April is Autism Awareness Month

I found out a little late in the game that April is Autism Awareness Month.  I am not sure how official it is…it may be a bunch of bloggers just got together and said, “HEY! Let’s proclaim Autism Awareness Month!” but that’s still good enough for me.  I do know April 2 was World Autism Awareness Day.  Missed that too.  But I DID buy a Autism Awareness sticker at Toys R Us for $1!  Anyway, I will be blogging as much as I can this month about my search for answers and our Early Intervention journey.  Please click on the widget on the right to find some wonderful blogs by others whose lives have been affected by Autism Spectrum Disorders.

I have a child who appears to be on the Autism Spectrum and is receiving therapy through Early Intervention (more on that another time).  What are Autism Spectrum Disorders or Pervasive Developmental Disorders?  They are a cluster of neurological disorders that cause developmental delays in varying levels of severity.   They range from Autistic Disorder, Pervasive Developmental Disorder Not Otherwise Specified, Asperger Syndrome, and Rett Syndrome. 

The rate of Autism cases in children is growing at a frightening rate and yet science has still not been able to pin down a specific cause.   The Autism Society of America states on its website, “Though there is no single known cause or cure, autism is treatable. Children do not “outgrow” autism, but studies show that early diagnosis and intervention can lead to significantly improved outcomes. With the right services and supports, people with autism can live full, healthy and meaningful lives. ”   Autism Society of America http://www.autism-society.org/site/PageServer

They also include this listing of some of the signs of Autism.  I have placed a star next ot the characteristics that my son Percy exhibits and the italics are my comments.     (source)

Persons with autism may also exhibit some of the following traits:

• Insistence on sameness; resistance to change  * (he has problems with transitions)
• Difficulty in expressing needs, using gestures or pointing instead of words  *
• Repeating words or phrases in place of normal, responsive language  ( ?- my son just doesn’t speak!)
• Laughing (and/or crying) for no apparent reason showing distress for reasons not apparent to others *
• Preference to being alone; aloof manner * (sometimes…he is inconsistent)
• Tantrums  * (that is an understatement)
• Difficulty in mixing with others * (he can be too rough, or may prefer to be alone)
• Not wanting to cuddle or be cuddled * (often, and in the beginning, but lately he is growing more affectionate! yaay!)
• Little or no eye contact * (depends on his activity)
• Unresponsive to normal teaching methods  (?–too soon to tell, but often it seems like he is not processing what we try and teach him)
• Sustained odd play * (he plays by mouthing objects excessively and eating things that aren’t food)
• Spinning objects
• Obsessive attachment to objects
• Apparent over-sensitivity or under-sensitivity to pain * (very under-sensitive)
• No real fears of danger *
• Noticeable physical over-activity or extreme under-activity * (OVER actvity)
• Uneven gross/fine motor skills
• Non responsive to verbal cues; acts as if deaf, although hearing tests in normal range. *

Some of these fall into the “too soon to tell” category for us.  Percy also has some “stims” (self-stimulating behavior) like stomping and spinning and sometimes flapping his hands.   Unfortunately has also has the “aggressive and/or self-injurious behavior”.  He hurts himself and others when he loses his temper.  He has been known to bang his head on the floor until he bleeds.  He has also bitten a child he didn’t know because that child happened to walk by while my son was angry and lashed out and bit the nearest object.  Usually it is his poor older brother who bears the full force of his fury.  He is also almost 2 and barely speaks.  He only has 2 words I understand. 

Percy does not have all the characteristics of Autism.  He does have emotional interaction with us and has a huge, brilliant smile when he is happy.  Official diagnosis is not usually made until around 3, but I would have to say that right now he seems to display signs of what they call PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified).  Wikipedia says “PDD-NOS is a diagnosis for people who are well-described by the ”PDD” label, but can’t be categorized by any other disorder.  It is usually milder than autism and has similar symptoms to autism, with some symptoms present, and others absent.”    

Here’s a twist.  The ASA states, “The term “PDD” is widely used by professionals to refer to children with autism and related disorders; however, there is a great deal of disagreement and confusion among professionals concerning the PDD label.“  One of those disagreements is whether or not Sensory Integration Dysfunction is a neurologial disorder on the Autism Spectrum.   Both of my children suffer from severe sensory integration issues, but again I will have to save that for another post.  In the meantime you can read what good ole’ Wikipedia has to say  http://en.wikipedia.org/wiki/Sensory_Integration_Dysfunction 

There is so much information that I am leaving out.  I wish that I could provide a more complete picture but it is simply too broad a subject.   I want to stress again the importance of the ASA’s statement “early diagnosis and intervention can lead to significantly improved outcomes”.  During the first few years of life, especially to age 3,  the brains of young children grow at a phenomenal rate.  Early Intervention can help tap into that growth period and promote improved development.   I can already see positive changes in my son and it has been less than a month!   However, even children who are diagnosed later will still benefit from treatment. 

A word to any parents who are considering seeking help for their children–I knew for a long time that something was unusual about my child before I sought help.  Now I am so glad I did.  But it was hard.  Some people said I was overreacting.  My child’s former pediatrician did not validate my concerns and was even dismissive of me.  He said we should wait until he was 3 or so and see what happens.  I think he was wrong and have a new doctor now.  If I had waited then I would have missed out on the chance to immediately start enhancing my son’s development and my family’s quality of life.   You are your child’s best advocate.  You know them better than anyone.  If you have a concern then I encourage you to get then evaluated.  It is free through your local government and is your right as a tax-paying citizen.   I will provide more information later on the services provided by Early Intervention, though the process varies from state to state.  In the meantime if you have any questions you can email me at life.as.a.platypus@gmail.com .    You are not alone.