Category Archives: General-overall

Blaming trans identities on autism hurts everyone

Originally written for the Huffington Post Blog.

There has recently been a lot of media attention on the connection between being transgender and being autistic. The focus of much of this attention is Dr Kenneth Zucker, a psychologist whose gender clinic was closed down in 2015 for practising reparative therapy on children – behavioural therapy with the aim of ‘training’ children not to be transgender. He has been outspoken about his views that children with gender dysphoria are often autistic, and the implication that this somehow means they are not truly transgender.

Blaming trans identities on autism like this is directly harmful in many ways. Not just to autistic transgender people, but to other autistic people, other trans people, and to those who are neither.

It hurts autistic people

To blame trans identities on autism is to say that autistic people cannot understand or be aware of their own gender. If an autistic person cannot know they are trans, how can they know they aren’t? How can they know anything about themselves?

When a person’s gender is doubted because they are autistic, this paves the way for removing autistic people’s agency in all kinds of other ways. If we can’t know this central aspect of our identity, we surely can’t know how we feel, what we like, or who we are. In short, it implies that we are not truly people, and that our existence, experiences, and identities are for other people to define. This is just another facet of dehumanising autistic people, and gender is certainly not the only area in which this happens.

It hurts transgender people

In itself, the very urge to find a ‘reason’ that someone is transgender is a result of believing that being transgender is a problem, and that it would always be better not to be. The fact that clinicians like Zucker are focused on why someone is transgender, instead of focusing on what kind of help they need and how to best provide it, demonstrates clearly the belief that it is fundamentally bad to be transgender.

Not only that, but the belief that it’s even theoretically possible for anyone besides the individual in question to know what someone’s gender is. That’s just not how gender works! No-one really understand what gender is, or what it means, or where it comes from. The only thing we know for sure is that it’s internal, subjective, and personal. You can’t prove or test someone else’s gender any more than you can prove or test their favourite colour. The idea that it can be tested is constantly used to invalidate trans people. Our genders are doubted or disbelieved if we fail to adequately ‘prove’ ourselves to everyone else – if we express too many or too few gender stereotypes, if we are too old or too young, if we claim to be nonbinary or our description of our identity is too complicated or confusing.

It hurts autistic transgender people

When Zucker and others like him talk about autistic trans people, it is entirely with the implication that a person cannot be both. If a child goes to a gender clinic for dysphoria and is found to be autistic, the assumption is that they therefore must not be transgender. Their entire experience of gender is blamed on autism and brushed off as an arbitrary ‘fixation’.

Perhaps less common but equally damaging is when problems related to autism are blamed on the fact someone is transgender, rather than vice versa. If a transgender person seeks support or assessment for autism, any autistic trait they point out may be brushed off as a result of being transgender. The assumption people make in these cases is again that it’s impossible for someone who is transgender to also be autistic.

But autistic transgender people do exist. I am right here, existing – so are many of my friends. And if anecdotal evidence isn’t good enough, there is increasing research showing a correlation between being transgender and autistic among children and adults.

We don’t just exist, we exist disproportionately. And we’re not going anywhere. Autistic transgender people’s needs are unique, perhaps complex, perhaps poorly-understood. But the solution to the ‘problem’ of autistic transgender people is not to deny our existence, it’s to accept and learn about it.

It hurts everyone else

Much of the concern over autistic and transgender people – particularly children – seems to be rooted in worries for people who are not those things, but falsely believe that they are. If a child becomes mistakenly convinced that they are transgender, that they will be forced into life-altering hormones and surgeries. Or if a non-autistic person believes they are autistic, that they will be permanently labelled and coddled with no hope of change.

But those things are only a risk if the people around them are enforcing strict binaries and preventing harmless self-exploration. If a child mentions not feeling like their birth-assigned gender, and the next day they are put under the knife for permanent and risky surgery – yes, of course that would be bad. If a child mentions not feeling like their birth-assigned gender, and the next day they are forced into behavioural modification therapy to stop them from expressing those feelings – that is bad too.

Those two approaches are not the only options, though. The best option is to allow someone to explore their feelings, support them in gaining self-understanding, and accept their identity whatever it turns out to be. It is not complicated, and it’s only scary if you are still holding onto the belief that being either autistic or transgender – or, perish the thought, both – is a terrible thing to be. Which it’s not. I am, along with countless others like me, living proof of that.

How to make your event autism-friendly, part 2: sensory needs

Posts in this series:
Part 1: Introduction
[Part 2: Sensory needs]

Sensory needs tend to be fairly hit-and-miss in how well they are accommodated. People with little or no understanding of autism sometimes have no idea that sensory differences are even relevant. People with slightly more understanding often have good intentions but make changes based on misinformation or simplifications. The fact is, just like in all areas, there is a huge range of variation in sensory needs among autistic people. There’s no simple approach to accommodating us.

Autistic people’s brains are wired differently in ways that mean we experience sensory input differently to non-autistic people. That covers anything from synaesthesia, over- or under-sensitivity, specific sensory ‘intolerances’, perceptual distortions, strong preferences or aversions to using particular senses, and more.

The easiest of these differences to understand (as well as one of the most common) is about comfort with levels of input. Everyone – autistic and otherwise – has a comfortable range of input for each sense. For example, you have a comfortable range of temperature – if you’re much hotter or colder than your comfortable range, then you’ll be unhappy. Similarly, you have a comfortable range of volume – if it’s too loud you might get a headache or feel stressed, if it’s too quiet you might be unsettled or anxious.

Most NT people have a pretty similar range of comfortable input. The point at which a sensation is “too much” or “too little” is mostly the same from one NT person to another. And there’s generally a pretty good correlation from one sense to another, too.

