We have been asked a few times about ‘stims’, and while we have mentioned them within other articles (see directly below, in an article on autistic meltdown), we thought it would be useful to delve deeper in a single blog post.
Autistic meltdown, or neural high jacking – what is meltdown, how can outsiders deal with it empathetically, and how do autists manage their own meltdowns? (ASD/ASC)
Understanding stims is key to understanding how autists process emotions and sensory input. Stims, and the action of stimming, refers to ‘self stimulating’ behaviours; they’re not limited to autists (many of us twirl our hair, or tap our fingers to an imaginary beat, for example); but most autists stim.
Stims may be used for various reasons; for example in times of anxiety; in periods of happiness or contentment; when the body is in need of regulation; and simply because the individual feels good.
Most people, if they have heard of autism stims, think of hand flapping, which is the stereotypical one used most commonly in the media. But perhaps rightly so, as a repetitive hand movement is a very common stim, in times of dis-regulation, sensory overload or anxiety.
Most autistic individuals stim to some degree; they can be very subtle however, and autists who are late-diagnosed may not even realise that their habitual behaviours are stims. For example, clasping or rubbing one’s hands together, or wrapping hair around a finger.
Here are some examples of physical autistic stimming-
Clapping or flapping the hands, or moving them rhythmically.
Finger clicking or snapping, e.g. with the thumb and third finger.
Beating out a rhythm with the hands or fingers (and feet), to a beat in your head.
Flicking or stroking fingernails.
Playing with jewellery, especially if it has movement, e.g. a ring with a spinning section.
Touching something smoothly tactile, like a watch, a clothing label, or piece of jewellery.
Proprioceptive stims e.g. rocking or moving the body – and as well as a ‘big’ movement, this can be the tiniest movement, for example isolating and clenching a small muscle.
Moving the joints somehow, to achieve a ‘click’ or mobilisation – e.g. moving the joint to the edge of its socket.
Examples of vocal stims can be humming; singing without recognisable words; and making mouth noises (for example sucking on the teeth or cheeks, or clicking the tongue).
Cognitive autism stims
There are also cognitive autistic stims that autists carry out, that seemingly provide some kind of sense of control, comfort or regularity. These could be a particular numerical sum, or counting in a particular formation. (Many autists use echolalia, and sometimes a favoured phrase or number sequence that sounds appealing may be used as a stim.)
There are also other stims, such as: visual stims, e.g. staring at lights or an interesting kinetic picture (like the one at the top of this page), or watching a spinning object; auditory stims, e.g. listening to the same song on a loop; olfactory and oral stims such as sniffing objects or licking and chewing on things; facial tics and features of Tourette syndrome; dermatillomania or picking at the skin (e.g. scabs or hairs), trichotillomania (hair plucking) and also pressure stims – perhaps sitting in a certain way to achieve a sense of pressure.
Self injurious autistic stims
Some individuals may direct a repetitive action on themselves, e.g. hitting their head or face. Stims like this can be detrimental; e.g. in the case of hitting oneself, they are not desirable or helpful in the long term, and can lead to self-harm. In such cases the need to stim may be directed to another object, such as a squeezy toy or boxing punchbag. Using pressure or movement may also be a useful alternative, e.g. pressing the hands against a wall or pressing up from the floor, or bouncing on a Swiss ball. Weighted pressure blankets may also be useful, e.g. to sit or lie under. These ‘tools’ may work to help redress sensory dis-regulation.
Letting off steam
Although some proponents of behavioural training seemingly seek to reduce stims, and frame them as some kind of antisocial behaviour, in fact there is nothing wrong with autistic stims. Remember that autistic individuals may have problems not only with processing feelings, but also sharing their emotions in the expected way. Stims are very often a way of putting an emotion into a physical representation.
So, the above everyday examples of behavioural stims are perfectly normal and acceptable, especially in children who are finding a place in the world; stims should not be discouraged.
They are simply a way of recalibrating, finding a sense of calm, and satisfying an inbuilt need for repetition. “Autistics are easily overloaded, and simply need to release tension more frequently. When I stim, I often feel like an old fashioned boiler letting off pressure; sometimes in tiny bursts, sometimes in huge belches of steam,” writes Kirsten Lindsmith.
Stims can be valuable communicative information, if an autist finds (in that moment) talking difficult. A stim can indicate rising anxiety, for example. This is valuable information for family members accompanying a young autistic child somewhere, and a potential sign that the environment could be stressful.
