Like depression and other mental health conditions, and like homosexuality until very recently, autism is vastly misunderstood, feared, and seen as a disease, as scary, as wonky or as something to be cured or avoided.
It is none of those things. It is about how our brains are wired through our genetic inheritance.
Try and forget the word “disorder” if you can.
Through my parents’ genes I inherited a brain that puts me on the autistic spectrum. It is so not a disease and not scary and not wonky that none of us knew for 44 years.
The main problem I have had in life is a feeling of being a little different and not knowing why. Some things have been a struggle and I could see they weren’t a struggle for others. These struggles were mainly around school and the expectations of others.
I was forcing myself to fit was all.
When I don’t force myself to fit – when I just get on with being me – I am perfectly happy. Now that I have read and read and read and informed myself, I am wiser.
Just like the majority of people in the world I had a narrow and inaccurate view of autism. I’m not like Rainman, I’m not like the boy in the Curious Incident of the Dog in the Nighttime, I’m not like Don Tillman in The Rosie Project, I’m not like Sheldon in The Big Bang Theory.
Those and other narrow views caused me to spend my life convinced I was not on the spectrum. But then all the reading and the studying of the lives of real people with real autism and, importantly, of women, with their individual not matching stories made me see what a vast and complicated spectrum it is.
A person with autism is a human being and an individual first. We are not part of a clan of people with matching needs, likes and dislikes. And we don’t have matching behaviours either! Just like people who are not on the spectrum we all have different struggles, different senses of humour, and different views. Some of us are feisty, some of us are gentle; some of us are sociable, some of us are shy; some of us hate noise, some of us love noise; some of us have hobbies that last a lifetime, some of us don’t; some of us are creative, some of us are not; some of us like sarcasm, some of us don’t; some of us have an amazing talent, many of us don’t! Some of us can cope with being teased, some of us take things too literally; some of us have a favourite chair, some of us don’t give a damn where we sit. Just like everyone else.
Some of us stand out as looking different, many of us don’t… etc… etc… etc…
We are not dangerous, broken, weird, wrong or waiting to be cured.
We just are who we are.
The hugest problem for most people on the autistic spectrum is the preconceptions and ignorance of others.
Sure there are some differences between brains on the autistic spectrum and brains not on the autistic spectrum. These differences can affect our senses so that some are more defined, they can affect our fear so that different situations can be more scary, they can affect our socialising because reading social cues can take place more slowly, and they can affect our organisation because doing too many things or switching tasks quickly can be difficult. They can also affect our energy and our sleep patterns because trying to not let our differences upset others is hard work.
Some people on the spectrum have such intense difficulties that they require a lot of care and struggle to be understood and to be independent. But behind those difficulties they are a whole human being.
Many of us don’t require much – if any – care. We simply want a world where we can live comfortably without anyone saying we are broken, inferior, or needing a fix.
The best fix the world could give us is respect and acceptance.
We just have to be allowed to be us and not think there’s anything wrong or unnatural.
All the things that are a big deal or can seem like a big deal would be much less of a problem if people could see that like left-handedness we just have to adjust our position sometimes to do the same things as everyone else and not try to be right-handed; like homosexuality we just have to be allowed to be us and not think there’s anything wrong or unnatural.
We are all different, all of us everywhere. Human beings are complex and intertwined. Race, sexuality, size, health, hair colour, shoe size, likes, dislikes – they are all differences. Autism is another one of those differences. Big deal.
Is it a big deal? No. Getting educated about it, putting to bed your preconceptions, seeing how society misjudged you and how you misjudged yourself is a big deal. But autism itself isn’t the big deal. It’s the way we fail to work around it that’s the big deal.
Seeing autism as a disorder, as something that has been caused like a disease, is damaging – it’s backward-thinking.
When I think of the stinking cold I am currently suffering from and the terrible night I had with burning throat pain and trouble breathing, how I am struggling to operate, I feel broken – I feel not right.
When I think of the terrible, dark days surrounding my father’s illness and death 6 years ago, of the days holding his hand or talking on the phone and listening to him talk about the progression of his illness, of his death, his funeral and the months following, I feel broken – I was not right.
But when I think about autism, about my own discovery and acceptance, I feel that society is broken, education is not right. I don’t feel broken – I feel perfectly alright.
Each and every one of us on this planet is on a spectrum of differences. When we learn to accept that and those differences as part and parcel of being a human being we can stop locking them away in categories marked “disorder”, stop looking for cures, and stop seeing difference as such a big deal, and move into a world where our perception of what a human being is is naturally wider and more accommodating. Once you educate yourself about something, you can stop making such a big deal of it, it seems.
Remember how we used to think of women as inferior to men? How we used to think of black as inferior to white? How we used to think of gay as inferior to straight? Well, we’re still thinking of autistic as inferior to not autistic and as something that needs a cause and a cure working out. Can we stop that please.