Living with neurodiversity in our society.
Last week, on World Autism Awareness Day, you could read the first part of our neurodiversity series. For those who have already, welcome back! For those of you who have not read last week’s introductory article, you can find it here. This article is a sequel, so it is worth reading the first part. In part one you have read about what neurodiversity actually is, how society still falls short when it comes to being inclusive for neurodiverse people. In this part, the group of neurodiverse people we have spoken to will talk more about their experiences as young and neurodiverse individuals in a society that is set up according to neurotypical standards (or to repeat the metaphor of the building blocks from the previous article: How the star has to live in a world that is fully adapted to the triangle).
Who did we actually talk to? Sandra (19, ASD), Hana (27, ADHD) and Dinand (21, PDD-NOS) already spoke briefly last week. In part two, they will again share their experiences. In addition to that, Femke (24, dyscalculia) and Mees (23, ASD) will also introduce themselves and share their experiences with you. In our conversations with this group of people, we mainly talked about neurodiversity in daily life. What problems do they encounter in life because of their neurodiversity? Many of these obstacles are situations that are often seen as “normal”. A neurotypical person might never think about these possible obstacles, because they do not exist for them. Since the group is made up entirely of young people, this article will focus on their experience in the educational system, work life and everyday things like getting your driving licence.
Neurodiversity and school
Going to school is inextricably linked to your childhood and lays the foundation for your further life. Did you always like it? Probably not, because going to school is hard work. Yet for neurodiverse people it is often just a little bit harder than for neurotypical people. Sandra is 19 and was diagnosed with autism when she was 18. Because she did not know exactly what was going on for a long time and because she wanted to follow the neurotypical norm as much as possible, she finally ended up in an autistic burn-out during secondary school. This type of burnout can have various causes, but in Sandra’s case it was caused by long term – and unconsciously – ignoring her autism.
For years she suffered from fatigue and headaches: ”In secondary school I went to the GP very often, especially for fatigue. They took blood samples on multiple occasions, but they never really found anything, and they never did anything to find out what it was.” In retrospect, this fatigue was caused by constant overstimulation. She spent whole days in a room full of talking people, bright lights and many impressions. This was too much for her, which made school life extremely difficult to bear. “I came home from school exhausted and with an enormous headache, I slept until dinner (around five o’clock) and then I started my homework. I had to take aspirin almost every day because of the headache, otherwise I couldn’t cope. I did my homework until I went to bed, and then it all started again.” The symptoms eventually got worse and translated into permanently inflamed lymph nodes, for which she went to the GP once again. She told her that her symptoms were caused by stress and that she should keep going to school, ‘because everyone gets sick every once in a while’. She ended up walking around with these symptoms for a year and a half. It was a vicious circle because these symptoms worsened her executive dysfunction which made her symptoms worse over time. .
What really helped in the end was the COVID-19 lockdown, when she could study at home in a low-stimulus environment. Her symptoms lessened and after a while disappeared altogether, which made her realise that things could also be different: ‘‘Autistic burnout starts psychologically, but can manifest physically if it goes on for too long, and that was the case with me. Life wasn’t fun anymore. I thought ‘after secondary school it will be better’ and that became my aim to just get rid of it. I felt like a zombie during that period.”
Hana (27) also encountered problems at school because of her undiagnosed ADHD (she has only had the official diagnosis for a few months): ‘‘I was always told that I was talented and smart, but if that was the case, why did I have to study for five hours without learning anything? In high school, my grades went from A’s to D’s. Everyone called me lazy and said I was wasting my talents by not working hard enough, which was very painful because I really tried my best.” In high school, Hana had the most trouble staying focused on a subject, something people with ADHD are more likely to suffer from.
Schools are generally not the best environment for neurodiverse people. It is a loud and massive environment and people can easily become overstimulated. Moreover, the hours are long, there are many different subjects to be learned, much is asked in terms of planning and time management and at the end of the day everyone is assessed in the same way; by making tests/assessments. Working with deadlines and moments where you can ‘pass or fail’ can arouse feelings of anxiety and stress more often and more strongly in neurodiverse people.
The education system in the Netherlands alone is extremely diverse. This means that schools have a great deal of freedom in how they organise their teaching system. For many neurodiverse people, a successful school career depends on a correctly designed teaching system, including the right guidance. Last week, the failure of a “new” school system in Silvolde (Gelderland, the Netherlands), made the news. The Laudis College uses a flextime system: three to four 80-minute subject lessons (Maths, English, History, e.g.) per day interspersed with breaks and at least five 40-minute ‘flex’ periods per week. This form of teaching places a great deal of responsibility on the students, as they themselves are responsible for the arrangement of the ‘flex’ time. In addition, the school building is also designed around this form of teaching, which means that instead of just closed classrooms, there are also teaching plazas where sometimes up to 120 people can sit together. This is exactly an example of a teaching system which in itself is not at all inclusive for neurodiverse people: executive dysfunction can make the enormous personal responsibility difficult and overstimulation is lurking because of the long teaching hours and the large groups of people you are forced to spend a large part of the day in.
