Sunday 30 December 2018

Beware a harmful image (dissection included)

This post on a Facebook page for a local (not to me; further up-country) "Special Educational Needs" organisation popped up in my newsfeed this morning, in an autistics-and-allies Fb group I'm in. I don't know who originally created it because one of my friends encountered it today on Pinterest as well.

So consider this an open letter to the person who originally created this horrific, self-martyring, pity-party drivel. This is cruel, gaslighting, fearmongering, emotionally-abusive hate. If you are the creator, I hope you read what I and so many other autistic people are saying about it, and understand how harmful it is, and do better in future.

EVERYTHING about this is WRONG and here's why. The numbers below correspond to the numbers on the image above. As of about 5pm it's been removed from the page on which I saw it and a subsequent apology issued, with an assurance that it will not happen again. I certainly hope so! The autistic community will be watching closely.

I don't know what the original creator's intent or point was, but if it was to highlight any kind of systematic problem with support and service provision, it has utterly failed. This image is all about the appalling self-martyrdom I see among so many parents of autistic children, who make their child's struggles about how hard it is for them as parents, completely overlooking and ignoring how hard things are for the child. It exploits our struggles for the parent's desire for attention and ego-stroking. That is something that Needs. To. STOP.

It was good to see so many people (autistics and allies) pointing out how cruel, abusive and harmful the post was.

  1. The self-centred "Autism Parent" title that seems to be becoming more and more widespread. No. STOP IT. You don't parent autism, you parent an autistic child. You don't get to appropriate OUR neurology for YOUR identity, especially when you scream at us for using identity-first language for ourselves, when you use IFL for yourselves but deny us the right to do the same. That's something I'll be talking about in a future post because it warrants an entire article to itself.
  2. The accusatory tone that suggests it is our fault that the parent has to fight, that it is somehow our fault or choice that we need additional supports, rather than the fault of a fearful, ill-informed tragedy-and-burden-narrative-pushing society (of which certain organisations play a highly influential role in perpetuating) and a broken, resource-limited system that doesn't understand our needs or want to help us, along with an implicit, "You'd better be damn sure you repeatedly express your undying gratitude".
  3. The parent being blamed for the child being autistic - yes, it is horrible and unacceptable that that happens (and it does, frequently - it's a guilt-trip that the antivaxxers and the woo- and pseudoscience-pushing false-cure peddlers love to use, and a mentality that was commonplace in the past among clinicians, such as the false theory of the "refrigerator mother"), but the structure of this and the lack of clarification sends the message that it is our fault that the parent was blamed for it; this expression of frustration needs to be directed elsewhere, to those who told the parent that it was their fault. The current layout of the page clearly shows it being directed towards the autistic (expanded on below), which needs to be changed.
  4. Blaming the parent for autistic behaviours and being perceived as a bad parent, much the same as point 3, needs to be directed to a more appropriate figure, such as an ill-informed society.

  5. Learning how to fight lawyers in order for suitable education to be provided is also said in a very accusatory manner, as though it is the fault of the autistic person for having additional needs. Yes, it is incredibly tough on a parent to have to fight for their child's right to education and they should not have to; however, again it is the layout that is the problem here and the tone. This, like points 2, 3 and 4, need to be directed to appropriate targets  (those in positions of power who make the criteria, funding decisions, etc), not blaming the autistic person in the way that this image implies.
  6. Declaring themselves as more knowledgeable about autism than any other NT is incredibly arrogant and disingenuousto those NTs who work with a wide range of autistic people and other parents, and this arrogance frequently comes across when Paaaaaarents (by which I mean a particular subset, among the Martyr brigade) when they try to silence autistic voices and their allies.
  7. The 80%-divorce-rate statistic is utter bollocks and has been repeatedly debunked - and not even recently! This is a bogus figure put out by Autism $peaks (I know, I know, no surprises there) purely for fearmongering purposes: Relationship status among parents of children with autism spectrum disorders: a population-based study and Autism Families: High Divorce Rate is a Myth
  8. Losing friends because of "caring duties" is called BEING A PARENT, regardless of the child's neurology, and to be quite frank, if the friends can't understand this and aren't willing to accept your child's needs, or understand autism, they're probably not people you want in your life anyway. And again, the layout of this image directs the blame towards the autistic person. You DO NOT get to blame us for the behaviour of other adults. Our neurology is not the cause of other adults' douchebaggery and lack of consideration.
  9. The loss of a job because of "caring duties" - again, a lot of this is called BEING A PARENT and many parents find themselves leaving a job because of childcare commitments/the cost of childcare. This is not unique to parents of autistic children. You aren't a superhero just for doing what you signed up to do when you decided to have a child. And the use of the word "duties" makes it out to be a chore and leaves an unpleasant taste in the mouth. Further, if society ensured the right support, the loss of a job would not be as big a problem as it currently is - again, not the fault of the autistic person.
  10. Mental-illness rates being higher among parents of autistic children may be true, but yet again this is presented as being the autistic person's fault. This needs to be directed towards those limiting support services and those perpetuating the burden/tragedy narrative of autism that spreads the fear that is so prevalent around our neurology. One of the biggest problems facing the autistic community is the dominant narrative that autism is some sort of death sentence to everyone's lives, that we are a burden, a drain on resources and society, that an autism diagnosis is life-destroying. It is NOT OUR FAULT that the institutional structures, financial decision-makers and society at large are failing parents. You DO NOT get to blame us for that. Blame groups like Autism $peaks and others who talk about us as some kind of disaster. When society creates that much fear around it, it's going to have a knock-on effect on those dealing with it. Tear down the barriers, the misinformation, the fearmongering, the systematic anti-autistic narrative, and things will be infinitely better.
  11. Declaring that parents sacrifice so much is an incredibly heavy (and wholly unfair) burden to place on us, and is very much misplaced. I see this refrain constantly from the Martyr Parent ranks. What do you want, some kind of jewelled golden crown being brought to you by a host of angels, just for BEING A PARENT and doing what all good parents do as par for the course??? Every parent, regardless of their child's neurology, makes some sort of sacrifice; your child being autistic doesn't make you any different or more special than those with NT children. And before you say, "But autistic children are harder to parent and require more work!", STOP. Think about the impact of that, the message it sends. Also, it's not true. My mother will happily tell you that I was far easier to parent than many of the NT kids she taught (or attempted to teach) over the years. I have seen quite a few parents who have kids with both neurologies say that their autistic child is actually far easier and less work than their NT child.

