April is Autism Awareness month so I’m here to talk to you about autism and what it means to me to be autistic.
First up, what is autism? Autism is a lifelong neurological (not psychological) developmental condition that affects approximately one in 100 people worldwide and there are around 700,000 autistic adults and children in the UK. Neurological as opposed to psychological means that you are either born with Autism or you’re not; it’s not a condition you can spontaneously develop later in life (like depression for example), it’s not something you can grow out of or cure and it’s DEFINITELY not something you can get from vaccines (regardless of what you read on some dodgy medical website). It usually affects how people communicate or interact with the world, common traits include difficulties with social interaction and communication as well as issues with cognitive skills and hypersensitivity to sights, sounds, smells etc.
The main thing to understand is that every autistic person is different and unique, they will all have different struggles and just because you’ve heard or read that autistic people act a certain way, doesn’t mean that the person you’re interacting with will behave in that manner. Remember: ‘when you’ve met one autistic person… you’ve met ONE autistic person.’
Don’t get stuck on those stereotypical traits you’ve ‘heard’ autistic people have. No, we are not ALL mathematical geniuses or savants (I only just scraped a C on my maths GCSE) but yes some of us will have incredibly specialized knowledge in certain areas (ask me about: art, architecture, mythology, abnormal psychology, serial killers or fashion and get ready for an on the spot 30 minute TED talk) but don’t expect us ALL to be amazing at numbers or good at remembering dates, phone numbers etc. Everyone is different and just like neurotypical people excel at different things, so do autistic people.
I was diagnosed with Aspergers or ‘High Functioning Autism’ as it was also known at the time, in 2015. I also have suspected ADHD and struggle daily with depression and anxiety (just for some added spiciness I guess since apparently being autistic wasn’t enough). For the most part being autistic doesn’t really affect my day to day life all that much. I do admittedly struggle with making phone calls sometimes (to be fair this is a common theme among Millennials in general) but it’s not something I cannot physically do, I just don’t particularly like it. I’m fortunate that being able to read people is something I don’t have a lot of problems with although I think that comes from a lifetime of observing to better try and fit in. I am admittedly fairly oblivious about certain social signals especially in regards to flirting and romance (safe to say I’m basically useless at being able to tell when someone is interested in me). Hypersensitivity is probably my biggest obstacle relating to my autism, one minute I can be fine, then with no warning certain smells, sights or sounds can become overwhelming to the point where I start to shut down or spiral into a panic attack.
I can usually spot the signs now so if I’m out and it happens I’ll just pop my wireless headphones in or put sunglasses on until I’ve calmed down. It usually passes within a few minutes and if it doesn’t then I can always remove myself from the situation and get some fresh air. I can’t control this by the way, sometimes I’ll be in a busy shop, restaurant or cafe and I’m absolutely fine and then other times something seemingly innocuous can set off a bout of hypersensitivity. Imagine you’re in a cafe and someone is collecting plates and cups or there’s a baby banging a toy repeatedly on a table, I know that these are perfectly normal and everyday sounds and I know that they can’t be helped, but my ears do this weird thing where they amplify the sounds to the point where it feels like someone is driving an ice pick into my skull. It’s hard to explain unless you’ve experienced it but it can be excruciating.
Supermarkets, shopping centres, airports and train stations are usually the most likely to trigger hypersensitivity for me, but they can all be managed with headphones and sunglasses. I always carry a green sunflower lanyard with me from the Hidden Disabilities Sunflower Scheme. My lanyard also has an ‘I am autistic’ card and my autism alert card attached in case I’m ever out somewhere and need assistance. The main thing it has written on it is ‘please don’t touch me’ since I really don’t like being touched by people and I know that when someone is in distress it’s an automatic reaction to try and comfort or calm the person. I haven’t had to use it yet and I hope I never will but I carry it with me anyway just in case. Mine isn’t specifically a mask exemption card, it just says ‘I am autistic’ I still wear masks during each lockdown but I am aware that not everyone can wear masks due to medical reasons. Not every green sunflower lanyard means mask exemption, people wear them for lots of different reasons so if you see somebody wearing one, it could be for any number of things.
I was 24 when I was diagnosed which is actually quite young. Girls/women are more likely to be diagnosed later in life, usually while seeking diagnosis for their own children. I was already going through treatment for depression, anxiety and self harm and I’m lucky that my CBT therapist spotted the signs of autism and talked to my psychiatrist about putting me through the full autism diagnostic process. When I was first asked if I knew what autism was my reply was something along the lines of ‘yeah but I thought only boys could have that?!’ which shows how little I actually knew about autism and one of the main misconceptions I’d picked up from pop culture. It’s funny because before it was suggested to me that I might be autistic, it had honestly NEVER occurred to me that ‘that’ might be what was different about me.
