Autism and Acceptance: Genova on Her Book, Love

[Guest guest]

Autism and Acceptance: Genova on Her Book, "Love "October 12, 2012 8:30 am by Des Rochttp://www.blogher.com/love-anthony-book-about-autism-and-acceptance?page=fullBLOGHER ORIGINAL POSTI have low expectations for novels about autism, as the autistic characters in popular books like Rules, House Rules, and The Curious Incident of the Dog in the Night Time are portrayed so negatively -- as inscrutable, unpredictable, unreasonable tyrants around whom fractured, exhausted, resentful families revolve. Those stories do no show my reality -- I adore my autistic son, and our family life is generally happy. So you can imagine my relief in discovering that Genova's new Love carries a forthright message of autism acceptance.Love tells the intertwined stories of two contemporary Nantucket women struggling with parenting, loss, and the meaning of unconditional love. It is the perfect book for anyone who could use an introduction to autism, but prefers fiction over nonfiction. I spoke with , and here's what she had to say about her book's origins, her own experiences with autism, and what she hopes this story can accomplish.: As an autism parent, I really appreciated reading Love , because I've never quite read anything like it before -- certainly not a mainstream book that promotes any kind of autism acceptance. Was promoting autism acceptance a goal?: That was a goal of the book -- to take autism and bring it beyond the boundaries of the autism communities. You've learned so much in your journey to acceptance and understanding, and knowing how to live in a way that has peace, joy, love and all the good things. But people who don't have a child with autism, or who are outside the communities, just don't understand autism and are afraid of it, and have all kinds of judgment. So the families stay separated and isolated. I'm hoping that this book can help bridge some of those gaps, and connect us all -- we have more in common than our differences.Where did the idea for your book come from? Do you know someone who is autistic?Yes, I know someone really well. Like my first book Still Alice, which was inspired by my grandmother and so came from a deeply personal place -- this also came from a deeply personal place. My cousin is like a sister to me, and we were both pregnant at the same time with our first children -- me with a girl, her with boy-girl twins. They were born five weeks apart. We lived near each other, so we spent at least two days each week in each other's living rooms during that early parenting haze. We spent our whole first year talking about how our daughters would be each others' maids of honor, our kids will grow up together, and her son as going to play little league and be a great ball player like his dad, etc. -- all the things you dream about.At about ten months, Tracey started getting worried because wasn't talking, stopped using a spoon, started staring at the walls, and wasn't playing like the girls were. And I said, "Don't worry, he's a boy, girls are so much more social, boys are slower to talk, language development is different in all kids." So then [] thought "I think he's deaf!," but we did experiments and saw that while he reacted to sound, he didn't react when she called his name. She was really on his development from a very early age. And then when he was 16 months old, there was an article in Time about autism, and she read it, and she said, "Oh my god, that's it -- that's what this is!So I was there, I witnessed her first concerns, her denial, and the difference between her denial and that of her husband. was formally diagnosed at age three, but before that there was early intervention and so was stuck in the house because she had to be there during the therapies. Just witnessing all it took in terms of the emotional resources and the financial resources -- she had people in the house at least 35 hours each week. I witnessed go through all those stages of grief -- the rage and despair, and I was heartsick right along with her.But 's 12 now. He's still non-verbal, but at this point there's more acceptance and peace, though there will still be those days when 's emotions flare up: "Why me, why'd it have to be like this, this is too hard…" but mostly what I see in her is a beautiful unconditional love, where she loves this boy for who he is and wants him to have the best life possible, given what he's capable of and what makes him happy. It's a humbling, beautiful journey if you can look at it that way. I don't think most people are truly asked to love someone unconditionally. I see parents all the time who aren't speaking to their children because they don't like the decisions those children have made as adults, or husbands who cheat on their wives and then the marriage is over. And no judgment on any of that -- I just think it's really hard to love someone unconditionally.When we have typical kids, our love is reciprocated in a way we were raised to understand -- my two year old is running around right now, pretending to be a dog, and it's really easy to love her: I hug her and she hugs me back and she looks me in the eyes, and she smiles, and she plays with me, and I get that feedback from her. But if you've got autism and its way of expressing and feeling love are different, it can be hard to experience those connections we're used to feeling with each other. does make glancing eye contact, and he loves to be touched -- he's easy to love, but it's in energy more than in the words. And you have to learn that, because it's harder to do -- but when you learn to do it, it's awesome. When you can sit next to him and just know that you love him and he loves you back, without having to talk about it, or rely on words and conversation -- that's pretty