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.

For the love of inclusion?

I thoroughly enjoyed the coffee I had with a parent of an autistic child earlier on this week. I was far less enamoured, though, with the subject matter of our conversation. I say conversation – mostly it was the poor parent relating to me what the current circumstances were for her son who ‘attends’ a mainstream school. I deliberately put attends in inverted commas – I guess you’ll soon see why.

He (the autistic child in question) has a place at a mainstream primary school.

He is very bright and frequently demonstrates that his academic abilities are way higher than might be expected for his age.

He appears to be under massive amounts of stress and it takes a monumental effort to get him into school.

While at school his ‘behaviour’ is such that he is not allowed to be within the vicinity of other children.

He is frequently barricaded in a room.

He frequently injures himself such is his distress.

When he is unable to make the considerable effort to force himself into school he is classed as a ‘school refuser’.

The Local Authority tell his parents that they have a policy of inclusion, and that he should be attending the mainstream school.

This is not an isolated example; he is not the only child in the country having this experience. I’m not saying most autistic children experience anything like this – but no child should have to suffer like this.
The dictionary definition of inclusion is ‘the act of including’ or ‘the state of being included’. This child is not being included; quite the opposite – he is being segregated in possibly the most extreme manner imaginable. In fact, the very policy of ‘inclusion’ in this instance seems to be leading directly to exclusion. I thought that the days of assuming that inclusion meant ‘integration’ were long gone – sadly, not for this child.

At what point will Education Authorities understand that ‘mainstream’ schooling is not always the aspiration? That in fact, what we should be striving for is far less tangible and yet far more meaningful – first and foremost, the well-being of the child; the education must surely come second to that and if well-being is not being met then surely there must be an acceptance that the placement is not the correct one for that child? When I deliver training for Inset days I am so often told by teaching staff – ‘we simply can’t provide the support/strategies/environment that the autistic child requires’ – at which point I tend to think, ‘well, if that is case, why is the child still here?’ It seems to me that teachers are openly acknowledging that their school – for whatever reason – is not the appropriate environment for the child – so why is it that there is so much pressure on the child and the parents to do everything in their power to continue to go to that school – and, far more importantly, at what cost to the child’s well-being? However important education is, good mental health must surely be a priority. And make no mistake – traumatic experiences at school can certainly have a longer term impact on an individual’s mental health. We know, for example, that suicidal ideation and attempts are higher within the autism population – and levels of pathological anxiety are vastly higher within the school age population compared to non-autistic peers. If simply being at school is contributing to those levels of anxiety, then shouldn’t something be done about it?

The impact of a child being forced into an environment that is ostensibly ‘inclusive’ but in reality is anything but can be devastating. And if the alternative is to brand the child a ‘school refuser’ – this sends a very clear message. The message is that it’s somehow the child’s fault; they are the one to blame; they are the ones refusing the school.

So – what is the alternative? If we are going to accept that the autism spectrum includes a vast range of individuals with differing needs, we equally need to acknowledge that those needs may require differing teaching and learning opportunities. Alternative schooling need not be expensive, nor need it be exclusionary – as the National Autistic Society note, ‘some children will be able to have a more inclusive experience in a specialist setting‘. Specialist need not be synonymous with expensive.

The point being, inclusion should no longer be measured in relation to accessing a mainstream school. So when a child is clearly not in an appropriate setting, please don’t assume that inclusion in mainstream is the ‘gold standard’ – for some children, nothing could be further from the truth.

‘Real’ inclusion should be based on well-being, equality, happiness – these matter. Being shoe-horned into a mainstream environment under the auspices of ‘an inclusive society’ without taking those things into account – that isn’t what autistic children should ever have to face. Mainstream can be ideal for some; but traumatic for others.

Why???

As always, these are simply my thoughts only…

I am so frequently astonished at just how much ignorance there is in the autism world. I find myself questioning, over and over again – why, why, why? Surely – surely – it’s not that complicated? There isn’t that much that one can say that is irrefutable when it comes to ‘statements’ about autistic children and/or adults, but equally clearly (I think) it’s not too difficult to understand how much is so wrong in our current society, so I feel I have the ‘right to write’:

Why are autistic children told that their future will be bleak…when there is absolutely no way on earth that anyone has any clear idea of what the future holds? Shame on any professional who professes to have a crystal ball and pretends that they can see the future.

