Life with Autism - From the Inside

Autism (low, mid, and high functioning),
Asperger's Syndrome (AS), and PDD-NOS

My son Cameron in 2000 when he was just under 6 1/2 years old flying through
the air with the greatest of ease, while I lay in the sand taking the picture. :)

"Every child is gifted. They just unwrap their packages at different times." -- Unknown

My son Cameron, 22 years old now, was diagnosed with Asperger's Syndrome in November 2005 when he was 12 years old. Through all of my research I now know that he should have been diagnosed with Autism before he was 3 (my daughter, couple years older, should have been too).

Important Info

Information about the removal of "Asperger's Syndrome", "Pervasive Development Disorder - Not Otherwise Specified (PDD-NOS)", and "Autistic Disorder" from the DSM-V Psychiatric Manual and rolling of it all under "Autism Spectrum Disorders (ASD's)", and the effect it has on this website.

When I started my research (I try to read at least one thing about Asperger's and Autism every single day) I found that there was very little information available.

There were a few websites with "clinical" descriptions and definitions of Asperger's Syndrome but nothing "from the trenches", no personal experiences that I could find that might help me with our own day-to-day.

So I started putting this website together back then. I figured that maybe by doing this (writing about our own experiences) I might be able to help some other parents and caregivers of those on the Autism Spectrum.

Even as recent as today I am still learning the significance of those things, past and present, and even today I still get "hit between the eyes" with things that happen.

Maybe with this website I can spare other parents and caregivers some of the heartache I went through while trying to work with, and help, my son ... and maybe you'll have ideas that have worked for you that might work for me (I'd LOVE to hear any ideas or suggestions anyone has). :)

I'll be doing many things here that I hope will help you...

If you want to read about something that I don't have here, please do not hesitate to contact me.

The Prevalence Of Autism Spectrum Disorders

When I started this website in 2005, when my son was diagnosed with Asperger's Syndrome, I believe the numbers were approximately 1 in 150 children on the spectrum (I don't know that I have that number exactly right).

In 2006 the CDC changed the numbers to be approximately 1 in 110.

Then another study in 2012 found that 1 in 88 children (diagnosed prior to 8 years old) is on the spectrum.

How much worse would those numbers truly be if they were to take into account children and adults who were diagnosed after age 8?

Well how about this...

Around March 2013 the CDC came out and said that 1 in 50 children (between the ages of 6 and 17) were diagnosed in 2011/2012. If your child was diagnosed before 2011 and was over 8 years old at that time, he/she is not included in the "1 in 50" count.

That's not an overall estimate of how many people are on the spectrum, that "1 in 50" is strictly the number of children between the ages of 6 and 17 that were diagnosed in 2011/2012 alone.

Is Your Child Included In The "Count"?

Technically, unless your child fits the criteria for the 2012 study (under the age of 8) or the March 2013 study (between the ages of 6 and 17 and diagnosed in 2011 or 2012), then he/she (my son as well) isn't really "counted" at all when it comes to the number of people on the spectrum.

Add the "1 in 50" to the number of children that were diagnosed in every year prior to 2011/2012 (but not counted because they weren't diagnosed in 2011/2012), and then add that to the number of those over the age of 17 that have been diagnosed (but not counted because they're over 17), and then add that to the number of all those (young and old) that haven't been diagnosed yet but should be, and the numbers are explosive!

When I say "young and old" I'm talking all the way up to 60, 70+ years old ... I was diagnosed in early 2013 and I'm 50 (I saw it in myself through the research I've done).

The numbers are kinda scary when you start considering all those who haven't yet been counted so to speak...

I then found an article that stated that the numbers were now 1 in 47 children on the spectrum and then just a couple days after the CDC said 1 in 88, the USAAA sent out a newsletter stating that the Salt Lake Tribune had a front page article that the rate is 1 in 32 children.

Why Such A Rapid Increase In The Numbers?

There is some evidence to show that the ever increasing numbers could be due to the fact that it's being recognized and diagnosed in kids ages 6 to 17 (but especially children 6 to 13) who should have been diagnosed when they were younger.

The greatest increase in numbers was for boys (males are four times more likely to get Autism than girls), and adolescents aged 14 to 17 which, if correct, does fall in line with the statement above about kids now being diagnosed that should have diagnosed years earlier.

I do also personally believe that there are more and more children being born today who will be afflicted by an ASD and those numbers will continue to rise until they figure out what's causing it and slow it down.

Why Do Boys Have A Higher Autism Rate Than Girls?

Several years ago, sometime during the first half of 2009 I believe, researchers found a new gene that they referred to as the "autism-gene" and they named it CACNA1G.

It was shown that the gene is more prevalent in boys than girls although they were unable to determine why it's more prevalent in boys.

While a large percentage of the population carries the gene, it's a variant of the gene that the boys with autism have.

But they do caution their statements by stating that it isn't the only gene involved, that there are many.

Let's Help Each Other

If you know of special items out there that can help others on the spectrum please tell me so that I can post about it here.

I'm hoping that by including our own experiences and challenges and successes, that you will be able to pick through it and find things that help with your situation. :o)

If you have any questions or comments or need any help with anything please do contact me and I'll do all I can to help, even if you don't have questions but need someone to talk to or unload on.

Come with me and let's travel this journey together so that we always have someone to lean on; someone to laugh with; someone to cry with; someone who knows and understands the things that those without experience with Asperger's Syndrome will *never* understand; someone who understands and loves our children, and us parents, unconditionally...

Diane :)

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Book Reviews

I'm so tickled that authors have been contacting me and asking me to review their new books for them!

Please contact me if you'd like me to review yours. :)

Fiction, Non-fiction, Auto-Biographies, Instructional books, etc., I'm interested in them all. :)

For as much time as I spend researching Asperger's Syndrome this website should have thousands of pages but because my son has Asperger's Syndrome I find that the things I want to work on very often are not the things that I have to work on so I'm still not able to spend as much time on it as I'd like to.

As he heads into adulthood (he turned 20 on Dec 13 and yep I need to update some areas of the website where it has his age) I'm finding that I have even less time on my hands as I spend more time trying to master the puzzle of how to help him transition into "life after high school".

That's where Autism Tomorrow: The Complete Guide To Help Your Child Thrive In The Real World comes in.

It's a guide to help your kids after high school. You'll find parts of the book will be applicable and some won't depending on your child's current age. Although the title implies "Autism after high school" there is still quite a bit in there about what to do help prepare your child for "real life".

It's a great book!