A thousand souls – a poem about autism by Kathy Carter of spectra.blog
In a lifetime we’re privileged to meet eighty thousand souls.
Around a thousand have autism; still with dreams and goals.
On the autistic spectrum, processing is a chore.
Not necessarily ‘impaired’; nor diseased to their core.
Educators, practitioners, families and friends
Lacking understanding, yet on them the autist depends.
How many of this thousand that we’ll meet, have diagnosis?
Many are still unaware; yet we share symbiosis.
Without autism, computers, smart phones, tech are less enduring;
Pioneers forging ‘aspie’ paths: Tesler, Gates and Turing.
So, what’s the difference in these souls, the thousand that we’ll meet?
Maybe sensory challenges, to light and sound and heat.
A difficulty blending in; socialisation quirks.
Different communication styles; a trait that sometimes irks.
But at their core, a simple truth – differences in processing.
A brain speed sometimes fast or slow – constantly assessing.
These souls, often creative: scientists, artists, writers.
Musicians, sculptors, poets, whose creations still delight us.
Many leading figures; Michelangelo, Warhol, Mozart
Are thought to have been autistic – perhaps it drove their art.
Yet those with autism don’t want reverence; handling with kid glove.
Just inclusion, acceptance, and a healthy dose of love.
Much less ignorance: ‘Well. We’re all autistic aren’t we?’
No. And while we’re at it, that young autist isn’t naughty.
Another irk. ‘You must be high functioning’, peers say.
It’s called ‘autistic masking’, to get one through the day.
So, these one thousand souls, that we’ll meet throughout our life.
They’re our bosses, neighbours, workmates; a husband and a wife.
The literal thinkers, loyal peers, problem solvers great.
The listeners, grounded cynics, the friends we truly rate.
Their daily struggles are unseen. Until the curtains close.
Their difference in processing results in crashing lows.
So education, acceptance and awareness are our goals
To understand autism, and embrace these thousand souls.
Our book ‘Autism from A to Z’ is now widely available – purchase here.
Anxiety and other similar problems are rife in the 21st-century, but for many people the issues are episodic or caused by an obvious external factor.
(Anxiety UK reports that anxiety disorders are very common, with 1 in 6 adults regularly experiencing some form of ‘neurotic health problem’, and the most common neurotic disorders being anxiety and depressive disorders. More than 1 in 10 people are likely to have a ‘disabling anxiety disorder’ at some stage in their life, reports the organisation. Source – www.anxietyuk.org.uk)
Anxiety can really be considered to be part of your autistic DNA…
However if you are on the autistic spectrum, for many individuals, anxiety can really be considered to be part of your autistic DNA. There is very little in the way of hard and fast stats and figures to indicate anxiety levels among autists. (The National Autistic Society states that autistic children and young people can experience a high ‘base level’ of anxiety every day. ‘Autistica’ advises that anxiety is ‘common’ in autists.)
Spectrum News reported that the reason we see ‘classic things’ like social phobia and generalised anxiety [in autists] is because people on the autistic spectrum have unique, distinct ways of perceiving the world. They reported in 2017 that Psychologist Connor Kerns, assistant professor at the A.J. Drexel Autism Institute in Philadelphia, USA, is working with others on new ways to measure both ordinary and unusual forms of anxiety in autistic people. There are links to hers and others’ studies on anxiety and autism HERE.
Is a degree of anxiety an inbuilt factor for someone who is autistic?
But through this author‘s communication with other autistic individuals, and from collating information, it seems that a substantial degree of anxiety is an inbuilt factor with autism.
Many autists would for example describe their anxiety (on a scale of 1-10) at being at five, just as a baseline. Just getting through the day with all of the run-of-the-mill, usual challenges can be very stressful for autists; it is as if our neutral state is to have a certain level of anxiety.
If you know about autism, then the reasons for anxiety are obvious
If you know about autism then the reasons for this anxiety are obvious. Probably a major factor is social masking – trying to fit in with the world, and say and do things that others consider appropriate – which can be exhausting and stressful.
If you are an undiagnosed autist, there is the constant feeling of being different and not fitting in, or failing at being your best self. Very stressful! If you are a child, this is compounded by all of the developmental issues, and social and educational expectations.
