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My Gender is Jeanette - by Jeanette Purkis

My Gender is Jeanette - by Jeanette Purkis

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‘I am not a she but a me’ - Coming out as a non-binary in the autism community

When I was a kid the most frequent ‘insult’ school bullies would level at me was ‘Are you a boy or a girl?’ This confused me, firstly because I didn’t see why that was supposed to be an insult and secondly because clearly I was neither. I have always known on some level that the two options for gender that I was aware of did not apply well to me. I was expected to be female and I knew there were various qualities and activities which were supposed to come with femininity but I didn’t feel any wish to do those things. Any relative who gave me a doll for Christmas would be disappointed when I either left it in the box and ignored it or on one occasion did some kind of unintended conceptual artwork by writing interesting words on its creepy plastic head. For many years into adulthood I firmly believed that all other women felt the same way as me and that those who wore stiletto heels and makeup must have somehow been brainwashed into doing so!

I have always felt that I occupy the space of a different gender – something I often thought of as a third gender which doesn’t fit neatly into the traditional ‘male’ or ‘female’ sorts of expression. My choices in dress sense and hair and other external expressions of gender, change every few years. I spent my teens and early twenties with shaved short hair, wearing check shirts and work-boots. Bus drivers used to call me ‘mate’. In the last few years my outward expression has been about colour and sparkle and quirkiness. My best ‘being me’ clothes are turn-up jeans, art, literature or Pride-themed t-shirts and sneakers with big jewellery and a coloured wig or a hat - a beanie in winter and a baseball cap in summer. Even with these quite dramatic changes in how I express my sense of my own gender I am not at all questioning or unsure of my identity. I know exactly who I am. My gender is ‘Jeanette’.

Despite knowing who I am, it took me until earlier this year to ‘come out’ as what I now understand to be non-binary gender. I have received some great support and encouragement from many of my autistic friends, particularly those who are also part of the trans and gender diverse community. A few months ago I announced my wish to be referred to as they / them rather than she / her. Despite having had female gendered pronouns all my life - 43 years - they never really sat comfortably in my mind. I am not a she, I am a me.

I posted this on social media shortly after coming out: I recently publicly affirmed and declared that I identify as being of non-binary gender and that I prefer being referred to as ‘them / they’ rather than as ‘she / her.’ It has been incredibly liberating and opening new possibilities to my understanding of myself and others. It makes me feel sort of young, like I am discovering more about myself than I knew was there. I am wondering why it took me so long to get to this point of identifying and understanding. There is a lot of me wandering contented and happy through life tempered by occasional worry and uncertainty.

Because I have known that I am non-binary for a while, I thought coming out would be almost like a formality. I didn’t anticipate what it would mean. Since then my identity has blossomed into something I didn’t know was there. I feel like I have walked into the light for the first time and seen everything in its true and beautiful form.

It hasn’t all been pleasant. One of my friends who is trans told me shortly after I came out ‘You will find out who is your friend and who isn’t and you will be surprised.’ She was absolutely right. I have discovered allies amongst some of those who I was most afraid would ostracise me. Despite the vast majority of people being supportive or at least not bothered much one way or the other, I have also had some very upsetting trolling. Being trolled by a few notable individuals in the autism community was extremely hurtful and confusing. I still don’t understand why people who on the one hand are working towards inclusion, can at the same time be so bigoted and exclusionary. I have never had trouble respecting and welcoming others. Gender identity and sexuality have always been complete non-issues for me. Discovering that there are people whose view of me changed dramatically as soon as I formalised something which has been true all my life - my gender - I was very sad indeed. I was no different before I came out than I am now. I guess I don’t really understand bigotry. Thankfully so many of my friends and colleagues have been very welcoming and supportive.

I think that the best thing in terms of my autism advocacy work and my coming out has the the large and growing number of autistic people who follow me online who have started to question and understand their own gender identity after finding out about my journey. It appears that what I say about gender is relatable to other gender diverse autistic people. There are actually a huge number of us. Both anecdotally and in research evidence, autistic people have significantly higher rates of being gender diverse than our allistic peers.

