Ari Ne’eman: Let me start the recording. You can talk a little bit about how part of autism acceptance is addressing barriers in public schools and dealing with opening up the general education class, if you would be comfortable relating that to your family’s experience. That would be great.
Colin Meloy: I totally am.
Ari: So what we’re going to do is we’re going to go through some questions, we can do kind of a back-and-forth, and it shouldn’t take more than a half hour or so. Are you ready?
Others: Yeah. Sure.
Ari: I think just for a starting point, in the middle of the tour, obviously your family and personal experiences are of relevance in the context to your art. Would you talk a little bit about the inspiration that you draw that goes into your music?
Colin: Just where it all comes from? It comes a lot of different places. Books I read, movies I see, music I listen to… just general weird impressions about the world, even down to the cadences of words and sentences, and then sometimes songs come from just a chord progression that just has kind of a tone or mood to it that then suggests some some sort of broader world that we populate for this brief moment for three and a half minutes.
Ari: That’s beautiful. Talk to me a little bit about your connection with the autism world. I know you’ve spoken about this in the past, but just so we can present it in a linear way.
Colin: I was first introduced to autism from a closer level when my son Hank was diagnosed. He was 2 ½. PDD-NOS initially. And he was late to talking, he was late to speech, there was all these little signs and signifiers that in retrospect we probably should have picked up on maybe earlier. Rather than being super outgoing and wanting to engage with other kids or even us, he would always park it in front of the bookshelf, and just sit there and pull books off, and sit and read them. That was cute. And I also was like,
“oh he’s out of your hair, he’s just like very self, you know, self-managed, can just kind of hang out and read books.” But the speech wasn’t really coming, there was also a sort of intractability, and a lot of frustrations he was having that I think were connected to the lack of speech. And so we connected with a speech therapist who then worked with him a little bit who then suggested a full autism screening. That was in 2008. And, and honestly, my connection to autism was, you know, like anybody else. I didn’t know really anything about it. And so that began a kind of a crash course of “What is this?” and “What does it mean?” and “What does it mean to Hank and what does it mean to our family?” Which has been a lot of ups and downs.
Ari: A lot of parents talk about that crash course in both positive and negative terms – you get good information, you get bad information – can you speak to how that was for you?
Colin: I was just reading Steve Silberman’s book – and you know Shannon Rosa? I didn’t know she had gone down that damn track. You know doing all those weird alternative therapies. I know her as being such a pro-vaxxer and advocate for neurodiversity – that was surprising. I feel like we kind of started to go down that route. We had a naturopathic pediatrician who didn’t see any of those red flags to get that screening going sooner. She was like “Oh well he’s fine, we’ll wait and see.” “Oh, he’s probably fine…” I don’t think there was enough to really suggest that we needed to start therapies sooner than we did. But she was a vaccine skeptic. We had held off actually on his MMR vaccine on her advice – which was sort of funny, him being autistic – so maybe actually the reverse is true – not giving vaccines causes autism!
Colin: And, and then, just like, even at the screening – his autism screening – which we did at Doernbecher Hospital, Childrens’ Hospital in OHSU Portland. At the end of the conversation, we were like “What do we do,” and there were suggestions mostly about doing, you know, OT and speech therapy and then somebody — I don’t know if they’re obligated to do this — said “you can try alternative therapies, like dietary stuff, which is untested, but you’re welcome to try it.” And, and for me, always being a bit of a skeptic — it just never seemed right for us – that was our intuition. And so we dove into intensive speech therapy and occupational therapy and family training where somebody would come to our house and kind of, teach us how to connect and, and work with Hank one-on-one, which was a good thing, because it was so easy to let him do his own thing, and he really, it improved from us, kind of getting in his face.
Ari: So, tell me a little bit about, you know, what your journey was realizing that neurodiversity was a useful concept for you and for your family and for yourself?
Colin: Well, the first thing is that I love my son, so desperately. It is something innate in me. And so of course the idea of neurodiversity – the idea of accommodating his autism rather than hiding it away – appealed to me greatly because I’m first and foremost interested in his well-being, then and now and as he grows older. Hank wasn’t talking at 2 ½ or using first syllables or first consonants – and our nanny taught him this for yes and this for no.
And that sort of sufficed for a while. Then we started doing his therapies –intensive speech therapies and he started using full words but at the same time he started reading, and so by the time he was three, he was reading. You know, he started reading encyclopedias. There’s a video of him at three, maybe 3 ½, telling Carson all of the planets in the solar system. He could tell you all of the moons of Jupiter at three. You ask him a Greek god’s name, he could tell you the Roman name, and it was just like sort of a miraculous thing. And I know that not all people get to see that, it’s not as evident. I was able to frame the idea of autism as something that carries a lot of challenges, but then there’s sort of incredible gifts that come along with it as well.
