Edit: 9th August 2020
I was notified by a friend that I misused the term neurodiverse to refer to people who are autistic, dyslexic, dyspraxic, have add/ADHD and associated conditions and identities. We are, in fact, neurodivergent. Neurodiversity is a spectrum of all neurodiversities, including those who are neurotypical. I will change this in following blogs. I will amend this particular entry tomorrow. Thanks for the feedback xxx ^__^
Again, I’m deviating from my topics last week and the week before. It’s because I’ve been very busy (I’m actually writing the book!) and I’ve had great conversations with friends and colleagues about these blogs and how I’m dealing with everything. Yesterday, my friend Mike told me about the Autism Podcast, where they interviewed Joan Pons Laplana about his experience as an autistic nurse in the NHS. As Mike is a nurse (nearly qualified!), he got in contact with Joan to help his project of connecting neurodiverse nurses across the NHS. I met Mike when I was doing work for Oxford Health NHS Trust, while I was running the Autism Experience Group. Mike and I are planning to work together on NHS trainings for staff, not just to improve access for autistic and neurodiverse patients but also for autistic and ND staff. With that in mind, I also got in touch, offering my help. Hopefully, this blog about being autistic in the workplace will be of some use.
Despite the focus of mainstream organisations, most autistic people are in fact not children, but adults. The rates of autistic unemployment are severe. In the UK, only 16% are in full-time employment and only 32% are in any form of paid employment at all¹. This does not mean, however, that we don’t want to work or contribute to society. Quite the opposite, in fact. Despite preconceptions, most of us are highly engaged people who deeply care about society and our environment. We want to contribute to the world around us. However, practically all workplaces are built on a neurotypical blueprint.²
If we don’t understand the structural inequities the world is built on, we can’t change anything for the better. Therefore, these approaches are not about changing us. Autistic and neurodiverse people already put in full-time hours just to do basic tasks in a way that doesn’t put them at risk of harm. We’ve done our job, but it isn’t working. We can’t walk into a room we are shut out of. So, it’s now time for systems to give. I’m not saying that autistic people have no role to play in improving their workplaces. Quite the opposite. Workplaces have to be made accessible to autistic and neurodiverse people, to the benefit of all. But giving every staff member a fidget spinner and then claiming victory for neurodiverse rights does not solve deeper underlying problems.
Finding a Place That Fits
Finding work is tough for everyone. I’m currently trying to find work, as an autistic trainer, research support person and as a teacher. It’s seriously difficult to find anything right now, for obvious reasons. But I have also gone back to teaching this Monday and I’m thriving. I have been working at my current job since October 2017. It is the longest I have worked anywhere and I’m hugely proud of all I’ve achieved and all the students I’ve supported. I’ve become part of the furniture, which has been a dream of mine since I was fired from IKEA at age 17.
Only half of that joke was true.
I was fired from IKEA when I was 17.
I couldn’t have done it without a Director of Studies who took a chance on me, but also previous staff who paved the way. When I joined, I was constantly frightened of being let go. But my colleagues were brilliant in their support. One of them has Bipolar 2 and told me that he’d had panic attacks in the staffroom, that summer. He would then be given the rest of the day off and he’d come back to teach the next day, if he felt better. And he was still there. I was baffled, were they really that accepting? Yes, they were. And still are.
So what do I do? I disclose. Because I can. I have disclosed my autism diagnosis since 2015. This means all jobs I have applied for since then have been aware of my autism and mental health issues. I would rather be discriminated against at the door than kicked out after having pretended to be someone I’m not for weeks or months, with all the psychological strain that involves. Of course, I would prefer not to be discriminated against at all, but we don’t live in that world yet.
What are the rules? Who’s got the power?
For me, the most difficult thing about the workplace – if we even get past the interview stage – is what is unspoken. The office politics, who likes who and who doesn’t. The snide remarks, the looks, the irritation that people scrape from the presence of those who are different; these coagulate and allow them to exclude and bully us. From ignorance to violence, micro-aggressions to sexual assault, all these are forms of behaviour that seek to diminish us.³
I don’t believe that bullying is unique to those who are damaged and bullied themselves – quite the opposite⁴. Bullying, from snarky comments to physical assault, has been allowed to be the means by which power is communicated in schools, the street and the workplace. Cruelty is the movement of power between people. But that doesn’t mean it should be so.
Neither do I believe autistic people are saints: we shouldn’t have to be! We are human like everyone else. In this society, we happen to be the victims of bullying because of our differences. We can however help others to move away from cruelty as a mode of communicating power.
