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’.