily be able to spot it, it would depend on how severe it was.
Thalidomide you can see, but you can’t see autism.
I’d know as soon as someone spoke to me.
I’d be able to tell after a while.

Do you think the onus is on autistic people to integrate themselves into society, or is the onus on society to help bridge the communication gap?
It’s a two-way thing.
Well, they can’t do it by themselves!
The onus is on society (most common answer)

Only one person asked me “what is it then,” and I answered his questions for a minute or so (I still didn’t tell him I was autistic – don’t know why!). He thanked me for explaining and said he was glad to have the knowledge and a new insight.

I suppose the best thing was that when I left, they were all talking about autism.

Where Society Meets Autism

I know this sounds weary, but I am tired of always being the one who has to adapt to any given situation. Because, although people are generally kind and tolerant of those with disabilities, most people don’t even know I have a disability (see previous post). Even when they do, they make no allowances; they still touch me on the arm, joke with me, and expect me to put up with the most god-awful environment without a murmur of dissent. Even my (otherwise supportive) husband groused at me recently, “why do you have to always take things so literally?” Er… hello?

Okay, I accept most people don’t know anything about autism (except what they’ve learned from Rain Man and reading the Daily Mail), and I can’t realistically expect them to understand all the issues I have to deal with on a day-to-day basis. But if they’ll go out of their way to help someone in a wheelchair (as they should), I wish they would do it for me, just sometimes. In short, I’m envious of the care shown to those with more obvious disabilities, and wish people could have a greater understanding of how autism affects my ability to interact. All day. Every day.

But, no. I’m expected to fit in, to shut up and put up with it all. Just as the wheelchair-bound used to face narrow doorways, head-high cash machines, and stairs. I applaud society’s gradual drift towards a greater understanding of disabilities, but I can’t help wishing it would be our turn sometime soon. Unrealistic, I know, but I would love it if people didn’t automatically think I was being difficult. I would love it if I didn’t have to explain to my son’s teacher that he was upset not because he’d been told off, but because he didn’t know why he’d been told off. I would love it if those with autistic children weren’t treated like bad parents. I would love it if people said, “Oh, you’re autistic, is the lighting okay in here?”

Feel free to make use of the picture!

Finally, it All Added Up

 
I didn’t do well at school, and I never knew what I wanted to be when I grew up. It wasn’t until after my diagnosis (at the age of forty), whilst reading the list of suggested professions in Tony Attwood’s The Complete Guide to Asperger’s Syndrome, that I finally realised what I could have been. I wished someone had suggested [I'll tell you in a minute] when I was thirteen…

But back in 1983, I was taking a revolutionary careers-assessment test… on a computer! The idea was that this computer… thingy… (controlled by a specially trained operator) would assess your answers to pre-designed questions, chunter away for several days, then spit out what it thought would be your best career choice. I remember struggling with the questions – it was a load of nonsense as far as I could tell – and I could only mutter at the end that “I don’t want to work with people”, and “I quite like animals”. The answer? – I waited days for this – that I should be a animal-testing lab technician. I can tell you, it took me a long time to forgive computers for that.

So, after spectactularly failing to be a Customer Service Advisor for the Nationwide Anglia Building Society (how’s that for inappropriate?! Lasted 13mo – my only ever ‘proper’ job), an electrical-components assembler (16mo), a gardener (1yr), a groom (2yrs), a car mechanic (2yrs) – some of these concurrently – I knew what I didn’t want to be. I should have looked more closely at what I did with my spare time.

I had forgiven computers when I discovered The Spreadsheet. How could I not, when suddenly I could generate colourful, accurate, gorgeous tables and graphs of everything and anything, in an instant: from the progress of my diet, through kakuro tables, and on to tracking the kids’ temperatures during illnesses. It should have been obvious all along, but it took until I saw that one word in the back of Tony Atwood’s book… Statistician.

It wouldn’t have been an obvious choice at the age of thirteen; I hated maths at school, thanks to the singularly uninspired droning of a woman whose name I have mercifully forgotten: drone drone sine theta over drone divided by drone drone all to the power of drone drone drone. Enough to make you rip your ears off. The following year we had some bloke who wrote so quickly it was all I could do to catch the notes – as they came back under the bottom of the roller blackboard – before he wiped them off again. And wrote down some more. Never had time to actually listen.

So, with my youngest now at school, I started a part-time OU-degree last month (BSc in Maths & Stats), and am pleased to report that – having watched my kids in a sweet shop a few days ago – I am as happy as that. Perhaps it has become my new obsession, to spread out the workbooks, sharpen my pencil, and dive into linear recurrence sequences, but it’s been a long time since I felt this content. Now I have the pleasure of my own (silent) study, with the Venetian blind swivelled to ‘closed’. I have coffee (latte, with chocolate sprinkles, no sugar), and a supply of almond slices. The room is devoid of vicious boys trashing my stuff, and bitchy girls (stage) whispering behind my back. Speedy-writing man died many years ago, Mrs Drone* isn’t here, and no one will give me detention for forgetting my homework (again). All is calm, and I am finally loving my education.


*I remembered her name, and Googled it, finding this comment about her: “…she got me threw my O Level.” Says it all, really.

Education. Education. Education.

 
My Asperger’s diagnosis has brought many issues to the fore, not least my pitiful state of education.

Despite my love affair with learning, I have only the barest formal qualifications. I try not to be bitter about the delay in my diagnosis and that I received no support at school, either educationally, or pastorally: it’s hard to study when the girl behind is flicking Tip-Ex in your hair (again) and the teacher is laughing (again) because she’s too incompetent to do anything else.

I escaped the savagery of school at fifteen, with the minimum qualifications. My parents were horrified, in a predictably middle-class way, and packed me off to sixth-form college threatening withdrawal of all my human rights. Having had enough of being pushed around, I left home.

I stayed on at college though, and did manage to gain an A-level. You see, I still loved learning, it was just life I couldn’t cope with.

I lasted 13-months in the workplace (nuff said). After three years of self-employment, I gave in to the realisation that I had to get more qualifications; £90 a week was just not enough to live on. Even then.

And so to university. Again I loved the learning; but again I couldn’t hack the rest of it. I had a breakdown after three years, and dropped out with nothing to show for the bad taste in my mouth.

I’m still scraping a living. I sometimes wonder how different life would have been if I’d been diagnosed as a child, but I don’t believe in regrets; I believe only in moving forward from this point.

It’s taken me fifteen years this time, but I feel ready to give education another go; this autumn, my youngest will be starting school. And so will I. Wish me luck. I want to get it right this time.