Just the neurological differences for autists, in terms of elements like executive function, memory, sensory issues, emotional calibration and communication, can bring about a sense of anxiety. And this is without all of the usual stresses concerning finances, places of education, workplaces, relationships and so on.
The pressures are anxiety-inducing to an autistic child
For a school-aged child, or more specifically a child who is educated at school, the pressures of fitting in and completing school work when you have issues like executive function difficulties and possibly other comorbid autistic conditions can be immensely stressful and anxiety-inducing.
It is no wonder that unexplained anxiety is often one of the first things that parents of undiagnosed autistic children notice. And it is no surprise that so many children hold it together emotionally at school, and let out their emotions at home, leading to unhelpful third party comments like: ‘Well, he / she doesn’t seem to be very anxious at school.’
Personally speaking, e.g. from the author’s own autistic experience, I can say that my anxiety never goes away, but it is manageable. However, this has only really come about with an autism diagnosis.
Talking therapies, mindfulness etc can help, but really the key is perhaps to know your own autistic spectrum. (See our blog on this subject below).
Aspie-superpower days – why autists may be on an ‘autistic spectrum within a spectrum’? We look at the different ‘autistic’ days…
Know your own autistic spectrum
So what do we mean by this? We mean, what triggers you; what overloads you in a sensory or social capacity; what external factors cause frustration; anger or upset; what sensory challenges affect your mood? What activities that you are engaged in (whether this is social activities, or within the educational action setting, workplace etc) make you stressed? Which family members, friends, associates or workplace colleagues are drains or fountains? (Drains being the people who drain you of your emotional energy, and fountains being the people who replenish it).
Would it be feasible to stay away from the drains to a degree, no matter who they are?
Or is there a way to educate the people around you further about what you need to do to reduce your anxiety day-to-day, in a self-care capacity?
Targeting anxiety as an autist
There are of course age-appropriate medications available for anxiety, in addition to therapies, dietary and exercise interventions and natural remedies as well, which individuals or their parents can discuss with the relevant healthcare provider.
But let’s look at it simply – if you had a severe allergic reaction to a type of animal or a plant, would you constantly be in close proximity to the animal or plant? Would you take a job in that field? it would be inadvisable, for your health. Yet many of us on the autistic spectrum continue to do things that cause an unpleasant reaction to our bodies.
Anxiety is a psychological response which can have physiological consequences. Noticing one’s triggers, or the triggers for a child, is a massive step on the road to managing anxiety.
Autistic burnout – Burnout is a physiological symptom of system overload.
Anxiety that builds up is a factor for an autist heading to autistic shutdown, autistic meltdown or even autistic breakdown or burnout. Stories abound of young autistic adults reaching key developmental stages in their life, for example the start of high school or the start of university, and then having a complete emotional breakdown.
Noticing one’s own anxiety levels can be immensely helpful
Noticing one’s own anxiety levels can be immensely helpful in preventing these incredibly detrimental occurrences. For example, noticing: changes in appetite or interest in food; an increase in harmful repetitive processes (including thoughts), and self stimulating behaviours that are detrimental; general apathy and lethargy; a lack of patience with people and reduced capacity to socialise to one’s usual capacity; and even a change in one’s heartbeat, if you use a health / activity tracker.
In children, are they ‘acting out’ a little more (behaviour that challenges is often a big ‘red flag’ sign); or having more meltdowns or episodes of sadness?
Are they finding it harder to regulate their emotions; withdrawing into themselves; exhibiting more self soothing stims; having difficulties in their place of education; becoming more controlling of their environment, or experiencing increased levels of perfectionism?
Helping autistic children to identify their own responses could be very useful.
If a child is experiencing any significant number of the above signs, it could be time to reduce their sensory challenges and level of socialisation, reduce the demands put upon them, and do whatever is needed to help them recalibrate in a safe place, with plenty of downtime that meets their needs.
A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism.
The information we post here is based purely on our own exposure and experiences.
We’d also love your feedback on our posts!
Our book ‘Autism from A to Z’ is now widely available – purchase here.
We wanted to write an article about not only interactions between autistic individuals and the people around them (of any neurology); but more importantly, how we as autistics deal with these interactions.