NT input levels

In comparison, autistic people tend to have much more varying levels of comfortable input. That means their comfortable range might be a) much narrower or wider than the NT average, and/or b) offset higher or lower than the NT average. Not only that, but the comfortable range in one sense may be offset  or expanded in one way, and the range in a different sense might be offset completely differently. All in all, autistic sensory experiences are a classic example of how we tend to occupy the extremes of any bell curve you care to mention.

Autistic input levels

But different comfortable ranges are not the only thing that can be different about autistic people’s sensory experience. There are also all kinds of even more specific and individual differences. It’s pretty common to have what I think of as sensory ‘intolerances’ – specific types of sensation which are unbearable, regardless of the intensity of input. For example, a person might react very strongly towards one or more particular textures, tastes, smells, sounds, etc. There’s also the opposite – particular types of input which a person craves or enjoys a great deal. And just as before, you’ve guessed it, there’s no pattern or predictability to these. One person’s intolerance might be another person’s favourite sensation.

Another fairly common experience is to have trouble with processing certain types of sensation. That may apply to just one sense – many people have auditory processing issues that make it hard to understand speech or to distinguish between different sounds. Or it might be with all sensory input – having too much input in any combination of senses can be overloading and make it difficult to process or interpret anything else.

Putting it into practise

Hopefully you now have a general understand of how autistic people’s sensory experiences differ from neurotypical people’s, as well as how much variation there is across individuals. Now it’s time for some advice on how to apply that understanding to making your event accessible for autistic people. I’m going to divide this into some general principles about how to approach things, along with specific examples and advice.

Less is more

We’ve already gathered the fact that autistic people aren’t all over-sensitive or all under-sensitive. But in spite of this, it is important to reduce input as much as possible. In general, it’s worse to have too much input than not enough. If you don’t have enough input, you might be bored, restless, or uncomfortable. It’s not nice, but it’s generally possible to handle it. You can find your way to a situation with more input as quickly as possible, or provide input for yourself (who hasn’t tapped their fingers while bored in a waiting room?).

In contrast, having too much input can be actively dangerous. When a person is overloaded, they may partially or completely lose the ability to process further input. That means they could be disoriented, may become unable to understand speech or other communication, and be incapable of finding their way safely to a more comfortable environment. They might also struggle with internal processes, meaning they could have trouble making decisions, understanding and remembering what’s happening, or expressing communication. That includes being able to recognise and express the fact that they are overloaded and need help. This can be terrifying and dangerous. In comparison, the risk of feeling bored or restless is greatly preferable.

So, the safest way to deal with this is to make it easy for people to avoid input as much as possible. Any area or activity which is necessary or unavoidable, should have its input as low as it feasibly can. That means:

  • Whatever public or central areas the events are taking place in.
  • Any corridors or routes between those places that people will need to take
  • Any facilities people may need to use (toilets, cafés, etc).

Any location that someone attending the event might want or need to be in, in order to fully experience the event.

What is unnecessary input?

  • Sounds like radio, music, or audio announcements.
  • Noisy tools, machines, or activities.
  • Crowds or people talking.
  • Videos, moving or flashing lights.
  • Attention-grabbing images, objects, and displays.

At the event I went to that prompted this series of posts, the corridors of the venue were full of ‘things’. There were stalls and displays with people offering leaflets or selling things, as well as benches and tables dotted around where people would sit and socialise. This made it impossible for me to move from one part of the event to another, without being bombarded with input and overloaded.

Even the entrance of the venue was overloading. Right inside the front doors at registration time, there were stalls along the walls and a huge crowded queue filling up the space. You couldn’t even get in to the event without a sensory assault. I can’t bear to think about how many people might have arrived, taken one look at the entrance area, and left immediately.

The ideal low-input location is, essentially, ‘boring’. As little as possible for you to look at, hear, or pay attention to. Remember, this doesn’t mean there won’t be input for the people who want it (more on that later). But it means people who can’t handle input can experience the event with as little as possible.

Choice of intensity

We’ve covered the main areas of the event, and made them as safe and comfortable for everyone as we can. Now it’s time to provide the choices which will allow anyone to find an enjoyable and comfortable level of stimulation. There need to be multiple places where people can go to find different levels of input. The simplest version of this is to have a low-input room, and a high-input room.

The low-input room should have all stimulation reduced even more than in the main areas, and it should be strict. This room is for people to go to when even the quiet and comfortable main areas are too overloading! There should be no talking, low lights, no noise, and no moving lights, images, or objects. It should also ideally provide comfortable places for people to relax while they are in there. That means things like seats, cushions, and plenty of space to move around the area without bumping into things or each other.

The high-input room should have no restrictions on the input people can bring to it. This room should be able to accommodate people who need any level of input to be comfortable, no matter how high! People should be allowed to talk, shout, clap, make noises, jump around, and do whatever they need to give themselves enough stimulation. There should also ideally be sources of input for people to use if they need – things like sensory toys, lights, things to touch, move around, and play with. There should also be plenty of space because people may need to take up space to be comfortable, and don’t want to risk hurting or making each other uncomfortable.

Having these two options is the ideal minimum, but more is still better. More different levels of intensity and separate levels of intensity for different senses would be even more ideal.

Choice of format

This final point covers all the individual differences that don’t fit into just being over- or under-sensitive to one sense or another. Things like processing issues or specific intolerances mean that certain types of input may be difficult or impossible for a particular person to use or enjoy. So, choice is the key here too.

Whatever information, input, or experiences are provided at the event, should all be available in as many different formats as possible. If there’s a lecture, the slides should be available as a handout for people to read at the event (not sent out as an afterthought later). If there’s a written timetable, a visual representation should be offered too. If there’s a map of the venue, arrows or directions in words should also be provided.

