Recommended resources, tools and materials of note.

Adonya WongAs a parent to a child with autism, Adonya Wong understands the unique challenges and rewards that responsibility entails.

As an author, Adonya hopes to share that experience with others affected by autism and those wanting to learn more about it.

Her first book, In My Mind: The World Through The Eyes of Autism, creatively explores the inner world of an autistic child  through the form of a children’s picture book.

From exciting adventures to silly games and conversations with imaginary friends, the main character of the story — inspired by Adonya’s son, Nicholas — brings readers into his world.

In doing so, he demonstrates how one child with autism sees the world, and, in turn, how the world often sees a child with autism.

Adonya’s motivation for writing her book stemmed from the realization that there was a scarcity of literature directed to and written for autistic children and their families.

In My Mind was written to help raise awareness about autism, and she hopes that the reader will gain a deeper sense of compassion and tolerance for those “different” than themselves.

To help promote her book, Adonya has  launched a “Globe Trottin’ for Autism” vrtual book tour starting on January 19 and concluding on January 29, 2009. During the tour, 11 different blogs will promote In My Mind and feature her answers to questions about life with autism, writing, the publishing process, and discussing future projects.

Along with insightful interviews, you can read reviews of In My Mind and listen to an audio interview by Autism Hangout. To learn more about the book you van watch the following video:

I came to know Adonya during the December 16, 2008 Autism Twitter Day. As a result, I was invited to participate in this unique marketing initiative. This blog entry represents day 2 of the 11 scheduled stops.

As part of my participation in this unique event, I had an opportunity to ask Adonya some questions. I asked her about issues relevant to the themes of this blog: social media, education and autism (an issue of great personal significance to me).

Below are my questions and her answers — please feel free to post any questions you might have for Adonya in the comments section of this blog:

1. Tell me more about your son, Nicholas: what does he like to do, what are his strengths, what are his dreams? In what ways is Nicholas an inspiration and teacher to you?

Nicholas is an avid reader and quite the talented artist.  We go through about 6 Doodle Pros a year, so, hopefully, Fisher Price will see this post and send me vouchers once a month or quarter.  He also enjoys the computer to the point where, some nights, he gets a little teary eyed when told to shut it down.

Early last year, I stumbled upon a nifty little application, Zac Browser, and it has really opened up the Internet for him in ways I couldn’t have imagined.  The creator, Jon LeSieur, has a grandson on the spectrum, and he developed this application to simplify his web experience, thereby, making it more enjoyable for him.  I’m grateful he decided to share it with the world.  I highly recommend it!

I wish I knew what Nicholas’s dreams were.  He doesn’t always speak conversationally and his cognition of such a complex question is a bit low.  Whatever his dreams may be, I’m sure they’re grand.

I credit Nicholas for being my grounding source.  I feel that his presence in my life has made me more patient, tolerant and empathetic of others.  With every new day, I learn to just “be” and go with the flow.

He often tells me, “It’s okay, Mom” as he wraps his arms around me, and it is in these moments that I truly know that everything is going to be okay.

2. In what ways do you think you book can be used to educate and inform people not affected or touched by autism about what it is like to live with a diagnosis?

I initially didn’t write the book to educate folks since being a writer wasn’t even anything I was contemplating at that time in my life.  I didn’t even realize I had a story in me until I finished typing out the words to In My Mind.  The book, literally, came to me in a flash.  Some would say it was Divine Intervention!

As for me?  Couldn’t really say, but apparently, I am supposed to share my life’s experiences which is why I’m here today, talking about my first published work.

The book has been read by several people not “living” with autism and based on their responses, I can say that my book is shedding a different kind of light on the mind’s of those looking into our world.  In My Mind is a perception-based book.  People are often too quick to judge what they see without looking for the deeper/hidden meaning behind someone’s actions.

It is my wish that my book will get folks to stop the judgments and be more accepting of those perceived as being “different” than themselves.

3. What role did social media play in the production and/or promotion of your book: did you use any specific websites/services to develop ideas for your book and which websites/services are you using to market your book?

Social Media has played a huge part in promoting my book — it seems to be the current trend in getting people to notice you or your accomplishments.  Shortly after I received word that my book would be published, I put up a presence on MySpace and Facebook.

I have since added several Ning networks (most of them dealing with either writing/published authors and autism) to that list as well as Twitter (which is how I met you, my friend).

I also have a website that I put up shortly before the book’s pre-release.

4. For the aspiring published authors out there (myself included), describe the process by which you found and were signed by your publisher. Also explain what the writing and production process was like — in what ways was the Internet part of that process?

