Thanet Writers Research Autism Spectrum Condition

Writer L R Griff researches autism spectrum condition on behalf of Thanet Writers.

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So you’ve decided that autism will play a part in your story. Your main character may have autism, or their child, or their brother and/or sister, parent or they may be working at a Special Educational Needs school, so… now what? It can be a daunting topic, so how do you break it down?

Well, one needs to remember that people with autism are people first. Their autism is not them and even those with the most ‘severe’ forms of autism have personalities, with parents reporting a certain ‘cheekiness’ or ‘curiosity’ in their child, and who would know them best?

Over the last couple of decades Autism has been gaining traction in awareness in media and in communities. In the UK as many as 700,000 (1 in 100) people are diagnosed with autism, and it effects more than 2.8 million people including friends, families and carers.

It is a lifelong developmental disability that affects how the world is perceived and how one interacts with others. While children may get mentioned the most, they don’t grow out of it. Males are diagnosed more often than females – but it isn’t quite yet decided as to whether this is due to it genuinely being more common in males, or because the diagnostic criteria needs to be re-vamped to cover the female symptoms of autism too.

Autism is a spectrum condition – much like a colour spectrum, no two shades are identical. That means that symptoms and/or behaviours attributed to the condition are different or vary from person to person – but that’s not what a writer needs to focus on first when writing a person with autism into their work.

There are two extremes of autism portrayed in the media, which people are most familiar with, however a person with autism can sit anywhere in between. Those with ‘lower functioning’ autism stereotypically are non-verbal and ‘stim’ (rock, flail, flap) regularly to help moderate their senses. Their mind is constantly bombarded by information that they struggle to process, from sights and sounds, to demands given. They are diagnosed relatively early in life. Whereas ‘higher functioning’ individuals are stereotypically verbal and may not stim as much or at all. Their processing issues mostly occur in social situations and therefore they may not be diagnosed until they reach their school years – some not until much later on in life.

When writing autism one must first develop the person they wish to write about, from their family life to their personality. Sometimes their social class or ethnic background is a key factor in how their autism affects them and their family, as in some situations, their families can become isolated due to this condition and other mental health issues, such as anxiety and depression, can develop or be exasperated.

For example, in South Korea, mothers may ‘confess’ to abusing their children to explain their symptoms rather than admit to having autism in their family. This ultimately results in being ostracised from the community and potentially resulting in a delayed diagnosis in those who have the condition. It should also be noted that in South Korea the diagnosis rate for autism is exceedingly high and many researchers believe it is due to the diagnosis criteria not being adapted to suit Korean culture, i.e. Koreans believe it to be rude to make eye-contact, and avoidance of eye-contact is a key symptom that is looked for in diagnoses.

Whether your character is male or female has a different impact on how autism affects their daily lives. Autism is widely accepted to effect males and females differently, but it is not just in a biological setting, but a societal one. For example, males in society are widely accepted to avoid social situations – particularly teenagers who have a growing stereotype of sitting in their rooms and playing video games. This may be a teenager enjoying his own company and video games, or it may be a young person with autism who has developed a fixation that is being shrugged off as a part of growing up. The implications of this can be detrimental to mental health either way, but can be particularly worse for someone who, when hyper-focusing on something, may entirely forget that they need to sleep, eat or bathe. Allowing someone to hyper-focus because ‘that is who they are’ can hinder their ability to cope when this routine is broken, so your character will be effected by whether or not they’ve been taught to deal with interruptions in what interests them.

Meanwhile, females are more social (or widely believed to be more so). As a result they often desire to interact with others but this can fail, and when they fail they adapt and create a mask of ‘normality’, which results in struggles later on when trying to let others know that they do, in fact, suffer. One has to remember that keeping up the façade wastes energy that neuro-typical (NT) people do not need to spend when interacting daily. Males also struggle with this, it should be noted, but it is more often reported as being an issue from females with the condition.

This leads onto another key issue that one needs to consider: males often get diagnosed earlier than females – not always but more often. This is due to the aforementioned coping mechanisms that females learn in order to best socialise. The earlier a diagnosis the earlier help can be brought in to stop unhealthy coping mechanisms. Those diagnosed in their late teens or later often report self-medicating, such as resorting to heavy drinking to try to ‘fix’ their social anxiety, or even becoming reliant on drugs. There are high reports of self-harm as depression and autism are co-morbid.