Why are autistic people branded as having no sense of humour…when the opposite is so clearly the case for so many people?

Why are autistic children deemed inferior simply because they find communicating verbally problematic…when in many cases if the rest of the world took the trouble to learn their ‘language’ then communication could be as effective as talking?

Why is anyone seeking to ‘prevent’ or ‘cure’ (eradicate?) an entire, rich, resourceful, enlightening population without whom who knows what state the world would be in?

Why is honesty seen as something that should be divided up and only given out in segments, while the rest of the time lying is somehow ok? We tell our children – over and over – tell the truth, honesty is a virtue – and when they speak their honest minds they are told “you’re being inappropriate”…”you’re rude”…”you’re too honest”…

Why are so many autistic adults denied an identification of their very self – a diagnosis of autism – when it can be such a meaningful and life-changing experience?

Why is glorious solitude forcibly disrupted for the child for whom others have decided that ‘peer relationships’ are somehow more important than low levels of anxiety?

Why is there an expectation and sense that ‘fitting in’ is a desired and positive state of being, while acceptance of difference remains a pipe dream for so many, leading to debilitating and crushing mental health problems that could be avoided?

Why are autistic children and adults told – “no, you can’t be autistic, there’s nothing wrong with you” – as if there was something inherently ‘wrong’ with being autistic?

Why is inclusion more about physical integration and school attendance rather than acceptance and flexibility to meet different needs?

Why are crucial employment opportunities denied to so many autistic adults as a result of the extreme disadvantage individuals are at because of typical traditional recruitment, job descriptions, and ways of managing employees?

Why are parents sent on generic parenting programs as a means to reducing difficulties their autistic children are facing?

Why is there such a lack of understanding that many problems faced by autistic people are not because of their being autistic, but because of others’ lack of understanding?

Why do research funders habitually ignore or not engage with the autistic population when identifying what research needs to be undertaken?

Why are parents forced to spend considerable time and effort in fighting for their children’s rights when all they want to do is spend time supporting their children?

Why are there so few roles that demand high levels of autism understanding when it is clearly so important to the autism community?

Why are children sometimes forced to behave in ways that are actually painful to them – physically, mentally, and/or emotionally – just so they behave in ways that are common to their non-autistic peers?

Why is there an ongoing drive towards ‘autism awareness’ – as opposed to genuine understanding?

Why are there so few autistic individuals involved in all the strategies, training, policy development, legislation, and academic awards that relate to autism?

Why is the constant message to autistic individuals and their parents still so often rooted in disabling negative terms such as impairment and disorder?

I don’t think I am a particularly bright person. I think these questions are pretty simple. So – why – why! – are they still needing to be posed?

The Diagnosis Debate

Should I or Shouldn’t I?

I am not claiming any expertise here; the following is simply a brief commentary on recent Twitter activity with purely my own perspective/understanding/thoughts…please read all the way through before any adverse reactions set in!

There has been a simply splendid amount of debate in social media of late concerning autistic individuals with an ‘official’ diagnosis (i.e. presumably a medical, clinical assessment followed by a ‘yup, you’re on the spectrum’ kind of response); sadly – very sadly – there have also been some hurtful comments flying about between individuals who oppose one another in relation to their position. My summary of the ‘discussions’ is as follows:

  1. Some people are extremely opposed to anyone claiming to be #actuallyautistic without some kind of professional (i.e. medical) corroboration, following what would (hopefully) be a thorough and objective assessment;
  2. Others claim that it is their lives, their knowledge, their research, and therefore their absolute right to identify as autistic irrespective of any external assessments;
  3. There appear to be a small number of people who may be guilty of jumping to conclusions based on taking a simple online test, or going down the road of ‘ooh, I did that once, maybe I’m autistic then…’ – I have to note, this particular group of people are possibly well meaning, fairly insignificant (statistically) and – while horribly frustrating and possibly even inadvertently patronising – may simply be demonstrating staggering ignorance rather than setting out to cause any harm, so we’ll leave them to themselves for the moment, if that’s ok…;
  4. From what I can gather there may also be a significant minority who deliberately choose to claim autism who actually are not – perhaps by being misguided, perhaps as a result of other neuro-diversities, but possibly even for a deeper, and darker reason – to cheat the system, manipulate, maybe feed some narcissistic habit – these are suppositions only, but others on Twitter have indicated as such and this group should therefore be acknowledged.

