What inspired you to start your blog “Autistic Speaks” and what is your inspiration to keep it going?
I began my blog in June of 2009, and, truth be told, I was doing it entirely blindly. I had no idea what my story was, where I was going with my writing, or how I would get there. It was actually my best friend from college who told me that I should try blogging, and, knowing that I loved to write, I figured, why not? It took quite a while for me to get into a groove, but once I did, I realized that my typing made me who I am and gave me a voice that no one could ever take from me.
My reasons for continuing to blog are many. First, I think it is essential that parents of people with autism hear what it’s like to be autistic straight from the horse’s mouth. It’s great if clinicians can analyze behavior and if teachers can teach kids how to learn; believe me, that’s very important. But until parents understand what autism feels like, they’ll never know how to best help their kids. Secondly, and perhaps no less importantly, blogging is my way of connecting with the world. As I live my days, I do everything with the mind of, “Could I blog about this?” Blogging helps me to process my experiences and emotions and sort through my thoughts and feelings. I have developed such a sense of self since I started to blog, and I greatly rejoice in knowing who I am and why I am here.
How did you get the idea to write your first book, "Interview with Autism?"
I answer many questions about autism day in and day out. Between my blog, email, and message boards, there is always someone who has a question. So, in my first book, I took forty of the most common questions that people ask me and answered them. The book went through quite a few iterations, but in its final form, it is a series of questions I took from parents, friends and family which I have answered as fully as I could. I believe that "Interview with Autism" gives the reader a good sense of what I’m like and how I function.
With your book and blog, can you describe the moment you knew you were actually making an impact and helping more people understand autism?
Back in June of this year, I published a post called “Internal Yardstick.” I described the concept that a person ought not to measure her success in comparison to the success of others, but rather she should measure her success only in comparison to herself. This was a revelation for me. For so many years, I’ve done nothing but compare myself to my peers. From driving, to boyfriends, to teaching jobs, I’ve often fallen short. I realized, at the time of the “Internal Yardstick” posting, that I in fact had much to be proud of in myself. While it can be hard not to measure my success in numbers of readers, I find that I am most successful and reach the most people when I write from my heart. Whether I reach 20 people a day or 500, what matters is that I’ve enlightened each individual to life with autism…not the numbers themselves. So, in realizing that the numbers weren’t what mattered, I came to know that I was making a real impact.
What inspired you to write your second book, "Living in Technicolor: An Autistic's Thoughts on Raising a Child with Autism?" How is it different from your first?
My second book was something of a collision of events. First, I’d been quietly dreaming of writing another book in the back of my mind. And then, my service dog trainers suggested that I put together a calendar or book of recipes in order to fundraise for my dog. Thirdly, I’d had in mind for some time that I might publish some of my blog posts. And, with all of that happening at the same time, "Living in Technicolor" was born. This book is so much more personal than the last. If you compare Interview with Autism to meeting someone for the first time and chatting, then "Living in Technicolor" is like talking to your best friend over something deep. It’s an intimate look into my life and my mind. While it’s hard to put myself out there like that, I also believe it to be entirely necessary. People need to know what autism is really like: the good, the bad, and the neutral. In "Living in Technicolor," I explain a lot about my communication difficulties, my feelings, and the relevance of my faith to being autistic. It’s like I’m giving a piece of myself to my readers.
What is the one thing you want people to learn about living with autism after reading your blog and books?
More than anything, I want people to realize that things aren’t always what they appear. Sometimes, it would seem to an outsider that I am not really there…when, in fact, I know everything that is going on. Just because I don’t always speak doesn’t mean I don’t have anything to say. Other people, seeing me on a good day, witness me sitting in a church group and “listening,” and make comments that I seem “just fine.” The reality is that I have a migraine, my skin burns, my stomach is nauseous, and my hands are shaking because I’m sitting under fluorescent lights. Just because I appear “fine” doesn’t mean that I’m not going through a lot to look that way. Rather than make assumptions that I’m just a regular cute, smart, happy girl because I’m having a good day, or that I’m not really there, miserable, or unintelligent because I’m having a bad day, I wish people would ask me.
What do you think is the most rewarding thing about writing?
I love the communication aspect of writing. I can sometimes communicate verbally (though I always find myself tied up and limited in what I am able to talk about), and other times I can only type. It varies from one hour to the next, and it’s related to the amount of sensory and emotional input I’m receiving. I have trouble using my speech to communicate… I tend to think of something in my head, burst out with whatever it is, and then I’m off doing something else by the time the other person responds. Communication is a two-way street, but when I use verbal means, it’s all about me. When I write, that changes. I can listen, I can use social language, and I can carry on a reciprocal conversation. I’m free when I write.
Do you have plans to write any other books? If so, what do you want to write about?
I am working on a children’s book. The goal is to write a book that parents can read to their children as a means of explaining to the child that he is autistic and what that means. It presents autism as a difference in the child’s brain and part of what makes him unique. As far as other books for adults, I’d certainly love to! I don’t know what I’ll write about, though. I mean, autism, to be sure, but I don’t specifically know the subject matter. I’m confident that it will come to me in the middle of the night sometime!
Where can people go to buy your books?
My books are available on Lulu at www.lulu.com.
What else do you want people to know about you and your life?
As I say in my presentations, I’m so much more than autism! I am completely obsessed with my cat. Oh, and every time I say or type “cat” I have to find her, so that makes twice in the past ten seconds. I love my family immensely. My mom is the best mom in the whole entire world. I’m positive about that. My sister is amazing. She edited my second book and she gives me help with business-type things and she stands up for me no matter what. I’m beyond excited to get my service dog within the next year. I am more than a little addicted to Diet Mountain Dew, but I’ll only drink it out of a 24-ounce bottle. I love to swim, knit, and do other crafts. I read voraciously. I write poetry when the fancy strikes. I love my life and just about everything about it. I’m not sure I’d change a thing.
What advice do you have for others living with autism who are working to get their own projects and ideas off the ground?
First, know your audience. For me, I like to work and communicate with parents of children with autism, so I focus on that. Second, don’t be afraid to contact people. I reach right out to some of the most famous people in my area and the world… and sometimes they really do help me out. If something falls through, keep trying, again and again. Third, find your way to communicate. If I didn't try to reach people the way I do in my books by speaking to them… I’d be lost. There are so many ways to communicate: speaking, reading, writing, sign language, art, music, sports, dance… find the best way for you. Finally, and most importantly, be confident and believe in yourself! When you display confidence, people want to get to know you. Since you’re worth it, worth getting to know, make sure everyone else is aware, too.
What’s your next project?
Right now, I’m getting involved in traveling and speaking, or, more accurately, reading. I will read my hour-long presentations to groups of mostly parents and then take questions (which I will most likely need to type out my answers and then read them aloud). I have four or five engagements in the next six weeks, so this is taking up most of my time. I’m not the least bit nervous; actually, I’m very excited!