“I still exist in a work environment where I’m forced to mask because to expect accommodations would still be seen as asking too much in a world where most people know next to nothing on my neurotype. (…) I have accepted I may never have lasting friendships or know how to maintain them.”
Strong Female Character by the Scottish comedian Fern Brady is a moving exploration of life with undiagnosed autism. Fern Brady shares her own experience of living as an autistic individual in the society where still there is a lot of stigma and bias towards people who are “wired differently”. It was not until her mid-30s until she received her diagnosis of Autistic Spectrum Disorder (ASD), twenty years after she told a doctor she had autism.
“For most autistics existing in a world not built for them, anxiety is the baseline and constant background hum that their daily life has to play over.”
Initially misdiagnosed with OCD and depression by her GP, Fern was a top student accepted to Edinburgh University to study Arabic and Persian, but struggled with sensory overload, the disruption to routine and behaving in a way that was deemed socially acceptable.
She shares her own experience of autistic meltdowns, shutdowns, relationships, attempt to navigate social situations, scripting in order to get through social events, stimming, distress at change, difficulty with small talk and eye contact, social camouflaging and masking so prevalent among autistic women, need for routine as one of the only calming and regulating forces in an autistic life.
Strong Female Character also constitutes criticism of misconceptions about autism, especially about autism in women as well as repetition of mindless slogans such as “it is ok to not to be okay” even though there is a very little understanding in social circles for people struggling with mental health challenges and living with neurodivergent conditions.
Fern notes that the public perception of autistic people is still heavily based on the stereotype of men who love trains or science which historically led to many women missing out on diagnosis. It is only now that increasing numbers of health professionals understand to look for intensity of interest rather than unusual interests when assessing girls and women. Also, she points out the difficulty in accessing the diagnosis in UK for many people, especially women.
Fern’s account of life as an autistic person is told with sensitivity, compassion, and deadpan humour. Her books has a very personal dimension for me and I am really happy to see more attempts to raise awareness on autism.
I highly recommend this book to those who wish to learn more from the first-hand account on living as an autistic woman.
It is important to note that the understanding of autism has significantly changed over the last forty years. Up to the 1980s the initial diagnosis of autism was based on very narrow criteria but over the last few decades this has changed and evolved from the narrowly defined to broadly defined concept of autism as well as autism has become a common rather than a rare condition. However, the number of people who are autistics has not changed. What changed is the fact that more people are being diagnosed due to more awareness and better understanding of autism among medical professionals. The medical world is currently catching up on people who have been historically missed when it comes to diagnosis. In the UK women over 40 years old are the group of people that is the most diagnosed with autism these days. Around 10 years ago the average age at which women were diagnosed was 44 years, nowadays depending on the research the average age for women being diagnosed is between 31 to 33 years (in the UK) whereas for men / boys the average age at which they are being diagnosed is between 4 and 8 years old.
While speaking about autism we must mention the concept of neurodiversity. Neurodiversity refers to the different ways the brain can work and interpret information. It highlights that people naturally think about things differently. We have different interests and motivations and are naturally better at some things and poorer at others. Most people are neurotypical, meaning that the brain functions and processes information in the way society expects. However, it is estimated that around one in seven people (more than 15 per cent of people in the UK) are neurodivergent, meaning that the brain functions, learns and processes information differently.
Neurodiversity is the concept that there are many kinds of human brains. Thus, “neuro” for brain and “diversity” for difference and variation. When we talk about neurodiversity, we are celebrating the variety and differences in all human brains. Neurodiversity includes a range of conditions including ASD (autistic spectrum disorder), ADHD, Attention Deficit Disorders, Dyslexia, Dyscalculia, Dyspraxia, Epilepsy, Tourette and Tic Disorder, Foetal Alcohol Spectrum Disorder, and Dyspraxia and other neurological disorders.
Going back to ASD, when speaking of ASD, ASC – Autistic Spectrum Condition is a term increasingly used by professionals in the UK diagnosing autism to replace the word disorder in the diagnostic label AS (autistic spectrum) with the word ‘condition’. This is to move away from seeing autism as a disorder and towards seeing it as a natural part of human neurodiversity.
There is no such a thing as a “typical autistic person”. There is no “one size fits all” approach, nor any description of an autistic person that will be true for all autistic individuals. Autism is from birth to death. Being autistic is an intrinsic to the individual and not something “additional” to the person.
The heterogeneity of the autistic population is such that there will be differences from one individual to the next and what is of huge relevance to one party may have no meaning whatsoever to another. What may work well for one individual could be a disaster for another. It is crucial to have a level of thought when engaging with autistic adults so to ensure that you do not unwittingly engage in bad practice. It is important to be thoughtful and not to discriminate people who exhibit different social skills compared to the ones that are deemed as ‘standard” keeping in mind the current suicidality levels among autistic people.