Ok – taking these point at a time:

  1. It is my view that one is autistic from birth – and from my understanding the vast majority, if not all, of good, validated research tells us the same. Therefore, one could say that the debate is a pretty simple one – the actual diagnosis does not make one autistic – however, it does corroborate it (at least if the assessment is an appropriate one). The debate, though, is more than simply what one might be able to claim – I accept that one can only claim #actuallydiagnosedautistic following assessment, but to depend solely on the assessment itself is surely a dangerous game to play? We know that whole swathes of the population remain undiagnosed, and we know there are individuals fighting for a diagnosis (or, in my preferred parlance, identification) who get turned down – not because of an absence of autism, but because of an absence of decent services to provide that identification. Where do these folk fit in? They are just as autistic as those with a formal identification, they just don’t have the report/letter/medical affirmation. I don’t know the answers, and I absolutely understand the various arguments, but hey, there is a problem here denying someone their own essential identity, surely? BUT – who is the assessment police? At the moment, one argument that doesn’t appear to have arisen is who knows best? Some adults – with an eventual diagnosis – have been to more than one professional only to get different opinions – which means that at least one professional has got it wrong! What about those autistic individuals who are denied an identification as a result of all those things we already know about in terms of a flawed system for identification? I know that there are arguments suggesting some people will carry on visiting professional after professional until they hear what they want – but how do we know that this isn’t because of the issues with getting a recognition, rather than there being nothing to recognise in the first place? Similarly, for those ‘self-diagnosed’ – is there an expectation that they need to corroborate their findings? Prove to the community that they’ve done their homework? Show their workings out? I worry about this, as I genuinely believe, and have been taught (by autistic adults) that if one genuinely believes one’s self to be autistic, and have read widely on the subject, then the likelihood is very strong that you are.
  2. Following on from (1) – of course this isn’t something that anyone should take lightly, but really – do that many people actually claim autism without due consideration, careful thought, taking and heeding advice, and concluding with a clear rationale? And, if so, what’s the problem with that? People are ‘allowed’ to decide whether they are gay without any formality – and, interestingly will be covered under the Equality Duty – yet autistic people are not afforded the same privilege. As someone once said to me – “why should I have to go to an NT doctor just to be told who I am, when I already know who I am and indeed know far better than him!” But there is a problem, whether one likes it or not. Current medical guidelines indicate that one has to be assessed by specific professionals in order to qualify for a diagnosis; therefore, unless one does go down that route, then officially one cannot claim a diagnosis. Aha – so here we are getting closer to one of the issues – that of the claim. I suspect many would argue that a claim of a diagnosis is not the same claim of being autistic (nor even vice versa). Is it as simple as semantics? Probably not, but it is worth pointing out…
  3. As already noted, not for now…
  4. Now – this is, for me, the major problem and quite possibly the main reason why there has been such heated discussions. If there are, indeed, a few people who deliberately set out to claim #actuallyautistic who do not ‘fit the bill’ – and, presumably, know they would be ‘found out’ should they go for a formal assessment – then a spanner the size of which is substantial is thrown into the proverbial works. All of a sudden the innocent get tarnished, those who have had the formal assessment are the only ones ‘protected’ as such, and the community divides. This should not happen; those few (and I really do hope they are very few) should not be allowed to influence the amazing community that exists in social media – the one of support, acceptance, understanding, sometimes profound disagreement – but done in an accepting manner – to have this threatened by a few individuals who are presumably a far cry from the integrities shown so often within the autism community, is devastatingly sad. It is in this context that I can absolutely see both sides – I suspect knowing there are some out there who are claiming something that they are not, and the only way to weed them out is by a diagnostic assessment, would lead to one being vehemently opposed to anything but an official diagnostic route – totally understandable! But surely, if this is the case (forgive me if I’ve got it wrong) then the fight should be against that small group of imposters, not against those who genuinely believe in their autistic identity. I guess then the problem is how to differentiate between the two groups?

I hope I haven’t upset anyone – and I hope all I have done is identify that a small number of people who go against decent principles should not have the influence to tear apart a wider community. There will always be people who want to manipulate and cheat – the fight should be against them.