34% of children with autism have reported bullying to be the worst thing about school, so it may be prudent to keep this in mind. While many females with autism mention their desire for social contact, this desire can wane with age and experience.

With support, particularly early support, people with autism can be taught how to effectively handle over-stimulation, such as removing themselves from an exasperating environment as opposed to self-injurious behaviour. They can gain help in learning about their own unique triggers, such as being sensitive to pressure or smells, and how to best deal with them. Over-stimulation can lead to what is referred to as ‘meltdowns’, which, to onlookers, can look like a child having a tantrum, but they are far worse in consequence. The difference is that the trigger for a tantrum can be used to stop one – such as a parent giving a child a sweet to pacify them. Meltdowns can last for hours (some noted as lasting for 16 hours or more) and can leave the one experiencing it emotionally, mentally and physically drained and traumatised. Triggers for these can have a lasting effect, such as taking years before they can hear the ‘happy birthday’ song without getting distressed in apprehension. Different people have different thresholds for what will trigger a meltdown, and the results can range from intense flapping and rocking to aggression – biting, hair pulling etc, to self-injurious behaviour. Anything they can do to make the over-stimulation stop.

In these situations they may isolate themselves, if they’ve learnt to. Some resort to stripping as clothing can over-stimulate them, or others may hide under layers and layers of blankets for the comfort of the pressure.

A parent’s social standing or financial income can affect how one’s autism is treated. Higher income can result in better or tailor-made care and education for one with autism, and as a result a writer should take this into consideration when developing their character.

Not only this, how well equipped their parents were with raising a child on the spectrum, and how ‘severe’ it is. Some parents have absolutely no knowledge about autism until they are lumped with a diagnosis, others see the signs a mile off and start preparing for it from day one. Some parents think that the behaviour is normal, maybe because they’ve never had a baby before, but slowly realise something needs to be addressed – whereas others never quite want to admit their child is ‘different’, possibly due to their own backgrounds.

All this accumulates into how a person is raised with autism, whether they learn appropriate skills and coping mechanisms. If your character with autism is an adult, this will play a fundamental role in how they present themselves, how confident they are and how they interact with others.

Not only this, there are a lot of persisting stereotypes that will also affect your character, such as whether people with autism have imagination or not. There are lots of children with autism that present ability to play make belief, but due to misinformation, people often believe that those with autism are incapable of being imaginative and thus children diagnosed with autism happen to not have that particular creative muscle challenged or exercised. Just because your character has autism does not mean they aren’t creative or imaginative, it’s just how they process and present this particular part of their mind may be different from NTs.

As previously mentioned before, people with autism often have sensory processing issues – some even outright having Sensory Processing Disorder (SPD) attached to their autism diagnosis, but even that can vary in how it affects people.

There are several senses and when writing a person with autism and SPD, one has to be consistent in how these senses react under certain stimulus. For example, if your character is hypersensitive to sounds, they may hear sounds that others may not hear – or be sensitive to certain pitches. Meanwhile, someone who is hyposensitive to sounds may enjoy clicking their fingers against their ears or resting their heads on speakers.

Someone who is hypersensitive to touch may become fearful in crowds, possibly to the point of screaming or sweating, or flapping to reduce the over-stimulation, and they may scream when touched. Another who is hyposensitive may be completely unaware of other people’s personal spaces and sit too close. They may be completely unaware of their own strength or appear resistant to pain.

It should be noted that just because someone is hypersensitive to light does not mean they are hypersensitive to everything else – this is how symptoms can become particularly unique to each person, so try to keep track of how the senses affect your character.

Other symptoms of autism include ‘stimming’, such as flapping and rocking, but it should be noted that those with ‘less severe’ autism may not present this or may only present this when particularly distressed – what level this is will be entirely independent on your character and this needs to remain consistent.

