“For the first time, I felt like I belong” – Reflections on the NAS Women and Girls Conference

…Well. Where do I start?!

Earlier this week, Sam Ahern and I were lucky enough to attend the National Autistic Society Women and Girls Conference 2018 to talk about Are You Autistic?, misconceptions about autism and our general realities as autistic women. More importantly, I got to meet dozens of brilliant autistic women and others in the autism community (and put faces to lots of usernames!), share stories and strategies, be part of a massive conversation online and offline, and learn so much more than I could have expected. Here’s an attempt to sum up some of my initial takeaways from the event:

Anxiety is a huge part of our lives – and it really doesn’t have to be

Emily Swiatek, employment training consultant at NAS, provides a simple but effective description of anxiety: “In our heads, a little lizard brain still thinks a T-Rex is coming to eat us”. This was an overarching theme in conference discussions from the start. After the first talk, an audience member highlighted that clinicians often dismiss signs of anxiety in autistic people as “part of autism” – autism trainer Robyn Steward noted they should probably pay more attention to diagnosis criteria!

This is something I’ve heard time and time again in various contexts, but as Dr Catriona Stewart, researcher and chair of Scottish Women’s Autism Network, pointed out: “It’s not an inevitability.” The Twitter discussion on this is still going strong – many feel that their anxiety is linked to their autism and that all the accommodations in the world couldn’t change that, but all the same, they need support with that anxiety, just as a non-autistic person would.

Mindfulness isn’t necessarily what you think it is

Before the conference, when I thought “mindfulness”, I thought “sitting still in a quiet room, taking deep breaths, maybe counting”. But as Emily Swiatek highlighted, mindfulness in the sense of “being very aware of your surroundings” might be counter-productive for autistic people whose difficulty is that they’re already hyper-aware of their surroundings! In her training, Emily adapts mindfulness for autistic people by focusing the senses on something specific, namely chocolate:

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Photo credit: Lizzie Huxley-Jones https://twitter.com/littlehux/status/1057286162094657536

That sounds like a great idea, and if you want to encourage people to try mindfulness then chocolate is certainly a good place to start! But But it was later that night as I read Lizzie Huxley-Jones’ Twitter commentary – mindfulness as “directing our senses to something joyful” – that something else fell into place for me. I thought about something else I find joyful, music, and considered how you might play something familiar and try to focus on all the instruments and layers and tiny details and then the lyrics and how all that feels and then you don’t have to think about whatever else is going on and… wait a minute… that’s just Muse, right? I’ve just re-invented Muse. This is something I already do sometimes, and I’d never thought about it as mindful because it isn’t sitting still and taking deep breaths. Others on Twitter have described exercise and gardening in the same way. Perhaps there’s something to be said about adapting mindfulness by incorporating special interests?

Autistic people REALLY aren’t all the same

Given that we had a double-act presentation slot, Sam and I were keen to make clear that autistic people are as diverse as everyone else and even we have big differences, from education paths and career choices to skills and difficulties to travel preferences – early conversations consisted of Sam commiserating with others about how much of a nightmare the morning Tube is, then me adding “The trick is to accidentally develop a special interest in the London Underground”! Opening Twitter after our talk, in which we explored sensory issues and I inevitably brought weather into it, I was met with a discussion about high temperatures and low layers vs low temperatures and high layers. (Personally, I’m a low temperatures and low layers person – go hard or go home, I guess!)

I met autistic people of all ages, with a huge range of traits, from so many different backgrounds – there were writers, artists, doctors, teachers, academics, autism professionals (yes, you can be both!) and so much more besides. And that’s before I get started on the variety of special interests…

EVERYTHING is better with special interests

In the first talk, psychologist and researcher Dr Will Mandy noted that traditionally “female” interests are often overlooked by clinicians who associate special interests with particular stereotypes. I found the recognition of this issue really exciting, but not as exciting as the old D-Stock train from the District Line that featured on the accompanying slide.