Ari: What would you say, was there a defining moment when you sort realized that conversation, the public conversation on autism… perhaps should go in a different direction than the one it was going in?
Colin: Well I know that Carson had a really big moment. Right off the bat we were getting involved with Autism Speaks, I think because we wanted to do more. And there was going to be one of the walks in Portland. And Carson started gathering money and sponsors for her and my sister to do the walk, in Hank’s name, and she actually ended up raising the most amount of money as anybody in Portland. She was the top earner, the top fundraiser in Portland. I was on tour at the time. But when she went on the walk she noticed a bunch of autistic people protesting, which was incredibly eye-opening.
You think you’re doing this thing for the autistic community and yet there are probably very few autistic people in the march, in the walk, and they’re all on the other side of the kind of the picket line protesting, something must be up. We talked about this and started doing our own research, and then started seeing how Autism Speaks functions and the methods it uses to raise money – and that was sort of an immediate red flag to us. This is the most obvious and vocal autism organization – there must be others, there must be another voice somewhere. So who is the voice for the people who are protesting these walks? And it turned out it was I think the Thinking Person’s Guide to Autism was the first thing that we discovered and all of a sudden it was a different, COMPLETELY different conversation, and there was so much less of the horror stories, and parents freaking out and being overly stressed and talk about cures and things like that and so much more of the sort of celebration of these kids and, and it seemed to be advocating for autistics in a way that was so much more careful and loving and thoughtful. And smarter, too. And so that was what drew us to that, and then we found ASAN after that.
Ari: Well that’s fantastic. Let me ask you about societal change, as long as we’re talking about the public conversation on autism – in your experience, where do you think we need to open up barriers or really change public policy or really change society to create a more inclusive world for autistic people of all ages?
Colin: [takes a deep breath] Oh, man. I don’t know! I can only speak to what my own experience has been and the sort of the failings that we’ve witnessed, and I think that that will continue as Hank gets older, sadly, I think we’ll have an opportunity to see where there could be more done at every age. You know the initial hurdle that we had to climb over was just all those therapies that we did initially that not only helped Hank meet some developmental milestones but also just made him happier. We were never super intensive about it, but just kind of coaching him a little bit more to help the language stuff along, just opened up pathways for him, and we saw his mood get better, he became a happier kid. And I think every time that a challenge has come up you know, we work on it, and he overcomes it, and is a happier kid because of it.
But getting those services covered by insurance was insane. It was such a terrible experience. We ended up going a completely different route. We were getting denied for therapies that had been suggested to us by the professionals that we had seen at the autism screening and they say something like 26 hours a week, which our insurance wouldn’t pay for. They were paying for like, 5 or 6 hours, I don’t remember the details but it was not enough. We actually had to go to the insurance company and make a meeting and sit down with them and have two videos, videos sort of a before and after we had done some of these therapies before they were sort of convinced to cover some of them. We were super busy at the time too, but we also had a certain amount of freedom in our lives that I don’t think a lot of people have, and so I think there’s a lot of people who are poor or struggling, I can’t even imagine that they have the money or the time to be able to fight these guys, these insurance companies. I think it’s gotten better since then, now that legislation has been introduced, and I think that there is more covered that there were, but it was not a good time.
Ari: What about the school system?
Colin: And then once we got past that, and then all of a sudden you’re in the hands of the public school system, and in Portland I don’t know if it speaks to the broader national scene, but maybe. think it’s a fairly well-off city but a struggling school system. He was put into a kindergarten class that was actually a school that was 20 minutes away from our house, in a town where nobody is more than 5 minutes from a public school. It was not our neighborhood school. And from the outset, it was a very small classroom, and it was chaotic, it was a communication behavior classroom. And that was another thing, the fact that it was called the “communication and behavior” classroom and Hank could read, and he could see that it what it was called – and every time I would take him there, I’d be like, “What are you thinking? Here you are, you’re not a kindergarten, you’re in a ‘communication and behavior classroom’ because that’s what your problems are, you know? So already it was sort of framed in this negative way. And then the classroom was chaos, and the teacher was sort of overworked and there weren’t enough paras, and the paras that were there, some of them didn’t have any experience working with kids on the autism spectrum, and — it was just not a good scene. And then on top of it, there was just no spirit of inclusion. There was no interest in the broader school community to really include these kids. And there’s several examples. I mean, going to field trips to an art center, and you know they would go with the gen ed kindergarten class, but none of the kids from the CB, the communication and behavior classroom, would have nametags, you know they wouldn’t have their names on the list, every other kid would. And then you’d show up and they hadn’t set aside art materials for them, because they didn’t know they were coming, or it was sort of an after thought, so they’d have to scramble to find materials for these kids, and then on top of it, times you’d show up for you know, the winter program, and none of the kids in the CB classroom were in the winter program in ANY shape or form – weren’t necessarily going to have a starring role or anything, but I remember showing up, bringing Hank to school one of the parents was there and was like “Oh, the winter program is happening!” and I didn’t know about it, I hadn’t heard about this. One of the paras reluctantly shepherded us in to the auditorium and the gen ed kindergarten teacher saw that Hank was even sitting in the audience and looked sort of angrily at the para that had walked us in there, because, she said they were filming the program and I assume they thought Hank would be disruptive. And Carson had her own experiences – that’s a very long-winded way to answer the question. But I think what it speaks to is they just weren’t that interested in creating a real spirit of inclusion.