Specifically, this article looks at some of the negative aspects of communication, when you are autistic. Sorry to focus on the negative, for a moment – but it warrants confrontation and consideration!
“Other people of all neurologies may find you as an autistic individual irritating; it’s a bitter pill to swallow, when you’re just being yourself…”
A difference in processing mechanisms (and therefore communication styles) is one of the key facets of being autistic, and it goes hand-in-hand with challenges in the field of socialisation.
Let’s be blunt here – if you are autistic, other people of all neurologies, not just neurotypical (NT), may find you odd / quirky / annoying / irritating. It’s a bitter pill to swallow when you’re just being yourself.
Here’s why I think autists can seem irritating to other individuals: (Read about the author of this blog HERE).
First impressions. As detailed further below, autistics can be fairly expressionless, or produce looks that are difficult to interpret by neurotypical individuals (NTs). This means others’ first impressions of us can be confused, and we may appear rude, or not interested in making a connection.
NTs’ ‘programming’ – described by disability rights advocate Aiyana Bailin as follows: “One of the biggest social difficulties faced by autistic people is neurotypical people’s reluctance to interact with those they perceive as ‘different’.”
Our quirks – for example, an autist’s hyper-focussed attention to detail, their focus on justice and punctuality, or a special interest that they seem over-interested in, to others.
Our behaviours – eg.: an autist who stims when others see it as being inappropriate set them out as being different or odd. A dis-interest in social chit-chat and conventions seems distant. Our differences in processing mean we may ‘lose’ key words en-route from brain to mouth, or miss a conversation’s meaning.
It’s Not OK of course. It’s not OK for autists to constantly feel belittled, or that as they can’t get their interactions ‘right’ with people, what’s the point of trying? It is not OK for NTs to roll their eyes at their autistic colleagues if they’re pedantic about a certain issue, and it’s not OK to leave the autist out of a workplace lunchtime drinks session, because the autist ‘goes on about’ a special interest longer than their peers may do. But it happens. And it is foolhardy not to acknowledge that these interactions and challenges happen. More than that, as an autist, knowing WHY people are irritated by us helps us understand the process, and feel less of a failure. Communication is a two way street, and there are simply many mixed messages and social communication differences going on at any given time.
(And, it isn’t just peers who make such observations – a TEACHER in the USA recently awarded an 11-year-old autistic boy the ‘most annoying male’ award, at an Indiana school.
Akalis Castejon is non-verbal, and reportedly, it was a special education teacher at Bailly Preparatory Academy who gave the tongue in cheek award.)
It has been proposed that a lot of the beliefs we hold about people, and the feelings we have about them, may be made within just a tenth of a second of meeting them; the way we approach conversing with people is almost subconscious.
One study by Princeton psychologists in America studied judgments from facial appearance, focusing on attractiveness, likeability, competence, trustworthiness, and aggressiveness. It concluded that there’s a fraction of a second’s time to make such judgements. BUT, autists have difficulty making appropriate facial expressions at the right times, according to a 2018 study on autistic facial expression, which used analysis of 39 studies. ‘[Autistics] may remain expressionless, or produce looks that are difficult to interpret,’ reported Spectrum News.
Everyone essentially gets a ‘feeling’ about somebody upon meeting (or just observing them), and we choose to converse with them, or we choose to avoid them – this is happening in a split-second. Let’s re-visit the American study on attractiveness, likeability, competence, trustworthiness, and aggressiveness. The autistic individual’s lack of expression is likely to be one reason why, based on first impressions, other individuals may not get a clear impression of whether the autist is likeable.
After the first impression – more reasons why neurotypicals may be irritated by autists
Autistics are almost universally used to being treated without respect by many people around them (again, this is NOT OK, but it happens); and to be blunt, we autists CAN annoy people.
If for example, as an autistic, you are the organised, scheduling-obsessed Aspie (Asperger Syndrome) type, other people, especially neurotypicals, may sometimes find your hyperfocussed attention to detail and focus on justice and punctuality overwhelming. Their priorities are just different At That Moment In Time.
