CONTENT WARNING: The following post talks about mental health, strong negative emotions, abuse and suicide.

UNDER THE MASK

I’ve just spent the weekend at Airecon, a tabletop games convention, and while I had a good time there, the result of being in a noisy, high-input environment for a long time, with limited sleep, and of breaking my usual routine, is that I borrow energy from the week ahead. I can appear relatively functional, conversing with friends, doing a talk and taking part in a live comedy show, and then afterwards, the mask drops and I collapse. If it’s ok, I’d like to talk to you about that, today. I have spent several days trying to present a version of myself that is real, but very controlled, and incomplete. So now I’d like to share another one, one that I feel is less acceptable, but also real.

I often struggle with feelings that I, my family and the world would be better off if I didn’t exist. At forty, I was diagnosed as autistic. Last year, I was also diagnosed with ADHD. These are conditions (or, if you prefer, cognitive differences) that do not go away. Some symptoms of ADHD are amenable to treatment with medication for some people. The rest of it, the way of being, is – according to the current medical consensus – permanent.

I have experienced bouts of depression intermittently since I was a teenager. At their mildest, they just make my life feel unenjoyable and pointless. Any more severe, and they leave me unable to work, unable to care for my children, unable to cope with anything more complicated than going to the toilet.

I manage anxiety pretty much every day. I wrote a book about it, spoke with experts and researchers in almost every field I could think of, from neuroscience, sports science, genetics, gut health and psychedelics through to hypnosis and theology. I learned some things, but I’m not sure, five years on, the needle has meaningfully shifted. I’m not always cowering in terror, I’m not always actively scared, but my entire life, all my habits, almost everything I do is shaped around the anticipation, reduction and accommodation of fear. It’s like an old, infected wound that keeps reopening, one that my muscles have learned to brace against, until my whole posture warps.

Recently, there’s been pushback against the growing neurodiversity movement, with articles and opinion pieces appearing in the mainstream press, often quoting politicians, claiming a rash of ‘overdiagnosis’, a faddish rush for labels, a ruinous tide of adults and children claiming to be disabled and asking for additional, expensive support. Of course some people really are autistic, they say, and those people deserve help. They’re just against unscrupulous parents exploiting the system to get unnecessary perks for their children. They’re against adults who are just a bit sensitive getting rights and privileges formerly reserved for an extraordinarily disadvantaged minority whose mental and physical impairments rendered them incapable of surviving independently.

Whereas terminally-incurious glassy-eyed wingnuts like Reform deputy leader Richard Tice openly scorn tiny accommodations like allowing pupils to wear ear defenders in noisy classrooms, most of the opposition is more canny, laundered through the Centre-Right and Centrist press in the form of ‘reasonable concerns’. We don’t want to strip the disabled of rights or support, they say, heaven forfend – we’re simply asking for a grown-up, nuanced conservation about the expansion of diagnostic categories and the realities of institutional capacities. Local governments’ budgets are at breaking point. We need to be able to discuss this without insults getting flung around.

The fact that – even in the ostensibly progressive Guardian – articles typically lead by emphasising the cost of autistic and ADHD adults and children to the exchequer, rather than our status as human beings with lives and feelings, is one of the reasons why the discourse often gets a bit heated for the tastes of the ‘just asking questions crowd’. A large body of research shows how the feeling of being a burden greatly increases suicide risk – more so, even, than hopelessness. This is reflected in the greatly increased frequency of suicidal thoughts and suicide attempts amongst autistic people.

Another is the frequency with which opinion columnists get paid to gob off with a stunning combination of ignorance and smarm at how silly and delicate we all are, calling ourselves autistic or claiming we have ADHD. In the old days, we just called people nerdy or scatterbrained or shy or absentminded or freaks or thick, but now apparently they want us to grant them the dignity of being real, three-dimensional people whose inner experience is not immediately available to us unless we listen! Whatever next?

Autism is not a superpower but it need not be a death sentence. The latter is not inevitable – it is a political choice. Autistic, ADHD and AuDHD people are far more likely to experience clinical depression and anxiety, more likely to attempt suicide, more likely go to prison, more likely to be single or divorced, more likely to experience domestic violence, more likely to be unemployed, more likely to be outside of mainstream education, more likely to die younger, more likely to be disliked by their peers, more likely to be low income, more likely to drown as children.