powerful.Did you talk to autistic people to get into this autistic mindset? How did you get into 's head?I talked to parents and therapists and physicians, and I read a lot of first-person accounts, but most of those were from people who have Asperger's. Carly's Voicecame out right as I was finishing the book, so I didn't have the opportunity to read that. But I did read the writings of Tito Mukhopadhyay, I watched A Mother's Courage, I read The Horse Boy, The Siege, Born on a Blue Day, and that all helped me understand the continuum of the experience. I also talked with neurologists about what limited information we have about how an autistic brain might be organized -- I made a literary interpretation, and that's how I came up with the idea of the rooms in ['s] brain.When my grandmother had Alzeheimer's, one of the beliefs she held up to the day she died was that she was a smart person. So she was constantly trying to make sense of the world according to the truth her brain gave her. And we all do that. So if you have autism, you're making sense of the world according to the truth your brain gives you. You don't think of yourself as disabled, or as having different wiring -- you just think "this is how my brain works, and this is how I perceive the world, and emotions, and people."I read as much as I could, and then I just tried to crawl inside that little boy.How did you choose The Siege and The Curious Incident of the Dog in the Night Time as the autism books to feature in your novel?I chose The Curious Incident because it's a book people might have read -- it would feel familiar and not totally foreign, readers would think, "I remember that book about that boy who had Asperger's." With The Siege, I'd been reading Son Rise, and The Way I See It, and A Child's Journey Out of Autism. But with The Siege, I was just amazed -- here was this book that was written so long before autism became this "thing." It's about a mom in western Massachusetts who had a bunch of kids, and the youngest, Jessy, had autism. The professionals basically told the mom they didn't know what to do, that she could institutionalize her daughter. But instead -- with such love and compassion but also with so much rigor -- became her child's therapist. I found it a really accessible book that a lot of people might not know about because it's old -- it was written in the '60s. This is back when mothers were being blamed for their child's autism, and told about the "Refrigerator Mom," their and their kids were considered schizophrenic. It was so outside the box for the time. I loved the book, it was absolutely one of my favorite books in terms of understanding autism from a compassionate point of view, and a hopeful point of view -- and it was a book that I thought a lot of people might not have heard of.It sounds like The Siege affected you much the way you describe it affecting Love 's BethThe Siege affected me, and I really loved it -- but it was also a very deliberate choice. My first book, Still Alice, was read by millions of people, which was awesome and cool on so many levels. If Love should have the good fortune to have that kind of success, I have an enormous responsibility and opportunity within the story to give people access to education and information.The Siege is a book that could help a lot of people, so why not put it in there. It seems like there were many other deliberate, subtle educational choices going on in your book. I have to be honest, I was really distressed by the first half of the book, because of your character Olivia's despair and her anger, and all the money she talks about having to spend on therapies, at the damage she considers her son 's autism to have wreaked on her life and her marriage. But then the book ends up at a place of acceptance. And I'm wondering if that was a deliberate choice, to show this evolution, this autism parenting journey that ends with a mother accepting her intensely autistic son for who he is.Absolutely. One of the goals when you write fiction is to tell the truth under imaginary circumstances. When I was doing my research, I was looking for the common threads and universal truths. Once I feel I understand the truths as much as I can, I can leap off into fiction. And one of the truths I came across is that almost all the autism parents went through stages of grief -- the stages weren't necessarily linear, and it was different for every individual, but there were usually some elements of denial, anger, and bargaining and despair -- and then hopefully, ultimately, acceptance. I thought it would be useful to show that truth in Olivia's journey.I think a lot of people outside the autism community think of autism families with doom and gloom, through clouds of sadness and pity. And while it can be a really difficult journey, and I think autism families need a lot of love and support -- for the families that have gotten to a good place, this is just their kid! And we can treat these families and children and adults as people, and not these people who are so different and sad. But I thought the journey was important to show, because it's part of the truth of the experience. It's part of a process, even though the anger is temporary.There's so much bad information and misinformation about autism, which makes it hard to figure out where to start and where to go. You showed that with Olivia's character: when her son was first diagnosed, she felt like she had to do everything, try everything, all the alternative treatments -- and that's so dangerous and heart-breaking. I'm grateful that you showed Olivia moving on from there. I also noticed that you didn't really mention vaccines, except to have say that "shots don't cause autism." There was a bit of fear around writing this book -- in wading into such an emotionally