All of these changes will allow autistic people with specific processing differences to take in the event in their preferred way. If someone finds it impossible to concentrate on or process spoken words, they can still appreciate a lecture by reading the slides or written summary. If someone is unable to understand a visual diagram, they can navigate the venue by using a different format of directions. These options aren’t just autism-friendly, they are vital accommodations for people with all kinds of disability. For example, people with hearing or visual impairments will benefit from having information available in multiple formats. Accommodations like this have no downside for anyone. No-one attending your event will suffer by being offered a choice of formats to experience.

Conclusions

Autistic people’s sensory needs are hugely varied and cannot be simplified. But accommodating those needs can be simple. There are only three basic ideas you need to remember when planning your event to be sensory-friendly:

  • Minimise unnecessary input in all necessary or main areas – make it ‘boring’.
  • Provide a range of possible input levels so that everyone can find their comfortable range – ideally at least a low-input room and a high-input room.
  • Provide all information and activities in as many formats as possible, so that everyone can experience the event in the best way for them.

Even these ideas can be simplified back to the basic principle: choice is key. People are all different, and autistic people sometimes especially so. The key to accommodating us is to recognise that we are all different, and give us all the option to find our own comfort.

Inclusive autistic traits

Problems

Autism is big and messy and confusing, and no-one really understands it. It’s difficult to make a good summary and description of autistic traits, because generally no-one can agree on what autism actually is. But even taking that into account, I’ve never read a satisfactory article or leaflet summarising and describing autistic traits.  Every description I’ve ever read suffered from at least one of these problems:

  • Wrongly weighted. So many descriptions of autism written by neurotypical people focus completely on social traits. Often autism is described as an entirely social thing, and any other differences are considered incidental if they’re mentioned at all.
  • Vague. The “triad of impairments” is the worst offender here. It divides social traits arbitrarily into “interaction”, “communication”, and “imagination”, but there is absolutely no clear distinction between those categories. They’re meaningless and useless divisions that don’t remotely simplify the description, and so they serve no useful purpose – they just add confusion.
  • Pathologising. This is so extensive it’s barely worth mentioning. Descriptions of autism almost universally describe it as a disorder, illness, or disease, and the traits as symptoms and deficits. This bias is both inaccurate and harmful.
  • Restrictive. Autistic people are so incredibly varied. And yet often, the only acknowledgement of that diversity is a mention of “both ends of the spectrum”, functioning labels, or a comparison of Asperger’s and classic autism. Not only are these trivial attempts at expressing the variation between autistic people, they are actively harmful in their own right.

Solutions

So, I’ve written my own. This isn’t a set of diagnostic criteria, because I don’t know how to diagnose autism. It’s my best attempt at an inclusiveaccurateuseful, and value-neutral, description of autistic traits and autistic people.

A lot of the things I’ve written feature directly opposite examples, like “may hate X” and “may love X”. This isn’t a mistake, it’s a reflection of how varied autistic people can be. Often, autistic people occupy extreme ends of the bell curve in any trait – but not necessarily the same end. Because I wrote this list to be inclusive, no autistic person will have every trait on it. That would be impossible, since many of them are mutually exclusive!

The point is to include the widest possible range of  autistic traits, not the minimum range of criteria needed to define autism. Instead of showing what things every autistic person will have in common (which would result in the kind of pitifully small and generally useless descriptions found elsewhere), this list intends to show you the greatest diversity you can expect to encounter among autistic people.

The list

With all that covered, let me get to the actual list. It’s divided into three broad categories of traits: social, sensory, and cognitive. These divisions are not perfect, but they’re the best way I’ve found of categorising, and they make it easier to understand the list. Each category is divided into sections (numbers) and subsections (letters), which each contain a list of specific example traits.

Social

  1. Differences in body language and nonverbal communication.
    • A. Different use of eye contact.
      • May use eye contact more or less frequently than others.
      • May use eye contact only in specific situations (e.g. only with familiar people, or only with strangers).
      • May use eye contact in different ways or at different times than others.
    • B. Different use of vocal tone.
      • May use less variation in tone than others, or not use tone deliberately to add meaning.
      • May use more variation in tone than others, or have a ‘sing-song’ quality to speech.
      • May speak more loudly or quietly than others.
    • C. Different use of gestures and body language.
      • May use fewer gestures than others.
      • May not use body language deliberately to communicate.
      • May use different types of body language than others to communicate.
      • May use gestures more often than others.
    • D. Different use of facial expressions.
      • May use less variation in facial expression than others.
      • May not deliberately use facial expressions to communicate.
      • May use different types of facial expressions from others.
      • May use more expressive or extreme facial expressions than others.
  2. Differences in verbal communication.
    • A. Different use of literal and metaphorical communication.
      • May use entirely literal language.
      • May use unusual types of metaphor and analogy.
      • May focus on precision and accuracy in words used.
      • May use words to have different meanings than others.
    • B. Different use of speech.
      • May have difficulty speaking in certain situations, such as under stress.
      • May not use words at all.
      • May use echolalia (repeating specific words or phrases) to communicate.
      • May have a strong preference for text-based communication or difficulty using speech.
      • May have a strong preference for speech or difficulty using text-based communication.
  3. Differences in interaction and relationships.
    • A. Different desire for relationships.
      • May not want or need social relationships much or at all.
      • May want specific types of relationships but not others.
      • May form unusual types of relationship dynamic or be less bound by social norms.
      • May be very reliant on social norms and rules to guide relationships.
    • B. Different preferences for groups.
      • May need one-to-one interactions and struggle in larger groups.
      • May need larger group interactions and struggle one-to-one.
      • May need more structure and rules in group interactions.
      • May find presenting to crowds easier than reciprocal interactions.
    • C. Different preferences for interactions.
      • May prefer practical and pragmatic interactions or have difficulty with unfocused interactions.
      • May not be able to focus on interacting at the same time as other activities or inputs.
      • May prefer parallel interactions or have difficulty with direct interactions.
    • D. Different social instincts to other people.
      • May have trouble communicating with others, especially non-autistic people.
      • May be drawn towards other autistic people for relationships.
      • May be socially outcast by others.
      • May feel like part of a different culture.

