Why neurodiversity is misunderstood and forgotten in our society.
In recent years, fortunately more and more attention has been paid to inclusiveness and diversity in our society. Discussions about why women earn less than men or why people of colour are underrepresented in higher education are becoming more frequent in the public debate. This attention is necessary to understand the often structural and deep-rooted causes of these phenomena and to be able to actually stop them with improved knowledge. Unfortunately, one group of people is often completely forgotten about in the diversity debate: neurodiverse people.
For this reason, 2nd April has been named World Autism Awareness Day by the United Nations. This day has been ‘celebrated’ every year since 2008 and is a day ‘to highlight the need to help improve the quality of life of people with autism,’ according to the official UN site. The purpose of declaring such a day is to improve the knowledge and understanding of the various forms of autism – nowadays better known as Autism Spectrum Disorder (ASD). ASD is the term that now covers all subtypes of autism, for example Asperger’s and PDD-NOS.
This article will explore what the term neurodiversity entails and why it is such a blind spot in terms of creating a more inclusive society. For example, discussions are often held ‘about neurodiversity’ instead of ‘with people who are neurodiverse’. So we, Esmee and Linda, are also publishing an article on autism, neurodiversity and inclusion on World Autism Awareness Day to draw attention to the stereotypes that still influence the image of neurodiversity. And yes, we are both neurotypical. So why are we doing this? We both have one or more family members with autism and have personally experienced the impact that neurodiversity can have on a person, both positively and negatively.
However, it is otherwise not our place to talk about the experiences of others, apart from bringing information about neurodiversity together and explaining it here for the Shaping Europe reader. We prefer to let neurodiverse people talk about their own experiences, their difficulties and wisdoms. That is why this article has a second part in which different people will share their stories about how neurodiversity affects their daily lives.
Neurodiversity: what are we talking about?
Before we can talk about how it is possible that society is often not inclusive enough for neurodiverse people, it is probably useful to explain what this term means. So let’s start at the beginning: what is neurodiversity? This is not an easy question to answer because no generally accepted definition of the word has been developed (yet), but in the broadest sense, neurodiversity can be described as a huge spectrum that can include people whose intellectual and sensory processing is different from the ‘dominant neurotype’. This predominant neurotype is called ‘neurotypical’ and it was for a long time seen as the norm that everyone should behave according to. Fortunately, we know better nowadays. Falling outside this norm makes you neurodiverse and how this manifests itself can differ strongly from person to person. The term neurodiversity was initially mainly used to describe people with Autism Spectrum Disorder (ASD) (approximately 1.7% of the population), but nowadays, the term also includes people with ADHD, dyslexia, dyscalculia, dyspraxia, dysnomia, high sensitivity, giftedness, Tourette’s syndrome, bipolarity, OCD and so on. When all these umbrella terms are grouped up together, about 30 to 40 percent of the population can be classified as neurodiverse.
The neurodiverse spectrum
Neurodiversity expresses itself differently per person; it is a spectrum. This means that everyone has a different experience and that it can also vary greatly in its characteristics and gradations. Nevertheless, there are general overarching aspects that most people with that particular label recognise themselves in. For example, information processing works differently for people with ASD: sensory stimuli such as light, taste, sound and temperature are processed differently. The filter most neurotypical people automatically have for these stimuli is largely absent among autistic people. This can sometimes lead to situations where so much information is coming in at once that it becomes too much to bear. This phenomenon is called overstimulation.
Anyone can experience overstimulation, including neurotypical people. Just think about how you would feel after spending a few hours at a children’s party with thirty screaming kids running around. But in the neurodiverse mind, the point of overstimulation is reached much quicker. Overstimulation manifests itself differently in everyone with ASD. Some people become withdrawn while others become panicked and someone else could lose the ability to express their feelings or even use words. Something that all these forms do have in common is that overstimulation is extremely exhausting and can have a huge impact on daily life. However, overstimulation is certainly not the only thing that people with ASD have to deal with; there is a whole range of characteristics that people with autism may or may not agree with, because it is a spectrum and everyone’s experience is different. That is why we refer you to the post below for more information on autistic traits.
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Another form of neurodiversity is dyscalculia. In people with dyscalculia, the left and right sides of the brain are not well connected, which means that things that are processed in the right hemisphere do not happen automatically. Dyscalculia is often described as dyslexia but with numbers, but it is much broader than that. Because the information processing of the right hemisphere does not run smoothly, people with dyscalculia have difficulty with aspects that take place there: arithmetic and spatial insight. This means that mathematics is extremely difficult, that telling the time can go wrong, giving directions is confusing, etc. These are all examples of situations in which a value must be assigned to a symbol (in this case, numbers) and this process is flawed. It is estimated that between 2 and 4 % of the population has dyscalculia.
