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”.

————————————————————————————-

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!

Just Doesn’t Fit In?

Over many years of working with families and school I have come across such an abundance of children with autism who appear to be highly vulnerable – ironically, as a direct result of being intellectually able enough to do a sufficient job of seemingly ‘fitting in’ at school while the reality is very different.
The profile of these children is that they may be academically able, and have the skills necessary to hide their autism ‘characteristics’ (often this is in the form of keeping a lid on behaviours that they might display in other situations, e.g. at home) and are able to use considerable intellectual effort to ‘conform’ to a degree that their actual needs may be overlooked. Many of these children, it should be noted (though, of course, not all) are female – and many may not have a diagnosis (again ironically, for similar reasons as outlined). Very often, these are children who would not appear to qualify for an Educational Health Care Plan (EHCP – what used to be a statement) and would not usually be considered for an educational placement outside of mainstream school.
From an educational perspective this is absolutely understandable; why would schools seek to create a problem that does not seem to exist? However, in my view these are some of the most vulnerable children on the autism spectrum. Talking to parents as well as autistic adults (very often who have been diagnosed in adulthood) it becomes apparent just how traumatic school life can be for these children. Individuals report that they spend a huge amount of both intellectual and emotional effort simply to be as inconspicuous as possible; being ‘in the spotlight’ or drawing attention to self is reported as hugely stressful and anxiety provoking – hence the very reasonable rationale of wanting to avoid any kind of unwanted attention. This, though, leads to two key issues:
1. With such a degree of conscious work going into reducing anxiety by trying to ‘fit in’ the pupil may be at a considerable disadvantage in relation to their academic studies;
2. With any kind of success at ‘fitting in’ the pupil may be masking very real problems that teaching staff might otherwise be aware of.
The result of the above could be that a student ends up being intellectually drained without reaching their academic potential while at the same time leading educational staff to believe that there are no underlying problems – a double whammy that can last throughout a whole education (including Further and Higher educational experiences). I have met so very many adults who suggest that they would have been able to get far better grades had they not felt the need to make such an effort at pretending to be someone else at school.
One of the major problems with this situation is that very often high levels of anxiety remain with the pupil/student. While ‘copying behaviour’ (echopraxia – in this case, conscious) may alleviate the day to day confrontations that the pupil seeks to avoid, it does not necessarily reduce overall anxiety. The pupil still has to work up the courage on a daily basis to enter into an environment that they find confusing and chaotic, while at the same time working up the energy to put on a façade to reduce any unwelcome attention. Imagine you know that you have to do something that causes you stress – perhaps a job interview, or an exam. When you wake up in the morning, how do you feel? Would you prefer not to have to do it? Are you dreading it? Are you wishing it was already over? Having spoken to many children and adults with autism I believe that similar feelings of dread are felt by pupils accessing mainstream schools – but they have to put themselves through this every single school day. Some days are even worse than others – having a lesson (e.g. PE) that is less structured than others, or having a day that it outside of the ‘norm’ (e.g. non-school uniform day) can add to overall anxiety, sometimes to an extreme degree. There is little research into lived experiences of ongoing, long term, consistent levels of anxiety for school children with autism, nor the subsequent impact; research does suggest, though, that levels of anxiety for school-aged children are higher than their peers.
Autism has been referred to as ‘invisible’ – I suggest that even within the ‘invisible’ autism population there is an even more hard to reach group; children who are in desperate need for understanding and support, but whose at-school presentation does not indicate any particular issue with attending school. Sometimes, it’s the hardest to reach group that are in the greatest need.

How Does Society Judge People With Autism?

There seems to be an awful lot of testing in the current day and age. From early childhood all the way through to job interviews and ‘fitness to work’ and all that goes on in between; one can be ‘tested’, for example, in any of the following areas: educational evaluations, various developmental milestones, diagnostic assessments, psychometric testing, interviews, Doctoral viva, personality – the list could go on.
So? What’s the problem? What’s the point of this in relation to autism (NB this includes Asperger Syndrome).
The issue is fairness and equality, as well as accuracy of ‘results’. My critical premise is that a test for one person that provides accurate results may not give as accurate results for someone else who may process that test in a different way. If ‘testing’ is developed with the majority of the population in mind, then surely there is a reasonably robust argument to suggest that if one falls outside of the demographic majority then the test may not be as applicable in terms of efficacy and/or accuracy of results. Take the following example:

It is GCSE maths and the exam is imminent. An autistic pupil takes the test, but rather than following protocol, he simply answers the questions without showing how he has worked them out. His argument – which makes perfect sense to him – is that he doesn’t need to show how he has worked his answers out, as by getting them right it should be self-evident that he knows how to work them out. Conversely, he feels very strongly that should he get the answers wrong then he does not deserve any marks at all. He is, in fact, a very gifted mathematician.