In the workplace
In situations such as the workplace where autistic stims are not necessarily encouraged or accepted, there are ways to make them less noticeable; e.g. there are many fidget toys or gadgets like pens, chewy stim toys and pieces of tactile jewellery that can divert attention.
Many autistic women for example enjoy having smooth, manicured nails that fulfil a nice sensory need, and touching the nails can be very discreet.
(NB, follower JFC has pointed out that our question: ‘It would be interesting to find out to what extent smoking and vaping is used by autists, to satisfy the need to stim; especially in the workplace’, could be misleading, in that smoking indoors is banned. It was more pondering the concept of the Smoking Break, a social gathering that takes place outside, and whether some autists may smoke or vape to satisfy a stimming need, while also navigating the social landscape. We’d welcome any feedback from smokers/vapers on this matter!)
What else causes autistic stimming?
Sensory challenges are often cited as big causative factors for stims, as the stimming can create a tactile input (e.g. flicking a muslin or blanket, or a clothes label). The action can help self-soothe and calm the individual, if the stim is linked to anxiety or over / under stimulation from noise, lights, socialisation etc.
It’s proposed that stimming can actually cause the release of beta-endorphins in the body, which then causes a feeling of ‘numbness’ from sensory overload, or plain old pleasure.
The main hypotheses and known causes for stimming are: blocking out excess sensory input (in overstimulation); managing emotions; providing extra sensory input (in understimulation); reducing pain; and self-regulating.
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!
This page contains the URLs included within the book ‘Autism from A to Z’ by Kathy Carter; a new, practical guide and information resource collating the most popular articles from this website. It has been created for families and professionals, and curates the latest...
A dual diagnosis of autism and attention deficit hyperactivity disorder (ADHD) is becoming more prevalent now, due to clinicians’ ability to diagnose both neurologies under the latest diagnostic criteria. (The older DSM-4 for example specified that an autism or ‘ASD’ diagnosis was an ‘exclusion criterion’ for ADHD, thereby limiting research in the field – source – Leitner.) The reason why the two neurologies may co-occur is unknown, however there’s thought to be some common underlying etiology, as yet unconfirmed.
It does require a very experienced clinician or multi-disciplinary team to carry out the assessment and subsequent diagnosis, as the two neurologies presenting together can make diagnosis much harder. But why is it harder to spot an individual with an autism spectrum condition (ASC) AND ADHD – for example, if you’re a teacher or family member? Here’s a theory – is it as if the two extremes of each neurology can be softened, or can become less noticeable to outsiders? (Inside, the challenges and conflicts the individual experiences can of course be considerable – but the outer ‘presentation’ can perhaps sometimes appear more typical.) An example of this theory is that autists may typically prefer sticking to their routines and their limitations, whereas those with ADHD may be more impulsive and fearless – the two extremes can potentially mean the individual’s choice at a given time (eg. to climb a high and unknown tree) sits more in the middle; they may be less likely to avoid the activity as it is out of their ‘safe’ and ‘known’ remit of ‘sameness’ (relating to ASC), but also less likely to take a big risk (relating to ADHD / impulsivity).
Autism may be missed if an ADHD diagnosis is given first
It is said that some children with both neurologies are unfortunately having their autism missed, if they get an ADHD diagnosis first. In a study in the journal ‘Paediatrics’, researchers looked at around 1,500 autistic children. They found that those who got an ADHD diagnosis before an autism diagnosis were diagnosed with autism an average of three years later than those who got the autism diagnosis first. They were 30 times more likely to get the autism diagnosis when they were aged six or older. (Source – Harvard University).
Let’s look at the key factors of autism and ADHD
(1)ADHD is defined by impaired functioning in the areas of attention, hyperactivity, and impulsivity. Often, children with ADHD have difficulty focusing on one activity or task; they may be easily distracted; they are often physically unable to sit still. The ‘attention deficit’ wording may be misleading, as this element could be described as an ‘interest’ deficit – eg. the individual can hold their attention easily on something, if they’re interested in it. As with ASC, children with ADHD often have difficulty moving their attention to other activities, when they are asked to do so. (Source – Children and Adults with Attention-Deficit/Hyperactivity Disorder, or CHADD).