Being neurodiverse, most of us learn to mask pretty early in childhood. Masking is a mode of behaviour described by French-Martiniquan psychiatrist Frantz Fanon in Black Skin, White Mask (1952). Black people, living in a white supremacist society, learn the white cultural expectations of what they are supposed to be, imbibe them and behave accordingly, in order to keep themselves safe. Fanon was talking about race, but this pattern of behaviour also applies to women and minority-gendered people, queer people, people from working class-backgrounds, immigrants as well as those with invisible and visible disabilities. With intersecting identities, the level of masking is even more complex, having to wear several masks at once and switching when appropriate. Again, masking takes a significant physical and emotional toll on those who are forced to do so.
Worse, those who have majority-identities (be they white, neurotypical, cis, straight or able-bodied) aren’t usually aware that they’re making demands of others. They just assume that the way they operate is the right way to operate. When challenged, those people get highly defensive. That’s understandable. When these people are ignorant of the way their behaviour disempowers others, of course they will fight back. But the point of privilege is not intention, it is the effect it has when used to benefit oneself over others.⁵ Diversity is not an end in itself, it is a means to undo systemic inequalities.⁶
For autistic people, this is highly familiar territory. Masking is highly prevalent in the autistic community, for the simple reason that it keeps us safe. We don’t yet live in a society where we can be ourselves without being in danger of violence or exclusion. But, like the gay/lesbian movement from the 1960s onward, those with more privilege (such as myself) need to be more visibly autistic. Again, if I make myself vulnerable, such as by writing these blogs, then, hopefully, all of us will be a little bit safer to be who we are.⁷
I love being a teacher. It means that my day is cut up into specific chunks where I’m on and ones where I’m not working. If I’m in the classroom, I’m in total control. I’m at ease in those spaces because I know where the lesson is going, I know how to keep attention focused and I know the students I’m working with. I love teaching languages, because it allows me to rejoice in one of my special interests and share it with others. But teaching also means I’m in control of whoever speaks and how loud that is, who is moving and where, what the light and temperature of the room are like and what the mood of the room is. The rest is collaboration. I have come in to school in meltdowns, walked through the door and felt fine during the lesson itself. I was just as able to lead a productive lesson.
Yet, education is not free of bias. Quite the contrary. Neurodiverse students do not have equal access in school. For instance when we look at exclusion rates, student with SEND (special educational needs and dyslexia) account for 14.9% of students,⁸ but 47% of exclusions.⁹ The numbers of autistic students who drop out of university is significant.¹⁰ I am not aware of any systematic support for neurodiverse teachers, lecturers, support staff or of groups such as the National Police Autism Association within education, but I’d happily be proven wrong. I have had to be very, very lucky to find people who, through education and empathy, can see my strengths and use them in a way that is not exploitative.
The way that empathy is communicated is through conversations. Asking questions is vital. This week, I was asked “how do you deal with uncertainty?” Well, I don’t really. But having taught for so many years, I have lessons at the back of my mind that I can pull out at a moment’s notice. I can respond to questions arising in class and I can follow through accordingly. At the moment I often don’t know what my lesson times are. Then I make contingency plans and keep on top of my daybook so I’m prepared for the most likely situations. The big thing that helps me with that, oddly, is money.
I experienced poverty as a child, then later as an adult I hovered between precarious and poor. This is true for many, if not most autistic people. Rather than being tech billionaires (most of whom are sociopaths, anyway, not autistics), we are actually face huge financially obstacles to thriving. Money always has been a trigger for me. I need money to not be thrown out on the street, which was a huge fear of mine. Therefore, I approached jobs with a manic desperation. I needed to succeed, or I would die. Since then, I have spent years building up my savings, so in the case of serious illness or hospitalisation, I’d be able to survive for a few months. Because of my improving mental health, that has not happened.
When I was at Autscape this year (still awaiting videos from them and Autistica – be patient. Autistic inertia is definitely a thing), I watched Yo Dunn¹¹ speak on autistic activism. She noted that much autistic activism seeks bespoke solutions for our community but doesn’t address issues systemically enough.
So, looking at solutions that would not just support our community, Universal Basic Income would support all of us who are already living paycheck-to-paycheck. Unlike what those opposing it believe, being forced to work or starve actually worsens job performance and productivity. It certainly does for me. My younger self would experience stress so severe that my anxiety about losing the job contributed to me being let go, in turn exacerbating my anxiety. This happened usually early in my time at the job. But if I’d had UBI, I would have lasted longer at those jobs, even with the discrimination that was present there. People don’t want to work to survive, they want to work to give back. Let’s allow them to do so.
