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(warning-it's a long one!)

Over Spring Break I attended a lecture on Autism at the Sacramento, CA Sutter Hospital lead by Dr. Michael Chez. I had already been reading a wonderful book about college and students with Autism and Aspergers Syndrome and was eager to hear what the medical community had to say about the advances in Autism Research.

When my son was around 5years old we had been told that he was on the “Autism Spectrum.” That he had either PDD-NOS or Aspergers Syndrome. Both the school district, Occupational Therapists, Speech Therapists and the Pediatric Neurologist (who spent 10minutes with us) agreed on this. Since then any Psychological evaluations done for the benefit of getting my son services were conducted through the school. We only went “outside the system” for speech, sensory and occupational therapy. We trusted the school to know what was best academically. After hearing Dr. Chez speak and reading my book on college planning, I decided it was time to have my son re-assessed to better gather a clear plan for his future.

Our request to take him to Dr. Chez and his team at Sutter was denied, but our insurance did cover another wonderful specialist who was also a pediatric neurologist. I gathered my paperwork, typed up a diagnostic summary of my son’s 10years in the system and crossed our fingers. She was wonderful and really took her time with us. She spoke both to my son and to myself for quite a while.

About halfway in the appointment she turns to me and says “I have no doubt that your son is Autistic. Not Aspergers, not PDD-NOS, but Autistic.” I was pretty shocked. “Why is that?” I ask. “He has too many areas affected to have Aspergers Syndrome and his use of language is affected. His symptoms are too severe for PDD-NOS to be considered. That is only a diagnosis if the child doesn’t fit the Autism criteria, and your son fits it. There is no doubt in my mind that he’s High Functioning Autistic.” Both my son and I were floored.

The Dr. left the room to make some copies and I turn to my “man-cub.” “This doesn’t change anything” I tell him, “You are still the same person! It’s just a word.” “I know!” (with a teenage eye roll that tells me he isn’t phased in the slightest.) A rose by any other name still smells as sweet. This is true. Later that night I tell him (as he adores Lord of the Rings and I know this will sink in), “Was Aragorn still Aragorn when he was called Strider?” “YES!” said my son. “Was he still Aragorn when he was the King of Gondor?” “YES!” said my son. “Did those names change him or who he was in any way?” “NO!” (he’s got the picture.) “The same goes for you” I explain. "This is just a word to help your teachers know what you’re good at and what you need help with. It will help you with college and in your future. You don’t have to tell anyone you don’t want to and it doesn’t change who you are.” (I think he got the point.)

Was I saying all of this to make him feel better? Or myself? Even though I don’t like to admit it, I was surprised. Of course it doesn’t change one thing about him, but is that really how others see him? Do I just know him so well and love him so much that I don’t see him the way other people do? Here was a woman, a trained professional highly regarded in her field. She’s seen countless children all across the Autism Spectrum (from non-verbal full Autistic to “eccentric” Aspergers) and she could tell so fast that he was Autistic. Is that what other people see too?

Our next step is a 4hour long appointment with a Pediatric Developmental Psychologist (say that 10x fast) for a full cognitive assessment. This will give us very specific areas of strengths and weaknesses to include in his school accommodations, and just to know for all our benefit. He also has a lot of sleeping issues that we’re trying to address (in an all-natural way.) If he doesn't respond to the natural treatments, he’ll have to go in for a EEG (sleepover study.)

I hope all of this information is more of a tool than a weight on his back. I hope he can learn to self advocate better and educate others. He’s not a label, he’s my unique, wonderful, strong, amazing kid. He’s not Autism, or Aspergers, those are just names for things he has a hard time with. He’s a unique wonder and I’m so happy he’s my son.

April is Autism Awareness month. If I haven’t bored you by now and you’re interested, here are some latest facts, statistics and information on Autism. (And for the record, I hate the stupid rainbow puzzle ribbon. UGH! My kid is not a puzzle to be put back into place. Can't they just pick a color like every other group?)

Autism is a Neurodevelopmental Disability / Neurobiological Disorder: There are variations in the way the brain develops. Nuro=brain/nervous system. Biological=affecting the organism.

-1:100 boys will be diagnosed with a form of Autism

-1:142 children will be diagnosed

-The ratio for Autism is 81.83% Male and 18.17% Female.

-22 genes are affected by autism and it may be hereditary.

-50% of children with Autism have some form of epilepsy

  (mostly at night).

-There is a lag between hearing/seeing and responding

  (so give them extra time to process if you’re talking to someone on the spectrum!)

-They often have Autoimmune Inflammation

  (food allergies, low immune system, etc…)

The shocking increase in Autism started in the early 80’s. From 1987-1998 Autism Diagnosis rose 273%. Other disabilities only saw a 35%-49% rise. Double checking the diagnosis through auditing and a lack of decrease in other disabilities discounts the “over-diagnosing” theory.

From 1987-2002 there was a 32% increase in “home living” situations for Autistic individuals and a 22% decrease in community care facilities. (YAY!)

Asian and Hispanic groups have had the highest increase of Autism over the last 15years (relative to the population.)  

Impaired areas are: verbal and non-verbal communication (including, odd or peculiar language or very advanced language for their age), social interaction difficulties (appropriate conversation, conversation initiation, understanding social rules), abnormal patterns of behavior (intense interests and hobbies, compulsive physical releases like rocking, finger flicking (aka: stimming).

Parts of the brain affected: Hippocampus & Amygdala (emotional regulation) Cerebellum (motor coordination) Brain Stem (brain/body communication) Neocortex – Frontal Lobe (executive function) Temporal Lobe (auditory processing.) Mirror Neurons (learning to do by watching) system dysfunction.

Social Cognitive Differences: Perspective taking skills (what others might know, or not know), Differences in Social Motivations (brain regions respond the same to both people and objects. The “pleasurable” properties are not the same when socializing.)

Lack of “Central Coherence” (The inability to draw together diverse information to come to a conclusion.)

*Sources – M.I.N.D Institute & S.T.A.N.D clinic. Both Sacramento, CA

2003-2009