Executive dysfunction is something that many neurodiverse people have to deal with. Executive dysfunction occurs when several of the executive functions do not work quite as well or differently from the neurotypical mind. Executive functions are the aspects of the brain that are essential for achieving goals. These include planning, organisation, flexibility, long attention span, task initiation and goal-oriented perseverance. These are all skills that are necessary to successfully pass through our school system. Moreover, this system itself offers little flexibility to the children and young people who need it. For example, extra help and adjustments are given only sparingly and teachers often do not know how best to teach neurodiverse students, if at all. Good guidance can make all the difference, but lack of understanding or ignorance can bring about exactly the opposite.
This is also something Femke has experienced. Femke (24) has dyscalculia, something that was discovered thanks to an attentive maths teacher who advised her to get tested for it. But even after her diagnosis school didn’t get any easier: ‘‘Nothing happened at school. For dyslexics there was guidance and e-readers that read out words, but for dyscalculia there was nothing and I had to explain why I needed extra time, also for other subjects than maths and teachers didn’t understand that. My maths teacher had the patience of a saint: always sat down with me after class and took time for me. My other teachers didn’t have that patience. My physics teacher saw me as a hopeless case and stopped explaining things to me.’’ Interestingly enough, Femke managed to get an 8 for her final maths exam, but never scored higher than a 3 for physics (grading system 1 – 10). ‘‘I truly believe that the right guidance can make the difference. I would never have passed maths without the extra personal guidance from my teacher.”
Hana also often felt misunderstood by her teachers. ‘’Most teachers hated me because they thought I was lazy. I hated high school so much.” Her final exam period was also tough. ‘‘My parents saw me studying for hours every day. There was no possibility in their minds that I would not pass. When I was in the car with my father, I told him I wouldn’t pass history. I just couldn’t remember anything. ‘Impossible’, he said, ‘because you studied for so long’. In the end, I was the only one in the class who didn’t pass. My parents were so surprised. My teacher even pulled me out of the class and said, ‘You haven’t studied at all, have you?’, which really hurt me.’’ She was also often punished for drawing in class and clicking her pen. Things she did that actually helped her concentrate. ‘’I always drew in class, but it really helped me to listen. The clicking of my pen also helped. Some children pay better attention because nervous energy can go somewhere. But I got into a lot of trouble when I drew in class, because I wasn’t allowed to do that. I used to be punished for a lot of things I did to control my hyperactivity.’’
As you can see from the experiences of Sandra, Hana and Femke, good, individual guidance and understanding from teachers is something they missed during their school careers. As an exact opposite of that, there is the experience of Dinand (21), who was already diagnosed with PDD-NOS in kindergarten (nowadays this subtype of autism is included in ASD). After the diagnosis, he was transferred to an institution for special primary education. Because of the smaller groups and the individual guidance he received there, it was easier for him to finish primary school. After secondary school, he went to a regular school. There, too, he received extra guidance: ‘’Once in a while, I was called in for a meeting to ask how I was doing and how the lessons were going.’’ In the second grade, however, the guidance proved inadequate and Dinand’s parents started looking for external help. In the end, he went to a tutor who specialises in helping neurodiverse people: ‘’Twice a week I went to a tutor after school, which took about two hours. I could work on my own, but if I couldn’t work something out or had to do a project, she helped me with that. She also helped me with planning.’’
An early diagnosis is crucial for people with a form of neurodiversity. It often helps them to understand why certain things are difficult for them and to find adaptations. For example, by asking for help or tackling things in a different way that works better for them personally. In addition, as someone gets older, diagnoses become increasingly difficult to make correctly. Children learn to ‘mask’ from an early age. This is the phenomenon whereby people learn to hide their neurodiverse characteristics out of fear of their surroundings. For example, because they do not want to be seen as overemotional, lazy or weird. This masking makes it more difficult to give a correct diagnosis, which makes later counselling/treatment very complicated. For example, psychologists often confuse autism in women with bipolar disorder. Both have a completely different treatment and a misdiagnosis can therefore exacerbate problems.
But even having a diagnosis is no guarantee of good treatment, as Femke’s example has shown. Within society there is frighteningly little knowledge about neurodiversity, which means that teachers often do not know what a certain diagnosis entails and how to deal with it. Both Hana and Sandra have been called lazy, even though they went above and beyond when it came to working hard for school. Behaviour is misinterpreted or condemned due to ignorance, but often also due to a lack of understanding when the diagnosis is there, because there is a strong stereotype about neurodiversity, as you can read in the previous article.
