A bit about Asperger’s and how it affects me

It’s very hard to have Asperger’s when you’re a highly-intelligent person who is able to mask it (though only through incredible, exhausting, constant effort). Especially when the mask falls, when you’re unable to keep it up anymore, and people get a glimpse of your reality and don’t know what to do about it.

I write about Asperger’s a lot. But there are still some things I don’t explain about it, and I think I should. Here is some more stuff about how Asperger’s affects me. (Note: this is not a comprehensive list. I could have written three times as much. But it would have got boring.)

And people who have known me a long time, since before I had this diagnosis, may be confused about how I’m now categorising things that I used to see differently. Just know that I have found it so helpful to have a diagnosis and to learn that these things about myself do not mean that I’m broken, or wrong, or ill. They mean that I’m different and that the world doesn’t cope well with my difference. Getting a diagnosis has been the most helpful thing for my self-image that has ever happened to me.

Please note: Do not tell me you understand, unless you have Asperger’s or autism too. The likelihood is that you may think you do, but you really don’t. Instead, please listen and learn. In return, I will listen and learn about your life, about the things that are relevant to you. I have a hard time when people say “I do that too, and it’s normal.” Usually that means they have not understood the extent of how difficult I find these things. Instead of ‘I understand’, consider saying ‘I hear you’ or ‘I’m listening’. Thanks.

– I get very tired from ‘pretending to be normal’. 

Trying to act like a neurotypical person is exceptionally hard work. I have to think about every single word I say, every gesture, every action, every aspect of social interaction, and more. I have to calculate things like when to speak in a conversation (every time, which in even a five-minute chat can be exhausting). I have to manage my emotions to a very careful degree – they make me do things that people respond negatively to, but I don’t know what those things are or how to avoid doing them, so I spend a lot of time sitting quietly and trying to work out if I’m showing any sign of emotion or response and whether it will upset people. I often go too far the other way and talk and talk and talk, sometimes inappropriately for the situation I’m in.

I don’t understand sarcasm, although I have learnt about it by rote and through a lot of negative encounters with it, so now I can sometimes recognise it – but it’s always painful. I don’t understand most metaphors or analogies, and I have to pretend that I do, even when I’m deeply confused by something that someone has said (which could be something as simple as ‘I’m so tired that I’m about to drop’ – does the person mean it literally? – figuring this stuff out can take up all my mental and emotional resources in a conversation). My tone may be inappropriate, because I don’t understand about tone and what’s wrong with the words I’ve said, or what they may communicate in the mysterious word of the non-verbal. (If you think I’m being aggressive, please ask me what I mean. I probably don’t intend to be!)

– I can’t easily follow (or understand) social rules and conventions.

One of the worst things here is when someone asks ‘How are you?’ First of all, I’ll tell them, whether they really want to know or not. Secondly, I always, always forget to ask about them. Social niceties are not easy for me. It’s not that I’m not interested. I’ll ask all sorts of things about the other person when it’s relevant to what we’re really talking about. I just can’t remember the rules. I won’t ask about your day or inquire about your children’s health. Remember: it doesn’t mean I don’t care. Tell me something real about you, and I’ll be fascinated and want to know more. I just really have trouble with small talk. Get to the point!

Earlier this week I had a great chat with an autistic person who is doing research that overlaps a bit with mine. We didn’t start with social niceties. We dove right into the details of our work, our lives, our research. Half way through the conversation I realised I hadn’t asked the other person anything about her life, so I asked a thing. But a thing that was relevant. I still don’t know anything small-talk-ish about her – where she lives, whether she has a family, what else she does other than her research. I know the important things, the things we were there to talk about. The rest I’ll pick up at some point, if I ever need to know. (Does it really matter anyway? If it’s important enough to her, she’ll tell me. If not, we’ll keep focusing on the big stuff.)

Relatedly, you may find I don’t make sense during a conversation. This is usually because I start talking about something that I think is relevant, but other people don’t understand my thought processes. Similarly, I very regularly misunderstand the meaning of others’ speech. Again, I spend a lot of my time trying to pretend I’ve understood. Like a deaf person pretending they’ve heard so that they don’t ruin the conversation, I may just nod and smile a lot, but not have a clue what you mean. I’m trying to learn to say “Could you please rephrase that?” – but it’s hard, especially when people get frustrated with me for not understanding.

– I have cognitive difficulties.

It can be very hard for me to get people to believe this one. I don’t *seem* cognitively impaired. But I am. I have some serious memory problems (please don’t be offended if I forget your name or something you’ve told me about yourself). I also find it very hard to recognise faces, which means that if I meet you for the second time, I may forget that we’ve met before. Please excuse my constant “Have we met before?” type questions. (I’ll soon remember, when we start talking.) I also have some theory of mind difficulties, which means I spend most of my time trying to work out other people’s intentions and getting it wrong. (It is exhausting.)

– I have overloads and meltdowns.

