Monday, June 13, 2011

Deciphering the Mystery

I was recently told in casual conversation that "Autism is a real mystery" and when I asked this individual to elaborate, his answer was simple, "it's what I've heard".  I was surprised by the cavalier response and I gave him my blog address.  But I couldn't get his comment out of my head.  Was he right? Is this disorder a "real mystery" today?  Is it impossible to decipher (make sense of)?

Two years after my son was admitted to his first group home, his medication intake was as follows: 2 pills in the morning, 1 pill at noon, 2 pills at 3pm and 1 pill at bedtime. My son was drugged and lethargic 24/7.  I became angry every time I attended his IEP meetings (individual evaluation plan) because his doctor, with pen poised in midair, would say "there isn't enough information to determine what will work, so, I'm prescribing..."

WHAT?! If you don't have a good assessment why are you medicating?  I realized I needed to educate myself in order to fight against this medical treatment.  I was angry that his caretakers wouldn't listen to my logic and research until my fears came true.  Joel became immune to the meds, his behavior worsen and he was admitted to Morton Plant Hospital detox unit.  And Yes, I was ready to burn down the group home with every staff member in it (except the kids, of course).

The good news is I won the war, Joel was moved from this particular group home to a behavioral focus group home and within 18 months he was completely clean.  To this day, Joel's caretakers focus on his behavior, diet and communication skills without the use of medication.

Now I ask, does it stand true that autism is a real mystery? In Joel's case the answer is NO, his previous caretakers were just idiots.  I want to believe that the gentleman meant to say that despite proven statistics and all of the medical information available, global understanding is the real mystery because awareness of this disorder does not capture enough attention.  Autism is in fact known as the most common ASD today and it affects 1 in 58 boys in the United States. 

According to The International Autism Research and Education Center ( there are several main components of autism that can help people understand ASDs.

The components (as specified on the are:
1) Autism is a complex developmental disorder
2) Autism is likely caused by neurological problems early in a child’s life
3) Autism mainly affects developmental, social and communication skills
4) Autism is just one of several Pervasive Developmental Disorders (PDDs) including: Asperger’s Syndrome, Rett Syndrome, Childhood Disintegrative Disorder, and Pervasive Development Disorder Not Otherwise Specified (PDD-NOS).

The Common Signs of Autism & other Spectrum Disorders are:
  1. Difficulty with social interaction
  2. Problems with verbal and nonverbal communication
  3. Repetitive behaviors or narrow, obsessive interests
Please visit for more info

Finally, I will admit that I do get it...individuals unaffected by autism have a difficult time grasping what it is like to live with this disorder.  But I am an optimist and I have to believe awareness will go global and we'll find a cure.

No comments:

Post a Comment