Conversely, if you’re an autistic who lacks some executive functioning skills, and for example struggles to keep your house as tidy as you would like, or is challenged by punctuality, other people may feel that you lack personal pride, or are too selfish to even get to a venue on time. (They won’t potentially see or understand the challenges you faced getting to the venue at all, or maybe even getting dressed, getting up that morning and stringing a coherent sentence together. They’re also unlikely to consider the downsides of the interaction, and the autistic social hangover you may experience thereafter).
It works both ways – NTs can be annoying too
It works both ways of course – if you are an autistic individual on a fast processing day, planning, scheduling, imagining and ruminating to a fast-paced musical soundtrack in your head, you will probably find the typical (but relatively low, when compared to yourself) processing speed of the neurotypical people around you infuriatingly slow.
(Read our blog on Fast Brain Days directly below..)
Aspie-superpower days – why autists may be on an ‘autistic spectrum within a spectrum’? We look at the different ‘autistic’ days…
And as a general rule, on this Fast Brain day, you may find the incessant need of others to chitchat and pass the time of day over trivial matters an annoying form of Time Stealing; especially if you are feeling sensitive and overwhelmed. It is as if one person’s on slow-motion, and one’s going super-fast – and the ‘slow-mo’ person can seem infuriating, and their reactions and mental connections infuriating. (If the autist is the one on ‘slow-mo’, this can probably seem frustrating too, from others’ points of view.)
Belittled and bullied
Autistic people, like many underrepresented groups, are often marginalised, belittled, ignored and even bullied. And our combined penchant for repetitive processes and our hyperfocus on certain things, which could be described by other people as ‘going on about something’ or obsessing about something, means another form of bullying can take place, if our actions seem annoying or irritating.
This bulling is the belittling or disparagement of our feelings and needs. Examples include: ‘Come on, it’s not that important, pull yourself together.’ ‘Stop going on about it, there’s other people in the world with bigger problems…’ etc etc. Belittling or squashing someone’s emotional responses regularly just because behaviourally they don’t fit into the ‘norm’, is an every day occurrence for autists. And it can become bullying, if it is repeated regularly.
Cloud cuckoo land
In an ideal world, and this is something many autism and advocates rightly press for, there would be widespread acceptance of people of all neurologies, as well as ethnicities, abilities and genders – we would all be accepting of each other and our quirks, we would make exceptions, we wouldn’t hold grudges, we wouldn’t make snap judgements, we would ‘let things go’, and the world would be a wonderful place whereby everyone was respectful. NTs wouldn’t be irritated by autists who are just being themselves, and little boys with different neurologies would not get presented with patronising ‘awards’ by the teachers who are there to educate and inspire them!
However, this is not currently the case, and seems unlikely to be the case, even as many individuals are being enlightened about what autism is, and how autistic individuals should be respectfully treated.
A double element of social and communicative difficulties
(A further complication that should be noted regarding communication is that autism runs in families, and autistic individuals are often naturally drawn to other neurodivergent individuals as friends and partners; so there is often a double element of social and communicative difficulties going on between the autist and the other individual, if they are autistic or neurodivergent too! Eg they may be battling their own communication challenges, and their own sense of justice, and being right!)
How can we improve this mis-communication?
Autistic individuals may develop a set of social skills or ‘mask’ that helps them fit in with others – READ MORE BELOW.
It seems like such a long journey to get (as a society) our forms of communication and our understanding of different neurologies right. For example, autists who are panicked, stressed or overwhelmed may show behaviours that are thought to be aggressive, leading to many instances of police involvement for simple matters that could have been prevented with some autism staff training.
So, what to do about this issue of communication, especially if you are an undiagnosed, or a late diagnosed autistic individual? You will almost certainly have spent your life feeling different – many describe it as being like an alien on the wrong planet – and perhaps you will have spent years constantly trying to fit in and appease people, wondering WHY you’re annoying others, and not really knowing why.
(Masking is of course a massive and concerning issue, leading to many mental health issues for autistics, or at the very least, health concerns, because in order to fit in, many autistics camouflage their difficulties, and essentially try to appear more neurotypical.)
