It is a truth I should eventually accept, that I can write speeches just fine, and I can give speeches just fine. I can’t, however, give the speech I wrote. I’m absolutely incapable of sticking to what I’ve written, and I should probably accept that and stop printing off five pages of words I’ll deviate from in the wildest and most meandering ways.
I gave a speech yesterday at the marvellous Festival of Autism 2018. I’ll be writing a separate post about the festival, which was better than I ever could’ve imagined. But, at the request of a parent who attended, and who was so kind as to talk about it today, I’m making the full text of what I actually wrote available here.
My journey to autism acceptance didn’t start with my diagnosis; it started when my eldest, then 11, was flagged as probably autistic by the school. I had, of course, noticed that this kid wasn’t like every other kid, but they were exactly like me growing up, so surely they were fine. Obviously, later, I realised that “fine” and “autistic” are not mutually exclusive – but that, too, was something I could learn through my child but not through myself.
I had been so staunchly discouraged from behaving as was natural to me, that it took the school’s explicit words, “When were you going to tell us your child is autistic?” to allow me to see that those shared traits were actually indicative of our shared neurotype. Once the words had been said, it was more obvious than I wanted to believe.
My first concern was that my child hadn’t been supported appropriately, and so I began to seek out written materials online that could help me adjust my support for them. And what I found is my first piece of advice to you: I found an absolute wealth of information written by autistic people, for autistic people and allistic alike to read and learn. It wasn’t something I’d even thought about before then, but again, something that became blindingly obvious once the door was opened. If you want to know how it feels to experience something, you don’t ask a bystander what they think; you ask the person experiencing it.
Look for material produced by autistic people, for information about being autistic. Look for material produced by disabled people, for information about being disabled. I assure you it’s out there, and I assure you it contains some absolute gems. More importantly than reading it yourself, make these materials available to autistic people. Encourage them to contribute, if they can and want to. The internet has opened the path for us to have an international community that encourages and strengthens us all; even just reading about someone else’s struggle with some part of society can be so relatable it can relieve an enormous loneliness that is forced on us by society.
Soon, I learned about the neurodiversity movement and the social model of disability. While some aspects of disability are down entirely to our conditions, others are entirely societal in nature. Additionally, the aspects we can’t get away from are only disabilities to the extent that society is willing to stand by and allow them to be. For example, I’m not going to get better at walking, no matter what accommodations are put in place. But the provision of ramps, a disabled hotel room and the assistance from the wonderful people here at the Festival have successfully removed the barriers that would have kept me from attending. Once you apply that principle to the autistic people you’re trying to support, a paradigm shift takes place that makes an enormous difference in how we experience our autism both as individuals, and as a part of society.
The next step was fairly obvious: neurodiversity celebrates the differences between neurotypes without accepting that some are less valid or valuable than others. I don’t know how aware allistic people are of the way autistic people are treated by society and by the media, but there is a pervasive message we encounter every day, that there is something dreadfully wrong with us. The way in which this message is delivered lines up with those horrible functioning labels people insist on applying to us. “High-functioning autistics” are heartless, soulless machines with no empathy, and deserve no help because they don’t need it, according to our allistic observers. “Low-functioning autistics” are to be pitied and deserve no agency or autonomy; they are to be pitied and beatified without being listened to. Hardly ever – and it says something that the only example that springs to mind just now is the most recent Power Rangers film – do we get to actually be people, our inner lives as rich and diverse as those of any other group.
Supporting autistic children is hard work. Not because the children are autistic, but because society is not, and society is not organised to accommodate variation, nor is it particularly keen to change. One of my first contributions to the body of work penned about autism by autistic people was an explanation of why parenting my kids is hard. It isn’t because of my kids. Every kid is different, and every kid has different challenges, but what makes it hard is society’s unwillingness to accept difference. This is my second piece of advice to you in supporting autistic children; make it abundantly and ceaselessly clear to them that the struggles they are facing are struggles against societal norms and expectations, against the capitalist ideal that everyone should be the same and should be capable of producing wealth for someone else. It is not a struggle against their brain, against their neurotype, against their autism, and therefore against the very core of who they are. It is a struggle against a system which purposely and maliciously fails to account for their existence.