I have never regretted coming out and doubt I ever will. It has been an absolute rebirth, a time of discovery and I am liking my unfolding identity. I feel so much myself and this seems to grow every day. Being ‘out’ is everything I could have hoped for and more. A friend said to me how lovely it was to see me growing into my identity and I know what she meant. I’m just starting to write the first chapter of the metaphorical book that is this part of my journey. I’m looking forward to seeing what the other chapters contain.

Website, blog and books

Website: www.jeanettepurkis.com

Blog: jeanettepurkis.wordpress.com

Latest book: The Parents’ Practical Guide to Resilience for Preteens and Teenagers on the Autism Spectrum (co-authored with Dr Emma Goodall) Jessica Kingsley Publishers 2018

Don’t travel like a Neurotypical…travel like an Aspie by Katie Oswald

Don’t travel like a Neurotypical…travel like an Aspie by Katie Oswald

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A couple years ago I was chatting with a friend, telling her about the challenges and joys of my experiences living in different countries and cultures. After a few minutes, her expression turned to one of awe and admiration and she said, “Wow! I wish I could travel like you do. I couldn’t handle it.”This got me thinking about why I can travel and why others feel they can’t. Sure, in some cases it is lack of time and money. But not always. I isolated the cases that were not about those constraints and ran them back and forth in my mind from every possible angle. Was it that they never tried to travel and just assume they can’t handle it? Sometimes, but again, not always. I remained with a handful of cases where an Aspie has traveled one or more times, knows they would love to be able to travel more, but simply feels it will be too overwhelming.

Now, as someone who dreads leaving the house for things as simple as grocery shopping or coffee with a friend, I can relate to these feelings. When I’m not traveling, I am comfortable leaving the house a few times a week for a few hours at a time. I am not special or a superwoman, so I still couldn’t quite put my finger on why I could manage to travel to 17 countries on 6 continents while fellow Aspies were terrified at the very idea.

Then one day it hit me.

I don’t travel like a neurotypical. I travel like an Aspie!

The problem I found is that neurotypical travel often doesn’t work for Aspies, so Aspies think travel is an unattainable goal. The media and travel blogs tell us that travel has to be exciting, nonstop action, going to dance clubs and staying in hostel dorm rooms to meet other travelers. But it doesn’t have to be all of those things. You can find your own travel style and it can be whatever you want it to be.

Travel can be enjoyable for Aspies!

My first experience abroad was in Russia. I quickly realized that I had almost no control over what was happening, which made me unbearably anxious. The only thing that kept me calm enough to avoid a meltdown was the vodka and strong Russian beer. I expected to endure this heightened anxiety for the entire trip. Then on day 2 something inexplicable happened.

I was having dinner with fellow students on the patio of a nice restaurant, watching the sun dip lower and lower on the horizon. Suddenly a calm feeling came over me and filled my entire body. I realized that it didn’t matter that I couldn’t control everything. I could accept the times when things were out of my control, let life happen, and enjoy my time in Russia. I knew if I didn’t, I would have a miserable experience.

Of course, I experienced intense anxiety and the occasional meltdown during those few months, but I enjoyed it enough to know that I wanted to travel more. A lot more!

After that trip I did a home stay with a Russian family, took a ship across the Drake Passage to Antarctica, and lived for two years in a remote village in Uganda. During all of these trips, there were moments of intense panic, anxiety, nausea, and the occasional meltdown. But I would do it all again. Travel made me a stronger person, a more open and accepting person, and it has changed my world view in ways that were unimaginable.

So how can you make travel work for you? I learned by trial and error, but you have access to what I’ve learned along the way. Here are some primary factors to consider.

Where will you go?

Go somewhere relaxing and not overwhelming, especially if you are a first time traveler. Go slow! You don’t have to do nonstop site seeing and you can take whole days off if you want. I do! I never do any activities the day of my flight. I take that day to get settled in and rested up from the flight. And I often take a half or whole day off to stay inside and read if I am traveling for more than four days.