This is one of the most difficult things about Asperger’s. Out of nowhere I can get sensory overload or emotional overload that can lead to a meltdown. At which point I start looking and sounding like a child having a tantrum. I find this so embarassing, as a professional and an adult and so on, that I usually do my best to disappear and have these on my own. I never, ever want anyone to see, because it will affect my self-image and your view of me. But at the same time, I often secretly wish someone would help… 😦

– Wishing I wasn’t like this affects my mental health.

I experience obsessive thoughts, especially over ‘getting things wrong’ socially or otherwise. (Spending 24 or 48 hours being able to think about only one thing, literally, is not fun. It happens a lot.) I have high anxiety, which often comes out in more obsession – I may only be able to talk about one thing for a few days, and that can seriously piss others off. (SJ knows this one well.) It can look like I’m only thinking about myself, when in fact, I just want to put my mind at rest about a thing that’s worrying me (which can be anything from that cable on the floor that someone may trip over, to a thing I need to fix, to the health of another person and whether they might die…) I get a lot of depression, including over not being good enough.

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I share these things on my blog, not because I want attention (in fact I spend my life trying to avoid drawing attention to myself and trying to avoid people noticing I’m different), but to avoid misunderstandings. It’s the worst thing in the world when I get it wrong – when I get anything wrong – and offend, upset, frighten, confuse, irritate or frustrate someone. I don’t want to do any of things.

But at the same time, I wouldn’t want to be ‘normal’ either. I am different, and that’s good. The problem isn’t with me. It’s with the society that expects me to behave in a certain way, to fit in, and demands things from me that I can’t give – not without exhausting myself and spending my life pretending to normal. As you can imagine, the result is often intense anxiety, depression, and worse. But it shouldn’t be. I shouldn’t have learnt to hate myself for being different. I should be able to love and appreciate the beautiful variety that I contribute to in the world.

Fighting to Protect University Mental Health/Counselling Services

I have an article up at the PhDisabled blog, about the media debate currently going over student mental health services in the UK and how they are overstretched and underfunded.

Disabled PhD students are dealing with a lot at the moment. Apart from the ongoing academic disablism that we always face (see the #academicableism feed for many, many examples), there are specific situations dragging us down during this age of austerity. Student Finance England is finding ways to delay and turn down students’ applications for Disabled Students’ Allowance. (Anecdotal evidence includes my own fight to get it back – evidence of my disability that was always accepted in the past, has this year been refused. Talking to others, it seems that I’m absolutely not the only one.) Tuition fees are rising, which further excludes already-excluded disabled students, since disabled people are among the poorest people in society and are only getting poorer under the current government regime. And now there’s a crisis in the funding of mental health and counselling services based in universities.

The protection of our services at universities is a priority in these days of increasing exclusion – especially mental health/counselling services. Not all students with mental health problems would consider themselves disabled, but many would. As I say in the article, UCAS evidence suggests that increasing numbers of people with long-term mental health problems are applying to university in recent years. Meanwhile, non-disabled and disabled students alike deal with the mental health difficulties that can arise from stress at university. And disabled students face a whole lot of stress.

That’s why I’m arguing here that we need to talk about mental health services at universities and how they are under-funded. Unlike some university representatives, who apparently would rather we didn’t.

Cross-posted to Uncovering the Roof

That DLA Form

I fell in the kitchen while holding a hot (well, warm) cup of tea yesterday. I broke a plate and have strained some muscles. Nothing serious, but it could have been. My joints dislocate, and I have a lot of trouble getting up from the floor, and I was alone for the next five hours.

I attended an utterly fantastic disability studies conference last week – the Lancaster Disability Studies conference at CEDR. I plan to write about various things that came out of it, soon. For the purposes of this post, though, I’m musing on how I had to bring my partner as a PA, and how they had to take three days off work (out of holiday time, of course – no unpaid leave for carers), because I no longer qualify for direct payments for carer-type support, for financial reasons. I’m assessed as needing 25 hours of care per week, but I can’t actually have that.

I’m about to start my Disability Living Allowance (DLA) renewal form. For anyone who doesn’t live in the UK, and therefore doesn’t know about this, DLA is a benefit to help you with the costs of disability. It’s not tied to whether or not you work, but to how your impairment affects your need for care or mobility support. The DLA form is a huge, distressing form where you have to detail every part of your life in which you need care support and/or have mobility problems. Everything from how you are supported on the toilet, to what kind of help you need getting on and off buses. It’s mind-blowingly invasive. I was in tears just reading the bloody thing when it first arrived. Last time I had a renewal, I wrote 60 pages on this stuff. As I recall, my DLA form ended up longer than the Master’s dissertation I was also writing at the time.

Margaret Shildrick and Janet Price write about the DLA form and the way it embodies power relations within the bodies of disabled people:

The welfare claimant is controlled not by a display of external coercion but by continuous surveillance and by the insistent demand for a personal accounting that fits the rigidly constructed parameters of disability. The subject herself effects a normalising judgment on her own modes of being… [She] constructs her very selfhood in the process of normalisation. (p.436)

They go on to argue that disabled people then engage in self-surveillance through the DLA form, examining their own life and behaviour in damaging ways.