Once the blame is so shifted away from them, they can thrive and be who they are. The focus can be placed where it belongs; on how to work around a faulty system, instead of how to adjust a faulty child. While a lot of the coping mechanisms may be the same, the change in attitude tells the child that they are valid, they are allowed to be who they are, and they are not at fault for their own struggles.
The social implications of the autistic struggle are many and vast; one of the first ways it tends to materialise is through bullying. For many of us, that never really goes away. My eldest endured bullying for years before growing into the “weird is good” age bracket, and making other neurodivergent friends through a school programme. I had to remove my youngest from school earlier this year because his bullying had progressed to detailed death threats; threats to murder me, his mum; and incessant violence, often in the presence of teachers or teaching assistants. At one memorable point, a child launched himself at my youngest and punched him five or six times before he was removed. When my child tearfully turned to the teaching assistant who witnessed the event, she coldly told him, “Well, you were making funny noises.” And I’ve no doubt he was; he often makes them, unknowingly. Especially when he’s happy, or nervous. And that TA has taught another class that it’s okay to exclude and harm the kid who isn’t like everybody else.
In situations such as those, where the school is unwilling to ensure a safe learning environment for a child, it can be incredibly difficult to know what to do. For my son, it became a never-ending stream of self-recrimination. “I’m wrong, I’m bad, I’m not right,” and so on. I’m still working on it. A handful of months around the wrong children has undone a lot of work. I started taking him to Little Sandbox, a tech club in Liverpool, because he loves tech and because I know the people who run it don’t allow bullying at all. I also know such clubs tend to become heavily populated by children who are different from the norm, and that is exactly what he needs. The difference between him at school, and him at Sandbox, is indescribable. He talks non-stop, he laughs. He communicates with the other kids. He comes home and talks for a week about everything that happened there. He remembers that there are so many things he’s good at. Most crucially, he remembers that it’s okay to be who he is.
So my third piece of advice is: find a place where the children you support can belong. Create that place, if you must. Provide a social experience, as regularly as is comfortable for them, in which they can thrive. And try not to be too prescriptive about what form that comfort takes; if they don’t want to engage with the other kids, but want to attend and perhaps passively bask in the acceptance, let them. As long as they aren’t hurting anyone, and they’re enjoying the level of social engagement they’re getting, it’s a positive thing. It’s okay for them to socialise in ways allistic people might not consider socialising; things will evolve over time, or they won’t. As long as they feel the benefit, it’s a positive experience. Don’t tarnish it with preconceived notions about what social interaction “should” look like. Find a place where they can belong, and let them belong there.
Back to my eldest. Despite their wild intelligence, their creativity, their scientific bent – they struggle to handle school. Too many people, too much listening to dry chatter from a teacher, which is hard for them with auditory processing difficulties. Too much pressure to be who they aren’t. I struggled in the same way, but there was no one to tell me it was okay to be me, and no one to help me look for ways to study and pass my GCSEs in a way that worked for me. If I were watching this speech, I would struggle to turn the noises coming from my mouth into language, and it would be hard to keep my attention on it for the full duration of the speech.
We struggle on. I’m better suited to teaching people how to do things than to teaching them facts. But we approach it together, as an exasperating challenge we need to meet in order to achieve the life my eldest wants to live. Number four: be the child’s teammate, be on their side. Don’t turn into part of the establishment they find it important to gel with. We are fighting together against the difficulties they’re facing; it isn’t me fighting them or them fighting me. It’s like that time-honoured piece of advice about relationships: remember it’s the two of you against the problem, not each of you against the other. We’re not perfect, we’re not infallible. But we’re doing our best.
