Asexuality BC (Before Cake)

A First Hand History of Early Online Asexuality

To celebrate Asexual Awareness Week 2017, I’ve assembled this edited version of my notes and slides for the 2012 WorldPride Asexual Conference in London, where I was one of the ‘headline guests’.

This talk on the history of the online asexual movement opened the conference, which corresponded with Asexuality.org‘s 10th anniversary year.

The WorldPride Asexual Conference poster: Sunday July 8th 2012. Confirmed Speakers: David Jay, founder of the Asexual Visibility and Education Network, Nat Titman, founder of the Ace Community on LiveJournal. Admission is free with lunch & cake provided. Talks, workshops & panel discussions, featurin international community leaders and a screening of the (A)Sexual Documentary. London Southbank University.
WorldPride Asexual Conference flyer, 2012

Please note that this talk is now itself 5 years old, so descriptions of the ‘current situation’ have become their own part of community history.

Also, much of what I’d planned to say had to be edited on the fly due to unforeseen time pressures, so some of what’s included below is being shared for the first time.

The Ghost of Asexuality Past

Hello Asexual Community! Back in April 2002 I created the Asexuality LiveJournal community, which was probably the first generally ‘sex positive’ asexual discussion forum, pre-dating the AVEN forums by over a month.

A couple of months after that I was invited to get involved with AVEN and went on to write their comprehensive asexuality Frequently Asked Questions, ‘Questions Asked by Asexual and Questioning People’, which still forms the basis of the current General and Relationship FAQs.

My involvement with the community dwindled after the first couple of years, and so I’ve been asked to give a historical perspective on the formation of the current asexual community and movement. So think of me as ‘the ghost of asexuality past’.

My Obligatory Asexual Life Story

The white design on a purple t-shirt, top: 'Caution!', middle: A fire symbol in a warning triangle, bottom:
My WorldPride 2012 t-shirt, supplied by AVEN

Before I talk about that though, I should explain a little about myself. I’m queer, trans, genderqueer, neurodivergent and of course asexual. I was involved with both queer and transgender communities online and in person before I managed to get involved with any asexual community – mainly because back in the 1990s both of those communities were considerably easier to find!

When I was growing up, I didn’t realise I was queer or know I was trans, but I was acutely aware that there was something different about me. As I entered my teens, it became obvious that everyone else was experiencing sexual attraction and going through flirtation and dating rituals that seemed completely alien to me.

In my early teens I assumed that I was a ‘late bloomer’, but by my middle teens I’d realised that things probably weren’t going to change and I saw myself as broken and believed that I’d never be able to be in love or have the type of happy life I’d been raised to expect.

Understandably, I didn’t have a very positive outlook about this and didn’t have much self esteem as a result, but that changed at age 16 when I realised (thanks to Ellen DeGeneres) that I did have romantic feelings towards others, and that these were what society called queer.

Identifying as queer made a huge difference to me – here was a movement that was about celebrating being different, not fitting into society, maybe not even fitting properly into any other sexuality labels, but finding pride and positivity in that. This was just the type of perspective I needed at that point in my life.

Five Things Only 90s Aces Will Understand

When I was 17, I got access to the Internet and tried to find others like me. I quickly found late 1990s online LGB, queer, transgender and even genderqueer communities, but I struggled to find others who didn’t experience sexual attraction.

Attempts to research this produced information about celibacy or abstinence (intentionally choosing not to have sex) and impotence or sexual dysfunction, but very little about people who were able to enjoy sexual stimulation, but didn’t have the drive to share that with other people.

DIY Label – Conceptualise Your Own Asexuality

One of the reasons why there was so little out there – and why what was out there was so difficult to find – was that asexuality wasn’t really a defined thing.

Unlike today, you didn’t stumble across other asexuals on every social website you visited and you certainly wouldn’t hear about the orientation from your local LGBT group or your school’s sex education lessons – well, not unless you were being taught about spider-plants or amoebas!

Everyone who was talking about being asexual back then had effectively invented the concept of human asexuality.

You’d have to have stumbled across the word in your biology classes, or come across it in some other context, and have identified with it so strongly that you’d thought to apply it to yourself and then not been put off when you entered this in a search engine and found nothing relevant.

My Doctor Is Asexual

Grace and the Eighth Doctor kiss in the 1996 TV Movie.

I probably first heard asexuality applied to a person through being involved in online Doctor Who fandom. The 1996 TV movie had just happened and fandom debates were still rife about whether the Doctor kissing someone was acceptable given this had never been shown in the previous 33 years of the show’s history.

As such “My Doctor is asexual” was a commonly heard sentiment.

Of course, most of these fans argued that this was because he was an alien and so not interested in human beings. And a Doctor Who novel published that year even explained how the Doctor’s race reproduced without having sex.

Ableist Assumptions

Before I found my place in queer communities of various kinds, and a decade before I received any kind of neurodivergent diagnosis, I had a strong feeling of being different and unable to be like others, no matter how hard I tried.

This feeling led me to read about other types of difference and marginalisation, and to feel an affinity with others who were supposedly “broken” by society’s standards. This led me to 1990s disability rights websites and to article after article railing against the ableist assumption that disabled people were ‘asexual’.

Androgynous Associations

I also came across ‘asexual’ used negatively in queer and genderqueer writing. Typically the word would be used to critique media portrayals for only allowing the gender nonconformity associated with queer sexualities into popular culture once all sexual context had been completely removed.

Boy George posing with a tea cup

I most commonly recall this mentioned in relation to Boy George’s 1980s public persona who claimed “I would rather have a nice cup of tea than sex”, while leading a very different life in private.

Asexual? Is That Like Toby?

Another notable androgynous person often associated with the word ‘asexual’ was a self-described neuter person using the name Toby, who had appeared on the American talk show Sally Jesse Raphael in 1989.

Toby talked about being androgynous, nonsexual and having an externally sexless, intersex body.

This appearance made such an impact on audiences that people were still mixing up the concepts of being neuter, androgynous, intersex and asexual over ten years later, to the point where this was still a regular assumption that late 90s, early 2000s androgynous genderqueer people had to combat. It’s still talked about today and even inspired a 1995 punk song.

In my email archives, I found that AVEN had even received email from someone trying to track Toby down in 2002.

This wasn’t so surprising as, rather than being described as intersex, Toby was often referred to in literature as asexual – literally being without a sex – although I don’t believe Toby ever referred to xeirself that way.

Asexualism: The Genetics but Not the Sex. A final type of gender category is asexuality. [Link to transcript]
An extract from Sexuality Now: Embracing Diversity (Dr Janell Carroll, 2004 and 2006) [Image transcript]
Toby’s story was published as a case study in a 2004 book called ‘Sexuality Now: Embracing Diversity’ under the heading An Asexual Person’ describing ‘Asexualism’ as a gender category meaning ‘lack of maleness or femaleness’.

Thankfully the visibility work of AVEN meant that a side note in the 2006 second edition mentions that asexuality ‘often refers to the lack of sexual desire’ and later editions switch to solely using asexual in the sense we use today.

A 2017 side note on Toby’s identity:

A few months after this 2012 Asexual WorldPride Conference talk, I finally got to see the Sally Jesse Raphael “Toby” interview, thanks to YouTube account BetamaxBooty, and immediately recognised that xe was Autistic Rights pioneer and co-founder of Autism Network International (ANI), Jim Sinclair, who features heavily in the 2000 “Autreat” short documentary film:

I had just recently been formally diagnosed as autistic myself, and remembered being strongly affected and influenced by Jim’s Don’t Mourn For Us in my earliest days on the internet, 15 years before. But I had never realised that Jim was also the near mythical nonbinary figure that so many described to me as genderqueer community folklaw.

Jim also coined the phrase “self-narrating zoo exhibit” (and watching the Sally Jesse Raphael interview with its amazingly invasive audience Q&A, it’s not hard to see why!) and prominently spoke out against ‘person first’ language.

When I attended the UK Autscape conference a month after the Asexual Conference, many people I met had no problem understanding my gender neutral nonbinary identity or my asexuality, because they knew Jim. Although some were surprised that I was trans rather than intersex. This is where I’d first discovered, via Wikipedia, that in 1997, xe “remain[ed] openly and proudly neuter, both physically and socially.”

Then while reading the 2012 ASAN essay collection ‘Loud Hands: Autistic People Speaking‘, I was astounded to discover that the very first Autistic-run autism conference stream in November 1995 had included a panel on asexuality.

Jim Sinclair is a true pioneer of so many of the communities and identities I was a part of, and influenced so many of us, whether we knew it or not.

2017 Side Note Ends.

Asexual in the 90s – Not Very Specific

So, most uses of ‘asexual’ as a description of a person readily available in the 1990s weren’t talking about lacking sexual attraction but all romance, sexuality and sometimes even gender.

The term was often associated with being socially or literally neuter and often confused with androgyny or intersexuality.

Sometimes it was used interchangeably with celibacy or associated with problematic assumptions of sexual inadequacy.

The most common factor though was that it was rarely seen as a word people used to explain their own identity.

Human Asexuals in The Year 2000

Things began to change in 2000 though, as people who had claimed the label asexual for themselves started to find each other and talk about their shared identity on the internet.

And I’m inclined to pin this development on the rise of the superior Google search engine.

The Earliest Asexual Rallying Point

The earliest article that I recognise as claiming and defining our community’s meaning of asexuality is Zoe O’Reilly’s 1997 article ‘My life as an amoeba’ for the StarNet Dispatches webzine, which (somewhat facetiously) compared a ‘lack of sexuality’ with the ‘trend’ towards coming out, after Ellen DeGeneres’s 1997 Time Magazine cover interview: “Yep, I’m Gay”.

Screenshot from a websize 'My life as an amoeba' by Zoe O'Reilly.
Zoe O’Reilly, the first ‘Out and proud’ asexual? StarNet Dispatches, May 1997

With Ellen’s coming out and the new trend towards ‘outing’ and the overall hipness involved, there’s been a lot of press dedicated to gays, bisexuals and most other sexually-oriented groups. But there is one group continuously overlooked:

The asexual.

I’m out and proud to be asexual. My people are a definite minority group who wish to be recognized like all the others. We want a colored ribbon, a national holiday, coupons for fast food. We want the world to know that we are out there.

School science books make the barest mention of our kind and even then stick to the single-celled variety. As far as the rest of the world is concerned, asexual organisms with more than one cell don’t exist. That makes it quite difficult to come to terms with your lack of sexuality.

‘My life as an amoeba’ received a handful of comments when first published, but started attracting a stream of long joyful responses from fellow asexuals as Google became more popular in 1999 and 2000.

A 2017 side note about the first article to articulate asexual identity:

Since 2012, I’ve tracked down an earlier article on asexuality that I wasn’t aware of at the time. I now believe that Jim Sinclair was also the first person to self-describe the current meaning of asexuality, and to express true asexual pride, in an article ‘Personal Definitions of Sexuality’, published online in 1997 and written for a class project in spring 1987:

I define myself as asexual, because if I am asexual I have all the equipment I need. I define my expressions of sensuality, eros, and love as nonsexual, because if they are nonsexual they are not rendered invalid by my asexuality. I define my love as authentic, because I define my humanity as complete and unimpaired.

However, this never came up in any of my numerous Google searches at that time.

