What is Autism?
What does it mean to be autistic?
Ways of Thinking
Relationships with other people
Repetitive Behaviour or Thought
So… am I autistic?
Take the Test
What is Autism?
Autism is a neurological variant of the human mind. To put that in meaningful terms, being autistic means that you take in and process information differently to the majority of other human beings, and that affects the way you interact with the world and other people.
The scientific research into autism and who is and is not autistic is still in its beginning stages. All we’ve really figured out so far is that autism is rooted in the brain. It looks like there may be a genetic component as well – which means that if there’s an autistic person in your family, other family members, including you, may also be autistic.
For a long time, the only people who were noticed and picked up as autistic were people who have significant disabilities which prevented them from participating in ordinary society – much of the way we understand autistic people has been through observing and trying to help that particular sub-group of our people. This has led to a widespread conception that autism is a disordered version of non-autistic (“neurotypical”) experiences of the world and that this is something bad and that our society has to fix.
In reality, there are a large number of autistic people who have done enough by themselves to educate themselves, to try to fit in, and to appear neurotypical that neither they nor the people around them know that they are autistic.
We have no real idea just how many autistic people there are. However, as it has become apparent in the last thirty years that there is considerably more to autism than just those of us who have significant disabilities, diagnosis rates have started to climb. The mainstream media has been describing this as an “epidemic” that has some sort of cause, which could be anything from chemicals in our food to vaccines (just to be clear, it’s not vaccines). What seems more likely to those of us in the autistic community and many of the people who work with us, however, is that, as with the sudden rise in the number of gay people in Western societies, the simple truth is that we have always been there, we just had no idea who and what we are. Once many of us began to understand that there were other people out there who think, talk and act like us, a lot of things made sense.
What does it mean to be autistic?
We want to be really clear that being autistic does not inherently mean being disabled. Many people may identify with what is written on this page but decide that they can’t be autistic because autistic people have behavioural problems, have to go to special schools, are unemployed, or can’t maintain friendships or relationships with other people. None of this is true. Some autistic people have behavioural problems, have to go to special schools and require help and support to achieve things that many of us consider to be intuitive human functions, but this is simply not the case for everyone. As our society begins to realise that being autistic doesn’t mean these things, more celebrities have been able to come out as autistic in a range of fields, including Hollywood actor and composer Anthony Hopkins, film director Tim Burton, screenwriter Dan Harmon, Hole lead singer Courtney Love, and Britain’s Got Talent winner Susan Boyle. Being autistic does not mean that you cannot achieve (or that you will.)
Then what does it mean to be autistic?
Ways of Thinking
Being autistic means that you are particularly interested in systems of information. How things work, they fit together, and what they would look like if you did things differently. This has led to one conception of autistic people as very intelligent and cerebral, because we spend a lot of time just thinking or trying to answer questions that we have about how things work or fit together. However, it should be pointed out that this is something that autistic people who have significant cognitive impairments can also be observed doing, whether that’s through asking a lot of seemingly similar questions, taking objects apart, or just watching the same videos over and over again. Autistic people can get very, very into particular areas or fields, about which we can appear to know almost everything, which have come to be known as “obsessions” or “special interests”. It can also feel very pleasant and calming to an autistic person to repeatedly go over information that they have already acquired.
Being autistic also means for most autistic people that we are more oriented to systems and objects than other people. Taking a particular interest in systems naturally follows that autistic people are very good at problem-solving. Often autistic people are described in childhood as being extremely curious and difficult to keep safe because we diligently worked out how to solve minor problems such as baby gates, locked doors, child safety catches and fences, and as adults this means that we are over-represented in fields which are particularly focused on problem-solving and building or maintaining systems, such as engineering, programming, or project management. However autistic people can and do work in most jobs.
This does not mean that autistic people are not interested in other people, having friends or being social (although some aren’t) – it simply means that autistic people typically will spend more time thinking about “stuff” than “people”, and the things we enjoy are more likely to be private study, solitary hobbies, or jobs that involve working alone. Autistic people are often described as being “self-contained” – we can spend long periods of time alone or in our own heads and do not need ongoing external validation or attention from other people the way that many neurotypical people do. This can be frustrating to neurotypical people who do not understand why we don’t act towards them the way they expect us to.