Study maps ahead of time. If you have a day of activities planned and you study your route in detail the night before, you can identify “safe places” along your route. Many cities have parks and nature areas in the midst of the urban chaos that you can take advantage of to prevent or recover from a meltdown.

Time and Money

We all have constraints on how we can travel. I have a lot of time and not much money because I work for myself, so I travel on a budget. You might have a good full-time job and have little time and more money. We won’t cover budgeting in this article, but just know that you shouldn’t sacrifice personal comfort due to these constraints.

For example, if you have a lot of time and not much money, think twice before you decide to spend two weeks in a hostel dorm room. You may be better off spending three days in a nice hotel or a week in a budget hotel.

Transportation

You don’t have to fly or drive when you travel if you don’t want to. Trains are a very relaxing option and are available in most countries around the world and you can travel anywhere in the world by ship. There are cruises that take you across oceans and you can book a room on a freight ship, too.

Road trips allow you to go at your own pace if you do like to drive. I don’t like to drive, but still enjoy the occasional road trip to small and medium sized cities. You can take country roads when possible and stop when you feel like it, without feeling rushed. When you get to your destination, you don’t have to worry about getting around on public transportation.

Lodging and Accommodation

There are countless websites for booking the right hotel, like booking.com, Trivago, hotels.com, and many others.

For those of us on a budget, there are lots of options, too! My personal favorite is TrustedHousesitters. If you love animals, this is a great option. You can stay for free at someone’s home and take care of their pets while they are out of town.

There are also plenty of sharing sites that allow you to camp in someone’s yard for a small fee, rent an RV for less than $10 a day, or sleep on someone’s couch for free. A private room on Airbnb can still be an affordable option in some cases, and there are plenty of other interesting options like farm stays, monasteries, and capsule hotels.

Safety

By far, the most important part of travel for Aspies (or anyone, really) is safety. As Aspies, we have unique challenges. Doing everything you can to prevent meltdowns is key and this means being in tune with your body and remembering to pay attention for triggers. When it’s not possible to prevent a meltdown, there are still things you can do to improve the outcome.

Learn about the culture before you go, specifically how they view and understand autism. Store embassy and emergency numbers in your phone. If you have a meltdown, you may need to call someone for support. Carry a card or document that explains autism and has emergency contact numbers in case you become nonverbal and need someone to make a phone call on your behalf. Make sure you have copies in English and any other languages spoken in the countries where you will be traveling. I have had public meltdowns in countries that have no understanding of autism and I didn’t need these, but it’s good to be prepared.

These are the basics to start thinking about as you consider your next trip. Over the next year, I hope to interview and feature autism-friendly travel companies on the Autistic Travel Coach and make presentations to other travel companies on the importance of becoming autism friendly. I plan to feature more of this content in addition to the existing travel content.

I hope you will join me on this adventure and have plenty of your own, as well! If you would like to have a free 30-minute coaching call, or just chat, please contact me at AutisticTravelCoach@gmail.com. I would love to hear from you about what type of content you would like to see on the blog at https://autistictravelcoach.com

 

Take Off the Mask, Dare to Relax — Katherine Uher

Take Off the Mask, Dare to Relax — Katherine Uher

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Last year while discussing my Master’s thesis (How Autistic People Experience Humanistic Therapy) a classmate asked me, “How much of autism is co-created?” What she meant was, how much of our traits are pre-wired in and how much are simply a response to a world that often doesn’t make room for us. I was surprised by her question because it is one that many people off the spectrum wouldn’t think to ask, but one which has come up a lot in my study. …

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Thinking Differently About Difference by Maura Campbell

Thinking Differently About Difference by Maura Campbell

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My son’s name is Darragh. He’s awesome. He is, in fact, the most beautiful boy in the world. This has been independently verified – by both his grannies. Darragh is also autistic. It’s as much a part of him as his blue eyes and blond curls.

I love how he sees the world. He has his own names for things. We refer to this as ‘Cracking the Darragh Code’. It wasn’t too hard to figure out that ‘Gurget’ meant Rugrats or that ‘Cessity’ meant The Jungle Book. ‘Gwah’ was a bit more of a challenge. We spent two weeks scouring the internet before we figured out that ‘Gwah’ meant Rudolph the Red Nosed Reindeer and the Island of Misfit Toys.