Autistic masking – everything you wanted to know about ‘passing’ or ‘camouflaging’ as an autist
Many autistic individuals attest to feeling a widespread sense of failure
A sense of needing validation, or trying to appease people, is second nature to a lot of autistic people; the author of this blog has spent her whole life like this, with a sense of: ‘I don’t like confrontation, I want to please.’ Personally speaking, I generally try to show respect other people, hence I feel a great sense of injustice and hurt when other people don’t respect me back, or take into account my feelings. Often, I know from their response I have annoyed them, but I am not sure how. Literally by not saying a word, or by saying a word, but obviously the wrong one, I have irritated someone, when all I wanted to do was go about my day! This feeling is commonplace, and leads to a widespread sense of failure – many autistic individuals will attest to feeling like this.
A leaning to victimhood
I think what we are feeling in such instances is a failure to be neurotypical, which of course can never be achieved. One of the only ways to deal with this leaning to victimhood (‘Why am I always getting it wrong? Why do my friends and family not understand me? Poor me….’), eg. feeling that one’s feelings are being ignored, is to develop a Sod It attitude. (You can use a stronger word here, at least in your head. Sometimes, the strength of curse word can actually help with the personal strength that’s required!)
Yes (like all humans!), autistic people can be challenging, irritating and annoying, due to general miscommunication and preconceptions between multiple parties; and yes, other people often do not understand our intent; and yes, our quirks and our behaviours can lead to mistreatment. But if people are doing this on a regular basis, whether they be associates, colleagues, friends, family members, partners or whatever, maybe it would be beneficial to take ownership of one’s life and choices, and in the words of Keala Settle, say This Is Me. (‘I’m marching on to the beat I drum; I’m not scared to be seen, I make no apologies, this is me…’ ‘This Is Me’, by Justin Paul / Benj Pasek.)
This Is Me
It’s our nature as autistics to ruminate on things – our neurology needs repetition, and thrives on cycles; therefore, if people have treated us badly, it’s common to ruminate on the situation. This cyclical issue means we can end up constantly using a negative voice about ourselves, and almost substantiating or validating the treatment that we have been given. When in fact, what would really help is to put the matter to bed, move on, accept that people do not necessarily understand or support our autistic selves, and focus on being the best we can be. Being ourselves, with authority; and that Sod It attitude.
Most autistic individuals as they learn more about autism themselves, endeavour to educate those around them about autism. This is partly to make their own lives easier and enlighten their friend or family member, but in general, also to spread the word and educate the wider community about the differences between NTs and autists, simply to provide understanding.
Autistics do matter, we are valid, and we do deserve respect!
That is why so many blogs like this one exist, as autistic advocates strive to help develop further understanding, acceptance and awareness of autism. However, if after this stage of enlightenment, loved ones or friends are still treating you badly as an autist, citing you as being irritating and annoying, or not being supportive of what is important to you, or are being dismissive of your needs as an autist, is it time to break some ties? (Of course, where friends and family are concerned, this is easier said than done, and may require professional help; for example, talking therapies.)
But really, we do deserve better – it is time for autistics to take ownership of our needs and use this Sod It attitude. We do matter, we are valid, and we do deserve respect!
So to conclude, we started this article by proposing that autists can seem irritating to other individuals, due to confused first impressions, neurotypicals’ reluctance to interact with people they perceive as ‘different’, as well as autists’ quirks and behaviours that don’t seem typical, or to ‘fit in’ with the majority.
And we haven’t suggested any ‘tools or tips’ for appearing less annoying or irritating; rather proposed that accepting one’s differences and developing a Sod It attitude is sometimes key to moving forward, and being accepting of one’s autistic self.
A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism; the information we post here is based purely on our own exposure and experiences. We’d also love your feedback on our posts!
Meltdown describes the situation where the individual – autistic or otherwise, as it is not only a term used for neurodiversity – is no longer able to cope. Their skillsets aren’t sufficiently honed to deal with the situation at that time, and the individual lets off steam one way or another, in order to recalibrate. (Skillsets may include social and language skills, as well as executive functioning skills, as examples).
Autistic meltdowns differ from person to person, and some autistic individuals, especially adults, say that they rarely have meltdowns. (They will undoubtedly experience challenges and periods of ‘overwhelm’, but perhaps they head straight to shutdown, or some kind of low mood, or withdrawal).
Read more on autistic shutdown here.