Relationships with other people
Because of this orientation towards objects rather than people, being autistic affects our relationships with each other and neurotypical people. It is well known that empathy, or understanding and identifying with the feelings of other people as different to your own, is not something that comes naturally to autistic people the way it does to neurotypical people. Actually, what we talk about as “empathy” is actually a subset of empathy known as “cognitive empathy”. “Affective empathy”, or recognising the emotions of others and responding to them, is actually something autistic people are usually quite good at. The difference between the two is the difference between seeing someone is sad and not wanting them to be be sad (affective empathy), and understanding why someone is sad and what they need to feel better (cognitive empathy). This may seem counter-intuitive, but affective empathy, which leads to a desire to alleviate pain and suffering in others, is the reason that so many autistic children will exclaim “that’s not fair” and argue with adults about rules they consider unjust, and so many autistic adults will find themselves as the forefront of campaigns for social justice.
Nonetheless, a preference for concrete systems that can be analysed and mentally clambered about in, and a initial lower level of cognitive empathy than neurotypical children, means that autistic people often struggle to pick up on social cues and unspoken rules about how to interact socially with other people or behave in social situations. These “soft” skills are things that we largely expect children to just acquire through existing in social spaces, but this is not how autistic people learn. We need these things to be explicitly explained, and they rarely are. Many autistic people managed to pick up what they needed to know through active observation and determined effort, but none of us found this process easy, and many other autistic people have never realised that was a thing they needed to do in order to get along with other people. Autistic people therefore have a reputation for being rude, oblivious to social norms, or people who only talk about ourselves and things that we are interested in.
Cognitive empathy can be taught, but because so few autistic adults were taught it, this affects our ability to form relationships. Relationships with other people are formed on the basis of mutual interests and shared experiences, and because autistic people are different from neurotypical people and have a much smaller population, finding people we share those interests and experiences with and enjoy the company of automatically becomes much harder. As so many of us have also never fully learned the social skills we were expected to just pick up, even when we find the right people it can be difficult to build solid meaningful relationships with them, because we’re not quite sure what to do. Romantic and sexual relationships, which are even more private and require an even greater degree of vulnerability and trust, can seem even harder.
A significant number of autistic people, because of this orientation to objects over people and a lack of sensory sensitivity (covered below), have no desire for a romantic relationship and even where they do want someone to share their lives and companisonship with, may not be interested in physical contact or sex. As many as a third of all autistic people may be asexual. As it is often the case that autistic people are either unaware of or actively reject social contructions of gender, many autistic people are much more likely to be gender non-conforming in their appearance and behaviour, or to have a non-heteronormative sexuality.
You can see how all of these factors can make it difficult in various ways for autistic people to understand and interact with each other and neurotypical people. Without realising that people use language and non-verbal cues to convey subtle or hidden intentions or to subvert the plain meaning of their statements to mean something else entirely, autistic people can struggle to understand jokes, sarcasm, metaphor, reluctance, polite disinterest, or frustration. This can be maddening to people who feel misunderstood or like they are being ignored. This, in turn, can lead people to dislike or wish to disassociate from an autistic person who may be totally unaware that they are coming across in an alienating way.
This is not to say that autistic people have nothing to offer other people, whatever our social skills. Autistic people are typically honest, forthright about what we think, dedicated to causes greater than ourselves, thorough, intensely loyal, and aggressive in our defence of the things we believe in and the people we love. You know where you stand with us. You can count on us – to let you down would be to transgress the systems that we believe in. Many people enjoy our authenticity and our devotion to the things we care about.
Autistic people therefore thrive best in environments where social expectations and manners of communicating are made explicit; and understanding, forgiveness and acceptance are actively promoted values. Many autistic people who have graduated, maintained a career, found friends, a partner and started families have done so because we have managed to seek out or found ourselves groups or places where people appreciated our positive qualities and either compensated for the things we cannot do or were not taught, or communicated clearly and directly about what they needed us to do. Some of us may require active social support or intervention but many of us only need kind, decent human beings to find our way.