(2)Autism is characterised by social and communicative dysfunction, restrictive-repetitive behaviours and sensory challenges. Children with autism are most likely to have hyper-focus, and may be unable to shift their attention to the next task. They are often inflexible when it comes to their routines, with low tolerance for change. Many are highly sensitive or insensitive to sensory input, like light, noise and touch. They may ‘stim’ eg. make gestures such as repeated arm flapping, or oral stims like tongue sucking. (Source – CHADD). (Read our blog on stimming below.)
Autistic stimming, or ‘self stimulating’ behaviour – calming, satisfying and recalibrating
(3)Autistic symptoms are said to be more ‘stable’ than those of ADHD behaviours, which show greater variability in their presentation. (Source – Pourcain et al. (2011). It would therefore be normal for someone diagnosed with both autism and ADHD to present completely differently on different days, and of course to feel very different on different days, depending on which neurology is dominant and what external factors are present (eg. nutrition / sleep / sensory challenges).
(4)Both conditions affect the central nervous system, which is responsible for movement, language, memory, and social and focusing skills. (Source – CHADD).
(5)Studies show that up to 50% of individuals with autism also manifest ADHD symptoms (particularly at pre-school age). Similarly, estimates suggest two-thirds of individuals with ADHD show features of autism – source – Leitner.)
(6)Anxiety and mood disorders, although highly prevalent in those with ASC alone, are even more prevalent in individuals who have ADHD. (Source – Lipkin et al).
A dual diagnosis
The issue in terms of diagnosis is that both autism and ADHD often include difficulties in attention, communication with peers, impulsivity, and various degrees of restlessness or hyperactivity. Both neurologies can cause significant behavioural, academic, emotional, and adaptive problems in all settings.
However in our minds here at Spectra.blog, having both neurologies does not necessarily equate to twice the challenges. Maybe just a different set of challenges!
There are perhaps positives to be gleaned from having autism AND ADHD, over having autism on its own, in terms of some of the restrictive and limiting elements of autism being potentially reduced at certain times, when the more impulsive and sociable elements of ADHD are dominant.
Warding off anxiety
We must be upfront. It is proposed that there’s a risk for ‘increased severity of psycho-social problems’ (depression and anxiety etc), with a dual diagnosis of ASC and ADHD. (Source – Gadow et al., 2004; Yerys et al., 2009). However, having an understanding about the neurologies at an early age (for the individual) surely helps families and educators (and the autist themselves) to manage their challenges, in order to ward off such problems? (Eg. talking therapies like CBT, mindfulness techniques, dietary support or management, and skills training to help cope with daily life, eg. ‘social skills’ training via a school programme.)
In a study titled ‘Anxiety and Mood Disorder in Children With Autism Spectrum Disorder and ADHD’, it was reported that anxiety disorder and mood disorder, while very common in autism, are even more common when children also have ADHD. Knowing in advance that anxiety and mood disorders are a big risk factor for individuals with ASC and ADHD means interventions and supports can be given in advance, to help promote good mental health. Adaptions can be made and demands can be reduced, in order to prevent anxiety in the individual. It is a good idea for the autist themselves to gain an understanding of their neurology, how they present on different days (eg. which condition is more dominant, and how that feels), and also what external factors (food, sleep etc) are contributory.
Medication to help readdress the chemical imbalances of ADHD in older children or adults may be suggested/prescribed, however it is said to have the potential to be LESS effective for individuals with ASC AND ADHD, and may cause more side effects, including social withdrawal, depression, and irritability, as opposed to when the medications were used to treat ADHD alone. (Source – CHADD). The National Institute for Health and Care Excellence (NICE) recommends that the first steps in treatment for ADHD for young people include help with behaviour and stress management as well as educational support – children under school age should not be given medication for ADHD, they advise. (Source – NAS.)
Do autism and ADHD together ‘buffer’ themselves, somehow?
We would have to collate opinions of individuals with both neurologies, in order for us to comment fairly (and we actively invite them to – if you have autism and ADHD, please comment, or get in touch!). But surely this duality of autism and ADHD has the potential to provide some kind of ‘buffering’ effect, in terms of reducing extreme or unsafe behaviours? In ADHD children, when the hyperactivity and impulsivity would be more noticeable, this ‘buffering’ element could perhaps be beneficial to an individual’s safety; eg. if the impulsivity of ADHD was offset somehow by a more rational and logical mindset.
Having autism and ADHD, can however mean that outsiders like educators and extended family members can’t initially see that the behaviours the person has are atypical. Eg. a dual diagnosis of ASC and ADHD can presumably mean the individual could present more like a neurotypical (NT or non-autistic) person. It doesn’t mean they feel NT inside of course, or that their challenges are reduced.
