Sunday 4th April 2021 – Autistic at Times of Covid-19: Autistic and… Dutch?

UPDATE: 31/05/2021
A friend contacted me with a few notes about their points, which I unintentionally misrepresented. I apologise for a. making that mistake and b. taking so long to fix it. I will amend the points changed with italicised additions.

Hi everyone,

Hope you’re all enjoying Easter/Pesach or, simply, an excuse to have a quiet day.

As I didn’t start work as an autistic activist until I moved to the UK, I’ve often been asked what the situation in Holland is like for autistics. I lived in Holland all my life, not going to the UK until 2009, then moving permanently in 2013. My first novel is set in the Netherlands of the 1930s, though I wrote it in English. My entire family is Dutch, so even though I speak English without an accent, some people in the UK have asked me why I’m not doing this work in the Netherlands? Despite the underlying sense of ‘why don’t you go bother people about disability rights in your own country’, (any Dutch readers, I’d be very happy to train or write for you. Hit me up!) there is a real need for more comparative knowledge about autistic rights. Even if only UK or US readers find this blog, it will be valuable for those who don’t have a clear idea about the situation for autistics outside of their own countries.

Of course, there are so many clear differences between the UK and the Netherlands that it would take a full PhD to accurately assess them all. I will start with some general points.

Legal protections

The Dutch government was one of the last in the EU to ratify the Declaration of the Rights of Disabled People, in 2016. Only Ireland and the duchy of Liechtenstein have done so later. The article below discusses the continuing inequalities in the Netherlands itself.

Dutch government is violating rights of disabled under UN convention

Notably, the Caribbean islands of the Netherlands (which together house over 330.000 citizens) are NOT protected by this ratification. The issue remains to be resolved. What can be concluded is that if the European Netherlands is incapable of following the international treaty it signed up on, that the situation in the Caribbean will be even poorer. The inequality between the average citizen in the Netherlands and its crown dependencies is notable, particularly for people who are not white.

Gehandicapten dupe van niet invoeren VN-Verdrag op Curaçao

Education

A few weeks ago, I had an email exchange with a friend in Holland who’s an education professional. I was shocked by what they wrote. I tend to think that my own experiences are somehow not representative of the whole. That I was just really unlucky in that I had to change school when I was a child due to persistent bullying and consequent anxiety.

At the moment, the situation is far worse for autistics than it was in my time.

Autistic children are not being educated in ways that agree with the UN declaration of disability rights. There are practically no Teaching Assistants outside of special schools and some primary schools. The distinction between 3 different ‘intelligence-based’ systems of secondary schools, means that people with highly divergent profiles, like myself, are less likely to succeed. Furthermore, SEN profiles are not shared between educators, healthcare and social care as in the UK. There are no holistic approaches for tackling the inequalities faced by the child. Even my friend, as a classroom science assistant, wasn’t allowed to know any child’s SEN profile, due to privacy regulations. In UK schools, that would need to be the first thing to be shared with new staff, especially support staff.

In retrospect. I was really lucky. Due to my dyspraxia, I couldn’t write well by hand. After several years of my notebooks being marked down due to ink blotches and angry crossings-out – even teachers ripping out full pages in view of everyone else – I was finally allowed to use a computer for homework. Despite this, dyscalculia and plenty of meltdowns, I was a fast learner and did well in school without really trying. Instead I burnt myself out by simply interacting with other human beings. But if I’d had more problems, or hadn’t been in such a small school, I’d not have been able to be educated.

From what I can see, autistic children are being homeschooled in far higher numbers than in the UK, though often without the financial support that would be made available in the UK, which further disadvantages poor, Black and Minority Ethnic and/or disabled parents. I’m not sure about the numbers here, but please inform me if I’m wrong about this!

For other neurodivergences and disabilities, the situation is as bad. My younger brother is dyslexic. Due to a lack of understanding within school and lots of intelligent distraction from him, that was not dealt with for years. He couldn’t read or write until he was 9 or 10. The situation hasn’t much improved in that regard. My friend told me that their students with dyslexia diagnoses are given no extra time for exams and are marked as normal – therefore significantly lower than others.