And that brings me onto what the goal should be. Because in our society, doing your best has become inexplicably confused with being the best. Let me be clear on this: being the best simply isn’t in everyone’s wheelhouse. Very few of us will ever be the best at anything – the number of people who will be, or are, the best at something is so small as to be a statistical outlier which should not have been counted. And why be the best? Because being the best is profitable. And so the goal for most disabled kids – including autistic kids – is to get them into work. Study hard, get a job, make money. Become more sociable, get a job, make money. Be more palatable to a potential boss, get a job, make money.
At what point does the goal become, be happier? Be more comfortable? Enjoy your life? At what point do we reassess the way we treat children and adults alike, and adjust the goals to where everyone can be, if not wildly ecstatic all the time, at least content with the life they’ve built? Or, if you want to dial it back a step, actively involved in building the life they want to live?
Autistic people are often robbed of the autonomy to make our own decisions, to build our own lives. Sometimes we aren’t allowed to live where we want to, to spend our money the way we want, to eat what we want or dress how we want. And some of that, I’ll grant you, can be necessary. I have spoken to fellow autistic people who have said to me, “I don’t understand money, someone else has to manage my finances for me.” I’ve struggled with the concept and the execution of managing money my entire adult life and I’ve had to put measures in place to help me manage that, myself.
But wherever and whenever possible, autonomy should be fostered. If not completely independent autonomy, then autonomy with assistance. And that starts with children. Some things have to be done – sure. Do them in the way that is most comfortable, or least uncomfortable, to the child. My youngest won’t take showers, so he takes baths. It’s harder for me physically than it would be if he took showers, so we find a compromise. I use my perching stool to perch by the bath; he doesn’t dawdle. We get the unpleasantries over with and then he can play while I stay within earshot (but withdraw to a more comfortable place). If I accidentally buy clothes for my kids (I do the clothes-shopping as neither is comfortable in clothing shops) that are uncomfortable to them for whatever reason, then oh well. A swing and a miss. Either we take it back for a refund or we add it to my fabric scraps. You win some, you lose some; when you force your child into clothes that overload their senses, everybody loses. Let it go.
And the same goes for arbitrary social standards. Take, for example, the concept of eye contact. It is a profoundly allistic notion that eye contact is necessary for communication, for honesty, for all sorts of made-up reasons. It is a notion that baffles me to this day, and one that was rammed down my throat so incessantly as a child that, as an adult, I don’t know what to do with it. If I’m in a professional setting, I count, in my head. Eye contact for a count of five, then break it for a count of ten, then repeat. I used to – before autistic burnout got me – do this for hours during meetings with my boss or with others around the office. Count to five, count to ten, count to five again. I don’t know where I got those numbers from; I do know it’s exhausting, and distracting, and distressing on a low but pervasive level. Count, don’t mess it up. Another weight is added to the overloaded scale. It doesn’t matter how small or big it is; the point is that it shouldn’t be there at all.
Make eye contact when you apologise. Look at me when I’m talking to you. You have to look in my eyes so I can tell if you’re lying.
It got to me to a point where even when I’m with my support team, when I commit myself to NOT making eye contact so I can focus on what’s being said… I worry that I’m avoiding eye contact the wrong way. I can only relax about this when I’m around other autistic people, who don’t mind if I stare at my cat for half an hour, then actually look at them for a while and then start drawing or making something while we talk.
Consider, when you try to teach a child someone, whether or not it’s actually important. Eye contact is not important. Respecting others is important, and valuing themselves and other people. Everything else, in terms of social rules, is nonsense. It isn’t important that your child learn to fit into an outdated idea of what society is; what’s important is that your child feel supported to be who they are, to live the way that feels comfortable and natural to them.
So that is my fifth piece of advice for you: separate what we were taught was important from what’s actually important. Stop preparing your child to be a cog in the machine, and start preparing your child to be a kind, compassionate, happy human being.
