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Autistic masking – everything you wanted to know about ‘passing’ or ‘camouflaging’ as an autist

Autistic masking – everything you wanted to know about ‘passing’ or ‘camouflaging’ as an autist

We have written a lot about autistic masking, but haven’t dedicated a single article to it – so here it is.

Autists commonly experience difficulties in key areas including communication, socialisation and sensory challenges. (It’s also common for those on the autism spectrum to experience emotional rigidity and repetitive thought processes or behaviours.)

Many autistic individuals, subconsciously or otherwise, end up masking

Looking at the areas of socialisation and communication, it begins to become clear why many autistic individuals, (subconsciously or otherwise), end up masking – e.g. presenting oneself differently in one’s behaviour, in order to hide certain traits, or mimic neurotypical behaviours.

So it is a way of ‘fitting in’ and meeting people’s expectations.

Autistic masking – getting through the day at work, in school, and at home

A side on image of a white female used to illustrate autism articleMasking may sound quite superficial, but it is in fact necessary to get through the day for many autists; for example, earning a wage in order to feed the family; therefore fitting in at work, meeting social conventions and carrying out the required workplace tasks (often without relevant support).

In places of education, this ‘fitting in’ is usually required in order to access the education on offer without confrontation or revealing one’s struggles, as well as to meet social conventions, potentially avoid punishments, and avoid standing out or being ostracised or bullied.

Masking uses up valuable energy units

In everyday life, masking may be required a lot of the time to simply achieve life’s daily requirements; e.g chatting to a cashier at the supermarket, being friendly towards the neighbours, or mingling at a family function. That is not to say that the autistic individual doesn’t want to be friendly, and chat to the cashier, neighbour or family member – just that this very action takes a lot of mental processing, and energy units. 

Autism is after all an issue of processing, so every interaction for the autist takes up energy units. If the autistic individual had a completely full tank of energy units, then chatting to the cashier, family member or neighbour would probably not represent such a problem.

But if most of the energy units have been allocated with daily executive functioning, there’s very little processing data available, making communication of any kind an effort.

Autism – extensive processing effort

Autistic individuals may develop a set of social skills or ‘mask’ that helps them fit in with others,.

Autistic individuals may develop a set of social skills or ‘mask’ that helps them fit in with others,.

Rather than simply seeing Mary the neighbour and having a chat, the energy-depleted autist is likely to be going through a mental tick list as they see the neighbour. ‘Who is that? It’s Mary. I need to say hello to Mary. Should I ask her how her pet is? What’s her pet’s name? Will she say hello to me first?’ 

Each thought process takes mental and processing effort – the autist may even rehearse the conversation in his or her head as they approach, to make sure it sounds appropriate. Remember, they’re doing this for the neighbour’s benefit, not for their own. How exhausting!

The autist’s natural (and probably preferred) state would be NOT to say hello on this occasion, just to go home and recalibrate after the day’s challenges. But in order to meet social convention, the autist will probably be friendly, and try to ‘pass’ as a neurologically-appropriate individual.

(Hence why autistic masking is also known  as ‘passing’. In clinical terms, it is also described as camouflaging.)

Interacting with other people can be draining

Multiply this effort dozens of times each day, and we see that due to the autist’s differences in processing and communication, interacting with other people can be draining. Hence a ‘mask’ is used to appear neurotypical, or to simply pass as a functional individual who’s following social convention.

Two men walking, to illustrate autism articleRemember, this isn’t a reflection on the autist’s desire to interact with the other person – the autist may very much want to communicate with them – it’s simply relative to the amount of mental processing required to do so, when the energy bank is already depleted from processing everything else in the environment that afternoon. (E.g the bright sunlight, the din of background noise on the bus, and the busy neighbourhood.)

Being the best version of one’s self

Autistic masking doesn’t just take place with non-family members – autists may mask around their close friends, spouses, parents, children and other family members too, not because they can’t be themselves, but because they love their close friends and family members so much that they don’t want to cause concern and make the family member worry that there’s something wrong. Maybe the autist, if feeling low, anxious or tired, just wants to appear as the best version of themselves? Like maximising your appearance, putting on a smarter outfit, or putting on make up.

Two females talking _ to illustrate communication between NTs and autistics: ASC ASDIn an ideal world, no masking would be required around loved ones. A family member, knowing their autistic loved one had just done the school run, returned from the office, been shopping or had generally had a tiring day, would knowingly stick their thumb up with a smiling, enquiring face, to silently question, ‘Are you ok?’

