The Non-Murdering Parent

There is an ugly, nasty, and logically incoherent view-point that I prefer not to dwell on, because I like to think it is so extreme that no one would provide a public or reputable forum for this view to be heard: The view that parents of autistic children are abusers and murderers in-waiting. You may think I’m referring to our old friend Bruno Bettelheim and his thoroughly discredited and despicable notion that autism is caused by cold distant mothers. Or maybe I’m thinking of the all-too-many ignorants in society who believe autism does not exist and is really just a parent’s way to refuse to take responsibility for their own poor parenting, allowing the parent to drug their unruly child into submission.

Photo by Kristy, via Flickr

But no.

I am referring to the view that you will readily find on a few (all too popular) blogs and Facebook pages: that parents of autistic children are actively abusing their children everyday by using evidence-based therapies like ABA; and comparing parents who disagree with particular view-points or who dare to share the hard reality of raising children, to the deeply disturbing examples of parents who have tried to take their autistic child’s life (and often their own life at the same time).

And what group of people share such outrageous, upsetting, misguided views as these? Surely they would be people we can dismiss out of hand because they’re just trying to bully or troll? The key group sharing this view, is made up of autistic adults. That is to say, a group of people we should always be keen to hear and understand and support; parents more so than anyone else want to hear them, because they grant us a window into the lives of the people we love more than anything else in the world – our own children.

Thankfully, and I hope obviously, those who say such things are an extreme few, and not the thoughtful majority of autistic adults. The vast majority of autistic adults I have ever met in person or online or through their own books, are so kind and thoughtful and considerate that it would distress them to know they had caused pain to others. In my experience – and this is only my experience – they will go to pains to make sure people (including themselves) act and speak respectfully and do the right thing by others. I am glad my son has these kind autistic role-models, and I would be so proud to have him turn out to have their same level of humanity and empathy. Indeed, my son doesn’t like to make others upset or angry or disappointed, and actively seeks an understanding of what he may have done to cause the distress in others and how he might avoid it in the future; not because he is some lap-dog or mindless follower, and not because he is weak or has no strong opinions, but because he is just a sweetheart with a sweet heart who genuinely cares about people.

How then do we make sense of these few autistic adult extremists who seem very ready to treat all parents of autistic children as would-be abusers and murderers, who treat women like me who dedicate our daily lives to our children as if we need to be carefully scrutinized because at any moment we might crack and kill our kids (and I wish that was an exaggeration of their views!) We should surely treat them the same we treat anyone who holds an extreme and unsubstantiated view that groups others together under a damaging stereotypes: As themselves non-typical of that group, as rather an extreme and dangerous example that can and does damage the wider group at issue. That is to say, the exact same way we should treat the minority of autism parents who do actually abuse or kill their children: As extreme and dangerous and a-typical.

But isn’t that just dismissing the views of some autistic adults? I guess it is, in the same way that we may wish to dismiss the views of the few autism parents (or whatever other group you like) who also wish to cause others harm based on unfounded stereotypes.

But maybe it isn’t unfounded, maybe these extreme views are the deeper truths that we must hear and take to heart. From what I’ve read, these few extremists are grouping together all ABA therapy as if it was the worst examples we had decades ago, and are grouping all autism parents together in a basket with the mentally ill. I am not mentally ill, and even if I was, I wouldn’t appreciate the mentally ill being used to political ends by others to argue a wider point about how people should parent their children. That would strike me as cruelly dismissive to the complexities that people face when they have reached a point where they would even contemplate killing their own child and themself. By even saying that sentence, I would similarly be attacked for daring to show “empathy” to a killer, but to understand the ill mind is not to excuse or justify what it does within that illness. (Please understand that I am not saying all who kill themselves and their child are mentally ill – though some clearly are – to see further on those complexities, please click through to my post on the point.)

If we try to focus on the relevant facts of what autism parents are actually like and actually likely to do, we can surely work up from these grounds (none of which support the extremist views I am upset about here):

(1) The people in this world who most love and most want the best for an autistic child, are almost invariably the parent of that child. The few cases where this is objectively not true, are arguable no different from those where parents of non-autistic children abuse and hate their children; they too are aberrations, not the norm.