Listen: it does me no good to have a miserable child. If my child became the most productive, the richest, the best at producing capital, but was sad inside, or constrained, or felt out of place wherever they went – that is a failure to me, as a parent, as someone supporting autistic children. The idea is not to produce the perfect automaton, capable of following orders and of earning money. Similarly, the goal is not to make children behave like perfect little adults without ever stepping a foot out of place.
Until my child was flagged as probably autistic, and began the journey that would see them diagnosed some time later, I was fully into repressing my autistic traits. I made eye contact, in my shonky count-of-five, count-of-ten way. I hid my stims, only biting my nails openly because I couldn’t manage otherwise. I acted like I was okay with everything, and I allowed myself to be put in situations that were exploitative and abusive because when I was a child, expressing my needs as an autistic individual was strictly against the rules. On the rare occasion that I allowed myself to think of myself as autistic at all, it was in that sick, “but I’m not one of THOSE autistics” way.
I’m here to tell you that the strain of doing that is untenable, and the damage done to the individual is painful, harrowing, and sometimes impossible to undo completely. It’s been 5 years since I started my research and discovered all the information nobody ever thought to share with me when I was a child, or that wasn’t readily available due to lack of internet and unwillingness to publish autistic writers’ work on autism. I still worry. I still stop myself from behaving in the ways that are natural to me. When upset, I isolate myself and carefully investigate whether I’m allowed to be upset, instead of allowing myself to be upset. I’ve been taught that it is unseemly for me to be upset. When I’m crying, I hide myself; it baffles me when someone wants to be there for me while I’m sad or angry. And so, being taught not to be overtly autistic knocked vital support structures out from under me before I even realised they should be there.
Similarly, it’s easy for me to disregard my own opinions. Only in the last two or three years have I learned to put faith in my emotions and thoughts. The most vital support structure that was taken from me was my own support, my own commitment to standing up for myself, believing myself, trusting myself.
So my final piece of advice to you is: talk to the child. Listen to them. If they are non-verbal, find other ways for them to communicate. BSL is a good option many of my friends endorse. Find a text-to-speech app and let them type what they’re saying. If their auditory processing isn’t coping with spoken language, type to them. Resist the urge to try and make them seem more allistic; facilitate their ability to comfortably communicate. And when they do communicate, listen.
That isn’t limited to words; meltdowns and shutdowns are a form of communication. Stimming – happy or unhappy – is, too. Learn the subtle non-verbal language of autistic individuals as you would learn the subtle non-verbal language of anyone you’re close to. And heed it.
I’m not saying that everything the child says can be taken as the final word on what’ll happen or what needs to be done. My kids don’t like tidying their rooms, that doesn’t mean they don’t have to. It means we work together, to find a way for things to get done without anyone being miserable. Maybe we relax the standards a bit, although I think you’d struggle to find more relaxed standards for housekeeping than mine. Maybe we agree on half-hour slots of activity, interspersed with 20-minute periods of rest. Maybe we decide it needs to be done today and so we have to push through it, put loud music on and just get it sorted. Sometimes I have to say, “I know you don’t like this, but it has to happen and here is why.”
But by talking it through with them and listening to their input, I’m teaching them three valuable things:
- How to work with someone towards a common goal,
- How to solve a complex problem with a social component,
And most crucially of all,
- That their opinions, their feelings and their thoughts are worthy of being listened to, that their contributions should not and will not be ignored, and that they are valuable members of the microsociety that is our household.
For the allistics among the audience, I hope I’ve been able to give a valuable insight in how supporting autistic children should hopefully work, in my jumbled way. For my fellow autistic folks, I hope I’ve been able to represent us with some fairness and decency. I wish you all the best, thank you.
And I’ll say this again, and again, and again, and probably until everyone’s utterly sick of hearing it, but thanks again to the organisers for inviting me to speak and attend. It took 16 hours all told to travel to Swansea and back; it will take some time to recover physically, on account of being a cripple. But there’s been an incredibly uplifting effect mentally and emotionally, and I can honestly say it was more than worth the effort.