The Family Room

Autism is a color

There is something about autism that taps into the most primal beliefs we have about the nature of consciousness, of intelligence, of humanity. There's a fairytale quality to the way the media portray autism, and I mean this in two diametrically opposite ways: both the happy/quirky/technicolor and the clammy/dread-inducing/Grimm's tales sense of the word.

Depending on who you believe, autism is an epidemic, a scourge, a pathology, a condition, a series of genetic variations, a difference, an asset, or all or none of these things.  There are as many autisms as there are people with autism. There are as many autisms as there are colors. There are as many interpretations of it as there are interpretations of the Constitution, of politics, of religion.

All these variables make people nuts.

I started this blog nearly three years ago because I wanted to reach out to families who, like us, started their journey in a cold sweat of fear, despair and confusion. I wanted to share what we've learned, and offer comfort and hope when I had the presence of mind to write it down.  I wanted to tell you about the weird, the painful, the hilarious and the joyous, and find out if anybody else out there was on the same wavelength.  I've met some of my best friends this way (you can meet a lot of them on my blogroll).

I know that our story will only resonate for some families, because all kids with autism are different. But even though all kids with autism are different, they are also sometimes the same: when they melt down spectacularly in public, when they struggle with something that "typical" kids understand innately, when they fight to regulate their senses, when they do something socially awkward, when they communicate--with a word, a smile, a spontaneous hug--their joy in the world.

I am not a sap about this. It's difficult. It's exhausting. It's frightening sometimes. It's bloody expensive. It's tough on my marriage, my family, my friends and probably my health.  

But I am happy. My son and husband are happy.  

So I reject you, Autism Speaks, for mongering fear and hatred with this hideous new video. For forgetting that people with autism deserve respect, and for demonizing them even as you seek to raise funds to support and treat them.

It's manipulative, hypocritical, counterproductive, cynical and, frankly, beneath you.

I'll tell you what. I don't know what life holds for Isaac, or for any of my friends' children. I want all the same things things everyone wants, and I won't stop working for it.

But what I demand for him, and for kids and adults on the spectrum, is respect. Yes, we need to raise money for treatment, understanding, respite care, research: all of those things.

But respect is free. So why is it so hard?

I'm baaack!

It's been a long summer, and an all-consuming one, but I'm back now. I'll save you the lengthy explanation: it was a combination of real life, of wanting just to be rather than say, and of wanting to spend every spare minute (of which there were precious few) with my boys. 

Here's what we did this summer:

• Isaac turned six, lost his first tooth and learned how to do a "forward roll" in gymnastics
• I learned how to make fried chicken 
• J. started on a long-contemplated book project

Oh and there was reading, and IEPs, and trips to the beach, and seeing old and new friends, and life in its many tiny textures.

I've missed you all.