Hi Cliff, I suppose I could write another book about how I got into this. It began in 1994 after my fourth child, Jonny, was diagnosed with autism. To make a long story short, I decided to write a book to help my son and others like him understand what is commonly known as "the invisible disability". "Little Rainman", written through Jonathan's eyes, has been sort of an "operations manual" to help teachers, siblings, peers and even Jonny along the way of his autism path by helping them recognize the early warning signs of autism. Published six months after completion, "Little Rainman" has sold over 10,000 copies worldwide. I have included my bio for further detail in answer to your question number six.

1) b. Is the situation really that bad out there, in terms of reliable information and resources dedicated to autism?

There are a lot of different resources out there, Cliff, if people just knew where or when to look. The problem is that this is such a debilitating disability, which more often than not, consumes most, if not all of the parents' time and money! If parents are fortunate enough to first recognize the warning signs, then get past their denial of the possibility of autism diagnosis, and on top of that, get past the waiting list (can be up to 2 years in some areas!), and finally get the child into an early intervention program, before the age of five, then their chances of a better outcome increase ten fold! Of course, some might say it's easier to thread a needle while riding horseback!

Since I have been involved in this field, I have heard the incidence of autism figures that affects individuals in a range from 1 in 10,000, which is a very old figure all the way down to 1 in 150 and usually 1 in 500. Of course, the former figure is way out to lunch but certainly must reflect the inability of some to recognize and diagnose this disability. The latter figure more accurately describes those more knowledgeable about the diagnosis coupled with the more recent "added" diagnosis of Asperger's Syndrome, a form of high functioning autism. Additionally, it is believed that environmental issues, and possibly a genetic predisposition, are contributing to the increased incidence of autism.

Once the diagnosis has been made and the child is in the program that he/she needs to be in, the real work begins. Since an estimated 50% of those with the diagnosis of autism are non-verbal, communication issues are extreme. Imagine, if you will, never hearing your child utter a single word! I'm very fortunate that my son, Jonathan, is higher functioning and able to speak, although his communication skills have been challenged all along.

Along with the difficulty of communication comes major behavioural challenges such as tantrums, head-banging, biting, aggression and so on. It's a wonder the parents and children survive at all. I'm sure if I was unable to speak I would be extremely frustrated trying to get my point across too!

Bullying is also becoming a bigger issue that these kids face each and every day. I am fortunate in that Jonny can at least speak up for what is happening to him because he is high functioning. I have taken the liberty of including a "letter of apology" he was asked to write to the bus driver when he deliberately poked holes in the bus seat. I was tickled to see that he included what led up to the incident. Though his feelings don't excuse his behavior, they certainly explain it! I'm not sure what happened to the other boy on the bus but Jonny got suspended for three days. This type of incident occurs more often than we care to think. What we ultimately did was to write a statement for Jonny to let him know that he is not a victim. I'm glad Jonny can be the voice for so many that cannot articulate as he is able to.

May 17, 2001

Dear Pat,

I am sorry for the seat, but I got angry because of Nicholas Crock, because he's annoying me sometimes (99.9% of the time he is) and he's on the first bus I get on to go to school. He throws leftover chocolate Jello pudding (in a container with holes on the lid) at me when he's getting off, and it gets my clothes dirty (mom doesn't want me to wear dirty clothing). While he's on, he and his friend gang up on me (and, occasionally, tell other big kids to do it) and they occasionally move from seat to seat to get at me! They move ahead, one pair of seats at a time, bonk me on the head, and rush back to their seat. Fortunately, his buddy had to move to the front seat. And sometimes, still in their seats, they throw assorted junk at me (jello pudding, paper balls, etc.) sometimes they miss. He sometimes says I live in a garbage dump, a cardboard box, and on certain times he calls me "gaylord," gay not meaning happy. Matt told me to say "gee, thanks, I'll remember that!" when Nicholas says I am a gaylord. He sometimes swears. The one kid I saw and liked in his family was Nicholas's kid brother! Since I can only sit in the 4th seat or further up, I'm a supreme target. Fortunately, they have never stolen my lunch yet. The reason I made those holes was because I needed to do something to release my tension. Mrs. Lorenz and I talked about what I could do instead of damaging other people's stuff.

