Friday, March 29, 2013

Colin Meloy and Positive Autism Parent Role Modeling

The autism parenting community could use more role models like singer, musician, and writer Colin Meloy. We spoke with him earlier this month about the awesomeness of his son Hank, why it's so damaging when parents publicly promote negative messages about autism and autistic people, and why autism parents should put their energies into better autism accommodations and resources instead of "fighting" autism.

Colin and Hank
TPGA: Did you have autism in your life prior to becoming an autism parent?

Meloy: No. There wasn't any, or very little --  not in my immediate family. So my son Hank's diagnosis was blindsiding to a certain degree. But I had also never known autism to be necessarily negative.

When I recall my B.A. (Before Autism) era, I hung around with artists and musicians in the Pacific Northwest, fellow introverts and weirdos, and there were certain artistic temperaments that were often socially awkward, kind of obtuse and mysterious. So artful and "indie" that they had no filter.

Celebrating being quirky?

Yeah, to a certain degree. Obviously it's a very different experience becoming a parent of a kid on the autism spectrum. But just being a musician, I was already accustomed to being around socially awkward people.

When I first started educating myself about autism, I learned that it was supposedly more in the engineering and scientific communities -- but I think there's something to be said for the art community as well. Both my wife Carson and I are a little bit introverted in our ways, and I think it's one of the ways we are able to connect with Hank and understand where he's coming from. Because while neither of us are really on the spectrum, we both have our moments of real shyness and some difficulty in social situations, which I think is common among creative people.

Is performing in front of large crowds then a different kind of interaction for you, different than interpersonal interactions?

Yeah, I think there's a switch there. I kind of move in and out of being able to spend a considerable amount of time with other human beings. It depends. To a certain degree, becoming more of a public figure and being on stage a lot more has led me to a more private life. And I don't know if any of my social awkwardness is because of that. But it doesn't affect me on stage, I don't have stage fright -- there's something that takes over when I get on stage, and that's mysterious to me. Sometimes it's easier for me to address a crowd of 1,000 people than a room of ten. That kind of makes sense to me.

Can you talk about how you felt around the time of your son Hank's autism spectrum diagnosis? How you felt, your reactions?

It's the sort of thing that once you start noticing or someone suggests a possible diagnosis, you start seeing that diagnosis everywhere -- and that's also because at the time it was everywhere. You couldn't avoid it, which is sort of a great thing -- but then there's also the potential for a lot of negative stuff to filter in there as well.

He wasn't meeting milestones or doing so much later than other kids. Our pediatrician at the time said, "well, he's waiting to master these things before he's really doing them." Things like walking and talking. But she also suggested we go see a speech path[ologist], and figure out what the language delay was all about. After a few months of work, she decided we should probably put Hank through the autism screening. So we got the diagnosis when he was about two and a half.

I feel like there was so much leading up to that! The initial suggestion, then going to see the speech path, then the autism screening -- that buffered it a little bit and we were able to process it, so by the time we were even going into the screening, I kind of knew. It just didn't seem like there would necessarily be any other outcome.

Then you really have to come to terms with yourself, and your child, and all the expectations that you had for your kid -- and then you realize how kind of ridiculous that all is, and how much of it is about you, and how much of it should really be about your kid. The idea of 'horizontal identity' makes so much sense to me. But it's a major transition that has to happen in your head, as you step back and have to come to grips with certain things.

Can you talk a bit about the accommodations that you see society making -- or not making -- for kids like Hank? Specifically in areas like schools?

My experience as the parent of a kid on the spectrum is that there are many challenges. Challenges that at times seem just impossible. But I don't think that they are necessarily that different from challenges other parents face. But they sometimes require different and more creative solutions.

As I look back and catalog all the meltdowns and intractability, and social issues with our friends who had kids of the same age -- I think the biggest challenges have actually been in dealing with the structures that are supposed to be in place to accommodate these kids.

Our biggest battles, honestly, were insurance battles earlier on, trying to get coverage for these basic therapies recommended by his pediatrician and the people at the clinic who had diagnosed Hank and who were working with him. Just to get those therapies covered, we had to go all the way to the head of our insurance company, and provide evidence that these things were actually making a difference.

And now that Hank's a first grader, the next battle is trying to figure out how the Portland Public Schools will accommodate him, and recognizing that the special ed system in is fairly broken. You are extremely limited in your choices -- there's a "one size fits all" with special ed in this district, and if any kid doesn't fit that mode, it's a kid on the autism spectrum because they are so vastly different -- it's impossible to fit them into a system that is supposed to fit all comers. That's been one of the hardest things to navigate.

Portland is a pretty forward-thinking and progressive place in most areas, but it's also totally broke, and the system is really underfunded, and it has a pretty big population to serve, and it hasn't done a really great job meeting those needs. I think it's just really strapped. There are other, smaller towns like Corvallis, and some of the outlying suburbs that have more resources, but the metropolitan area is just really struggling. Portland public schools are not in great shape.

You go to these classrooms, and you can see ways for them to be improved. Hank was in a self-contained classroom for his kindergarten year, and every time he walked in there, just to get him to do the basic things like take his coat off and put his lunch in his cubby were impossible because there was so much stuff, there was so much clutter. It was not only trying to accommodate kindergarteners but first and second graders, because it was the Resource Room. It was also the one self-contained classroom in the region -- there's only three of them that would service his IEP in Portland Public Schools, and we had to drive 30 minutes, or would require an hour-long bus ride. And for a city the size of Portland, that just seemed ridiculous.