In this example, the student may score fewer marks than someone who dutifully shows their workings out, and yet he may have answered all questions correctly. Is the test, then, an accurate reflection of mathematical ability, or a reflection on how well one engages with the test itself? In the case of the autistic student it would seem that it is the latter, and not the former. Subsequently, despite being excellent at maths, the student may not have the opportunity to have this reflected in his grade.
Another aspect of ‘testing’ that stands out for me is the job interview. I find it incomprehensible that most employers still use this form of assessment when trying to identify potential candidates for employment. Quite aside from the plethora of issues that face an autistic individual and the potential disadvantage they might face in an interview situation, logic alone dictates that demonstrating expertise within an interview is exactly that – being good at an interview. This does not necessarily correlate with being any good whatsoever at the job one is being interviewed for. The converse is perhaps far more important – representing poorly at interview does not necessarily mean that one is going to be an inadequate employee. So many people with autism bemoan the fact that interviews are the barrier that preclude them from gaining employment, despite feeling that they are well able to do the job. As someone mentioned to me, “instead of interviewing me, please just observe me doing the job for an hour instead – and judge me on that” – which I think in many cases is eminently sensible advice. Of course, it is not always practical, possible, pragmatic, or even appropriate to observe a potential employee at work – but it’s certainly an idea worth exploring to go some way towards making employment opportunities more available and, perhaps, fairer.
Taking the argument to a conceptual level, if any test is attempting to reflect the neurology of an individual in any way – then unless the test is adapted to suit the cognitive style of the ‘testee’ then how can results be said to be valid? Many (if not all) individuals with autism will have ‘spiky profiles’ – i.e. neurological strengths and weaknesses. This may result in an inaccurate reflection of both ability and difficulty. For example, an individual with autism may take a psychometric test to ascertain her intellectual quotient (IQ). The British Psychological Society (BPS) (BPS.org.uk, last accessed 12.11.15) note that tests are devised very carefully and that large numbers of people are used in a pilot. The BPS also acknowledge that tests will determine how ‘typical applicants’ score on the test. However, large numbers of people presumably don’t take autism in to account, and would an autistic person be considered a ‘typical applicant’? If results are taken at ‘face value’ without the individual’s neurological profile being taken into consideration, does this mean that the outcome is questionable? Quite possibly, yes.
As already noted in relation to job interviews, individuals may have good skill sets relating to employment but without the requisite skills at interview. There will also be situations – which can cause just as much distress – where judgements are made and assumptions formed about an individual’s level of skill in one area based on another. In other words, an assumption may be made along the lines of ‘well, he’s academically brilliant, so he simply must know that telling the truth about his neighbour’s weight problem to her face was a daft thing to do’. Well, for a person with autism his academic intellect may have nothing whatsoever to do with skills around what (and what not) to say to a neighbour. Such assumptions may be very dangerous indeed.
So, as (almost) always, the answer lies in treating the autistic person on an individual level, not using generic assessments but tailoring them to take the person’s way of communicating, interacting, and processing into account. Unless we make adjustments in how skills are determined, we run the risk of making erroneous assumptions around what a person can and can’t do – which, simply, seems unfair.

Sensory Framework

Hi – while I am not a clinician in any way, shape, or form, I do recognise that sensory issues are a huge part of life for most autistic people, and over the years have spoken to hundreds of individuals and families about sensory experiences. From this, and with a huge nod to the work of Olga Bogdashina, I have set out some questions around sensory experiences that some may find useful. Getting a good sensory profile to take needs into account at school, home, in the workplace – wherever – can have the potential to be of massive benefit. The questions are not exhaustive, of course, and some may be inapplicable – but, it’s a start, at the very least. If you wanted me to add to the questions with your own suggestions please free to comment, or email me – l.beardon@shu.ac.uk

Sensory Questionnaire

Please fill in comments on how you are affected in the following sensory areas. If you do not see any sensory issues under a particular heading simply leave blank. Please give as many examples as you can possibly think of. This can be filled in by an individual with autism, a parent, or both!

Touch

Do you show sensory sensitivity with touch? For example how do you react to the following?:

  • Material – do you show a preference/dislike to specific types?
  • Sleeves – do you need to have either short sleeves or long sleeves?
  • Do you find labels in clothes uncomfortable?
  • Do you mind seams in socks?
  • Tight / loose clothing -is there a preference?
  • Belts – do you feel a strong need to wear one?
  • Buttons – like/dislike?
  • Shoes – easy or not to buy new shoes? Do you like to take shoes off whenever possible? What about socks – are there similar issues?
  • Colour – is there a reaction to different colour of clothes?
  • Hats do you like to wear one? If so, why?
  • Trousers / shorts – is there a preference?

Is there an apparent lack of ability to dress appropriate to the weather?

Hugs – do you like them or not? Do they need to be a certain way?

