Autism Awareness Day – collected tweets

The Aspie Guide to Surviving a Family Christmas

Christmas is an intense time, even for neurotypical people, and it can be so much harder for autistic people, especially if you are undiagnosed or your family do not accept your diagnosis. There is more social pressure at Christmas than at any other time of year, to “do the right thing”, and you might feel your own needs are being lost in the tidal wave of traditional expectations.

Don’t be afraid to look after yourself. It is not selfish to protect yourself (and others) from the consequences of you becoming overloaded!

1. Schedule some down time: if you’re spending Christmas in company with more people than you are used to, make sure you schedule some time alone, at least once a day – more often if necessary. Tell others in advance that you’re planning to do this, but don’t feel you must apologise for it. Explain that for you to stay relaxed and happy (rather than getting stressed and grumpy) while in company with others, you need to pace yourself, and know you can get away (and recharge your batteries) when things get too much. If they don’t like it, that’s their concern, not yours. Your concern is looking after you.

2. Cut down the input: if you’re expecting to be around small children, consider investing in some earplugs. Seriously! The type used by musicians allow you to hear what’s being said, at the same time as cutting out the worst of excess noise. If you can’t get hold of any of these, regular earplugs are available from all good pharmacies.

3. Watch what you drink: remember how tired you will be by the end of it all, and think about whether you really want to add a hangover to that.

4. Be prepared for change: actively think about how your routine will be affected by the festive season, and try to anticipate any potential feelings of discomfort/distress. Knowing in advance why you’re feeling so unsettled (even if it’s always obvious in hindsight), goes a long way to helping you cope with it at the time.

5. Try to relax: if you’re playing host this year, you’ll probably have everything planned down to the last detail! But try not to let yourself get frustrated and/or anxious if things go wrong, or timings slip. Do not beat yourself up trying to provide the “perfect” day (there is no such thing). And even if you don’t feel the need to make a complete escape, make sure you schedule some relaxation time into your plans.

6. Get out for a walk! Try to get out of the house at some point during the day, however sluggish you feel or reluctant you are to go. Fresh air and exercise will work wonders! It’s also a great excuse to escape (even if you have company) from the pressures of being confined to the house with other people.

7. Get plenty of sleep: try to ensure you get enough sleep in the days leading up to Christmas, and afterwards. There’s always a strong temptation to wrap that last present, tidy that final corner, or prep one more bowl of veg before the big day. If there are still chores to be done, it might be better to get up early and do them in the morning (when you are fresh, and more efficient), than struggle on late at night and then be so overtired that you can’t sleep.

8. Don’t feel under pressure to be “normal”: there are so many expectations surrounding Christmas – about the food you should have, the kind of presents you should give, how you should decorate your house, who you should spend the time with. Yet there is no “should”. If, for example, you have no responsibilies, and just fancy spending Christmas alone with a box-set and a bottle of wine, you do just that. It’s possible that others secretly want to do the same!

9. Remember medication: this isn’t a trite or frivolous suggestion – it’s so very easy to forget regular medication (which could be anything from vitamins to antidepressants) when your routine is disrupted; but if Christmas is likely to be stressful, it’s all the more important to make sure you have all the help you can get!

10. Show this post to others: if you want support to convince others of your need for adopting these coping strategies, consider showing this post to your partner/parents-in-law/friends/etc., so they can see that this is a very real issue, and that their support will go a long way to helping you enjoy your Christmas too.

And remember, in just a few short days, it will all be over for another year!

©Leigh Forbes

Assaulted by the Detail

I was sitting in a meeting, on the first floor of one of a local autism-charity’s support centres, considering that particular room’s suitability for people with sensory difficulties, when my aspie colleague observed how bright the glare from the window was. I couldn’t help adding that the sun’s reflections off passing traffic sent sequential flashes of light across the walls and ceiling. Our neurotypical colleagues smiled, shook their heads, and admitted they hadn’t noticed these details. At that moment, a green flash appeared, and the noise of a diesel engine sounded outside. Those clues, coupled with a particular rattle as the passing vehicle went over a bump in the road, signalled (to me) exactly what kind of vehicle it had been. “Green lorry!” I declared. The others grinned. We noted down “get blind for window,” and moved on to the next subject.

My brain, however, began analysing the tonal quality of the green, and a range of green-lorry images shot unbidden into my head: Asda, Waitrose, John Lewis, the Co-op, Yodel, Tuffnells, Eddie Stobart. The meeting’s attention had now turned to the clutter in one corner of the room, and the need to free up the table for other purposes, but part of my mind had darted off on a tangent, trying to decide which company the lorry had belonged to: the colour was too yellowy for John Lewis, but not yellowy enough for Yodel; too light and too far south for Eddie Stobart; it was a good match for Waitrose, but their lorries are only green front and rear (the sides are mostly white). My best guess was either ASDA, Co-op, or Tuffnells. At this point, something about the rattle returned to my consciousness, suggesting the lorry had been a lighter-weight non-articulated truck, rather than an HGV. This likelihood was supported by the fact that the road outside was a busy, but urban, route, and HGVs tend to take the dual-carriageway instead. One half of my brain had just agreed to put up a noticeboard by the door, while the other settled triumphantly on a Tuffnells 7.5-tonner.