The caring professions are also not immune from discrimination. When I worked for the NHS, I found that the systemic issues affecting autistic people were in the very nature of the work that was done and the people who did those jobs. Neurotypical healthcare workers are particularly vulnerable to defensiveness and even aggression when called out on bigoted statements and practices. This is a huge issue, because why work in healthcare? To make the world a better place. To help people. But what if those people tell you that the way you work is actually discriminatory and counterproductive, that challenges your sense of self. Neurotypical people live in a world that has never told them they are innately wrong – at least, not on the level of the way they think. This privilege is compounded by race, gender, gender identity, sexuality and class.¹² Whether intentional or not, the outcome is the same: professional exclusion of people who are minoritised.
I have heard stories from friends who were let go from their positions because of their autism and neurodiversity within the health service. By the mid-to-late 2010s, it often seemed that the jobs we managed to keep the longest had been the ones that knew least about autism. The ones that knew slightly more were aware that they didn’t have the means to support us and therefore excluded us. This has to stop.
The problem with inequality is that it is a system kept in this state by the people who benefit from it. If we want to increase access for neurodiverse people in the workplace, we have to recognise that inequality. ND and autistic people have been working for decades to be allowed into the workplace, but it’s not that we haven’t tried – it’s that access is denied to us. Having to be lucky just to survive is a terrible way to run a society. So, something’s got to give. Let’s change the system.
Thank you very much for reading. This was yet another big one. Next week I might write again about employment (for instance, international disparities in access to safe and accepting workplaces), or pick up where I left off with depression and mental health. Or something else entirely. In any case, let me know what you thought. Love you all individually and collectively. xxx
² Also note the severe health inequalities caused by the medical orthodoxy that the “average” human is white, male, cis, straight, able-bodied and neurotypical. Vox did an excellent video on the topic late last year: https://www.youtube.com/watch?v=CVdn-2KE2bs
³ When I briefly taught at a school for autistic children, I was surprised how many of them were obsessed with power, in the sense that they tried to understand what it was that was so often wielded against them.
⁴ As this research from 2014 shows, being bullied results in higher presence of C-reactive protein. This protein has been associated with higher cardiovascular risks. Bullies, however, had lower levels of this protein, lower even than those not involved in bullying at all. Bullying others, therefore, reduces those cardiovascular risks. https://pubmed.ncbi.nlm.nih.gov/24821813/
⁵ A few years back, Feminist Frequency did an excellent video on privilege, I have used in many lessons: https://youtu.be/wMIiIgUmarE Support Feminist Frequency, especially their new Games and Online Harassment Hotline (only available in the US), they do incredible work.
⁶ Paraphrased from Chana Joffe-Walt’s incredible new podcast Nice White Parents. Find it on any of the podthings you use or here: https://www.nytimes.com/2020/07/23/podcasts/nice-white-parents-serial.html
⁷ As I’m looking for a job at the moment, I am aware that I am making myself vulnerable to discrimination. It may be illegal to discriminate on the basis of disability and identity, but that doesn’t mean those laws are actually enforced. It still happens, frequently. I’ve faced discrimination, both indirect and direct, dealt with psychological and physical violence against me. I’ve been excluded from career opportunities (particularly in comedy) and I’ve had potential housemates cancel on me with short notice because they found out I was autistic. It is up to me and people like me to keep being vocal and put ourselves in mild danger, in order to reduce those of us who are at even greater risk.
⁸ See the 2019 Timpson report: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/807862/Timpson_review.pdf
¹⁰ I don’t have the data to hand, but please inform me about the numbers. I think there was a speaker at this year’s Autistica Research Festival who discussed it.
¹¹ Yo is a total hero of the community. Her website is here: https://www.consultyo.com/
¹² I was part of a few LGBT staff meetings when I worked for the NHS. At the first meeting, gender-neutral toilets were discussed. I was baffled that most of the staff thought this was essentially ‘different toilets just for trans people’. I also heard a middle class white woman point say that some religious people might take offence at this. They were surprised that for many transpeople, if they don’t have access to gender-neutral toilets, they do not use them for fear of violence. Additionally, but for one young bisexual woman and two men of colour, all members of this group were white, cishet women. There were no non-binary or transpeople in the room. This was in 2019.