Don’t Mess With Stress

As always, this is based on reports made to me by autistic individuals and/or parents/carers, and is simply my opinion only.
Autistic children and adults do not hold a monopoly on feeling anxious – of course not; however, it is well reported that levels of anxiety in terms of both duration and intensity are frequently much higher for autistic people than the predominant neurotype (PNT). In other words, something that sparks anxiety might result in that anxiety being felt more intensely and for a longer time that might be expected for the PNT. And, of course, the causation of anxiety will probably differ considerably for the autistic person compared to their PNT counterpart. This can work both ways – what can cause stress to a PNT may not be at all problematic for the autistic. For example, speaking at a conference is one that is often cited – while often highly stressful to the PNT it may pose no problem for an autistic speaker whatsoever (needless to say this can’t be generalised); conversely, the PNT may feel relief when the talk is done and it’s the coffee break – and yet this is when the anxiety shoots up for the autistic speaker. What is critical here is to recognise that across neurotypes it is likely that anxiety-inducing situations are very likely to differ. This makes it very difficult indeed for one population to understand the other in terms of what causes anxiety, why, or even how that state is experienced.
But – what is known, is that some autistic children and adults can become so overwhelmed with the intensity of their anxiety that it either becomes paralysing (sometimes literally) or a fight or flight kicks in, leading to either ‘meltdown’ type behaviour or fleeing. Needless to say, in educational parlance the latter two are subsequently renamed ‘challenging behaviour’ and ‘absconding’, neither of which are seen as a positive! But what else is a person supposed to do? A huge pressure exists on the autistic population to simply hide their anxiety and get on with it, put up with it, and just try a bit harder please to fit in with how everyone else does it. So, sometimes, people do. They mask their stress, they hide it – sometimes really well. They make a massive effort at not having the meltdown that could act as an anxiety release, they force themselves to overcome basic instinct to run away from the intense fearful situation. And some folk do this every single day. Imagine that. Having to hide your terror at going into an unpredictable classroom just because no one else has an issue with it. Or having to attend the team building day at work knowing that panic will be ever-present. Or having to go to a party with a partner and be expected to ‘chat’ without embarrassing self or others. Or having to put up with the real pain experienced in the changing room at school on PE day. Or suffering through lessons in intense anxiety knowing at any moment the teacher might ask you a question in front of the class. The list is endless.
And yet – what is done about this? How does the individual find any release from this horrible – and it is horrible – emotional state that can be perpetual? Sometimes, good practice prevails. Teachers, parents, staff – whoever – recognise that the individual is in emotional pain and take whatever steps are necessary – not to teach the individual ‘coping strategies’ to put up with it, but to remove whatever is causing the anxiety in the first place. [Please note – some strategies to enable individuals ways to manage their own emotional states can be brilliant. What I am suggesting here is that attempting to teach an individual that they simply have to accept and live with intense anxiety is not in the slightest bit acceptable]. However, in other situations, the individual’s emotional state is not accepted, recognised, understood, taken into account, or even identified. The person is then left, to face their fears, sometimes daily, with no support or understanding whatsoever. This is absolutely not even close to being ok. This is far from what should be the norm. This can be the equivalent of leaving an autistic person in a living hell with closed doors, no way out, and no way to see how to change anything. This leads, fairly obviously one would think, to a life of despair or worse.
And yet, is it that hard to accept it when a child tells us “that stresses me out”? Or when an adult states that they find certain activities anxiety-inducing to an unacceptable level? Or when we witness a meltdown to understand that everything happens for a reason? That the individual isn’t choosing to be so stressed that they lash out, or self harm, or scream (etc.). It may well be that it is difficult or even impossible to genuinely empathise with why something causes so much anxiety – but so what? It doesn’t make that anxiety any less real for the person. One doesn’t always have to fully understand why a person is so anxious; one just needs to accept that it is the case, and embrace the concept that something needs to be done about it.
So – a plea. If you know any autistic person who is stressed, anxious, fearful – and nothing is being done about it, intervene. Do what you can. Understand that life with anxiety is not ok. Stress can ruin lives, even end them. Please: don’t mess with stress.

Mustn’t Grumble

I’ve had some very similar communications with various autistic adults recently where the similarities are worthy of note. This Blog entry stems from these recent conversations as well as similar ones I have had over the last twenty or so years.

[NB – this is not a reflection of all autistic people, nor of all social events; not all is doom and gloom – many autistic people have fabulous social experiences to chat about!].

