We’re coming to the end of Autism Awareness Month, which has slipped by rather silently – the usual barrage of posters in schools, libraries, shopping centres and swimming pools could of course not happen this year. I often think that, as disorders go, this must surely be one that requires the least awareness raising. After all, autism is a word everyone recognises, and I would like to think understands, considering its prevalence – but I continue to be baffled by how little most people really know. For too many, autism is still a little kid banging their head on the floor, or Rain Man.
Because of this misconception, ‘Oh, you don’t seem autistic’ is a phrase heard far too often by those on the spectrum when ‘coming out’ to their friends and peers. This may sound well-meaning to those holding an image of autism as socially incapable, dumb, or underdeveloped – but it can be deeply invalidating to someone who tries so hard every day to appear so-called ‘normal’ and has finally plucked up the courage to say so. Not forgetting, it suggests that to drop the shield and show off autism is something undesirable.
Let’s sort this out. Let’s talk about autism.
A neurological disorder is one that alters the functionality of part of the nervous system – this could be the brain, the spinal cord, or the peripheral nerves that project all around your body to coordinate actions. These alterations result from physical changes in the nervous system hardware – maybe a protein doesn’t function correctly, or electrical signals between two regions have been blocked, or even a new link between brain areas has formed. As the nervous system relies on a massive coordinated effort both within cells and across the body, a seemingly tiny change – for example one protein in one type of cell changing shape – can have widespread effects on many behaviours.
This is what makes neurological disorders infamously difficult to research. Thanks to the interconnectedness of the neural system, it is rarely as simple as one pathway no longer functioning, so finding a treatment or cure for any neurological condition is difficult because there are just too many changes to target. Furthermore, tampering with anything may have negative off-target effects because the cells of the nervous system are all players in many different processes – not just the one related to the disorder.
New work is constantly being published on the mechanisms of autism. It seems to be a particularly complex disorder, with no single cause becoming apparent despite decades of work – countless abnormalities, from genetic differences to protein function to network activity, have been associated with autism. This is why autism is a spectrum. Individuals with ASD diagnoses have different combinations of these neural abnormalities, and as a result all have slightly different ‘versions’ or ‘presentations’ of autism. To complicate things even further, gender greatly impacts on the autism phenotype with boys and girls typically displaying a distinct set of characteristics. This is something that has only come to light in recent years and partly explains why so many more boys are diagnosed than girls. With diagnostic criteria being based on male autism, thanks to a history of boys-only autism research, girls with the disorder easily slip through the net.
Further decreasing the chance of girls being diagnosed with autism is ‘masking’. This is a technique used to cover up autistic behaviours whilst around others. It is an incredible feat of learning and memory: by listening to conversations and watching others’ behaviour, scripts for social interaction can be saved and sorted into a Rulebook for Life. It is used to varying extents by all on the ‘high-functioning’ end of the spectrum, but typically girls are far more proficient in masking and use it more often. As well as camouflaging autistic girls, masking is the reason that autism is often regarded as a children’s disorder – save for those most severely affected, many adults with autism have learned how to effectively suppress their behaviours. This does not mean they are no longer autistic or find life easier – it means they have become experts at hiding it.
We have established that there is a huge amount of variation within autism – particularly now that conditions such as Asperger’s and Pervasive Developmental Disorder have all been brought under one diagnostic umbrella of ASD. Nonetheless, there are a few core principles. These are sensory issues, social and communicative difficulties, and repetitive behaviours. Basically, an autistic brain develops in a different way to a neurotypical brain and so it makes sense of the world in a different way. These core principles can exhibit themselves very differently between individuals, and even vary in severity from day to day in one person as their circumstances change.
Some of the most common manifestations of these core principles are hypersensitivity to sounds and light; trouble understanding how others are thinking and feeling; routine following; difficulty communicating feelings, wants or needs; and anxiety in unfamiliar or social situations. Some would argue that autism is not an innate disability but rather a challenge of trying to fit into a world built to accommodate neurotypical brains. Maybe this is easier to understand with an alternative example: deafness wouldn’t be disabling if the language most people spoke was BSL. Autism is disabling because most people think and react in a different way to those with ASD.
But, while deafness is something most of us are open to discussing, autism is not the same. It’s awkward. Sharing a diagnosis with employers, colleagues, even friends, can be uncomfortable on both parts. I think this stems from a few things. One, a decisively negative perception of autism persists. Saying you are autistic is like proclaiming you’re a ‘weirdo’, or ‘dumb’. Of course, those who understand autism know this is not the case, but the stereotype puts people off disclosing a diagnosis in fear of being treated differently. Being treated differently after ‘coming out’ is ridiculous considering the person is the same one they were before, but often others start overthinking their own behaviour around them or second-guessing their abilities. Secondly, for those on the spectrum who generally seem ‘normal’, breaking the status-quo by revealing a diagnosis is scary, and can be awkward when met with disbelief. It can seem easier to keep quiet and struggle along in secret to avoid the confrontation at all. Finally, talking about a diagnosis and its implications is an innate challenge for those on the spectrum regardless of society’s openness on the subject because, as discussed, one of the key principles of autism is communicative difficulties. It is extremely hard for those with autism to identify and explain how they feel. Untangling the roots of difficulties and sensitivities to explain them to others is complicated, and when on the spot it can be especially hard to think of specific examples, making the confidante think there is no real issue at all.
