Friday, 23 August 2013

Of autism and woo

Back before I was diagnosed with Aspergers, when I knew there was something 'wrong' with me but didn't know what, I encountered several different varieties of pseudoscience, alternativism and general woo.  (And that's coming from someone who reads tea leaves.)

I generally don't have a problem with woo.  If you want the believe in unicorns, or the flying spaghetti monster, or that you're an indigo child, that's your business and I wish you well.  But things get complicated if you make that decision in relation to another person, and even more problematic if that person is a child.

For instance, one of the many ill-fitting labels I was given was Highly Sensitive Person.  It's probably not a bad fit in many ways, and I can understand how that decision was reached, but the problem with this 'diagnosis' was twofold:

It was wrong.  It was an inaccurate diagnosis bestowed by someone who was not (as far as I can remember) a medical practitioner.  My sensory issues and apparent shyness are not because I'm an HSP, but because I'm autistic.  You can't manage or treat something if you don't even know what it is.  So the coping strategies and advice that might work for an HSP won't necessarily work for me... so I end up right back with that endless feeling that there's something inexplicably 'wrong' with me which led to my seeking help in the first place.

I can't remember how long I entertained the HSP notion, but probably not more than a couple of months.  But that was a couple of months wasted tilting at windmills while getting no closer to finding the true root of the very real problems in my life at the time.  Add another few months for something else, and something else, and some other damn thing, and before you know it five years have passed and I'm no closer to the truth.  All this could have been avoided had I been correctly diagnosed earlier.

Were I born a few years later, I might have had a chance at being diagnosed younger.  Then again, I might have just been considered an "indigo child".

A few years later still and I could have been a "crystal child", which is Indigo 2.0 and is often associated with autism the way the original 'indigo' concept is correlated with ADHD.

Giving kids fluffy, meaningless diagnoses does not help anyone.  Just as a 'diagnosis' of HSP-hood didn't help me with the shenanighans Aspergers brought into my life, being called "crystal" or "indigo" isn't going to help an Aspie kid.  Being crystalline will not entitle you to any assistance, support or accommodations.  It's hard enough to get those when you're an actual disabled person with an actual, documented disability, you're not going to get them for some sparkly New Age unicornshit.  

Pretending that a disabled child is an angel or a fairy or the embodiment of a higher power deprives that child of the actual help they deserve.  There are many, many words spoken about the importance of early intervention in autism, and the importance of getting children diagnosed early, so it seems perverse to spend those vital early years deliberately doing something else.  There's no substitute for the help that comes from a proper diagnosis and help from people who didn't get their qualifications from the University of the Astral Plane.

Another problem is that it sets the kid up for failure.  If you've spent your life being told you're a Super Special Snowflake, highly evolved and more enlightened than your fellow man, here to bless the Earth with your magnificence, it must suck pretty hard to find out you're actually very human, possibly disabled, and perhaps not actually very well equipped at all to cope with the realities of life.  I've seen people considered 'gifted and talented' at school because of their high academic achievement crash and burn post-school because they can't make their smarts work for them in the outside world.  That's more or less happened to me, except I wasn't considered G&T in the first place - even at school I couldn't really translate that IQ of 142 into anything of substance.  So setting the expectation of something spectacular from a child, particularly a child with developmental delays, seems cruel to me.

I can understand it being very comforting to think you are, or your child is, a little bit magical.  It's the same reason the Aspie supremacy fringe groups push the master race stuff.  We all want to feel special.  We all want to be acknowledged.  We all want to matter.  And in today's society, where humanity is reduced to numbers and being disabled means your worth as a person is judged by the cost of your care, we don't feel like we matter.

We do.  Everyone matters.   And something drastic needs to change so that society as a whole can grasp that everyone, every single human being, matters equally.  But that can only happen through awareness of the way things are, by working to shape reality into something better.

Not by pretending to be purple.