What kind of self-surveillance? Since ‘austerity’, perhaps more kinds than Price and Shildrick could have imagined in 1999. There’s the benefit fraud hotline that encourages a Big Brother-like, spying-on-your-neighbour approach that means that I wouldn’t dare leave the house without a mobility aid on a good day. (I don’t get seen on a bad day, of course, when I am in bed behind curtains where neighbours can’t see me.) The highly misleading headlines that talk about fraud in inaccurate terms, focusing on benefit cheats rather than on their own role in government anti-welfare propaganda. Other propaganda like the TV programme Benefits Street. The government’s own constant talk of ‘cheats’ as a distraction from their dismantling of the welfare state. All of this is going to be running through my head while I fill in the form that will determine my future circumstances in so many ways…. and it makes me very afraid. I’ve even considered not sending in my renewal form, and letting my DLA lapse. I won’t, because that would be really unwise – but the fact that I’m even considering it is quite scary.

So these two situations, the fall yesterday and the partner-supported conference last week, are on my mind. They’re two of the things that I have to include in my detailed self-surveillance through the form itself, my constructing of myself as disabled. I’m fairly certain that, even if I describe all the dangers, complications, pain and general failures associated with my ‘leaky body’ (to steal a phrase from Shildrick), I still won’t make much sense to the government agency responsible for deciding if I’m ‘disabled enough’ to continue to get my current rates of DLA. If they can even begin to get their heads around the fluctations in my extremely weird set of impairments, which don’t fit the way that disability is socially constructed by the state – as Shildrick and Price explain so well.

Which means my life may be about to change even more radically than when I lost the funding for my carers. I could well lose the car that I lease with my mobility component of DLA, as well as everything else that DLA is a ‘gateway’ for: mostly things that cost ‘the taxpayer’ nothing, but which enable me to access this hostile world full of stairs, and crowds, and buildings I can’t get into, and trains that aren’t on the same level as platforms, and enormous car parks that I can’t walk across, and people who are highly stressful, and toilets that don’t accommodate me, and sorry you have to go round to the back entrance, it’s only five minutes’ walk away

And even if my life doesn’t change in these ways, it has done for many, many people. As the government gradually replaces DLA with Personal Independence Payment (PIP), there is talk of huge numbers of of people losing this crucial allowance that gives them access to the world. Right now, the delays in processing PIP forms mean that hundreds of thousands of people are receiving nothing while they experience delays of at least six months and sometimes more, with people turning to food banks and charities because of the extra costs of disability. Even the government has said that’s unacceptable – but right now, that’s where we are. And if/when this situation is resolved? Significant numbers of people are predicted to lose their disability cost-related benefits entirely.

So I’m only one person, and I’m not that important, really. But with cuts to Disabled Students’ Allowance on the horizon, and the prospect of losing some or all of my DLA, and having lost my funding for carers, it does feel a bit like the state is out to get me. I’m starting to wonder whether I’ll cope well enough to continue with my PhD. I think SJ and I will probably find ways – we’re awfully resourceful, and SJ is amusingly creative when the excretion hits the air conditioning unit.

But I still don’t want to fill in that DLA form.

I referenced:

Price, J. & Shildrick, M., 1999. Breaking the Boundaries of the Broken Body. In: Price, J. & Shildrick, M. Feminist Theory and the Body: A Reader. Edinburgh: Edinburgh University Press. 432-444.

Derailing

I wanted my first proper ‘return’ post to be about something meaningful. The way Asperger’s has been (possibly incorrectly) related to the shooting in California, and what that says about the Othering of neurodivergent people, for example. Or the cuts to Disabled Students’ Allowance which are going to further exclude a group of students who are already extremely marginalized in academia. And hopefully I’ll come back to each of those topics. Continue reading

That Which Has Changed

Well, here I am. Shiny new blog. I’ve copied a lot of my old posts since 2008 over from the old blog (not all of them, because writing from more than 3 years ago can be very embarrassing). It’s strange, reading through them. So much has changed, and yet so much has stayed the same, when it comes to disability rights. The old blog will stay up, including the earlier posts. Continue reading

‘The language of shirkers and scroungers?’ Talking about illness, disability and coalition welfare reform – Disability & Society


Picture: protesters at today’s ‘Hardest Hit’ march, carrying a sign which is partly written in Braille. It reads “We’re being —- by the government.” Someone has written a translation of the Braille word below it: “shafted”. Photo copyright Lisa Egan.
Continue reading

Bill on abstinence-focused sex education, for girls only, passes first reading in the Commons – The F Word

See Liberal Conspiracy for more on this.

I’m with these groups’ bloggers when they say that we have to unite to fight this. I think this means NOW. We cannot let a victim-blaming, misogynistic law affect the way young women are educated and socialised – especially in a society where the rape conviction rate remains horrifically low and one in four women experiences domestic violence. Continue reading