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.
In-depth exploration of neurodivergence and overlapping identities
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.
When you first meet me, you might not think that I’m autistic.
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).
As 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.
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.
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.
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.
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.
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’.
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.
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.