And yes: the challenges of autism are uncontrollable symptoms of a neurological condition, not rudeness or a lack of social experience. To make this clear, here’s some science.
Those with autism may find it difficult to stay focussed on a conversation. This is not due to a lack of interest or respect, but whereas a neurotypical brain has circuitry designed to filter out background noises and focus in on one sound, the autistic brain attempts to devote equal attention to all sensory input – not just the voice of the person sitting in front of them, but also the waiter taking an order across the room, the bell jingling as someone walks in, a car revving outside, cutlery scraping on plates – endless, distracting sound. I’m sure you can imagine how overwhelming this can get, and how much energy must be put into simply holding it together in a seemingly ordinary setting.
When you hear the word ‘empathy’ associated with autism, this is in reference to its psychological definition – an ability to perceive things from another’s points of view – rather than the popularised definition of caring how another feels. Being unable to understand why someone feels a certain way is not the same as being indifferent to their feelings, but sadly this is the take-away many people have. People with autism do not lack emotion but do often have trouble identifying emotions in themselves and others. Not being able to work out how you feel beyond perhaps ‘positive’ or ‘negative’ can be frustrating and overwhelming. Struggling to identify others’ emotions can mean missing important social signals – I’m sure you can imagine the implications of this, from continuing with a conversation the other person wants to end, or not realising that a friend is in need of support. Emotion and empathy are complex neural processes, so of course many neural differences have been associated with this aspect of autism. Many genes involved in neural development and connectivity are abnormal in those with autism. The result of this is a more disconnected brain – information from distant brain regions cannot be integrated as fast as usual. This theory makes sense for many aspects of autism – many of the skills that require widespread brain activity are those that are often impaired in autism, like language and social cognition which, of course, includes empathy. There are countless studies on the details of this, and it is these alterations to the brain network, among other things, that are at play – not rudeness or heartlessness.
Another example is fussiness. An apparent pickiness about what to eat or wear, or an ‘overreaction’ to having these things forced upon them, is another example of the sensory aspect of autism. Tactile hypersensitivity is very common; this means an abnormal emotional response to touch. This could be a certain food texture, the feel of a certain material on the skin, or close contact with others. As with sound, the basis of this is in an increased detection and discrimination of sensory inputs – rather than things blurring into a background fuzz, every detail of the sensory environment is crisp in the mind. This can render something unnoticeable for most, like a ridge of embroidery brushing on the skin, unbearable.
Lastly, stimming – a repetitive action such as flapping hands or repeating a phrase – is an instinctive behaviour used as a focus to block out distressing stimuli. But to someone unaware it may be wrongly interpreted as disruptive, a deliberate attempt to annoy others, or simply attention-seeking. This kind of physical portrayal of autism can be uncomfortable to watch as an outsider, as it is not something most can relate to and you may feel at a loss of how to help. In this situation focus on the cause not the behaviour. This means removing the environmental stressors that are causing an information overload rather than trying to stop the stimming – moving to a quieter or less busy place, for example.
One article is not enough to delve into all the facets of autism and their explanations, but the point is, these challenges are unavoidable. There is not a lack of parenting, bad attitude, or disregard for others underlying these behaviours.
Statistics would suggest that you know someone with autism – if you think you don’t, they just haven’t told you. Autism is so much more than most people imagine – by that I mean there are many more aspects to it beyond the classic ‘doesn’t like loud noises and people’, and that those with autism are capable of much more than you may first assume when hearing the word. Some forward-thinking companies are starting to recognise that with some very simple supports in place, those with autism make outstanding employees – I mean, logic, problem-solving, reliability, what’s not to like? These are all traits of autism. It has its challenges, but it can also have its perks.
Whereas wheelchairs and blindness are commonly accommodated for, invisible disabilities can be tricky. But the first step in improving this is to build a base of understanding and openness, so that people can comfortably talk about the support they need without a worry of being undervalued as a result. This goes for both ends of the ASD spectrum, and everything in between. The adults who never learned how to talk should not be scoffed at. The children screaming on the shop floor should not be tutted at. Equally, those on the ‘high-functioning’ end of the spectrum should not be dismissed when sharing a diagnosis that doesn’t fit the common perception, and should not be made to feel embarrassed when they need to leave the party early, or cover their ears when an ambulance goes by.
We are coming into an age where diversity is something to be celebrated. Neurodiversity should be too.
Written by Ailie McWhinnie and edited by Tara Gamble.