Health Magazine

Autism Advocacy and Points of View

By Gbollard @gbollard

There's been a lot of discussion in the blogsphere recently culmulating in this interesting and insightful post about drawing lines in the sand. 
The ideals expressed were admirable but I could see several places where the author of the post hadn't actually met them (based on things said in comments and earlier posts). Like a true aspie champion of logic, I was about to point them out when I realised two things;
  1. It's not very nice 
  2. My slate isn't exactly clean either

It got me thinking about the bigger picture and inspired me to take a look at advocacy and different points of view. In particular, I was wondering how I personally would go accepting all of these conflicting points of view.
The Indivisible Point of View
We're advocates right? We have to have a point of view. In my case, I'm advocating for my children's right to be accepted as part of normal society. For their right to do things that others do and for their right to live without being judged on their "genetic inheritance".
These are pretty important rights.
It's hard for me to find space in my point of view to accept the views of people who feel that their children have been "stolen by autism" or "corrupted by vaccines". The same goes for people who feel that other people's children simply "need a good spanking".
It's even harder when those points of view actually do damage, whether to a person's self esteem or to their well being. This happens via overly restrictive diets, institutionalisation, chelation, shock therapy and ... even murder.
Seeing and Empathising isn't Necessarily Agreeing
The point is that we simply can't agree with all of these points of view. It's impossible - and yet, until we've walked in another person's shoes, we're not qualified to pass judgment.
We need to accept that these points of view exist and at least try to understand and empathise with them. Yes, even murder - though I'll admit that's a very difficult one.
Note that I'm not saying that you should agree or even accept it as valid. Just accepting the fact that the point of view exists and that people may hold it is enough. It will help you to move on and ignore, advocate for change or provide gentle and supportive correction.
Points of view are one thing - actions are a different thing entirely.
All Points of View are "grey" even extremist ones. 
So, having accepted that a point of view, no matter how wrong, has the right to exist; how do we change it?
First of all, we should ask the question; should we change it?  Is it so wrong that the answer is black and white?
For some points of view, murder being the obvious one, this should be a no brainer. There are still some gray areas though...
Would everyone agree that the mother who deliberately drives her car into the river to kill her autistic children is wrong?
She's obviously unwell and has probably suffered a lot with her children. Her actions are likely the combination of stress with lack of support and extremes of experience.  Even when these things appear premeditated, it's unlikely that any parent with their full wits about them would want to kill their own offspring.
Then there's the question of "the more socially acceptable form of murder"; abortion.
Is the couple who agree to murder a child they've never seen on the basis of a test which could be wrong any less guilty?
Why does society deem this as acceptable and indeed for some conditions such as downs syndrome, accept it as standard practice? Perhaps the issue isn't so black and white after all.
Advocating Against Different Points of View
Now that we've accepted that these different points of view and gray areas exist, is there a need for us, as advocates to change them?
Probably - but like everything, it's a case of "pick your battles".
Case in point, the immunisation debate.
We know that mercury in immunisation shots isn't the cause of autism.  At least, it's not the sole cause.  We also know that autism tends to follow genetic lines and doesn't need a bump on the head or a refridgerator mother.  At the same time there are enough disturbing cases of children who appear neurotypical only to "become" autistic around the time of their immunisation shots.
We know that tests have been carried out to demonstrate that immunisation doesn't affect the majority of children this way but can we really be certain that a certain type of shot doesn't act in a wildly different manner in a certain type of genetic material?
It's not a battle we can win and although I'm in favour of immunisation, I think it's a perfectly good idea for a parent who has one child affected by autism (which coincides with shots) to avoid giving the second child a shot.  It's a risk but it's potentially the lesser of two risks.
A few years ago, had I been asked about this, I probably would have vhemently tried to change your mind. I like to think that I've grown since then - and that I can accept the point of view.  Perhaps by accepting that point of view, I'm keeping my mind open for future discoveries.
Other debates however are less acceptable to me and I feel that I can sometimes make a difference by "nudging".  Ignoring the big issues because we've already discussed murder, one particular pain point for me is the negativity surrounding autism.
I've read a lot of blogs with parents discussing the negative aspects of their children and wives talking about their "husband issues" and wonder what will happen when the person they're talking about eventually reads those writings? How is it going to affect their self esteem.
I can't tell anyone else what to think but I can post helpful (not judgmental) comments. I can offer support and alternatives and I can try to promote a positive view via my blog.  It's the best I can do.  I can offer change but I can't force it.
As they say, "you can lead a horse to water but you can't make it drink".

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