2017 Side Note Ends.

Life With The Amoebas

The 'Doctor Fun' webcomic, 8th July 2005, two amoebas sit on a sofa watching TV, one reaches towards the other saying 'Actually, it's not supposed to be an arm or a leg.' The caption below reads 'The confusion of amoeba dating'. Copyright David Farley, 2005.
One might reasonably call the comments on Zoe’s amoeba article the first adhoc online asexual discussion community, given that, for a while, it was the only place asexuals could find and talk to each other.

Before cake, before we were aces, we were the amoebas

Cutesy references to asexuals as amoebas were common in late 90s/early 2000s pre-AVEN asexual communities, and arguably a humorous reaction to the rather tedious criticism from detractors that none of us understood basic biology(!).

It also likely inspired the first asexuality focused discussion mailing list, Haven For The Human Amoeba, created on Yahoo Groups in 2000 – especially likely given that the group creator linked to Zoe’s article early on.

A November 2002 screenshot of the 'Haven for the Human Amoeba' Yahoo! Group, in the category 'Abstinence'. Description: Welcome to Yahoo's only club for asexual people and their friends. Thanks to everyone who has posted for keeping this place alive and informative.' At least 4 of the 5 most recent posts displayed are spam links to porn sites.
By November 2002, Haven for the Human Amoeba was mostly porn spam – good luck with that one, spambots!

‘Human Asexuality’ (It’s A Thing, Google It!)

As well as amoeba imagery, it was also common to specifically refer to human asexuality (possibly because you could Google that and actually find information).

In fact, I understand that AVEN was almost called HAVEN, the Human Asexuality Visibility and Education Network, presumably a backronym from the mailing list community name that preceded it – but DJ was talked out of this by a friend.

Thankfully the community later discovered that word ‘asexuality’ was also easy to google, without requiring any awkward species-first wording!

Early Online Asexual Communities

Even with our shared label and a means for people using that label to find each other, there was still no neat definition of asexuality and very little agreement about what being ‘asexual’ meant.

There were a growing collection of online spaces and sites, but they each defined asexuality in different ways, assuming that they defined it at all.

Rather than using the lens of sexual orientation to frame their experiences, most asexual mailing lists and discussion communities of that era simply worked around the experience of not having sex, for various different reasons.

At this time, there seemed to be three distinct varieties of people talking about identifying as asexual:

Nonsexuals: Lets Not Have Sex Together!

First there were sites and mailing lists that acted as support groups for people who didn’t have sex and were looking for kindred spirits.

These sites tended to simply express the fact that some people didn’t feel the need to have sex and were happy with this, or explained the experience of being a ‘human asexual’ and asked if anyone else felt the same way, or had advice to help solve problems.

The comments on Zoe’s article and the Haven For The Human Amoeba are prime examples here.

Anti-Sexual Spaces: Everyone Else Is The Worst

Next there were anti-sexual communities focused around the word ‘asexual’, which were dominated by angry critiques of the sexualised nature of society and the ‘cheap and meaningless’ sex that other people were having.

The beginnings of the ‘Asexuals’ LiveJournal community stand as a prime example of this.

A 2002 LiveJournal screenshot showing the community 'Asexuals'.
Asexuals We Are: “For folks who think sex is terribly overrated and pointless unless of course it has meaning”, December 2001

This is a community for folks who think sex is terribly overrated and pointless unless of course it has meaning. Come to think of it there are tons of reasons why you might be ASEXUAL. Sex is constantly shoved down the throats by the media. What once was a beautiful and powerful thing, is now cheapened because some brilliant demon thought it would be smart to use it to sell their product. Because of this, nobody takes it seriously. Sex is no longer about expressing anything. Fight back.

Of course, there’s perhaps a natural tendency for those who don’t experience sexual attraction to increasingly resent the pressure to be sexual in our society, and to define themselves in opposition to this. Especially without any asexual community accepting them for who they are.

However, many of the loudest voices in these communities wouldn’t even fit today’s accepted definition of ‘asexual’ as they saw asexuality as a choice, describing it as a kind of self-enforced radical celibacy.

It’s wasn’t an asexual movement that we’d recognise today, but a kind of ‘proto-asexuality’ that many of us tried to fit ourselves within.

Prescriptivist Asexuality: Libidoists Need Not Apply

Finally there were the more elitist and exclusive asexuals who only wished to mix with those who were entirely nonsexual and had never experienced the smallest hint of a libido, nor ever experimented with sex in any way, even on their own.

The self-declared ‘Official Asexuality Society’ set itself up with a very strict definition of what one needed to be and do in order to become a member

[Content note on the screenshot below for discrimination, intolerance, childhood abuse, sexual assault and implied ableism]

Screenshot of an early 2000s website, The Official Asexual Society, page 'The Test': 'If you have any doubts wether or you you are REALLY asexual, cut and paste this test into an e-mail file, answer the questions and e-mail it to; webmaster...', the set of 15 frankly horrible questions ask about whether you felt different in childhood and if you've ever been abused, sexually assaulted, masturbased or enjoyed sex in any way.
The pre-AVEN ‘Official’ Asexual Society’s entrance exam, with all its unpleasant implications

Their rules required that potential members fill in a questionnaire designed to expose any ‘libidoists’ or ‘solosexuals’ who might be trying to sneak into their exclusive asexual club.

Even though most asexuals of the era weren’t members of The Society, their McCarthyesque purity standards served to strengthen taboos in the early community that led many of us to fear mentioning any of the ways in which we might not quite fit into community norms.

Descriptivist Asexuality: Here’s What We Have In Common

Documenting all of these different trends and factions were asexuals that sought to explain asexuality without enforcing any firm view of what the label should mean, just what members of the online communities meant when they said they were asexual.

A prime example of this was the site asexuality.net, created circa early 2002 by L.J. who self-described as:

a 21 year old asexual male, who has always felt out of place, because of his lack of a sex drive.  After many years of making dirty sex jokes, pretending to hit on female friends, and doing whatever I could to “fit in,” I finally came out to myself and a few close friends.  Right now, I have no plan on ever being romantically linked with anyone and am very happy in my asexuality and being with myself.

WorldPride 009.png
Asexuality.net’s ‘What is Asexuality?’ page, early 2002

Upon speaking with many people online who have decided to consider themselves asexual, I’ve spotted many different contributing factors for the decision. These are just a few:

  1. General lack of interest in sex with either gender, even when there is a romantic attraction.
  2. Physical impairment that makes sex unpleasant or impossible.
  3. Belief that sex and relationships are not in their best interests in the present and future.
  4. An overall lack of desire for sex or romantic relationships with anyone.

This being the case, it’s safe to say that in the present time, not too many people will see eye to eye on exactly what asexuality is.

2017 Side Note on an Asexual Alternate History

Not included in my talk, barring a mention in the screenshot of Asexuality.net, was the first asexual dating site (or ‘Introduction Service’), AsexualPals.com, which still exists, almost completely unchanged! (Although the forums are ‘temporarily offline’.)

The pay-to-join site was created around the same time as AVEN’s first articles were published on DJ’s college webspace and offers a fascinating peek into an alternate asexual community that never was. One that used imagery so cis-heteronormative that it was almost indistinguishable from a conservative Christian dating service.

Screenshot from a 2001 meeting service: Asexual Pals – The furthest it’s possible to get from queer asexuality

At least it was still purple, right?!

Asexual Pals was notable for having the most concise pre-AVEN definition of asexuality:

Asexual?
Any man or woman who (a) has low to nonexistent sex drive (b) lack sexual functions due to biological origins or (c) lack sexual or romantic attraction to either gender.

…albeit one that excluded me just by starting “Any man or woman who…”

2017 Side Note Ends.

For more early asexual websites and communities, see the August 2002 AVEN links page. DJ and I were quite late to the party!

All Labelled Up With Nowhere To Go

While I was certain that there were many others like me within these groups, I can’t say I really felt at home within any of them.

I wasn’t entirely nonsexual. I saw myself as having a kind of sexuality, just not one that was directed towards sexual attraction.

I’d had romantic relationships before, mostly nonsexual ones, but I had enjoyed sex with one of my more persuasive partners and found it quite good fun, if not worth the fuss that everyone else seemed to make about it.

Of course I had not the smallest chance of being allowed through the well-guarded gates of the ‘Official Asexuality Society’ due to my past history of enjoying sex and sexuality.

And I wasn’t even slightly anti-sexual, in fact by this point I was the president of my university’s LGBT society and coordinator of a student sexuality helpline. I spent a good portion of my spare time supporting other people to come out, find community and feel comfortable with sexual feelings they’d learnt to think of as shameful.

Queering Things Up – Building An Inclusive Asexuality

Because of that background and experience, I tended to see asexuality in terms of sexual orientation, rather than nonsexuality or anti-sexuality.

In my eyes, asexuality was just another way to be queer, and I wouldn’t want to see any queer community that defined itself by criticising the sexuality of others, or which imposed strict gatekeeping and policing of who got to call themself ‘queer’.

I’d always looked for and organised queer spaces that told people it was OK to be different, welcomed them into the fold and celebrated their sexualities and genders – and what they chose to (safely and consentingly) do with them.

So that’s what I hoped to find when I went looking for other asexual people online – a broadly sex positive, inclusive, celebratory asexual community that welcomed in anyone who felt an affinity with asexuality, and wanted to build something positive and constructive out of that, rather than focusing critique on the sexualities of others.

And, as I couldn’t find this, I made my own…

A Positive Alternative – LiveJournal Asexuality

In April 2002, aged 22, I set up the ‘Asexuality’ community on LiveJournal, which described itself as focused on those “with no or very little sexual attraction to others”.

WorldPride 010.png
The Livejournal Asexuality Community’s profile as it looked in November 2002

The community quickly attracted a small but extremely enthusiastic group of members. These were mainly lurkers on other communities, who identified so strongly with the idea of asexuality that they’d long put up with that highly antisexual tone in the hope of coming across someone else they related to.

A LiveJournal post titled
My first post welcoming people to LiveJournal Asexuality, April 2002.

It seemed that positive, constructive asexual discussion was an incredibly refreshing idea to people who were used to a generally negative and reactionary tone of discussion.

Although this meant that the community’s beginning was equally reactionary – in opposition to the tone of other asexual communities

Of course, not everyone immediately understood the difference between the two communities, partly because there were a good mixture of people on LJ Asexuals who ignored the tone of the community profile. Here’s an early discussion of that difference (I’m not sure where I got the idea of ‘classical’ asexuality though!)

Enter David Jay and AVEN

A few weeks later, I was contacted by David Jay, a fellow asexual who’d created a website called AVEN, the Asexual Visibility and Education Network, which was in the process of moving to the prime ‘asexuality.org’ domain.

DJ was another queer asexual who had a similar background of looking for other asexuals through college LGBT societies and queer communities.

Email from David Jay, Subject Asexual Bebop, Date, 23rd of June 2002: Hey, I'm e-mailing because I saw you're posts on livejournal (can't respond, unfortunately, because of their pay-for-an-account BS). Good to see another asexual queer out there!! I go to school in the states, but I've been working on getting an asexual compenent of the queer community there. I also run www.asexuality.org (I just put the forum up, if you want to come and check it out. I'm trying to get something of a posting population..) It's encouraging to see how much of an interest there is in asexuality. I just put asexuality.org up, so it's not registered to any search engines yet and already I'm getting upwards of 200 hits a day. I like you're notion of sex-positive asexuality. I'd say that I'm more sex-neutral. People should be allowed to be consensually sexual away way they want. It's not about sex being good or bad, at the end of the day it just doesn't matter that much. It's all the social implications of sexuality that are complicated, and that people get caught up in. Sex itself is just another activity. A vehicle for lots of stuff, but not the big deal that everyone makes it out to be. Anyway, hope all's well... -DJ
Asexual Bebop: David Jay gets in touch about the new AVEN forum – 23rd June 2002 (before email client spell check)

While the AVEN homepage of the time claimed to be an FAQ, the first version of the site read more as one person saying “I exist, and here are some of my theories about what asexuality must be.”