All the individuals noted above are intelligent autistic folk, all of whom have spoken to me about a social situation (referred to later simply as the ‘event’) and how they have found it stressful. It’s important to note at this point that when autistic people communicate that they are stressed – they really, REALLY are stressed – not in a ‘I’m a bit anxious’ kind of a way, but often in an all consuming manner and – very importantly – in a time frame that many of the predominant neurotype (PNT) simply do not comprehend. Many of the PNT can find themselves in an anxiety inducing situation – a job interview, a public engagement, an important exam – what strikes me as often qualitatively different between reports on this type of anxiety for the PNT and social anxiety reported by people with autism is the duration of the stress.

For many autistic individuals, the stress starts from the point that they are aware they have a social engagement looming; in other words, that wedding invite, or email message to meet up, or text to a party…whatever the format of the social invitation or social event…precipitates the anxiety. This can be the case even if the event itself is several weeks/months away. The stress can then last for several weeks after the event aswell – so one single event can cause – literally – months of increased anxiety.

I am of the understanding that the anxiety and stress that perpetuates from social contact can be divided into three fairly distinct components that I will call: pre-event nerves; event-itself stress; post-event comedown. Pre-event is the on-going knowledge that an event is looming – and, for some, looming is an apt verb, with its connotations of being physically overwhelmed by something that is imminent. The brain can become intensely focussed on going through scenario after scenario – i.e. what might happen, all the various possibilities, and all the subsequent ways in which a response could/should be proffered, what might be said, what questions should be asked, how questions should be answered, what topics of conversation are ok, what topics should be avoided, what is the appropriate thing to wear, is there an expectation to eat – if so, will it be a sit down formal affair – and, if so, who will I be sat next to? How long to I have to be there for before leaving, who will I know, will there be physical contact involved – hand shakes, hugging? Am I allowed to take my shoes off, will there be a baby crying in the venue, what toilet facilities will be available? Do I have to get ‘dressed up’, will I be the first to arrive, can I be the first to leave? The permutations – and therefore the rumination – are endless. The event might always be a conscious part of thought to the point of drowning out all other rational thinking, so that the individual can think of little else. Every waking minute holds its own level of stress. Every. Waking. Minute. Hour. After. Hour. Day. After. Day.

Then comes the actual event. The intensity of anxiety immediately before social contact is made cannot be underestimated, nor overstated. To many of the PNT this cannot be easily explained – if one has never suffered from social anxiety then it must be incredibly difficult to understand. Let’s just say that stress levels are such that there are often very clear physical and neurological reactions akin to panic attacks. Some people report shaking, sweating, heart palpitations, even mild hallucinations prior to social contact. Even for those who do not display such characteristics, anxiety is often (usually) reported as being extremely high.

The event itself is often hard to describe, as many people report to be so caught up in trying to work out what to say, how to understand the myriad of social cues, working out how, when, and why responses are to be made, concentrating on not interrupting, on not being too quiet, on not saying ‘the wrong thing’, trying not to stare in one spot all the time, trying to work out where one should be looking and for how long at a time, trying to understand the unwritten laws of physical proximity to others, trying to present as a human being totally in control of the situation when the opposite is actually the case…all while being bombarded by unwanted sensory stimuli that make it nigh on impossible to concentrate on anything at all anyway…that it’s all a bit of a blur – and an unpleasant (understatement) one at that!

Post-event comedown (aka the social hangover – thanks to Twitter #actuallyautistic posts for the phrase) can subsequently last days or weeks (and sometimes comes back to ‘bite the butt’ months or years later). First is the exhaustion; literally, the need to lie in a dark room for hours/days. The numb brain; the emotionally drained state; the feelings of emptiness and confusion. Secondly, the retrospection – the ongoing rumination over what happened, why it happened, what went wrong, and what could have been done differently – not only is this mentally shattering, it can also be a never ending process with no clear answers, unfortunately. Thirdly – the unwanted flashbacks, bringing back the negative emotional state of the event. These can occur years down the line.

So – one seemingly ‘innocent’ social event can cause months of pain to an autistic person.