What all forms of neurodiversity have in common is that they are congenital variations in the brain which in one way or another deviate from the neurotypical variant that is seen as the standard in our society. So there is a whole range of different neurotypes and yet our society is organised according to the demands and wishes of only one neurotype: the neurotypical standard. For example, every child must be able to read and calculate at the same level, most people work a forty-hour week from 9 to 5 and one must be able to function in a room with, for example, people talking or music playing in the background without being disturbed by it.
There are plenty of neurodiverse people who (with the necessary adaptations) can easily function in this society. But there are also plenty of people who, for whatever reason, are hindered in their daily lives because they are neurodiverse. This is something that to this day has received virtually no attention.
Neurodiversity and inclusion: where does it go wrong?
A more inclusive society for neurodiverse people is hampered by several reasons. First, knowledge about neurodiversity is in its infancy and even among professionals there is still a lot of misinformation about what it means to be, for example, autistic. For a long time, neurodiversity was seen as a disorder; something that was wrong with someone and needed to be ‘fixed’. For most of the 20th century, children with an autism diagnosis had to undergo behavioural therapies in which they were taught how to behave neurotypically; an obscure practice that did more harm than good. The treatment of neurodiversity was also long focused on how neurotypical people were ‘bothered’ by the behaviour of neurodiverse people and how this could be solved. Neurodiverse people had to adapt to appear as neurotypical as possible, often at the expense of their own (mental) health.
This view has been challenged over the past few years and we now know that people with ADHD, dyslexia, autism and so on do not have a disorder, but have innate characteristics that arise from different variations of the human brain. Also, being neurotypical is only one of those many variations, but because this variation contains the majority of people, it has become the dominant group and therefore the norm. Society is a metaphorical box of blocks and we try to fit the square, the triangle, the star and the circle all through the same hole. Neurodiversity is not a disorder, but because it can have so much impact on different areas of life, it is, in principle, a disability. A neurotypical person usually does not even notice that there is music playing in the supermarket. However, this can be the reason for someone with autism to avoid the supermarket as much as possible (because it can lead to overstimulation). The star has to live in a world that is completely adapted to the triangle. Moreover, the triangle often does not realise that there are other shapes walking around as well.
Due to the often lacking knowledge surrounding neurodiversity, a stereotypical image of how ‘this kind of people’ look and behave has also been created in the media. As mentioned earlier, neurodiversity is a spectrum and is different for everyone, but there is often only one form represented in the media, which has strongly influenced people’s perception of neurodiversity. Think for example of Sheldon Cooper from the popular series The Big Bang Theory. When autism appears in films or series, it is often in the form of socially maladjusted men who do not take their surroundings into account, have poor communication skills and have built their personalities around hyperfixations. This stereotype is so strong that even people with autism do not recognise it in themselves, and therefore walk around without a diagnosis for a very long time or even for the rest of their lives.
This also happened to Sandra (19) and Hana (27). Sandra was recently diagnosed with autism, after years of struggling with symptoms that, in retrospect, were related to autism, something she had never recognised in herself, partly because of this stereotype: ”I only knew autism from movies and TV series and I just didn’t recognise myself in them. On TV, people with autism have no empathy and I have a lot of empathy, which can be so overwhelming that my head gets completely stuck. In my experience, autistic people on TV come across as if they couldn’t take others into account. I can, so it couldn’t be autism.’’ Hana, too, only recently received her ADHD diagnosis, even though she sensed since childhood that something was not adding up. She never thought of ADHD because her characteristics did not match the image of ADHD that she had in her head: ‘’One time, I googled my symptoms out of frustration to find out why I had such a problem concentrating and the first thing that popped up was ADHD. I was so misguided in what ADHD is that I did not even believe that I could have it. The stereotypes were so deeply embedded in me that I never saw it as a viable option.’’
Neurodiversity and gender
Besides the fact that strong stereotypes surrounding neurodiversity sometimes make it difficult for neurodiverse people to recognise themselves within the spectrum, gender is also an important issue to address when talking about neurodiversity. It is no secret that many types of neurodiversity are discovered much earlier in men than in women (and we are only talking about the gender binary model in this case). You have just read about the situations of Sandra and Hana who were both diagnosed in their adult lives. An example that stands in complete contrast to this is that of Dinand (21). He was diagnosed with PDD-NOS (a subtype of autism that nowadays falls under ASD) as early as kindergarten, when his parents and teachers noticed that he was not developing in the same way as other children his age, i.e. according to the neurotypical norm. After testing and receiving the final diagnosis, he was then transferred to a special primary education institution where he eventually finished primary school. Dinand says the following about this transfer: “The classes were smaller and each child received a lot of individual attention, the guidance was more intensive than in a regular primary school.”
The fact that men receive neurodiverse diagnoses more often and more quickly than women is mainly due to two reasons. First, medical and psychological research on neurodiversity in the past has been limited exclusively to men. Women were simply not studied, so today we still know little about how neurodiversity manifests itself specifically in women (which can be very different from men). The other reason is more cultural in nature and has to do with the fact that male neurodiverse behaviour is more often interpreted as ‘disruptive’. Being ‘in your own world’ is a form of behaviour that many people with autism display. Whereas in girls, this can be seen as ‘quiet’ or ‘dreamy’, in boys, this is more often linked to something not being right. “My train of thought is a bit longer, I often have to think a bit longer about certain things, and I was often in my own little world as a child,” is what Dinand says about this.
