Maw Books

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I just reviewed Leeann Whiffen’s fantastic memoir A Child’s Journey Out of Autism. A book which drew me completely into Leeann’s life as she battled to reverse Clay’s autism diagnosis.  A battle which she won.  Something that I didn’t know you could do.  It’s a book which I highly recommend.  I’m lucky enough to live nearby to Leeann who is also an avid reader and we now frequently bump into each other at various author signings.  If I could have everybody meet Leeann I would. Her personality is so much fun.

If I may be so bold to say, this is one heck of an author interview.  I love Leeann’s thoughts about her book, autism, reading and her life.   Please leave her a comment!

Maw Books:  Why did you write A Child’s Journey Out of Autism?  What was it that gave you that initial spark?

Leeann Whiffen: I just kept feeling it. I would be going about my day, and then I’d feel it. You need to write this down. So I blew it off for the first few times until I realized that each passing day made it harder for me to remember certain details. Initially, my intentions were to write our story so that Clay and my other two boys would know everything that transpired. But as I began the writing process it became clear to me that there were other reasons why I needed to write and share this book: to give parents hope and inspiration, to bring awareness to the struggles families endure, and so that my book could be the friend and support that many parents need along their own journeys.

Maw Books:  I know you love to read (and I love bumping into you at author signings) but did you love to write previously before writing your memoir?  In other words, did the writing come easily (well as easily as it could get I guess) for you or was it a struggle?

Leeann Whiffen: No. I mean, I know that must sound strange considering many authors seem to kick off their writing careers by winning the fourth grade write-about-your-favorite-tree contest. But, not me. I’ve always had a love for the written word, but I didn’t realize my love for the actual writing process until I began writing my book. I found that I’m able to articulate myself much better in writing than verbally. It gave me a freedom and creativity with language that I had never before experienced. That realization then lit my passion as I spent many hours studying and practicing the craft. I took what I learned and used it as I found my own voice and style.

Maw Books:  Was it cathartic at all to analyze your feelings that you didn’t have time to deal with during Clay’s treatment?  What was it like emotionally to write this book?

Leeann Whiffen: I never intended it to be cathartic, but having to relive every emotion, every experience so I could accurately portray our story was one of the most agonizing yet exhilarating experiences I can recount. There were times where, after finishing a particular sentence or paragraph exactly the way I wanted, I felt light and airy. I’d get silly with my kids and dance around the house for the rest of the day. I’m not sure if I ever really faced the grief the first time around. I seemed to gloss over it while I distracted myself with trying to launch Clay’s behavior therapy program. There were times where it took me quite some time to complete certain parts of the story because it was just too heavy; but afterward I felt like I had just overcome that difficult part of my life, all over again.

Maw Books:  One thing that I was really impressed with is that seemingly within days of Clay’s diagnoses, you had already researched and were implementing a plan of attack for his treatment.  What were those first few weeks like and how important were they?

Leeann Whiffen: The first weeks after diagnosis were a whirlwind of emotions probably due to a combination of grief and pulling all-nighters as I desperately tried to figure out what we were going to do. Suddenly, it became real and impending. I think I was frantically working my way out of the grief, a distraction of sorts. The immediacy was warranted because I had already done so much research, and I knew that timing was vital. The clock became my boss as I began putting the pieces into position.

Maw Books:  As a parent, I can only imagine that losing a child to autism is devastating.  But yet, through early intervention, you were able to reverse Clay’s diagnoses. Have you received any pushback or felt any guilt because of this?

Leeann Whiffen: Guilt, absolutely. I have friends who also worked feverishly to help their child with autism, yet their outcomes weren’t the same. I ache for them. We dreamed the dream together. After Clay’s diagnosis was removed, I found that I couldn’t tell some of my closest autism friends. I knew they would be happy for me, but I also know the feeling of wanting something so much, that you would not hesitate to give your life for it. You’re happy for others, but oh, how you want it for your own child. Mothers place so much guilt on themselves that as women we need to stick together and make sure we support and uplift one another. Pushback, not so much.* Some resentment, yes. But I understand where it comes from.

*Of course there’s general pushback from certain groups who believe autism should not be “treated” or “cured” but that we should accept the individual for who they are. I don’t agree that those two things are mutually exclusive. We can accept our children while also helping them cope and reach their full potential in life. That’s also our responsibility as parents of “typical” kids.