Sincerely
Jonny Sicoli

Many of these kids are acutely sensitive as if they are like little "Supermen" with super sonic hearing. Imagine hearing someone speaking in the building next door to you and of course picking up all the sounds in between, or walking barefoot and it feeling like you're walking on cut glass. No wonder these kids get stressed and act out! Sensory integration therapy seems to be one way to help these children cope with their hypo or hyper-sensitivity issues.

When parents are having to deal with the above described child, and especially if they have other children, it doesn't leave much time to learn where to look for resources, go to support groups, or advocate on behalf of their child's needs. Many times, the resources available for the intensive one-on-one support these children need is just not available. Though the costs associated with ultimately placing these children into institutions is far higher than proper resources in the first place, many politicians and government agencies don't subscribe to this forward way of thinking. This philosophy cripples the individuals, their families as well as society in general.

The reason Autism is known as an invisible disability, is people with autism are usually very good-looking, normal appearing individuals. It makes it much more difficult for the average, unknowing, person to see the disability since they are not in a wheelchair or carrying a cane. That's why people generally expect normal behavior, language and especially social skills in public, not always what they get.

I'll never forget the time I went to an Autism Society function, sat with a table of adults who were all very polite and appeared very normal. When it came time to open the dance floor, one of the grown men from our table went to the dance floor and began jumping up and down in a squatting position just like a giant leapfrog. I had to contain myself from laughing out loud as I never would have expected this behavior! What an eye-opening way to introduce a new parent to Autism!

In other cases, I've heard that one individual with Autism was peeking into a house window out of his own curiosity. Of course the people phoned the police, which resulted in the officer restraining the man. He fought against the officer who to him was a stranger and had been taught not to trust strangers. This caused him to have a seizure, which led to his ultimate death. Of course, this is a very severe case, but the point I am making is that all people need to be made aware of these signs of autism while developing a sensitivity to their issues. After all, we are all human beings that need to be loved, nurtured and respected in our civilized society.

2) One of my other jobs is web editor for a national disability organization, and I've seen a lot of great websites...and a lot of bad ones. Yours is extremely good. Naturally, I don't know how often the content is updated, but I suspect your site is one of the best in the world. Care to give me a modest comment?

Thank you so much for the complement! I will try to be modest. We are working very hard to make our site the most user friendly, informative, single source for autism related information in the world. We actively change the site to provide quality information and have many interactive opportunities for parents, professionals, educators, teachers, siblings and people with autism so we can bring them back again and again. We want it to be the one stop shopping center for everyone in this specific field including Autism, Asperger's Syndrome and related disorders. We strive for the best because that is what will bring people back. The information that we are actively collecting will help many people worldwide to find treatment options and models, locate ongoing conferences, locate resources, discover early intervention tools and strategies and provide a method of targeting candidates for potential research in the autism area. Even people with autism will have a way of expressing their unique talents and abilities while finding friends with similar interests online. Our goal is also to raise awareness of autism and their issues so that all people know, recognize and are sensitive to their needs. This we will accomplish through our global, innovative community network. This portal site is and will continue to be a world leading fun, entertaining and informative source for all!

3) What's the best thing you could achieve by building this resource? In other words, what's your ultimate goal?

I hope to raise global awareness of autism, Asperger's Syndrome by becoming a vital and strong central global portal.

Our ultimate goal for AutismToday.com would be to have the largest, most informative and professional, viable, self-sustaining, interactive worldwide resource center for autism and Asperger's Syndrome. This vehicle is for those people associated with this field as well as those wanting to gain understanding to exchange information and learn about what's happening with Autism. In other words, the autism news. Our objective is to bring the traffic to this central site for all to know and learn. There are no limits to the information sharing that will take place. We also want to develop an online community dealing with autism and encourage people to share their stories, art poetry and experiences.