Sensory

  1. Differences in sensory sensitivity.
    • A. Over-sensitivity to certain senses or specific sensations (e.g. bright lights, specific textures, strong smells, loud noises).
      • May experience pain at sensations which others do not strongly react to.
      • May become ill or uncomfortable at sensations which others do not strongly react to.
      • May be distressed and want to avoid or escape sensations which others do not strongly react to.
    • B. Under-sensitivity to certain senses or specific sensations (e.g. pain, temperature, taste).
      • May not notice sensations which others usually react to.
      • May not be able to distinguish between sensations which others usually can.
      • May need more intense input in a certain sensation than others usually do.
    • C. Narrower comfortable range of certain senses or specific sensations.
      • May struggle to find a comfortable intensity of input.
      • May easily become over- and under-sensitive to certain sensations.
      • May need very particular type or intensity of input.
  2. Strong enjoyment, desire, or need for certain types of sensory input. Demonstrated by stimming (self-stimulation) behaviour.
    • A. Visual stimming.
      • May stare at certain lights, patterns, shapes or colours.
      • May stare at certain moving objects, changing or flashing lights.
    • B. Pressure stimming.
      • May apply pressure from weighted objects.
      • May sit or lay in postures which apply pressure from body weight.
    • C. Vestibular stimming.
      • May move in certain ways like rocking or spinning.
      • May seek activities which involve swinging, fast acceleration, or other types of movement.
    • D. Proprioceptive stimming.
      • May move body in specific ways such as hand flapping, waving, twirling hair.
      • May touch and hold onto objects and surroundings.
    • E. Tactile stimming.
      • May be drawn to the feeling of particular objects or textures.
      • May stroke or rub objects against certain body parts like hands and face.
    • F. Auditory stimming.
      • May use mouth, voice, and body to make particular sounds.
      • May use objects to make particular sounds.
    • G. Other types of stimming.
      • May be very drawn to specific smells, tastes, or other sensations.
      • May be very drawn to particular intense sensory experiences (e.g. spicy food).
      • May stim in ways which combine multiple different types of sensation.
  3. Other differences in sensory processing.
    • A. Different ways of processing multiple or combined sensations.
      • May have difficulty separating sensory experiences into individual parts.
      • May have difficulty combining individual parts into one sensory experience.
    • B. Difficulty with sensory modulation.
      • May have difficulty attending to relevant stimuli.
      • May have difficulty tuning out irrelevant stimuli.
      • May need a controlled environment with few sensory inputs at the same time.
    • C. Other specific differences or difficulties in processing.
      • May have trouble understanding or decoding speech (auditory processing disorder).
      • May have blending or merging of different senses (synaesthesia).

Cognitive

  1. Strength of focus and rigidity.
    • A. Intense focus and interests.
      • May spend the majority of time focused on few specific interests.
      • May concentrate on certain topics or activities for long periods of time.
      • May have strong emotional attachment to interest topics.
      • May have in-depth and expert knowledge about interest topics.
    • B. Preference for routine and sameness.
      • May have specific routines for days, weeks, or certain activities.
      • May be distressed and disoriented when routines or plans are disrupted.
      • May need to plan things carefully in advance.
      • May be more anxious than others when in new or unfamiliar situations.
  2. Difference in cognitive abilities.
    • A. Differences in executive function.
      • May have strengths or weaknesses in one or more types of memory (e.g. short-term, long-term).
      • May have difficult planning and executing a series of steps or actions.
      • May have difficulty identifying and solving problems.
      • May have difficulty concentrating on relevant information or input.
      • May have difficult starting, stopping, or changing activities.
      • May have poor impulse control.
      • May have poor sense of time.
    • B. Differences in experiencing and processing emotions.
      • May mistake physical sensations for emotions, and vice-versa.
      • May have difficulty identifying or naming emotions (alexithymia).
      • May have difficulty recognising or understanding others’ emotions.
      • May involuntarily experience others’ emotions.
    • C. Different spread of cognitive skills.
      • May have slower processing speed than others.
      • May have extreme strength in specific areas (e.g. nonverbal reasoning, language, music, mathematics).
      • May have face-blindness (prosopagnosia).
      • May have skills which vary more than others over time.
  3. Difference in thinking styles.
    • A. Different approach to details.
      • May have a strong tendency to notice details before, or instead of, overall ‘big picture’.
      • May have a strong tendency to notice overall ‘big picture’ before, or instead of, details.
      • May have difficulty creating examples from a general idea.
      • May have difficulty generalising from specific examples.
    • B. Different approach to patterns and systems.
      • May be skilled in recognising patterns.
      • May be skilled in identifying minor details and errors.
      • May be skilled in systemising subjects such as mathematics, science, puzzles, languages.
      • May enjoy organising and arranging information or objects.
    • C. Different ways of processing and making decisions.
      • May have a tendency for ‘black-and-white’ thinking and logical extremes.
      • May have a strong preference for particular ways of reasoning (e.g. logic, emotion).
      • May seem to think ‘outside the box’ or reach conclusions in different ways to others.

Variation

  1. Variation of traits.
    • A. Long-term variation.
      • May change throughout development from childhood to adulthood.
      • May change over years during adulthood.
    • B. Environment.
      • May be more sensitive to overload when already stressed, ill, or tired.
      • May use different social behaviour depending on social situation.
  2. Variation of presentation.
    • A. Conscious variation.
      • May deliberately mask traits in certain situations.
      • May use learned rules to replace instincts.
    • B. Unconscious variation.
      • May have learned masking behaviour from early childhood.
      • May have trauma or mental illness which affects presentation of traits.