(2) Many autism parents are themselves either autistic or have enough autistic traits to have insights to their child’s behaviours. We are not some group of solely non-autistic people, raising a bunch of mysteriously autistic children; we are cut from the same cloth. Indeed I think if you helped autism parents to see the autistic type behaviours they already are intimately familiar with in themselves and their own family as they grew up, I think you’d be doing much good. Rather than treating them like a group that “just doesn’t get autism.”

(3) We know our child like no one else, even when we don’t have the insights of personal autism. We have carried that child since before it was born, and given it every comfort and listened to its every coo from that moment on. We know what gives them blissful joy, and what might leave them screaming and in sensory pain. We may not always know the why, but we know the what and we know the “who:” We know our child intimately, we know their personality, we know them. Who they are. The individual, that is not and never could be wholly defined by any label or diagnosis. To ignore this individualism, this aspect of personality, to downgrade its relevance to a diagnostic term, to ignore the parents deep understanding and knowledge of that individualism and the value of that knowledge, is doing no one any favours… unless you’re trying to argue that your view is the one true autistic viewpoint, in which case it helps to depersonalize other autistic people I guess.

(4) We, as parents, are almost always guided in our decisions by specialists and charities which have been set up to operate in the best interests of autistic people, and they in turn are meant to be guided by studies that provide evidence of what works in the best interests of our children. If we as parents have been mislead, then surely the focus should be on who mislead us and why, not on labelling all parents themselves as the evil-doers. We as parents do not make money or get joy from harming our children, so how about the focus be on who does get profit from such options? If anything, we as parents are also victims of these charlatans (if that is what they are), as they take our money, our limited time, and they harm our children. There is no greater pain as a parent than to see or think you have needlessly harmed your child. Many of us torture ourselves over trying to figure out what the right thing to do is for our kids, the parents I know agonise each day sometimes over figuring out if they have made the right decision, and who pull their child out of any therapy or school that doesn’t meet high expectations for the child’s well-being (just see my previous post for a single personal example).

(5) Raising any child is hard. Raising twins is super hard. Raising a disabled child is… well… also hard. This parenting thing isn’t easy, no matter what child you get. Just how difficult it is is affected by where you live, who you live with, your income, your other children, as well as expectations, previous experience, the list is endless. So when someone points out that raising an autistic child is painfully, terribly difficult, what sense does it make to attack them for speaking a truth? “Shut up, only normal parents are allowed to say how difficult parenting is”? “How dare you express yourself and seek help and understanding as a parent, you just be quiet and listen to my pain instead”? Here’s the deal: Parenting my son when he had severely debilitating self and other injuring extreme autistic traits was hell. For me, and for him. Telling me or others not to say this, is absurd, it doesn’t change the reality, and is in fact likely to make the reality harder, because living in silence brings its own terror and dangers.

I would hope that all that didn’t need to be said, but somewhere along the way these truths, these basic building blocks of parenting and life and genetics, got pushed aside to make way for a politicized message whereby autism parents are treated like barriers to their child’s well-being rather than advocates of the same. I suspect it’s because it’s easy to pick on parents, it’s easy to make us cry and make us shout and make us react colourfully, when someone accuses us of intending to harm our children. It’s so damn easy to push our buttons, and why is that? Because we love our children. Even when we are exhausted and have had enough and need a break, we love them. No other “self-advocate” autistic adult with the types of extremist views I am addressing here, loves my child. They are so full of self-righteous misplaced hate, that I would actually fear to have my child near them (or anyone else who was so ready to attack people they don’t even know). Their hate and anger may exist for an excellent reason, but to direct it at innocent loving parents, is bizarre and cruel. Direct it at the specific specialists, at the relevant charities, at the actual killers, at the high-profile celebrities, but extending such nasty stereotypes to all autism parents is to create fear and anger where it doesn’t belong and shouldn’t exist.

Why can’t we all just get along? Because some people – including some autistic adults – think autism should be completely eradicated. Because some people – including some autistic adults – think all autism parents need to be watched lest they assert their naturally abusive ways. Because some people – including some autistic adults – think autism is mere difference and an adjusted society would address many key concerns. Clearly, autistic adults are not all the same in their views. Autism parents are not all the same in our views. It’s OK that we can’t all get along, it’s OK that we engage in dialogue to understand why. It is not OK to stereotype all people – whether by their autism or the fact they are an autism parent – as all being inclined to think the exact same way as the worst each group has to offer.

