Cringing at Autism in the Shadows, and Autism Politics

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.

By Jack Keene, via Flickr

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.

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10 Responses to Cringing at Autism in the Shadows, and Autism Politics

  1. nostromo says:

    Wow, when I read that line “The writer of the piece pleads with us to see the pain of the parent whose child smashes their head against the concrete wall” I had the same flabbergasted reaction as yourself, and my mouth almost fell open. thing I’ve learnt, being the parent of a low functioning non-verbal child with Autism, you just get sh*t from other members of the “Autism community” no matter what you do. Both from other parents whose children have ASD but who do not have an intellectual disability, and from adults with ASD. You’re not supposed to want a cure..(because Autism is an expression of neurodiversity and does not need a cure) you’re not supposed to use ABA, and you’re not supposed to speak for your child even though they can’t speak for themselves. I am not actually sure what you ARE supposed to do, but best I can tell is just have faith that they will be what they will be, and it will be OK.

    • It is a huge problem with the more extreme end of the Neurodiversity movement: the many messages about what not to do, but little in the way of support or guidance on how to help the lives of those most severely affected by autism. It creates a lot of frustration and isolation of those trying the hardest to help their child lead a happy and hopefully eventually independent life. Thankfully there are others who genuinely want to help whilst also improving attitudes and understanding about the reality of autism, unfortunately they don’t seem to get the same attention or platform as the more vocal extremists. I guess the more moderate and practical approach isn’t as “interesting” as the extreme views.

  2. M.J. says:

    I think the point you are missing is that the effect of autism on the parents and the entire family is another one of those things you aren’t supposed to talk about. You aren’t supposed to point out that autism isn’t a gift. You aren’t supposed to point out that autism isn’t just some “difference”. And you most certainly aren’t allowed to point out what autism does to you as a parent.

    Yes, a lion share of the “joy” of autism is bestowed on the individual who has autism. But a large share also falls on the parent – especially for children on the “lower” function side of the spectrum. That is another one of those things that no one wants to hear.

    To give you an example, my twin daughters with autism do not sleep well. They are up almost every single night for hours and have been for going on eight years now – it is a part of their autism. You might have to imagine the impact that has on their ability to function during the day.

    I don’t have to imagine because I am up with them almost every single night and have been for eight years. I know exactly what it feels like to not sleep and exactly what impact that has on your ability to function because I don’t sleep either. My ability to function – for years – has been severely compromised due to do a lack of sleep.

    But, under your logic, if I said that I haven’t slept through the night for more than a day or two in a row for eight years, you would be asking why I wasn’t talking about the difficulty involved for the kids. You might be aghast that I was talking about the impact that this has on my wife and I and not about the impact it has on the children. But the unfortunate truth of the matter is that this chronic lack of sleep it impacts my entire family.

    The writer of the piece that you are talking about might have been better able to make their point, but the point is still an extremely important one. Autism isn’t all about the effects that it has on the individual who have autism. It is also important to talk about the impact that it has on the entire family.

    But how about a real example? Lets forget the easy stuff like the autistic tantrum, sensory issue, or restricted behavior/rigidity, those are relative child’s play. Lets talk about some really challenging behaviors like SIBs. Let me ask you, have you ever watched your child kick the shit out of themselves?

    In a way, you are right. When the writer was talking about a child smashing their head against a concrete wall they probably should have pointed out that the child engaging in SIBs needs help. But, and maybe this is just me, that seems a bit obvious. A person who is purposely hurting themselves is not in a good place.

    What is less obvious is the effect these behaviors have on the parents. Do you understand what it is like to stand by and be helpless to prevent your child from hurting themselves? Do you understand what it is like to have to restrain your child so that don’t hurt themselves?

    I don’t know whether you do or don’t but I suspect you don’t. Because if you did, if you had been there yourself, then I don’t think you would criticize someone for pointing it out. And once you grasp that bit of reality, try to imagine having to deal with that in front on an extremely unsympathetic audience, such as the the general public, who doesn’t understand the basics of autism let alone some of the more unpleasant aspects of it.

    I’ve been there more times than I can count and I am extremely glad that we have largely worked past such issues – for my sake and especially for my daughter’s sake. But I can’t stick my head in the sand and pretend that issues like that don’t exist. And I certainly can’t pretend that dealing with it didn’t take a toll on my family.

    • As usual MJ, we have more common ground than I think you realise. I do think the parents perspective is vital and cannot and should not be ignored, my issue was that the experience of the person most effected seemed to be sidelined and downplayed (or even ignored) in the writer’s piece. I don’t understand why she put the focus entirely on the person watching, and not the person experiencing, perhaps it is because of what you say; that the suffering of the individual effected is so obvious it can go unsaid. However, the autistic perspective is often ignored and this approach just appears to perpetuate that impression. I also pointed out that these issues often arise because of over the top autism politics, which is a concern of mine too.

      I must say, I am more than a little “miffed” that you think I don’t and can’t understand self-harm and have never seen my child hurt himself. I have written many times about the severity of son’s autism in the past, including the fact that he had bald patches from certain behaviours, banged body parts against the house over and over, and didn’t seem to comprehend pain he caused to his own body even when it was obvious to others. Has he banged his head against concrete? No, but I have a parent friend that had a child who did exactly that, I watched alongside her and saw her struggles to contain and cope with the behaviour, I was compassionate to both her and her sons’s pain, but more so her son’s since he was the one in pain and in distress, yes I think his pain matters more if we have to choose a hierarchy (which we shouldn’t have to). The point is don’t presume I don’t understand and haven’t seen the worst of autism, I saw it and lived much of it. Yes my son is comparatively high functioning now, but he is still unambiguously autistic. This gives me the ability to understand the perspective of parents of autistic children from both ends of the spectrum, but this doesn’t mean other parents can’t or don’t disagree with the conclusions I reach based on my experiences and observations.