With a line-up full of autistic women (Dr Will Mandy was the only man, and non-autistic speakers only presented alongside autistic speakers), it was bound to be the case that almost every session would be peppered with special interests, and the conference was all the better for it. Why just learn about one conference topic when you can also learn about E.T., trapeze, and crochet? Why just look at a 1-10 mood scale when you can have emotional regulation explained to you via the medium of Harry Styles? It doesn’t matter that the interests aren’t necessarily my own – the joy that each person clearly gets from them is incredible to see. According to Emily Swiatek, autistic people “get to have Christmas every day” – well, the new series of Doctor Who certainly feels like Christmas every Sunday! As activist Carly Jones MBE noted: “Special interests save lives”. Also, at least two entire human beings appreciated the Muse chat I shoehorned into our talk, which made me happier than is reasonable.

As someone diagnosed early in life, there’s a lot that I take for granted

I should point out that while earlier diagnosis is often a big part of what we strive for, it’s really a mixed blessing. In our talk, Sam explained that when she found out she was autistic aged 9, she was so happy and relieved that she told everyone at school – suffice to say, that didn’t go down so well with her peers. That said, because I’ve basically always known that I’m autistic, by the time I was an adult and working I had my sensory difference pretty much nailed down: this is who I am, this is how I process, this is what I need (that last one might be a particularly shaky grasp, but it’s there!). I was really shocked to hear Emily Swiatek say that most autistic women she meets in the workplace don’t know what their sensory differences are at all, because they assume – and are often told – that “everyone feels like that”. As a starting point, she suggests thinking about how you have your environment at home where you have control.

This surprise at realising other people didn’t think the same way cropped up in a few of the talks, and in the meantime they described years of mental health problems, misdiagnosis, feeling pressured into situations because “that’s what normal people do, so if I do it I’ll be normal” and, in an appallingly high number of cases, abuse. Many adults in the diagnostic process face questions about why they feel they need a diagnosis at this point in their lives when nothing is likely to change – as Robyn Steward points out, diagnosis is important for many because “it’s about knowing there’s nothing wrong with you.” Still, another theme of the day was the complete lack of support people receive after diagnosis – again, this is something I’ve heard far too many times.

Adjustments are there to be used!

When I’m overloaded, I’m often both useless at remembering the steps I can take to fix that and self-conscious about taking said steps. As we headed into lunchtime, I saw this tweet from Emily Swiatek: “…Check in with yourself on how you’re feeling, how your sensory needs are etc. Remember there’s a quiet room…” And so, for the first time ever, I found myself actually making use of the much-celebrated quiet room. It might sound silly, but being in a space where I could relax and eat with others without the hustle and bustle and most importantly without the pressure to talk (as much as I wanted to talk to literally everyone at the conference, if I have to keep it up constantly things will start going very wrong). I ended up having a short Twitter conversation with a couple of others at the same table, and you could see the Tube outside, so what’s not to love?!

At the end of our talk, I was asked a question about adjustments at university. I’m not sure I did the question justice (to cut a long story short, I was almost at the end of university by the time I got my act together about disability services) but it highlighted something that’s always frustrated me – everybody says you’re entitled to reasonable adjustments, but nobody says what they are! I picked up a few examples on the day that I’d never heard of before – for example, in her interviews with autistic women in a research study, psychologist Dr Sarah Bargiela provided the questions on flashcards so participants didn’t have to “hold all the questions in their head.” It was really heartwarming to see so many people tweet photos of themselves in their outfits before the conference started for the benefit of those of us who struggle with faces – another solution I’d never even thought of! – and the NAS staff kept seats around the edges for autistic delegates who might struggle in the middle of the crowds.