And what theories those where! DJ had hit upon a similar (but catchier) definition of an asexual as ‘A person who does not experience sexual attraction’, explained explicitly as a sexual orientation, and compared with homosexuality, heterosexuality, and most closely with bisexuality.

WorldPride 013.png
AVEN’s 2002 homepage

I found this synchronicity between our approaches exciting and inspiring, so I pored over the materials he’d already written for the website and sent him a long email in response.

A Meeting of Minds

Over the next month, we had a lengthy email exchange, discussing the implications of asexuality as an orientation and my sex positive approach (DJ saw himself as more ‘sex neutral’ and was less reactionary to competing asexual communities – something that the definitive home of online Asexuality needed to be).

I provided critique of some of his models of asexuality, particularly linear continuums from gay to straight and sexual to asexual; something that I was inherently suspicious of as a genderqueer activist from an online community that saw gender as more of an ever-shifting hypersphere of infinite possibilities than a straight line from female to male.

A diagram of an inverted triangle with 'Homosexual' on the left, 'Bisexual' in the middle and 'Heterosexual' at the right. Below this, under 'Bisexual' is 'Asexual', forming the bottom point of the triangle. DJ writes 'As sexual attraction plays less and less of a role in someone's life, who they are and are not attracted to becomes less and less relevant. There is less and less of a difference between being homosexual and being heterosexual, until eventually an entirely new category is needed. Asexuality. Hence the asexual symbol:' below this is the unlabelled inverted triangle, now with the bottom third shaded in black.
The origins of AVEN’s logo – Having never been part of an asexual community, DJ naively assumed that all grey-area asexuals would be somewhat bi

Eventually DJ invited me on board to help develop the AVEN site content and the new discussion forums that had come with the asexuality.org web hosting plan.

Screenshot circa late 2002, 'AVEN: Asexual Visibility and Education Network' discussion forums with a large definition of 'Asexual' at the top and numerous active forums below. The site is white boxes on a lilac background.
The AVEN forums in August 2002, when there were 300 posts by 41 members

I was excited about the idea of building a home for asexuality with a catchy one word URL – no subdirectories or tildas for us! It felt like we were starting something big, like we could be the ‘Amazon.com’ of asexuality(!)

Defining the Shape of Asexuality

These days people tend to think that I’m speaking figuratively when I say “I wrote the FAQ on asexuality”.

Screenshot circa late 2002, early 2003. 'AVEN: Asexual Visibility and Education Network' the article is titled 'Questions Asked by Asexual and Questioning People' [link to the Archive.org copy]
My ‘Questions Asked by Asexual and Questioning People’ big FAQ, as it looked in 2003, complete with ‘Doubts and Fears’ section [wiki version here]
And while I included all the questions that asexual and questioning people did frequently ask when finding asexual communities. I also included everything that I thought that people needed to ask but would be too afraid to talk about.

Looking through my email archive from the summer of 2002, it’s quite clear that my FAQ was really a thinly disguised manifesto for positive, inclusive and self-defining asexuality.

This wasn’t surprising – in the 90s Raphael Carter‘s Androgyny RAQ had been one of the most important and affirming web resources I’d found.

I found email exchanges from trans and genderqueer friends who were proofreading drafts of my work.

Some of their feedback on the more conservative early drafts read less like editorial notes and more like cheerleading at the affirmative tone I was lacing through the answers, and encouragement to break the community taboos even further and write the FAQ that would’ve helped my younger self – and often theirs too.

Can We Say That?!

To highlight just how different the early asexual community was from the present day; in one exchange I found, that really shocked me, DJ queries whether I can really say that some asexuals enjoy having sex, as he isn’t aware of any asexual people who do so.

I reply to say that I’m definitely aware of asexuals who do, but so strong was the taboo against asexuals having sex at the time that I didn’t have the courage to admit that I was one of them!

The list of questions includes: 'I enjoy being sexual with my loving partner but I've never really felt driven to have sex with anyone else, could I be asexual?', 'I identify as [straight/gay/bi/something else] but I still fit your definition of asexuality, am I wrong?' and 'I think asexuality is inherently queer, do you agree?'
More questions from my big FAQ
Of course, today asexuality is firmly accepted as an orientation rather than a behaviour and many sexually active people happily identify as asexual, ace spectrum, grey-A or demisexual and talk about this within the community without challenge.

AVEN community censuses now even record the proportion of online asexual community members who are sexually active – something that would’ve been unthinkably radical back in my day.

We Believe You. You’re Not Broken, Just Different

While AVEN’s front page gave a snappy one line orientation-based definition of asexuality:

Asexual: A person who does not experience sexual attraction.

AVEN was always more inclusive that this implied.

DJ’s conception of asexuality had an area of ‘low intensity’ sexual attraction that was still firmly accepted as fully asexual, and it was represented by the large black area, right there in the site’s logo.

Screenshot circa early 2003, 'AVEN: Asexual Visibility and Education Network' discussion forums with a large definition of 'Asexual' at the top and numerous active forums below. The site is now a large white banner with information links, a definition and mission statement. Below it are even more active discussion forums, now with lilac background.
The AVEN forums in February 2003, when there were 2,229 posts and 174 users

And the links above and below the headline ‘Asexual’ definition led to my big FAQ of Questions Asked by Asexual and Questioning People (wiki version here) which answered almost every self-doubting question with an affirmative message that encouraged self-definition and left space for other types of asexual experiences to be welcomed into our community and to expand the boundaries of what ‘asexual’ meant.

Take the first question, for example:

“Am I asexual?”

You can’t be told the answer to this question. Only you can decide which label accurately describes your experience and feels comfortable for you.

You might find it useful to read this FAQ and the rest of the material on this site. Remember that the definition of asexuality is “No or low sexual attraction to other people”. Of course, just because you fit this definition doesn’t mean you have to identify as asexual. That’s your decision.

My answers always referred to experiences that were later called ‘grey-area’ asexual, or grey-A (a reference to the gradient that was soon added to DJ’s asexuality diagram) as fully asexual, for example:

“I’ve only really been attracted to about three people my entire life but when I was I wanted to have sex with them, would I be sexual or asexual?”

That’s up to you to decide. I think most people would agree that being attracted to very few people would qualify as a ‘low sexual intensity’. It’s likely that sexuality plays a relatively small role in your life, experiencing no attraction toward almost everyone you meet will give you a lot in common with other asexuals.

There was a similarly welcoming and positive tone in the early forum community. Most new members would express joy at finding other people like them, and were welcomed and supported by a communities of others, glad to no longer be the only one.

Love Wins

Unsurprisingly, AVEN’s positive, inclusive and welcoming tone, its catchy and easily understandable orientation-based definition of asexuality, it’s lack of entrance restrictions or pay-to-join policy, and it’s authoritative-looking domain name all contributed to the site and its forum community gradually winning out over competing negative, elitist or simply vague models of asexuality.

A screenshot of AVEN's forums now with a gradient in the logo and an announcement that 'AVEN 2.0 is Here!!'
The AVEN forums in June 2005, when there were 200,498 posts and 4075 registered users

Soon AVEN had more members than any other asexual community, with most members of those communities also joining our fold, and after a year or two, the forum community gained so many active members that it was difficult for anyone to follow all the threads.

At the Frontiers of Discovery

Sadly the text of all our earliest forums discussions appear to have been lost in the upgrade to ‘AVEN 2.0’ – if you’re setting up a similar online community, find yourself an archivist now!

My memory is that the early AVEN forum community was an exciting place to be for an amateur sexuality and gender theorist such as myself.

It felt like we were on the frontiers of theory, deconstructing the entire basis of relationships and intimacy from a unique perspective.

We were exploring how to explain experiences that fell into the ‘grey area’ between sexuality and asexuality, and between friendship and partnership. Exploring the possibilities of nonsexual and nonromantic relationships, of alternative models of intimacy.

I was particularly excited about discussing the possibilities of intimate asexual relationships with sexual people in polyamorous relationships with multiple partners.

I remember enthusiastically sharing my experiences and the many ideas and possibilities I’d learned from the genderqueer, bi and queer communities that I was involved with both in person and online.

And then going to back to those spaces and sharing asexual theory there – and finding many other asexuals already there, ones who had never found a word for this experience that had been such a huge and unspoken part of their lives.

The earliest example of this was the talk on asexuality I gave at the UK Bi community event BiCon 2002 (and have given versions of many more times since over the years).

A 2017 Side Note on the first asexual conference session:

While my BiCon talk was a very early asexual conference presentation, as discussed in side notes above, the earliest conference session on self-defined asexuality was held during the Autism Network International (ANI) conference in November 1995, the precursor to Autreat, organised by Donna Williams, Kathy Grant and Jim Sinclair.

2017 Side Note Ends.

A Whole New Lexicon

The early online asexual community had to develop new vocabulary for talking about asexual concepts, from the concept of a ‘squish’ or ‘friendship crush’ to the experience falling in love with others despite not having sexual attraction towards them, which turned out to be a common experience for many of us.

Comic about the types of attraction one might feel, illustrated by Secondlina

Haven For The Human Amoeba had already coined the concept of romantic attraction, and with it the idea of having a romantic orientation, as many people still seemed to experience romantic chemistry along traditional orientation lines.

As such, people talked about being heteroromantic, homoromantic and biromantic, or in my case queer romantic.

I also brought over the concept of sensual attraction, having met nonsexual bisensual people during a Sensuality workshop at my first BiCon in 2001.

Some members had no romantic orientation and so coined the concept of being aromantic as well as asexual.

Some, like me, had no ‘romance drive’ but felt romantic feelings once in a relationship. After I moved on from the community this was classified demiromantic – a concept explained to me at a later BiCon Asexual Spectrum discussion, that I find incredibly useful for explaining and understanding myself.

We explored the theory of asexuality and identified that some people had undirected libidos, some were nonlibidous. Some people were ambivalent to sex, some enjoyed sexual stimulation, while others were repulsed.

The important thing was that we didn’t define these experiences judgmentally; no one was ‘more asexual’ than anyone else, all were welcome.

As well as talking about asexual and romantic identities, there was early discussion of gender variance too. I’m pretty sure that the language of being agender grew out of AVEN’s forums, because before this genderqueer communities tended to use the terms ‘nongendered’, ‘gender neutral’ or ‘neuter’ instead.

From A Forum To A Movement

From AVEN’s beginnings where David Jay (Dj, aka AVENguy) and Lauren Liebowitz (aka Selie) ran the discussion community, while I (known as ParanoidGynandroid) fielded emails in response to the FAQ, the community grew and grew and soon became self-sustaining, and truly international, hosting versions of the site and community forums in many different languages, that themselves became self-sustaining.

This move to AVEN being run by a group of volunteers and not the work of one owner got an early start when DJ was away from the internet for several weeks in 2002 and Selie became the community manager, while I received all the site’s webmaster emails and fielded more than just FAQ-related questions.

AVEN is now truly democratic, with not only elected forum moderators, but an elected Project Team dedicated to promoting asexual visibility and education, creating and updating materials and organising events such as this one. People come and go, doing what they can and bringing their passion to the asexual movement.