Being autistic also means that you literally experience things differently. For reasons that are currently being researched but for which we currently have no complete answers, autistic people have different sensory systems to neurotypical people. It’s like we mostly have the same wires that form our neurological connections, but they’ve been laid out to a different set of configurations. This means that we can be highly sensitive to some sensory inputs, and insensitive to others. The most common ways that we can see these manifest is autistic people being overwhelmed by strong lighting, loud noises, or crowds. Increased sensitivity need not be negative: some autistic people have perfect pitch, or an enhanced sense of smell, for example.
Many autistic people also have reduced sensitivity. This can make some seem totally disinterested in things that other people find fun or enjoyable, which may seem incomprehensible to them. This lack of interest can help some autistic people to concentrate harder and for longer on things that are important to them without distraction, such as being able to work alone in a room with other people speaking to each other. In many others, their reduced sensivity causes them to seek out louder, brighter, more intense inputs – imagine if you are trying to pick up an object wearing gloves, so you hold it tighter than you would normally do if you weren’t wearing gloves. This is often why many autistic people who have below average social skills can be seen putting objects in their mouths, tapping things, or even hurting themselves (such as head-banging) – they’re trying to get that input while effectively wearing invisible gloves.
For some autistic people, these sensory experiences are so overwhelming they are painful, and they are restricted in the places they can go and the things they can do. There are autistic-specific experiences known as the “meltdown” and the “shutdown” in which the body, overwhelmed by sensory stimulation, can hit the big red button – a meltdown feels like all your synapses activating at once, and a shutdown is where they all stop responding. Autistic people can experience one, the other, both or neither and may have different responses to different situations. However, having either in a public place can be intensely embarrassing, which can also be a factor for some autistic people who feel they are particularly prone to these experiences.
But for many of us, these sensory sensitivities manifest in socially acceptable ways such as being unable to wear certain types of materials because they feel uncomfortable (such as wool), avoiding certain foods or drinks because they taste particularly strong or unpleasant (alcohol is very common), or refusing to go some places at certain times because they’re very crowded (something many neurotypical people can identify with).
Because of this different sensory wiring, autistic people are much more likely than neurotypical people to have physical conditions such as gastric problems (such as a weak stomach, IBS, acid reflux, food allergies or intolerances), neurological conditions (such as migraines, headaches or epilepsy), difficulty sleeping, or motor conditions (like dyspraxia or speech impediments).
Repetitive Behaviour or Thought
People generally are averse to change. “If it ain’t broke, don’t fix it” is a common English idiom. Autistic people are particular averse to change. Why this is is debatable, although it may be the flipside of having a systematic style of thought: changes to that system threaten the entire model. What this means practically is autistic people are usually creatures of routine. We will sit in the same chair, eat the same foods, visit the same places at the same time. Autistic people have different levels of addiction to routine: some may insist on everything and everyone around them remaining exactly the same, forever; others have more flexibility in the face of a change but will adhere to the new routine with as much vigor as the old one. Others may have a routine of changing routines regularly. Every autistic person is different in this regard, but will generally have a respect and preference for routine that goes beyond that of neurotypical people.
Because autistic people have a preferential option for the routine and same old, same old, we will often engage in repetitive behaviours such as reading the same books, watching the same videos, travelling v ia the same routines, washing in a particular and prescribed manner. This can slow us down relative to neurotypical people and it may takes us longer to do ordinary tasks because we are concentrating on completing it in the “right” way. This can also ultimately result in some autistic people having or developing Obsessive Compulsive Disorder, which can be distressing. Generally though, autistic people are as harmlessly predictable in our ways as many neurotypical people.
If we have built a systematic way of thinking about something, and then something occurs which does not fit that system easily, it may take us some time to adjust to it. Some autistic people may struggle to adjust at all and this is where the stereotype of people becoming extremely upset because other people have acted unexpectedly or tried to change a social norm comes from. Most autistic people do simply rework the system they have developed, although this process typically takes longer than neurotypical people. Many autistic people can therefore take some time to answer a question or react to a situation while this extra processing time is happening. This often results in autistic people adjusting to a new situation or new people, or just processing away, being perceived as very quiet or shy. Once the thinking has been done, however, autistic people are usually able to make associative links between information or develop more complex systems of understanding, that neurotypical people might have missed or not considered.