Simple adaptations can make a big difference – and yes, that can include CBT

In blogger and YouTuber Purple Ella’s talk on mental health, she made a brief reference to a bad experience with Cognitive Behavioural Therapy (CBT) prior to her eventual autism diagnosis – this was met with knowing grumbles in the room and a long stream of very similar experiences being shared on Twitter. CBT is often the default in mental health services because it’s effective for many people (and I’ve certainly found bits of the techniques really helpful around social anxiety), but this also leads to situations where autistic people get pushed into CBT that isn’t adapted for their needs, and too often this does more harm than good. This comes up time and time again in discussions around autism and mental health, and is an issue in dire need of recognition.

With that in mind, I found it interesting that Purple Ella also mentioned something that really helped her which often does form part of CBT – namely “evidence-gathering” to improve self-esteem, which she describes as “a leaky bucket” for autistic people. Later that afternoon, Emily Swiatek also gave an example of how she uses evidence-gathering (which was named as a CBT technique in the slides) to combat catastrophising and spirals of anxiety. In both cases, this was well-received offline and online. Something as simple as reframing the techniques to how they think as autistic people completely changed the perceptions of them for the other autistic people in the room. Scientific evidence is powerful, but often it’s these personal experiences that are more persuasive, especially for those who often find most people don’t understand them.

“…You mean it’s not just me?!”

When autistic people get together, this is always going to be a theme! Sam and I are now lucky enough to be able to give that feeling to other people, and it came through in the responses to our talk – particularly on how we mask, navigating the social maze (seriously though, why do people say events start at 9 if they really mean 10?!) and the issue of reasonable adjustments.

From my point of view, I resonated with a lot of the discussion about routines and the impact of change. Purple Ella noted that change can cause autistic people to lose existing routines, and “some autistic people wake up and think ‘Oh, a whole day?'” with no clue how to structure their time. It probably sounds a bit weird, but “Oh, a whole day?” is pretty much how heatwave time works for me – this summer I found myself filling evenings and sometimes whole weekend days with liveblogging Doctor Who episodes for a Facebook group I’m in with friends, because it’s fun but also because I had to fill time, because I had to stay distracted, because otherwise I might just notice it again. Elsewhere, autism consultant Sarah Hendrickx’s talk on survival strategies for autistic women mentioned the high number of people who have to go out accompanied to “give someone else responsibility to keep an eye on the traffic, the people” – these days, I can cross busy roads myself, but it tends to involve complete devotion to the green man in the crossing lights!

Autistic women deal with being autistic AND with sexism – and the harm extends beyond just women!

As you would expect from a conference on autistic women and girls, there was a big focus on the particular difficulties we face as women. In addition to the well-known discrepancy in diagnosis, the conference highlighted vulnerability to abuse, pressure to downplay intellect and “swottiness” (as Dr Catriona Stewart’s daughter told her, “it’s okay to be smart – just not too smart”), the sensory onslaught that is being a new mother, sexism in the workplace (Emily Swiatek noted that autistic women often lack the support network other women have, and our usual safe haven of the internet isn’t an option when employers Google!), clothing designed for fashion at the expense of practicality and sensory-friendliness and, of course, periods.

Of course, these things don’t just affect women. Almost all the speakers highlighted that a high proportion of autistic people are transgender or non-binary, a fact which is too often overlooked. It was also pointed out on multiple occasions that many autistic men mask, many autistic men present with more internalising behaviours, many autistic men go undiagnosed too. I know it sounds a bit like yet another “but what about men though?” at first glance, but in this case it’s part of a really important point – as Dr Will Mandy noted, when we talk about autism and gender we talk about averages, and contrary to increasingly popular belief, there isn’t a distinct “female autism” that’s specific to women!

Being in an autistic space feels AMAZING

The title quote is from author Laura James, talking about her diagnosis at the very start of the day, and that’s also how I’d sum up the feeling in the room! Not only were the autistic people I met all incredibly kind, interesting and most of all hilarious (who says we have no sense of humour?), it made such a difference that I didn’t have to constantly explain (or constantly hide) what I was thinking and how certain things might be affecting me. The NAS staff were also brilliant, and I particularly appreciated that they pro-actively helped us find spaces without us having to ask – frustratingly, the times when I need help are usually the times I can’t say I need help!

