Today I’m wearing tumble-dried knickers. Tumble drying knicker elastic changes the feel of it significantly enough for me to spend the whole day being aware of it touching my skin. As underwear ages it becomes more and more uncomfortable and I have to throw it away. You can’t spend your life being distracted by knickers!
I am an adult autistic. We can manage these nuances and not speak of them. You won’t know what other “feels” I’m dealing with generally. But if I wasn’t able to control what I have to do to make my life more bearable you may very know all about it! Autistic people put up with a lot before they cry out in discomfort.
Autism has been in the news again recently. This time because a celebrity couple discovered their twins are autistic. With clickbait headlines about grief and despair rolling through social media, I avoided reading or watching any of it. I saw other people’s comments and decided I didn’t have the emotional energy to deal with just how crap it would make me feel and how much fight it would take to recover. And, to be honest, you never completely recover from derogatory language. The ways the outside world talks about autism hurt and offend me and other autistics deeply and yet no one asks us, they ask the non-autistic “experts” who don’t know – those who rarely, if ever, speak for us. Judgement and inference from observation and text books are not the same as direct experience.
We often feel as if you think we are locked in a room with a one way mirror and it’s okay to observe and speak about us like this because we are somehow other or elsewhere. We are not. We are here, among you, part of you, your words insult us.
It is assumed autism is based on a system of things gone wrong. It isn’t.
The negativity, the focus on disorder, on words like “illness” (wrong!), “disease” (wrong!) and on the parents (oh, please…) is all too familiar and I can’t cope with anymore of that right now.
When people think of “severe autism” they are often thinking of those who have a severe mental or intellectual disability alongside autism; those whose learning age never reaches above that of a young child, those who may always struggle to communicate or be understood. Severe mental/intellectual disability is not autism. It is sometimes a comorbid condition but it also exists outside of autism. It’s important to see that these are conditions that can be separated.
I would be devastated beyond words if anyone in my family grieves about me being autistic. My diagnosis saved my life and my sanity. I love how it removes all the other labels that didn’t fit and describes me instead as someone who’s been coping with too much for too long. In fact there are many people I wish had been around a bit longer to receive the news and hadn’t disappeared from my life thinking I was [insert alternative negative labels here]…
Children inherit autism from their parents. To be autistic means that one or both of your parents is autistic themselves or carries enough autistic traits of their own to pass them on to you through their genes. This could be the irritating stuff such as aversions to bright lights and noises; the (potentially!) manageable (though often misunderstood) stuff such as social exhaustion; the disorders such as anxiety; and the good stuff such as attention to detail and ability to hyper focus and get things done. In fact, many parents of autistic children aren’t aware that they themselves are also autistic because they only see the extremes of their child’s struggles and can’t see the other stuff. It’s a big old complicated spectrum and worth getting to know about properly from autistic people for the sake of autistic people. And not just one or two.
We are all extremely different.
Understanding and accepting which traits an autistic person has most strongly, and accepting and adapting for them is how to live with autism.
It’s the same for anyone. All humans. Each individual part of me that my assessor used to make up a picture of autism is something other non-autistic humans can relate to. I know other people who relate to my anxiety or my social exhaustion or my distress at sensory overload or my habit for getting lost in a task or managing time badly or struggling with poor executive function. Other non-autistics have traits that are on the spectrum which I don’t have. I’m not obsessive about a special interest and yet I know non-autistic people who are, I am not funny about sitting in the same seat in a familiar place and yet I know non-autistic people who are, I’m not frightened of change and yet I know non-autistics who are. I don’t have a problem with sarcasm and yet I know non autistic people who struggle to recognise it.
There is no stereotypical autistic or stereotypical non autistic.
It’s not autism in itself that’s painful.
It’s an extreme of any of the less manageable traits that’s painful, it’s lack of understanding and facilitation that’s painful. It’s often lack of preparation or willingness to change and absorb new ways of thinking by people who are imposing upon autistic people that is most painful.
Switching your thoughts to “Oh heck – I can see now how that really bothers you, exhausts you, repulses you, I must try to avoid over-exposing you to those triggers” is like medicine to an autistic person. It’s something I instinctively do for my loved ones even though they don’t have autistic diagnoses.
Don’t try to make people fit and then grieve when they don’t.
Autism is about maths. It’s about adding up the different ways life affects a person, adding up the intensity of each of those traits, and if the figure is a high one then they are autistic. One autistic person’s life could be entirely different from another’s because the traits that add up to make them autistic and the intensity can be completely different. It’s the same with all humans. It’s not about a disease or a malfunction – and for thousands like me it’s not about a disorder (I have anxiety disorder and sensory processing disorder within my spectrum of autistic traits but being autistic itself is not a disorder).
It’s about some extremes of normal humanness.
I prefer to think of autism as a collection of nuances – including some disorders – that can be individually present in all humans. Sensory processing disorder – when any or all of the senses can respond to stimuli in an extreme or intense way and cause distress or feelings of being overwhelmed can be present in autism but it is not exclusively an autistic disorder. Non autistics can suffer with it. Social anxiety disorder can be a problem for autistics and non autistics alike. Social anxiety can also not be a problem for some autistics who display little anxiety when socialising.
This doesn’t make autism on a line with autistic one end and non autistic the other. You can’t be in the middle and be a bit autistic. It’s more like a 3D Venn Diagram where all our behaviours, traits, nuances and struggles are in bubbles and if enough of them overlap then we are autistic.
We are the ones with the highest numbers of overlaps, we are the ones with the biggest number of struggles coping with social norms, we are the ones most bothered by rules that don’t apply to us, we are the ones coping with the extra feels. We are the ones who are quietly and not so quietly often very uncomfortable.
And we are not locked in or locked out, we are in the same room.
Deal with it.
Don’t grieve it.