Looking back it’s astonishing that we didn’t see the signs sooner. My parents travelled a lot during my early years and they took me everywhere with them. Because I never had a proper nursery or reception experience my mum taught me to read when I was three during our travels so that by the time I started school aged four, I could already read and write. Reading has been my favourite past time ever since and I was forever being told off for reading ahead in class or for taking a book out into the playground during break time. My dad is autistic as well (we didn’t know this until I got my diagnosis) and one of our favourite ‘car games’ on the way to/from school was naming international capital cities, longest rivers, mountain ranges, oceans etc. I got off easier when my mum picked me up, we’d just listen to Yazoo, Bowie and OMD cassettes and sing-a-long all the way home instead.
The signs were there, I was a clumsy child, forever tripping over and walking into things. I was over emotional at times and then at others, closed off and emotionlessly logical. I had an uncanny memory for song lyrics, general knowledge and other useless facts (trust me, you definitely want ME on your pub quiz team). I was obsessed with Greek mythology and classical art and architecture and my idea of a fun Saturday as a child was getting to spend the day at home watching the original Star Wars trilogy on VHS. I was a bit of a nerd and a geek, and to be fair I still am. I’d race through certain tasks or puzzles at school and then struggle with others that were seemingly easy, this drove my teachers mad and it was frustrating for me as well because I couldn’t help it. I was an incredibly picky eater, not because I wouldn’t try new things but because I simply didn’t like the taste/consistency of certain foods. At home being a picky eater was manageable but at school I was often forced to eat foods I hated. So if you can picture a seven-year-old crying her eyes out as a teacher forces her to eat chunks of fish filled with bones in front of her entire class at lunchtime then you’ll get an idea of what it was like growing up undiagnosed.
Growing up I was aware that I was different but I couldn’t pinpoint how or why exactly. I was bullied extensively at primary and secondary school due to never quite being able to ‘fit in’. I could play the part sometimes and blend in well enough but there was always something ‘other’ about me that apparently the other children (and some of the teachers) took offense to. When I was nine a boy pushed my face into the playground so hard that my nose broke (it’s actually still crooked to this day) because he said I was weird. When I was thirteen my entire year group (along with a couple of other years) took it upon themselves to follow me around singing song lyrics about crying and calling me a ‘crybaby’ because I was a clumsy child/teen and I’d often accidentally hurt myself and end up (surprise, surprise) crying with the pain from whatever injury I’d sustained (SO many broken fingers and toes). When I was seventeen I ended up having a nervous breakdown and dropped out of sixth form because of the bullying and because I could no longer meet the strict academic expectations of my teachers who often told me that I’d never amount to anything if I chose to pursue a career in the arts like I wanted. It was A LOT to go through at such a young age and I’m still dealing with the effects of it all over a decade later.
I’m not telling you any of this for sympathy, I just want to lay it all out because unfortunately a lot of my experiences growing up seem to gel with what I’ve heard from other autistic women and some men about their own childhoods and teens. Bullying from children and teachers seems to be the most common occurrence and I’ve yet to meet an autistic adult who didn’t have a seriously hard time growing up even if they were diagnosed at a young age. If you’re sitting there thinking ‘sure but everyone has a rough time growing up’ ask yourself why that is exactly and how it’s somehow ‘okay’ just because it’s considered ‘normal’. Autistic adults have an average life expectancy of just 36 years. This isn’t due to any underlying health concerns or comorbidities found along with their autism, it’s because most of them end up killing themselves. Suicide rates for autistic adults are three times higher than they are for the general population. Yes it’s hard being a person, but I’d wager that it’s even harder being autistic or neurodivergent.
It can also be incredibly frustrating when you’ve spent most of your life undiagnosed and unaware that you are autistic. It’s often thought that boys are four times more likely to be autistic than girls but recent studies have shown that actually, boys are just more likely to be diagnosed than girls. Girls and women tend to fly under the radar for so long as their special interests and obsessions are seen as more ‘typical’ than those of boys. For example, if a young girl is obsessed with horses or ballet or dolls, it wouldn’t be seen as unusual compared to if she were obsessed with WWII artillery or steam trains. Social peculiarities in girls are often subconsciously corrected at a young age or girls simply learn to mimic their peers to better fit in, while autistic boys are less likely to have their unusual interests or behaviours ‘corrected’. It wasn’t until I left primary school that the differences really started to show; my interests varied widely from my classmates and as anyone who has been through secondary school will know, any signs of individuality are a sure-fire way to get yourself picked on. So imagine not quite knowing how to hide your weirdness or not even being fully aware that you are weird, you’re just trying to live your life but everyone constantly picks on you for it. Heaps of fun.
