Paths into and out of autism; understanding the love and hate.

I want to propose a different way of thinking about disability – and autism in particular – than what I have encountered so far. I want to challenge the idea that it is helpful to think of all autism in one way, or to think of parents who attack and fight their child’s autism and the condition of autism, as hateful or un-accepting of their children. I’m going to explain this in three parts: Paths into autism, paths out of autism, and the “shoulds” within autism cure.

By Jenny Downing via Flickr

It seems to me that there are three main attitudes to how someone comes into autism, in terms of “fault:” (1) A criminal cause, where someone has acted recklessly or negligently to cause autism; (2) an accident, where it happened by some injury or harm, but there is no meaningful person to blame, and (3) no fault is relevant, autism is just part of a life that some people come to have (at birth or later) or don’t, but no one and no thing is to “blame” in any sense of that term.

If someone believes autism (or a particular incident of autism) is caused by genetics, they may find their attitudes falling into any of these three categories. Something like vaccines as a cause, would fall into any of the three categories too, depending on the malice you may see in vaccine producers. The important point for the analysis I’m engaging in here, is the person’s resultant attitude towards fault or blame: Is there someone who has caused – and should be held responsible for – a disabling change to a person (in this instance, autism)?

So if those are the potential paths into autism, the relevant potential paths out, are binary: (1) It can be cured, and (2) it can’t be cured (both of course complicated by what counts as a “cure” for a condition defined by symptoms). Layer that with the “shoulds”: (1) It should be cured, (2) it shouldn’t be cured. The shoulds are often going to be formed in relation to how severely the individual person is affected: Someone intensely disabled by autism is almost always going to be seen as a “should be cured,” someone who can function adequately most days, is going to attract different attitudes. The “shoulds” and the “coulds” have to be treated separately of course, and you can see how views of medical reality (for example, it can’t be cured), can impact on attitudes towards the shoulds (“it can’t be cured… and therefore I am inclined to believe we must come to see it as something that shouldn’t be cured, as a measure of acceptance and humanity.”)

On this simple mapping, you can see that the the most frustrated and angry people in the autism world, from the parenting perspective in particular, are those who believe autism has a criminal cause, should be cured, and can’t be cured. Those who will be most angry from a self-advocacy point of view against that group of people, will be those who see it as a no-fault cause, that shouldn’t and can’t be cured (or an even angrier group, would be those who believe it can but shouldn’t be “cured” depending on your meaning of cure, for example if you believe any supposed cure is just “passing”).

When people see autism in these different lights, they aren’t really arguing about the same event anymore; they are arguing about “autism,” but because we’re still learning about what actually causes and can help autistic people, there is a huge amount of very-understandable variance in accompanying attitudes towards the condition. If we all agreed on its cause and the state of a cure, most of the arguments would fall into the whether we should or shouldn’t attempt a cure in light of that knowledge, and those attitudes would be informed by what the cure entails amongst other numerous unknowns, as well as the severity of the affected individual, but as least we’d be that much closer to all arguing about the same thing.

That’s just the first part of what I want to say though; I want to make a point about the love parents have for their children and why the above attitude differences are always relevant, and yet get ignored in judging those parents.

If a parent believes autism was criminally thrust upon their child, and can be cured (and therefore, often as natural concurrence, should be cured), then it makes sense that they do not embrace autism or see their child as “one” with autism: The child is seen as hidden by or stolen by autism, not because they hate the child, but because the autism itself is seen as something criminal and removable. To attack the parent simply for hating autism, and to claim this means they hate their child, is to completely ignore their entirely different conception of how autism has arisen and what can be done about it. They may be wrong about autism – for example, it isn’t really caused by a criminal act, it isn’t removable – but that is a different claim than they hate their child. Their actual child – the complete child if you will – was the one taken away, they are just trying to get that child back; they love their child regardless and in all states / conditions, but because they don’t see autism as their child, there is no contradiction in loving the child and hating autism.

In fact, I am yet to meet a single parent who doesn’t love their autistic child, regardless of their views towards autism itself; as parents we are hard-wired to adore our kids no matter what, and that includes fighting for their best interests. It’s just that what is in their “best interests,” very often depends on your views of cause and cure.

There are other reasons someone might hate autism but not the person with autism, particularly around the intensity of the symptoms impact on daily life and living the life the individual wants, ie in the “shoulds” category of attitudes. If the affected individual is relatively happy, self-identified with their autism, and is not a danger to themself and others, then even if autism is seen by them as caused by something bad or curable, it is entirely consistent for them to not seek out any such cure. Again, it’s not just about “autism,” it’s about all these whys and realities supporting those views, that we frequently do not confront or acknowledge in others.

What all this explains for me, is that the autism wars I see every single day are perfectly predictable and understandable. Our communities are particularly volatile, and splinter-off and fight amongst ourselves regularly, as you’d expect when we’re calling different things the same word and all trying to dominate how the public and our peers see it too. It makes sense to me that so often we end up saying “but that’s not even autism,” because we can’t point at a single biological marker or facial feature (or whatever), to at least ground what we’re talking about, let alone know the cause for each individual affected.

Does this mean all disagreement would magically disappear if we could be more precise about the phenomenon and if it could be cured? No, but I do believe the disagreements would be easier to confront and understand. Currently even figuring out what someone believes and why is hard enough, and views of an individual can change one year to the next, moving between “extremes” as knowledge and experiences also change.

Accordingly, my own views and attitudes towards autism have shifted on all these axes: I came to see my son’s autism as more likely to be a result of genetic than post-birth environmental insults (causal); I don’t think autism can be “cured” per se, but I do think interventions can make a significant difference for some children (affecting my views on cure); and my son’s autism symptoms greatly improved (affecting my shoulds, in tandem with my view that autism can’t be “cured” anyway so we need to be more accepting regardless).

If I believed my son’s autism was caused by something someone else did to him maliciously, I’d be joining protest-lines to stop it happening to others and to make the perpetrators pay for the cure (or the finding of a cure). I’d be considered an extremist only by those who didn’t believe those facts about autism, if what I believed was fact, I’d be considered a humanitarian seeking justice for criminal wrongs. At some point people are continuing to hold their views despite science and evidence to the contrary, and at that point anger and frustration from other quarters becomes justified, but it is still important to understand where their attitudes towards autism itself, are coming from, and focus any attacks accordingly. (Which is to say, I don’t think it is fair or accurate to declare these parents as un-accepting hateful parents, which I see far too often.)

I don’t think my analysis is perfect, and I don’t know if it will make sense or help anyone else. But it does help me to understand myself and others better, and that’s why I’m sharing it; maybe it will help someone else too. I intend to return to the analysis in a year or so and see if my views on it – and on autism – have changed. If they discover what caused my son’s autism and how to change it, I’ll let you know. For now, my attitudes quite rightly reflect my understanding of not just autism itself, but of the autism my own son lives with, and as a parent, that makes sense.