Suicidality and Autism
Autistic people are at a higher risk of suicide than non-autistic people. According to Autistica autistic people are nine times more likely to die by suicide. Figures show that as many as 11-66% (11% is for people with ASD level 3 and 66% for people with ASD level 1) of autistic adults had thought about suicide during their lifetime, and up to 35% had planned or attempted suicide. Autistic people are also more at risk of dying by suicide than non-autistic people, with the highest risk seen in autistic people without co-occurring intellectual disability, and autistic women.
As per The Lancet, women with autism without learning disability are most at risk of dying by suicide. By contrast, most suicides in the UK general population are in men. Hence, suicide prevention strategies used in the general population might not be appropriate for people with autism.
‘Autism is a lifelong developmental disability which affects how people communicate and interact with the world’ – this is definition that is used by the National Autistic Society (NAS) in UK. However, there are many debates among medical professionals and autistic people if the word ‘disability’ should be still in use when it comes to autism. This will be discussed in more detail later.
More than 1 in 100 people are on the spectrum in UK as per the NAS. However, as the understanding of autism is improving among the medical professionals some estimates quote more than 1 in 30 people are likely to be on the spectrum in the UK.
Autism is a spectrum disorder which means autistic people can have varying support needs. One third of autistic people also have a learning disability. The autism spectrum isn’t linear, and many people talk about the ‘spikey profile.’ This means an autistic person could be a leading expert on nuclear physics but unable to remember to brush their teeth.
The current DSM-5 which sets so called diagnostic criteria suggest that autism should be graded in relation to the levels of support the individual requires. But even this might be too simplistic and might change with the publication of DSM-6. Some autistic people will have high support needs, which may mean that they require full time care and support. Some people may need a bit of support with day-to-day activities, while others live fully independent lives. To reflect these different levels of support needs, the autistic individual currently receives the diagnosis with ASD level 1,2,3… where level 1 indicates lower-level support needs and level 3 indicates higher support needs.
What might be required in terms of support for an individual in one environment will differ often considerably from what may be required in another. Some people may not need any support at all in many environments but need extremely high levels of support in a minority of situations. Some might go for years without the need for support but experience periods of weeks during which support is required. The person is equally autistic in any of these scenarios, but the impact of the autism will differ from one environment to the next. The concept of severity could and should be applied in context. This is entirely based on the following principle: Autism + Environment = Outcome. It is the combination of the autistic person and environment in which the autistic person finds themselves that determines sort of impact and outcome they will experience. Outcomes for autistic people will be hugely dependent on the environments we expose them to.
Women / Girls and Autism
Autistic women and girls have often been overlooked or misdiagnosed due to outdated stereotypes about autism. Historically, it was wrongly assumed that autism primarily affected men and boys, with women and girls rarely being considered. However, this understanding is changing. More women and girls are now discovering that they are autistic, challenging these stereotypes. Despite progress, barriers to diagnosis and support remain. Autistic characteristics in women and girls may differ from those in men and boys. For instance, women and girls may exhibit fewer obvious social difficulties, but this could be because they tend to “mask” their autistic traits, leading to anxiety and overwhelm. Additionally, some core characteristics of autism, such as repetitive behaviours and intense interests, may manifest differently in women and girls, making diagnosis more challenging. Healthcare professionals sometimes lack awareness of these gender-specific differences, leading to misdiagnoses or overlooking autistic traits in women and girls. As mentioned earlier it is important to note that currently the group that receives the highest number of diagnoses in the UK are women over 40.
Some Common Characteristics of Autism (as mentioned on the National Autistic Society – NAS website)
Autism is a spectrum condition and affects people in different ways. Like all people, autistic people have their own strengths and weaknesses. Below is a list of difficulties autistic people may share (as per the NAS) – it is important to remember this list is no exclusive and the diagnosis require a thorough assessment by the right specialist with experience in assessing autism.
Social Communication and Social Interactions
Autistic people have difficulties with interpreting both verbal and non-verbal language like gestures or tone of voice. Some autistic people are unable to speak or have limited speech while other autistic people have very good language skills but struggle to understand sarcasm or tone of voice.
Autistic people often have difficulty ‘reading’ other people – recognizing or understanding others’ feelings and intentions – and expressing their own emotions. This can make it very hard to navigate the social world.
Repetitive and Restrictive Behaviour
With its unwritten rules, the world can seem a very unpredictable and confusing place to autistic people. This is why they often prefer to have routines so that they know what is going to happen. Autistic people may also repeat movements (also called STIMMING) such as hand flapping, rocking or the repetitive use of an object such as twirling a pen or opening and closing a door or lining objects up or doodling etc. Autistic people often engage in these behaviours to help calm themselves when they are stressed or anxious, but many autistic people do it because they find it enjoyable. Change to routine can also be very distressing for autistic people and make them very anxious. It could be having to adjust to big events like Christmas period, facing uncertainty at work or in school, or something simpler like a bus detour that can trigger their anxiety.