It’s only in the last decade or so that research into autism in girls has become more common, slowly working to try and undo some of the cultural bias affecting autistic children, namely that just as many girls are likely to be autistic as boys. Many doctors still don’t know what to look for in signs of autism in girls, which is why most girls don’t receive a diagnosis until they’ve already reached adulthood or many of them are incorrectly diagnosed with other disorders concerning emotional regulation such as Borderline Personality Disorder (before receiving my autism diagnosis my psychiatrist wanted to diagnose me with BPD despite me not ticking many of the boxes). I went to school with a few boys who had Asperger’s Diagnosis and while I do remember other kids picking on them for their social oddities, I also remember how someone would always step in and say ‘yeah but they’ve got aspergers’ which would often stop the teasing or bullying. So while we can’t fix the fact that children will always find ways to be cruel, having that diagnosis definitely could have come in handy as a child. It also highlights the importance of teaching children about neurodiversity from a young age so that they grow up with a good awareness of it, both for themselves and others.
Nowadays the use of Aspergers as a diagnostic label is dying off due to it’s negative links to Nazi history (Hans Asperger colluded with the Nazi regime, including sending children to the Spiegelgrund clinic which participated in the euthanasia program). The use of ‘high versus low functioning’ labels is also thankfully dying off and many people now refer to themselves simply as autistic regardless of where exactly they fall on the autism spectrum (and it’s important to remember that it IS a spectrum). In practice ‘high functioning’ labels are used to deny support and ‘low functioning’ labels are used to deny agency, both are damaging. Regardless of which end of the spectrum a diagnosis sits, that person is still autistic. Today autistic people also mostly prefer identity first language so if you’re sitting there reading all of this and thinking it should be ‘person with autism’ not ‘autistic person’ then… you’re wrong, sorry!
The autistic community prefers identity first language as while we are more than our various conditions, disorders or disabilities, we also don’t have to be ashamed of them. You wouldn’t necessarily say a ‘person with diabetes’ or a ‘child with asthma’ you’d say they were diabetic or asthmatic, and autism is the same. So we say autistic instead of someone ‘with autism’. It’s the same when people refer to ‘Mild Autism’ like you can only have a little bit of autism. ‘Mild Autism’ implies the existence of ‘Spicy Autism’ and ‘Flamin’ Hot Autism’ so unless you’re a bag of tortilla chips or hot sauce, it’s kind of a weird label to use. Maybe I’ll start telling people that I have ‘Cool Ranch Autism’ or ‘Lightly Salted Autism’.
As an autistic person one of the most frustrating things is that most of the discourse on autism relates to parents of autistic children rather than actually autistic people. If you google ‘autistic support’ you’re hit with floods of resources for parents, carers and teachers but if you’re autistic and you seek help what do you find? You often find that you’re seen as the problem that needs fixing and that autistic people should be ‘fixed’ and made to blend in rather than society being willing to make (often small) accommodations and allowances to help autistic people better navigate the world. I’m not a parent and I can only imagine some of the struggles faced by parents raising autistic kids, but ask yourself what it must be like for those children as well. The world is a scary and confusing enough place to grow up in without the added difficulties that come with being neurodivergent. It’s also important to remember that autistic children grow up to be autistic adults, the autism doesn’t just magically go away when they turn eighteen.
If you’re sitting there thinking ‘well I don’t know anyone who is autistic’ you might be surprised at just how many autistic people you DO know. A lot of them might not actually be aware that they are autistic and even if they do, they might not have revealed it to anyone. It can be difficult ‘coming out’ to people as autistic. Disclosing an autism diagnosis is up to each individual as they see fit but sometimes it can be more trouble than it’s worth. I have been in conversation with someone and they’ve been speaking to me normally but as soon as I casually disclose my autism diagnosis their whole manner changes. Like a switch has been flicked, they suddenly talk to me in a bizarrely patronizing way as though speaking to a small child or an animal. It’s bewildering behaviour but I know that it stems from the many common misconceptions about autism that pervade pop culture and the media as well as the way society treats people with disabilities in general.
Because autism is a disability whether or not we always choose to see it that way. We are constantly bombarded with allistic opinions on how we think and why we’re the way that we are and what we should do to improve, too few people actually bother to take the time to get an autistic view on things. Think of it like this, if you were attending a panel for international women’s day you’d probably be very confused if the panel was made up entirely of men, right? So imagine a bunch of people who have never experienced autism, deciding what autistic people think and want. It doesn’t make much sense, does it?
So what can YOU do to help the autistic people in your life? Listen to autistic voices rather than non-autistic ‘experts’. Whether it’s a friend or family member, a student or an employee, take time to talk to them about some of the things they deal with as an autistic person. You might be shocked at some of the stuff they go through each day just to ‘function’ as well as the simple things you could do to help them better manage everything. As well as teaching your kids about disabilities teach them about autism and neurodiversity as well so that they grow up knowing just how varied and different people can be. Children are naturally curious so if you’re out and you see an autistic person stimming (hand flapping, verbal stims/noises, rocking etc) and your child questions the behaviour, explain it to them. Stims are a completely normal trait for many autistic people and they often can’t help these self-regulating behaviours during times of stress or strong emotion.
