Autistic Teen Shares Memoirs of A Unique Life
Wednesday, September 9, 2009
A local, 22-year-old high functioning autistic student joins us to discuss his memoir, Episodes - My Life as I See It. It's a unique glimpse into an adolescent mind that is just wired differently.
MAUREEN CAVANAUGH (Host): I'm Maureen Cavanaugh. You're listening to These Days on KPBS. There are some who say that television is a bad influence on children. But for one young man who lives here in San Diego, TV has become the inspiration for a unique catalog of the events and people in his life. Blaze Ginsberg struggled in his early years. His family and teachers knew Blaze was challenged at school and had trouble communicating. He eventually received a diagnosis of high-functional autism, and he began writing. The book he produced is a memoir like no other. Blaze Ginsberg outlines episodes in his life like episodes in a TV show, with characters and quotes, summaries, even a list of music as a soundtrack. The book is called "Episodes: My Life as I See It." And it's a pleasure to welcome author Blaze Ginsberg to These Days. Good morning, Blaze.
BLAZE GINSBERG (Author): Good morning, Maureen.
CAVANAUGH: And Blaze's mother, Debra Ginsberg, is also here. She wrote "Raising Blaze: A Mother and Son's Long, Strange Journey into Autism." Debra, welcome.
DEBRA GINSBERG (Author): Hi, Maureen. Great to be here.
CAVANAUGH: Now, Blaze, this is such an interesting format for a book. Tell me where the idea came form.
BLAZE GINSBERG: Well, it all started when I was doing a series of research on various TV shows on various websites. And I was – I realized on a website called TV.com there – for the main TV show, there was the first episode and like the next, previous or last episode of the series.
CAVANAUGH: Right, yeah, and so you decided that that's the best way to relate the things that happened in your life?
BLAZE GINSBERG: Yes. Mostly there was one thing that was occurring that I wanted to write about and state the fact how it's ended because I actually didn't like it.
CAVANAUGH: So tell me, tell our listeners who haven't seen the book, what does it look like? Like when you go into a chapter and it outlines sort of like the plot, right?
BLAZE GINSBERG: Umm-hmm, the series summary…
BLAZE GINSBERG: …is the sub-word for the plot here.
CAVANAUGH: And that would be what's going on, right?
BLAZE GINSBERG: Yep. In the series, right?
CAVANAUGH: Right, in the series, your life.
BLAZE GINSBERG: Yes. That's pretty much what goes on in the series, the series summary.
CAVANAUGH: And then you have a cast of characters.
BLAZE GINSBERG: Umm-hmm.
CAVANAUGH: And you're usually one of them.
BLAZE GINSBERG: Yes.
CAVANAUGH: And the thing that also I like is that you have – you actually pull out like famous quotes from what's going on.
BLAZE GINSBERG: Yeah, I do.
CAVANAUGH: What makes you decide on one quote as opposed to another?
BLAZE GINSBERG: What do you mean?
CAVANAUGH: What I mean is, what – why does – why do certain things stick out in your mind as being good quotes?
BLAZE GINSBERG: Oh, well, it just appeared to be like the most, you know, well-known quote to the episode, you know.
CAVANAUGH: Uh-huh. Right.
BLAZE GINSBERG: That's what – I guess that's where I guess I'm going in that case.
CAVANAUGH: And then you also have the idea of music. Now where does the music come from?
BLAZE GINSBERG: That's just what plays in my head that day. What song I – What – I went back to the day, I'll hear a song playing in my head.
CAVANAUGH: Uh-huh. And, I mean, you know the artist and you know the song title, it's not just, you know, some song. Does it go to the episode? Does it have meaning inside the episode as well?
BLAZE GINSBERG: I mean, on occasion, yes, and because then if there's a annotation, a reason why it's playing, then it does have a meaning. But if it's just there then it's just because I heard it that day playing in my head.
CAVANAUGH: Now I wonder, when did you start writing these episodes about your life?
BLAZE GINSBERG: I started writing them on February 24th, 2006.
CAVANAUGH: Why did you start on that day, do you know?
BLAZE GINSBERG: Can you artic…
CAVANAUGH: Yeah. What made you want to write these things down?
BLAZE GINSBERG: Oh, like I said, it was because I – there was – I was thinking about how something in my life was ended and I just wanted to write about the fact that it's over. I wanted to state it and indicate that it's over.
CAVANAUGH: I see. Okay. Now, Debra, you wrote the introduction to Blaze's book and I'm wondering, you know, anyone can see from the introduction that you're so delighted and you're so proud about his writing. Now, you're an author yourself. Tell us a bit about this journey you've been on with Blaze.