Please use this list

I’d love for people to use this list, or descriptions based on it, in place of the triad of impairments and other flawed summaries. If you use it, please do credit this post – but really I care more about everyone having access to good descriptions of autism.

How to make your event autism-friendly, part 1: introduction

Posts in this series
[Part 1: Introduction]
Part 2: Sensory needs

Last week I went to a conference specifically aimed at autistic people. But considering that it was aimed at autistic people (and that many of the people who planned and ran it were autistic), I was surprised and disappointed by just how inaccessible the event was for autistic people.

This is going to be the first in a series of posts about how to make events accessible for autistic people. I feel like some of the things I’m going to write about will be obvious, and that might well be the case. But the fact is, I just went to an autism-specific event that ended up being very inaccessible to me and many other autistic people. So it can’t hurt to write about these things, in the hope that even one person learns something that makes things better for autistic people somewhere.

It’s really not very complicated to make an event comfortable and safe for autistic people, but people often seem to get their priorities wrong when they try. Sometimes they make certain very specific changes which are good for some autistic people but make no difference for others. Sometimes they focus on just one thing, on the assumption that it’s the only change they need to be perfectly accommodating. Sometimes they simply base their changes on inaccurate information and end up with completely the wrong idea.

The fact is, autistic people are all different. Different to non-autistic people, and certainly different from each other. If most traits in the overall population can be represented by a bell curve, then autistic people are more likely to inhabit the extreme ends of the curve – either end. If you randomly choose two autistic people, they are likely to be even more different from each other than two random neurotypical people.

Autism bell curve

So you can’t just adjust things in a certain direction and expect it to be perfect for all autistic people. If you make the lights dimmer, some autistic people will appreciate it, and others will find it too difficult to see anything. If you make the lights brighter, you have the same problem. The fact is, it’s simply not possible to individually accommodate every single possible combination of autistic experiences. So how do you deal with all these inconvenient variations? Provide choice, and lots of it.

This is the basic principle underlying pretty much all kinds of disability accommodations, and should be a key aim for any event which wants to be accessible to a wide range of people. It needs to be possible for people with all kinds of different needs and preferences to find a comfortable experience at your event, otherwise it’s not accessible.

In my upcoming posts in this series, I’m going to write about specific types of autistic traits, and give advice on how to accommodate them. I will, of course, be writing mostly from my own experience. But my own experience also includes knowing and talking to a lot of other autistic people, and I hope I will be able to provide an overview that will help an event be accessible to all kinds of autistic people.

What is autism?

I have gradually become less certain of the answer to this question. At this point, my short version is “I have no idea!”.

The most accurate answer is “autism is the label given to people who fit certain behavioural traits”. That’s so circular that it’s pretty much meaningless, but it’s also the only answer that really means anything.

Autism was originally defined based on behaviour, by two separate researchers who described a small number of individuals fitting certain traits. Since then, it’s continued to be defined based on behaviour, although the actual criteria have changed a lot over time.

When something is defined by appearance, it’s easy to automatically assume that there’s something ‘underneath’ that sums it all up. The most pleasing and logical explanation is that autism is caused by one thing, one difference in brain structure or growth or biochemistry – and that every autistic person has that same underlying thing. The trouble is, there’s actually no evidence for that. Lots of people have tried to find it, but no-one has succeeded. There are vague bits and pieces that autistic people tend to have certain brain differences, or that most autistic people share a certain cognitive trait, or that there’s a correlation between autism and some biochemical process. But if something can’t be shown to apply to every autistic person, then it can’t be considered the underlying ‘thing’.

Of course it’s still possible that there is one underlying thing, and we just haven’t been able to find it yet. But it’s also possible that there’s not, and that there are multiple different underlying things which can result in autistic traits. That seems plausible based on the fact that no-one’s been able to find something that’s consistent across all autistic people. But it also raises the question of why and how the same set of traits can arise from various completely different causes.

So, there may not be one underlying thing. And there has never been a perfectly consistent set of behavioural traits. And yet, we still act like autism is ‘something’ and that we all know what it means! This kind of uncertainty makes me feel like I shouldn’t be writing about autism at all. How can I write about something when I don’t know what it is? But then I remind myself that no-one else knows what it is either, and they’re all still writing about it.

I think it’s pretty likely that there are subtypes of autism. Although I definitely don’t think those subtypes correspond to the functioning levels or the autism/Asperger’s distinction that is so popular. If they are defined by anything, my guess is they’re defined by the types of cognitive processes a person has, which is probably influenced by whatever is the underlying cause of their particular autism. I have spoken to autistic people who I strongly relate to, and others who feel almost as different from me as NT people are, as well as a wide range in between. And those groups do not remotely correspond to whether a person is considered high or low functioning, whether they can speak, or what diagnosis they might have.

But – at least for the moment – it’s useful to have a name for this big overall group of people who tend to have a lot of things in common. Until we have a better idea of what the subtypes are (if there are any), or until we are accommodated so well that we don’t even need a label, ‘autism’ is handy. Better to have a vaguely defined label than none at all. I don’t know what we mind find out about autism in the future (especially once researchers stop wasting all their time and money on trying to cure it, and start learning actually interesting and useful things). But for now, as a scientist, all I have to go on is the best available evidence and hypotheses.

So, I guess I’ll just carry on writing about this thing which I don’t remotely understand, which I can’t possibly define, which no-one is able to make sense of, and which is somehow still a hugely important part of my life.

The gender talk

I haven’t explicitly talked about gender on this blog before. I haven’t exactly been avoiding the topic, it just never seemed relevant. But then as I avoided mentioning it for longer, it became a Big Deal, so I avoided it even more.

Terminology 101

Before I dive into talking about myself, I’ll start with explaining some words. I’m going to try to make this aimed at absolute beginners who have barely heard these words before.