Of course, a conference is still going to be a conference – by nature, it’s a massive gathering of lots of people talking to each other all day – and there’s a strange irony of being made to feel so empowered and proud and happy to be autistic while at the same time having your autistic brain’s limitations thrown into sharp relief. At the end of the day, I basically got home and proceeded directly to bed, but that was okay because I think most of the others did the same!

It was a fantastic experience to be able to hear so many experiences and so much advice, and I left the hotel feeling a little bit different to when I arrived – you just don’t realise how much you’re masking until, all of a sudden, you don’t have to.

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So I might be autistic. Now what?

In my mind, the target audience for “Are You Autistic?” was undiagnosed autistic adults, some of whom will never have even thought about it before, who recognised themselves in the journeys of JP and Jo (pictured above). I hoped that someone might watch the show, find it resonating with them more than they expected, and maybe I’d get one message or see one tweet saying “I think this might be me, what do I do now?” and then I’d feel like we’ve done our job – so you can only imagine how I feel about losing count of them! Anyway, if that’s you or someone you know, read on for some possible next steps…

“I might be autistic, but…”

“…I didn’t really get this bit?” It’s worth noting from the outset that the autistic spectrum is huge and incredibly diverse. In short, you don’t have to be exactly like JP or Jo – I certainly can’t hear electricity, and as anyone who’s had to interact with me between May and September will tell you, I’m very good at talking about the weather!

“…surely everyone feels like that?” Something that really surprised me about Twitter’s reaction to the documentary was the number of autistic people saying “Wait, you mean most people can’t hear electricity?!” Your own way of processing the world is all you’ve ever known, so it’s surprisingly easy to assume things are just the same for everyone, especially when we can’t talk about it. Sometimes very well-meaning people say things like “everyone feels like that” because it can be comforting to know it’s not just you – if you often find yourself thinking “well if everyone feels like that, why are they all coping when I’m not?”, you might want to stick around!

“…am I “autistic enough” to be taken seriously?” If you really have to ask, then you probably are. You might be surprised by how often people who literally have the official diagnosis still get told we’re in some way “not properly autistic” by random people on the internet because a.) we’re not exactly like their neighbour’s cousin’s friend’s 5-year-old son or b.) we just had an opinion on something. Unfortunately a lot of people put more emphasis on “catching out” completely hypothetical “fakers” rather than actually listening to and addressing the issues being discussed, and that’s their problem, not yours.

Research, research, research!

You can’t cram all possible aspects of autism into 47 minutes of television – or one article, or one discussion, or one person’s experiences – so you’re likely to get a clearer picture from looking elsewhere. It might be helpful to start keeping a list of your possible autistic traits, which you can also add to as and when relevant real-life situations arise.

Look up the diagnostic criteria, but be aware this is likely to focus entirely on negative traits and may use outdated language. Look through the National Autistic Society website (in particular, here’s a link to the NAS page on adult diagnosis). Take a few of the many online quizzes – they’re no substitute for formal assessment, and again might be outdated, but they often use at least some questions from the more official screening tools.

Possibly the most useful resource of all, though, is the autistic community. Everyone is different and every autistic person presents differently, so talking to large groups of autistic people is a great way to get a wide range of possible traits (some of which might contradict each other – one person’s special interest is another person’s sensory hell). On Twitter (and other tag-based sites such as Tumblr), you’ll find us in the #ActuallyAutistic and #AskingAutistics tags. On Facebook, your best bet is autistic-only or autistic-led groups – most do accept people who only suspect they might be autistic, there’s always the option of leaving if you find it’s not for you. Always check the privacy settings – if it’s a “closed group” or “secret group”, only other group members can see your posts, but if it’s a “public group” then everyone might see your posts or even your likes! (For “closed groups”, others may be able to see that you’re in the group, so you might also want to hide the Groups section of your Facebook profile.)

Should I seek a formal diagnosis?