Other physical issues for those with autism can include how some children walk on their tip-toes and as such their ham-strings don’t stretch and if they wish to walk flat-footed, they may require surgery (or never outgrow this habit). It is also very common for those with autism to suffer with intestinal issues due to constant anxiety – either from muddled routines or fear of others, confusion from school etc. – and they tense their stomach muscles until it becomes painful. They may not be able to articulate this pain, depending on whether your character is verbal or not, and how long this persists could cause issues later on or require medical intervention to ease the pain.

Hyper-focusing was mentioned before and this is an intense focus often on a particular interest. Common interests includes locomotion, astronomy and mathematics, but can spread onto pretty much anything including specific points of history, video games, Japanese animation and even people. Some have only one interest at a time, others have many and can often hop between them at seemingly random intervals, but it may either have a pattern or a trigger. Nothing a person with autism does is at random or for no reason.

Some people with autism don’t talk, or cannot. Selective mutism is common even among those with ‘higher functioning’ for various reasons. Sometimes this is due to internal or external stressors such as pain or anxiety. If your character is a mute, it should be noted that people are adaptive, with autism or not, such as learning sign language or using picture cards (PECs) to help them communicate their wants and needs. It could be an interesting way to develop character and, as always, it is important to remain consistent.

For a more comprehensive list of signs and symptoms of autism it is well worth a look at the National Autistic Society’s website (www.autism.org.uk). They also feature real people’s stories with their own autism and are approachable for anyone who has any questions on the subject.

It may well be worth noting the age of the character or the time the story is set will have an effect on your character. Thirty years ago people were far less aware of autism and this effected their treatment of others, often in less tolerant ways. In 1967, Bruno Bettleheim published a book called The Empty Fortress in which he detailed how autism is caused by the mother’s own hatred for their children – which has been widely discredited since – but in some countries this belief has stuck. As a result, mothers were labelled as abusive and were refused help, and this caused further isolation.

An old term for ‘higher functioning’ autism was Asperger’s Syndrome, but it should be noted that this diagnosis is no longer given. People who were diagnosed before this change may still refer to themselves as having AS, as opposed to the new term: autism without intellectual disability, or Aspies (though some dislike being called Aspie). There are cases of people as old as 80 being diagnosed, and all this will contribute to your character’s self-identity, particularly one that is more aware of the world around them and labels. Some can be deeply troubled and feel like their whole life has been flipped by this news, while others may feel like the label has, in fact, filled a void or helped with understanding things they didn’t understand before.

On the National Autism Website it is noted that as few as 16% of Britons with autism are employed. This may be due to social issues and anxieties, or due to difficulties processing the demands of jobs and, as more pressure is added, the more one struggles to process. It may be due to not being taught skills, as much like imagination, it is widely believed that one with autism cannot learn specific life skills and are never taught. While some may not ever develop the skills to get and keep a job, it shouldn’t be assumed that one does not have the potential. Some do manage to find suitable jobs and thrive in their environments, while others are left to believe they simply cannot; this being another tragedy of autism.

Most people’s views of autism are shaped by the media, and therefore it should be made note that autism presented in television shows and movies is often criticised for its one-dimensional approach to the condition. People on either side of the scale are often portrayed as super-geniuses with zero tact, no warmth for others and no interest in others; however this is often far from the truth. As previously stated, IQ is variable. While those on the spectrum may have a specific interest that they can recite from heart, they may not be savant level in talent for it. Not everyone with autism is adept at physics, for example, nor do they all have an interest in it. Some children may dictate the periodic table of element, in order, but they may not necessarily know what it means or the importance of the atomic mass numbers. They may be able to recall a book on space they’ve read, but if the information is presented differently to them it may confuse them. Some may grow to be mathematicians, but others may need support to count money for sweets at the shop for the rest of their lives.

Speech can vary from individual to individual. While some are reported as having speech patterns that are quite monotone, there are those – such as many females with autism – that learn to mimic others in order to fit in better. This mimicry, again, takes energy that NTs do not waste, as does remembering to facially react or to gesticulate when talking (others do this quite naturally). Speech patterns do vary, however, but how well one has learnt variances in voice can dictate a lot in your character’s story. For example, your character may emote quite well, or with a little eccentricity.

