Holier than thou autism parents; the “victim” group tag comes from both directions

There has been a lot of autism blogging heat on Jenny McCarthy lately, for a rather offensive, inaccurate, and damaging stereotype she placed on an entire (and very large) grouping of autism parents. Jenny’s idea is that the parents of autistic children who refuse to try every new-fangled miracle-cure that comes their way, have chosen to accept a victim role that gets them attention and pity, since they are in turn actively choosing to not help their child. That the parents who do try highly controversial cures, are the better mothers – the “warriors” – who refuse to lie-down and accept the autistic fate of their child. (This blog post at “Yeah. Good Times” does a fair job of conveying what Jenny says, and is a typically outraged response to Jenny).

As much as I agree that Jenny is cruelly (and ignorantly) labeling a sizeable group of autism parents as taking and enjoying a victim role, I want to point out that she’s not the only one using this lazy and under-handed tactic for attacking those who disagree with them; that some people in the very group she is attacking, also seem to take undue and self-righteous pleasure in labeling a large group of other autism mothers as accepting and wallowing in a victim role.

There have been numerous studies documenting the excessively high stress levels of parents looking after autistic children (at least one such study claimed that our stress levels are even higher than parents of terminally ill children!). There are lots of reasons for such high stress levels, most of which are objective stressors, such as severe sleep loss over many years (or decades), and being in physical danger at the hands of a child who has frequent and violent out-bursts. It is also quite usual for us to lack a support system or any down-time; we can often be on call at all hours to meet the endless and repetitive needs of a child who is prone to very high levels of anxiety if we don’t do exactly the right thing at exactly the right time. Months and years spent trying to teach basic skills that other children pick up seemingly effortlessly years in advance, might never be rewarded with results.

There are also subjective stressors of course, such as personal attitudes towards autism in itself. But even someone of the sunniest and most positive of dispositions, will find their stress levels through the roof when they face the sort of objective stressors I listed above.

This isn’t a pretty picture of what autism can be like, but reality isn’t always pretty, and sometimes you have to look at the ugly parts of life in order to get help to where it is most needed, and in order to understand the needs in the first place. Not all autism is doom-and-gloom, but for many parents, coping with an autistic child really is this bad (or worse, particularly when comorbid conditions make the child’s autism even more challenging).

But when autism parents speak out about the stressors, or speak out about what it’s like to live with the worst autism has to offer, they are very often and promptly labeled as playing the victim role. Not by people like Jenny, but by the sorts of people Jenny attacks: Those who see autism as an inherent part of the person, which can’t – and shouldn’t – be cured. Those who prefer to use tried and tested therapies, and will avoid therapies which are seen as efforts to change the child (instead of changing the response of the rest of the world to the child).

The stress levels of parents who struggle, get dismissed as “attitude problems.” The idea is that stressed out parents just need to be more accepting of their child and the child’s autism, and that would take the stress away. That there is nothing objectively stressful about raising autistic children, it’s just parents playing into a victim role. That much of the supposed stress involved with raising our children is also a result of others’ attitudes towards our children; that if everyone just learned to love and accept autistic people, we’d all be fine. It’s all in everyone’s heads you see; autism isn’t really a stressful and upsetting condition, it’s just bad attitudes of everyone who doesn’t agree with those who aren’t experiencing stress.

Sound familiar? Denying other people’s experiences, points of views, realities, knowledge, arguments, by simply painting them all as having a personal attitude problem. It’s what Jenny did that got everyone so mad, and it’s what these people do too. It’s lazy, it’s intellectually dishonest, and ironically enough, it is victimizing too: Taking a group of highly vulnerable people, and dismissing them and their experiences, with a personal attack.

From my personal experience, dealing with a low functioning autistic child is so immensely stressful that it can make you physically sick, as your body struggles with the daily strain, and your own basic daily needs necessarily get side-lined. It can make you feel like you’re surviving sometimes just minute by minute until the day ends. As my son moved up the functioning scale – learnt to use words, to manage his anxiety better, self-toileting, etc – my stress levels decreased in parallel. (By the way, If you don’t like my reference to low and high functioning, and you think all such references are redundant and meaningless, I point you in the direction of my previous post on this point.)

I’m not saying that having a low functioning child is always going to be more stressful than a high functioning one, I think there is some truth in that but it’s too simplistic too, since behavioural problems and anxiety levels (for example) can vary so much and independently of what a child is capable of doing for themselves. But I have noticed an unmistakable trend at least (again, just personal observations here) that those with comparatively independent autistic children, tend to be the ones criticizing the “attitudes” of those with highly dependent autistic children.

I want to make a point at this stage, which I think is important and very misunderstood. When I (and others) say that raising an autistic child is very difficult, it does not mean we don’t love our child or that our child will think we didn’t love them when they read those “tormented” words of ours when they become adults. Anymore than I would be devastated to know that looking after me as a newborn / teenager (or whatever), was a real challenge and exhaustion for my own parents. As children we all pose serious challenges to our parents’ mental and physical health at times – and often that’s even more true of raising autistic children – but knowing we are hard for our parents to raise, does not equate with thinking we were unloved or unwanted. That is a separate claim, and should always be understood to be a separate claim.