Meltdowns – panic attacks and neural high jacking
Meltdowns can sometimes be defined as panic attacks; they may look like tantrums; sometimes they can just be bursts of anger or frustration, and they can manifest as tears or extreme sadness. They may be over extremely quickly once the individual has let off steam, or they may last for a much longer duration.
On some occasions, a meltdown is extremely serious, as the individual or people in close proximity may be at risk, e.g. from violent or erratic behaviour.
Some experts describe meltdowns as ‘neural high jacking’, when coherent, rational thought is absent, and what is left is a debilitated state of incoherence.
According to psychologist Dr. Daniel Goleman, what the child does and says during meltdown is simply ‘mental debris’.
Bring on the autistic meltdown!
Sometimes (as an outsider), one can see a meltdown coming, in an autist; and in fact a teacher or carer may even want to want the meltdown to occur, simply so the child can recalibrate, and get the outpouring over and done with in a safe and supportive space.
The teacher may for example spot signs in the classroom, such as the child being easily upset, ‘spoiling for a fight’ or picking an argument, having a lot of nervous energy, or generally becoming withdrawn. There could be specific rituals or behaviours that the child is doing ahead of the meltdown. Maybe for example an anxiety-related stim like clenching and releasing the teeth, or clicking their fingers, or the child may have the self-awareness to realise a meltdown is imminent, and recognise triggers. (As do many adults).
Triggers for autistic meltdown
The meltdown triggers themselves are many and varied; they obviously vary depending on the individual and are usually multifactorial. Elements like sensory overload from sources like lights and noise may play a part (clinicians may describe this as ‘sensory integration dysfunction’); as well as excessive demands (or things that are perceived to be demands by the autistic individual). Excessive socialisation, known stressful situations, and anything that triggers the autist’s quirks or ‘peccadillos’ (e.g. maybe a favourite food has run out, or a play date has been cancelled), can contribute to meltdowns.
It is often said that masking is a factor too; masking or trying to appear ‘typical’ can be very energy depleting. Whether it is trying to fit in at school, attempting to follow social conversations in a group, or blending in with neurotypical colleagues in the workplace, the act of masking one’s autism drains emotional energy, or conceptual ‘mental bandwidth’. A build up of masking, combined with general tiredness and a specific trigger, however minor it is perceived to be, can easily trigger autistic meltdowns.
Therefore, some or all of the triggers described above (as well as others not listed, but relative to the individual) can initiate meltdown. Other everyday factors like tiredness and hunger, as well as hormones, can also play a part. Often, the concept of ‘the straw that broke the camel’s back’ can take place, e.g. something that seems innocuous and not worthy of such a level of upset can tip one over the emotional edge – the proverbial last straw.
Melting down at home, not school
It is not uncommon for autistic children at school to meltdown at home, after a day of blending in, and masking at school – invariably, they are melting down in their safe place, even though the anxiety was building all day. This can lead parents’ concerns about the possibility of an autism diagnosis for their child to be questioned, as those who do not understand the challenges presented by autism may assume the cause of the meltdown is occurring ‘at home’. In such instances, viewpoints like: ‘Well, she seems fine at school’, or ‘Maybe he’s picking up on the parents’ anxiety at home,’ are rarely helpful.
The main challenges presented by autism – difficulties communicating and socialising, sensory challenges (e.g. to noise and light, for example), and specific thinking styles or rigid thought processes that aren’t supported by the learning style at the school – can all cause great anxiety to a child. It’s no wonder that after a day of using up all of their ‘spoons‘, many autistic kids come home and feel comfortable enough to let their frustrations and emotions out. (NB – the reference to spoons relates to the spoon theory, a kind of disability metaphor developed by Christine Miserandino, who has lupus, and uses ‘spoons’ to explain how to ration one’s energy. Read more about the spoon theory here.)
What happens during meltdown, or ‘cognitive debilitation’?
Different individuals react differently – some may meltdown in the more obvious sense, e.g. excessive stimming, tears, anger, arguments and even out-of-control aggression, while others may consciously try to make their meltdown more low key, and private. (The latter is a big concern, as self-harming could be an issue).
For the loved one, educator or carer of an autist, the key to coping with meltdowns is often to get a handle on what triggers that individual, to help reduce factors that are likely to trigger the meltdown. Once it has started, it really needs to run its course – it is, after all, a release, a situation of overwhelm, or a kind of panic attack.