NOTE: I misunderstood here. At my friend’s previous school, the student who needs it DOES get extra time for exams, but this means they miss part or all of the next lesson. Therefore, the student is not improperly punished for the extra time they need in their exam, BUT they still miss out on significant teaching due to the fact they need extra time. From the age of about 14, though, students would have specific weeks set aside for testing, with additional time set aside for students after the exam. At my friend’s new school, all students have these test weeks, at all ages. Therefore, there is no consistency between different schools and schools in the Dutch educational system can be running on unequal levels; one for students with additional needs and one for those whose needs the system already serves. Sure, there are differences in between schools, but the welfare of differently-abled people has to be addressed on a (inter-) national basis, not be a postcode lottery.

There were no students who used scribes, computers or text-to-speech software. This is such a minute reasonable adjustment; it baffles me that schools withhold opportunities from students like that.

NOTE: my friend also added they’d never seen anyone use text-to-speech software or speech-to-text. Worse, a student at their school is actually from Belgium, where they were rejected from all their local schools because they are blind. Therefore, the student had to move in with their aunt and uncle in the Netherlands in order to get an education. This is a wider problem in Belgium, see here: https://www.kimbols.be/onderwijs/be-middelbaar-onderwijs/vlaanderen-discrimineert-blinde-scholieren.html (article in Dutch). In the Netherlands, all schools are required to take on students with disabilities, no questions asked, and make the adjustments necessary to do so. Yet while my friend’s school said they were happy to take the student, another school near my friend’s workplace refused. That refusal would be legal if and only if there are genuinely no available places and/or funds to do so, plus it requires the school to show this. But: schools will get away with this direct discrimination when the parents are unable to take the school to court or when parents are not aware of these laws.

My friend was clear: Dutch schools are all about preparing children for the ‘big wide world’. You can’t expect companies to make adjustments for you, that’s not how the world works. To mischaracterise disabilities and neurodivergence as ‘an unwillingness to adapt’ is nothing less than vicious, but an institutional fact in Dutch education, apparently.

NOTE: My friend told me about a discussion they’d had with a colleague on how to assist students better, specifically around group work. Would further education establishments (such as universities) provide that in the Netherlands? Perhaps the students’ independence and capacity to do group work would be considered as self-evident. Their colleague made the point that collaboration is a vital skill and that some students actively benefit from student-student interaction. My friend agreed, but it should not be imperative for each student. I 100% agree with my friend. I had the good fortune of being allowed to work together with excellent friends when I did my undergrad. Doing so mostly in English was also a huge help. As a child, I would normally just do the work on my own, in order to avoid having to talk to people. Nowadays, I know that I can collaborate really well, but within specific parameters. Being self-employed is a huge luxury in that regard. Does collaboration need to be a baseline-skill for preparing children to step into the world? Maybe. But it shouldn’t be collaboration on terms that exclusively benefit NTs.

There are support pathways for Dutch autistic children to slowly become independent, with tracks in and out of supported housing. Yet these are not as accessible as the government claims they are, many being left to live at their parents’ home. I know that I, as an autistic with mental health issues, would most likely be in supported housing if I hadn’t gone to live in the UK. I probably would also still be on benzos and quietiapine.

I have also asked Nihâl Altmış from Dutch political party BIJ1 about their experience. They’re also autistic and queer but a few years younger than I am, so on the wrong side of the 1998 Andrew Wakefield disaster that stood at the cradle of the current antivax movement. Would they have received ABA, for instance, where I avoided it by virtue of being too old and/or in Steiner school? If they agree with me sharing (some of) their response, I’ll let you know what they say.

NOTE: Since then, I’ve spoken to them, and they luckily have not had ABA. But they are committed to ending conversion therapy for Queer AND neurodivergent people in the Netherlands, where it all remains legal. Hopefully, their party BIJ1 will include the ending of all conversion therapies, as well as ND and autistic rights, in their next manifesto.