The title of this entry stems from a long conversation I had with a young woman with autism who had been reprimanded by someone for grumbling about a forthcoming social event. She had made one ‘grumbly’ remark (something along the lines of “do I really have to go, you know it stresses me out”); what the young lady confided in me subsequent to the event was the number of hours her brain had been occupied in a negative way (she helpfully drew me a timeline with an associated graph of stress levels); what gave me an epiphany moment was the fact that taking into consideration the duration and intensity of her stress, against one relatively innocuous remark, it became clear that she is one of the least ‘grumbly’ people I have ever known. And yet she has a (negative) reputation for complaining about being stressed! The reality is that she is so stressed almost all of the time that she very rarely (in relative terms) ever remarks on it.

Ever since, I have been very wary of using the phrase ‘mustn’t grumble’.

I Dream of an Autism Friendly Restaurant

I love eating; even more, I love cooking. And I love the fact that I get to work in the autism field. And I love miniature things. I am also a serial fantasiser – you know, for ever thinking up ‘what if…’ scenarios; the other day I was fantasising about how I could combine some of my special interests – i.e. cooking, autism, and miniatures, and came up with the idea of a new Blog post…

I know that there are plenty of individuals and families for whom eating out is either not an option, or is such an industrial sized planning operation that it hardly seems worth it in the end; plus all the variables that can’t be controlled, such as:

  • the sudden appearance of a baby crying;
  • a plate breaking in the kitchen;
  • bread being offered all piled up in a basket and not set out separately without touching;
  • food being served on a texturally inappropriate surface (were humans ever meant to eat off slate?);
  • the waitress wearing the ‘wrong’ perfume;
  • the two clocks on display showing different times;
  • the electric socket switch being turned on despite there being nothing plugged in;
  • the noise of the air-con being painful;
  • background ‘chatter’ becoming overwhelming;
  • people scraping their chairs on the floor when they get up or sit down;
  • being greeted by an unanswerable question such as ‘so how does tonight find you?’
  • not being able to sit tucked away in the corner;
  • grammatical errors on the ‘specials’ board (what makes the meals on the board so special anyway?);
  • the ketchup in the Heinz bottle clearly not the correct colour for genuine Heinz ketchup;
  • hearing other diners eat their food – and/or seeing other diners eat their food!;
  • …or any number of the plethora of very real issues that lead to having to pay the bill and get out before the meal comes to an end – or even before it has begun.

Rachel Khoo, the fabulous chef, used to run what she describes as the smallest restaurant in Paris – with just two tables it certainly seems justified in that description. So what about going one better? What about a really miniature restaurant of just the one table? All of a sudden, my mind started going wild with excitement. Imagine just how autism friendly this mini restaurant could become? The dining out experience could be adapted in so many ways to suit the customer; all of a sudden maybe, just maybe, many of those families, individuals, or couples who have had restaurant dining denied to them, could be eating out in a safe, secure, friendly, adapted-to-suit environment.

Some of the ways in which the experience might be made autism friendly in my fantasy included:

  • Advance ordering. Having a website with full pictures, descriptions, ingredients, methods of preparation could mean that the diner could order exactly what they want plenty of time in advance.
  • Bespoke meals. Of course it is not possible to have infinite variations, but it should be possible for a half decent chef to have a discussion (online, I would imagine) over the requirements of the individual. Food must be served with each component in a separate dish? No problem. Nothing green on the plate? Of course. Chips all the same length? Certainly. Mayonnaise made with lemon, not vinegar? With pleasure.
  • Timings. If need be, all timings can be set in advance. Arrival time, and time of service are the obvious ones, but there may be other timing issues that can also be worked out – such as traditionally ‘unusual’ times to dine out, for example for folk who may be nocturnal.
  • Ambience. As above, this can all be worked out well in advance. Most people have access to mobile music devices that can be docked – so, bring your own playlist if you like. Set your own volume, eat in silence – it’s all up to you. The lights are all on dimmer switches so have then as bright or as dim as suits you. Candles available for those who are artificial light averse, naturally.
  • Contact with people. Some individuals find that the social component of eating out is enough to put them off. With a single service restaurant all social contact could be avoided if this is the wish of the customer! At the agreed time, simply open the hatch and the food you ordered will be waiting for you. When you’re ready, put your empties back in the hatch which signals to chef that it’s time for the next course – simple! Payment arrangements could even be sorted out so you can leave whenever you want without having to ask someone for the bill.