If you meet an autistic person and they struggle to make eye contact or refuse to shake your hand, try not not to take it too personally. Eye contact and touching are things that many autistic people struggle with. This is something I’ve managed to overcome and I can shake hands just fine, although I have also been told that I sometimes maintain TOO much eye contact and people think I’m about to murder them or something, so I guess I can’t win either way. Tact is something that some autistic people can lack, but again it’s not personal. Autistic people often have a frankness that can be both disarming and alarming to those not used to it, please try not to take it too personally, they probably don’t mean to come across like that. By all means call them out on it if you wish, but try to be patient and understanding as well.
If you want to help promote autism awareness and acceptance this April (and beyond), do us a favour and try to stay away from using the puzzle piece symbol. It may not seem overly problematic but the use of the puzzle piece in relation to autism suggests that autistic people are like a puzzle to be solved, that they are ‘missing a piece’ or are somehow lesser. Nowadays autistic people prefer to use the rainbow infinity loop aka the symbol for ‘Neurodivergence’ as it’s a lot more inclusive and fun. Also be careful which autism charities you promote or support, some of them raise money to fund a ‘cure’ for autism and newsflash… there is no cure! Because it’s not a disease.
The main takeaway is this: Try to help us, not control us. There is no amount of discipline or punishment or reward that will magically ‘overcome’ autistic behaviours, and if you try to push it that’s ABA (Applied Behaviour Analysis) which can be incredibly harmful for autistic children and adults alike. Work to try and understand the behaviour and then learn to deal with it or adapt to help the autistic person deal with it. Whether you’re a parent of an autistic child or autistic yourself, you can help to correct the many misconceptions that surround autism. Together we can shift the paradigm in regards to how society treats autistic individuals by making a positive change in how autism is viewed. Instead of seeing autism as some terrible disorder filled with limitations, try to see it as an opportunity to look at the world through a different lens. Autistic minds have already changed the world for the better in so many ways, and with your help and support they can continue to do great things.
Glossary for some of the terms used:
Neurodivergent – basically anyone who isn’t ‘normal’ in a neurological sense. Neurodivergence can include Autism, ADHD, ADD, Dyslexia, Dyspraxia, Dyscalculia, Personality Disorders and Schizophrenia.
Neurotypical – someone who doesn’t have any outstanding neurological peculiarities, so a nice normal regular person really.
Neurodiversity – the growing movement highlighting and often celebrating neurological differences instead of hiding or being ashamed of them. Some neurotypical people might expect autistic people to hide their differences but the neurodiversity movement is all about being proud of who you are regardless of neurological differences.
Allistic – this is another term for neurotypical, it’s essentially just the opposite of autistic.
List of notable autistic individuals or those with suspected autism/neurodivergence:
- STEM: Albert Einstein, Stephen Hawking, Nikola Tesla, Thomas Edison, Charles Darwin, Bill Gates, Mark Zuckerberg, Temple Grandin, Carl Jung, Paul Dirac, Steve Jobs, Isaac Newton, Barbara McClintock, Carl Sagan, Ada Lovelace, Benjamin Franklin, Henry Cavendish, Alan Turing, Alexander Graham Bell, Marie Curie.
- Literature: Jane Austen, Virginia Woolf, Hans Christian Andersen, Lewis Carrol, Arthur Conan-Doyle, Emily Dickinson, James Joyce, W. B. Yeats, Franz Kafka, George Orwell, Mark Twain, H. G. Wells, H. P. Lovecraft, Emily Bronte, Isaac Asimov, Friedrich Nietzsche, George Bernard Shaw, Sylvia Plath, Shirley Jackson.
- Music: Wolfgang Amadeus Mozart, Ludwig van Beethoven, Gary Numan, Aphex Twin, David Byrne, Glenn Gould, Ladyhawke, Keith Moon, Bob Dylan, Courtney Love, Michael Jackson, Susan Boyle, James Taylor, Eminem, Robbie Williams.
- Film/TV: Dan Aykroyd, Tim Burton, Daryl Hannah, Steven Spielberg, Stanley Kubrick, Paddy Considine, Anthony Hopkins, Jerry Seinfeld, Woody Allen, Alfred Hitchcock, Dan Harmon, Jim Henson, Hannah Gadsby, Michael Palin.
- Art: Leonardo da Vinci, Michelangelo, Andy Warhol, Willem van Genk, Stephen Wiltshire, Vincent van Gogh.
Jade Boylan is a Manx artist and illustrator, she works full time from home as a freelance designer as well as running her online shop www.candydollclub.com she is also a member of the Isle of Man Arts Council and the board of Culture Vannin.
IG @jade_boylanart www.jadeboylan.com