Naturally, it is best not to judge or be cross about the meltdown. Sometimes the individual may appreciate someone being close to them (e.g. in the room, or outside the door); other times, they may need or prefer to be left alone, to work through the process. Autism Parenting Magazine suggests using calming devices like a fidget toy, noise-canceling headphones, or a weighted vest, if appropriate for the individual.
When can we chat?
Once the autist has calmed down (and when they’re ready, which may even be the next day), the family member, carer or educator may find the opportunity to talk about what happened, what triggered the episode, and how everyone handled it. Generally, autists in meltdown mode are unable to discuss anything properly at the time, as their emotional bandwidth is busy trying to recalibrate, and manage their ‘fight or flight’ response. Directly afterwards, they may feel too exhausted to talk. (NB – some families do have to cope with very aggressive and even dangerous meltdowns, and at these times, keeping all individuals safe is the priority. See ‘Interventions for meltdowns’, below.)
The Explosive Child
Dr. Ross Greene has studied and written extensively about what he describes as the ‘inflexible-explosive child’, and has written a book titled: The Explosive Child (HarperCollins), full of fascinating facts and tips.
Rebecca Law, American advocate for autistic children and their families, states in her paper (based on Dr. Green’s concepts): ‘Thoughtful response to agitation, escalation and meltdowns In children with autism spectrum disorders’:
‘Inflexible and explosive children have difficulty managing and controlling emotions associated with frustration. They also have difficulty thinking through ways of resolving frustrating situations. In these children, frustration (usually caused by a demand to ‘shift gears’) often leads to a state of ‘cognitive debilitation’.’
Her paper, based on Dr. Ross Greene’s work, details useful de-escalation techniques, including the tip to offer words that describe the mounting feelings. (E.g. “I know you are really mad that it is time to go! It is hard to stop playing with that toy. I understand.”) Green and Law also advocate framing requests (e.g. from the parent or educator to the child) as either A, B or C requests, with A being vital and non-negotiable (e.g. taking crucial medication), and C being not terribly important (e.g wearing a warm hat).
Law also includes this invaluable gem, which is aimed at the person who is addressing the autistic child who is in meltdown: ‘You need to stop talking, unless your words have a soothing effect [on the autistic individual].’.
Many families of autistic individuals, and autists themselves, say that using movement often helps disperse feelings associated with meltdown. Therefore, having a trampoline to ‘bounce out’ feelings can help, as can activities linked to pressure (e.g. pressing one’s hands against a wall, lying heavily over a Swiss ball, or lying under a weighted blanket, as examples.)
Interventions for meltdowns
A word on interventions for meltdowns – it may be useful, in more relaxed situations, to discuss with the autist their preferences for how their families or their educators ‘deal’ with future meltdowns. Sometimes physical interventions may be required to retain safety, e.g. if more modest de-escalation techniques haven’t worked – these interventions would be classed as restricting an individual’s movement, liberty or freedom to act independently. The National Autistic Society (NAS) states that almost everyone who is autistic has the ability to express a view on how they’d like to be treated, so consent for potential restraining actions should ideally be sought.
(NICE, the National Institute for Health & Care Excellence, advises – ‘Restrictive interventions should only be used if all attempts to diffuse the situation have failed, and the individual becomes aggressive or violent. if possible, an individual who is the same sex as the individual [that requires restraint] should carry out the restraint.’
Noticing triggers for autistic meltdown
Finally, it’s worth as an autistic individual trying to work out one’s own triggers for meltdown – especially if it involves the more private meltdown, that could include self harm (which could in turn include self medicating with alcohol, for example, or controlling food intake.) Having the self awareness to see when one is out of ‘spoons‘, is feeling anxious, and could be triggered into meltdown, is a very valuable skillset to have!
Keeping items to hand that would be useful if one’s trying to manage feelings connected to meltdown (maybe beloved soft toys, weighted blankets, headphones and preferred music, etc) is also a useful way to manage the feelings – as is retreating to a safe place to mentally recalibrate, away from triggers and sensory challenges.
A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism; the information we post here is based purely on our own exposure and experiences. We’d also love your feedback on our posts!