I have no idea whether this would be financially viable – though I don’t see why it couldn’t be. Of course the aim would be to open up the dining experience to those for whom it is problematic – so goes way beyond the autism community, and may be beneficial to a whole range of people. Just imagine (I did – it was wonderful) a whole chain of such mini eateries, across the country (world, even) – which may help the financial viability. The glorious connotations and wide reaching implications…

In my fantasy it was me running this restaurant – in my outbuilding as it happens…until I remembered that while I do love cooking, I rather love my job too, and it’s full time. So, I thought I would Blog instead – and encourage any entrepreneurs who think this may have viability, to genuinely think about it and perhaps give it a go? Someone, somewhere, might make it a success; how amazing would it then be for everyone who wants to eat out without anxiety, could do so.

What You see Is Not (Always) What You Get

I spent some delightful time recently with a family I have known for years – not in a professional capacity, just chilling out and enjoying coffee and autism chat – my usual pastime. One member of the family has provided plenty of challenges to ‘service providers’ over the years, having been excluded from an autism specialist school who couldn’t cope and subsequently living at home ever since under the excellent watch of his parents. Multiple agencies have tried to work with him without success. Watching his interactions with Mum and Dad really made me think about how easy it would be for an ‘outsider’ – or someone ‘not in the know’ – to completely misinterpret his facial expressions, body language, and voice prosody. This, in turn, made me reflect on the Don Tillman character in the second ‘Rosie’ book series, The Rosie Effect (Simsion, 2015) when he alludes to how ridiculous he finds it that most people presume that not demonstrating emotion equates to lacking in emotional function. This, in conjunction with reading the utterly superb Blog The Highs and Lows of Functionality made me want to write about, and clarify, a few aspects of autism that are sometimes (or often) misunderstood.

What you see is not (always) what you get – in other words, those facial expressions (or lack of) are not necessarily an indication of what an autistic person is (or isn’t) feeling. It’s quite extraordinary how subtle the PNT (predominant neurotype) can be when translating (PNT) facial expression, perhaps because of the PNT skill of contextualising very quickly – perhaps this is where the expression ‘nervous laughter’ comes from; individuals are allowed to laugh ‘nervously’, because those around them understand that the emotional expression is not one of mirth, but actually stems from anxiety. Hang on, then – why isn’t the same concept applied to people with autism? I know plenty of autistic people who laugh, smile, giggle, grin, gurn, or chuckle as expressions of (sometimes extreme) anxiety – but rather than recognising this, their teachers, peers, or professionals indicate that this is ‘inappropriate facial expression’ and promptly suggest some kind of social skills course. What is that all about?

Funnily enough, while at the family’s house, Mum told me of an interesting conversation with a social worker who had visited recently, along the lines of:

SW (on ‘observing’ for half an hour or so): “He’s got very good eye contact with me, hasn’t he!? I wasn’t expecting that…”

Mum: “Er, no, he hasn’t actually noticed you yet, he’s still processing the noise of the door bell, the one we asked you not to press when you got here…He isn’t looking at you, he’s looking straight through you”.

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In a similar vein to the above, a lack of emotional expression may have nothing whatsoever to do with emotional feeling – autistic people have feelings (I feel stupid writing that, but do know that to this day some people view autistic folk as ‘unfeeling’) but they may not express those feelings in a way that is easily understood by the PNT. But – that’s ok, surely? Well, it is – and it isn’t. It’s perfectly ok for autistic individuals to have a very different way of expressing emotions – of course it is – but what is not ok is for them to be judged incorrectly as a result. All those children and adults totally unfairly branded as lacking in emotion, being uncaring, unloving, cold…so many false assumptions made – and over a population for whom society has even decided are not brilliant with their facial expressions!

Most of the autistic people I know have incredible depth to their emotional repertoire – and yes, from an external PNT perspective lacking the necessary translating skills, that depth may go unnoticed; but just because it’s unnoticed, does not mean that it isn’t there. I believe that autistic individuals are best at expressing their emotions when they are relaxed – and yet, almost by definition, high levels of emotional feeling will mean the individual is not relaxed – sometimes, quite the opposite. So, is it so hard to understand that in the midst of what might even be emotional overload, with the myriad of internal cognitive functions trying to deal with the emotion, understand it, process it, identify it, name it, respond to it…that the face is the last thing that the brain is telling what to do? And even if the face is contorted into some resemblance of an ‘expression’ it’s likely not to be one that matches PNT expectations?