People with autism often take things literally, but most can be taught how to spot sarcasm (if the exaggerated tone is made, it helps). And some, with their sense of humour, can learn to be sarcastic themselves – which can throw others around them. They can be playful and enjoy creative play and make believe, or they can be quiet and prefer reading. Or they can be a mix of the two, like everyone else. It is important to try to not throw your character into a specific box. Like different days affect our mood, it should affect your character too.

In regards to tact, people with autism are renowned for this, and as such are described as being cold as a result. It should be noted that if one with autism sees something that does not make sense to them, they will say it. Some may have learnt not to talk through attentive parenting or through bullying at school, but to those they are closest to they may just outright state how they feel about a situation.

Consider this when writing your character, as autism is not sociopathy. Empathy is not completely cut off to them, and those close to them they do, in fact care about. To those in the ‘lower functioning’ end of the spectrum, they may not understand what is being said, but that doesn’t necessarily mean they don’t care. For example, a carer/parent/guardian of a person with ‘low functioning’ autism may have a relative that passes away, as the person with autism may not necessarily understand the impact this has, and they may not be aware that their carer/parent/guardian needs comfort – they might never be taught about death or how to express sympathy because, as stated before, they may never be taught to, as it is assumed they cannot learn it.

The assumed coldness is something that is often overlooked, as it should be noted that many people with autism grow up to become classed as ‘vulnerable adults’. This could be due to any number of factors and their care can be tailored to suit their needs. Some are considered ‘too friendly’, and will approach anyone as though they are a friend, and they may be at risk of being abused financially by ‘friends’ and relatives. They may not know how to say ‘no’ when asked for money and give it out of fear or not understanding that they won’t see that money again.

For those who are not independent, they can be at the mercy of those who support them. They can develop strong bonds or they can be at risk of institutionalised abuse – for a case reference one can look at Winterbourne View in which BBC Panorama uncovered a harrowing case of abuse for the tenants with various learning disabilities and autism. Eleven employees were sentenced for serious abuse. It should be noted that those with autism, when they feel safe, often exhibit less ‘behaviours’. They are less likely to feel anxious, like you or I, when they are with those they feel safest with. Anxiety can act as a stimulus, and the temperaments of those around them, your other characters, can affect how your character behaves.

Children with autism are prone to wandering and as a result are at risk of walking into roads, as they often take longer to learn road safety skills (if at all), or fall into ponds and drown. Adults, while trusted and believed to be able to go out on their own, may have lapses in attention or judgement and accidentally walk the wrong way home, get on the wrong bus or train and become lost. Once in a panic, previously unseen coping mechanisms may occur and it can develop into a traumatic situation for them. Whether your character has experienced any of this should reflect in their personality, their fears and/or the fears of their friends and family.

In conclusion, writing a character with autism has a lot of variables that may or may not come naturally for a writer to think about. The frequent one-dimensional portrayals of autism in media have put an extra level of pressure on writers to create accurate or believable characters with autism. There is a demand for it from those on the spectrum and their friends and families. However, once created and developed, it can be a very rewarding experience for writers. You may not even overtly state that your character has autism, but it is still just as important to nail the representation. This is why some readers and viewers can become off-put by what they consider misrepresentation. For example, BBC’s Sherlock’s titular character has an on-going debate as to whether he is on the spectrum, but while some viewers are excited to have a character with autism on screen, others point out that he fits far too many negative stereotypes of autism, from the arrogant tactlessness to super-intelligence. The same can be said for ABC’s Big Bang Theory, in which Sheldon Cooper exhibits the same traits just in a more comical fashion.

Address the first part: the character is a person. Create their personality first, what they like and dislike and who their favourite parent is, for example, and then develop how their sensory issues affect them, such as are they hyper or hyposensitive to which sense. As you write your character, allow them to decide what part of the spectrum they sit, and don’t allow their autism to define their whole personality. They, as people, should not be defined by this condition and respecting that will help you flesh out your character better. Your character may refer to themselves as being autistic, but try not to do it yourself.

Once the part of the spectrum is located, decide whether they are verbal or not, their age, their ethnicity and background, whether they live independently or not. From there the rest should fall into place.

Sometimes she writes. Sometimes she doesn’t. Either way, she’s not doing what she’s supposed to be doing.

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