And the autist would smile and stick their thumb up to reply, ‘Yes, I’m okay, thank you for understanding and pre-empting my mental exhaustion, spoon depletion and social hangover, but I’m just not up to talking right now, or at least not taking about non essential things.’ And all would be well. But families aren’t all like that, are they! It’s simply a matter of education and awareness, however.

(It’s important to note that young children don’t have that awareness of their parents’ sensitivities, as described above – so the autistic parent is likely to mask, so as not to concern their child.)

Hence, the autist masks to make their families feel happy, often at their own expense, not because they’re unhappy about being themselves, but because they care.

Childhood autistic masking

Three girls are shown to illustrate that echolalia can be an early sign of autism.

It is thought that autistic girls ‘mask’ more than boys.

It’s worthwhile mentioning childhood masking, specifically. Autistic women mask more than men, and it would seem that autistic girls mask more than boys. Masking is a way of navigating reality – remember, it may be subconscious – and for autistic girls, it’s a valuable tool to fit in with peers. But successful masking can lead outsiders to be so convinced of the individual’s ‘typicality’ that their autism goes unnoticed. Additionally, it’s common for a child (of either gender) to ‘mask’ at school and ‘let it all out’ when they return home to the safety of their own surroundings, and people who ‘get’ them.

The website Spectrum News, reporting on a study, states: ‘[Researchers found that autistic boys] might be overactive or appear to misbehave, whereas girls more often seem anxious or depressed.’

It is also interesting to note that masking can include the hiding of self-stimulatory behaviours (stims), like fidgeting or tapping. The autistic individual may bite their cheek, clench their fists or flex and relax a muscle – all things that probably go unnoticed, but help to self-regulate the autist.

Masking – good or bad?

In summary, autistic masking in small measures is maybe not bad thing, to help one’s self esteem, and feel like less of an outsider. However, too much masking, which can occur long-term when the autist is not yet diagnosed as being autistic, can be hugely depleting; it is also associated with mental health challenges like anxiety and depression. Once autism diagnosis occurs, it does also throw up the question, who’s the real me? And too much masking can lead to social hangovers, shutdown and autistic burnout. 

It could be said that getting the balance right between self-care and being true to one’s autistic-self, and fitting into a predominantly neurotypical society and masking along the way, is the eternal holy grail for most autistic individuals.

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!

Why not also read our blog on autistic communication differences:

Talking Taki-Taki – discussing communication differences between autistic individuals and neurotypicals; and why NT’s find autists ‘different’ (Asperger’s / ASD /ASC)

Autism and anxiety – if A is for autism, then it is most definitely also for anxiety

Autism and anxiety – if A is for autism, then it is most definitely also for anxiety

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…

A man is shown in shadow to illustrate an article on autismHowever 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

Tony Attwood’s disparagement humour. Good-natured fun, or bullying, exploitative and offensive?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

Two men walking, to illustrate autism articleSo 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.

Man on bed to illustrate that Autistic burnout is a physiological symptom of system overload

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?

Mother and son - illustrating an article stating - If you are the parent of a child that you think may be on the autistic spectrum, you will almost definitely get asked the question: ‘But why would you want to give him or her a label?’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!

Why are autists irritating to other individuals? Examining: confused first impressions; NTs’ reluctance to interact with ‘different’ people; as well as autists’ quirks & behaviours, and ‘failure to be neurotypical’

Why are autists irritating to other individuals? Examining: confused first impressions; NTs’ reluctance to interact with ‘different’ people; as well as autists’ quirks & behaviours, and ‘failure to be neurotypical’

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…”

Two men walking, to illustrate autism articleA 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.)

First impressions

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.

A side on image of a white female used to illustrate autism articleOne 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

Two females talking _ to illustrate communication between NTs and autistics: ASC ASDIn 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,.

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

Woman with eyes closed _ to illustrate article on communication between NTs and autisticsIt’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!

To conclude

woman in black and white - to illustrate autism article re black and white thinking stylesSo 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!

“I promised I would change and I did” – did Professor Tony Attwood’s autism conference pacify the #actuallyautistic community?

“I promised I would change and I did” – did Professor Tony Attwood’s autism conference pacify the #actuallyautistic community?