    Additionally, they don't "know more about autism...than you can possibly imagine". I'm pretty sure those of us who ARE AUTISTIC, who LIVE autism with every sub-atomic particle of our being, know at least as much as these parents, and certainly more about the direct experience, because however much of an expert in autism an NT might be, it is all from an external, detached position. They do not know it in the same way that we do. I'm pretty sure that we know at least as much as you.
  12. Claiming that nobody helps is an oft-uttered refrain from the Martyr Parent brigade even when there is help. Generally what they mean, when you dig a bit deeper and unearth the real meaning, is, "Nobody can make my child NT". Yes, some do struggle and in a lot of places there are limits on supports and services, and some people don't really get any support, but this is far too much of an over-generalisation, and I have seen many Paaaaaaaaaarents dismiss the offers of help when it's not the kind they want (even when it's better, such as recommending OT in place of the abuse that is ABA). If I had a pound for every time a Martyr Parent dismissed autistic input and then persisted in claiming nobody will help, even when the autistic people have been doing so, or when family members and friends have offered to help but not in the way the Paaaaaarent demands, I really wouldn't be worrying about how I'd be able to pay my bills each month.
  13. The young man is clearly meant to be a caricature of us autistic adults who call out the Martyr Parents, presenting us as ungrateful brats who don't understand or appreciate how difficult we are on them and who are directing our frustrations in the wrong directions. It is an active attempt to silence those autistics who are trying to look out for the current generation of autistic children, to make things better for them and to stop them being put through the things we were forced to endure. It is an attempt to guilt-trip and manipulate us into staying quiet because then the parents don't have to confront the fact that they may possibly have been getting it wrong.
The layout, with the parent character facing towards the autistic-adult character, with no other character, sends a very clear visual message that the parent is directing their accusations at the autistic, which is completely inappropriate. There are no other figures in the image to which these statements could and should be directed, and so, consciously or unconsciously, that is the message being sent. That it is all the fault of the autistic person for being autistic, that we are a burden and too difficult, and ruin parents' lives. No. You don't get to do that to us. You don't get to gaslight us.

Layout and design matter. They communicate with the viewer.

This image is abusive, gaslighting, cruel, harmful and dangerous. It perpetuates the othering narrative of autistic people as a burden, people to be feared, hated and cast out, and as ungrateful brats who don't know what's good for us.

It is victim-blaming and that is NOT OK. It is NOT ACCEPTABLE to blame an autistic person for the difficulties they face and it is NOT ACCEPTABLE to make the autistic person out as the villain when the fault lies with a lack of support and service provision, with those restricting finances to fund those resources. You need to place the responsibility of shortfall with them.

You know who the parent character here reminds me of? Vernon and Petunia Dursley in the Harry Potter books. At some point I will likely edit this post with some direct quotes but not right now. I know that I am very lucky to have not had parents blame me for simply being autistic and for being a burden on them or making their life oh-so-hard, or tell me how grateful I should be because of everything they've ever done for me and I should be on my knees in overwhelming thanks just for being given the basic necessities of life, but I have encountered a disturbing number of autistics for whom this is their experience. It's horrific, and has left them with serious long-term mental-health problems. THAT is why things like this are so dangerous and cause so much harm. THAT is why autistics continue to speak out against things like this.

There are far, FAR better ways to talk about us and the struggles that can ensue from systemic shortfalls and damaging societal narratives than this self-serving, guilt-tripping drivel.

Finally, regarding the statistics given for the friend/job loss and mental-illness comments (we've already established that the divorce figure is utter rubbish), from where are these figures sourced? If you're including specific numbers, you need to give the source. Anyone can write a number and claim it's a statistic, but it's meaningless if they're just made up, and actively dangerous if they're being used to perpetuate fear and harm. What are you going to do with those figures, creator of this post? Stick them on the side of a big red bus and drive it around the country claiming it as fact?

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