I’m honoured to have been one of the first in a long line of volunteers that made this community what it is.

And the ethos of queer, inclusive asexuality we all built together in the early days of AVEN grew into numerous offshoot projects, as well as many unaffiliated competing or complementary organisations and communities.

Openly asexual people can now be found within myriad organisations, groups and publications, and not just those with queer focus. All kinds of communities now welcome and celebrate their asexual spectrum members. While, initiatives like Asexual Awareness Week continue to spread that acceptance further.

We’ve come a long way in 10 15 years!

Stepping Away From Asexual Visibility

During the mid-2000s, AVEN’s activism became increasingly focused on increasing visibility and public understanding of asexuality.

AVEN members began to appear on chat showscurrent affairs programmes and documentaries, giving media interviews and putting a human face to this novel and at-the-time easily dismissed concept.

New Scientist, 14th October 2004, Feature: Glad to be asexual, interviewing David Jay.
October 2004, AVEN makes it into the pages of New Scientist

As an androgynously presenting, genderqueer nonbinary transgender person with a transsexual medical history, I decided I perhaps wasn’t the best poster child for public understanding of asexuality and so stepped back to allow others to become the faces of asexual visibility.

Screenshot from the 2008 Guardian website, 'We're married, we just don't have sex'. 'Despite not being physically attracted to other people, Paul Cox, 24, explains how he and his wife found love and happiness as an asexual couple'.
September 2008, The Guardian interviews a happy asexual married couple

My decision to remove myself from the public image of asexuality may seem problematic (and it should!) but I was intensely aware of how easily I could become another Toby figure, presenting too many overlapping identities and experiences that would be conflated by the simplistic fast paced, tightly edited media world, or mixed up in the memories of viewers who only half understood.

I felt like my involvement had the potential to damage both the genderqueer and asexual communities – and this was before any of my autistic traits were formally identified!

I was also simply aware from hard learnt experience, that if I ever tried to explain more than one of my identities at a time, it was much less effective than keeping things focused.

Which isn’t to say that I didn’t continue to do asexual visibility and education work within the queer, trans and neurodiversity communities over the years, I just always steered clear of being anyone’s poster child.

Moving On

Away from the forums, I began a new romantic relationship with another persuasive sexual person, and so drifted even further away from asexual activism and back towards queer and genderqueer communities.

That relationship ended a couple of years later and I went back to my default position of being an ’emotionally self-sufficient’ standalone person with no romance drive (I’ve long preferred this description to ‘single’ as that has connotations of looking for partners), and that’s how I remain to this day.

I still had the activism bug though, finally launching the androgyny I’d planned since 2000, creating a Nonbinary Wiki, co-chairing my local trans group and later creating resources for neurodiversity and working with autistic spectrum focused groups. Always taking the lessons learned from AVEN with me.

Revisiting the Asexual Community in 2012

After a period of almost five years away, I recently returned to AVEN and other online and in person asexual communities.

How the AVEN forums looked in July 2012, still lilac but with more dark greys and purple headers.
The AVEN forums in 2012, when the Musings section alone had 215,236 replies

Revisiting an estranged community from my past felt like having coffee with an old flame, and made me realise quite how many of the things I love are associated with fandoms and communities of people that I share that passion with.

In a way, communities like ours are another form of shared intimacy that compliments friendships and partnerships.

Signs of My Involvement

In 2006 my FAQ was moved to the wiki where anyone in the community could improve on it. Between 2007 and 08 the earlier answers we rewritten and greatly enhanced, adding in references to newer concepts and removing some of rebuttals to negative asexual communities that no longer exist. To this day, many of my questions and the later answers still remain in their original form.

When reading though my version in preparation for this talk, I was surprised to find advice contained within that I was sure I’d only learnt years later through painful life experience.

It seems that it took another decade to really learn and truly believe the positive messages that I’d idealistically hoped could be true in 2002.

The Dismantling of Community Taboos

I’ve been asked to reflect on how the community has changed since I was involved.

Something that stands out to me is how many of the taboos that I used to perceive as existing around sex and other aspects of sexuality no longer seem to be such controversial issues.

Whether these were actually imposed by the community or something that was self-enforced, in the early days it was rare to see people saying they enjoyed sex with a partner, and certainly not in the present tense.

These days, with a large and mature community and much wider understanding of asexuality, there’s considerably more space for people who are comfortably affirmed as asexual while enjoying sex with their romantic partner.

This comfort has been reflected in our media image, where we’ve gone from a nonsexual and aromantic message to gradually seeing more and more media coverage of romantic asexuals, first in relationships with each other, and now in relationships with sexual people.

I’m pleased to have lurked in a number of recent discussions about ‘sexual asexuals’ and seen discussion of lots of different reasons why people without sexual attraction choose to enjoy sex.

A screenshot of a blue forum with the header 'Apositive.org'. Showing an article about sex positive asexuality incliding lines like 'Sex is great. Fan-bloody-tastic. Not only is it fun, it's good for you. Burns calories, reduces stress, lowers risk of heart attack...'. The article is illustrated by a white person wearing a flaming A t-shirt, their face obscured by a bright pink book they're reading entitled 'SEX'.
“Why I’m a Sex-Positive Asexual”, Victoria, Apositive Forum, 2008

And I was extremely pleased to see national press coverage of this event giving statistics of how many asexuals are sexually active and how many enjoy sex.

The Taboo of Kink and ‘Directed Libido’

While I recall early AVEN discussions of masturbation and libido, these were always described as ‘undirected’, I don’t recall anyone speaking up about having kinks or fetishes despite their inclusion in my FAQ.

I think that in the early days, discussion of sexually active or masturbating asexuals caused enough controversy and policing in some places that disclosing any more information seemed unthinkable.

One of the first things I found on returning to the community was an excellent discussion on the Apositive forum about the myriad different things asexual people with libidos think about when masturbating or having sex.

This was not the asexual community I remembered!

I’m told that there’s now a thriving and accepted asexual subcommunity on FetLife.

Taking Control of Our Narrative

I also now feel less pressure to be the perfect asexual poster child when representing the community in visibility work.

With the rise of YouTube and video blogging, the community has been able to bypass the media and take control of the narrative we make about asexuality. It’s possible to search for asexual voices and see far more diversity than any magazine article or news story can ever hope to depict.

Searching YouTube, I’ve found no shortage of asexuals of different genders; transsexual asexuals, nonbinary asexuals, agender asexuals and of course large numbers of women and men as well!

Screenshot of a set of YouTube playlists featuring videos by a group of vloggers on a variety of subjects
Hot Pieces Of Ace, the first Asexual group vlogging project, formed March 2010

The End of Poster Children and Gold Star Asexuals

I was especially pleased to have been pointed at critiques of these poster child pressures from the HotPiecesofAce discussions of the Unassailable or Gold Star Asexual. [Also see the A Carnival Of Aces group blogging project]

And I was so happy to see an autistic asexual so prominently featured in the (A)Sexual documentary. [Region locked video, public teaser trailer here and official trailer here]

So, unlike a decade ago, I have much less worry that talking about my gender, romantic orientation, autism and asexuality together will cause people to assume those things are caused by, or invalidate, each other. Or that my experiences must represent all people with all my labels.

I’m one voice in an ocean of others, and I’m happy that I can give this talk without obscuring the other identities that intersect with my asexual experiences.

Unintended Consequences

If I were to write an FAQ on asexuality today, it would look almost nothing like the one I wrote in 2002.

My biggest regret is that by putting so much emphasis on combatting the antisexual and sex negative voices that had dominated some earlier asexual spaces, we inadvertently made the early AVEN less welcoming to asexuals who experienced their asexuality primarily as repulsion, whether due to sensory sensitivities or emotional triggers.

I also feel that, with our focus on welcoming the widest range of asexual experiences into our queer asexual community, while not wanting to give anti-sexuals and prescriptivist nonlibidonists any foothold within AVEN, we unintentionally pushed some of the most culturally marginalised asexual people – the aromatics – so far out of AVEN that many don’t feel welcome in the asexual community at all.

When I visited AVEN in 2010, I was shocked to discover that there was still no aromantic forum on the site, and there still isn’t in 2012, meanwhile the aromantic community has moved away from AVEN to their own forum. [Now at Arocalypse, while AVEN finally has its own Aromantic space.]

Many times in my life, I’ve felt the wide umbrella term I identified with be slowly squeezed to look more and more like the most visible faces within it, until I no longer felt that I belonged at all.

I’m upset to suspect that I inadvertently had a role in doing the very same thing to the aromantic community, despite primarily identifying as demiromantic and having had no romantic relationships in other a decade.

The Need To Keep Challenging Taboos and Homogeneity

Of course there will always be people who feel uncomfortable within any community, and there will undoubtedly be some things that community members feel pressured to identify with, or to not talk about.

However, I can say that from my perspective things have definitely changed for the better overall.

I’m glad we have voices of asexual abuse survivors, disabled asexuals, autistic asexuals, depressive asexuals, and aces of other communities whose sexualities are often questioned or invalidated by cultural prejudices, speaking up as empowered members of the asexual community, both within AVEN and in the many other community spaces outside of it.

But we should continue to identify and talk about our taboos and cultural norms.

We must talk about the voices that are missing and be sure to provide space for dissent and nonconformity.

We should also signal boost and recognise the importance of groups formed away from AVEN, and celebrate the new identities and communities that have developed out of the language of nonsexual, aromantic and grey-asexual intimacy that our community explored.

The Biggest Difference

And the final, most obvious difference between the asexual community of today and the one I drifted away from in 2004 is sheer size. AVEN has long been too large for any one person to possibly keep track of, and not only has the community become multilingual and far more international, but it’s spread far and wide online, so that there are now many happily out asexuals who’ve never seen the need for an AVEN account or even heard of AVEN’s existence.

Not only that, but we’re no longer a purely online community, there are now many in person asexual groups, meet ups and events.

Ten years ago I’d never imagined that I’d have access to local meet ups or that there’d be asexual marching groups at Pride – and I certainly wouldn’t have believed that I’d be speaking at this conference!

A group of people waving or wearing the asexual flag, holding up metallic inflatable letters spelling 'ASEXY' and holding purple balloons during a pride march.
Asexuals marching in San Francisco Pride, 2009
A group of people marching in bright sunlight, holding up hand written signs like 'Too ASEXY for Sex' and 'Asexuals: WE EXIST'
Asexuals marching in Toronto Pride, 2011
A group of people wearing purple t-shirts with designs like 'Caution: Flaming Asexual' marching behind a purple AVEN banner with an asexual flag design. Holding up printed signs like 'Asexy and I know it' and 'This is what an asexual looks like' in many different languages.
Asexuals marching in WorldPride London, 2012

In the decade since the ‘modern asexual community’ was founded, asexuality has become well known and widespread in the types of communities I frequent.

I still find myself surprised but oh so pleased whenever I come across asexuality visibility and inclusion in unexpected and unrelated places.

AVEN can be proud to have achieved so much towards its goals of visibility and education, but there is always room for improvement, and I’m excited to see what the asexual movement will achieve in the decades to come.

So that’s me done, thank you for listening! I’m looking forward to the rest of this conference!

Extras

My talk was recorded on two different cameras and so exists as two different videos. Unfortunately both have terrible sound quality and no subtitles. I’ve enabled community subtitle contributions on mine.