Over- and Under- Sensitivity to Light, Sound, Taste or Touch
Autistic people may experience over- or under-sensitivity to sounds, touch, tastes, smells, light, colours, temperatures or pain. For example, they may find certain background sounds like music in a restaurant, which other people ignore or block out, unbearably loud or distracting. This can cause anxiety or even physical pain. Many autistic people prefer not to hug due to discomfort, which can be misinterpreted as being cold and aloof. Many autistic people avoid everyday situations because of their sensitivity issues. Schools, workplaces and shopping centres can be particularly overwhelming and cause sensory overload.
Highly Focused Interests or Hobbies
Many autistic people have intense and highly focused interests, often from a fairly young age. These can change over time or be lifelong. Autistic people can become experts in their special interests and often like to share their knowledge and perform so called “INFODUMPING”. Like all people, autistic people gain huge amounts of pleasure from pursuing their interests and see them as fundamental to their well-being and happiness. Focusing on their special interest might help with decreasing anxiety. Being highly focused helps many autistic people do well academically and in the workplace but they can also become so engrossed in particular topics or activities that they neglect other aspects of their lives.
Extreme Anxiety
Anxiety is a real difficulty for many autistic adults, particularly in social situations or when facing change. It can affect a person psychologically and physically and impact quality of life for autistic people and their families.
Meltdowns and Shutdowns
When everything becomes too much for an autistic person, they can go into meltdown or shutdown. These are very intense and exhausting experiences. They are NOT a choice.
A meltdown happens when someone becomes completely overwhelmed by their current situation. It is important to remember that an autistic meltdown is NOT a tantrum. Meltdown usually occurs due to a build up of triggers such as a change in routine, sensory overload, demands or thinking about multiple scenarios and problems related to one problem one is faced with. Early signs of autistic meltdown include heightened senses, not being able to speak or communicate, stuttering, not being able to process information, an urge to escape resulting in a long recovery time.
A shutdown appears less intense to the outside world but can be equally debilitating. Shutdowns are also a response to being overwhelmed but may appear more passive – when going quiet or ‘switching off’. Early signs of autistic shutdowns include losing the ability to mask autistic traits, not wanting to be touched, less patience than usual, an urge to isolate from others, difficulty regulating emotions, feeling easily exhausted, increased stimming, difficulty communicating, processing becomes slower, racing thoughts, dissociation, crying, shaking, heart racing, blank expression on face.
Ever Changing Definition of Autism
The definition of autism has changed over the decades and could change in future years as we understand more. Some people feel the spectrum is too broad, arguing an autistic person with 24/7 support needs cannot be compared with a person who finds supermarket lights too bright. We often find that autistic people and their families with different support needs share many of the same challenges, whether that’s not getting enough support from mental health, education and social care services or being misunderstood by people close to them.
There is much debate over whether “person with autism” is problematic in relation to “autistic person”. This is related to the whole “person first” language debate. The basis of the argument is that “autistic person” suggests that autism is an intrinsic aspect of a persona, but the person with autism implies that the person is an individual first and that the autism is somehow secondary, or an add-on which clearly is not the case. Ultimately for many autistic individuals including myself this comes down to individual preferences. It is important to remember that autism is an intrinsic aspect of a persona. In terms of which phrase to use on an individual level it is perfectly appropriate to simply ask the individual which term they prefer.
The impact of being autistic can and does change quite dramatically dependent in the environment (it does not mean that person’s autism will change – just the impact). The impact of autism can be considerably influenced by how the individual is supported.
When using term, a person with highly functioning autism, we must be aware of the ambiguity and inaccuracy of this term. Most individuals who used to be described as highly functioning might intellectually function at a high level in demographic terms, but it does not mean that the individual does not require support. In many cases individuals with highly functioning autism might require a very high level of support to function on a day to day basis. The plethora of terms used to refer to people with autism might seem confusing. In many textbooks the term autism is used to cover all individuals who are autistic. The problem is that for many people the term autism has negative connotations and leads to all fallacious assumptions.
There is much of debate whether autism should be viewed as a disability, a difference or something that can be seen just as a disadvantage in certain circumstances.There is a so – called the medical model of autism meaning that being autistic means that there is something wrong with the autistic person or there are some impairments that need “fixing”. Medical model identifies autism as a deficit – something to be fixed or changed for better. While it is true that autism can cause lifelong serious problems for some individuals and their families, it is not accurate to suggest that all autistic individuals can or should be viewed according to a medical model. There is also the social model of autism which implies that any problem that an autistic person might have is rooted in the environment and that changes and adaptions within society / environment will reduce or eliminate the negative issues faced by the individual.
