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!"

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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.

Why autism is much more than an “excuse”, and why it matters

A collage of three separate headlines. Clockwise from top-left: "DR MIKE SHOOTER: Yes, some children suffer terribly. But I fear many parents want them to be labelled autistic... just to excuse their own failings", "Autism is vastly over-diagnosed. It's the parents' way out: We're too quick to label difficult children, the veteran child psychiatrist Dr Mike Shooter says", "Do some parents use autism to cover up bad behaviour?"

Recently, my Twitter feed has been full of a whole series of articles and so on telling the world that conditions such as autism and ADHD are a.) Overdiagnosed Actually and b.) used by parents as an “excuse” for “awful and embarrassing behaviour” or as “something to boast about”.

…Yikes.

To be fair to Dr Mike Shooter, he’s got a childhood psychiatry book to plug, so it’s entirely possible that either he’s exaggerating his views for maximum interest, or the media are doing that for him to maximise interest in them. Still, though, the end result is the same: a load of “ARE WE DIAGNOSING AUTISM TOO QUICKLY?” headlines. Sadly, this narrative is still all too common – and as much as we’ve heard it all before, it can have a hugely harmful impact on how autistic and other neurodivergent people are (or rather, aren’t) diagnosed and supported in future.

In many cases, autism is UNDERdiagnosed. Unfortunately, it is common for people who seek assessment for autism to face waiting lists more easily measured in years than months . Although attitudes are improving, many people have to make multiple GP appointments, and face multiple dismissals, before they are finally offered a referral, making the process longer still. That’s a long time to wait when schools, employers, and other bodies insist on seeing an official piece of paper before doing anything to accommodate you. It’s frustrating to see some of the myths blocking access to diagnosis being repeated, particularly the suggestion that children who behave differently at home, school and other activities can’t be neurodivergent – many thrive in more structured environments, or “mask” their traits at great cost to their mental health or overall functioning, and subsequently struggle to get the support they need.

And that’s just those who recognise that they or their child might be autistic in the first place, in a society that still often sees autism as the Rain Man/Sheldon Cooper stereotypes. In recent years, we’ve seen a generation of autistic adults who grew up in a time when autism was totally unknown finally get the answers they need. Indeed, some parents and relatives of newly diagnosed autistic children discover that they are also autistic in the process. We now also know that restricted autism stereotypes have contributed to underdiagnosis of autism in women and girls, and that race and class are also factors that may prevent diagnosis. To say that autism is overdiagnosed erases all these experiences, and hampers attempts to reduce these problems.

Autistic adults exist. I really don’t understand why this gets forgotten so often. Autism is not a terminal illness, children grow up eventually, this is not a difficult concept. Some are only diagnosed as adults, some without parental support at all. Perhaps it’s nitpicking to point out every time someone slips into only referring to autistic people as “children”, especially given that in this instance it’s supporting a book about childhood, but it happens every time and this contributes to the continued missed diagnosis, disbelief and lack of support services for autistic adults.

Refusing to identify autism doesn’t make it go away. File under: “just because you can’t see it doesn’t mean it isn’t there”. Autistic people don’t suddenly become autistic because a doctor says so – people who seek an assessment are evidently already struggling in some way or another, and telling them they ~shouldn’t have to label themselves~ doesn’t solve anything. When even the most clearly well-intentioned people say “it’s the human condition” or “everyone has that”, I think “then I’m failing at life by not Just Dealing With It like everyone else is” – and it’s fleeting, because I know why, but many people don’t and internalise that message alongside all the other negative ways people react to autistic traits. With the prevalence of mental health problems in autistic people is already shockingly high, growing up undiagnosed is a particularly prominent cause of mental ill health. In this sense, labels are empowering – far from creating new problems, a diagnosis provides the language, tools and acceptance necessary to resolve existing ones.

Autism, ADHD, and “bad behaviour” are very different things. One of my big pet hates about how autism is portrayed in media is that it’s usually framed as “odd mysterious behaviour” from the perspective of a neurotypical outsider (often a parent, which contributes to the focus on autistic children to the exclusion of adults) with little thought for, y’know, what the autistic person actually experiences.

Autism is not bad behaviour. Autism, sometimes, can lead to sensory overload provoking a meltdown. Meltdowns are pretty awful for everyone involved, most of all for the person actually experiencing it. A diagnosis won’t magically make that go away, but it will help the person and those around them understand their triggers and find coping mechanisms. Waving it away as bad behaviour will often only make things worse.

Actively asking viewers to answer to “Do you think some parents use autism to cover up bad behaviour?” encourages people to shame others – the parents and the autistic people who will one day grow up to read those tweets and comments (if, of course, they aren’t doing so already). This isn’t just a fun interesting debate – it affects real people.