See the very brief Q&A after my talk on the AVEN YouTube channel here (with atrocious audio and no subtitles).

I discussed more memories of my involvement with the beginnings of AVEN in a thread on the Apositive forums in 2010, which was written up as part of a blog post by trivialknot aka Siggy on the site Skeptic’s Play.

If you read one other Asexual Awareness Week blog post, make it this one.

If you read one comic, make it this set of tweets by Lyd Fama.

Autistics Speaking Day 2015: Podcasting from autistic space

By coincidence, I reached the ‘In Autistic Space’ chapter of Steve Silberman’s New York Times bestselling, excellent, but often harrowing autism history book NeuroTribes on the morning November the 1st, Autistics Speaking Day. I’d just finished chapters detailing the pathologization of autistic people’s interests and social behaviours, the abusive origins of ABA and how the early US autism parents movement was derailed from its initial aim of services and acceptance by pseudo-scientific promises of cures and scare stories about causes. So it came as a relief to read about the development of the early online autistic community and in person autistic spaces, of ANI and the first Autreat, and of the birth of the neurodiversity movement.

It was a timely reminder of the importance of autistic people, regardless of where we are on the spectrum, having a voice to counter the stigma and the stereotypes spread by cure-focused charities, autism ‘experts’ focused on a deficit model and the mainstream media outlets that often amplify these messages. Thankfully NeuroTribes is full of profiles of and perspectives from autistic people, and its positive message has been getting widespread media coverage, countering many myths and putting the call for services and acceptance back on the agenda.

The other thing I was doing today was working on the 4th episode of Autistic Flappy Hour, the podcast I co-host along with two other autistic adults, Laurine, who initially suggested the idea on the #autchat Twitter chat, and Cisco, who is one of the founding moderators of #autchat.

There are some challenges in producing a regular hour-long podcast when everyone involved is autistic and busy with many other things. We originally aimed to produce our episodes every 2 weeks, but this quickly proved to be impractical given the amount of preparation and editing required and we’re now aiming to be monthly, although not always succeeding.

In order to make the process of recording accessible to all of us, we write out at least 80% of what we’re going to say in advance using online collaborative document sharing with multiple revisions as we each add comments based on the others’ responses. Even with a script and lots of preparation, during recording we may ramble, misspeak and repeat, or need to stop for breaks or to ask questions. Some of us tend towards saying too much and others tend towards being extremely concise, so balancing how much we each speak can be a challenge. When I’m moderating, I often lose track of the need to be brief and go off on elaborate tangents. All this means that editing involves more work that many podcasts do, and I also have the tendency to be over-perfectionist resulting in even greater editing time.

Early on we made the decision never to release episodes unless we had a full transcript available, because this is an important accessibility aid for any audio-based medium but especially important for a podcast aimed at autistic people, given how many of us have trouble with audio processing. Transcription does sometimes cause additional delays to our release schedule, but we’ve worked out a process to do this in parallel with the editing, and the tendency to script out most of what we’re going to say in advance usually makes thing a little easier. I think Laurine does an amazing job.

All in all, it’s a lot of work, but I think the amount of effort we put in and the different ways we’ve found to make podcasting work have resulted in some very strong episodes. We’ve been getting some positive feedback from people who have found it useful and affirming, including saying how great a feeling it is to hear other people talking about being different in the same way you are.

I think my favourite response came from Ari Ne’eman of the Autistic Self Advocacy Network who said:

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Happy Autistics Speaking Day everyone!

World Autism Awareness Day 2015

My tweets from the 2nd of April 2015 hoping to raise awareness of how to include autistic people

My tweets from the 2nd of April 2015 hoping to raise awareness of how to include and support autistic people. Collected for easy reading using my Storify account.

https://storify.com/quarridors/un-world-autism-awareness-day-2015

Strategies for coping with international air travel

Air travel is something that happens to me infrequently enough to not be ‘second nature’ or ever become truly familiar. I currently travel overseas every other February, with the gap of two years being enough that I forget some of the procedure and most of the details.

I’m prone to being late to everything and to getting extremely upset if I miss travel connections even within my own country, and that’s without the non-refundable expense and vastly increased administration requirements (visas, insurance, multiple connecting forms of transport etc). As such, I’ve come up with a great deal of strategies to compensate for my usual travel challenges, which generally involve an excessive degree of pre-planning and contingency planning. It seemed useful to share these strategies with others.

I originally wrote this post in one sitting of several hyperfocused hours in response to this excellent post by Alyssa at Yes, That Too. I’ve long meant to develop all of my blog-post-length comments on other people’s blogs into posts here, but never got around to it. Right now I’m in the ‘obsessively checking everything’ stage of preparing to fly to Los Angeles for a Doctor Who convention in a week’s time, so proof reading this post became a productive use of my time, and reassures me that I really have thought of everything.

Booking flights and transport

If you have access requirements for seating, such as needing a window seat to avoid airsickness (as I do) or an aisle seat to not feel trapped, or a seat with a space next to you if being accidentally touched by others is uncomfortable, you can increase the likelihood of meeting these by travelling at an off peak time, such as in the middle of the night on a week day. These flights are often cheaper.

I find the flight relatively comfortable but the time in the airports very stressful so I tend to try to save on flights by booking at ‘inconvenient’ times when the airport is likely to be less busy and put the savings here into avoiding having to change flights mid-journey (something that I find extremely stressful).

I also aim to spend extra to have flexible ‘open’ train tickets for airport travel so that’s one less thing to stress about on the way there and home (I’ve melted down or had panic attacks around missing exact train times enough times to know it’s worth the expense) – unfortunately this time it was something like three times more expensive to do that so I haven’t. This is especially useful when travelling home at the end of your journey as arrival time and time to get through customs can vary hugely. However I’ve been told by the ticket office assistant that if I get a letter from the airline saying that my flight was delayed, I can use this at the station ticket office to get my advance ticket changed to a later time.

Be sure to account for the travel to and from the airport when choosing the time of day for your flight. If public transport doesn’t run at certain times of the day or night, and you’re travelling from a long way away (as I am), you may have to limit yourself to afternoon or evening flights. Another option is to book a hotel relatively near the airport for the night before your flight. Be wary of how early you might need to travel as this can put you into expensive ‘peak time’ commuter rate tickets on a week day.

Since publishing this article a friend has reminded me that coaches (long distance busses) run directly to Heathrow airport terminals without the need to change coach or cross London. I usually discount the existence of coaches because I’ve been known to get extremely motion sick on them, I find them uncomfortable and the journey times tend to be longer, but I’ve verified that I could have got a direct open return coach ticket the Heathrow for slightly less than I paid for my train journey with set travel times there and back. This might have been the lower stress option (you do seem to have to use the telephone to get yourself onto the coach home though).

If possible plan to give yourself extra time for check in, customs and check out when planning travel to and from the airport. For international travel, the recommendation is usually arriving at the airport with 3 hours to spare. Allow more time if there are several connections in your domestic journey.

Work out the transport option you’re likely to take when you arrive (such as a taxi, hire car or shuttle bus to the hotel), note down all the details. Book in advance if possible. Use something like Google Maps to take a visual tour of the route to and from each airport and wherever you’re staying so it’s somewhat familiar when you travel.

Passport, visas and travel insurance

Don’t book your flights unless you have a passport valid for the travel dates, or you are certain you have time to apply for and receive one (going to the passport office in person can help with this, as can paying an extra fee). I also take a colour copy of my passport ID page with me, should my passport itself get lost, and keep this away from my passport.

After booking your flight, you’ll also need to ensure you have the required visa or visa waiver. If you’re travelling between European Union countries (or other such countries with open travel agreements, this may not be necessary but do check). When travelling to America you can pay for the required ESTA visa waiver online.

Make sure that you have travel insurance. This may come as a free perk, for example with your bank account, or cheaply as an additional option when booking your flight. Be very certain if you’re travelling to the USA that this is explicitly covered, as this is often excluded or comes at higher charge.

If you have any pre-existing medical conditions that you’ve been treated for in the last two years or have had recent surgery or medical treatment, the terms and conditions of basic travel insurance probably don’t cover you. Do not travel to America without being certain you are actually covered for medical emergencies. Not having valid medical cover in the USA could cost you several times the cost of your flight.

In my case I have asthma, which is enough to triple the price of travel insurance. I used a travel insurance company specifically aimed at travellers with pre-existing medical conditions. Signing up for this required me to list all my medical conditions that are currently undergoing some form of treatment, with Asperger Syndrome (and Autism Spectrum Disorder) being on the list of recognised conditions (I am still being seen by my local adult autism service, albeit only every 6 months now, so it met the criteria). When I disclosed Asperger’s I was additional asked several questions about anxiety. If you experience either of these and haven’t disclosed them to the insurance company, your travel insurance may not be valid.

Travel money

Be sure to buy travel money in advance, don’t use the exchange kiosks at the airport, this will have a poor rate and likely charge commission. I was able to order travel money delivered to my door (or nearest branch) next day through my bank’s online banking system.

I used to also buy a number of travellers cheques to convert into cash as I ran out during my trip. Some hotels will convert travellers cheques to cash without charging and with just your passport as ID, but this is becoming increasingly rare and cashing travellers cheques can be very difficult.

Be very wary of your home credit cards and especially debit cards as these may charge a lot for overseas use, including foreign currency fees for every transaction, additional fees for ATM use, poor exchange rates and even outright blocks on overseas use. Be sure to research this in advance.

Inform your bank if you’re likely to use your card overseas as they may suspect this is due to identity theft and stop the card. Have a back up payment option as in my experience even informing the bank may not stop their automated system from stopping your card when used overseas. Make sure you have the phone number to call if your card is blocked, lost or stolen when overseas.

I researched and found my savings account could come with a credit card with no fees for overseas use. I also ordered a pre-paid dollar currency card with extremely good exchange rates (that can be topped up online, by an app or by SMS) and topped this up to use instead of travellers cheques (and as backup to the credit card). As this has a better rate, I intend to use it to pay the hotel at the end of my stay – be aware though, you must authorise with a different non-pre-pay credit card. Having a check in authorisation on a pre-paid card will put a huge pending charge on the card that will put you over your limit and take weeks to clear. If in doubt, check with the hotel that you can pay with a different card than the one you authorised with.

Pre-paid cards often have relatively large minimum top up amounts and may have a delay in reporting transactions on the card balance monitoring app/site. As such you should be cautious about accidentally going over your balance by a small amount and having to put another big top up on to pay this off. My strategy is to use the card only for extracting cash from ATMs when needed, and to top up the day before checking out to reach the full hotel bill amount, so there’s no worries over using what’s left on the card. I think this approach will make it easier to keep track of whether the balance is up to date without straining my limited executive function and mental arithmetic skills, and also work around potential delays in the card balance app being up to date.

Be sure to research the expectations of how tipping works in the country you’re visiting and ensure you carry cash so you can tip when needed.

Preparation and contingency planning

Work out contingency plans for things that might go wrong, including who to contact in an emergency. And make sure that this person knows all about your journey in advance so they’re not surprised should they be called upon.

If going abroad, work out roaming charges for your mobile phone including SMS/text charges so you at least have the ability to contact someone in an emergency. However turn off excessively expensive data roaming in advance (and turn off mobile data entirely as soon as you’re on the plane there). It’s usually cheaper to get a local pay as you go SIM card when you arrive, or get one shipped to you in advance of departure, or to use WiFi especially if you’ll mostly be in a location where WiFi is free. I tend to use WiFi at the event for most things, with SMS on my UK mobile phone for updating Twitter and receiving mentions and direct messages while I’m away from WiFi reception (whether SMS integration is available depends on your mobile phone network. Twitter SMS notifications can be set to only come in certain hours of the day, you may need to change these settings when overseas).