I’ll start with possibly the most important distinction of all: sex vs. gender.

  • Sex is the physical characteristics of a person’s body. It’s defined based on a combination of traits (hormones, genitals, among others). Most of the time people can be neatly classed as either male or female – all those traits line up. But at least 1% of the population are intersex, which means they aren’t unambiguously male or female according to typical definitions.
  • Gender is a personal, internal sense of identity. Everyone experiences it differently – it is, by definition, subjective. But some of the things that may go into making up a person’s gender identity are:
    • The pronouns that feel accurate to them.
    • The words and labels that feel accurate to them.
    • A sense of belonging to a particular group.
    • The sex characteristics they feel comfortable with (whether or not those are the characteristics they currently have).
    • …among many others.

Sex is very rarely actually relevant. The only people that really need information about a person’s sex are their doctors (and even then, only sometimes!), and their sexual partners (likewise!). In any other situation, it is gender that is relevant. Gender tells you how a person should be referred to, how they should be treated, what groups and facilities they belong in, and all of that other important stuff. Gender is also way more complicated, and it’s where most people get confused – especially if they’re never thought or learned about it much before.

It all starts when you’re born, and the doctor picks you up and says “It’s a ____!”. At that point, you have officially been given your assigned-at-birth gender. That just means that someone assigned it to you when you were born. You didn’t pick it yourself (you were a baby!), someone else picked for you. Generally when people assign gender, they base it on observable sex characteristics (the doctor looks at the baby’s genitals to decide).

For the majority of people, that’s the whole story. They spend their life comfortably agreeing with the doctor’s assigned gender. Those people are called cisgender. That just means their actual gender identity is the same as the gender they were assigned at birth. Because babies (except for potentially a tiny number of exceptions) are always assigned as either ‘boys’ or ‘girls’, cisgender people are always binary. That means a gender identity that fits one of the two most common options – men and women.

For some people, they later realise that the doctor’s assigned-at-birth gender was wrong. Some people might discover that as very young kids, other people don’t notice until they are adults, or any range of ages. Those people are transgender. Their actual gender identity is different from what they were assigned at birth. When transgender people realise that their gender identity is not what they were originally told, they may do various things to help themselves feel comfortable. Things like:

  • Changing their name and the pronouns they go by.
  • Changing the groups and facilities they use.
  • Changing some of their physical sex characteristics, e.g. through surgery or hormone treatment.
  • …among many others.

Some transgender people are binary – men or women. Others are nonbinary – which just means, not simply men or women. People might identify as nonbinary if the various factors of their gender identity do not match up (for example, they might prefer to be called ‘he’, but prefer to have female sex characteristics), if they have preferences which don’t fit either option (for example, they might prefer to be called ‘they’ instead of he or she, or to have sex characteristics which aren’t considered either male or female), if their gender identity changes over time (for example, they sometimes feel like a man and sometimes like a woman). There are countless different ways to be nonbinary! And there are countless labels which describe all those different types of nonbinary. Things like: agender, androgyne, genderfluid, and many more. I couldn’t possibly describe all of the possibilities.

I’ve made a diagram to summarise how all those different words are connected with each other:

Summary

 

So what?

Hopefully my general explanations above have demonstrated why gender matters, and what it means. Some basic guidelines for being a good person when it comes to gender:

  • Listen to people’s own description of their gender (not anyone else’s) – and believe them. It doesn’t matter if you don’t understand (but try to understand).
  • Refer to people in the way they choose – their name, their pronouns, and other words like ‘man’/’woman’/etc. It doesn’t matter if it’s difficult to get used to, it’s basic courtesy.
  • Don’t ask questions you would be uncomfortable answering yourself. (Hint: don’t ask people about their genitals – that’s never OK).

I’d also like to add a disclaimer here. Everything in this post is controversial and debatable. Some people will disagree with me about my definitions or my categories, some people will be upset that I’ve missed things or think I’ve included things that aren’t necessary, some people will feel their identity can’t be described using my framework. All of that is important, and you should always, always prioritise an individual’s feelings and preferences over some general definition you have. I’ve tried to be as neutral as possible, but I’ve also been necessarily brief and I couldn’t possibly explain all of the nuances of this topic in one post. As long as you follow the ‘good person’ rules above, you should be fine. Never stop learning!

About me

I am agender. That means I don’t have a gender identity – I’m not a man, I’m not a woman, I’m not both, or in-between, or a mixture – I’m neither. Agender is a type of nonbinary identity. Nonbinary, in turn, is a type of transgender identity.

I’ve handily highlighted myself on the diagram from above:

Me

So, for readers of this blog, the relevant information about me is simple:

  • Don’t call me a man or a woman, or other types of gendered words. You can call me a person!
  • Don’t call me he or she. Use singular ‘they’, in the same way you’d use it for an unknown person. For example: “They wrote a post for their blog and edited it themself”.

I hope this has helped you learn something, and maybe cleared up some misconceptions!

 

Autisticality

The word ‘autisticality’ was actually coined by my friend. Although I’m sure other people have said it before too; it’s quite a natural word to create, really. It could just as easily be “autisticness”, “autistitude”, or even – “autism”. Oh, wait.

In theory, autisticality means just the same thing as autism, right? “That kid’s autism affects their social skills”, “that kid’s autisticality affects their social skills”. And yet, it’s different somehow.

Maybe it will make more sense with some other examples. How about a broken leg:

  • My broken leg means I can’t walk.
  • My leg-broken-ness means I can’t walk.

They have the same meaning in the simplest way. But “broken leg” is very concrete and specific. Whereas “leg-broken-ness” is abstract, like it’s one-step removed from just “a broken leg”. It makes it sound like “leg-broken-ness” is some kind of all-encompassing permanent aspect of the person. That’s why the second option doesn’t make much sense – it’s actually just one small and temporary part of them. In this case, it has one specific effect: making them unable to walk.