These attitudes can have a detrimental real-world impact. Autistic people aren’t just there to be talked about – we’re seeing it all too. Undiagnosed autistic people read these articles and are put off questioning it further. Parents of undiagnosed autistic children read these articles and go back to blaming themselves instead of being able to explore support for their child. Even some of those who ARE diagnosed might start the self-doubt all over again, or wonder whether other people think they’re making it up or annoying others, and might be less likely to ask for accommodations in future. Others who don’t know any better might take this at face value and disbelieve autistic people (and their families), which if they’re in any position of power means less access to support. The narrative that the autism “label” isn’t important in the absence of other diagnoses almost had a catastrophic impact in south-west London last year, when CCGs considered restricting diagnosis to those who also have additional conditions.

The usual defence for questioning disabilities is “I don’t mean the GENUINELY disabled people” – but it’s precisely those Genuinely DisabledTM people and their families who face the backlash in a focus on entirely hypothetical “fakers”. Which raises another question: why are we so desperate to disbelieve disabled people and their loved ones? Is it because if you accept someone is disabled you might have to actively do something to accommodate them? Is the stigma still so great that people find it difficult to see someone as “disabled” and “capable of doing things” at the same time? In any case, it’s about time we stopped trying to avoid the existence of neurodiversity and started focusing on acceptance.

The A Word, Series 2 Episode 6

This series finale sees Joe’s old school hold an end-of-year show, led by relatives Alison and Becky, and inviting him back to perform.  It was great to see everyone involved doing all they can to include Joe on his terms rather than aiming for “normal” (especially given Alison’s track record) – incorporating his special interests (admittedly not difficult in an already very musical production) , allowing him to “dress up as Joe” rather than struggle with the uncertainty and sensory overload of a costume, and even the entire family getting up on stage with him when the big night came. I would have liked to see more exploration of the sensory aspects of stage performance – the bright lights, the noisy rehearsals, the expectant faces – but that side of autism has at least been covered elsewhere in the series, notably through Joe’s ever-present headphones.

Another advantage of this setting is the return to prominence of Joe’s former classmates, who are often far more accepting than the adult characters and demonstrate that Joe doesn’t need to change who he is in order to make friends. I was a little uncomfortable with Ramesh noting that “some people think gluten is bad for autism” without going on to dispute it (which would be entirely consistent with his wise-beyond-his-years character), given that many people still hold that belief and further restricting the diet of children who are often already limited in what they will eat can be dangerous,  but it is evident that he and Bill do not view Joe’s autism as a problem, speaking to him as they would to any other child.

It was a little jarring, then, for Becky to assume that “one day, I will be the only person Joe has in the world” later in the very same episode. In a society where accessibility and support for autistic adults are often even more limited than for children, Becky’s concerns are very real (if a little premature – Joe’s only seven, who knows how he’ll develop as he gets older?) and are no doubt shared by real-life siblings. It only becomes a problem when the focus is almost entirely on autism as a “burden” on neurotypical relatives at the expense of the autistic person themselves – and unfortunately, that framing is also reflected in the vast majority of media representations of autism.

Similarly, whilst many of Alison and Paul’s marriage problems have very little to do with Joe, and the range of ongoing storylines such as this continues to be a strength, I can’t help but be reminded of the “autism ruins relationships” trope that has also formed a wider media stereotype. Their arguments often refer to an “all this” that can too easily be substituted for “Joe”, and the general marketing of The A Word as a drama about autism doesn’t necessarily help matters. Having said that, as with previous episodes, I appreciated the camera angles making clear the impact of Joe witnessing these arguments (in this case, thanks to his headphones, seeing but not hearing). This is stressful for any child, but autistic children are too often talked directly about in their presence and assumed not to understand – Joe’s parents have been guilty of this in the past, and this week I was pleased to see them actually realise and respond to Joe watching on.

A recurring theme in this episode – and, to some extent, the series as a whole – is summed up by Ramesh: “What will you do after?”. Joe’s sudden exit in response, and Paul’s confession that he doesn’t see future possibilities for Joe (gee, thanks) echo many real-life conversations and, as a recent graduate currently grappling with that question myself, highlighted something strange in the way the issue is handled: with a lot of hand-wringing and Deep ConcernTM over the future of autistic children, yet still very little acknowledgement (and therefore support) of the autistic adults they will become in that future. Children like Joe can have similar possible futures to children like Emily, but only if we work to tackle the barriers faced by autistic people in the present. On the plus side, Mark’s growing independence and hopes of going to college provides a positive counterpoint (and his previous meltdown scenes will hopefully mean he can’t be dismissed as “but you’re so high-functioning”, as real-life autistic people in his position often are), and at least Becky later acknowledges that when Joe is older he might travel and go on to university as she is about to do.

Throughout these blog posts, I’ve tended to focus on the representation of autism sometimes at the expense of other aspects of the plot – and the finale, aiming to go out with a bang, features particularly dramatic moments which you’ll have to watch for yourself! Nevertheless, The A Word does position itself as being about the ups and downs of raising an autistic child, and in a climate where so many portrayals of autistic people do more harm than good, it is crucial for such a high-profile drama to get it right. Unfortunately, too often that hasn’t been the case so far, but for the most part I would say series 2 of The A Word has at least been an improvement on the first. With many now keeping their fingers crossed for a third series, and an ending ambiguous enough to suggest that will happen, I just hope the understanding and acceptance of autistic people on the part of all those involved in The A Word continues to grow as Joe does.

The A Word, Series 2 Episode 5

This week, The A Word came perilously close to self-awareness.

Nicola has prepared a film highlighting Joe’s autistic traits for a presentation at work, much to Paul’s anger: “He’s a syndrome now, is he?” “She’s turned our little boy into a freakshow!” “I’m not having Nicola use Joe to get a foothold in the autism industry!” Most, if not all, of the footage shown from Nicola’s film is taken from last week’s episode of The A Word. The irony of this was not lost on me.

We then see the fallout of the difficult position Joe’s parents are forced into, and everyone in the family has a different opinion – everyone, that is, except Joe, who despite being the subject of the film is not asked about it once. Unfortunately, this is a recurring theme not only within The A Word but in real life, as recently highlighted by the controversy surrounding Judith Newman’s To Siri With Love and resulting #BoycottToSiri hashtag on Twitter (this brilliant Twitter thread by Marie Porter sums up the problems with invasion of privacy).

Nicola’s intentions are good, and I was pleased to see discussion of the misrepresentation of autism as a binary and the fact that many autistic people “show a social face to the world”. However, things go downhill from there during the presentation, with stimming framed as a “retreat” and “reverting… despite parental intervention and attending a specialist school”, as if natural and harmless movement is a bad thing to be trained out. It’s worth noting that when Nicola explains stimming as “comfort”, what she means is “not literally having a meltdown in an overwhelming and confusing neurotypical world”. At the same time, we see Paul’s attempts to stop Joe rocking as he watches TV at home, resulting in Paul trying to physically restrain Joe who then walks off – and for what? Why does rocking being a stereotypically autistic behaviour make it a bad behaviour?

Things then go from bad to worse when, in an argument between Alison and Paul, Paul blurts out “Does that mean I have to pretend his autism isn’t a burden?”  and “I love Joe, I do, but I hate his autism”. Thankfully, Joe does not appear to be in the room at the time,  but too many autistic people hear or read comments like this from their loved ones. To give credit where credit’s due, these remarks are firmly challenged (and by Alison too, whose attitudes have clearly progressed since the first series), but unfortunately this is still how a lot of people really think. It’s worth considering this alongside sister Becky’s situation, with all the adults in agreement that she will go to university and her saying otherwise is just acting up or a phase – the details may be very different, but in both cases involve the Hughes’ refusal to accept that their children are not exactly who they wanted them to be.

Alison says of the film about Joe “It was watching other people watching him, y’know?” Inadvertently, she sums up the experience of watching shows about autistic people but clearly not by or for autistic people. This episode ends with some really lovely footage compiled by Paul of Joe having fun and being himself, with autism and autistic traits referred to only when relevant, and that’s exactly what autistic representation should be – it just feels a little hollow when, the rest of the time, The A Word doesn’t quite get there.

The A Word, Series 2 Episode 4

Much like the previous episode of The A Word, the fourth instalment of this series is a relatively quiet one for Joe as the plot switches between locations – while Joe experiments with his new bicycle at home, parents Alison and Paul head to Manchester in an attempt to rebuild their relationship. It’s also worth noting that the other confirmed autistic character, Mark, is not seen on screen at all this week, only being heard playing drums upstairs towards the end of the episode. As discussed last week, I don’t think this focus on the wider cast is necessarily a bad thing, but in the context of media representation of autism often prioritising neurotypical family members over the autistic people concerned, and in a show promoted on the basis of autism, it’s important that The A Word does not gradually lose sight of the characters it should be exploring.

I was very pleased to see the return of the traditional music-based introduction on the road, which also served to re-introduce Joe’s bicycle from last week. I also enjoyed Eddie’s criticism of the assessment questionnaire as narrowly focused and deficit-based: “The measuring, assessing, the things he can’t do… measuring against who? Against us?” The constant focus on “deficits” (which, as Eddie says, are only deficits in comparison to a neurotypical standard) sets autistic people up as lesser from the start by failing to capture our strengths. In Joe’s case, his encyclopaedic knowledge of music is the obvious example, but this episode’s setting with Eddie and Nicola also highlights his growing attachment to new cousin Emily and, in turn, just how loving and caring he really is.

In an attempt to spite the questionnaire and focus on what Joe can do rather than what he can’t, Eddie sets the goal of teaching Joe to ride his bike without stabilisers – but throughout the episode, it remains unclear whether this is what Joe wants or simply a way of making his relatives feel good. We are initially led to believe that Joe’s gradual exploration of the bicycle, spinning the different parts, is “processing” the removal of the stabilisers, until older sister Becky says what I’d started thinking: “Is this him still processing, or is this him telling us he doesn’t want to ride the bike?” While the answer remains unclear, it is important to note that not everything an autistic child does should be framed as part of slow progress towards “normal” – some things will be different, some kids will just prefer spinning the wheels to riding them, and that’s okay. In the same vein, it was interesting to see the contrast between Eddie’s initial delight and Joe’s fear as he tries to ride away for the first time, echoed late by Paul’s amazement as Joe finally cycles off on his own at the end, swiftly followed by a declaration of “I’ve done that now!” and walking away with headphones in tow. It’s a huge achievement, but who was it really for?

As ever, there were a couple of unfortunate lines, and Paul responding to a difficult question from Alison by mimicking Joe’s usual “let me see now…” made me particularly uncomfortable – with Joe not even present, it was clearly a case of laughing at him rather than laughing with him. It also carries the implication that Joe uses that phrase to avoid the question, as Paul is doing, rather than to buy processing time or simply making use of the fairly limited verbal scripts he has to communicate with.

All things considered, though, I didn’t find much to complain about in this episode or the last – I just hope that hasn’t come at the expense of sidelining the autistic characters who are supposed to be leading the way.

The A Word, Series 2 Episode 3

[As usual, spoilers to follow!]

The main thing that struck me about this week’s episode of The A Word, a drama about autistic child Joe, was that there wasn’t very much of autistic child Joe – and that isn’t necessarily a bad thing. If there is a plus side to the unending focus on how autism affects everyone other than the autistic person (which might be okay if it wasn’t replicated in virtually all portrayals of autism in media), it’s the development of a strong set of supporting characters. I also find that the more nuanced representations of autistic people tend to come where autistic characters are included in a general setting rather than specifically in programmes about autism – Community‘s Abed Nadir being one famous example – and this episode gives viewers a chance to see Joe as part of the wider world rather than just as a set of diagnostic criteria. Having said that, The A Word does position itself as a programme about autism, and as ever, with that comes the risk of erasing Joe from his own story.

However, Joe is no longer the only autistic character present. The introduction of Eddie’s possible new love interest Holly made me wonder if she would also turn out to be autistic, at least until she was compared to ex-wife Nicola. I’ve previously wondered the same about Nicola, but so far it seems unlikely that the plot will pick up on the autistic traits of either character, which is a real shame given the under-representation of autistic adults and particularly women in the media. On a more positive note, the increasing role of Mark (played by autistic actor Travis Smith, who recently took part in a Twitter Q&A for National Autistic Society) is a huge asset. At first, Paul seems unable to see past Mark’s previous meltdown, only joining him and Sophie at a gig reluctantly after trying in vain to find an excuse to get out of it, but thankfully that doesn’t last for long…

I really enjoyed the gig scenes –  in all honestly, the noisy, crowded bar didn’t exactly strike me as the best place for Mark to be and I’m surprised the sensory aspects were not directly mentioned, but of course all autistic people are different! It was great to see Paul’s assumptions being challenged as he saw Mark’s personality and most of all his capacity to have fun and enjoy the music, as well as the others accepting and respecting Mark’s need to avoid conversation without it being framed as a tragedy. This also made sure the focus on music wasn’t too damaged by the lack of Joe’s usual introductory singing, no longer feasible with the change of school. It’s interesting that Mark’s (and indeed Paul’s) love of music is not pathologised in the same way that Joe’s often is, for the simple reason that Joe expresses this in a more stereotypically “autistic” way – special interests are often seen as harmful because it’s an autistic trait, when in reality they are a huge source of joy.

My main complaint this week is the use of the tired “autism tears families apart” trope, not once but twice within the space of a single episode.  It could have been much worse than it was – Sophie blames the breakdown of her marriage on the judgement of others rather than Mark himself, whilst the brewing tension within the Hughes family seems to stem from the separation as a consequence of Joe changing schools – but again, this comes up repeatedly in media representations of autistic children, creating another harmful stereotype and reinforcing the view of autism as a tragedy. Incidentally, if “the change with Joe is taking a toll” on Alison and Mark, what kind of toll is it taking on Joe, who we know particularly struggles with change? Has anyone asked? Does anyone care?

Joe remains the backbone of The A Word‘s main plot, and I assume he will return to centre stage in the second half of the series. Meanwhile, this week’s treatment of Mark in particular shows the writers are very capable of portraying autism as something other than a problem to be fixed – I’m keeping my fingers crossed that they will not return to those same traps as the focus returns to a younger and more “visibly autistic” child…