If you’re visibly transgender or gender nonconforming (as I am), it might make sense to have a letter with you explaining this. I have also had success getting gender markers removed from boarding passes (very useful as I tend to be read as a different gender depending on if I’m calm or anxious).

It may be possible to get a plan of the airport terminals you’ll be in and mark where the airline check in and airport security likely are. If you need an accessible or gender neutral toilet, you may be able to work out where these are in advance.

Luggage

If, like me, you’re too uncoordinated for wheeled luggage and/or have hypotonic arm muscles or other impairments that make pulling or carrying anything for any distance difficult, get luggage that’s a knapsack that converts into a suitcase and a smaller backpack. Do up all the straps tight – this helps. It may be the case that wearing the smaller backpack on your front (like a backpack but facing forwards) rather than zipped onto the back may be more stable and comfortable, or may be a good way to make things more comfortable after you’ve got too tired of everything on your back. Find a trolley for your luggage as soon as you arrive at the airport, or ask a member of staff for assistance.

I use the smaller backpack as carry on luggage for the flight and the knapsack with all the straps zipped away as my checked luggage. I put items that I want to transfer from my knapsack into my carry on backpack into an easily identified plastic bag so I can access them easily once the baggage separation and conversion is complete (doing this frees up more space in the backpack).

I also have a smaller over the shoulder camera bag that I use as my gender neutral handbag (purse to Americans) containing my wallet (cards, coins, train tickets etc), ID and various essentials like lip-balm, earplugs, a mirror and a pen. This doesn’t get counted towards carry on limits.

If you use your small personal bag or your carry on luggage for every day use, be sure to take everything out before you pack, and make sure you’re not carrying anything that isn’t allowed through airport security – including scissors, blades, and liquids and gels bigger than a hand sanitiser bottle. Put anything prohibited from carry on luggage that you’ll actually need into your checked luggage instead. Leave things you won’t use at home. I generally take the run up to an overseas trip as my cue to clear out the huge amount of junk that tends to accumulate in all of my bags.

Packing

Take at least a week’s supply of all your medications (and a copy of your prescriptions, or a doctor’s note) with you in your carry on luggage, and pack several spares in your checked luggage.

Take a light change of clothes and travel toiletries with you in your carry on luggage in case your luggage is sent to the wrong airport or delays mean you have an extended wait without your luggage.

In your checked luggage, be sure to pack clothing appropriate for the weather where you’ll be staying. If it’s going to be sunny then pack sunscreen, sunglasses (if you’re me you carry these all year around anyway) and swimming gear. If it’ll be cold then back coats, gloves, scarf and if necessary a thermal layer. If you have unusual dietary requirements, your hotel may be able to give you a room with a fridge on request. You might want to pack a travel plate, bowl and cutlery if that’s the case. Bring your own toiletries as much as is practical – I’ve had bad experiences with things like hand sanitiser bought in the US that absolutely stank of perfume in a way that no British brand ever would.

A tip for emergency medical supplies – pack electrolyte powder sachets in case you get food poisoning or something similar and need to replenish lost water and body salts. These make me feel so much better after I’ve been ill, which is especially important if it happens while you’re on your own in a hotel room.

Make a list of everything you need to pack. If you use an app for your lists, you can then save this and use it again the next time you travel.

Take an itinerary with you and a ‘cheat sheet’ with all your emergency contact numbers on it including lost or stolen card numbers and the claims line for your travel insurance. I also document where I’m staying, all the booking reference numbers, local transport details and the charges for my various credit cards and overseas usage of my mobile phone on here. Put copies in your checked luggage, in your hand luggage and on your person. Make sure someone you trust at home and, if possible, someone you trust at your destination also has a copy of your itinerary.

You should put luggage labels giving your name, your flight and your destination (hotel) address on your checked bags. I also put copies of these inside my checked bag and my carry on bags, in case the external tag gets ripped off and any of the bags get separated from me.

Useful technology

I have a USB charging battery that works with my phone and camera and will recharge them several times over (it has roughly the same size and dimensions as the phone). This is extremely useful for keeping devices charged during a long flight. Be sure that this is charged up and that all the required charging cables are in your hand luggage.

I also have noise cancelling headphones that make noisy situations, including those with regular background noise far more manageable with my sensory issues (I have a separate diagnosis of sensory modulation disorder). Buy additional batteries and ensure that they’re all charged. Take the cable and/or adapters needed to plug these headphones into the airline entertainment system.

I’ve bought a travel adapter that coverts power sockets to two USB ports, a UK plug to foreign plug adapter kit and now a spare battery and travel charger for my camera. Be sure to pack everything you need to keep your devices charged while you’re away.

Bring some form of entertainment that doesn’t require an Internet connection with you for both the waiting time at the airport and the flight itself (in case the in flight entertainment system doesn’t work). Ideally also bring something that won’t require any power at all, in case you’re stranded for long enough that your phone and USB battery have lost charge by the time you’re on the plane (although you can usually sneakily find a power outlet in a restaurant in the airport departure lounge, or if you have access to an airline lounge, power may be provided).

Checking in online

Checking in online can often be done 24 hours in advance of flight time (check your airline’s website) and allows you a much greater chance of booking a seat that meets your access requirements, and less immediate stressful socialising to do once arriving at the airport. I usually need 15 to 20 minutes to calm down enough to be coherent once I’ve arrived, which isn’t a problem when I’ve already checked in from home. Some airlines allow you to book the seat a week or more in advance of the check in window. Setting an alarm to remind you of this is likely to be helpful. Once you’ve done this then your seat is confirmed, your boarding pass is printed (make sure you have access to a working printer first!) and all you have to do on arrival is hand over your checked luggage and go through security.

If you have dietary requirements, you may need to book your airline meal in advance. In my experience, doing so means that you’ll get your meal before everyone else, which may be a better sensory experience (or less awkward if you’re an uncoordinated eater and sitting next to someone else).

You may also be able to look at the airline entertainment options in advance so you don’t have to make decisions while stressed, however don’t rely on the entertainment system working reliably and do bring a back up or three.

At the airport

Once at the airport, even if it’s not yet time to go to check in, to security, customs or to your gate, work out where these are and the route that you’ll have to take when it is time. If your prospective memory is as poor as mine, set alarms to remind you to check notices and make a to-do list of steps you’re meant to go through. Try to stay in sight of displays/notices/boards that you need to check, and especially set reminders if you have to move away from them.

When checking bags, explain your access needs around seating and double check that your dietary requirements have been recorded. If you’re disclosing a non-apparent disability, it may help to bring documentation to support this (I have no direct experience of this as I haven’t chosen to disclose a label, rather asked ‘I have trouble with X, is it possible to Y?’ type questions and got all the help I needed).  If there’s anything you’re unsure of and couldn’t find out from the website, ask it now. It might be helpful to make notes (perhaps on a mobile phone) and/or summarise what you think you need to do next to allow the check in assistant to confirm that your understanding is correct before you leave the desk (this is my standard strategy when dealing with spoken instructions – it helps pick up receptive language problems and also slows things down to help with processing speed and makes me think about the instructions in a different way, so I’m more likely to take them in and remember them – you also end up with notes).

You may find that it’s possible to be among the first or last people to board the plane if you would find this less stressful. There’s no harm in asking even if they say this isn’t possible – if this is really important then this would be a good reason to disclose your disability/label/diagnosis so the Equality Act’s ‘reasonably adjustments’ will apply).

It may be the case that you won’t be able to have some of your access needs met so prepare yourself for this eventuality. I have personally found that if access arrangements are agreed and then don’t happen, this is worse than if I had no expectations for help, so I tend to be somewhat conservative in choosing when to ask for formal disability accommodations.

Before going through security, finish any drinks you’re carrying as any liquids over a small travel size will be thrown away by security (better to do this yourself before going in). While you can’t take a drink through security, you can take an empty bottle to refill on the plane so rather than throw out your drinks bottle, finish it up and put the empty in your bag. Anything containing liquids and gels has to be put in a 20cm/8″ square clear bag (that should be provided) and carried in your hand, do this as early as you can, if possible put all your liquid and gels into one of these as part of your packing to be certain that they all fit and prepare for security in advance. Be prepared to put all your belongings on to the security scanner and also to take off your shoes and belt. Wear trousers that will stay up without a belt. Keys, coins and smartphones have to go on to the scanner belt too (you could put smaller items into your bag before going in to make this easier). You should be provided with trays to put your items in. As Alyssa’s blog post suggested, take spare socks in your carry on luggage if having walked on the airport floor in socks will cause problems.

I personally found some of the instructions from security personnel unclear (not understanding instructions is a common problem for me), but I tried hard to come across as compliant. I tended to ask questions that mirrored their instructions like ‘I should put it in here and then put that on there?’ or ‘Am I doing this right?’. See more in the ‘Social strategies’ section at the end.

There will likely be a long period after checking your bags and going through security when you won’t be able to go to your gate yet and will have to entertain yourself in the duty free lounge or restaurants. Be sure to set regular alarms to check for a gate number or boarding being open if you’re sitting away from displays (for example in a restaurant, airline lounge for an airline you’re not travelling with, or an out of the way location where you could recharge your mobile phone). Set an alarm 30 minutes before your flight is due to depart to ensure that you don’t miss boarding (I have come perilously close to doing this before, despite all my other planning – my executive function, working and prospective memories, and perception of time are poor).

Befriending someone else taking the same journey with you can be helpful should something go wrong. I realise that this isn’t an easy thing to do and is usually something I only manage on the flight home after a large event. Having another person with you can also be a source of stress if they don’t respect the way you need to do things to feel secure.

You might discover that your bank account, credit card, breakdown cover, travel insurance or similar service actually gives you free access to an airline’s private waiting lounge at the airport. If this is the case then I very strongly recommend taking advantage of this perk as they’ll provide quiet comfortable space with free food and WiFi until your flight is ready. Sitting close to these lounges may allow you to access the free WiFi without having access to the lounge.

On the plane

Tell the flight crew if you have any seating or other access requirements. It may be helpful to have a letter explaining these requirements in case you’re too stressed or anxious to explain. If you’re prone to air sickness ask for sick bags and tissues in advance of takeoff and landing, especially if you haven’t been able to get a window seat.

If you’ve been able to book a flight at an off peak time and not all the seats are filled, you may be able to move to a different seat once the plane has taken off. In my experience you’ll be asked to sit in your reserved seat for takeoff but may be allowed to take to any seat you like once the seatbelt lights are off, as long as you ask permission and then tell the flight attendants where you changed to.

I’ve been on empty enough flights that I was allowed to take an entire empty row of seats and lie down horizontally across them.

Your feet are likely to swell up on the plane which is uncomfortable if you have shoes or socks on. I’d recommend taking off your shoes and bringing a pair of loose socks to change into once you’ve taken off and settled into your seat.

A neck support pillow can help you sleep in your chair. This may otherwise be difficult, especially if you’re not used to sleeping on your back.

Work out which of the toilets are least frequently used should you need one in an emergency. Some planes have water fountains and cups in the middle of the economy section, if you bring an empty bottle on board you can also refill it here.