This is an incredibly personal decision, with lots of pros and cons to weigh up. Unfortunately, waiting lists can take years, and many who seek diagnosis find themselves being fobbed off by people who don’t necessarily have a detailed or up-to-date understanding of autism. Some adults who realise they’re probably autistic feel that they haven’t been disadvantaged by not having the formal diagnosis and decide they’re happy with the self-diagnosis. For the most part, autistic communities online accept this as valid too, and some people find that community is all they need to finally understand themselves.

On the other hand, a formal diagnosis is really the only way to know for sure and get the closure you might need. It might give you access to additional support (although, fair warning, there isn’t very much of it), correct previous misdiagnoses, or help you to receive the correct treatment or support for any existing diagnoses you have. If you disclose your diagnosis to your employer, school or university, they are legally required to make any reasonable adjustments you need for work or study. And, of course, that piece of paper should clear up any remaining self-doubt, especially in a world that can be so fixated on “catching out the fakers” and disbelieving others.

In the end, only you can decide what is right for you. My only advice is please don’t be put off by other people (or the nagging voice in your own brain) saying “it’s overdiagnosed these days” or “you’re jumping on the bandwagon” or “you’re taking resources from people who Really Need ItTM”. I’ve written here before about the overdiagnosis myth – in short, as you may have seen in the documentary, autism is often UNDERdiagnosed. After a public awareness event like “Are You Autistic?”, it might be the case that lots of people realise they’re autistic at once, but that doesn’t mean they’re jumping on the bandwagon – they just all became more informed at the same time. We also sometimes have a habit of acting like there is one single most miserable person in the whole world and only they deserve understanding and support, when that’s really not how it works – in this case, if you’re autistic you’re autistic, and all the underfunding and long waiting lists aren’t your fault!

What’s the assessment process like?

“Are You Autistic?” showed two people undergoing various tests based on cutting-edge research from multiple academics – so basically, the chances are your assessment will be very different. Here’s that NAS page on adult diagnosis again, because they know far more than me about this!

For most people, the first point of contact would be an appointment your GP. If you’re already in contact with healthcare services for something else, it might be worth mentioning your suspicions to them. If you’re a student, the easiest option is probably getting in touch with the disability service at your university or college. In any case, feel free to bring notes (this is why I suggested making a list!) and, as GPs may not necessarily have a detailed understanding of autism, it may also be helpful to bring copies of the guidelines for autism recognition linked on the NAS page above.

You should then be referred on to a more specialist service for assessment, and the details of this can vary widely depending on where you live – some people have one long assessment and find out the results on the day, others have shorter appointments spread out over weeks or even months. There will be lots of discussion about exactly why you’re seeking a diagnosis, and as seen in the documentary, they are likely to ask about your childhood – you may even be asked to bring a family member or friend who has known you from childhood, or have them fill in a questionnaire to bring with you. You might be asked to carry out some seemingly random tasks that (apparently) highlight how you think and process information.

Eventually, if it goes the way you think it will, you’ll get a diagnosis alongside a longer detailed report. Increasingly, diagnosis is shifting towards one umbrella term of “autism spectrum disorder” or “autism spectrum condition”, but depending on where you live, you might still get a more specific label like “Asperger’s syndrome” (that would be mine!). Despite the myths, it’s all autism (hence the shift towards umbrella terms) – I used to think of “Asperger’s” and “autistic” as a bit like “English” and “British”. By the time you get to this stage you’ll have seen a lot of debate about this and you’ll probably have a strong opinion of your own, but I wouldn’t get too hung up on the terminology – the main thing is you’ve got the diagnosis!

What happens next?

On the face of it, probably not very much! Whilst a diagnosis may qualify you for some additional support, the biggest change is likely to be self-understanding – something many of us take for granted. You can finally start learning where you struggle, what your meltdown triggers are and how to mitigate that, and working with your autistic brain rather than against it. It’s important to remember that if you are autistic, then you’ve always been autistic, and a diagnosis doesn’t change anything at all about who you are – it just helps to explain why you are who you are.