One day Darragh handed me his iPad and asked for ‘Bum Bums’. I said: “I love you with every fibre of my being, son, I really do, but there is no way on God’s green earth I’m typing ‘Bum Bums’ into a search engine…. It turned out he wanted The Fimbles.

People ask us what Darragh’s ‘special ability’ is. I tell them he can eat his own body weight in pizza. My husband tells them he can fly.

Like I say, he’s awesome.

Not everyone sees Darragh the way we do. When we’re out as a family, we get stared at - a lot - and we have to run the gauntlet of intrusive questions. Some people can’t seem to see past the noise-cancelling headphones, the chewy hanging round his neck or the assistance dog standing beside him.

Like the guy who marched straight up to me in a shop and, without a word of introduction, said “What’s wrong with him?”.

Darragh was right there. He may not use conventional speech, but he knows when people are talking about him – his ears aren’t painted on. There was an awkward silence. The man continued to gawp at Darragh, obviously feeling he was entitled to know what my son’s disability was and how it might justify a service dog.

I answered, as calmly as I could, “There’s nothing wrong with him. He’s wonderful.”

I would share with you what I was actually thinking but I strongly suspect it would contravene BBC standards. Autism is a neurological condition. Put simply, Darragh’s brain is wired differently to most people. Being left-handed is also a neurological condition. Hand preference is controlled by the wiring of the brain.

Left-handed people inhabit a world that is set up for the right-handed and are just expected to fit into it. In the past, left-handed kids were forced to write with their right-hand, because that was what was considered ‘normal’. Historically, being left-handed has had negative connotations - gauche, clumsy, unlucky. In medieval times, lefties were even thought to be in league with the devil. (Though that would perhaps explain the phenomenal success of Justin Bieber.)

Another group of people who’ve traditionally had a bad rep is redheads, who make up a similar proportion of the world’s population as autistics. In the Middle Ages, red hair was considered a sign of witchcraft. The ancient Greeks believed that when they died, redheads would turn into vampires. My point is that societal views of what constitutes ‘normal’ can adapt over time.

Autism is thought of by most people as solely a list of deficits. It’s even confused with mental illness, in a similar way to how homosexuality was once seen as a mental disorder. And let’s remember that homosexuality was only declassified as a mental illness by the World Health Organisation in the early nineties.

Words like ‘symptoms’, ‘diagnosis’ and ‘risk’ are used. This is referred to as the medical model of autism. The social model, on the other hand, sees autism as a naturally occurring phenomenon, as opposed to a medical disorder.

The neurodiversity movement, which emerged in the 1990s, is an attempt to reframe autism as a set of neurological differences – a different way of being human, if you like. A well-known phrase within the autism community is that autistics are ‘different, not less’.

Of course, autism is not without its challenges – anxiety, sensory sensitivities, problems with self-organisation, social burnout, for example. But, as with other types of difference, often the problem really stems from other people’s attitudes and prejudices.

There are many myths about autism – the stereotype of a cold, emotionless automaton who doesn’t feel empathy, has no sense of humour and is a tech genius.

This unremittingly negative narrative about autism has fuelled a lucrative industry in snake oil salesmen pedalling so-called ‘cures’.

Unhelpful theories have linked autism to, among other things: breastfeeding, not breastfeeding, caesarean sections, circumcision, older dads, refrigerator mothers, pesticides, vinyl floors, traffic emissions, bacon, broccoli and the Internet.

Most recently, an Indian professor has claimed it’s caused by women wearing jeans. Well, it is genetic…

I personally believe that the positives outweigh the negatives. These often include honesty, directness, loyalty, a strong sense of natural justice, excellent memory, expertise in intense interests, originality, creativity and independent thinking. There are definite advantages to being able to see the world through different eyes.

Darragh also has a learning disability.

Another difference. And one which is arguably even further back in the queue when it comes to acceptance and equality.

It is the last bastion of political incorrectness.