Soft touches vs firm – is there a preference?

Are there any issues with the following?:

  • Skin on skin contact
  • Brushing past people
  • Proximity to people
  • Texture of food
  • Shape of food

Do you show extreme hypersensitivity, for example with touching of:

  • Hair
  • Nails
  • Teeth

Do you resist:

  • Getting hair wet
  • Having hair brushed
  • Having hair cut
  • Having nails cut

Auditory

Do you show intense hypersensitivity to a specific noise, e.g.:

  • Dogs barking
  • Paper tearing
  • Vacuum cleaners

Do you have an inability to separate sounds, e.g.:

  • Background noise
  • Extraneous auditory information
  • Voices

Do you hear noises that others cannot?

Do you love certain noises and seek them out?

Do you tune into certain noises and then appear not to hear anything else?

Will you listen to the same noise over and over again?

Do you ever cover ears in response to a noise – and, if so, what was the noise?

Olfactory

Do you use smell to recognise objects/people?

Is there extreme hypersensitivity – e.g. the ability to pick up smells that others cannot?

Are some smells overpowering?

Are certain smells greatly offensive?

Are certain smells sought out?

Taste

Do you use taste to recognise objects/people?

Does the texture of food matter?

Does the colour of food matter?

Are you a ‘fussy’ eater?

Does food need to be prepared in a certain way?

Do you insist on eating certain brands?

Can you differentiate between brands by taste (i.e. without seeing the packaging)?

Visual

Do you notice patterns in the surroundings?

Do you notice detail that others do not?

Do you like order – e.g. straight edges.

Will you rearrange the environment to suit his/her needs?

Do you get absorbed in looking at certain things?

Do flickering lights or screens bother you?

Vestibular

Do you rock/engage in rhythmical movements?

Do you flap? If so, when?

Do you love jumping up and down?

Do you ‘fear’ movements such as going down a slide?

Do you easily lose their balance?

Do you have difficulty in sitting still?

Proprioception

Will you misinterpret how much to flex or extend muscles when doing tasks?

Do you struggle with handwriting?

Do you frequently (accidentally) break things?

Do you miscalculate weight?

Do you use too much force, e.g. slamming doors or banging objects onto the table?

Do you tend to bump into people when walking, or veer off from a straight line?

Do you love deep pressure, e.g. strong hugs?

Do you seek small, enclosed spaces?

Do you walk on tip toes?

Telling a child about being autistic

The following question was posed to me in the ‘Ask the Experts’ section of AuKids magazine (http://www.aukids.co.uk/) in their Spring edition, 2014:

‘How and when would you recommend I tell my child about their diagnosis? I am nervous about discussing it.’

This was my response (with some additions):

As is so often the case in the autism world there is no simple ‘one size fits all’ answer to this issue – and yet it is such an important one! I tend to suggest that there are three aspects that need consideration which will help decide the ‘when’ of broaching the subject, and these are:

 

  1. intellectual ability
  2. cognitive and communicative ability
  3. motivation

 

Simply, unless the individual has sufficient skills in the first two and a certain level in the third, it is unlikely that any discussion will be beneficial. However, with the right mix of these three, I would think that you are good to go.

 

It is always a good idea to think long term – so, from the earliest possible age, start to identify concepts such as ‘difference’ – this can be a daily game and should always be based on the philosophy that a) yes, the world is full of difference, but b) being different is not a bad thing. One such game (and use your imaginations to create others) is what I like to call the bowl of fruit game. Have your pre-prepared bowl full of oranges, with the one solitary apple. Questions – are there loads more oranges than apples? [Yes]. Do you like apples? [Yes]. Are apples different to oranges? [Yes]. Does this make apples any less worthy? [No]. does the fact that apples fit different ‘criteria (colour, taste, etc.) make them somehow inferior? [No]. These sorts of questions/games can develop a child’s conceptual understanding of difference, and how difference does not mean anything negative.  In a similar vein, diversity and individuality can be notions that are developed in a simple, but positive manner. Then, when it is crunch time, the individual should have an array of ideas and terms than are actually applicable, as opposed to a confusing new set of communications that may muddy the waters.

 

The individual may also ‘tell’ you when s/he is ready. Questions such as ‘why can’t I do that as well as her?’, or any questions relating to difference are indicators that the individual may well benefit from having a better understanding of self.

 

I am beginning to reject the term ‘diagnosis’ – one gets diagnosed when there is something wrong with you in medical terms, and this should perhaps not be applied to autism. I far prefer the term ‘identification’ and the connotations with ‘identity’ – to discover that one has a new identity that explains so much can be a wonderful thing – as opposed to the doom and gloom so often associated with a diagnosis. So, please be careful how you choose the terms you use, as the longer term impact can be considerable. If it is feasible bring the individual’s interest into the equation – there are many famous real life and fictional autistic people that you can refer to if applicable. What is also crucial is to ensure the individual understands that just because they are autistic it does not mean s/he will be the same as others with the same identification – there may well be some similarities, but everyone’s strengths and weaknesses are their own. It’s important to make this clear to avoid potential issues with poor self esteem.