So, if you think you might be autistic and are wondering whether you should look into it further, I’ll leave you with the GIF I’ve been replying to those messages with:

A GIF from a viral video of actor Shia LaBoeuf shouting "Just do it!"

10 reasons to watch “Are You Autistic?” (by someone who already knows it inside out!)

…Okay, as one of Are You Autistic?‘s lead presenters I’m more than a little biased, but this does also means I’ve seen it, multiple times, and can’t wait until it finally goes out beyond autism circles and into the wider world of people who could benefit from its messages! So here are just a few reasons why, this Wednesday at 10pm, you should see it too:

1. You definitely know at least one autistic person. I’m not just saying that because most people who read this will know me, either – we now think 1 in 100 people are autistic, and with so many people going undiagnosed and horrendously long waiting list for those whose autistic traits are picked up on, that number could be much higher. There’s going to be someone in your family, friendship groups, school, workplace, somewhere who is on the spectrum – even if you don’t know it, even if they don’t know it – and a little understanding and acceptance can go a long way.

2. It’s presented by autistic people. To be clear, it’s Sam Ahern and I who introduce the show and all its segments, provide the voiceovers, interview the experts, and generally guide the neurotypical newcomers through our world – and it should go without saying that we discussed, changed and contributed to every single one of our scripts. It shouldn’t be so groundbreaking or hard to believe for autistic people to lead the conversation about autism in the media, but I think this makes Are You Autistic? stand out.

Georgia Harper (that's me!) and Sam Ahern on set.

3. Two-thirds of the autistic people who feature are women. Autistic women are usually under-represented if not ignored entirely in media, but you’re going to run out of fingers trying to count them on this show. We discuss underdiagnosis, masking, and how stereotypes prevent women from accessing the support they need.

4. You’ll also see some really cool idents. Come on, it’s a giant person made of the Channel 4 blocks! What’s not to love?

5. We look at autism from the autistic perspective. Too often, the only autistic traits discussed are those that happen to affect the neurotypical people around us, and autism is framed as “odd behaviour” with no consideration for what the autistic person is actually experiencing. We go deeper, exploring sensory processing and executive function as two adults who suspect they might be autistic undergo assessments – with TV presenter and token neurotypical person Anna Richardson learning with the audience along the way.

6. It’s an example of how positive change can be made when you take action. Ambitious about Autism’s Youth Council contacted the producers last year because we had concerns – and how they listened!! We turned a project that was neurotypical-led into a show that is autistic-led. As well as Sam and I presenting, five other Youth Patrons feature in Are You Autistic?, directly speaking about their first-hand experiences. We chose to directly engage and are all very proud of the outcome, and I hope it will inspire others to do the same.

The Ambitious about Autism Youth Patrons sitting in a row, preparing to film vox pops.

7. It’s on straight after One Born Every Minute. Apparently, millions of people really enjoy watching childbirth, and you can all keep watching for a bonus education on autism with no extra effort!

8. We’ll smash a ton of myths. Think you can always tell if someone is autistic? Wrong. Think “everyone’s a little bit autistic”? Wrong. Think autism is overdiagnosed and professionals are too quick to use the autism label? Wrong. Take it away, Sherlock:

GIF taken from an episode of BBC's Sherlock - everyone at a press conference receives a text (from Sherlock) which reads

9. It acknowledges autistic parents of autistic children for once! I don’t want to give too much away, but this frequently sidelined group is represented, in a way which also nicely shows the huge diversity of abilities and needs within the autistic spectrum.

10. You might just see yourself reflected in this programme more than you expect… I mean, probably not, but you never know! The way I see it, adults who are autistic but don’t know it are the target audience of this show – and if we can help one person to finally understand themselves, then we’ll have done our job.

Are You Autistic?” will air on Channel 4 at 10.00pm next Wednesday, 28th March 2018.