Finding a publisher was easy.  Although, I didn’t choose the self-publishing route, I did get signed on by a Print-On-Demand publisher.  Getting published the traditional way meaning going with a well-established and widely recognized (by way of their name) publisher requires money (finding a literary agent) and, oftentimes, years of walking the grounds.

My publisher has lowered the percentage of manuscripts they choose for publication from 4 to 3.5%.  My experience with them, so far, has been positive.

My suggestion to an aspiring author is to get your story on paper.  Then join groups like Critique Circle and get others to mull over your work.  Now, this is not something for the faint at heart.  If you’re someone who doesn’t like criticism in any form, I suggest you choose another path.

Anyhoo, some of the members of Critique Circle are editors, and I’ve read of a few people getting signed because of their relationship with these folks via this platform.

I didn’t use the internet to help me with my book as I am living with someone on the spectrum.  I had my everday experiences to fuel my writing.  Children’s fiction is my genre of choice, and I don’t anticipate having to do any “outside” research for any of my work.

I recently purchased a book by successful self-published author John Kremer titled 1001 Ways to Market Your Books.  I am also a member of his Ning network, Book Marketing.

5. Will the book have any kind of online companion presence, perhaps a resource site for parents and other interested individuals?

My website is a work in progress.  However, I do offer links to sites that have been helpful to me over the years.  I will be updating it soon with writing/publishing information.  But I anticipate that happening after my site goes through a redesign. I will, however, be adding worksheets for children that I hope will stimulate their imagination and encourage them to follow their dreams.

Special thanks to Adonya for writing her beautiful book and including this blog in her Virtual Book Tour!  If you have questions of your own about In My Mind, please leave them in the comments section of this blog, below.

Also be sure to visit the next stop on the Virtual Book Tour, The Bon Bon Gazette, where Adonya will answer additional questions.  While you’re there be sure to place your daily entry for her giveaway.

To enter, simply comment about your relationship with autism, what you are doing to raise awareness, and how In My Mind has touched your life. Be sure to visit all of her stops to qualify for this amazing prize!

One lucky reader will win a gift basket containing an autographed copy of In My Mind, a copy of Ten Things Every Child with Autism Wish You Knew, packages of Enjoy Life™ and Namaste Foods™ goodies, an eco-friendly cleaning starter kit (Whole Foods® 365™ brand), and (1) $50 Amazon.com gift card!!  This prize is valued at $200!!!

To learn more about In My Mind and what it’s like to live with autism, visit Adonya’s website or her blogIn My Mind is available online at Amazon.com, Books-A-Million.com, Borders.comTarget.comTate Publishing and coming soon to a bookstore near you! Note that a portion of the author’s proceeds benefit Tulsa Autism Foundation.

You might also want to visit the other stops on the Virtual Book Tour:

So, what’s in your mind about autism now?

According to a recent post on LifeHacker.com, Microsoft is now offering the “Ultimate Edition” of it’s Office Suite at an amazingly discounted student price of $59.95 (a 91% discount off of the $680 retail price).

The post, which is excerpted below, references an official Microsoft Press Release explaining the details of this offer and related programs also available to students at a reduced rate:

Microsoft yesterday re-introduced its “Ultimate Steal” program, offering students (but, in reality, anyone with a .edu address) its Office Ultimate 2007 package for $59.95, which goes for $680 on retail shelves. The company will also put up its Visio Professional 2007 design package and a Vista Ultimate Upgrade at the $60 price on Sept. 8. The web-only offering will be available “throughout the academic school year,” according to a press release, but if you haven’t already hit up your alma mater for an alumni .edu address, now would be a good time to get to it.

Often when software is “academically priced” it is a minimized version of the program you need, or in some cases a suite like Office is missing key programs.

However, in this case, the “Ultimate Edition” seems to have everything a student (or even a teacher!) could want.

As indicated on the Microsoft website, the following programs are included in the Office Ultimate Edition:

  • Access 2007
  • Accounting Express 2008
  • Excel 2007
  • InfoPath 2007
  • Groove 2007
  • OneNote 2007
  • Outlook 2007 with Business Contact Manager
  • PowerPoint 2007
  • Publisher 2007
  • Word 2007

There are various criteria you must meet in order to take advantage of this deal, but if you do, then why wait? Click here to place your order or vist http://www.microsoft.com/student/discounts/theultimatesteal-us/default.aspx.

Last Wednesday, April 2, 2008 marked the first annual “World Autism Awareness Day.” The day was created by the General Assembly of the United Nations which voted in November 2007 to establish the annual event date as an opportunity for Member States to raise awareness about children with autism.  Various events and lectures were planned around the globe and CNN scheduled all-day coverage about autism. April is also National Autism Awareness Month.

