Wednesday, November 16, 2011

Autism Advocacy and Points of View


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 judgement.

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 grey 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 grey 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".


9 comments:

Patty O. said...

I think it's sad that there is so much division among parents of kids with autism. Sure, we all have our opinions, and we have a right to them, but I would love it if people were more prone to supporting one another than attacking.

But, we are all human, and we all make mistakes. Still, this is why I avoid many of these topics online.

C... said...

Some people have completely anonymous blogs though so they just want an outlet to say whatever without consequence whereas many of us want to connect with someone who can be supportive or at least give us some objective commentary.

Me said...

HI Gavin,
you may be interested in reading my blog post. Which I posted a couple of days before Emily wrote hers.
http://sharon-theawfultruth.blogspot.com/2011/11/finding-middle-road.html

best regards from another Aussie blogger

Gavin Bollard said...

Wow Sharon! That is such a profoundly insightful article.

Pushing our own point of view is so easy and listening to others is so hard.

There are amazing and interesting voices in each "camp" if only we could all listen without prejudice long enough to hear their message.

Julian Frost said...

W.R.T. your comments on vaccination on autism, I have to take issue. This question has been investigated thoroughly. Andrew Wakefield (who posited the connection) has been exposed as a fraud who cooked his data and his paper on "autistic enterocolitis" has been retracted. Multiple studies, including one from Denmark that looked at over half a million children, found no difference in the autism rates of the vaccinated, undervaccinated and nonvaccinated. There is no link between vaccination and autism.
It would not be wise for a child with an older autistic sibling to not be vaccinated. Such a move would put the younger sibling at risk of some very nasty diseases, and as pointed out above, would not prevent autism.
The anti-vaxxers have tried to use the false link between the MMR Vaccine and autism to attack vaccination. Children are now dying from vaccine preventable diseases, and a backlash is starting against them. I'm worried that autistic people may be caught up in the backlash.

Gavin Bollard said...

Julian,

An excellent demonstration.

I was aware of this and last year, my answer would be precisely the same as yours.

I've since talked to some people who provided a lot of good evidence to suggest that their child's symptoms started immediately following an immunization.

Now, personally I don't think that this is "autism" in the classic sense but that it's potentially "autism-like" behavior.

It may or may not be related to the immunization but if you have a parent who is "certain" about the origin of their child's condition, why would they risk a second child.

It might not be the contents of the shot - it might be the reaction of a certain type of body chemistry.

You can't rule these things out so the question becomes;

Which risk will a parent take?

A shot that they feel has certainly affected similar genetics - or - the possibility that their child may come in contact with a fatal disease that the "herd" is already immune to?

It doesn't matter what we say as advocates, the choice for affected parents seems pretty clear to me.

Sharon daVanport said...

Hi Gavin,

I appreciate your reasoning points. This is something both parents and self advocates will need to be be mindful of for sure. Did you follow the series from the Thinking Persons Guide to Autism when they hosted the Self Advocate & Parent Dialogues? I thought it helped to serve as an opener to the conversation where there had been a history of division in our community between parents and self advocates. It was an interesting series.

(btw: attendees at AANE Conference appreciated the comments of yours I used in the cyberbullying workshop; I'll email you the details; thank you again for contributing; speak soon.)

Wonder Woman said...

I just stumbled upon your blog earlier and I wanted to tell you thank you for sharing. I have had a rough last couple of weeks with meltdowns in my almost 13 year old aspie son. Just a quick web search led me to a post of yours, and I am sure that I will be diving in deeper over the next few weeks. I always appreciate when people are so willing to be open and share information. You put out there something that happened to find me at the perfect time!

Marita said...

Fantastic thought provoking post.

I get so frustrated by people who can't see my point of view, yet I have to accept that their point of view (however incorrect I consider it), may well be coming from a very valid place.

Just as I hope others will not judge me, I need to not judge them.