4) How can people get involved or make contributions?

Every parent, sibling and even teacher has a heart-warming story to tell about the child in their life with Autism. Because these kids are so literal rather than abstract in their thinking, often times they come out with the most "Art Linkletterish-Kids Say The Darndest Things" material. One goal we have is to publish one such book of stories. We have a place online for anyone to submit these stories along with their permission for us to use their story. We have polls, contests and fun interactive tools for everyone. We hope to set up a pen-pal connecting service for kids with autism as well.

Of course, we are the perfect vehicle for companies selling autism related products to get the word out about what they offer. These companies might sell books, tools, toys, or offer services. Societies and other organizations can list their conference information at no charge for upcoming conferences on our sister site, AutismConferences.com. This site also has an option for coordinators to purchase gateway pages for their conferences or events. Many other advertising opportunities are unfolding daily.

Another area of contribution that will make all the difference in the world is that potential authors may have their work published online, eliminating most costs associated with the publishing process such as printing costs, acceptance from publishers, expensive agents and so on. They also gain the added benefit of having a target audience that are already focused in this field. If the potential author is approved by our review department, they will earn a substantial royalty on all of their book sales. What better way to find the unique talent, heart-warming stories and unique strategies experienced people have to offer that would not be available in any other format. From first hand accountings to successful treatment techniques, we cannot think of a better way to educate the world.

Right now we are organizing a downloadable online toolkit for parents and educators to use. It will initially include four areas as follows: social stories, facial expressions, behavioral strategies and communication ideas. We invite people to submit their material right away for any consideration along with any comments to info@autismtoday.

5) Anything else you'd care to add?

We are hosting our second annual "Keys To The Treasure Chest" conference November 16 and 17th in Edmonton Alberta. I will attach an invitation so you can choose what to add. I will attach it in Adobe but if you need a different format, let me know.

Please be sure to include our other sites: AutismConferences.com (largest online registration and database for autism and related disorders conferences, lectures, workshops and events) and ExceptionalResources.com (largest selection of autism related publications)

6) Some details please...how long you've lived in Edmonton, your working background, anything you'd like to add.

I've lived in Edmonton since 1984 and have included a bio:

Karen's bio
Born in Oklahoma, in 1951, Karen L Simmons had her first book published in 1996. The book, Little Rainman, Autism Through The Eyes of A Child was written to raise awareness about the early detection signs of autism and has sold over 10,000 copies worldwide to parents and educators of these special children.

Karen was raised in the south, joined the U.S. Air Force in 1970 and received an honorable discharge in 1974. She then moved to the West Coast to become a Gemologist in 1976. Upon graduation, she began her own company, The Gemologist, in Bellevue Washington and ran it until 1981 when she met her true love Jim Sicoli, from Canada and moved, sight unseen, to Edmonton, Alberta Canada. In 1997,following the birth of her sixth child, Karen almost died. She was given less than a one percent chance to live and even given her "last rites". This "Miracle Lady" , as she was eloquently referred to by the hospital personnel, was called back to life through the love and care of a very special group of people.

Karen still lives in Sherwood Park, just outside of Edmonton, with her six children and husband, her true "gems". She is also the owner of Exceptional Resources, Inc., an exclusive Canadian distributor of over 150 titles on Autism, Asperger's Syndrome and related disorders.
 
Just recently she launched two new businesses online. She is now the editor of one, an online magazine called AutismToday.com, As well, she runs a conference listing service called AutismConferences.com and is the founder of the KEEN Education Foundation. The mission of KEEN Education is to build a life for children with exceptional needs to ensure that they receive support, equipment, services and education that lead to the fullest possible individual development and social inclusion. Karen is also an international presenter and has been featured in international publications such as "Woman's World".