With the Association for Child And Adolescent Mental Health (ACAMH)’s logo looming large behind the stage in Sheffield, and serving as a reminder that today was about improving understanding of mental health issues, Professor Tony Atwood was faced with a challenge at the talk: ‘Tony Attwood – What you need to know about Autism’, on May fifteenth, 2019. (Photo of Professor Attwood by ACMAH).

Would Professor Attwood, a seasoned speaker, continue the rhetoric that has included the disparagement of autistic individuals, in order to get a laugh from delegates predominately consisting of clinicians and parents of autistic children?

Or, would he develop a 250 strong community of inclusion and understanding whose delegates went away enlightened? The answer is – both.

Let’s look at the positives of Professor Tony Attwood’s autism presentation, of which there were many.

A side on image of a white female used to illustrate autism article(1)Professor Attwood spoke of the increased awareness of the prominence of autistic girls and females. He detailed the ‘fake it till you make it’ practice of ‘camouflaging’ among young female autists, and indicated the risk of predatory male characters towards young female autists [the word ‘autists’ being the author of this blog’s preferred short-hand term for ‘autistic individuals’ – it isn’t a term that Professor Atwood used]. He explained that female autistics may lack a ‘social identity’.

(2)He spoke at length about autists’ ability to empathise (debunking out of date theories to the contrary). “They [autistics] just didn’t read the signals; it’s not that they don’t care.” [Yes, the ‘they’ language was prevalent!] Professor Attwood described ‘empathetic attunement’ in autists; a sixth sense of knowing what a third party feels, or their mood, which was a breath of fresh air, when many professional clinicians consider autists not to have empathy. (However, live on Professor Attwood’s website is the dated statement: ‘Someone with Asperger’s syndrome… has limited social understanding and empathy.’ Perhaps it is time to update the website?!)

(3)Professor Attwood changed his anecdotal content a little, when he took an anecdote he’s used before, when describing ‘the apple doesn’t fall far from the tree’ concept; specifically when parents of an autistic child are present for their child’s diagnosis with Tony, and the father is seemingly also autistic. Instead of ‘taking the mickey’ out of the father’s voice and imitating the man as if he were a robot, this time there was no robotic voice.

(4)He acknowledged that autistic individuals may have a fantastic sense of humour, and often excel in wordplay, and puns.

(5)Professor Attwood did stress that his goal “Is [autistic] self acceptance, not to cure [autism]”, in the context of psychotherapy; e.g. non-pathologising.

(6)He waxed lyrical about the benefits of music and art therapy as therapeutic treatments to explore trauma, after an event.

(7)Professor Atwood spoke positively about adapting Cognitive Behavioural Therapy (CBT) with components of yoga, mindfulness and music therapy, to help tackle depression.

Three girls are shown to illustrate that echolalia can be an early sign of autism.He also gave specific adaptions based on the autistic individual’s learning profile, and gave recommendations regarding how to adapt the therapy, e.g. using visual clues and experiential tasks (e.g learning through experience, and reflecting).

He later advised that therapists using CBT with autists should definitely have experience of autism, and detailed the concept of giving parents CBT skills.

(8)Professor Attwood showcased some useful emotion games for autistic children, to improve their social skills and help reduce their anxiety, if they feel they ‘don’t fit in’. (Although the narrative didn’t also stress the importance of teaching neurotypical or non-autistic individuals (NTs) to accept autists’ differences!)

(9)He neatly turned his disparagement humour on NTs, saying that, “You have to feel sorry for them; they’re fragile flowers that wilt and die , if not hugged regularly”, when discussing autistics’ propensity to avoid excessive hugging.

(10)Professor Attwood also suggested that lyrics, music playlists, poetry, writing and art are forms of eloquent expression, in terms of researching how to tackle depression in autists. A nice, forward-thinking attitude!

(11)He suggested some very useful therapeutic strategies such as using a favourite TV show or film scene to help an autist describe their feelings, emphasising the importance of recognising one’s own feelings, to help promote good mental health.

(12)Professor Attwood did acknowledge the benefits of using technology to communicate from a social point of view, saying, “They [e.g. autistic individuals] can disclose their inner self through typing, not talking.’

(13)He mentioned the brilliant concept of using a Fitbit watch to check an autist’s heart rate, which increases under anxiety or stress, e.g. as a self-monitoring device. (And a tool for parents to monitor WHEN there’s a heart rate peak, e.g. to use as valuable data to prove the eminence of a child’s anxiety, and the locality or environment when the levels peaked).