DEBRA GINSBERG: Well, I always knew that Blaze had a gift for metaphor. And I – he always loved to write. He would write little poems and little snippets of songs and that kind of thing. And I never really pushed him because it was something he enjoyed so I just sort of let him do it as he wanted to. And then at one point, like he said, he started writing these things down and he showed me. He had a few pages, and he showed me and I looked at the format and I thought to myself, wow, this is just totally brilliant. You know, who – It's really – it's completely original and, as an author and as a writer, you know that it's so difficult to find something, to create it yourself or to even read something that's truly original and yet somehow conveys sort of universal themes. And I thought this is an amazing, amazing format to put a memoir in and nobody's done it. So I encouraged him to keep going and I said I think this is really good, keep going. And he just went, and he had so much more material to put in there. And when he had about 50 pages or so, I showed it to an agent, a kid's book agent, and I thought either he'll totally get this or he won't. And if he doesn't, whatever…
CAVANAUGH: Right, right.
DEBRA GINSBERG: …will happen, will be, will be. But as it turned out he just – he thought it was great, too.
CAVANAUGH: Now, Blaze, when you showed your mom those original pages from the book, what did you expect her to say?
BLAZE GINSBERG: You know, I never had – I expected her to – I hoped she would like it. I never really expected her to really – I never had any major expectation. I just really wanted her to like it, that's all.
CAVANAUGH: And then when she said keep going, did you feel like, wow, this is going to turn into something?
BLAZE GINSBERG: You could say that, yeah.
CAVANAUGH: Well, you know, Debra, I want to ask you a little bit about, you know, the whole idea of Blaze, you know, kind of struggling in school in the beginning when he was young and you – you have a – you found out that he's a high-functioning autistic child. And I wonder, what is that?
DEBRA GINSBERG: Well, actually Blaze came – we came to the diagnosis quite late actually in…
CAVANAUGH: Right, right.
DEBRA GINSBERG: …Blaze's life. He was 19 when we got the diagnosis. But that didn't mean that we didn't have many, many, many, many other diagnoses sort of tossed at us throughout his school career. And that's because high-functioning autism – I don't think it was – It wasn't as well known in – when Blaze was in elementary school that autism is really a broad spectrum and you have what people understand as classic autism on one end where kids are non-verbal, and may have repetitive body – uncontrolled body movements and that kind of thing. I think everybody's familiar with that now.
DEBRA GINSBERG: But all the way on the other end, it may manifest just as sort of social impairment and communication problems and processing issues. And that wasn't really being discussed as much when Blaze was in elementary school. But the funny thing is, I wrote, originally, "Raising Blaze" had a different subtitle because Blaze didn't, in fact, have a diagnosis of autism at that point. And what happened was, it was published in 2002 and as the years went by, readers would write to me and say, well, of course, he's on the spectrum, right? He's on the autism spectrum. So sort of readers diagnosed him as the years went by.
CAVANAUGH: That's fascinating. You know, in your introduction to Blaze's book, "Episodes," you relate a fascinating story of a conversation you had with Blaze when he was about ten and he was telling you how his mind was working. Can you tell us a little bit about that conversation you had?
DEBRA GINSBERG: Right, well, this is when I knew Blaze had this – had a gift for metaphor, you know, because we were talking and he was explaining to me that everybody had wires in their brain that controlled – the different colored wires that controlled different kinds of emotional states and actions. And there was a blue wire and a red wire and, he said, but the yellow wire was the wire that controlled hearing. And by hearing, he sort of meant sound processing, information processing, that kind of thing, the way he described it. And he said that when he was – his yellow wire was too short and so that when he was born, it snapped and so it was broken and that's why these things were a problem for him. And I thought, well, that is just a really brilliant way of explaining that he is wired differently…
DEBRA GINSBERG: …quite literally. And that wasn't anything I planted or anybody planted in his head, it was just how he saw it.
CAVANAUGH: Blaze, I wonder, do you remember having this conversation with your mom?
BLAZE GINSBERG: Yes, I do, very much so.
CAVANAUGH: And what's your perspective on having autism?
BLAZE GINSBERG: What's my perspective?
BLAZE GINSBERG: Is that high-functioning, low-functioning, autistics should have the same education rights and to be accepted the same way that any non-autistic person would be accepted. Just we're all really good people. There's nothing wrong with us, we're just wired differently and act differently and have a bunch of different, you know, things that we do in our life, you know.
CAVANAUGH: Right. And things really started to turn around in school when you found a school that had a – a local school that had really good support. And, Debra, you talk about that in the introduction.
DEBRA GINSBERG: Yeah, it was wonderful for Blaze. He entered – This was a non-public – a small, non-public school and they didn't require, actually, a diagnosis. Blaze didn't have one at that point. And they were able to give more one-on-one attention. It was just a – it was a really great fit for Blaze. It was perfect and things really, really did start turning around at that point.
