There are some pieces of personal writing that I want to love, because they push an important point into the spot-light or provide a new take on a worn issue. A particular issue that concerns me when it comes to autism, is the glorification of autism as a gift or as inevitably associated with genius, or as mere difference and that the only thing that needs fixing is societal attitudes. This glorification or romanticising of autism, may be done with the best of intentions (to lessen stigma and encourage acceptance), but it always comes at the price of shuffling those in the highest need off to the side, even to deny their existence and severe challenges, when it is exactly this group of people who need the most attention and resources.
Here’s the problem though: The pieces I most often encounter that highlight this important concern about the side-lining and ignoring of the most needy, almost always come hand-in-hand with other highly controversial or damaging views about the nature and existence of autism. Of course the people who write the pieces don’t think their views are particularly damaging, otherwise they’d hardly be writing and sharing them with the open aim of support and help for those with autism. But the upshot is the same, their opinions get rubbished for the points people disagree with, instead of paying attention to the issue they are highlighting; the twisting of autism into something it isn’t, to the detriment of those most in need.
Three particular regular autism bloggers come instantly to mind as fitting in this category, though I won’t name them because I move in the same blogging circles and I have no interest in alienating them in this post (they are good people in my personal opinion, despite the disagreements). Today though I came across a piece that once again fits the mold: Someone raising the issue I’m talking about, but then doing something so utterly cringe-worthy in the post that I couldn’t bring myself to share it (on Twitter, Facebook), and even hoped it wouldn’t be seen too widely because of the negative light it casts on the otherwise important core concern.
The piece is called “Autism in the Shadows,” and since it’s on a very public website – The Washington Post – and not simply a personal blog, I feel that it’s more than fair to very publicly share my concerns considering it can access such wide readership through that forum.
Most of it is fine: tackling how the media and certain high-profile people love and dwell on the high-hope stories of the high-functioning, whilst ignoring the intellectually disabled and most in-danger on the spectrum. (I know some will think the most severely autistic get plenty of coverage in the news, but try to understand that the ability for those with the most severely affected children and family members – not least of all the individuals themselves – to share their stories, is necessarily lesser compared to those who can communicate and express themselves clearly in some form. I see this at play more and more in the media, and at least some of the public has swallowed the view that all autistics are geniuses and types of savants.)
The problem comes in at the end: The writer of the piece pleads with us to see the pain of the parent whose child smashes their head against the concrete wall, to feel the anguish of compassionate caregivers while people stare and judge the autistic person, and the grief of parents who have to accept their child may never be able to care for themselves.
When I read that, I was astounded. Why isn’t she highlighting the pain of the individual smashing their head, of the person being judged and stared at, of the person who can’t care for themself? It can’t simply be because they can’t speak for themselves, because we have the ability to empathise with physical pain and humiliation and powerlessness; even those with intellectual disability and severe autism are capable of feeling and understanding such emotions (arguably not all at the very worst end, but the vast majority show they feel and suffer from these things.). Should not we be expecting people to empathise with those who hurt and suffer, not solely with their caregivers? As hard as it is to watch your child smash their head to the point of damage, is it not worse to be the person driven to such behaviour (be it by sensory issues, frustration, or something else outside of their control)?
Yes the stories and perspectives of their carers matter and yes they are often how we’re going to hear of these experiences, but to empathise so strongly the suffering of the watcher over the experiencer, strikes me as somewhat bizarre and even twisted. My problem with this is all the stronger in the context of the broader issue, because it is exactly this sort of prioritising – of the carer over the autistic individual – which is the frequent attack made on those who bring the issue to the spotlight: That they aren’t interested in the perspective of the autistic person, and if they were they’d stop wanting a cure and just learn to accept the autistic individual. When we see these perspectives thrown together in the same piece – autism is romanticized and let’s focus on the pain of the carers – it just drags the discussion off in another direction instead of focusing on the point that matters: Helping those most in need as a priority for autism care (for unfortunately, it is a world of priorities in many senses when it comes to autism support).
And so I cringe, and so I don’t share the piece because I know the attacks it will receive, and so I find myself wishing once again that autism politics wasn’t so out of control in the way it is, in the way that frequently silences people’s genuine experiences and concerns out of fear of unintentionally upsetting some sector of the autism community. I suppose that is what I’m also cringing at then; what autism politics does to our voices. I find that point hard to dismiss though (and I won’t), because paying respect and using the right language are important and powerful tools for the rights of all autistic people. There is no single accepted version of the right words in the autism community though, you will always offend or disgust someone, at some point you just need to speak the truth (or your truth, if you prefer), and let the public consume or spit it out accordingly. When it comes to personal opinion pieces, they are, after-all, personal opinion pieces.
And this is just my own then, feel free to attack or love me as your mood takes you, but spare a thought anyway for the autistic individuals who cannot speak for themselves, because in all the politicking, their voices still too often remain undervalued and unheard.