Do you know the phrase ‘burning the candle at both ends’?
Autistic burnout is when the candle is being burned at both ends without enough replenishment to counteract the areas in which an autistic individual especially struggles, or uses up the most energy units – e.g. social, communication and sensory. Everyone, no matter what their neurology, experiences low mood, tiredness and potentially has the capability to burn out – but autistic burnout is slightly different, in that it usually relates to the autist’s deficits and challenges.
Burning the candle at both ends?
The autistic individual (especially, it seems, if female), tends to use up a lot of energy on ‘autistic masking‘, or fitting in (you can read more about energy exertion in our blog about the spoons theory.)
Most autists face some kind of difficulty with fitting in, especially if they are undiagnosed and unaware of their autism, or if they are young and still getting to know social conventions. Avoiding autistic burnout only becomes easier once you know what self care tools you need in your toolbox!
Going back to masking; what would be classed as ‘fitting in’? Maybe engaging in expected conversation at work, appearing unperturbed by sensory difficulties when shopping, and managing the challenges of certain socialisations, e.g. extended family get-togethers or office parties. This ‘masking’ is often required in order to hold down a job, access education services or maintain relationships, and can be an automatic reflex, rather than something calculated. However, the processing power and social energy required to maintain the mask can be very depleting.
Ryan Boren writes eloquently about autistic burnout as follows – “Periods of burnout caused problems at school and work. I would lose executive function and self-care skills. My capacity for sensory and social overload dwindled to near nothing. I avoided speaking and retreated from socializing. I was spent. I couldn’t maintain the facade anymore. I had to stop and pay the price.”
What tends to happen to autists who are responsible for others is that this important element continues to function during burnout – eg. their duties as a parent or carer – but other everyday functions have to be ‘turned off’. Communication may deplete, sensory overload is common, self care skills (perhaps including seemingly simple things like taking care of one’s appearance) become of less importance – essentially, this computer’s operating system is shutting down, so only the essential tasks remain ‘on’. In autistic burnout, the individual may become withdrawn, their voice may become more monotone due to the sheer effort of communicating (some autists may even become non verbal), and they are likely to be very sensitive to sensory input. Many autists experience anxiety, symptoms of low mood, dysthymia or depression during their lives, and during burnout, these conditions could well resurface.
How long does autistic burnout last?
Autistic burnout may last days, more likely weeks, and perhaps a couple of months. Anyone in more longer term burnout than this would likely need a great deal of support in their lives, to become strong and well again. (Severe levels of total burnout are likely to be linked to some kind of large-scale life milestone, or occurrence – the individual would likely not be able to continue to go to work, or stay their place of education, until they recover sufficiently.)
Burnout is a physiological symptom of system overload.
So here’s our take on autistic burnout. Treat lower level autistic burnout as something akin to a migraine. Would we expect someone with a migraine to go to work, merrily do the shopping, look their best and casually chat about trivia? No, they would likely head to bed, and rest.
Burnout is a physiological symptom of system overload. The individual generally needs time to recuperate in a low-demand environment, with as few challenges in the areas of communication, sensory triggers and socialisation as possible.
How is autistic burnout avoided?
Autistic burnout may be avoided by knowing yourself (as an autist), knowing what triggers you, how often you must rest or have social downtime, reducing social activities when you’re feeling sensitive, using self care tools like headphone time when you need to recalibrate…. and removing things or people from your life that deplete your energy bank, rather than fill it up.
In children who don’t yet have this level of self awareness, reducing demands, allowing the child choices in their decision making, reducing socialisation and sensory triggers, and generally allowing rest or down time could be beneficial. (With liaison with their educators.)
Individuals in more severe stages of burnout could need all of the above, as well as talking therapies, health and nutritional support, and the support of any education or work places, to allow the autist to recover and plan any return.
We’d love to hear your thoughts on the matter! Why not read another of our blogs on autism – this one focusses on communication…
Talking Taki-Taki – discussing communication differences between autistic individuals and neurotypicals; and why NT’s find autists ‘different’ (Asperger’s / ASD /ASC)
A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism Spectrum Conditions / Disorders; the information we post here is based purely on our own exposure and experiences. Please share our articles if you find them useful!