 

As much as possible make the news positive – this is an explanation of who a person is, not a dire foreboding of dreadful times to come! I like the Tony Attwood style of ‘congratulations’ when it comes to understanding one is autistic. However, do also be honest, as the individual is likely to store what has been said and revisit it often. Make the person feel exactly as they should – i.e. as a wonderful, interesting, different to the majority, unique person who has a fantastically interesting brain, and whose future could be anything they choose. Being autistic does not preclude anything at all, apart from not being autistic!

Article in Yorkshire Post

I have been asked by SHU to provide the article published in yesterday’s Yorkshire Post, so here it is (horrible feelings of hubris but I promise it’s only because I was told to):

Decades ago I found myself supporting a young woman with autism. I had done my reading of the autism texts of the time, and was singularly surprised when nothing I had read matched up to the person I was sat next to. There was no flapping, she had no interest in my earrings or buttons; she wasn’t even lining anything up!

For us at The Autism Centre one of the key messages we are trying to promote is that a medical (textbook) view of autism is often not an appropriate one.

The concept that all people with autism are disordered, impaired, or somehow ‘lesser’ is one that needs to be challenged. Having worked closely with people with autism for more than 20 years, I have had the pleasure of meeting many hugely intelligent, insightful, kind, caring, loyal, skilled autistic individuals, including two of my Doctoral students who both graduated successfully and are now prominent in their respective fields.

Some of the strongest marriages I have encountered are between people with autism, and I have also met multi-millionaire entrepreneurs who have been identified as autistic.

So, the question remains, why is it that autism continues to be seen as a disorder, with terms such as ‘impaired functioning’ still so rife within the literature and current diagnostic manuals? Why is it that one needs to present as a ‘problem’ before being in a position to be identified as autistic? Even the term ‘diagnosis’ brings along its own associations with ‘illness’ or ‘disease’. Surely, this gives out the wrong message to all involved – parents, individuals, and the public? For years I have been suggesting that the term ‘identification’ is a more appropriate one, decreasing the pejorative language so often heard in reference to autism.

Without doubt being autistic in a world populated in the main by people who are not can cause huge issues for the individual and their family. But this is not the same as suggesting that the problems are caused by being autistic. The very fact that there are plenty of autistic individuals who are hugely successful demonstrates that being autistic does not preclude anything at all.

The sad fact is that there are still pockets of thought that deny this; comments such as ‘she will never be able to have children’, ‘he will never go to University’ and the like are still way too prevalent. Parents of newly identified children are still sometimes told what the future will hold, despite the fact that no one has a crystal ball. Perhaps many of the problems stem from being in a poorly understood minority group, rather than directly from being autistic?

Nonetheless, things are certainly changing for the better – however slowly. The National Autistic Society (NAS), for example, actively promotes employment for people with autism – and, at last, Higher Education is beginning to recognise the value of having autistic students researching into areas relating to autism. The Equality and Human Rights Commission is working to ensure a level playing field in the workplace, although there is some way to go before this is fully realised.

 

The Autism Centre at Sheffield Hallam University is working to further these initial advances; to continue to promote a more accepting view of autism and to encourage society to recognise the potential of autistic individuals.

One of the courses we run in collaboration with the NAS has welcomed a plethora of autistic speakers, guest lecturers and autistic students each year since its launch. The insight and expertise from such individuals is invaluable, providing richness and value to the course. Indeed, it would be foolish not to acknowledge that without the input from autistic individuals on the course, students and lecturers alike, it would be highly unlikely that the qualification would be such a huge success.

So, have perceptions changed over the years? Well, for absolute certain I can say that mine have. I no longer assume that all publications are ‘correct’, and recognise that all autistic people are individuals. I have learnt to challenge the notion of impairment and disorder, while still recognising the huge challenges faced by individuals and families. I have begun to recognise the damage that can be done by ignorance and misinformation. I have learnt that changing perceptions through a better understanding of autism can significantly improve lives, and the best way to develop an understanding of autism is to listen to those who are autistic, their families and friends. In terms of general perception – well, certainly society is moving slowly in the right direction, with more and more autistic people self-advocating and promoting their strengths; however, I believe there is an awful long way to go.

 

Dr Luke Beardon is a member of staff in The Autism Centre at Sheffield Hallam University. He has been working as a practitioner providing support and consultancy in the field of autism and Asperger syndrome for around 20 years. Luke has been nominated for a National Autistic Society Lifetime Achievement Award at the Autism Professionals Awards, to be held in Harrogate on March 3.