Maw Books:  If a parent suspects that their child has autism or is diagnosed with autism what is the first thing that you would want them to know?

Leeann Whiffen: Early intense intervention = best prognosis. That’s not just Leeann’s “I’m a mom of a child who recovered from autism” philosophy. It’s backed by the American Academy of Pediatrics, the U.S. Surgeon General, and decades of research. I encourage and urge parents to look beyond what the school district and/or state early intervention program provides. Make sure it is intense enough to make a difference. My early intervention specialist admitted that Clay’s needs were way beyond what they could provide. Unfortunately this often means parents have to find funds (sometimes to the tune of $50,000 per year) to supplement or start their own programs. But it’s worth it. Take action right after diagnosis because time goes on whether or not you stand by and watch, or jump in headfirst.

I try to make it clear that although my son recovered from autism, not all children will have that same outcome. And doing what we did doesn’t guarantee success because each child is unique. But how do we determine who will and who won’t? We can’t. That’s exactly why I continue advocating for early intense intervention and helping parents gain fast access to potentially life saving treatments. Because even if the end result isn’t full recovery, research shows nearly all kids will progress to some extent with early intervention – especially those implemented with a high degree of intensity.

Maw Books:  And where is the first place that they should turn to receive support and information about early intervention?

Leeann Whiffen: Autism Speaks has a 100-day kit for newly diagnosed children here. It includes extensive resources, many of which are tailored to where you live.

I’ve co-authored a fast start checklist with Tina Dyches, Ed.D that outlines the steps to take right before and after diagnosis. It’s geared toward Utah residents, however, it can be adapted for most other states as well. You can find it here.

Maw Books:  Tell us about Clay’s Law and how you have become proactive within the autism community.

Leeann Whiffen: Way back when Clay was diagnosed, I made a commitment that if I were ever to get to a point where my life wasn’t consumed with overseeing and administering his therapy, I would get involved and try to make it easier for other parents to access vital resources. Since then, I’ve been continually active in the autism community through my own efforts or various organizations.

In the Utah 2009 legislative session with the help of Senator Howard Stephenson, we introduced an autism insurance reform bill, Senate Bill 43, or Clay’s Law (named after my son). This bill would have stopped the discrimination from private insurance companies in Utah for diagnosis and treatment of autism spectrum disorders. Ultimately, it didn’t pass, but we plan to keep pursuing autism insurance reform and continue to explore solutions that help families gain access to evidence-based treatment. In pursuing Clay’s Law, I co-founded and serve as the president of the Utah Autism Coalition, a grass roots, non-profit group comprised of over 700 parents and professionals throughout the state of Utah. We will soon be taking applications to assist parents in funding evidence based treatment programs.

If you’d like to donate to our group (in which your funds go directly to help and support our local autism community), please visit www.utahautismcoalition.org.

Maw Books:  How in the world did you find the time to be a mother to three sons, a wife, a passionate advocate and write a book at the same time without seriously losing it all?

Leeann Whiffen: Who says I haven’t lost it? First, I have an extraordinarily supportive husband (who is also well known for giving surprise super wedgies while in a heated game of “tackle Dad”). Second, determination. Third, perseverance. Our family motto is Numquam Cede, which we had made into a sign and hangs above our pantry. It’s Latin for “never give up.” I expect everyone in our family to adhere to that philosophy. One can never expect success unless they’re willing to try, and try again. Hard.

Maw Books:  What has been the most memorable experience that you have had from reader reaction to your book?

Leeann Whiffen: This is a tough question because I’ve received moving feedback and personal stories from all over the United States and the world including South Africa, Macedonia, Bermuda, and Ireland to name a few. In fact, this may sound lame, but I keep all of them in a special file. There’s something about being an author and getting feedback from your readers, telling you that your book touched their life in some way.

Here are some that left an indelible impression:

- I lost my husband on 9/11. He was a firefighter, and I never thought it would be possible to experience the despair and sadness that I felt after that happened. For the first time since then, I feel that way. I’m hoping you can pass on your strength.

- I’ve decided to dedicate my life to find either the cause or cure for autism (10-year old girl)

- We are starting to get our little boy back because of your book

- You make us cry a lot, but you give us hope.

- I’m a junior majoring in special education. Before your story I was set on being a second grade teacher, but now I’m so inspired to learn more about helping children with autism.

- I’m re-reading your book for inspiration. It gives me more strength to carry on.