Unfortunately, it also happens that young people drop out of school because there is little help and/or guidance available for neurodiverse people. An example of this is Mees (23). He has been going to a psychologist since the age of thirteen for anxiety and depression. He has received therapy on a regular basis and tried various treatments, but they only helped to a limited or temporary extent. Eventually, around the age of 19, he was diagnosed with BPD (borderline personality disorder). He himself, his parents and his GP started to doubt this diagnosis and in 2021 he entered a new trajectory that ultimately led to the diagnosis of autism. Both autism and anxiety disorder have greatly influenced his studies: ‘’The first two years went reasonably well, I had a fixed schedule and there was a lot of structure. From the third year onwards, it became increasingly difficult. I got stuck on certain projects which demanded a lot of independent planning. I made several attempts at an independent project, which ultimately went wrong every time. My executive dysfunction and difficulty with stimuli did not really help. In the end, I got stuck in the final phase of my studies because I was expected to do a 40-hour internship and a completely independent graduation project at the same time. I came to the conclusion that this was not going to work and I had to deregister.”
According to the report Autism from a Social Perspective (NL), one third of the children who (temporarily) do not go to school have autism and more than half do not finish higher education. A combination of non-inclusive school spaces, ignorant teachers and a rigid and standardised school system mean that school is often much harder for neurodiverse young people than it is for their neurotypical peers and is therefore unfortunately more often experienced as a negative time in their lives.
Neurodiversity and work
The labour market also presents obstacles. Job interviews, for example, are stressful moments where people are confronted with new people, a new environment, all kinds of stimuli and unnatural conversations. The workplace is often a chaotic large space with lots of noise and bright lights, and the working week is rigidly set up: there will be little room to recover for a day if you are overstimulated when working for a boss.
Also, neurodiverse workers may not be treated quite the same as their neurotypical colleagues. For example, neurodiverse people are very susceptible to something called Rejection Sensitivity Dysphoria (RSD). Negative feedback is no fun for anyone, but for neurodiverse people it is much harder to process. Hanna has this to say about it: ‘’Someone can give me ten compliments on the work I’ve done, but a comment like ‘you could have handed this in earlier’ will be the only thing that sticks in my mind. I found out that people with ADHD are much more likely to quit their jobs because they feel unappreciated and easily rejected.’’ Research has shown that people with diagnosed ADHD are more likely to be fired, more likely to resign and more likely to have chronic problems at work.
Femke has had a telling experience in which her dyscalculia has hindered her from finding work. This is in the form of an increasingly popular phenomenon in certain sectors and higher functions that excludes neurodiverse people quite quickly in job application procedures: assessments. An assessment is a series of evaluation tests designed to determine whether a candidate has the capabilities/talents to be hired for a particular job. This tool is often used by the government and large companies and often consists of (intelligence) tests, simulations and role-playing case studies.
Two years before her graduation Femke already knew that she wanted to apply for the Rijkstraineeship: a two-year programme at the Dutch government for recent graduates. New in the year she applied was the addition of a capacity test and a game-based assessment to the selection. The capacity test is meant to indicate whether the candidate has the intellect to handle a particular job. In this case they were looking for an academic thinking level. For her diagnosis, she had to take several IQ tests that showed this level, and with two university master’s degrees under her belt, which she completed with honours, you would think that she would be fine. Unfortunately, the online capacity tests are designed to put neurodiverse people at a huge disadvantage: ‘’The test consisted only of arithmetic sequences, shapes, directions, all the things that are more difficult for me and I also had to do it with only ten seconds per question. So I contacted the company that does the tests. Their answer: they can’t do anything for me. I indicated that the test would not give an accurate result because of the time limit, the whole point of dyscalculia is that my thinking process is different and longer. They said there are no facilities for people with learning disabilities. I was quite taken aback, especially because they didn’t seem to care.’’
‘’I had practised several tests beforehand, but to no avail. During the real test, I simply had too little time to think of what the answer should be. I often had to guess because I was running out of time. Two weeks later I received the result ‘unfortunately you have not been selected for the traineeship’. While I had extensively explained how dyscalculia affected me, given extra information about learning disabilities, neurodiversity and even linked scientific articles.I had hoped that someone would contact me afterwards. I really assumed, 100%, because I really believed that they wanted to be inclusive and would talk to me. So two weeks later I got the rejection without ever having talked to anyone.’’
