Bullying, Abuse, and Autism: a survey

THE SURVEY IS NOW CLOSED.
Thank you very much to everyone who took part.
Ad hoc results are being tweeted @spectrum_life, and full results will be published in due course.

If you would like to take part in future research, please subscribe to our “research” newsletter (see right-hand column). Your subscription details will not be linked to any survey you subsequently complete, and your anonymity is guaranteed.

Original Post (published 9th January 2014)
Many autistic people experience some kind of bullying/abuse during their lifetimes.

We have compiled a survey, on Survey Monkey, to explore these experiences in a little more detail. If you are autistic, or think you might be autistic, we’d be very grateful if you would take five minutes to look at these 10 questions, to let us know a little about your own experiences. None of the answers you give with identify you in any way, and your anonymity is guaranteed.

How we are defining bullying and abuse:
PHYSICAL abuse doesn’t need to involve black eyes or broken bones; it also includes ANY kind of unwelcome physical contact, e.g. being pushed, hit, slapped, poked/prodded, pinched, spat at, having your hair-pulled, etc. – even if the other person says he/she is “just joking” or “just mucking around”.

PSYCHOLOGICAL abuse includes: being called names and/or made to feel small or humiliated, being threatened, feeling you have to do things you don’t want to do [or can't do things you want to do] to keep someone happy, having your belongings taken and/or damaged, having someone checking your phone or emails, or always wanting to know where you are and who you’re with, being prevented from seeing your friends/family, someone playing ‘mind games’ with you, sulking with you until you give in, being told “you have no sense of humour” or “you are being unreasonable” or “irrational” when you object to any of the above.

SEXUAL abuse includes: you having to endure ANY kind of kissing or touching that makes you feel uncomfortable (even if you are in a sexual relationship with the other person), and/or sexual contact that you don’t want, but feel you can’t say no to (because of threats, sulking, etc.). It includes non-consensual sexual contact with you while you are asleep, drunk, or under the influence of drugs.

Autism & Counselling Poll – Results

Huge thanks to everyone who took part in the Autism & Counselling straw poll (it’s still open if you haven’t voted!). I initially had the idea whilst preparing an essay on research methods (and I wanted to how the results of such a poll varied with sample size), and chose ‘autism and counselling’ as it is a subject close to my heart: after 111 responses, 77% of us have accessed some form of counselling at some time. As Life on the Spectrum is a worldwide community, it is impossible to compare these figures with the general population in any valid way, but the UK government’s Social Trends report for 2007 (1), says that 16% of adults in England had suffered a common mental disorder* in the week before the survey, and and 1.6% had accessed counselling.

For those who are interested, the graph below demonstrates how the results varied according to sample size, producing a 17% difference between ten and fifty responses. The yes-vote seems to have settled at between 75 and 77% after sixty-four votes. I will leave the poll in place to see how (or if) the results change with an even larger sample.

I hope to conduct future research into many aspects life with autism. If you are autistic (either formally, or self-diagnosed), and would like to help, please sign up to our research newsletter in the sidebar! Thank you!


*Common mental disorders (CMDs) include depression, anxiety, panic disorder, phobias, OCD, and post traumatic-stress disorder.

1. Social Trends 40 – Health (pdf)

Autism & Counselling: a straw poll

In an effort to get some idea of whether autistic people access (either private or publicly funded) counselling or not, please take a moment to answer the question in the sidebar to the right. Thank you!

(I plan to use the numbers produced by this poll to demonstrate the accuracy, or otherwise, of sample sizes, for a university assignment.)

I’ll also be doing more research on the efficacy of various forms of counselling, and the role of autism in the therapist/client relationship, later this year. I’ll be very grateful for your participation again in the future, and if you’d like to help, please get in touch via the “contact” tab above, or subscribe to our research newsletter in the sidebar :o)

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!


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 my husband’s graph, to show just how different a neurotypical 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 sensorydirect.com and rompa.com. 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).