ADHD, like autism, is widely said to be a lifelong condition, however the characteristics may alter with age, eg. the hyperactivity element is said to be much more common in children than in adults. Some adults report a large decrease in symptoms of ADHD as a person ages, however this could be due to their own management of their challenges. This reduction in overt signs leads some experts to propose that ADHD isn’t lifelong; however the general consensus is that ADHD DOESN’T GO AWAY.
What is the benefit of clinicians being able to diagnose autism and ADHD?
A dual diagnosis of ASC and ADHD potentially allows for more efficient clinical management of such individuals, and ‘clears the way for a more precise scientific understanding of the overlap of these two disorders’ – source – Leitner.
As we have described, it allows the individual to gain an understanding of their neurology, in a way that many NTs do not have – after all, anxiety and depression are prevalent across the population, eg. across all neurologies. Perhaps understanding one’s own neurology, in the way that many autists do, is a benefit in terms of safeguarding mental health and knowing how to administer ‘self-care’? (Read our blog on the Spoons Theory, for more info).
The emotional cutlery drawer of spoons, and the ‘social hangover’ (ASD, ASC, Asperger’s)
Lined up toys; autistic trait?
If any parent or educator is concerned that a child is exhibiting disproportionate levels of anxiety, plus a kind of ‘double-sided personality’, with moods that are very cyclical, as well as the usual signs of autism like social and communicative issues, repetitive behaviours (like lining toys up, in our photo),and sensory challenges, it may be worth investigating the possibility of a co-morbid ADHD diagnosis too.
Or at least, initially keeping a diary of signs and behaviours, and external factors.
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.
Read more on co-existing autism conditions below –
Co-morbidity and autism spectrum conditions, or ASCs (ASD, Asperger’s)
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 to be on a different wavelength; 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, may find you quirky / on a different wavelength. It’s a bitter pill to swallow when you’re just being yourself. (Read about the ‘double empathy problem’ below).
Here’s why I think autists can seem on a different wavelength to other individuals: (Read about the author of this blog HERE).
1.First impressions. As detailed further below, autistics can produce looks that are difficult to interpret by neurotypical individuals (NTs), and may have lower vocal prosody. This means others’ first impressions of us can be confused, and we may appear rude, or not interested in making a connection.
2.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’.”
3.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.
4.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 – OUTRAGEOUSLY – 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 (SUPPOSEDLY) tongue in cheek award.)
Double empathy issues
There’s a wonderful theory addressing empathy problems between autistic and non-autistic people called the ‘double empathy problem’. Simply put, the theory of the double empathy problem suggests that when people with very different experiences of the world interact with one another, they will struggle to empathise with each other. This is likely to be exacerbated through differences in language use and comprehension. Dr Damian Milton first started to publish theoretical accounts of this issue in the early 2010s, yet similar ideas can be found in the work of Luke Beardon regarding ‘cross-neurological theory of mind’ and in that of the philosopher Ian Hacking, according to the National Autistic Society.
(More recently, research by Elizabeth Sheppard and team at the University of Nottingham, Brett Heasman at the London School of Economics, and Noah Sasson at the University of Texas at Dallas, have shown that in experimental conditions, non-autistic people struggled to read the emotions of autistic participants, or form negative first impressions of autistic people. Such evidence would suggest that the dominant psychological theories of autism are partial explanations at best. According to the theory of the ‘double empathy problem’, these issues are not due to autistic cognition alone, but a breakdown in reciprocity and mutual understanding that can happen between people with very differing ways of experiencing the world. This theory would also suggest that those with similar experiences are more likely to form connections and a level of understanding, which has ramifications in regard to autistic people being able to meet one another.)
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 confused by autists
Autistics are almost universally used to being treated without respect by some of the people around them (again, this is NOT OK, but it happens).
If for example, as an autistic, you are the organised, scheduling-obsessed 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 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 quirky 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 quirky; 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.
NB this post was written before the author learned about polyvagal theories. If you can get your head around this wonderful theory of the autonomic nervous system, it helps explain the neurobiology of meltdown (when fight and shutdown combine, as a ‘mixed state’) and shutdown (when FLIGHT and shutdown combine, as a ‘mixed state’), simply. There’s lots of information available (look out for Dr Porges’ and Deb Dana’s work). I mention it in this blog, that discusses social engagement and polyvagal theory).
Autistic social engagement challenges can improve – and NOT by masking
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!