The Waiting Game

Based on a recent experience I was involved in involving a couple of autistic individuals I am lucky enough to know.

Waiting. What’s the problem with that, I hear you ask? Well, if you’re autistic then it can be a huge problem. Waiting can – literally – take over your life. Waiting for an answer, a decision, an opinion – whatever it might be, the wait can be an anxiety inducing process of indeterminable time – and this latter can so easily oft be avoided. A simple holding email, for example, might allow a person to engage with life without having their lives put on hold for uncertain periods of time.

What it is about waiting that is such a problem?

Well, first off it’s the importance of the response. A simple question to the predominant neurotype (PNT) might not elicit any particular urgency, but if the answer is of dire importance to the autistic individual then life might stop between sending the email and waiting for the reply. A question that is seemingly innocuous to the PNT might be of desperate concern (for whatever reason) for the autistic individual.

Secondly, the ‘up in the air’ nature of when a response might be coming can play absolute havoc for the person waiting. In this day and age there are plenty of electronic forms of communication, some of which will divulge information such as when a message has been received…and when it has been read. For some people, checking these things (sometimes every few seconds) is the only activity that can take place between pressing send and getting the reply. This is an activity that could be fraught with danger. Akin to waiting for those test results (exams, results from the hospital, finding out something of huge importance) – you wait for the envelope, you wait…and wait…it arrives. Your heart is pounding. Your hands are shaking. You are terrified, excited, apprehensive, nervous, hopeful. You open the envelope. It’s empty. You crash. You’ve run through the gamut of emotions – for no reason. Back to waiting. Imagine this scenario – but instead of waiting for an envelope, the individual is clicking on the internet – every few seconds – to see if there is a reply. That same process, that same range of emotions – over, and over again.

Thirdly – the inability to stop the rumination – the ongoing thoughts that might intrude to the point of not being able to think of anything else. What might the reply be? What will he or she think about me? Will they understand what I meant? Will they misinterpret my words and will I then be in a tailspin of terror trying to work out how to rectify the situation? Sometimes those ruminations can become almost real, so the individual actually processes those negative emotions and anxiety rockets.

As is sometimes the case though, when it comes to the issues that autistic people face, listening to them is a pretty safe place to start. Simple rules might not eliminate anxiety – but may well alleviate it. For example, if my autistic student is due to submit draft work, we might decide to identify a date and time for her to send it to me, so that I can clear my diary well ahead of time so the time she has to wait for a response is minimised. As noted, a holding email may be of huge benefit to some – ‘I’ve read your message, all is fine, I will reply in greater detail tomorrow’ could mean the difference between an emotionally balanced autistic individual on the one hand and a sleep deprived emotional wreck on the other. Or – if you know you are going through a busy time, or will be away from the computer for the day, a similar automatic response might make a significant difference.

Lastly, remember that time goes by at different speeds for different people. You might think that leaving replying to an autistic person within a day or two is perfectly acceptable, as this might be fine for you. What, though, if each second of waiting feels like an hour to that person? I am as guilty as anyone, so to anyone reading this who’s thinking – ‘yeah, but you didn’t reply to me…’ – I am sincerely sorry. I will try harder.

I’m not sure that I have heard (or read) enough about waiting, but I do know the very real impact it can have on some people. So, if you have any choice, please – don’t play the waiting game.

Why do autistics need to be compared to the predominant neurotype all the time?

This has been worrying me a lot recently. The whole notions of diagnosis (or identification which is a term I prefer) through to reasonable adjustments, the concept of disability, equality, fairness – to me a lot of the issues stem from what I see as a fundamental and critical flaw in how autistic people are commonly compared to the predominant neurotype (PNT) as opposed to simply being understood within their own context. One only needs to scan through definitions and descriptors of autism to ascertain just how much judgement of the autistic person there is in relation to the PNT. Impairment in social skills? Read as impairment in PNT social skills. Impairment in Theory of Mind? Read impairment in PNT Theory of mind. The list could go on…and on – the point is that these judgments mostly seem to be a direct comparative analysis of so-called skill sets against a demographic majority – which holds absolutely no logic whatsoever. It’s akin to deciding that the lone dog in a room full of cats should be described/labelled/diagnosed as having impairments in purring, miowing, and looking aloof (slight sarcasm warning for that last sentence by the way). And before anyone gets upset, I am not suggesting that autistics are a different species to the PNT!

Of course the converse is equally the case – the PNT in the main make for terrible autistics! Show me an average PNT who has well developed autistic social skills and I’ll give you a medal (not literally – but I will be very surprised!). And yet the PNT are not labelled as impaired in (autistic) social skills – despite the fact that sitting enjoying company in total silence can be highly logical, immensely satisfying, and deeply enjoyable. The removal of ‘small talk’ can be the most glorious blessing, allowing people to have a sensible conversation without the litter of erroneous communications that bear no relevance to the subject matter. Again, the list could go on – the PNT usually lack good autistic empathy, linguistic accuracy, sensory diversity, the inability to lie, autistic logic…and so on. But are they encapsulated in a deficit-based impairment model as a result? No.

Ok – so I accept that others have written about this very thing, as have I – so I shall get to the point that has been worrying me recently. It’s this: that the autistic person’s success/or otherwise is based on PNT perception and status, as opposed to autistic potential. This scares me beyond belief, as it might mean that autistic children and adults are at a massive disadvantage just because they are able to ‘perform’ at a similar level to their PNT peers. If this is the case, then society is getting things very wrong indeed. Take the following:

A child in a mainstream school, causing no fuss, passing her coursework and exams with average marks.

An employee with no remarkable productivity but with no obvious negative issues either.

A university student, on for a below average second class degree.

One might argue that if all three of the above were autistic, it is unlikely that they would ‘qualify’ for any additional support, reasonable adjustment, application of equality laws and so on – after all, what’s the problem? Well, for me, the problem is that those individuals are being judged/assessed against a ‘norm’ – and not against their own potential. If being autistic is holding them back because of a lack of adjustment – then they are at a grave disadvantage. If, with reasonable adjustment those three could be the straight ‘A’ child in school, the most productive employee, the first class honours student – then are we not being discriminatory by not recognising this and doing something about it?

The same applies to being identified as autistic in the first place. One tends to need to be perceived as disabled in the first instance to ‘qualify’ for a diagnosis – ‘persistent difficulties…impairments…’ etc. – but compared to what? Or, more importantly, compared to whom? What if we radically changed our perception and instead asked the question – how much less disadvantaged might an individual be if we took autism into account, even if there appears to be no issue on the surface? You might be an adult who does not outwardly demonstrate a persistent difficulty in effective communication – but compared to what your potential is, you may be operating at a considerably lower level because autism has not been identified or taken into account. Surely what this means is that how we (society in general) understand and perceive autism should be vastly different compared to current thinking? If we stopped assessing autistic people in comparative judgemental ways, and instead tried to understand how their environments might be disadvantaging them in relation to their potential, we might all of a sudden realise just how many people are being discriminated against simply by being compared to the ‘norm’.

In my opinion one should not have to demonstrate disability, difficulty, or impairment to qualify either for a diagnosis, or reasonable support. If one is at a disadvantage by being autistic in a non-autism-friendly environment, then to me it’s discriminatory not to make appropriate attempts to alter the environment. Only then can we justifiably talk about equality in a meaningful way.

Autistic people deserve to be understood in relation to their own goals and potential, not those of the PNT.