Autism Advocacy From Each Side

A few weeks ago, in a FaceBook ASD support group, I was kicked out for daring to mention the divide between the NeuroTypical parents of ASD kids, and adult advocates with ASD.  Just kicked out.  No discussion.  Just kicked.

It hurt.  A bit.  Not too much.  I don’t really like clique groups anyway, and they were very much a clique group.  Despite their protests to the contrary.

They wanted to believe there was no divide.  Or that talking about it would make it worse.  They are wrong on both counts.

Today I just read a blog from an NT mother about her ASD child and NT child.  I noticed that despite her protests to the contrary, her wording told a story of a mother who saw her ASD child as being “less than” her NT child.  Statements about her NT child like “He’s learning how to play with his brother, who sometimes isn’t the easiest kid to play with”, and “He’s learning how to lead.”

All kids can be hard to play with.  And why should the NT kid be the only one to lead?  (And being the older kid is no excuse either).

She also brings up “The Autism Divide” (my slogan for the controversy between NT parents and ASD adult advocates).  She tries to do the right thing, I guess, and accept her child’s Autism.  She obviously has a long way to go, and she obviously isn’t about to apologise for that.  She is not hardcore “ASD mum warrior”, though she is clearly on that side of the line.  Mostly though, I think she just wants her feelings validated.

She wants people to stop telling her to be happy about a situation she is not happy with.

And THAT is something I can understand.

I’m getting a little tired of all this back and forthing and fighting among ourselves too.  So from someone caught smack bang in the middle – someone who has diagnosed Autism (Aspergers), who is married to a man with Autism, and who has two children with Autism – here it is.

Both groups are right.  And the extremists in both groups scare me.

Watching your child “suffer” Autism is hard.  I can remember not sleeping until 11:00 every night as a child.  I can remember lying in bed, bored, trying to keep my brain amused to I didn’t kill myself out of frustration.  I can remember the “pain” of it.  As a parent, watching my child go through the same thing – there is no comparison.  The pain you feel as a parent is much worse than the pain you remember feeling as a child.  For starters, I was a kid 30 years ago.  But I was a parent last night.  Secondly, as someone going through it, I was focused on getting through it.  As a parent though, not only do I have to get through it too (hey, if my kid isn’t sleeping until 11:00, neither am I!!!), but I am responsible for fixing it.  I am responsible for making it better.  I have guilt that it’s not fixed and it’s not getting better.  I have worries that it will not be fixed any time soon and fears that it will never get better.

In short, things are much more complicated when you are a parent.  It is just as OK for a parent of an ASD kid to say “today just sucked because of Autism” as it is for a parent of an NT kid to say “today just sucked because it’s raining”.  And sometimes being a parent sucks, no matter what kind of kid you have.  And parents find solace in realising they are not alone in their struggles.  They shouldn’t have to pretend all is light and fluffy just so they don’t offend your blessed cotton socks.

I think we can all agree that having a six year old in a nappy isn’t fun, and when they are in a nappy due to Autism, then yeah, Autism sucks.

As someone with ASD, I am also sick of NT parents telling me I am not like their child.  Of course I’m not.  I’m 36 years old for a start.  I am no longer six.  I am no longer smearing my poo on the walls, but that does not mean I never did.  I know I did, because my grandmother delights in telling the story at dinner parties.  I can, for the most part, speak perfectly well, but that does not mean I never needed speech therapy in the past, or still do not have bad days today.  I may have a high IQ, but IQ has nothing to do with Autism.  A child with a low IQ does not have “more” Autism, even if they do have more challenges overall.

So stop invalidating MY experiences.  MY knowledge.  I have plenty of both and if you shut up and listened, you might learn something.

I am helping fight the good fight to get society to accept people with Autism they way that they are.  Overall, I would rather have Autism than not have it.  It makes me interesting.  It makes me quirky.  It makes me me.  And I like being me.  I like having black and white rules, and I like not being worried about clothes and makeup (much lol).  I even like having my type of OCD.  It helps my brain, rather than hinders it.  I’m blessed in many ways.  I’m talented in many ways.  All due to Autism.

Yet even I have days I wished my kids didn’t have Autism.  Parenting a child with Autism is 100 times harder than parenting an NT child.  My working background and qualifications are in early childhood, so I say that from a professional perspective as well as a personal one.  If you think there is ever going to be a day when parents of ASD kids rise up and say “thank goodness my kid has Autism”, you’re dreaming.  Just as you’re dreaming if you believe that adults with Autism have nothing to contribute to the discussion because they are adults.

There is a middle ground.  I urge you all to try and start finding it.  Blogs like the one I’ve mentioned still aren’t quite there yet, but they’re getting close to the middle we need to see in order to start being effective advocates as a whole community.  If we keep trying to advocate for different things, we are never going to achieve what we otherwise could.

Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

Posted in Autism, Disability, Politics
One comment on “Autism Advocacy From Each Side
  1. Well said. What works for one family with Autism doesn’t work for every family with Autism. I just got to the point that I block blogs where the people are too extreme one way or the other. There is no one size fits all way to make it all work.

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Pissed off since 1995. Mad as a hatter since way before that.

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