The Real Tragedy of Autism

Good morning, lovelies, and welcome to another Autism Awareness Week rant! I am talking a lot about autism this month, and I’m also making autism relating videos for my YouTube channel (check out the link at the end of this post). As an autistic person, this month is obviously pretty important to me, and I want to take the opportunity to spread some knowledge. But it’s important to remember that while a lot of the things I’m discussing have a basis in structural issues, every autistic person is an individual, with individual needs and preferences, so you can’t assume that every other autistic person feels the same way I do.

Today I’m going to be exploring how ableism is what makes life difficult for autistic people, rather than autism. And by ableism, I don’t just mean yelling slurs at autistic people across the playground. Anglo-Australian culture doesn’t value our lives, and this shows up in a variety of ways, from overt violence to the well-meaning belief that autistic people need ‘protecting’ from, well, everything. Sadly, despite what we’d all like to believe, ableism leads to the abuse and death of neurodivergent and disabled people every week. Even organisations that are supposed to ‘help’ us often perpetrate ableist ideas and abuse against us. We’re painted as universally ‘vulnerable’, our lives are ‘tragic’, ‘difficult’, ‘a puzzle’… Yeah, you get the picture. And that picture is thoroughly fucked up.

So where do we even start to combat this belief that our lives are less useful, less valuable, and more tragic than allistic (non-autistic) people?

Firstly, we need to ditch the idea that ‘use’ equals ‘value’. Some of us can’t hold down ‘regular’ jobs, and that isn’t actually a tragedy. It doesn’t make us a waste of space, and it doesn’t make our lives awful. Nor should the financial burden for our lives be placed on our families. Every person should be able to depend on support from the state as needed – and some people will need more than others. But we also need to consider that not only are there plenty of autistic people willing and able to work in all kinds of jobs, if employers and workplaces would take the trouble to make their workplaces supportive – or even just consider that we are capable of doing the work in the first place – there are autistic and disabled people working jobs that aren’t considered ‘valuable’, and who are paid far below minimum wage because people think they can take advantage of us. We’re caught between a rock and a hard place. People don’t want to employ us unless they can take advantage of us, but we live in a capitalist culture that only considers us valuable if we’re employed.

What about all the other things that make people valuable? What about the art we create, the volunteer work we do, the relationships we form, the people we love, the people we are? These things have an inherent value far beyond the economic, and it’s about damn time we start acknowledging that.

Secondly, we need to salt and burn the idea that we can be ‘high-functioning’ and ‘low-functioning’. This basically divides all autistic people into a binary – those of us who choose to fake being neurotypical, and those of us who choose not to, or who can’t. Those of us in the first group get offered no support, because people assume we’re ‘normal’ and don’t need it. Those of us in the second group get excluded from neurotypical – that is, mainstream – society. This is bad news for all of us. For starters, ‘high-functioning’ is completely meaningless. Just because my autism seems mild to you, doesn’t mean it’s mild to me, it just means I’m good at pretending not to be autistic. ‘Low-functioning’ is just as meaningless. Someone can be non-verbal*, or constantly stimming**, or echolalic***, but can be a great accountant, a good student, an amazing artist, a brilliant child-care worker, a loving family member – there are no limits except the ones we’re told exist. The moment you’re ‘visibly’ autistic, people assume it means you’re less capable than other people. There are people who are institutionalised, who are literally locked up with strangers, because their families and carers never bothered to learn how to communicate with them, or how to accommodate their needs. These people’s lives have been made into tragedies because of the ableist assumptions made about them. But if they had the understanding and love they deserved, they would never have needed institutionalisation – their lives would not have been tragic at all.

THERE ARE CHILDREN MURDERED BY THEIR PARENTS BECAUSE THEIR PARENTS NEVER SEE THEM AS FULLY HUMAN, BUT AS TRAGIC BURDENS. THERE ARE PEOPLE WHO CLAIM TO PROMOTE THE RIGHTS OF AUTISTIC PEOPLE WHO SYMPATHISE WITH PARENTS WHO ARE MURDERERS. THIS IS WHERE ABLEISM LEADS US, AND IT’S WHY THE AVERAGE LIFE EXPECTANCY FOR AN AUTISTIC PERSON IS 18 YEARS OR MORE BELOW THE NATIONAL AVERAGE.