(14)Professor Attwood did promote mentoring and advice from ‘actually autistic’ individuals, saying, “The repository of autism is there, with the knowledge,” when describing how autists had helped and given tips in response to his online ‘Ask Dr Tony’ series.
Woman with eyes closed _ to illustrate article on communication between NTs and autisticsHe also said psychotherapy for autists should ideally be designed and delivered by autistic individuals, citing four autistic psychologists that he personally knew.

(15)He did detail the concept of the ‘autistic energy account’, although mentioning the spoons theory, which autists tend to use, would have been a nice way to engage with the autistic community.

(16)With the narrative among some people in the UK that home-schooling may be a bad thing, Tony praised the concept of home-schooling young autists (with options or conditions), explaining that home-schooling had ‘saved his sister in law’s life’, in her teens.

(17)He did acknowledge the importance of sensory input as a trigger for anxiety, e.g. “In your bedroom [as an autist], your difficulties dissolve; you can manage your sensory input.”

(18)Although it wasn’t presented due to over-running timewise, there were some really excellent slides at the end (supplied to delegates), which referenced the ‘Self-affirmation Pledge’, ‘I am not defective, I am different’), and detailed a plan for dealing with a ‘Depression Attack’, that included removal from triggering environments and situations.

However, whilst the autistic individuals in the audience relished all of the above content, there was an issue with some of the LANGUAGE used. Here are some of the more negative elements of the event:

(1)The ‘othering’ language was prevalent, with Professor Attwood literally using ‘us and them’ language. (Also using identity first language e.g. ‘person with autism’, which many autists tend not to use.) Incidentally, the ‘othering’ narrative was also picked up by the mother of an autistic teen who had joined her at the conference.
Two females talking _ to illustrate communication between NTs and autistics: ASC ASDThe Mum was mortified at the ‘them and us’ language, and obviously distressed by it.

(2)There were many examples of ‘presenting banter’ to get a laugh. Described by a fan of Tony’s presenting style as ‘sardonic’, they’re as follows:

*The anecdote of the male aspie who when asked whether a female looked fat in a dress, replied, “No, you look obese’. Cue audience laughter.

*When describing the aspie chid, who suggests to a neighbour that she wears a hat to cover up her big ears. (Sourced from a Judge Judy book on teaching social skills). Cue laughter.

*When describing an autistic child whose mother is upset, and who isn’t clear on what comfort to offer. To the audience: “If YOU don’t know what’s missing [in the scenario], YOU may need a diagnostic assessment”. Cue laughter.

*When recalling a man from Tony’s clinic, who began complimenting his wife once in possession of Tony’s ‘compliment guide’ [used to help clinicians teach social skills]; but stopped the wife’s compliments, once the guide was lost. Cue laughter.

*The tongue in cheek comment that ‘Cats are autistic dogs’ (cue laughter). While there’s a book called ‘All cats have Asperger Syndrome’ by Kathy Hoopman, whose books are reportedly loved by autistic children, this is the kind of joke that sounds wrong from a non-autistic person.

*Using the ‘we and them’ narrative to describe a child who had assaulted a teacher by poking her with a pencil. “WE (NTs) THINK it – we don’t DO it.” This language would undoubtedly leave the autistic delegates feeling ‘othered’.

(3)There were copious references to Professor’ autistic son Will, whose autism was missed in childhood:

“He goes on and on, and just doesn’t get to the point!”
(When describing his son’s prison sentence). “[At least] we got respite care when he was in prison, and knew where he was.” (Cue laughter). This narrative felt uncomfortable, to a degree.

(4)There were also a number of sweeping generalisations, e.g:

“People with autism interrupt all the time.”
“If you make a mistake, the first person to correct you has autism.”
(The irony of this constructively critical article ‘correcting’ Tony isn’t lost on us!)
A wince-inducing reference to autists being like Dr Jeckyl and Mr Hyde, when describing autistic masking.
The statement that “Autism occurs when you [e.g. the autist] walk out of the room”, meaning that when an autist retreats to their bedroom for solitude, their challenges are reduced. True, but a poor over-simplification, suggesting that socialisation is always the main issue, or stressor.

(5)The statement that parents of autistic adolescents should “Provide a plan or schedule [after the child has left school], as they may not leave their castle [e.g. their room is their safe place, or castle], or may fill their time with Minecraft, or solitude.”
Professor Attwood had already stated that young autists need solitude ‘to feel better’, so it was a shame to suggest that parents need to provide social plans to prevent the aloneness that the teenage autist would actually need, in order to recalibrate. A good point explored further by Tony in the Q&As, but over-simplified in the above sentence.