LBGTQIA-rights

Although not all queer people are autistic and neurodivergent, many neurodivergent people are LGBTQIA+. Even though the Netherlands was the first country in the world to ratify gay marriage in 2001, the rights of gay, lesbian and bisexual people have been eroded in recent years. This has to do with the overall political radicalisation to the right since 2001 and a successful movement to blame any lack of progress on Muslims. This claim is as ridiculous as it looks, but Dutch politics in the 21st century has mostly been a race to see who can be most Islamophobic.

For Trans and gender-nonconforming people, the backlash has intensified only in recent years. Holland is not as institutionally transphobic as the UK, since hardcore transphobia is still limited to the radical right. Yet, since the Netherlands has proportional representation, that radical right has 28 representatives in the 150-set parliament, even if we do not include rightwing Christian parties such as the SGP or the increasingly-rightwing VVD, the winner of the elections. You can see the problem here. Transphobia in the UK and US became such a culture war issue because it was a rightwing vote winner. The Dutch right is already busy radicalising its base against trans and non-binary people.

Yet it has also used gay rights as a cudgel to beat Dutch Muslims with. This has stood them in good stead before; many Dutch gays, specifically white gay men, now routinely vote for openly anti-Islam parties. Transphobia in the UK has been spread through many systems, including through the nominally left-wing Guardian newspaper and, shockingly, in lesbian groups. Over the last few years, this has caused many lesbians to radicalise towards the right. Sam Hope talks about their experience of this in the most recent episode of Sarah Stephenson-Hunter’s Simply Equality Podcast. Please find it all the way down on this post.

Note: The Dutch government, today, has come out against banning conversion therapy any time soon. They say they require further investigation, which is naturally a moot point. The evidence is there, they simply do not seem to care to improve the rights of queer people. Instead the government proposes a compromise, including a code of conduct and ‘points of support’ for LGBTQIA+ people. If queer people cannot get a ban on ‘cures’ for who we are, then ND communities don’t stand a change.
https://nos.nl/artikel/2382775-kabinet-komt-voorlopig-niet-met-verbod-op-homogenezing (Dutch)

Worse, in recent weeks, a lot has come out about abusive practices within the gender clinic of the VU university hospital. This is practically the only place in the country to access trans health care. The outcomes have been traumatising and lethal. I don’t want to undersell the suffering of the people who accessed that but it is not my place to highlight my own voice to speak for others. Instead, please look here (on Instagram, in Dutch) https://www.instagram.com/vugendermistreatment/?hl=en

Here’s to everyone who thought Holland in 2021 was a safe place for queer people.

Health

The health inequalities suffered by disabled people in the Netherlands are significant. The Dutch healthcare system is not single-payer, as in the UK, so health insurance is paid to private companies – though premiums are capped by law. If you need help to pay these costs, you can get tax credits from the tax service, a part of the central government. The tax system is reliant on self-reporting and requires every individual Dutch person to do a whole lot of admin in the month of March. I have spent hours weeping over very simple tax data that I had to fill in when I was in my early twenties. That is if you are even capable of dealing with it yourself, which I at least am now. My partner would not be able to do it on his own, since admin stresses him out to the point of meltdown.

Recently, the tax system was in the news due to the so-called toeslagen-affaire, where child benefits received by poorer families were fraudulently demanded back, pushing thousands into debt. There was even evidence of racial profiling within the tax service. But even without that deliberate racial profiling, those hit hardest would be disabled people and people of colour in the Netherlands. This is because being disabled is expensive under the current system and those expenses fall to the disabled person and their families. Therefore these families are more likely to receive tax credits and child benefits. If you or your child are both disabled (therefore more economically vulnerable) and a person of colour (therefore more economically vulnerable) you were very likely to have been intentionally impoverished by the previous government.

Other health inequalities are due to the ‘eigen risico‘ policy, in which people have to pay for particular amount of healthcare out of their own pocket. The inequality inherent in this is obvious, but for those of you who need it spelled out: if you are disabled, you have less money, due to having less access to work. If that means you also have higher health spending, then any further out of pocket spending before the insurer even has to step in will put you in an even more vulnerable position. One could argue that the ‘own risk’ policy incentivises making good health decisions, but even if that argument wasn’t offensively wrong, I would like to know how I could choose to not have a neurological difference that has been part of who I am since birth. Another argument would be that it would drive down costs for insurers, which would be evident in the monthly bills to the consumer. Again, this has never actually worked due to, you know, capitalism. Additionally, the ‘eigen risico’ spending cap is higher for mental health care than for physical health care. Just so you know.