CAVANAUGH: And, Blaze, now you're going to college.
BLAZE GINSBERG: Yes, I am.
CAVANAUGH: Where abouts? Which college?
BLAZE GINSBERG: Vista View.
BLAZE GINSBERG: It became Mira Costa.
CAVANAUGH: And I want to…
DEBRA GINSBERG: Well, there goes that.
CAVANAUGH: And it was kind of rough in the beginning going there.
BLAZE GINSBERG: Yes, it was.
CAVANAUGH: What kind of problems did you encounter?
BLAZE GINSBERG: Well, my English professor didn't believe me I did my work, and I had a really – counselors – bad counselor basically told my mom that I'm a retard, I don't belong in college, is the farthest thing from the truth. And basically I thought I was going back to kindergarten and I didn't really appreciate that and I didn't – that's why I've never really been that crazy about college since.
DEBRA GINSBERG: You know, I think a big problem here is that there is a much better understanding of autism and high-functioning autism and the spectrum on the elementary school level and perhaps even on the middle school level. But when we get to high school, and especially now when we get onto the college level and especially the junior college level, there's a complete lack of understanding of what high-functioning autism is. The problem is that it's not an immediately apparent issue. You don't see it. And a lot of times you can see, Blaze, you know – Kids are totally articulate, intelligent, it's got nothing to do with intelligence level but it's a communication issue. And the problem is trying to get somebody who has a communication disorder to explain their communication disorder is a contradiction in terms. And there's not enough training or awareness on the college level and this makes it really difficult.
CAVANAUGH: But in essence, in the book, Blaze has done just that. I mean, it's – he explains how he sees the episodes in his life and how he communicates. You know, Blaze, in your book, "Episodes," you talk a lot about stuff all teenagers and young people are interested in, music, school, getting crushes on movie stars and neighbors. And do you think you're a little bit more honest about your life than other people?
BLAZE GINSBERG: I mean, yes, because for me, I pretty much know in advance whether I like someone that way or I don't like someone that way. It's like never – I would never just, you know, like, oh, I think I like them and just all of a sudden sever the relationship and I don't like them. I know, I'm a law in advance person. That's basically for everything in my life.
CAVANAUGH: That you know right up front whether you like somebody or not.
BLAZE GINSBERG: Yes. And…
CAVANAUGH: And whether you like a song or not?
BLAZE GINSBERG: Yeah.
CAVANAUGH: Uh-huh. But you learned to like college.
BLAZE GINSBERG: Eh, I did for a minute when I started hanging out with Nick in the book and we would like – we would always joke around and he'd come to my house and play around with the dogs (sic) and Andreas. We'd have a lot of fun but then ever since about fall of last year, I've just been back in the same place it used to – it was before.
DEBRA GINSBERG: Like might be a strong word.
CAVANAUGH: Okay. All rightie. Are you going to be touring to go around with this book at all?
BLAZE GINSBERG: Only on the satellite as far as I know. I don't think I'm going to be going like anywhere physically.
DEBRA GINSBERG: Well, we're just – tomorrow night, though…
BLAZE GINSBERG: Oh, for the book signing, right.
DEBRA GINSBERG: Yes.
BLAZE GINSBERG: Aside from that and another event in October, I don't believe I'm doing any physical touring.
CAVANAUGH: I see. Okay. Are you going to be going – are you going back to school this semester?
BLAZE GINSBERG: Yeah, I'm going back to school.
CAVANAUGH: All right. Now, I wonder, Debra, what advice do you have for parents who have a child and a young man here, who – with high-functioning autism. What can they learn from your journey?
DEBRA GINSBERG: Well, my best advice always, and many people have written to me since "Raising Blaze" came out, is to trust your instincts. Parents always know. They can always tell when something's going on. And a lot of parents hear, I think, from medical professionals or other professionals, it's fine, he'll grow out of it, it's okay. A lot of boys develop late, that kind of thing. But trust your instincts if you think something is going on. It pays to have your child evaluated and because there are a lot of great educational and behavioral strategies available now that weren't when Blaze was in school. And I think those, in the long run, can be really, really helpful.
CAVANAUGH: Blaze, I want to congratulate you on your book.
BLAZE GINSBERG: Thank you very much.
CAVANAUGH: Blaze Gingsberg has written: "Episodes: My Life as I See It." And he will be at Bookworks tomorrow at 7:00 p.m. to sign copies of that book. Blaze and Debra, thanks so much.
DEBRA GINSBERG: Thank you, Maureen.
BLAZE GINSBERG: Thank you.
CAVANAUGH: And you've been listening to These Days on KPBS. I want to tell you that coming up, we will be talking with renowned surfer Rob Machado. Stay tuned as These Days continues.