The final score sheet showed that Femke had scored maximum points on personality and experience, but had received 0 points for the outcome of her test, which resulted in her not being allowed to continue to the next round. ‘’The test is not inclusive in any way. It’s also very stimulating: with lots of flashing lights and things flying around, I don’t think it’s doable for someone with autism or ADHD either. This experience was a very bitter pill to swallow, because I always believed that if you work hard you can achieve anything. So I gave up, even though it is something I really wanted, even though my personality, intelligence and resume are good enough. Only because I cannot recognise numbers when shapes are flying through the screen. Any job application where I see a capacity test as part of the application process, I will skip from now on. What makes me angry is that people are also structurally excluded from the labour market, and even the national government cannot take that into account. I can’t expect the whole world to understand what dyscalculia is, but hopefully I can expect that in the government, large companies, universities etc. there is at least one person who understands it, but that is missing even today.’’
The distressing thing about the situation is that the assessment has been added to the selection procedure precisely to combat discrimination. The tool is embraced as an independent measure by which people can be compared without aspects such as gender, origin or skin colour playing a role. Even though it was introduced with the best intentions, there is one group that the test actively excludes: neurodiverse people. The discrimination ground ‘people with disabilities’ has not been taken into account at all in this case. Even when people raise their concerns about this problem, no action is taken. This is another example of how invisible obstacles for neurodiverse people are in our society.
Neurodiversity and “daily tasks”
Finally, in this article we want to talk about ‘everyday things’. This is perhaps a vague term, because it can cover anything. The difficulty in framing the things we are going to discuss below actually shows exactly how incredibly diverse the obstacles can be that neurodiverse people can encounter in everyday life. Has it ever occured to you that in addition to passing your tests, there can be many other obstacles to obtaining your driving licence? Or have you ever thought about what a process it is to go shopping or do household tasks? These are two examples of “everyday things” that can sometimes be quite difficult for neurodiverse people.
Let’s start with getting your driving licence. Not everyone chooses to do this, but if you did, you will surely have filled in a health statement at the beginning of your exam. Nothing special, right? As a neurotypical person, you can answer most questions with no. Okay, maybe you are partially sighted and you had to do a quick licence plate reading test at the beginning of your practical exam, but that is often the end of it. But suppose you have autism and you fill this in on the health declaration, then you are further away from the plastic card than you think.
Dinand got his driving licence in January 2020 at the age of 19. Despite passing his theory in one go and mastering practical driving very quickly, it took him “longer than average” to get his licence. Not because he needed extra lessons, but because they had to “approve” him first, because he has PDD-NOS. This approval meant that he had to have a compulsory interview with a psychiatrist appointed by the government (the waiting lists for these interviews are very long). He spent 200 euros for a fifteen minute conversation: ‘’He asked me things about whether I drink alcohol, sleep enough, nothing special really.’’ Dinand also had to wait a long time before he could take his practical exam, because his autism required a special examiner. In short, something that already takes a lot of time and effort for a neurotypical person, is made even more difficult and expensive for someone with autism. And the Netherlands is still a mild country in this respect. In the Czech Republic, where Hana lives, you automatically lose your driving licence when you are diagnosed with autism, even if you can drive effortlessly.
Grocery shopping and housework are tasks that neurotypical people often don’t think about. They are part of life and you do them without thinking too much about them. Yet, for neurodiverse people it can mean much more than just those “everyday tasks”. Because of his neurodiversity, something like grocery shopping can be extremely stressful for Mees: ‘’Going to the supermarket feels like a day job to me. The process of shopping, from making a list to going to the supermarket, takes me an enormous amount of time and in the supermarket itself I quickly become overstimulated. I wear headphones or earplugs.’’ Mees mentions executive dysfunction, as discussed and explained earlier, as one of the reasons why keeping up with household chores is difficult: ‘’I quickly lose track of things because I can’t plan or estimate how much time something will take. Taking the initiative to start something is difficult.’’
Building block and all their shapes
In the last two articles we have tried to give a better understanding of what neurodiversity is, how it can be expressed and what people who are neurodiverse encounter in a society that is not designed for them. In education, in work life, but also in daily life, there are still many obstacles that neurodiverse people face, which are hardly visible to neurotypical people. Through the information on neurodiversity, but also through the insight into the lives of Sandra, Hana, Dinand, Femke and Mees, we hope that neurotypical people, but also institutions that still cling too hard to the neurotypical normal, will gain more understanding on the topic of neurodiversity. So that not only the triangle, but also the square, the circle and the star will get a place in the playground that is our world.
However, there is still a lot to be done before we reach this point. So what is the first step? Femke is very clear about this: ‘’If neurodiversity is systematically forgotten about, nothing will be done to make society inclusive for everyone. It has to be implemented from above: ordinary citizens cannot do it themselves. It is up to institutions to implement diversity policies to ensure that when people encounter a problem, it is dealt with. The average citizen really doesn’t need to know everything about neurodiversity, but institutions do have that responsibility and I don’t have the feeling that (educational) institutions and the government carry their responsibility and that is very worrying.’’
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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