(6)The (presumably) tongue in cheek generalisation that adolescent female autists may choose either: “Promiscuity, as at least I will be popular – or drugs, as at least I will be happy”, when describing teenage autistic girls as “Either puritanical, or using their sexuality to be popular.” There was for example a teenage autistic delegate in the room, who understandably may have felt downbeat about this impending life forecast.

(7)Using the wrong pro-nouns to describe a transgender woman.

(8)Alluding to the frustrating ‘We are all a little bit autistic’ narrative, when stating: “Autistic characterisations are like a jigsaw of 100 pieces [e.g. 100 autistic traits] – I have never met a person with less than 20 pieces, and never met someone with autism with 100.” (Although carefully noted, this may not be absolutely verbatim; so alluding to neurotypicals as people, rather than autists as people too, was hopefully not the intention here; although another delegate did also pick up on the specific language used here.)

(9)Professor Attwood didn’t specifically mention autistic stimming at all, and made a comment along the lines of, “I don’t like the American stim comment; you [eg. as an autistic individual] do it as its soothing”, seemingly disliking the phrase itself, but not acknowledging stimming’s links to environment, sensory regulation etc. (See below).

Autistic stimming, or ‘self stimulating’ behaviour – calming, satisfying and recalibrating

(10)A brief mention of the ‘Who falls in love with an aspie?’ narrative, and the observance that many wives of autistics are nurses. (This is apparently true in Tony’s clinical experience, but lends kudos to the autist thinking that they will only be loved by someone who wants to repair or nurse them.)

So there we have it – more positive than negatives – a success, surely?

With a general feeling among the #actuallyautistic advocates present that Professor Attwood had toned down the disparagement humour (compared to previous events), the day finished on a good note, when Sarah Jane Harvey of Agony Autie proposed to Tony that he join her, on one of her Vlogs.

Explaining that she didn’t always like his rhetoric towards autistics, Professor Attwood wholeheartedly agreed to the proposal, saying that if autistic individuals wanted to correct him he’d welcome their input. When writer Kate Fox commented on his reduced use of disparagement humour on the day, Professor Attwood explained that “I promised I would, and I did”. We’re not sure to whom he promised, but it is definitely a step in the right direction!

Respectful language

In balance, there was a lot of useful information at the conference presented for parents and clinicians, and plenty of encouraging concepts concerning managing stress and anxiety. The criticisms from #actuallyautistic individuals mainly concern language. (After all, other minorities such as ethnic groups now have more respectful language. This website details the concept of respectful language very well, advising: ‘Be sure to avoid language that stereotypes or patronises’.)

The simple change from the word ‘they’ to either ‘autistics’ or ‘autistic individuals’ would go a long way to aid inclusion, and avoid ‘othering’.

The host organisation (ACAMH) was quick to respond to questions fielded ahead of the event (which was very professionally run), and perhaps were the advocates of Tony using less disparagement humour?! The venue had quiet rooms, roomy seats, plenty of breaks and the sound system was very good – the Q&As were well managed by the hosts, and the live-streaming audience were catered to well. So, on balance? A generally good experience, with a simple request to use more respectful language moving forward, as #autisticsdeservebetter.

NB – edited update – a reader has questioned whether an objection to the word ‘they’ is because it’s a gender neutral pronoun for autistic people, as opposed to ‘he’ or ‘she’. Just to be clear, that isn’t the issue at all, the reference to ‘they’ and ‘them’ is not gender-related, but related to autistic and non-autistic (neurotypical). So, to clarify, ‘they’ meaning autistic, and ‘we’ or ‘us’ meaning NT. 

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!

Autistic meltdown, or neural high jacking – what is meltdown, how can outsiders deal with it empathetically, and how do autists manage their own meltdowns?

Autistic meltdown, or neural high jacking – what is meltdown, how can outsiders deal with it empathetically, and how do autists manage their own meltdowns?

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

rl in black and white to illustrate autism article on black and white thinkingMeltdowns 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

girl ball pool - illustrating autism article on spectra.blogThe 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.

Masking

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

female child - for autism article on spectra.blogIt 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.

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’:

Children playing - for autism article on spectra.blog‘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].’.

Marvellous movement

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

A female child - for autism articleFinally, 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!