Autism Awareness RibbonWhat is autism? According to the Autism Society of America, “Autism is a brain development disorder that impairs social interaction and communication, and causes restricted and repetitive behavior, all starting before a child is three years old. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.”

Autism is one of five disorders considered a Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by “severe and pervasive impairment in several areas of development.”

These disorders include: Autistic Disorder, Asperger’s Disorder, Childhood Disintegrative Disorder (CDD), Rett’s Disorder, PDD-Not Otherwise Specified (PDD-NOS). Each disorder has specific diagnostic criteria which been outlined in the American Psychiatric Association’s Diagnostic & Statistical Manual of Mental Disorders (DSM-IV-TR).

Diagnosed in an estimated 1 in 150 children, autism is the most common Pervasive Developmental Disorder, and the numbers are on the rise. It is estimated that as many as 1.5 million Americans have some form of autism.

Data from the U.S. Department of Education and other governmental agencies indicates that autism is growing at an alarming rate of 10-17 percent per year — and the Autism Society of America estimates that 4 million Americans could be diagnosed in the next decade.

Below are some additional facts about autism, courtesy of Autism Speaks, an advocacy group:

Basic Facts

  • 1 in 150 children is diagnosed with autism
  • 1 in 94 boys is on the autism spectrum
  • 67 children are diagnosed per day
  • A new case is diagnosed almost every 20 minutes
  • More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
  • Autism is the fastest-growing serious developmental disability in the U.S.
  • Autism costs the nation over $90 billion per year, a figure expected to double in the next decade
  • Autism receives less than 5% of the research funding of many less prevalent childhood diseases
  • Boys are four times more likely than girls to have autism
  • There is no medical detection or cure for autism

Incidence vs. Private Funding

  • Leukemia: Affects 1 in 25,000 / Funding: $310 million
  • Muscular Dystrophy: Affects 1 in 20,000 / Funding: $175 million
  • Pediatric AIDS: Affects 1 in 8,000 / Funding: $394 million
  • Juvenile Diabetes: Affects 1 in 500 / Funding: $130 million
  • Autism: Affects 1 in 150 / Funding: $15 million

National Institutes of Health Funds Allocation

  • Total 2005 NIH budget: $29 billion
  • $100 million goes towards autism research
  • This represents 0.3% of total NIH funding

Autism has clearly become the polio of our time and something must be done to reverse its progress. If we don’t act now and dedicate more research dollars to finding a cure and treatment, while also finding a way to convince the health insurance industry to cover the costs associated with treatment we run the risk of losing an expontentially increasing percentage of this generation’s children to autism.

The impact of autism on families is extensive. Emotionally, it can be draining. Mentally it can be consuming. Physically it can be exhausting. Financially, it can be devastating. In addition to the divorce rates of parents with autistic children being higher than the average, many families of children with autism struggle to avert bankruptcy.

It’s no wonder, the costs involved are daunting: from the early intervention and treatment services (which only a handful of states cover) to the lost income from one parent in a two-parent household who must stay home with the affected child while services are provided, autism affects an entire family, not just the individual overcoming it.

Raising a child is stressful enough — raising a child with autism is beyond compare. That is not to say that raising a child with autism is totally unlike raising a “neurotypical” child, it just puts things within a different framework.

I speak from personal experience: my older son, Jacob, who will turn five this September, was diagnosed with autism just before his third birthday.  We have come a long way since then, but still have far to go. He is now speaking contextually, exhibiting emotion and is full of boundless energy. Some days are full of joy while others are full of challenges parents of children without autism truly cannot comprehend.

Fortunately Jacob is on the higher functioning end of the spectrum and has many skills that a typical child near his age has (though developmentally he is not functioning at a level consistent with his chronological age). He is a sweet and smart little boy with a curiosity about the world and great potential to do wonderful things with his life.

We are grateful for the services he has received and credit them with a great deal of his progress so far. However, we have also had to aggressively advocate on his behalf to ensure he continues to receive the services to which he is entitled.

Jacob currently receives his applied behavior analysis (ABA) services through the Center for Autism and Related Disorders (CARD) — a worldwide leader in the field founded by Dr. Doreen Granpeesheh. His Individualized Education Program (IEP) is coming up in a month and my wife and I are beginning to prepare for battle with the Saugus Union School District to ensure that he receives the most appropriate and beneficial services.

As a father, Jacob has taught me many lessons about life. but I know I have much more to learn. I now appreciate the small steps in life and applaud incremental improvement, however small, because it represents movement in the right direction. I admire his sweet and loving disposition and marvel at his unbridled joy and creativity. He is a wonderful little boy who has inspired me to become a better father and, frankly, a better person.

For additional information about autism, I encourage you to visit the following: