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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2 thoughts on “So I might be autistic. Now what?

  1. Hi, I just watched Are You Autistic? today! I’ve been thinking about autism a lot over the last year or so. I have actually been assessed twice, both times over a decade and both times I’ve been told that I DON’T have it (just a shedload of other issues…). But however much I try to move on, it comes back. When I started my mental health blog, I mentioned my suspicions of being autistic and I got found by a number of autistic bloggers and started reading their blogs and what they wrote about experiencing autism resonated hugely with me, much more so than the dry DSM-IV (as per when I was assessed) diagnostic criteria. Plus, it went two ways: someone who runs a list of autism blogs asked to include me; when I said I don’t actually have a diagnosis, they said, for someone without a diagnosis “You do write about it a lot.”

    The stories of some of the women in Are You Autistic? and in this article on the BBC news site resonated with me. It seems that even though I’m a man, I have a more stereotypically female than male autistic nature.

    I understand the modern diagnostic criteria are different to when I was assessed and I have been thinking of being reassessed but I’m terrified of being told I’m neurotypical again. I know that sounds a strange thing to say, but an autism diagnosis would explain so much about me: my treatment-resistant depression, OCD and social anxiety would actually seem like the logical outcome of something ‘real’ rather than a over-reaction to very normal childhood stresses. Plus, I might be able to get help at work, as for the last year I’ve been in a job that is not ideal for me for reasons that keep bringing autism to mind for me. But then again, maybe the best thing would just be to find a new job – I don’t like making a fuss and I feel I’m doing enough “special pleading” asking for help with my depression.

    Sorry for such a rambling comment from a complete stranger! If it helps, I think we have a mutual friend – Matthew Kilburn from the Oxford University Doctor Who Society? (He linked to your Twitter account from his blog, which is how I found your blog.)

    Liked by 1 person

  2. I’m so glad to have read this – one of the reasons I nearly didn’t go through with assessment after a therapist suggested I might be autistic was that I didn’t present ‘typically’ even for a woman – most notably, although I have significant sensory differences I am largely hyposensitive, which I think substantially alters how I present on a surface level.

    I didn’t think I would be diagnosed – but I was! But had I been finding out about autism for the first time from the programme rather than from a therapist, I think I would have been in exactly the same position, seeing myself sort-of reflected in it but not completely.

    So, thank you so much for picking up where the programme left off, and covering the sheer diversity of the spectrum, as well as for all the practical information you’ve included here. I wish I had known sooner, and I hope if someone in the same position is reading this that you could potentially have saved them a lot of confusion and surprise 🙂

    Liked by 1 person

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