This kind of detail often assaults me. I call it an assault, because I don’t choose to think about green lorries. We aspies can’t help consciously processing a huge amount of input at any given moment, whereas others can just subconsciously filter it out. People often think I’m rude if I can’t hide the fact I’m distracted, which is frustrating; if someone shouted in your face – which is what the green flash was like for me – you’d be distracted too. It doesn’t have to be a sudden event either; a large amount of general input can render me completely dysfunctional given enough time. It’s all about the quantity. Right now, I’m only having to deal with: the light input from four sources (laptop screen, and three lights); the feeling of my legs being crossed; the sound of my typing; the occasional car on the road outside; an ache in my back and shoulders; the smell of casserole wafting from the oven; hunger; and the sound of the children playing downstairs. If one of the kids started crying, or if the casserole began to burn, anyone would notice. But I’m aware of it all now – these things are occupying my attention, yet I can still write. I realise this makes me a good multitasker, something rarely considered an aspie skill.

Fortunately, the meeting I mentioned above was aspie-friendly: if my distraction had been spotted, no one would have taken offence, which is refreshing. So, please, spare a thought for everything else that’s going on in an aspie’s head and, if you spot him going off on a mental tangent, realise his distraction might be conscious, but it’s not necessarily voluntary.

And remember, if there’s ever a quiz round about green lorries, make sure to have me on your team.

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.

Online Tests for Asperger’s syndrome

Having once been through the agonies of wondering if I were “aspie enough,” I’ve written a brief article about online tests, in particular the Rdos test. I’ve included a number of Rdos graphs to illustrate how varied results can be, even amongst formally diagnosed aspies. I’ve also included a neurotypical graph, to show just how different it looks on the same scale!

The page is here: Online Tests.

Why Don’t You Take More Care?

My sister says it was always me who knocked over my coke in the Wimpy when we were kids. I remember exasperated cries of “it would be you” and “not again” and “why don’t you take more care?” But I never knew the answers. Over the years, I developed strategies to avoid knocking over my drink, but it still happens. It seems I was born clumsy, and there’s only so much I can do about that.

I can parallel park and I can sew, but I can’t walk through a door without colliding with it. Nor can I put a mug away in the cupboard without crashing it against the shelf. Nor can I drink a cup of tea without knocking my teeth (or spilling it). My limbs carry a dozen bruises at any one time, only a couple of which I can ever explain. As a child, I was on first-name terms with staff in the local A&E. In short, I’m accident prone. And my small girl is the same.

Proprioception, often referred to as a sixth sense, controls your ability to know where your body is without visual reference to it: proprioception is what lets you touch your nose with your eyes closed. It’s a sense we take entirely for granted; but imagine life without it*. Imagine having to watch your hand as it reaches to pick up that coffee. All the time you must make judgements: not only about where your hand is in relation to the cup, but where your hand is in relation to you. It would be like operating a remotely-controlled robotic hand, except that once you have the cup, you can feel it’s warmth against your skin. However, if you close your eyes, you immediately lose track of the cup’s position, and are unable to bring it to your lips, because you no longer know where it is. Imagine that.

Many aspies have issues with proprioception. This is not the same as spacial awareness – I can easily judge, for example, if my car will fit into that parking space – It’s only a problem with where the various parts of my body are in relation to everything else, including other parts of my body. Yes, I’ve been known to smack myself in the face by mistake.

I am teaching the small girl the strategies I’ve worked out: to keep her cup away from the edge of the table (and not in line with anything she might reach for); to tie back her hair and roll up her sleeves before a meal; to “concentrate on avoiding things in her way” (“look where you’re going” is not a useful instruction for an aspie). But still, she spills her drink, dunks her cuff in her food, and covers her limbs in bruises. Just like her mother.

It doesn’t help that she, also like me, is hypersensitive to touch. We feel more than other people. The oft-cited analogy, of the lightest brush feeling like an electric shock, is not far off. This led me, as a child, to be labelled a crybaby. I never understood why people didn’t understand how much it hurt (whatever “it” was). I gradually learned that an injury didn’t count if I had nothing to show for it, and subsequently never understood why things hurt so much, without leaving a mark.

So I look at my daughter now, alerted by yet another wail of pain, and presented with yet another microscopic self-inflicted scratch to kiss and sympathise with, and I do sympathise. I know exactly how she feels. And however exasperating it is that this is a six-times-a-day occurrence, you’ll never catch me saying “why don’t you take more care?” because I now know the answer: she was born clumsy too, and there’s only so much she can do about that.

Some people find using weighted belts/blankets/lap pads help with proprioception issues. See and See also this great article about making a DIY weighted blanket.
*This topic is the fascinating subject of Oliver Sacks’s article, “The Disembodied Woman,” which is included in the anthology The Man Who Mistook his Wife for a Hat, (Summit Books, 1985. Picador, 2011).

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.