and politically charged topic. Because we don't have answers yet, not from the medical community, not from the doctors I talked to -- they weren't taught about autism in medical school! So in the absence of answers the parents have been creating their own hypotheses, and less-than-ethical physicians have been coming up with their own treatments without the proper protocols. I absolutely wanted to put my own conclusion about vaccinations in, but I didn't want to get too heavy-handed about it. So I used simple logic in having say that not all kids who get shots get autism, therefore the shots can't cause it. I didn't want to step in it, but I did mention it -- going back to "telling the truth under imaginary circumstances," it seemed I needed to make some mention of vaccines, since it's been such a hot topic. It's really amazing the way popular media tools like your book can shape the way people think about such important topics. So, thank you -- I really appreciate it. I'm so excited about the potential about what this book can do. It's similar to Still Alice, my previous book about Alzheimer's -- people are terrified to talk about Alzheimer's, don't really want to know about it, because it's perceived as "losing your mind." There's so much stigma attached to it, and people treat Alzheimer's like it's contagious. But because Still Alice was fiction, it dragged the topic out into the open -- people were discussing Alzheimer's in their living room, at book club, with wine in their hands -- and they come to book events, where I was able to broaden the scope of what we talked about, beyond the story itself -- to discuss the difference between Alzheimer's and dementia, what those terms mean, who's at risk. It's a springboard for getting information to people, and the book is just a starting place. I hope Love can have a similar effect -- so we can talk openly about this perceive scary thing called autism.I think reading a book like yours is a way to help parents of kids with new diagnoses understand that -- even as they struggle to accept their new reality -- autism doesn't have to be about pain and tragedy. That's my hope.Thank you, me too.Olivia is pretty isolated, not just on the island of Nantucket but in terms of not mentioning any of the online autism parent support groups that are really quite popular -- she comes to her journey of acceptance on her own. I was wondering if that was intentional, to show parents that they could do it on their own, reach a place of acceptance, even if they didn't have a lot of external support?I toyed with the idea of including a chapter on support groups, and I did mention that they went to some counseling and in-person support groups, but I didn't create a part of the story where support groups help her on her journey to acceptance. I wrote a little at one point, but it seemed like it was too heavy handed, like a manual or self-help. So I left her isolated in her journey -- even though I did mention support groups in Still Alice. And I'd like to include more autism support resources when the paperback edition comes out.I have to ask after the rather spiritual message at the end, which was again about unconditional love … is it spiritual? It was, in a magical realism sense. For me, it was definitely a spiritual kind of message. I knew I wanted to write about autism, because I'm passionate about the brain and how it works -- all my books have to do with the brain in some way. And I have the connection with and and knew I wanted to write about them someday. But as a neuroscientist, we don't know enough about autism yet. I have this huge textbook from my graduate school days at Harvard, the Principles of Neuroscience. It's the Bible for neuroscientists, it's over 1000 pages. And the word 'autism' is not in it.As a neuroscientist who writes novels, I really wasn't ready to write this book, because we don't have neuroscientific answers for autism yet. But when I spend time with my cousin and and see what they went through and continue to go through, and what autism is, where they're at is that neuroscientific answers would be nice. To help communicate, and be able to handle all the sounds in the room and not have them hurt him. So what we have in the absence of scientific answers are spiritual answers that help us understand him, and asks those questions all time, she's far more spiritual than I am: Why is here, why does he have autism, why would God give me this child who is so hard to reach? So these are real questions that you've encountered?Yes. And the answer is that he's here because he is -- and this is how he's here to experience the world. And like with every relationship we have, hopefully you're here to love that person, without condition. I think my cousin has learned that spiritual message, and it's helped her in other relationships in her life, not just with her son -- to come to that understanding of why we're all here. It was a surprising book for me to write in that sense, because in my other two books I had the training wheels of my neuroscience background to lean on whenever the writing got too difficult. In my first two books I felt like a neuroscientist writing novels, and with Love I became a novelist. And right now I feel like in the absence of a scientific answer or knowledge about autism, we can have a spiritual answer -- we know a lot more than we think we know. And this kind of acceptance frees you from the chronic sorrow of the expectation of the life you thought your child was going to live.If you can focus on what "is" and accept it, and allow it, then that's what necessary in living well with autism. Accepting what is.---- Des Roches prepares for parties by choosing a book to bring along in her bag. She writes at ThinkingAutismGuide.com, BlogHer.com, andSquidalicious.com