However, autistic people can get stuck in repetitive ways of thinking that can require some effort to get out of. Minor things may seem overly important to us. In that case, may we need an external input to move us out of the thought loop that we have gotten stuck in. An autistic person might be in a classroom with a teacher, for example, and a teaching assistant might be introduced without explanation. The autistic person is unclear about the authority of that person: are they a teacher, or a peer? There is no context or category for the existence of this teaching assistant and their relationship to the autistic person. This is discomforting and upsetting. On raising this issue, however, the frame of reference is simply altered – the teaching assistant is their own category, neither a teacher nor a peer. Everything is now fine.
We haven’t previously given specific scenarios in this overview before but this is an important and massively underappreciated point about autistic people: our ability to accept new categories of information simply by acknowledging and understanding the range of categories we previously thought existed. We can and do grow as people. It is often the case that autistic people are characterised as unable to deal with or cope with any environmental or structural changes at all, but again, this is largely because of an approach to it that is different from neurotypical people.
Every marginalised and minority group within any society experience “minority stress”. Autistic people, dealing with all of the differences between our lived experience and a majority neurotypical society which characterises us as ill, disordered or a burden, and which raises, educates and relates to us as if we are neurotypical, are especially prone to anxiety and depression, loneliness, feelings of isolation and low self-esteem. Many also have to deal with the pain and discomfort of associated medical conditions, which may also be undiagnosed or untreated for long periods.
Many autistic people who have jobs, families and friends nonetheless feel like there is something “wrong”, that they are somehow different. They feel like there is something vaguely missing but can’t identify what.
The prescription for the widespread feelings of “wrongness” or active misery within autistic people is, unexpectedly, the same as those for neurotypical people – basic physical and financial security, a strong sense of identity and communal belonging, meaningful relationships with other people on the basis of mutual interests and shared experiences, and a sense of purpose and direction in one’s life, which is oriented around things that bring one joy and satisfaction.
So… am I autistic?
No trait, characteristic or experience that was described above is exclusive to the autistic community – we are, after all, human. But taken as a whole, it is clear that an autistic life is experienced and lived differently to a neurotypical one. If you found that you resonated strongly with large parts of what we have written above, you may wish to consider whether you might not benefit from spending more time with autistic people, or even whether you might be one of us.
Until science has progressed sufficiently to provide us with a foolproof way of determining who and who is not autistic (some way off as they still haven’t agreed on what autism is yet), generally people realise they are autistic through reading about autistic traits and realising what they are reading is describing them. The next expected step is to go to a psychologist or suitable medical professional and be formally assessed for autism. This is, however, not simple. Even in countries where healthcare is free or low-cost, provision for autistic adults and even a lot of autistic children is patchy and sparse. You may find the professional you go to does not share the positive, its-not-a-childhood-illness understanding of autism that we have presented to you here.
Once you do have your assessment though, generally a psychologist will spend a couple of hours asking you about your background, why you think you’re autistic, looking for signs of autistic traits in what you describe, in the way you interact with them and possibly administering one or two assessments. Because autism is more easily detectable in childhood, you will nearly always be asked for a relative or person who knew you as a child to fill out a questionnaire that they can take into account.
This is all a long process, and you may not be interested in a formal diagnosis, but would like a more objective way of determining whether you are autistic than just you think you might be. Standardised testing has been developed and although we have our qualms with a paradigm of “diagnosing” people with autism (just like we used to “diagnose” people with being gay), it’s nonetheless the most effective method we have to offer you right now to provide an objective assessment without meeting you. Below is the Adult Asperger Assessment, developed by Professor Simon Baron Cohen and administered to thousands of people. Please take it at speed, with no more than a second or two spent on each question.
Be warned, there are some cultural assumptions built into this test that mean that some people will take it and “fail”. This does not mean you are not autistic. This is just the best we can offer right now as we build the Empire.