Expressions of neurodiversity are therefore more often interpreted by women as something different or completely missed. Deviated behaviour in women is also less tolerated in our still patriarchal society. Because of this, women learn to hide and mask their neurodiverse behaviour sooner and quicker. They themselves may suffer a lot from the effects of this (suppressed neurodiversity can manifest itself, for example, in burn-outs or addictions, see the following article), but these will not be picked up by their environment as neurodiversity, which means that diagnoses in women are more rare.
An important side note to place is that neurodiversity is a spectrum and manifests itself differently in everyone. For example, there are many similarities in how autism manifests itself in women, but not all women can identify with them and vice versa. There is also a group of neurodiverse people who do not identify as either male or female. It is important to mention gender in this discussion, because women are often forgotten, but the idea that all men and all women express their neurodiversity in the same way is simply not true.
Talking about neurodiversity
Discussions about neurodiversity are often conducted by people who are not neurodiverse themselves. It is often ‘talking about neurodiversity’ rather than ‘talking to people who are neurodiverse’ which again creates misinformation. A controversial example of this is the organisation Autism Speaks. This is an organisation that sees autism as a disease that can be cured and is searching hard for a cure. (I hope that by now you, dear reader, know enough about autism to understand why this is impossible). In addition, they fund harmful therapies to make autistic children appear neurotypical (imagine it as the neuro-variant of gay conversion camps). And let World Autism Awareness Day be the moment that such organisations receive a flood of donations from companies and other benefactors who have not done enough research and therefore mistakenly support these practices.
Within the community itself, World Autism Awareness Day is criticised for this reason. It is a day for companies to throw a positive post online about ‘being different’ and ‘inclusiveness’ and then go back to business as usual. More of a chance to be ‘woke’ than to actually contribute to a better learning, working and living environment for neurodiverse people. The community therefore prefers to talk about acceptance rather than awareness. It is nice that people know that neurodiversity exists, but in order to create a truly inclusive society, we need more than mere awareness.
An example of how damaging it can be when discussions of neurodiversity are led by neurotypical people is the phenomenon of ‘Autism Warrior Parents’ (AWPs). AWPs support their autistic children by trying to cure them or adapt them as much as possible to the neurotypical norm, instead of learning to understand how their children function. Their own social prejudices about autism ensure that their children do not get the support they need. They draw discussions about autism to themselves and put their own experiences first, instead of those of their child(ren). It is an example of ‘ableism’; this is a form of discrimination and social prejudice that occurs when people with disabilities are seen as inferior. AWPs flood the internet with blogs and videos talking about how having an autistic child has ruined their lives, and AWPs’ drive to fight autism rather than understand it has had a major impact on the autism debate. Because autistic people (and neurodiverse people in general) are often excluded from discussions about their own lives, harmful and wrong interpretations and stereotypes can persist.
Nowhere is the impact of this kind of narrative more apparent than in the discussions surrounding vaccinations. Most people know autism as ‘that disease’ that you can or cannot get by vaccinating children. 1) that’s bullshit so just stop talking about it and 2) the narrative portrays autism in an incredibly negative way. As a terrible disease that no parent would wish upon their child. Parents would rather risk actual dangerous diseases that can damage or even kill their children than the (again non-existent) risk of autism. The prevalence of this myth confirms once again how ignorant the average person is when it comes to neurodiversity.
Neurodiverse people are therefore often judged by neurotypical expectations and experiences, which can have a negative impact on neurodiverse people. Hana: ‘’We need to educate ourselves to understand neurodiverse people. I think that nearly everybody who is neurodiverse is given a lot of labels throughout life that we do not agree with on the inside: lazy, careless, weird… but we hear them so often that they might start to feel true. That’s because we are being judged by the neurotypical standard and neurotypical people hold the truth. And that is not specific to ADHD. I think that there are a lot of ugly labels out there for neurodiverse people and this causes a lot of harm since it makes people feel ashamed and prevents people from talking about it and getting diagnosed.’’
When it comes to neurodiversity and inclusiveness, there is still a world to be won. In this article we have tried to explain in a simple and concise way what neurodiversity is and why it seems so difficult to make our neurotypical society more inclusive. In the next article, Sandra, Hana, Dinand, Femke (24, dyscalculia) and Mees (23, autism) will tell more about their experiences with neurodiversity in daily life and what we as a society can do to stop failing them.
Linda den Bol graduated in History (Radboud University) and European Governance (Masarykova Univerzita and Utrecht University) and is currently working as a trainee for the Dutch province Noord-Brabant.
Esmee Slutter studied History at Radboud University and specialised in European cultural history. She is currently working on her Bachelor’s degree in Russian Studies at Leiden University.
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