So many of these outcomes are mediated by how we think about neurodivergent people, and what we do, as individuals and as a society, to accommodate people who experience the world somewhat differently to the average person. It’s often hard to see from the outside. Most neurodivergent people learn early that being visibly different in ways that society does not approve of is dangerous and unpleasant. We get rewarded for hiding our experience. Even the most well-intentioned of people around us may mistake chronic burying of our preferences and difficulties as progress.

‘The danger,’ wrote Simone Weil, a philosopher and Christian mystic who many biographers suspect was autistic, ‘is not that the soul should doubt whether there is any bread, but that, by a lie, it should persuade itself that it is not hungry.’ We can convince ourselves we are coping. That the anxious collapse, the exhaustion, the misery, are all localised incidents, or otherwise, failures of character that we can correct if only we hate ourselves enough.

I write and talk about being AuDHD every week now, and I still don’t feel safe or comfortable doing so. I suspect that many people don’t really believe that I am anything more than a whiner – an entitled, oversensitive, rather self-obsessed victim of a modern culture that pathologises all sorts of normal human emotions and that insists that everything must be a medical disorder that requires pills and treatments and special badges.

I know because, before my diagnosis, I privately had these unkind feelings about others, sometimes. I still sometimes catch myself in a judgemental thought, an instinctive mental eyeroll at someone experiencing big emotions that appear out of proportion with a situation. I also judge and doubt myself every day. Some people are very kind. Some people are dismissive and ignorant. A lot of people are sort of notionally supportive until the reality of neurodivergent behaviour or needs inconveniences them or asks for them to rethink their instinctive assessment of a situation, at which point they treat autism or ADHD as character flaws, and neurodivergent people like burdens.

Originally I was going to write a bit about my experience at Airecon, but, to be honest, over the weekend I kept thinking about how rarely I find myself in majority- or all-autistic company, how unused to it I am, and how much being with people who believe you when you allude to your internal experience – because they know – changes your sense of the world. I know lots of autistic people who I love, and who I admire very very much.

Acceptance doesn’t magically switch off my AuDHD. I lost my car keys on the Sunday and my self-talk instantly went repeatedly telling myself that I was worthless, a failure, a stupid, broken thing with no future, and that I and everyone else would be better off if I was dead. This highly-negative self-talk arose partly from exhaustion, partly from the way in which ADHD impairs my ability to regulate my emotions, and partly from a whole life lived of repeated forgetting, misinterpreting, avoiding, losing or getting overwhelmed, so that mishaps that happen to most of us from time to time are much more frequent, to the point my life is constructed around trying to avoid them.

Not remembering things or losing things seems like a comic misfortune, but the cumulative effect, especially if you get overwhelmed easily and find comfort in predictability, is the gradual chipping away of self. You know your day or week could collapse at any moment because you’ve lost or overlooked something. You mess up simple tasks or commitments the grown-ups around you seemingly take for granted. You are wholly dependent on a few people around you who help you with admin or catch your mistakes or help comfort you when you become distressed. If any of them ever got sick of you, or rejected you, you literally could not survive. Every time you make a mistake, you impact them, you hurt yourself, and you damage your fragile sense of self-efficacy, self-esteem, and personal safety.

A lot of social media content about autism and ADHD at the moment feels pretty miserablist and doomy to me, and I don’t want to contribute to that. There must be ways through. There must be means of finding community, of recognising and honouring and supporting our neurodivergent children. Of enacting, in our thoughts, in our deeds, and in our governmental policies, the simple truth that other humans are as real as you. But they may have different needs, different experiences of the world. Your model of what’s going on for them is very probably wrong.

I want to find ways through. I want to find hope. I feel like we must cultivate a semi-rational optimism, even if we ultimately fail. Believing ourselves powerless can become a self-fulfilling prophecy. Life is too precious, too lustrous with detail, to give up that easily.

I do not want to simply yield to a wave of ignorance and prejudice about the different human minds that have always been here. But life is already overwhelming for me without my being asked to find the time and energy to fight, continually, to be believed about the reality of my experiences, to be recognised as a worthwhile human being, deserving of compassion and safety. I don’t derive any pleasure out of scolding people, and while I’m capable of being sanctimonious, really my only desire is to live to see my children grow up, and for the world they inherit to be one where thinking and feeling a little differently are recognised as valuable, as beautiful, equal expressions of our diverse humanity, and are accommodated for.

In case you find writing like this interesting, I’m currently working on a nonfiction book about autism, and wonder, and monsters, that hopefully will have a bit of magic and joy and hope alongside the recognition of the very real challenges we face. I have a ko-fi page where you can drop me a donation that helps me, a writer and father, support myself while I try to make art that helps people a little. Thank you.