Tuesday, October 9, 2012

Understanding Autism

I’ve learned a great deal about Autism in the last month.  At the age of 3 my son received a diagnosis for Pervasive Developmental Disorder – Not otherwise Specified – he falls on the Autism Spectrum.  Since then we have learned so much about how my son ticks, and continue to acquire information on how to aide in his growth and development.  

On September 10, 2012 we made a huge step forward.  Together with my sister (who was visiting from Spokane, Washington) and my two small children we packed up the car and left Daddy at home for a two week adventure.  I kept the kids in their jammies, hoping they would fall back to sleep (since we headed out at the crack of dawn).  They were wide awake – up until the last thirty minutes of our trip.  At 8:00am we pulled up to Lifeskills: Touchpoint Autism Services and with a pounding heart all four of us entered the building.  I stood in amazement as my three year old daughter and her five year old brother cheerfully walked into the respite playroom and waved goodbye to my sister and I.  

We headed toward the conference room where we were greeted by two other mothers, our trainers, and a HUGE binder.  By the end of the two weeks that binder would be filled with information, and so would my brain!!!!

I look forward to sharing my new found knowledge here on my blog.  The best part is that I have found another wonderful way to incorporate literacy in helping my son through his daily therapy sessions.  What a wonderful world we are living!!!

Did You Know

Did you know that the CDC estimates that 1 in 88 individuals are diagnosed with an Autism Spectrum Disorder?  I didn’t.  I also didn’t know that it is five times more frequent in boys than in girls – which may account for the fact that at our training session there were no girls.  Did you know that each year the numbers are growing by 10-17% and that 67 children will be diagnosed today?  It hit me hard when I learned that more children will be diagnosed with autism this year than with AIDS, diabetes, and cancer combined.  WOW!  ASD (short for Autism Spectrum Disorders) is equal across socioeconomic class, lifestyle, education, race, ethnicity – it is global!!!  It has been suggested that the care of my son will be about 3.5 million dollars throughout his lifetime.  Finally, did you know that there is NO, NONE, ZERO medical tests for ASD and there is no cure?  

So, How Did My Kid Get IT?

Who knows!  When I was pregnant I tested positive for the Cytomegalovirus – a common virus that once contracted most don’t even know they have it.  I never knew I was sick – but it was in my system and it can be lethal or devastating to a fetus.  My doctors watched over me and my gummy bear (yup, that is what I called him) and he grew normally – no worries.  The doctors also treated me for Gestational Diabetes (I know have type II thank you very much!!).  At 35 weeks my son started to stress.  The doctor suspected he had the cord wrapped around his neck and we opted for a Cesarean birth.  Good thing too, because as they pulled him out his blood oxygen level dropped to zero.  I really have a miracle child!!  

The Medical Research Council came out and said that there several factors that play a role in triggering the outcomes of ASD.  There are genetic and environmental factors – yet they are as of yet unknown.  Fact is there may not be a sole cause to why my child has ASD.  Not only are there genetic and environmental factors – but there are chromosomal abnormalities as well.  Insurance doesn’t like to test for these abnormalities just to see if these abnormalities exist – why test to see if you have funky chromosomes?  It isn’t like knowing that you have funky chromosomes will cure you or anything!!!!  (Their motto, not mine!!).  

I Didn’t Know He Had Autism!  Your Kid Looks Normal!

What does normal look like?  What does a child with autism look like?  Here is a picture for ya!!  Isn’t he absolutely perfect?  One of my favorite quotes from our training was “If you have met one person with autism, then you have met ONE person with autism!”  Autism is a spectrum disorder.  It is broad.  The severity of symptoms, the age they show signs of autism and whether they have other disorders varies from each person.  

In our training session there was a beautiful blond hair blue eyed boy with what I would term “classic autism.”  He was nonverbal, flapped his hands, rocked, etc.  Then there were the other two boys – both of which were high functioning.  My son has Pervasive Developmental Disorder – Not Otherwise Specified (I will go more into this later.)  In watching all three boys, and talking with their mothers it quickly became apparent that not only do characteristics of ASD vary from child to child – but within that child over time.   

There are times when it is OBVIOUS that our son has Autism, and other times when I wonder to myself – did we get him diagnosed wrong.  Granted five seconds later that thought vanishes as he sits on the floor and makes a line using all the CD’s he has found throughout the house.  It is important to remember that Autism is a SPECTRUM disorder and that every person with autism is going to exhibit the same behaviors.  My child has never flapped his hands.  I always know when he is overstimulated, because he wants to be a train and then his hands and arms become the wheels, but it is not “typical” behavior.  Does that mean he doesn’t have ASD?  Nope!

How Does Autism Affect Your Child?

Well, I’m still learning this part.  One of my favorite sites to visit is AutismSpeaks.  They succinctly stated that “Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. They include autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art.”  

That is my kid!  He struggles with social interaction.  He has both an expressive and receptive language disorder.  He exhibits repetitive and restrictive behaviors.  He is bright, but tested with a low “average” IQ (whatever this means – heck, I had an IQ of 40 at his age!).  He struggles with motor control and coordination – he hates the balance beam, but loves to do forward rolls.  He suffers from ADD (then again so do I, oh look at the pretty butterfly!  Did you say there were cinnamon rolls in the kitchen?  Where was I going?)  I don’t think he has slept through the night since birth, and often I find myself snuggling with him in the middle of the night.  

He is bright, and funny.  I walked through the school book fair last week and every adult stopped me to tell me how much they loved my son.  What a proud Momma!  He is so stinking cute that it is hard to stay mad at him.  He loves to write, trace, draw and spatial stuff he excels at.  So, how does autism affect my child?  Who knows?  It makes him who he is, and I can’t imagine him any other way.  I love his quirky behavior, although sometimes it exasperates me.  Then again, so does my three year old daughter, my sixty year old mother, my next door neighbor, and the lady in front of me at the check out line.  Hmmmm, maybe they all fall somewhere of the autism spectrum.  I know I do!

What's Next?

Evaluating Treatment
Positive Interactions
What is ABA?


  1. I was so happy to find your link on the No Ordinary Blog Hop! My son was almost two when he was diagnosed with PDD NOS. He is eleven now but much of your post sounded so familiar to me. We are so thankful for the way Sam is...his unique perspective has brought our family much joy! Please feel free to contact me if you'd like to chat about anything. I'll do my best to answer any questions and will share everything we've learned from our experience.

    1. Marty, thanks for posting. I will definitely chat with you as I begin this wonderful journey. I remember the devastation that I felt when he was first diagnosed, and now I feel hope and joy when I see my son. He really is special in all senses of the word!!!

  2. What a wonderfully thorough and honest look at autism. Thank you for sharing your story on NOBH.