Saturday, January 21, 2012

Guest Post-To The Parents Of Newly Diagnosed Kids

A friend of mine, pseudonym of Gen Eric, wrote this. It's great & wholly unedited, except for some HTML fixin'. Enjoy.

Your child is probably between the ages of two and five, possibly older (even much older) and possibly (though unlikely) younger. Your child was probably developing just like any typical child until slowly, and almost without explanation, things seemed to take an unusual turn. Maybe they lost speech, or eye contact, or just started doing “unusual” things like stacking or lining objects. Frantically you run for a medical professional, who looks your child over, does some tests, takes you into a room, and tells you a word you’ve been conditioned since childhood to fear.


Your heart sinks. Your dreams of college graduation and grandchildren seemingly fly out the window. This professional probably fills your head with images of someone who will never relate to the world, never get a job, never live independently. Running to the Internet, all you seem to find is tales of financial ruin and broken families. You sink into a deep depression and desperation. How can this child, who was so normal only a month ago, suddenly “vanish” into this “void?” Obviously they just got sick, or trapped, and it’s your job to rescue them.

Now that all that unpleasant business is out of the way, I only have two things to say to you: welcome, and don’t be afraid.

Welcome to a fascinating new adventure with your child. Welcome to learning more about yourself than you ever thought possible. Welcome to a true autistic community that is ready to accept you with open arms.

Don’t be afraid, because autism is nothing to be afraid of. The media has been filling your mind with “autiephobia” since before you can remember. The autism industry is no better, and is actually much worse. They need to keep you afraid so you’ll buy every pill, potion, and behavioral “treatment” they offer, in classic medicine-show style. They need to keep you afraid so you’ll keep donating, keep walking to bring in donations; if you don’t, where will they get their exorbitant salaries? If you give in to the fear, it will consume you and your child. If you stand up to the fear, it will eventually back down.

I call this an adventure, but remember, it’s not an adventure that ends with a normal or “recovered” child. Your child could regain speech, get mainstreamed, succeed in college and work, marry, and have children, or none of those things, or any combination thereof; but no matter what they’ll still be autistic, every bit as autistic as they were the day they were diagnosed. There is no such thing as a “cure,” and there is no normal child who got sick or trapped in some autistic shell. The only thing the “cure” industry does is to give you a stone to make your soup, then sit back and declare victory when your child naturally develops.

It’s true that with behavioral “therapy” (animal training), your child may learn to look, and act, normal, but they won’t be. All they’ll be is an autistic person who is afraid, or ashamed, to be an autistic person, and loaded with a host of mental baggage. They may even harbor a deep resentment towards you, which is the last thing any parent could want. Your child is unique, and will always experience the world as an autistic person, and that’s not a bad thing.

The autism industry tries to paint neurodiversity and autistic self-advocacy as some kind of anti-parent cabal of “high functioning” “aspies,” who instinctively hate you for trying to cure your horribly ill child. The truth is that neurodiversity activists are as unique as autistic people themselves. Most of us are autistic, but not all. Some of us have an autistic child or other family member, some are romantically involved with an autistic person, and some of us got into neurodiversity through an autistic friend. Some of us are labeled “high functioning,” some of us are labeled “low functioning,” and some of us have been cycled through labels like some people cycle through hairstyles. We also have something meaningful and wonderful to offer you.

What neurodiversity offers you as a parent is the hope for a world where your child will be accepted on their own terms. Neurodiversity offers a chance to fight for what your child really needs, access and respect, as an autistic person. The neurodiversity movement values your child for their individual strengths and offers understanding for individual weaknesses. Believe it or not, we’re the ones really fighting for your child. We welcome NT allies and we hope you’ll join us in our fight.

We’re vehemently anti-cure (no autism, no me), but we’re not anti-progress. We know that every autistic person will develop differently, but we all develop. None of us are the same person at thirty that we were at five. Your child won’t be the same person at thirty as they are at five. And why would we, or they, be? Are you?

So welcome, I hope, to the neurodiversity community. I hope reading this has helped you calm your fears and prepare for your upcoming adventure.


Anonymous said...

That is fantastic and amazing and lots of other over-the-top excessively positive adjectives. Thanks for sharing. :)

setrain said...

Wow, I really feel like it would be really helpful if the people it was addressed to saw this post. I'm going to be really linking it to people to try to make it spread. I have a feeling this post could do good things.

Karen V. said...

This is enlightening to me. Being a parent of a 5 year old boy with autism, I'm quite sure I'm exactly the classic parent you are speaking of. I often wonder how much of my son's therapies are helping and how much of his progress is due to his own natural development. I won't stop therapy and hope for him to progress naturally. What if the therapies help and I withheld them? I won't give money to places like Autism Speaks or alternative medicines or GFCF diets which I don't believe in. I will fight for him to be treated well and with respect. I want to do the right things for him. No one knows what's right for someone else but I have to do my best to make it right for my son. Maybe I won't make all the right choices but I will try. Thanks for sharing this.