Autistic people are not all would-be murderers. And neither are their parents.

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17 Responses to The Non-Murdering Parent

  1. ross says:

    Isn’t the controversial thing about ABA that it isn’t standardised, so that sometimes it’s good and other times abusive?

    • Ross, like any therapy or intervention that has good potential, ABA can be misunderstood and misused in a way that gets close to (and sometimes is) abuse. Taking medications, doing exercises, attending school, all these things can go wrong because of lack of “standardisation” or misapplied standards. But in and of itself, done according to the most recent scientific findings on what works and how to measure meaningful success, ABA is not a bad thing (and can achieve great outcomes for some). The problem comes in when people accuse parents (or whoever) as taking part in abuse just for using ABA. The controversy is not simply over the lack of standardisation, the very term “ABA” brings out strong opinions against it in any of its particular manifestations for some people – they don’t differentiate. I wish they did, there is much to be learnt from how not to do things just as much as how to do things.

  2. nostromoswife says:

    Wow, amazing post. I have been demonised as a parent for exactly the things you describe. Sometimes I feel that as parents, we can’t do anything right – everything we do and say regarding our kids is so incredibly judged. This is true of any parent of course, but even more so when your child has a disability – cripes, you can’t even say that in some forums! Amazingly (and I say that sarcastically), it seems we’re all just trying to do the best for our child/ren.

  3. suburp says:

    Very good post. I was surprised to read the blogpost on the Conner Chronicles today, and I do not agree with it (the call for boycott),being based on toxic facebook comments that obvious got completely out of control.
    These personal attacks based on as you rightly say stereotyping EVERYTHING and EVERYBODY in the name of some erratic cause (either side) is symptomatic for what happens indeed all over the internet when it comes to the – in my eyes – just not existing “autism community”.
    I feel better since I think that it just doesn’t exist. Autism now, thanks to the evolution in diagnostics and awareness, is not a rare condition anymore. It’s not an “epidemic” that’s understood, but it comes in many forms and shades and with many autistic kids and many autistic grown ups come many different lives, experiences and perspectives. As you say, we don’t have to all agree. It would be nice if we would not hurt each other but, let’s face it, its gonna happen.
    Best is to focus on those contacts and that information that brings you further in your life with autism, be it your own or your child’s, as there will always be people who are too caught up in what the see as the right “cause” or the righteous fight…even if they got it all terribly wrong.
    I love your well thought through posts and I believe you have a great attitude towards your son. I can feel your love and your keen curiosity to understand how he feels and how you can help him better. You are certainly one of the most interesting autism parenting bloggers out there and I am glad I found you. XXX Happy New year to you and your loved ones xxx

  4. As an autistic person .. One of the most difficult aspects are extreme levels of emotional contagion…

    Even the thought of personally attacking someone intentionally yields great pain for me…

    Interestingly all the so called higher functioning autistic folks I have met in real life express similar sentiments but oh my goodness it can be so different online…

    Perhaps it is the colder electronic distance that fosters this non-empathic environment .. But I insure I limit my exposure to it as we can become what we feed our minds…

    But anyway this was a very reasonable and well thought out post…

    I’m glad fewer people are subjecting themselves to this type of emotional abuse…

    Particularly on the internet where all it takes is avoiding links that predictably and consistently take one to an area of emotional abuse .. Continuing the vicious cycle of hate that is most unfortunately the over-riding reality of some peoples lives Autistic or not…

  5. kellisfriendmarlowe says:

    Bravo!! Thank you for speaking up about a topic that needs to be heard loud and clear. There is no reason we can’t be respectful with each other even when our views differ. THANK YOU!

  6. kathleen says:

    well done..well said…thanks.

  7. Sunshine says:

    Love this! Agreed!

  8. Pingback: Repeat after me: We are ALL different. | (autism) comics by suburp

  9. Sheogorath says:

    As an Autistic person, I have no problem with ABA in and of itself, but the use of aversives and ‘quiet hands’ really make me steam. The use of other beneficial therapies is also fine with me, but if I hear you boasting that you’re forcing your child to ingest bleach through either their stomach or their colon (MMS ‘therapy’), then you can’t blame me for saying “Thank God” when I hear they’ve been removed by the appropriate authorities.

  10. ally says:

    There are good, mediocre, and bad parents within every pursuasion, geographic local, or focus group.

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