Schedule breaks to get up and walk around, this can help with cramp and avoiding deep vein thrombosis (if you’re in a high risk group take support stocking with you and also wear these), and also stop you from feeling too squirmy, uncomfortable and restless in your seat. Walking around on tip toes and doing stretches out of your seat seem to be acceptable full body stimming (proprioceptive feedback) for a plane – they’re recommended for avoiding DVT. Putting your carry on luggage on your lap could give some of the effects of a weighted blanked too. I’ve also found hugging my bag to be calming when I’m stressed.

Social strategies

How other people treat you varies hugely depending on how you’re perceived.

I’m an autistic, white British, employed, younger-looking-than-I-am, usually articulate, androgynous but ‘blending in’ trans* person with no visibly apparent disabilities, generally taken to be a middle class student (even though I’m a 34 year old IT professional) who is likeable if ‘neurotic’ under stress.

I tend to attempt to be non-confrontational, friendly and slightly apologetic when I talk to people who are just doing their jobs, and I’m even more cautious when they’re in positions of power over me. I try to smile at people, do positive small talk and make light hearted comments whenever someone’s being nice to me (although around airport security I just do what I’m told and only ask questions when I don’t understand). I can’t usually predict how strangers will gender (or age) me, especially based on first impressions, so I have several strategies around avoiding problems with this.

I’m more likely to respond to aggressive or dismissive reactions or unpleasant treatment with crying rather than aggression. People’s negative reactions to me are generally finding me slightly ridiculous, annoying or neurotic, or being upset for some reason, or simply ‘over compensating’ once discovering how old I am (or, at airports, unfortunately on seeing the gender marker I’m forced to have on my passport).

If you have a history of people responding to your attempts to be friendly and compliant with suspicion or aggression, you might need different social strategies to me.

Given all the above disclaimers, I’ve found that it’s best to find someone who works for the airline or who looks friendly when I’m lost of have a problem. This usually results in friendly attempts to help, even when they ultimately can’t do anything constructive. I’ve had very few negative experiences from doing this, but I try to prepare myself for getting them.

I’ve only had one unpleasant, upsetting airport security experience with body scanners and the operators disagreeing over my gender when travelling (leaving LAX), I was lucky to have someone I’d met at the convention I was coming from with me at this point or I would’ve struggled to calm myself down afterwards. I’ve otherwise not had problems and actually weirdly found the tight lower leg and arm pat downs oddly pleasant.

I’m more likely to get upset during local public transport journeys than for international air travel, as I over prepare to the extreme for weeks or months in advance for the latter.

Summary

Prepare for everything, give yourself lots of time. Write to-do lists of everything you need and set reminder alarms for all critical steps during travel such as online registration, leaving for travel, checking for boarding being open etc. Document everything you might need, including card and passport numbers and your full itinerary, addresses and details of any connecting transport, and carry copies of these in all your bags. Ask for help when needed, but whenever possible talk to representatives of your airline or the airport rather than airport security. Pack your hand luggage as if you might be without your checked bag(s) for several days. Especially include any medications you might need.

Nottingham Cafe Sci “Thinking about Neurodevelopmental conditions in adulthood”

Yesterday I attended the Nottingham Café Scientifique talk “Thinking about Neurodevelopmental conditions in adulthood” given by Dr Jo Jones, Psychologist based at the NHS Nottingham City Asperger Service aka NCAS. I live tweeted the event and then later developed these tweets into a more detailed report using the free service Storify.

As NCAS is the service where I was diagnosed and where I’ve been seeing various specialists for over a year (although not Jo), and as the talk was very interesting and very much within the ‘autistic spectrum and its overlaps’ remit of this site. I thought I’d share the summary I made here. It’s easily as long and taken as much work as a typical blog post.

https://storify.com/quarridors/live-tweeting-from-nottingham-cafe-sci-thinking-ab

First Impressions of a Non-stereotypical Autistic

When you first meet me, you might not think that I’m autistic.

The Stereotypes

I’m probably not the stereotype the that average person would think of when imagining an autistic person or someone who’s been diagnosed with Asperger Syndrome. I know this because since I started disclosing to casual friends and new people, I’ve received several variations on disbelief including “I would never have known”, “You don’t seem autistic to me”, “You aren’t like any people with Asperger’s I know” and “I obviously don’t understand what autism is”.

(Although people who’ve lived with or worked closely with me have instead said that “This explains a lot”, “makes sense” or that trait lists “describe you perfectly”).

Most media depictions are a simplification or focus on children, textbook definitions don’t account for growing up and developing coping strategies, and people tend to generalise the traits of the small sample of autistic people they’ve met into an idea about all of us. By definition, stereotypes are simplistic and limiting while the autistic spectrum is diverse and varied.

I also know that I don’t fit many of the stereotypes for Asperger Syndrome because for the first ten years of my adult life, I had the recurring experience of hearing or reading someone talking about what it was like to be autistic and finding myself relating incredibly strongly to some new aspect of it. Each time this happened I’d go into an intense period of research, hoping again that this would explain how I was different. Every time I would ultimately abandon the idea having found some other rigid explanation of what having Asperger’s was like that I wasn’t able to reconcile myself with.

It was something different each time. First it was how people with Asperger’s didn’t care about the feelings of others then, after I discounted that, how they were monotonous, overly formal or spoke with a flat affect. Then when I came across exceptions to that, how they were extremely shy or socially avoidant, then how they were highly organised, following rigid routines, then how they lacked imagination and creativity, or only read non-fiction and disliked the theatre.

It was only through learning that the DSM-5 would be removing the distinction between Asperger’s and autism, that I instead researched autism as a whole. And by doing that I started to see myself reflected.

Ironically, I first found confirmation that I fit the spectrum in outdated lists of how adults labelled with Asperger’s differed from those labelled with ‘High Functioning Autism’; not in the Asperger’s column but in the list of things that people with my lack of childhood speech delay supposedly didn’t do. (One of my books even says that people with Asperger’s don’t tend to stim, and another fails to mention this at all!)

After learning that the consensus was now that having had a speech delay or not made no meaningful difference to the person in adulthood, I was able to read older materials about ‘High Functioning Autism’, and from there newer articles about ‘atypical’ and non-stereotypical Asperger’s, including alternative ‘types’ such as “Hidden Autistics” and newly developed stereotypes for how Asperger’s presented in women and girls. The more perspectives on the autistic spectrum I read, the more alternative lists of traits I came across and the more theory I understood, the more I recognised as fitting me.

I now see the old stereotypes as corresponding with a subset of the spectrum, but also as corresponding with only some of the possible coping mechanisms for growing up with social impairments while still being verbally able. Ones that are likely to be more common if you’re socialised as male, but which are by no means the only response. And ones that have previously been disproportionally selected for during autism assessments (or at least, other presentations were selected against).

My Reality

Nat TitmanAs for how I come across on first impressions in casual social situations? Well obviously I’ve never had a first impression of myself or interacted with myself from the outside. But I have had a lot of conversations about my social interactions; first while I was trying to explore if I was autistic, and then later when trying to adjust to and disclose my diagnosis. How I come across to others has been discussed in some detail.

So then, assuming I’m not sensory overloaded or fearing for my safety, I tend to be humorous, animated and enthusiastic. Possibly over-expressive, definitely with way more gesticulation that is usual.

If you smile at me I’ll probably smile back and I’ll probably laugh at your jokes even if I don’t always get them, because I have the habit of mirroring other people’s positive emotions. In fact I find it difficult to stop myself from smiling when I’m happy or other people are happy.

If you seem to value eye contact, then I’ll probably mirror this (although possibly in a slightly awkward way), if you don’t seem to be looking at me, I’ll happily look at something else while I talk. I may even start to pick up your vocal mannerisms and accent, although this isn’t intentional.

If the environment is safe and comfortable, I tend to be energised by social interactions (which is some people’s definition of extraversion). In fact before I recognised this and learnt to moderate myself better, I often used to become extremely over-enthusiastic in new situations and would come across as manic or, as a friend once said, ‘completely freaking out’.

If I’m around the right people who appreciate the things that I like to talk about, then I’m likely to be actively interacting with others. This doesn’t mean that I’m necessarily good at these sorts of social interactions, but it does mean that I’ve learnt how to choose social situations where I’m more likely to fit in, to be appreciated and where having impaired social communication isn’t a barrier to participation. (Yay science fiction conventions!)

When I’m talking I tend to lace everything with humour (although not necessarily humour that I expect anyone but me to notice or enjoy) and may grin or laugh at my own jokes.

Because I use so much humour, people often assume that I’m joking or being intentionally silly when I’m not, which can allow them to overlook signs that I’m failing to understand them or respond appropriately. If I take something literally then people often assume that this is a joke, this is compounded by the fact that almost all my humour is connected to the absurd literal meanings of words (unless it’s sci-fi references and personal in jokes).

I have a habit of forgetting to greet people because I’m so excited by seeing them, or distracted by something they’re wearing, holding, saying or doing. Sometimes I remember that I forgot to do this and do so twenty minutes into the conversation. I’m told that this has the same jarring effect as suddenly getting the opening credits to a TV show several scenes into the episode.

I’m talkative and likely to be the one doing the most talking, usually about whatever I’m interested in at the moment. My favourite type of interaction is probably closer to a lecture than a conversation, but I do try to remember to talk only half the time. I’m unfortunately really bad at telling if people are bored and not so great at remembering to ask them, and I’m also not good at telling if people are humouring me or genuinely interested, and if people ask me a really exciting question I might tend to forget all the rules.

I also tend to be verbose, not know which parts of an explanation to leave out and go off on long rambling tangents about barely related side topics. Then later jump back to the original topic exactly where I left off, often disorienting the listener.

However, I’ve had enough people genuinely beg me to keep talking about what I was talking about, and invitations to give talks and run workshops, to know that you may not ever realise that I have these problem because you were actually engaged by and interested in what I was saying and actually wanted me to talk ‘at’ you for hours. (Especially given that I try to pick my social outlets so they’re likely to be full of people who share my interests and passions).

The pitch and volume of my voice tend to go all over the place depending on who I’m talking to, what I’m talking about and whether I’ve just been singing. My vocal quality is closer to ‘sing-song’ than monotone. I tend not to notice if I’m speaking too loudly or if my voice has suddenly changed pitch. If I’m excited about something I may talk too quickly. This results in most people seeing me as very animated and expressive.

I’m also easily distracted by, notice and comment on other people’s conversations or the background music, and have a bad habit of managing to distract myself with something I’ve just said. If I realise that I’ve made a mistake or think of something new, I tend to immediately comment on it, even when doing so is inappropriate or distracting.

That isn’t intentional ‘quirkiness’; I have poor impulse control and generally tend to say whatever comes into my mind.

If I’m in a situation where it’s important to control my impulses then I tend to put a lot of effort into filtering myself and so finding this extremely tiring, so if I’m comfortable and in verbal mode then I’m probably unfiltered. However this does mean that on the small number of occasions where I got extremely drunk, I was still able to control myself and behave as if I was sober when it became necessary to do so.

I’m fidgety and tend to be in motion, but I’ve learned to limit this to inconspicuous motion unless I’m tired, at which point I may begin to squirm. However if I’m talking, my hands will probably be gesturing a lot. If I’m in a situation where I’m required to do something physical like dance, stand on one leg, jump up and down, swim in a pool or bounce on something (as long as the sensory environment is comfortable and it doesn’t hurt) I’ll probably look pretty strange but end up infectiously gleeful and giggly.