So the class had all these kids -- not just kids on the autism spectrum but with learning disabilities and behavioral issues -- and what worked for some kids didn't work for others. It wasn't conducive to Hank's learning -- it was impossible to get him to focus on anything. We had this idea that the perfect class for autistic kids would look more like a yoga studio -- remove everything. But there's just no room and no money for anyone to come in and creatively re-imagine what that classroom could look like, particularly for kids on the autism spectrum.

There are a few private programs in the area, and some look dreamy, are essentially academies for kids on the autism spectrum -- and I'm sure the tuition is absurd -- and then you go on the website and find out that the founders met at a Defeat Autism Now conference.

Or another academy will do a lot of ABA and good work, but on their blog, they'll have not only these intense anti-vaccine screeds, but also about anti-fluoridation. What does fluoridation have to do with the work they're doing? So do we count these places out because we don't agree with their philosophies?

Do you think part of those philosophies have to do with being in Portland?

Portland is mystifying. You have all these perfectly sane, educated, intelligent adults just making really weird decisions.

Tell us about the awesomeness of your son Hank.

Happy to do that! Everyone's kid is different, and for some people it's not always easy to see the awesomeness of your kid -- it's not as clear, as revealed. And I have sympathy for that. But I would say that, from the beginning, we've really tried to gird ourselves to open ourselves up to Hank and who he is, despite his challenges and despite the fact that his way of existing in the world was inevitably going to be different from our own.

As far as I can tell, autism is as much a part of Hank's true identity as his intellect, and his wit. I really can't see any place where that could be separated. I read about people hating autism or wanting to defeat autism or cure autism, but I think that, if you were to go back before [Hank's] diagnosis and remove what made him autistic, we would certainly have a different experience, but so would we if you waved that same magic wand and removed any other part of him. 

We did get a chance to see the miraculousness of the autistic brain: he started reading before he was three. When we were doing all these therapies for speech, we started realizing that he was reading words. One day when he was just shy of his third birthday, I remember holding up a newspaper and pointing to the word 'moon,' and he said "moon!" Same with the word 'school.' And we said, "Well, that can't be, that can't be true." But it was.

His actual medical diagnosis is PDD-NOS, which puts him on the autism spectrum. He also has the TAG [Talented and Gifted] designation from Portland Public Schools, which he got in kindergarten because he scored off the charts -- by that time he was reading novels and encyclopedias and things.

He just loves books; that was actually one of the first signs that he might be autistic. Carson was reading about someone whose kid had been recently diagnosed, and instead of playing with toys would just sit by the bookshelf and look at books all day. And she looked down from her laptop, and there was Hank pulling all the books off of our bookshelf. He would spend hours just looking at books. Even though he's gone in and out of astronomy and trains and mythology and geology, and we're always waiting for him to become really fixed on one big particular thing, but he hasn't -- his fixation has always been books.

He has this incredible sense of humor that arose while reading joke books. And we figured out early on that he loves word play and puns -- he's working on his delivery, he's getting better. We were steered by therapists who said, "toy with that stuff, it's a good way of coaxing language out of kids who might be reluctant."

I also think he has an incredible perspective on the world. He sees it very differently than the rest of us, and is kind of a card in that way. I think he is deeply, deeply weird, but we are into weirdness, are open to it, and find it charming and smart.

I think he's just been this amazing light in our life.

Does Hank enjoy your and Carson's Wildwood books?

Yeah, he loves them. He always goes to the battle scenes because he loves calamity. And he's become more involved in them. I read the pages that I write to him every night, and before he would passively listen, but now he will tell me, "Oh, that word doesn't work" and then we have an opportunity to think about synonyms and a better way for a certain sentence to be written. And he's actually been suggesting some good ideas, and I've been incorporating them, and he's super-delighted when that happens.

What are your thoughts on the way autism is portrayed by the media?

You see a lot of press about autism, and some of it's good, and some of it's bad. And I would say that those pieces that fixate on how difficult it is for parents of kids on the autism spectrum -- I can see why there is this desire to vent, a desire to get your story out -- but I wish people would consider what kind of potential harm that can cause. Not only to the autism community, but maybe to a parent who is just receiving a diagnosis -- the last thing you need is to be scared, or to be terrified, or to be told that "this parent's life is a living hell." That's making the process that much more difficult.

Anything that's going to inspire resentment towards your kid, that's the last thing you need. You need to be focused on the love, and the things you need to be doing as a parent, and your commitment to your kid.

On top of that you have kids like my kid -- who can read and is verbal -- but is clearly very autistic. There is no doubt Hank has autism, and severe challenges that will likely be with him throughout his life -- and the last thing we'd want him to see or hear or read is how this thing that is a part of him, part of his identity supposedly makes peoples' lives a living hell and tears apart families.

It's just awful, and I wish these people would consider that -- how a kid on the autism spectrum hearing that stuff would react, and how that would make him feel about himself, in a world where he's going to have a hard time having people accept him anyway.

This is not to say that parents can't bitch and moan and say "this is f***ing impossible" -- because sometimes it is, because that's restrictive. Scream it to the heavens! This is hard! But don't write about it on your blog. And be careful about the context you're writing this stuff in.

People have an incredible interest and desire to help, and it's just being misdirected -- we could be focusing on better classrooms for kids on the spectrum, we could be focusing on better services for transitioning adults on the spectrum.

The more you create fear mongering and resentment towards the autism community, the less good you're doing.