Of course – not all of this applies to all autistic individuals – or, even, to the same person (people will respond differently in different environments) – but I can bet that there are so many autistic individuals who have been mis-read and subsequently misunderstood, almost always with negative connotations, who would have benefitted from knowledge that their faces are not a conduit to their emotional expression.

What you see is not (always) what you get. It’s time society stopped applying the same rules of communication onto the autistic population for whom those rules don’t even apply. Perhaps, in time, the PNT will learn how to read (autistic) faces, and be less ‘face-blind’…and damaging, erroneous assumptions, will be reduced.

Transition Time

This came about when I was thinking about two very different triathlon experiences, and subsequently reflecting on pupils with autism at school. Anyone who has experienced an open water mass swim start to a race will know how scary it can be – lots of physical contact, arms and legs thrashing all over, goggles in danger of being knocked off, faster swimmers swimming over you – all in all, it can be pretty intimidating. However, I took part in an event recently where every single competitor had their own swim start, each 30 seconds apart. It was an incredible experience, so very different to a mass start – almost surreal, in fact, so different it was to what I was used to. I am not suggesting that one is better that the other (I quite like the adrenaline prompting mass start myself and found the individual start a bit lonely!) – just contextualising my thoughts, as it made me think of transition time in schools. Not only did the mass start prompt me to think of school, but the word ‘transition’ is very much associated with triathlons, so one thought led to the next…

Pretty much everyone associated with autism in whatever capacity will recognise that the word ‘transition’ is related to autism in a very negative way. Transition, it seems, is not an autism friendly concept. So – what is being done about it? There are all sorts of references to transition in various policies and guidance – but in this brief Blog I want to highlight a very specific area of transition with three suggestions that just might benefit pupils in school. They are suggestions only, not evidence based research – so, you make up your own minds as to their potential worth.

The transition I am referring to is that between lessons. Very often, the scenario is one of apparent chaos to an outsider – but for the pupil with autism it is potentially an horrendous experience, which must be lived through several times every school day. The sensory overload alone might be enough for the autistic student to feel terrified of these transitionary times, let alone the myriad of occurrences that may or may not happen that simply cannot be prepared for. Now, schools simply don’t have the time to follow triathlon scenario two from the first paragraph – but I wonder if simply dividing each class into three groups (or, in triathlon terms, waves) and asking each one to leave with a minute gap between might go a huge way to alleviate some of the problems autistic students face during busy corridor times? It would be possible to ensure that the students who most benefit from quieter transitions to go in the first group, which again could be of huge beneficial impact to some students. And, really, would it waste much time? I suspect in the end it would either make no difference or – if disruption between lessons reduces, it may even save time. So, that is suggestion number one.

Suggestion number two – think about the school bell signifying the end of a lesson. Some schools I know of have abolished the school bell entirely, such was the negative impact it was having on their students on the spectrum. I have heard of some schools who have special lights that are used to indicate imminent transition times and how students report positively of the system, and others where classroom lights are dimmed briefly to show that the end of a lesson is due. Of course these suggestions may not be possible, particularly if there are students with visual issues who require auditory signals – but there are alternatives to school bells which are autism friendly, and can make a very significant impact on those students with auditory hypersensitivity. One of my favourites that I have come across is a visual ‘countdown’ traffic light system, where the green light (lesson in progress) changes to amber to signify five minutes to go, then red for the end of lesson. Very autism friendly indeed!

My third suggestion relates to seating. Some students love routine and consistency, and having the same seat in each classroom may be hugely anxiety-alleviating for them. Knowing who is sat next to them, knowing what to expect, and what the view will be are all aspects that may be useful to the student on the spectrum. Some students may also prefer a seat in a specific area of the classroom – next to the window for natural light for example, or right at the front so they can concentrate on the teacher and have a less ‘busy’ view of the classroom, or right at the back so they don’t feel as though everyone else is looking at them.Each student will have his or her own preference, and if this stems from a specific autism-related need which is subsequently me it may again go some way towards reducing stress.

So, three suggestions to reduce anxiety for autistic pupils, all relating to transition from one class to the next. While they may seem minor or trivial – to some students they may be hugely impactful.

Please add comments to share your success stories with others; until next time, thank you as always for reading, and feel free to share with anyone who you feel might benefit!