What is autism?
Autism is... a lifelong neurodevelopmental difference. In more basic terms, it is a difference in the way our brains are wired. Think of it as a different way of experiencing the world and interacting with it. This includes our sensory experience and our ways of socialising, communicating, understanding and processing information. Autistic brains have always been part of human diversity and are a normal variation of the human neurotype.
Autism is not... a learning disability, an intellectual disability, a mental health disorder, brain damage, a disease, a disorder, or something that needs to be cured or prevented and it’s not something that we grow out of. Autistic children will become adults and will grow old with the same, incredible brains that we were born with. Each and every one of us deserve the same respect, understanding and acceptance as any other human being.
“Although people with autism look like other people physically, we are in fact very different . . . We are more like travelers from the distant, distant past. And if, by our being here, we could help the people of the world remember what truly matters for the Earth, that might give us quiet pleasure.”
— Naoki Higashida, The Reason I Jump
Anyone can be autistic.
Anyone of any gender, race, ethnicity, class, culture, religion, nationality...
And just like in the non-autistic population, we are all unique. We share common traits with each other of course, but like all humans, we also have unique strengths, weaknesses, skills, talents, difficulties, personalities and anything else that makes humans unique to each other. And our intelligence and IQ cover the whole range of the spectrum too.
Some of us are gifted or twice exceptional and a rare few are geniuses. Yes, I said a rare few! - we are not Rain Man or Rain Woman. And just like non-autistic people, we can also have additional challenges such as intellectual disabilities, specific learning difficulties, other developmental conditions, additional neurodivergences, mental or physical health challenges or a combination of all of these.
We certainly find neurotypical society challenging - that much is for sure. But for the rest of our skill sets, they are uniquely uneven in each autistic individual. Some of us are highly creative and imaginative, whilst some are very structured, scientific or mathematical. We may have very high support needs in some areas of life, and very few in others – or anything in between.
For example, someone could be a professor of astronomy, or a gourmet chef, whilst at the same time, be unable to tie shoelaces, or even dress themselves without assistance. Another may be perfectly capable of getting a university degree, yet cannot attend lectures due to the unbearable sensory aspects, or due to processing differences. We might be able to successfully run our own business, but need support in order to manage our home lives or keep track of our finances.
We might be shy or we might be outgoing. Some of us need plenty of social contact, and some, very little. We may enjoy social contact in different ways to that expected by non-autistic people. Or we might not! One autistic person can be so empathetic that it is actually physically painful for them, while others need emotions and feelings to be very clearly spelled out.
You can't tell just by looking at us
Autism doesn't have a 'look' or specific facial or body features, and you cannot tell just by looking at us. We look just the same as, or just as different to, anyone else in the world. In fact, one of the worst things people often say to us is that we don’t look autistic.
What people who say this actually mean, is that we are doing an excellent job of masking our natural autisticness (not a good thing). Much more about this further on. Saying we don't 'look autistic' also completely invalidates our lived experience and our difference. Plus, there is nothing wrong with being different to another person, so therefore nothing to be ashamed of about having an autistic brain. On the contrary - it comes with many advantages.
Interestingly though, autistic people often have a kind of 'autistic radar' (autidar) enabling us to spot our own neurokin easily - whether that is consciously or unconsciously. It's also common for us to partner up with other neurodivergent people, even if we are unaware that we are doing it.
Certain other neurodivergent conditions such as ADHD and developmental co-ordination disorder (dyspraxia) often walk hand in hand with autism, and autism frequently runs in families - even if the relatives aren't aware of their own neurodivergence! It's also common for a parent to seek an assessment for themselves following a diagnosis in one of their children.
Some autistic people may seem 'different'. Act differently to how society expects human beings to act. Some of us have an unusual tone of voice, or a seemingly aloof manner, for example. This frequently causes us to be falsely accused of being arrogant. We may perhaps talk too much or very little, or be non-speaking. Therefore preferring, or needing, to use other methods of communication such as assistive devices, for example. This is known as augmentative and assistive communication (AAC).
One last thing to be aware of is that, many autistic adults, particularly women, are able to effectively mask their autistic traits and blend in with the 'neuronorm' so well, that even professionals in the field of autism are unable to spot us. This is also known as camouflaging, but it is not a natural or healthy way to live. It is more likely to contribute to mental illness and burnout and should not be encouraged just for the benefit of non-autistic society.
The autism spectrum
Autism is also called autistic spectrum disorder (ASD) or autistic spectrum condition (ASC). This is because people who diagnose autism recognise that we all have differing profiles of traits, strengths and challenges.
Known as the ‘autism spectrum’ it is why we sometimes describe ourselves as being ‘on the spectrum’.
But it's not a linear spectrum, going from black to white, or ‘mild’ to ‘severe’. It is more like a beautiful globe full of every colour imaginable. Some are brighter, some dimmer, some darker, lighter or a different hue. Some may be just tiny flickers of pastel colour, whilst others are full-on, in-your-face flourescent. Each representing our strengths and challenges.
Here's another analogy to demonstrate the unique skill variety of autistic brains. I like ice cream so let's use that. We are all ice cream. But we all come in different flavours and different colours. And we all have toppings - sprinkles, chocolate flakes, roasted nuts and so on. Some of us come in little bowls and some of us prefer being loud crunchy cornets. And some of us have more sprinkles but less roasted nuts, whilst others have a lot of roasted nuts and cream, but almost no sprinkles. This variety makes us unique but interesting for different reasons. Personally, I definitely have lots of roasted nuts!
“Even for parents of children who are not on the spectrum, there is no such thing as a normal child.”
— Violet Stevens
What does it feel like to be autistic?
The answers to this question are sprinkled throughout this website. (I'm sorry about the reference to sprinkles there - I'm still thinking of ice cream...) I also hope to include much in the way of autistic experiences in a future section, which will be called 'Autistic Experiences' and I hope this will grow over time.
Late diagnosed adults are in a unique position to answer this question, because they will have spent their entire lives up to that point, trying to identify with being someone they are not.
Most of us will agree that, deep down, we have always known that we were somehow different. Unless we were fortunate enough to have grown up in an exceptionally open-minded and accepting community, we would have been acutely aware of this difference, probably experiencing it as confusing, isolating, alienating, and often painful.
Some of us describe the pre-diagnosis years as feeling like an alien from a different planet. Others say it was like looking through a clear barrier, through which they could see the neurotypical world, but not touch or interact with it in any way.
And it is important to know that, despite our individual challenges and the biases of the world around us, many of us have a huge autistic pride and gratitude for our differences, and would never choose to be without them. Difference and diversity are necessary for all life on earth to thrive and survive.
I do not wish to distract from the fact that, being autistic can be (and often is) extremely disabling, and this should never be downplayed or trivialised. But much of our actual struggle is purely because we are trying to conform to the expectations of the neuromajority.
When we are not being our authentic selves, life becomes a huge and painful struggle. But when allowed to be our true selves, with our unique gifts, talents, abilities and needs supported, accommodated and appreciated - then we can achieve our full potential, enjoy life, have fulfilling relationships and contribute to the world in meaningful ways.
By Di Verse
It feels like we were the only ones not to be given the
‘Neurotypical Society Rule Book and Instruction Manual’