Wednesday, February 1, 2012

A World of Difference

As I 've mentioned before, Little Guy's behavior has taken a downward turn the past 4-6 months.  Where we used to have meltdowns on a weekly basis, they now happen multiple times daily.  The intensity of the meltdowns has also increased, as has the length.  At certain times I can sense them coming; other times, they seem to crop out of nowhere.

As part of our desire to help Little Guy, we scheduled him to see a pediatric developmental specialist from Primary Children's Medical Center.  This doctor, along with other specialists from the Salt Lake area, comes to St. George every 2-3 months.  Last time Little Guy was evaluated by an autism "specialist" from our school district, it did not go well.  After two 30 minute evaluations (one at home, one at school), this individual informed me that Little Guy no longer had Asperger's Syndrome.

I was stunned; all of the studies I've read indicate that autism is something you never outgrow.

When I brought up the anxiety, inflexibility of schedule change, and sensory issues my son has, this person said, "Well, it sounds like he has anxiety, OCD, and a sensory processing disorder.  But, not autism."

Can an accurate evaluation really be given based on a mere hour of observation?  I left the session feeling angry, and more than just a little frustrated.

Needless to say, I came into yesterday's appointment ready to fight.

Amazingly, my list of convincing evidence was unnecessary.  After a quick introduction, the doctor was ready to listen to my concerns.  Little Guy was quietly coloring in the corner and not exhibiting "typical" autistic behavior at that moment, so I mentioned that he was was on his best behavior.  The specialist answered, "Well of course he is - I wouldn't expect him to act out right now because no demands or stressors are being placed on him." 

Wow - a doctor that really, truly understood my son's behavior.  I wondered what the difference was between him and our district "specialist" - besides the MD behind his name.

The difference, I discovered, was that he's the parent of a child on the autism spectrum.

And what a difference it made!  Here was a professional who not only has the textbook knowledge, he actually experiences on a daily basis what it's like to have an autistic child.  Instead of having a one-sided "lecture," we had an in-depth conversation about Little Guy's escalating behavior issues.  I learned that it's not uncommon for some kids to have a worsening of their autistic traits around this age, and that the meltdowns Little Guy is experiencing are a common behavior in kids with Asperger's (we never saw it in Big Guy).  It even has a name - the "rage cycle".  He referred a book to me called Asperger's Syndrome and Difficult Moments which analyzes this "cycle" and offers strategies about handling each stage of the meltdown.  I laughed when I read the title; it describes our life perfectly right now :)

We also discussed what we're already doing to help minimize these episodes, as well as our newly started therapy sessions.  The doctor seemed pleased with the idea of therapy and suggested we stick with it for an extended period of time as it often takes a while to see its full benefits.  I also asked for a referral for the PCMC child psychiatrist who initially gave Little Guy's diagnosis; unfortunately, there is quite a waiting list for her (4-6 months)  :(   However, I'm keeping my fingers crossed that we can get in to see her before Little Guy begins kindergarten at the end of the summer.  We also tossed around the idea of starting Little Guy on an anti-anxiety medication if the measures we're taking aren't enough to prepare him to enter school in the fall.  I realize that medication can sometimes bring its own problems, so any decision to begin one would be made after careful research and consideration. 

As I left the appointment, my heart felt much lighter.  Finally, I felt like I was not only heard - but understood.  This encounter gave me the hope that as we travel along the spectrum with our son, there will be others ready and willing to lend their support.  Others who have also walked the same path.

And that knowledge makes a world of difference :)

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