Although I can be quite cynical and pedantic, I can also be surprisingly childish and joyful in an entirely unselfconscious way. I may absentmindedly sing, dance or skip in public. Although my writing tends to come across as formal and my written tone seems to be taken as very serious, in person I’m faintly ridiculous.

In general people who’ve met me in environments where I’m comfortable, tend to report that I made a positive first impression on them. They use words like ‘intelligent’, ‘interesting’, ‘articulate’, ‘expressive’, ‘warm’, ‘funny’, ‘quirky’ and ‘likeable’. They also report assuming that I’m socially capable and comfortable because of this, even if I can seem pretty unconventional.

Of course the people I’ve got this feedback from are the ones who’ve got on well enough with me to be having those conversations, so they may be overly skewed towards the positive, but that also means they’ll tend to be people who communicate in honest and direct ways because that’s who I tend to be compatible with.

If you’d like to judge my ‘first impressions’ for yourself, here’s a video I made two years ago talking about androgynous voices and here’s me giving a talk about asexuality at the WorldPride Asexual Conference in 2012 (note though, someone else briefly introduces). Both of which I begin by introducing myself and talking a little about my history.

The Disconnect

Despite coming across to most people as socially confident and able on first impressions, or when I’m interacting in an environment where I’m comfortable and appreciated, the specialists who undertook my diagnostic assessment didn’t have any difficulty giving me a diagnosis of autism. It’s standard procedure at that service to have the two assessors discuss and analyse the assessment results in detail and report back on if they’re diagnosing or not in a follow up appointment weeks later. But in my case they were both confident enough to tell me I’d been diagnosed immediately.

My diagnostic assessment report states that:

“Nat comes across as socially capable in their interaction and described themself as making an initial good impression. As more time is spent with Nat, it becomes more apparent that the social reciprocity is learnt rather than instinctive.”

That summarises the issue well. I have learnt good surface social skills (and enough social confidence that my failings don’t matter) and I have very little social anxiety, but the more time you spend with me past a first impression or a casual social interaction, the more likely you are to realise that we’re not making deeper social connections.

You might notice that I’m very often misunderstanding you or changing the subject back to something I’m more confident about. You may notice that I give ‘mixed signals’; seem to be socially reciprocating your interest but then seem to ‘go cold’. You may notice that I make ‘socially careless’ comments or don’t give the responses you’d expect.

If we socialise somewhere that overloads my senses, you might wonder why I’m so much more withdrawn than usual or seem to have trouble thinking clearly or remembering the words for things. You may wonder why I make my excuses and leave early, or why I’m too tired to talk to you the next day.

Ultimately you might give up on me, assuming I didn’t really like you or that I’m not worth the effort, or I might tell you I’m autistic which will either shock you or explain a lot, depending on how much time we’ve spent together outside of my ‘comfort zone’.

You might never even get to know me. I have difficulty approaching people, especially if we haven’t been introduced or there isn’t a reason or ‘permission’ to be talking. I also have difficulty recognising that people want to talk to me if they don’t show this in a direct way. When combined with the fact that I may seem socially able and confident enough to talk to anyone, this results in me only talking to assertive people who’ve approached me in a very direct way and then not been put off by my apparently carelessness.

Disclosing doesn’t always help. Lipreading deaf or hard of hearing people who ‘sound hearing’ (due to having the higher pitched sibilant sounds in their speech) can find that people with otherwise good deaf awareness find it difficult to remember to keep their lips visible to them while speaking because they’ve associated this behaviour with deaf-sounding people. In the same way, my over-expressiveness and ‘active but odd’ outgoingness can mean that people who understand how to accommodate autistic traits may forget that they need to when talking to me.

Most people’s stereotype of autism includes that the person is noticeably poor at socialising, this usually seems to mean that the person doesn’t seem confident, that they’re ‘rude’ or monotonous or boring. I’ve even had someone tell me when I was seeking assessment that I couldn’t be autistic because they found me too ‘warm and likeable’ – quite some prejudice there!

Even people with good autism awareness tend to expect to be able to tell that the other person is autistic so that they can adjust. Making a ‘good first impression’ isn’t always positive if it means that people assume too much of you or attribute malice to your impairments and coping strategies.

This said, I make very little effort to ‘pass’ as non-autistic. When I feel comfortable and safe my traits are very visible, if you know what to look for. I used to have negative coping strategies that made me socially withdrawn, repressed and constantly uncomfortable with who I was, but I’m lucky enough to have found a way to break out these while I was still in my teens and vowed never to ‘pass’ again long before I learned that I was autistic.

All the things that I’ve said about myself above are clear autistic traits that would count towards a formal diagnosis. Even the positive traits that lead people to see me as expressive, enthusiastic, engaging and likeable.

More autistic people than ever before are growing up having words for who they are and the understanding of the people around them. And more of us are talking openly about our experiences and are visible autistic faces to the world around us. I hope that soon the public understanding of the autistic spectrum will widen and more happy, flappy, stimmy, enthusiastic archetypes of all genders will join the currently understood stereotypes.

Understanding the ‘Spectrum’ in Autistic Spectrum

One of the most common misconceptions I see about the autistic spectrum is the idea that a spectrum must cover all people. I’ve seen variations on this statement appear in several places:

“Everyone’s a bit autistic, that’s why it’s called a spectrum.”

People who make these sorts of comments seem to think that the autistic spectrum measures everyone’s ‘degree of autism’ on a scale from not at all autistic to totally autistic, and so everyone’s somewhere on the spectrum.

The Autistic Spectrum? [A gradient from white to grey, labelled '0% Autistic' at one end and '100% Autistic' at the other]

This is not what ‘autistic spectrum’ is meant to mean.

In fact only autistic people are on the autistic spectrum. If you’re ‘on the spectrum’ then you are autistic (or ‘have autism’, whichever is your preference), it is a spectrum of the people who are autistic. Not autistic? Not on the spectrum.

We say that autism is a spectrum condition because there’s a huge amount of diversity among people who are autistic, so it’s more helpful to consider autism as a wide range of different experiences rather than taking a single one-size-fits-all approach.

The cliche is that when you’ve met one autistic person then you’ve only met one autistic person, and there’s a lot of truth in this. It’s surprisingly easy to find two people who are both autistic but have astoundingly different traits, personalities and communication styles. In fact I’d go as far as to say that you’re more likely to find these extreme differences in a group of autistic people than in a similarly sized group of non-autistics.

Jelly beans of all different colours
Image credit

Instead of imagining the autistic spectrum like a scale, think of it like a spectrum of colours. All the colours are on the spectrum, regardless of where they appear in the rainbow, but they can look very different to each other.

Some colours go well together, while others clash. Some colours blend in, while others stand out. Which colours are most visible depends on the observer and the lighting conditions.

Some colours we have words for and you’ll find them in every box of crayons, while some are in-between colours with names like ‘yellowy greenish colour’. The important thing is that, despite being hugely diverse, every one of the colours in this spectrum is as much a colour as any other.

Now we’re talking about colours, perhaps your mental image of the autistic spectrum looks like the spectrum of visible colours, but maybe, rather than labels like ‘Red’, ‘Yellow’ etc, perhaps you’ve labelled them with diagnostic terms like ‘Asperger Syndrome’, ‘Kanner Autism’, ‘High Functioning Autism’ etc.

The Autistic Spectrum? [The Visible Light Spectrum labelled
(If you don’t know what you’re looking for, you might mistake the fringes of the visible spectrum as colourless rather than blending into ultraviolet or infrared, that’s why I put PDD-NOS at the opposite end to Asperger’s – sorry for over-thinking the analogy!) Visible spectrum image credit
However, these types of separate, defined diagnostic terms aren’t actually all that useful because they suggest stereotypical patterns of behaviour and both similarities and distinctions between arbitrary groupings that aren’t really there. In practice they’ve been found to make it harder to recognise autism in many individuals, and to do useful research about the spectrum. Because of this they’re being phased out, replaced with either ‘Autism’ (as is more common in the UK) or ‘Autism Spectrum Disorder’ aka ASD (as is already the single label in America).

Maybe when you think of your idea of the autistic spectrum you place people on it in different positions in the order that you consider to be most ‘severe’ or most in need of support, or perhaps to correspond with how visible and detectable their autism is.

But the other important thing to remember is that there isn’t any one factor in autism – it’s not a single trait of ‘autisticness’ but a collection of different traits that affect different people in different ways.

Yes, it’s possible to rank people in terms of who is most visibly autistic (by some standard) or who currently needs the most support to function in society (by some standard). And yes, there are sometimes practical reasons to want to do this when budgets are tight and services are being rationed to only those who need them the most.

However, it’s important to remember that any two people who are very ‘visibly autistic’ may be autistic in very different ways, and that a grouping of the most ‘visibly autistic’ and a grouping of the most in need of support and services won’t necessarily be all the same people. Some people who you consider to look very autistic might be better equipped to succeed or cope in some situations compared some other autistic people who you perceive to be much ‘less autistic’.

The Autistic Spectrum [A colour wheel showing a huge range of possible colours in a circle, labelled 'Autistic People']
(You could also label this ‘People With Autism’, ‘Autism’ or ‘Autism Spectrum Disorder’ depending on your philosophy or preference)
Perhaps a better metaphor for the autistic spectrum is a colour wheel with every possible colour available in a circular space. The only label this spectrum needs is ‘Autistic Spectrum’ or ‘Autistic People’, as everyone on the spectrum is an autistic person.

But without labels or a scale, how do we understand what any one ‘colour’ on this spectrum means?

Perhaps then an even better way to imagine the autistic spectrum, is not just a set of colours or ‘types of autism’ but also all the different autistic traits that make up how any one person experiences autism.

Maybe that circle of colours is like a colour picker with several different sliders under it, each of which can be used to control one aspect that makes up the colour selected. No one slider on the colour picker explains the spectrum above it. The only way to fit that diverse and complex circular colour space into a linear scale is to break it down into lots of individual traits, each with their own slider. Together the interactions of all the sliders combine to produce a unique colour, and similarly all the different traits of autism combine together in different ways to create all the diversity within the autistic spectrum.

A colour picker showing the colour wheel used in the spectrum illustration followed by sliders for red, green, blue, cyan, magenta, yellow and black. A yellowish green colour is selected and each of the sliders shows a different position making up this colour
(Don’t over-think this analogy, autism isn’t really about colours! The idea to take away is that it’s not any one slider/trait that defines someone’s autism, it’s all of them in combination)

Perhaps the sliders represent the traditional ‘triad of impairments’ and the traits within that. Perhaps they represent the person’s competencies when handling different areas, such as social, sensory, verbal, nonverbal and emotional demands. Some people may have strengths in some areas and difficulties with others. Some people may be severely impaired by some demands, but competent in others. Looking at traits this way may seem like an apparently contradictory mixture of strengths and weaknesses, but this unevenness is part of the nature of autism.

Of course this metaphor still isn’t complicated enough, because there are a lot more traits that define and affect autism than there are sliders on a colour picker. There’s also the factor of how people may learn to mask certain traits by developing coping strategies (perhaps we need an alpha transparency slider?) and how traits may change with time and by situation (gradients? intersection rules?).

However, unlike a linear scale or a limited set of labels and stereotypes, this is a much better foundation to build your understanding of autism from. It shows how varying traits (that can be at different extremes or anywhere in between) combine together to produce something unique within a wide range of diverse experience, all of which falls inside the autistic spectrum. It invites you to understand that there are differences and oh so much diversity, before moving on to the commonalities.

Autism is a spectrum, remember that.