Ari: That’s really powerful, I think a lot of us remember similar experiences growing up in segregated programs of one kind or another. I’m glad you spoke to that.
Colin: There were opportunities for him to be included in the gen ed classroom, and I just don’t think that they ever really had the time or wherewithal.
Ari: Do you have time for a few more questions?
Colin: Oh yeah, yeah.
Ari: So, let me ask you a 2-part question. What is connecting with autistic adults meant to you as a parent, and then when you think about Hank’s future, you know growing up as an autistic child in a family that supports and accepts neurodiversity, what are your hopes for his future adulthood?
Colin: I’ll meet autistic adults on the road occasionally, or people will write me, you know, I think that they, they’ve heard me talk about advocating neurodiversity in interviews and things like that. And that’s really exciting to me, you know, it’s a glimpse into Hank’s future, it’s a glimpse into this community that I think has sort of been in the shadows for too long. So it’s awesome to see people out there being visible and you know, being sort of proudly autistic. That’s a powerful thing, because then that speaks to Hank’s own experience and knowing that he’s growing up into a world that will hopefully be more accommodating and more habitable. And there’s a long way to go, a really long way to go, it feels like. And Hank knows that. He knows. We’ve never hidden his autism from him, and we’ve just always framed it as a way – you know, you have a lot of challenges, but you have a lot of gifts, too. And his autism is neither a good or a bad thing, it’s just a way of being, you know. One way of being. And I think he’s now seeing first-hand and comprehending, like, as he’s being out in the world more on his own, how he might be discriminated against or treated differently because of his autism. I feel like we’re constantly having to kind of work through that and find the way forward and let him just be a kid, you know? And know that as he grows up, there’s a place for him, you know. And that he’ll be a welcomed and you know, maybe even loved, celebrated part of society, you know when he’s Vice President to the first autistic president. [laughs]
Ari: [laughing] Absolutely. Let me follow up on that, because actually the single most common question that we get from parents is, “How do I tell my child that they’re autistic? What was that experience like for you, and how did you work to form a positive self-identity in that sense?
Colin: That was a question early on, do you talk to your kid about his autism? And there’s a lot of people who just fervently wouldn’t – you know you read online about people saying “I don’t want him to be defined by this, and I want him to be a kid first” but then I read testimonials from autistic adults saying “My parents didn’t tell me until I was out of high school, and it was like this lightbulb went off, and all of a sudden all of my experiences prior to that were framed in a different light, if only I had known.” That was sort of the common refrain. And so, we’re like, “well, what different does it make, we’ll just tell him!” [laughing] And then we can just start the conversation now. And so it’s always been a part of it, you know, for better or for worse. I think we made the right decision. I think that he’s – he doesn’t bring it up all the time, occasionally he does, you know, questions like “Why am I autistic?” Like some tough questions like that, which I don’t have any answer to. And, you know, sometimes… feeling like he is in this kind of civil rights — maybe the wrong side of a civil rights battle, which I think… it’s probably daunting to him, but you know, he reads enough about the 60s civil rights movement to know that lots of good things came of that one.
Ari: Is there anything you want to leave us with, either as a message to other families, or as a message to autistic people, or the broader community about autism? Why don’t we start with a message to other families?
Colin: Other families. It’s a crazy journey, but having children is a crazy journey. We have a second kid now who’s 2 years old, who seems fairly neurotypical and that’s no easier [laughs] in fact, it has a lot of its own challenges, you know, in some respects. Having children is an insane proposition any way you cut it. And I think everyone’s experience is different, but I wouldn’t trade Hank’s autism for anything – Hank’s autism is who he is. There is no dividing Hank and his autism. If you were to pull his autism out, you might as well just pull Hank out of the world. So I think that’s a good way to see things – don’t try to divide your kid from his autism. Autism is just who he is, or she. And there’s a certain point, you gotta just pour love as you would with any kid, and not consider them to be this sort of divided child or, you know, somehow “diseased.” I think that’s the first thing that you need to kind of get out of your head. And that’s – that can be a journey for some people, but once you get there, it’s – it kind of makes the whole thing a lot easier.
Ari: That makes a lot of sense. Well, I think that’s a beautiful note to end on.
Ari: Thank you so much, it’s been great, Colin, you’ve been fantastic.
Colin: Thanks, oh thanks so much.