Autism/autisticality works the same way, but in reverse:

  • My autism means I am prone to anxiety.
  • My autisticality means I am prone to anxiety.

The first one sounds like “my broken leg means I can’t walk”. It feels like saying “my specific, temporary, and abnormal medical condition gets in the way of me functioning like I usually do”. The second one feels like saying “this overall aspect of me defines the way I am as a person”.

There is a person who can walk, temporarily disguised by the broken leg. But there isn’t a non-anxious person, disguised by the autism.

There is just a person, and autisticality.

“Everyone feels that way”

This is one of those seemingly small things that really irritates me. It’s such a natural response for a lot of people when someone talks about something difficult, but it absolutely always makes me feel worse.

It’s never true. I mean yeah, a lot of things are pretty common among a lot of people. But nothing is completely universal to everyone. So it’s always an oversimplification and an exaggeration.

It probably means you don’t understand. I don’t think I’ve ever listened to someone talk about an experience and said (or thought), “everyone feels that way”. If I ever do think that, I always assume that I’ve misunderstood, and that generally turns out to be true. If something seems like it’s universal, that’s probably because you haven’t got all the detail. Even a seemingly ‘common’ thought, like “I’m not very attractive”, is always way more complicated than it seems. At its simplest, it might be true that a lot of people think things along those lines. But when you get down to what’s underneath that thought and what it really means, it’s always unique to any person. So dismissing it as “everyone feels that way”, is really just saying “I don’t care enough to understand the full extent of what you are talking about”.

It doesn’t make me feel any better. This is probably something that varies between individuals. Maybe for some people, knowing a problem is common actually does make them feel better. But that doesn’t work for me. If I have a problem, I want solutions or nothing. And telling me that other people have the same problem does not count as a solution.

It makes me feel weak and broken. This is really the big one. Telling me that “everyone feels that way” has the subtext of “and everyone else handles it better than you”. That might not be the intention, but it’s the way my brain interprets it as the most logical meaning. If I’m talking about something fairly everyday that causes me crippling anxiety, and you tell me that everyone gets anxious about it – the implication is that everyone else gets anxious and does it anyway. And I don’t want to, or I can’t, and that means that I’m weaker than everyone else.

It’s a way of one-upping other people’s problems. It’s great to offer advice based on a similar experience. But when that turns into “my problems are worse than yours”, it gets unhelpful and annoying really fast.

Maybe this is all just one of those mysterious autistic-NT communication barriers. It’s hard for me to imagine being the type of person that finds this helpful, but maybe most NT people do. Otherwise, they wouldn’t say it all the time, right?

Neurodiversity, language, and the social model

Neuro-what?

neurodiversity the diversity of human brains and minds.

The neurodiversity movement is an approach that recognises neurodiversity as natural and positive, similar to natural diversity in gender, sexuality, race, and more. The approach also states that the idea of one ‘natural’ or ‘right’ form of neurology is socially constructed and inaccurate.

Note: people who support the neurodiversity approach (like me!) still use the word ‘neurotypical’. That’s because there is a societal idea of a normal or natural neurology. Yes, in an ideal world, there wouldn’t be. But most people see it that way, so neurotypical is an important word to describe someone whose neurology is considered normal in current society.

Models of disability

A disability is something which limits or reduces a person’s abilities in a certain area. An impairment is something which is different about a person’s body or brain that means it cannot function so effectively. There are several different models used to define and describe the relationship between disability and impairment.

You are probably most familiar with the medical model of disability. The medical model states that a person is disabled by their impairment (for example, a paralysed leg). The way to fix that disability is to ‘fix’ the impairment. The disability is seen as inherently negative, and should be eradicated however possible.

The social model states that a person is disabled by society. The person might have an impairment (e.g., a paralysed leg). But that impairment only becomes a disability when society fails to accommodate them (e.g., not having a wheelchair-accessible entrance). An example of the social model in action is short- or long-sightedness. These impairments are not considered disabling, because glasses are so readily available and accepted.

The social model states that the way to improve a disability is to improve the way society treats a person’s impairment. Note that it doesn’t say people’s impairments must not be cured, simply that cure is not the only option and should not be forced or expected.

Neurodiversity and the social model

The neurodiversity movement is heavily based in the social model. Impairments in human brains (for example, epilepsy, or depression) are not inherently flaws. They become a disability when society does not accommodate them, or discriminates against people for them.

Neurodiversity also adds another complicating factor, though. The social model of disability makes the distinction between impairment and disability, but the neurodiversity approach also includes things which aren’t necessarily impairments at all.

Autism is an example of that. Autism is pervasive and incorporates a person’s whole existence. It consists of a wide variety of different traits, some of which are impairments and some of which aren’t. For example, I consider my predisposition to anxiety to be an impairment. It’s a fundamental problem in the way my brain works, that makes it harder for me to function effectively.

But I don’t consider my atypical communication to be an impairment. That’s just a difference, which is pathologised because autistic people are a minority. If autistic people were the majority, then neurotypicals would be diagnosed with “inability to use concrete language” and “excessive reliance on other people for happiness”.

The key feature of neurodiversity and of the social  model is that the impairment or difference is not the problem. People are diverse in all kinds of ways, and treating those differences as inherent flaws is just a result of society’s harmful views. The neurodiversity approach doesn’t say that impairments shouldn’t be cured, or that people aren’t allowed to want treatment for them. If I could take a magical cure that would put my anxiety on a level with neurotypical people, I would do it in an instant.

The point is that being cured or treated should be our choice , and that if we don’t want to or can’t be treated then society should accommodate us. I can’t cure my anxiety, and so I need other people to help me deal with it. I wouldn’t want to cure my communication differences, and so neurotypical people will just have to meet me halfway when we’re trying to understand each other.