But, you say, the UK is also pretty damn capitalist. Why, then, do Dutch autistics have the issues they do?

Culture

One possible issue is Dutch culture. Dutch culture is notable for its normativity. By this I mean that being ‘normal’ is what is most prized in a person. If you stand out, due to choice or lack of it, When I was a child in Steiner school, I was told I was an Indigo Child (a new-age pseudoscientific concept describing the purported next step in human evolution). Or maybe I was just a sensitive boy, the subliminal homophobia of a statement like that is quite evident now I’m older. I was also highly sensitive, according to dozens of people I met when I was in Holland.

The discourse around neurodiversity has for years been stymied by the preponderance of so-called hoogsensitiviteit, or being a Highly Sensitive Person. In a nutshell, this paradigm sees sensory sensitivities that would be seen as part of the autism spectrum or neurodivergence as personality quirks. I have done significant research on this and even did a training surrounding the compatibility between HSP and neurodivergence. My findings are that the distinction is one without a difference. The needs for HSP people and those who are ND are the same, it’s just that personality quirks are not protected by law. The HSP lobby in the Netherlands is still strong, there has even been a specialist magazine on Dutch shelves since 2019.

Note: I have done more research since, even found an online UK-based HSP event that was a pyramid scheme. I will talk about this more in the future.

However, in Holland, the discussion has been more about whether sensory sensitivity even exists in the first place. That people with additional needs are ‘just being difficult’ (particularly women) while at the same time seeing those with actual diagnoses as lost causes. To most people, autistics are still Dustin Hoffman in Rainman or Sheldon Cooper in The Big Bang Theory (see my blog series on Autistic Coding on Stage for more on this). Women are still diagnosed far later than men due to outdated ideas on autism. Homeopaths and other quacks are still allowed to peddle their wares, as in the UK. The CEASE “therapy” was designed by a Dutchman, Tinus Smits and is still used by homeopaths.

Unlike the UK, where the National Autistic Society has a great degree of power and at least gives lip service to Actually Autistic voices, the Netherlands does not have a strong lobby of openly autistic voices. The NVA, for instance, uses person-first language and Health, Education, Social Care and the workplace are all unsafe spaces for autistic people. Reasonable adjustments are not even slightly recognised as necessary and autistics are expected to fit in or get out. The mental health outcomes are predictable. The percentages of people in work are higher than in the UK, but the diagnosis rates are lower, particularly for women. It is likely that diagnostic overshadowing is common, too. As an example, I myself was diagnosed with chronic depression, anxiety disorder and personality disorder NOS (not otherwise specified, which is psychodiagnostic jargon for ‘no f***en clue mate!’) before the last one was replaced with Complex PTSD in the UK.

So?

What needs to happen now? Well, Dutch culture simply isn’t very comfortable with difference and those who are different have been forced to fit in or get out. But recently, there has been a growing movement of autistics who are advocating for an improvement in disability rights, by addressing the root causes of inequality. I have met quite a few Dutch autistics who are amazing people. They say that their rights are limited but many are at least able to live. The benefits system, when it works, works quite well. They are able to live off those benefits without being constantly harassed or pushed into crime or poverty as in the UK and US. There are severe inequalities, still. The discourse around autistic lives is maybe 15-20 years behind the UK’s. The rightwards turn in politics over the past twenty years is still very concerning, especially with public discourse towards the disabled being even more cruel doing times of economic stagnation. But due to people like Nihâl, for the first time in twenty years, I have a tiny spark of hope that things can get better.

Additional reading/watching/resources

This article comes courtesy of my mother, who is one of the earliest readers of my blog:
https://nos.nl/artikel/2375166-autisme-bij-vrouwen-vaak-later-vastgesteld-had-me-geholpen-als-ik-dit-eerder-wist.html