- Having been raised in the tough streets of Sydney, Australia, I can tell you that I was in tears after reading the section when Clay was reassessed.

- I’m re-energized. I don’t expect recovery, but you’ve given me renewed energy.

- I’m a preacher’s daughter, and I normally don’t speak out like this, but you’ve inspired me to work with kids and families affected by autism.

- Whenever I feel sad, especially deep in the night, I will read a few pages from your book, and it consoles me.

- I live in Russia and we don’t have any of the therapies or resources you mention in your book. Pediatricians and neurologists say there’s nothing we can do. But you gave me hope that my son can recover and I’ll do everything I can to educate myself.

Maw Books:  Those are beautiful.  What are your boys favorite books to read right now?

Leeann Whiffen: Clay is a huge Fablehaven fan. When book five came out, Clay would get up an hour before school to squeeze in as much reading time as possible. He finished it in two days. Brandon Mull, if you’re listening, Clay’s dying for Candy Shop Wars II, so could ya hurry it up already? Brandon’s practically our neighbor and we didn’t even know it until we were at a book signing and he asked where we’re from! My oldest, Drew, has loved and read all of the books in the Percy Jackson, Lightning Thief series. Judd, my five-year-old loves the book I Love You More and tells me daily (in keeping with the theme of the book) that he loves me more than the greatest lego structure ever made.

Maw Books:  And you?  What’s the last book that you loved that you would recommend?

Leeann Whiffen: I would be dishonest if I didn’t say that the last book I read and loved in a way only a mother loves a child is The Help by Kathryn Stockett. (Oh, how I wanted instead to tell you the name of some obscure literary treasure that practically no one knows about.)

The book that has changed my life is On Becoming Fearless by Arianna Huffington.

Maw Books:  I know you are so excited to see Kathryn Stockett next week while she’s on tour here in Salt Lake City.  I can’t go *sob* so you must tell my everything! Do you read books that feature autistic characters?  Any that you were particularly impressed with?

Leeann Whiffen: I don’t read books that feature autistic characters anymore than I read any other book. However, Mark Haddon’s The Curious Incident of the Dog in the Night-Time was extraordinary; it’s one of the most creative novels I’ve ever read right down to the simple, sporadic illustrations. The voice and character development of Christopher, the high functioning autistic teenager, was spot on.

Maw Books: Did you learn anything about yourself while writing this book?

Leeann Whiffen: I’ve emerged from a shy girl raised on a small ranch in Idaho to a fearless woman who believes that monkeys occasionally do fly out of butts.

Maw Books:  You’ve got me laughing now! What do you believe the secret to happiness is?

Leeann Whiffen: The secret to happiness for me is the following: 1) social interaction and relationships. I’m more of an introvert, but if I don’t consciously work to spend a certain amount of time with friends or family, I start having symptoms of PMS. 2) being a part of something much bigger than myself – altruism 3) doing something new and novel. This is often scary and difficult, but necessary to grow and push myself in different directions.

Maw Books:  And I’m sure one of the most often asked questions you receive, but I can’t help asking myself.  What’s Clay like today?

Leeann Whiffen: Are you ready for what will sound like the world’s worst family Christmas letter? Clay recently took first place at a state gymnastics competition, and sixth nationally. He also the chess tournament in his fourth grade class and is at the top of his class academically. His teacher has even assigned him to tutor a couple of his classmates. He has lots of friends and loves playing “speed” (a basketball game) during recess with his buddies. Best of all? He has one of the most optimistic personalities of any kid I know. When I’m in a crappy mood, I just go talk to Clay and I remember why life is so good. He cheers me on with school and my advocacy efforts. He cheers his brothers on. He sets goals and works hard to achieve them. One day he came home from school and told me that he sat by the boy at lunch who doesn’t have any friends. Our downfall? We like to sing “Telephone” by Lady Gaga in the car together, but I realized the other day that we just sound like dogs howling at a fire truck.

Maw Books:  How awesome is that?! Any last words that you would like to share?

Leeann Whiffen: One of my favorite authors, Jeanette Walls (The Glass Castle, Half Broke Horses) said once, “The shame is not in falling, the shame is in staying down.”

Maw Books:  Beautiful.  Thank you Leaann!

Links of interest:  Leeann Whiffen website, blog and Twitter.  Maw Books review of A Child’s Journey Out of Autism which is available from your favorite independent bookstore, Powell’s, and Amazon.

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