      As always, I do appreciate your comment, even though we don’t agree on all points. I do though think we agree on the major point about the importance of hearing about those most in need on the spectrum.

      • M.J. says:

        I’m actually not sure that we do are that close together in what we are saying, so let me put this a different way.

        You seem to be saying that while it is a good thing that we acknowledge that the “lower” side of the spectrum exists and that their needs are different from the “higher” end that it is not a good thing to think of the impact of the “lower” end on parents instead of always putting the individual with autism first.

        And, if that is actually your position, I disagree with you. It has been my experience that you have to sometimes think of the impact that a child’s disability has on the caregivers and sometimes allow the caregivers to think of their need and feelings ahead of their charges.

        If the opposite is always true, that the disabled child’s needs always come first and foremost then what you do is burn out the caregivers. The message to the parent’s should not be “I don’t care what this does to you, suck up and deal and always put the kids first”.

        The message to the caregivers should be that their charges come first most of the time but they should take the time, some of the time, to put themselves first so they stay sane and healthy and are able to take care of their children. Part of that idea is that the caregivers needs to be able to talk freely about their stresses and how their child’s disability impacts them without having the autism community jump down their throat and tell them how wrong they are for thinking or feeling that way.

        The writer seems to be pointing out that society at large needs to understand what the caregivers are going through in addition to understanding that the spectrum isn’t all “differences” and “gifts”.

        • Just a brief reply to say that I am currently very sick (off to the doctor today), but I will reply when my mind is clear enough to understand and respond meaningfully, because I would like to reply but I’m having trouble processing today.

        • M.J. says:

          No worries, I hope you feel better soon.

        • OK, I’ve had time to read and think about your clarification, and I can firmly say that our views in this area are in agreement. (Or at least, I think they are.) However, I do not think that the vital importance of recognising the needs (and frankly, the individuality) of the caregiver, meshes with what the writer did in that article: She was arguing for hearing and paying attention to those at the lower end, but then supported it by calling for us to empathise with what the caregiver sees and goes through, and she did so with apparent (but not intentional) disregard of the individual suffering the thing that is being watched (ie, the autistic individual). Surely, in the context of what she was writing, it would have made sense to either highlight what the autistic individual was going through, or to pay attention to both the caregiver and the autistic individual, rather than what appears to be an exclusive and strong focus on the caregiver?

          Here’s the thing though: I don’t think it should matter that she made the (arguable) “mistake,” I think we should and need to hear from many different people involved in autistic lives (including professionals, parents, carers, autistics, etc); the reason it looks like and may get treated as a “mistake” is because autism politics have got to the point that we are hypersensitised to who is being heard and who is not, instead of just listening and learning from whoever is doing the talking. In the autism politics world, we act like there is only one microphone to go around, and hearing one voice means you can’t hear the other. Because we (and here, I include “I”) are hyper sensitive to this, we lose sight of the key message while we argue about these other matters; that was what I was trying to say in my post. I can see where my point might get confused because it looks like I’m repeating the error I’m attacking, and that’s what I think you’re picking up on, but I (apparently unsuccessfully) am actually trying to attack that very thing in my post; reflecting on what has happened to our dialogues.

          I don’t know if that helps, or just makes it harder to understand my point. When I wrote the post I was sick, and I’m still sick (currently on antibiotics) so there is a good chance I am not expressing myself as well as I could and should be.

          There are broader questions about who is the “most important” in the autism world, whether there is a hierarchy of need, and the importance of caring for the carers, and that is an important discussion in itself. But in the context of what the person wrote, I felt she had made an error that was rather obvious to me thanks to autism politics and that others would attack very readily while missing her more important message (and others responses to me have reinforced my view that I was correct about this).

    • And just for the record, a 2010 post of mine detailing how extreme my son’s autism was back when I started blogging, in case you want some idea of what our family has been through too:

      • M.J. says:

        “The point is don’t presume I don’t understand and haven’t seen the worst of autism, I saw it and lived much of it. Yes my son is comparatively high functioning now, but he is still unambiguously autistic. ”

        I’m sorry, I was not questioning your experiences with autism. My point, which perhaps I stated badly, what that I understood exactly what the writer meant because I have been there many times myself.

        I know I have been in public with one child who I have had to restrain to stop her from doing serious damage to herself while my wife was dealing with the other two who were melting down at the same time. I know quite well how the general public deals with such spectacles and I know exactly how it feels to be that parent.

        I know the kids are having a bad time with it but I also know that it can suck to be that parent. I don’t see the problem with acknowledging that parents are having a rough time with it as well. They get it from the kids, the general public, and apparently from the autism community as well who should be able to empathize.

        Maybe you understand that situation too, I really can’t say.

        I’m not trying to play the mine is worse than yours is game. But I suspect that our experiences are different and that we are in a different place with respect to autism. Those differences are why what the writer is saying makes perfect sense to me while you don’t seem to like the message as much.

        My children could best be described as “mid” functioning. The don’t have the communication skills to be considered high functioning but they don’t have enough behavioral issues to be considered low functioning. That is until you try to deal with all of their individual problems at the same time and that is when the fun begins.

        I know I don’t understand what a parent who had a child with severe autism goes through because their problems are going to be quite different from ours. I also know that I don’t understand the problems that a high functioning child has because I don’t have to deal with those problems either.

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