Language

The neurodiversity approach has important implications when it comes to language. A lot of people (typically neurotypical people who are helping or caring for autistic people) support ‘person-first language’ to describe autism. This means referring to someone as a person before stating their disability, a “person with autism”.

You might have noticed that I do not use person-first language. What I use is called ‘identity-first language’. This means referring to autism as an aspect of someone’s identity, an “autistic person”.

People who support person-first language say that no-one should be defined by their disability, that they are a person before they are anything else. It sounds like a noble aim, and they generally have good intentions. The trouble is, the very idea that person-first language is necessary comes as a result of the medical model of disability. It’s bad to define a person by their disability if you think a disability is inherently a bad thing.

Identity-first language accepts that neurological differences and impairments are not inherently positive or negative, they are just aspects of a person’s identity. You wouldn’t dream of saying “a person with homosexuality”, would you? Because that implies that being gay is negative, as well as something that could even theoretically be separated from the person.

The neurodiversity approach says that being autistic is comporable to being gay. It’s an identity, and a natural and value-neutral aspect of human variation. And autistic people should be accepted and accommodated in the same way as gay people. If there are problems associated with being autistic (or being gay), like finding it difficult to communicate (or finding it difficult to get married) – those problems should be accommodated by society.

When you use person-first language, you are saying “Being autistic is entirely and inherently negative”, and “Being autistic makes you less of a person”, and “I have to be reminded that autistic people are human”. Please stop saying those things to us.

Alternative autism criteria

I’ve written a much-improved updated version of this. Click here to see it!

Since my diagnosis I’ve been irritated with all the information about autism using the ‘triad of impairments’. If you haven’t heard of it (where have you been?!), the triad is “social communication”, “social interaction”, and “[social] imagination”.

There are so many reasons why the triad of impairments is flawed. It doesn’t reflect any actual diagnostic criteria, so there’s no need for it. The distinctions between the three sections are vague and poorly-defined, so that pretty much any trait could fit into any one of them. Then there’s the fact that it actually misses out many of the most significant traits, because it only focuses on external social elements (because… *sigh*, it was written by NT people who just described the traits most apparent to them).

So, I decided to write my own. This isn’t a set of diagnostic criteria – I’m not a professional and I don’t know how to diagnose autism. It’s simply an overview of common traits with examples, divided into (what I think are) logical categories. If I could have my way, every leaflet about “what is autism” would contain this – rather than the useless and nonsensical triad of impairments.

Social

  • Differences in body language and nonverbal communication. E.g.:
    • Reduced eye contact.
    • Reduced variation in vocal tone.
    • Unusually loud or quiet speech.
    • Different or reduced use of gestures.
    • Reduced use of facial expressions.
  • Differences in verbal communication. E.g.:
    • Preference for speaking in ‘paragraphs’ over back-and-forth interaction.
    • Difficulty using words in some situations, such as under stress.
    • Use of echolalia and/or scripts in communication.
    • Preference for text-based communication.
  • Differences in interaction and social relationships. E.g.:
    • Reduced desire for social relationships.
    • Preference for one-to-one or small group interactions.
    • Preference for functional and pragmatic interactions over social ‘chit-chat’.
    • Difficulty forming or maintaining social relationships.

Sensory

  • Hypersensitivity to one or more senses or specific sensations. (e.g. bright light, specific textures, strong smells). Demonstrated by pain, illness, discomfort, or avoidance of certain sensations.
  • Hyposensitivity to one or more senses or specific sensations. (e.g. pain, temperature, taste). Demonstrated by failure to notice, react to, or distinguish certain sensations.
  • Sensory seeking. Demonstrated by stimming (self-stimulation) behaviour in one or more ways. E.g:
    • Fascination and staring at lights or moving objects.
    • Pressure from weighted objects or body weight.
    • Vestibular sensations such as swinging, rocking, and spinning.
    • Moving limbs and/or objects such as hand flapping, fiddling with toys, hair twirling.
    • Desire for specific smells or tastes.

Rigidity

  • Intense and/or specific interests. E.g.:
    • Spending the majority of time focused on few interests
    • Interest in a very narrow, unusual or specific subject area.
    • Desire to learn all facts and information about interests.
    • In-depth and expert knowledge of interest area.
    • Interest primarily enjoyed alone, without consideration of social implications.
  • Preference for routine and sameness. E.g.:
    • Specific routines for days, weeks, or certain activities.
    • Distress and disorientation when routines are disrupted.
    • Preference for doing things the same way as always.
    • Preference for planning things carefully in advance.
    • Anxiety in new or unfamiliar situations.

Cognition

  • Difficulty with executive function. E.g.:
    • Poor short-term/working memory.
    • Difficulty planning and executing a series of actions.
    • Difficulty identifying and solving problems.
    • Difficulty concentrating on relevant information.
    • Difficulty starting, stopping, or changing activities.
  • Differences in understanding or processing emotions. E.g.:
    • Mistaking physical sensations for emotions, or vice-versa.
    • Difficulty identifying or naming own emotions.
    • Difficulty recognising or understanding other’s emotions.
    • Preference for using logic over emotions in decision-making.
    • Do not externally express emotions.
  • Detail-focused thinking style. E.g.:
    • Tendency to notice specific details before, or instead of, overall ‘big picture’.
    • Difficulty generalising from specific examples.
    • Difficulty noticing implied messages.
    • Skilled in identifying minor errors such as typos.
  • Love of patterns and systems. E.g.:
    • Talent for systematising subjects such as music, mathematics, science, puzzles, languages.
    • Enjoyment from organising and arranging information or objects.
    • Skilled in recognising patterns.
    • Preference for learning from systems before examples.