Just because something is hard and expensive and tiring, does not mean the goal – the child’s happiness and wellbeing in this case – is therefore automatically declared something that is unwanted or not worth doing. Giving birth was horrendous for me and my life was in real danger after the birth of my first-born (I was taken straight to surgery), that doesn’t mean I wish I’d never done it. So I don’t want to be reading any comments below, saying my harsh words about what it was like to raise my son, means I didn’t or don’t love him. Or, of course, that I am playing some sort of “victim” card. Sharing my reality – what I went through and how hard it was – is not asking for pity or any such thing. My primary hope is quite simply, to be understood, for people to know and understand the challenges I – and other autism parents – faced and face on a daily basis. Many good things then flow from that too, such as not feeling so alone, a better public appreciation of what services we need and why, and the vain hope that maybe policy makers will hear us and actually make our (and our children’s) lives, better.

Declaring everyone who disagrees with you – who experienced a different reality than you – as having an attitude problem (or more specifically, as seeking pity since they supposedly like to be seen as a victim), is something that isn’t just coming from the Jennys of this autism world. If we can understand why what she said was stupid and dishonest, I would hope we can see the same in claims from other people who we don’t find so objectionable at the out-set. It’s easy to target Jenny – and yes she deserves targeting – but how about others also lay off declaring other autism parents as lesser, just because they’ve had a different experience of autism. Autism is a diverse condition – a spectrum – and in turn the experiences of it are also diverse. There is no one group of people with the monopoly on autism reality, when it comes to raising these amazing but also very challenging children.

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9 Responses to Holier than thou autism parents; the “victim” group tag comes from both directions

  1. Angela says:

    Good thoughtful blog post. I have often thought as a “community” our greatest weakness is our fragmentation. Imagine how powerful, as a lobby group, parents could be if they could only get along! A book that I HIGHLY recommend is “Changed by a Child”-Barbara Gill. Every page is a new short comment (a blog before they had blogs!)-just great to “dip in and out of” A quote from her book entitled “JUDGING.”
    Nevertheless, when parents’ choices are different from our own, we may feel threatened, and instead of extending empathy and support, we render judgement. Perhaps, someone else’s choice reawakens our doubts about our own decision, or inspires guilty feelings because we think we “should” be doing what they are doing. Conversely we may be so convinced of the rightness of what we are doing that a different choice is incomprehensible to us. We can release ourselves from judging ourselves and other people. Their choices are not statements about us, but only reflections of their own needs at a particular time. While we can learn from other people’s experiences, our only responsibility is to make and live our own choices.
    Hang in there fellow “journeyers!”xxx

  2. mrsstone says:

    As the parent of a child at the “higher functioning’ end of the spectrum, I get this post. The emotional and physiological impacts on me of raising Harri still affect my day to day functioning. The stress of caring for a baby that cried all day, and rarely slept at night for the first year of his life pushed me to the edge of sanity. I still can’t write or talk about it without tears welling up. It is a post traumatic syndrome I now live with as a consequence of surviving those very long, bleak days. As Harri gets older and becomes more manageable life starts to look brighter again. It becomes easier to embrace the positive and see the joy in having an autistic child.

    This is why I feel so strongly that we must create spaces for parents to share their struggles.

    To invalidate people who are reaching out for support, to be heard and to be acknowledged for managing despite how hard life is right now is just incredibly unfair and can have serious consequences.

    • dixieredmond says:

      Not sure where those places are, Sharon….it’s originally why I started searching for autism related sites again after a long hiatus.

      • mrsstone says:

        That makes me sad dixieredmond, but yes it can be hard to find. I created a Facebook group for parents who choose ABA for their children. That has become a refuge for the o 100 odd members we now have. They share much more than just their ABA ideas and resources now as it is a closed group so they can vent about other issues in private. Feel feel to join dixieredmond. I can pm you the details 🙂

  3. dixieredmond says:

    You wrote something true here. I’m so glad that there are people writing what I think. I find it in various places – parents of people with autism, autistics themselves, educators. Some places are hard for me to go. I am in a searching mode again for ways to help my son in the next big change. That searching reminds me of early days and has triggered some anxiety for me – the whole looking for a solution that seems good and not harmful.

    Also, online, I don’t talk a lot about the changes I made in my life to accommodate my son for reasons you stated. But it does feel that I am leaving a major portion of my own story out.

  4. ettinacat says:

    If the way you talk about your autistic child being difficult is similar to how most parents talk about newborns being difficult, then you’re *not* the kind of parent that those claims are intended for. The parents I see as playing the victim are the ones who claim that their family is being held hostage by autism, that autism has destroyed their family, etc. And on the rare occasions that I’ve seen parents of NT kids who are similarly negative, they get accused of playing the victim by most people – not just by a small group of people with an unusual viewpoint.

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