Thirdly, we need to destroy the idea that autism means a lack of empathy, and that a lack of empathy makes someone a bad person. This is a complicated concept for most people, so I’ll break it down. Autistic people do not necessarily lack empathy – in fact, some of us deal with hyperempathy, which I’ll tell you, is no picnic. Just because we can’t communicate empathy, or communicate it in a way you understand, doesn’t mean we don’t experience it. It can be very overwhelming to experience empathy and not be able to express it. Some autistic people don’t experience empathy as neurotypicals understand it, but this doesn’t make them ‘bad’ or ‘unfeeling’. It just means that neurotypical social responses don’t make sense to them, or that they experience emotions in such a different way to neurotypicals that they can’t connect on that level, or that they’re overwhelmed by their sensory issues – or by the challenges that come with trying to socialise on neurotypical terms – that they don’t have the emotional space to take on someone else’s emotions as well. This doesn’t mean they don’t care, just that it’s hard for them to understand. A lack of empathy (or a lack of empathy-as-defined-by-neurotypicals) isn’t the same as being unfeeling, and the idea that neurotypical empathy is a prerequisite for being a decent human being is incredibly harmful. (This also hurts many other neurodiverse people, such as people with personality disorders etc.) Some people believe we’re inherently violent because we lack the ability to empathise, but the truth is very different. Some of us, particularly as children, can be violent. BUT, and this is vital to understand, we are not violent because of our autism. When we are violent, we are violent because the people who are supposed to be caring for us and understanding us refuse to do so. When we are violent, it’s because people try to force us to behave in neurotypical ways that are physically and emotionally painful. When we are violent, it’s because we’re stuck in a neurotypical world that doesn’t want us to exist. When we are violent, it’s because of ableism, and not because of autism. Long story short, autistic people often do experience empathy (and love, and the full range of human emotions), but they don’t experience or express it in the same ways as neurotypicals. And those of us who don’t experience empathy can still be caring, loving, wonderful human beings.

Finally, you – that is allistic people, and the world in general – need to listen to autistic people when we tell you about our experiences and what we need. And what we need are not institutions, ‘cures’, or therapies to ‘make us normal’. We need a world that is more understanding, and one that is willing to listen. Within the autistic community there is a level of strength, compassion, and support that is rarely found anywhere, and yet we are still treated by the wider community with a contempt and ignorance that literally leaves us on the outside. We are portrayed as unfeeling, as mentally deficient (whatever that means), as incapable, as an annoyance – at worst, as actually dangerous. But we are loving, caring, valuable, thinking, feeling human beings. There are more ways to value human beings than the ones we currently acknowledge. There are more ways to learn, more ways to think, and more ways to be human than we can currently comprehend. But the world would be a better place if you would try.

There are autism-led movements starting to build strength, there are autistic people writing and making art that talks about our experiences, and there are autistic voices being raised in our cause all over the world. If you do nothing else this April, please spend ten minutes finding some of these voices and giving them a boost. The first step to breaking down the ableism that keeps us trapped and oppressed is knowledge. We have a lot to teach you, if you’re willing to listen.

Instead of raising your voice this Autism Awareness Month, please help by raising ours.

*non-verbal: many autistic people find it difficult or impossible to communicate verbally. This can be some of the time, or all of the time. Sometimes we communicate with sign language rather than verbally, sometimes we use computers or other support mechanisms. Sadly, people often assume that non-verbal = unable to understand. This is hardly ever the case. If people took the trouble to communicate on our terms, being non-verbal would cease to mean ‘non-communicative’.
**stimming: “a repetitive body movement that self-stimulates one or more senses in a regulated manner”. The best analogy I’ve heard is taking the lid off a boiling pot to let the steam out. The most commonly represented is hand flapping (which I have to say, feels pretty good, it’s one of my stims), but it can also be jiggling your leg, tapping your feet, clicking a pen, nodding your head, bumping your head against a flat surface behind you, bouncing on the balls of your feet – whatever your body feels like doing at the time. It’s not always a repetitive movement – it can be a particular sound, putting pressure on a particular part of your body by hugging or with tight clothing, it can even be as simple as turning the head to look at the world from a different angle. Stimming is a coping mechanism for autistic people – for us, the world is always turned up to 11, and it can be very overwhelming. Stimming helps syphon off some of the stress and make it easier to cope. While stimming is most associated with ASD, people with anxiety, PTSD and related conditions also stim for similar reasons, and sometimes neurotypical people do it as well.
***echolalic: echolalia is “the tendency to repeat mechanically words just spoken by another person”. This doesn’t just apply to words, but also to sounds. A lot of autistic people have mild echolalia, which results in us involuntarily imitation accents, words, and sounds made by others. Sometimes people assume we’re making fun of them, but it’s not something we do consciously. In some cases, autistic people have very little independent language, and simply copy what other people say without being able to verbally communicate themselves. This doesn’t mean they don’t understand what they’re copying, or that they don’t have anything to say themselves. It just means that they struggle with verbal communication. As with non-verbal people, assuming that echolalic people are intellectually incapable of understanding speech is a big mistake. They are often communicating in other ways, but neurotypical people aren’t willing to understand.

For more content, check out my social media:
http://www.facebook.com/cambreypayneauthor/
https://www.youtube.com/watch?v=NUYrluCKW4s&list=PLmL6Dj1MgLnlbO2RILYQFXZp8canaP6ou&index=1

 

All Rights Reserved to Cambrey Payne 2017. Please acknowledge sources when sharing and do not repost without original source.

Image from: http://abovewhispers.com/2016/04/02/16-autism-myths-debunked/ – this links to a reasonable article debunking some myths about autism, although it’s not written by an autistic person, so is lacking some of the nuance necessary to full understanding.

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