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.

Autism. (DUNN DUNN DUNN, DUNNNNNNNNNNNNNNNNNN!!!!!!!!!!!!!!!)

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.

Loving Lamposts

"He knows he used to have autism and that makes him sad."

This statement in the documentary Loving Lampposts has been haunting me. It is among the most tragic sentiments I've ever heard. My heart aches for that child-not because he 'had' autism, but because who he is is seen as shameful. His brother was described as "having some of the same thought processes as autistic children...but if anything, he's gifted."

And attitudes like that, attitudes that autism is a horrorshow and we're all doomed to utter incompetence, is why Loving Lammposts gets happy flappies from me.

Why?

This documentary leaps in where angels fear to tread: Todd Drezner interviewed people on all fronts of the autism wars. He talked to Jenny McCarthy. He talked to people selling quack treatments. He talked to cure-oriented parents buying those treatments. He talked to true believers in the vaccine hypothesis. He talked to scientists, experts, and 'experts.' He talked to acceptance-focused parents. And he talked to autistics.

Representing all factions in the often heated discussion about autism is no easy task. How can it be, when one group is convinced another is malignantly misguided, and another is convinced that their opposition wants their kids to fester, and more people are convinced an autistic isn't an autistic if they have an opinion on autism? It's hard enough to wrap your head around the idea-now try presenting all viewpoints in a respectful manner in a fairly short documentary. Yeah, like that's possible.

Except apparently it is, because Loving Lampposts is exactly that. Everyone has their say. Even we have our say, which doesn't happen in the autism world much.

Through interviews, Drezner put human faces to all the views on autism. That's something that gets lost in the heat around autism-that everyone involved is a human. The parents who are frantic to fix their 'broken' kid are human. Those kids? Also human. The parents who are striving not to fix but understand? So human that I wanted to reach out and give some hugs. And their children? And the autistic adults? Three dimensional really real people.

I've been anticipating this documentary since I met the production crew at AutCom in 2007. It was worth the wait-I've been recommending it to everyone who wants to know about the autistic community, the autism communities, and their relationships to each other.

Loving Lampposts is a slice of getting it that exceeded my expectations. A++, would watch again (and again...and again...and again).

Thoughts for Budding Advocates

I've been around advocacy for a while-long enough that I'm baffled that people don't know what neurodiversity is & can't believe that people don't know why r*tarded is offensive, but not so long that I really expect to be 'known'. I've been called a firecracker, a force of nature, & the irresistible force meeting an immovable object-those are my qualifications to write on the matter.

This is directed at those of you who are just finding a passion & something worth speaking out about.

Know that it isn't always easy. Know that it gets harder before it gets easier, & that's not necessarily change, but you getting used to the work.

Know that people tend to hold to their prejudices. They may not take kindly to their behavior being called out. It's up to you whether or not that's a part of the battle you wish to take on-I do, but I'm not going to think less of you if it's not something you're taking on at this time. Do what you can do, y'know?

Know that as you get involved in causes-particularly social justice sorts of causes-you'll pick up on more things as unjust. You can try to save the world, but you'll burn out. We all do what we can, right?

Don't be afraid to get angry. Effective activism and polite activism are mutually exclusive. Harness your anger for what you are trying to accomplish. It's ok to offend people sometimes--they can't be offended if they aren't listening.

If you need to take a break, do it. This isn't always an easy thing, activism. That's why it's best to do what you really mean, what you really believe in.

Other people are fighting your fight too. They're your allies. They may not be your friends, but they are on your side.

Good luck changing the world, even a little.

To the Newly Diagnosed (Especially Teens & Adults)

So you just found out you're autistic. You've been living your life wondering why you have such a hard time with things other people find effortless, why you notice things others do not, why you feel out of step with most of your peers.

And you hear the answer is autism. And the mix of emotions that goes with it is confusing-relief, fear, denial, acceptance, a thousand things.

Welcome, and Congratulations.

Welcome to a community that takes care of its own. Welcome to a community of people who get it. Welcome to a community where being unusual is acceptable, where we know that your difficulties in 'easy' tasks are not a moral failing, where we know that your strengths don't negate those difficulties. We have drama and personality conflicts, as do all communities, but we also have a lot to offer each other.

Congratulations on getting an answer. Congratulations on being an individual. Congratulations on being you-you're probably pretty fantastic.

Some advice, whether you want it or not:

-Be yourself. To hell with anyone who thinks that who you are isn't ok. At the end of the day, you are the one who has to live with you. Trying to put up a normal facade day after day is unsustainable.

-Take care of yourself. It's ok to excuse yourself from situations that are overwhelming or painfully difficult. It's you who has to live in your skin and your brain, not anyone who tries to give you crap for it.

-Don't let anyone make you think you are broken. You aren't. Different, yes, but faulty? Nope. Having difficulties isn't the same as being fundamentally broken.

-As a corollary, don't go chasing every so-called cure that comes out. They are usually scientifically bassackwards, usually expensive, and often harmful to your vital organs.

-DO get any therapy that may be helpful. Anxiety is crappy. Sensory issues are crappy. Insomnia is crappy.

-If you have health issues, take care of them, but don't expect that to cure your autism. It won't, but it's a lot easier to function in this alien world if you aren't also sick.

-Seek out our kind. There's nothing like being in a place where everyone speaks the same dialect. It's beautiful. You need to experience the ease of relating to people who grok.

-Non autistic people sometimes get it, too. They're good people to get to know.

-Accept yourself as you are. Strive to be the best you that you can be. Always.

With open arms,

Neurodivergent K.