Wednesday, March 18, 2015

An Introduction

The other night my wife asked me why I started writing this blog, and I . . . didn't really have a good answer.  I told her, basically, that it was for my own mental health, but that was obviously a lie.  Since when do parents do anything for themselves?  Obviously, this is an ego-driven vanity project that's all about world domination.

Not really.  But it was a good question.  Who the fuck am I and why should you read this blog?  What the hell am I doing here?

I'm a dad.  I'm a lawyer.  I live in DC, and I have two boys.  My son, Flynn, who is almost 5, is autistic.  My younger son is about a year old and appears, so far, to be neurotypical, though it is much too early to know for sure.  Most of my free time is spent doing things with my kids, for my kids, or thinking about my kids.  I spend a lot of my time trying to understand life with autism and researching services that could help Flynn succeed at home and at school.

My reading on autism, more than anything, has motivated me to write.  In my relatively short autism journey, I've seen lots of experts on autism being . . . wrong about autism. Not just wrong, but immensely wrong. "Experts" misleading people for their own gain, selling them on the idea that broccoli will help "cure" autism, or circumcision causes autism.  I've seen and been outraged by the Autism Speaks videos advancing the narrative that autism is a tragedy that they are fighting against (which I will not link, because fuck them, for reasons I discuss below).

There are so many well-meaning parents out there being sent in totally counterproductive directions. 

I can't stop all of that, but I can do one thing: I can be an advocate for my boy and kids like him.  To me, that means always being on their side.  A lot of people who should be advocates are busy doing something else entirely.  I recently re-watched an Autism Speaks fundraising video, and I saw so many pieces of Flynn in each of those kids.  I know I wasn't supposed to (since the parents were all talking about how much of a burden their kids were), but I found them so beautiful.  Then I heard a little neurotypical girl in that video say, "I wish I didn't have a sister with autism."

That little girl pulled my fucking heart right out of my chest.  Hearing those words hurt me more than anything has hurt me in a long time.  Because right then and there, I understood the whole point of that video.  That is what all those parents had been saying, without coming right out and saying it. After it hurt me, it made me so angry.

Because I have two kids, and my kids are equally valuable.

Because my younger son loves his brother more than anything in the world right now, with the possible exception of his mommy, and I intend to help that love endure.

Because if you teach your kid to hate their sibling's autism, you are helping to model prejudice, discrimination, privilege, bullying.  You are the fucking problem.

I will do everything I can to teach both of my kids to accept themselves and each other in their entirety.

What kills me about that little girl's statement, is that she apparently has a much better understanding of autism than the adults who run Autism Speaks. She understands that autism is integral to her sister's identity as a human being, as do the adult autistics who I know and love.  If she did not, she would have said, "I wish my sister didn't have autism" or "I wish my sister could be cured of autism."  Instead, the little girl wished her sister away completely, dehumanized her completely, because she had been taught to hate autism.  And if I know anything about my boy, it's that if you hate his autism, you are hating something quite central to who he is.

I don't hate autism.  I love my boy and his autism.

I want him to know that I will always have his back.

That is why I feel the need to write this blog.  Most parents want to support their kids, but unlike most parents, I have a kid with some extra obstacles.  Most of these obstacles are external to him: the world doesn't fit his needs in the way that it would if he were neurotypical.  I see Flynn struggling so hard to hold himself together every day, and I have come to expect that I will need to fight harder for Flynn in his daily life than most parents do.

I'm happy to do that, but it's not really enough.  The people who speak "for" my son (or for his autism, maybe?  I'm confused) at a national level keep perpetuating an image of him and his peers that devalues, debases, dehumanizes him.

Hopefully, I can offer a (very small) counterbalance to this rhetoric by talking about my reality and Flynn's reality.  My boy is so beautiful and his personality is so full, that he deserves to have his story told accurately.  Hopefully, other people who read this blog can find a piece of their own truth reflected back at them in a way that helps get them through the day.  And maybe writing this will help me get through the day as well.  That way, we all win.

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