It is important to emphasize again that autism is different for each autistic person while there are some common characteristics as mentioned above under Some Common Characteristics of Autism (as per the NAS) Those common characteristics are cognitive in nature and are combined with hyper and / or hypo sensory processing and will affect the way in which information is processed. The diagnostic criteria for autism within the main diagnostic manuals are based on a medical model and terms such as disorder and impairment are commonly used. It is important to mention that there are autistic individuals who do not perceive themselves as disordered or impaired or disabled. One thing is clear that all the autistic individuals are at distinct disadvantage as a result of being autistic within a society that does not understand them and discriminate them on a daily basis, especially in social settings. Understanding is not enough, acceptance or rather normalisation of autistic people is the way forward.
If we as a society were to understand and then accept without question the non-threatening behaviours that some autistic people need to engage in to feel comfortable, life would improve dramatically overnight. It is hard to understand why the society would not simply accept different, non-offensive behaviour if it makes little to no difference to the neurotypical person and yet has a massive impact on autistic individuals. As long as neurotypicals can accept the autistic perspective, the understanding is less relevant.
Other Important Things to Remember
Autistic people are more susceptible to being traumatised by events which neurotypicals might not necessarily find traumatic. Just because something is “everyday” and “mundane” for a non-autistic person it does not mean it will be equally simple and mundane for an autistic person. A research study found that over 60% of autistics showed probable PTSD at some point in their lifetime compared to 4.5% of the general population. Social incidents also appear more likely to cause PTSD in the autistic population. A study found that among autistic people social incidents or situations were more likely to cause PTSD than war, natural disaster. In neurotypical this was the opposite.
Autistic people need predictability. A sudden change of plan or in their routine might lead to meltdown / shutdown or extremely debilitating autistic burnout.
In UK as well as many other Western countries post-diagnosis support is almost non-existent for people with ASD level 1.
NHS leaves it to the individual to decide if it is safe for them to inform their employer and family or friends that they are autistic. The reason why people should not let people around them know is related to stigma and misconceptions around autism among public as well as many medical professionals not specialising in autism.
An autistic person might not realise you want them to do something unless you explicitly ask. This is not due to rudeness or laziness but difference in social communication.
Most autistic people prefer written communication over verbal communication which is related to a slow processing speed. Also written communication gives a person more processing time and it reduces the sensory input. Written communication can allow the autistic people to unmask more and it does not rely on interpreting facial expressions or body language.
Autistic people often ask many questions or the same question over and over. It is the way of reassuring oneself as we know we are getting the same answer. It provides predictability especially during the chaotic times. The way certain words sound might feel regulating to hear. Autistic person might not have processed the answer given to the question the first time so we ask again to give ourselves more time to think. It might be also to seek clarity and prevent us from misunderstanding as many autistic people have previous experiences of communication misunderstandings or we just want more information.
Autistic people should not be held to narrow and superficial neurotypical standards. For example neurotypicals should find totally acceptable a person wearing sunglasses during winter and headphones without any desire to engage in any conversation with them – this would be a good first step for neurotypicals toward tolerance.
Many autistic people especially with ASD level 1 will not fit into outdated concepts and stereotypes of what an autistic person should be like.
Many austisitc people love focusing on small details.
Austistic people may have a service dog which can provide deep pressure during stressful times, interrupt self injurious stims, create space between handler and other people and alerting to increasing cortisol levels.
Autistic people do not invariably lack empathy. Autism is not a state of being that stems from being non-emphatic. Plenty of autistics people are highly emphatic.
It is not true that autistic people lack social skills. Autistic people lack the intuitive ability to understand unwritten neurotypical social rules which is a more accurate statement. To suggest that an autistic person is impaired in social skills is simplistic – the interference is that the neurotypicals social way of being is superior to the autistic social way of being, and if the neurotypical social rules are not followed or understood then the autistic person is at fault. If we take a view that being autistic is like being part of a minority group, then by not understanding neurotypical social rules the autistic person can be at disadvantage, but it does not mean they are impaired.
One of the major problems when it comes to trying to define autism is that very often it is described in behavioural terms, for example: “people with autism do this”. This is simply not applicable across the whole autistic population. If there were such a thing as “autistic behaviour” then we would be able to identify autism simply by identifying that behaviour. There is no set of behaviours that is purely autistic either. There is no behaviour that an autistic person displays that isn’t displayed by the non-autistic population. There is no behaviour displayed by the neurotypical person that isn’t found in the autistic population. There are all sorts of behaviours that are commonly associated with autism and that some of those behaviours are seen in the majority of autistic people – but these are not behaviours exclusive to autistic people or universal to all autistic people.
Autistic traits are not personality failings.
I hope you will find this information useful especially if you have not had much exposure to ASD.