People who would never think to use race, sexual orientation or physical disability as a form of abuse or ridicule find themselves instead using pejorative language linked to intelligence. In most cases, I honestly don’t believe they’re even conscious they’re being disrespectful to people with a learning disability.

If you believe yourself to be a nice person, and you’ve always done something, it can be hard to accept it might not be a nice thing. It’s a form of unconscious bias.

Let me give you an example of the equality double standard which I believe has been hiding in plain sight.

In order to do so, I’m going to use a well-known phrase, but I’m going to change one word in it because it’s a word I just can’t bring myself to say. The phrase is: ‘the noodle in the woodpile’.

I’ve chosen to use the word ‘noodle’ because I know the word I’m substituting it for is hurtful to people of colour. I also know that most people find that word distasteful. Which is why, thankfully, we don’t hear it very often any more, apart from as a form of cultural re-appropriation.

For exactly the same reason, I don’t use the phrase ‘the village idiot’ because I know it can be hurtful to people with an intellectual disability and those of us who care for them.

‘Idiot’, ‘imbecile’ and ‘moron’ were, for many decades, the clinical terms used in the classification of what we today refer to as learning disability or intellectual disability.

The term ‘moron’ was originally conceived by a prominent American eugenicist.

‘Idiot’ happens to be the term that translates directly across to my son’s particular diagnosis.

The clinical use of ‘idiot’, ‘imbecile’ and ‘moron’ was discontinued in the 1970s when they had become corrupted by being used as terms of abuse.
They were replaced by mental retardation, until ‘retarded’ became corrupted, and then with ‘mentally handicapped’, with its origins in the idea of begging ‘cap in hand’. It met a similar fate.

Unfortunately, I see and hear that phrase, ‘the village idiot’, and the labels ‘idiot’, ‘imbecile’ and ‘moron’ all the time. I saw them used several times to criticise Donald Trump for mocking a physically disabled journalist, without a hint of irony.

I would love us to let the ‘the village idiot’ retire, in the same way that we’ve stopped having ‘noodles’ in ‘woodpiles’.

I get that people don’t like their language being policed, I really do.

But freedom of speech is actually about someone’s right to express their opinions and ideas, free from state interference, as opposed to being challenged by their peers on the particular words they choose in order to do that.

It’s the difference between, on the one hand, respecting someone’s right to hold the opinion that they shouldn’t have to share a changing room with gay people and, on the other, challenging them for saying they don’t want to change in front of ‘faggots’.

Because, thank goodness, that’s another word which is just not okay anymore.

I also get that people sometimes use words like ‘idiot’ to mean ‘fool’. If that’s the case, why not just use the word ‘fool’. If that’s what you actually mean, why not say it?

I don’t regard it as an infringement of my civil liberties that there are words we have collectively decided are best avoided, like the N-word or ‘faggot’. I see it as a positive choice.

Freedom of speech is, after all, a qualified right, not an absolute one, and it carries with it corresponding responsibilities.

Nowadays, the term ‘special needs’ is starting to become corrupted, as is ‘autistic’ and ‘on the spectrum’. We can either continue to cycle through replacement euphemisms or – here’s a thought – we can choose to be more respectful to people who are different.

We can choose to stop treating IQ or conformity with a perceived norm as the measure of a human being’s worth.

It’s not an entirely new idea. Through an online campaign, over three quarters of a million people have pledged to eliminate the demeaning use of the word ‘retarded’ and to promote the acceptance and inclusion of people with intellectual disabilities.

Let’s bring back respect. Let’s bring back kind.

If, in the heat of an argument, you’re searching for a word to criticise someone who’s being racist or homophobic or a misogynist, don’t fight fire with fire. Ridicule their opinions or ideas; don’t make it about their IQ or neurology.

Let’s not cherry-pick the minority groups whose human dignity we want to defend.

Darragh and I share more than curly hair and blue eyes. I’m autistic as well.

People ask me what my ‘special ability’ is. I tell them I have x-ray vision. (Nice belly button ring, sir.)

My son and I are being the people we were born to be.

We are different, not less.