Tuesday, May 31, 2011

AoA: Coming Out

It's just best to do these things simply and quickly:  I have Asperger's syndrome.  If you see a post with the header AoA, that stands for Anecdotes of Asperger's.

My daughter has been having trouble in school.  Scholastically she's doing excellent work, with As and Bs the normal grade on every subject... when she remembers deadlines.  I read a blog by another knitter who has Asperger's, and I recognized some things in my daughter, so I brought it up when we were in a consultation with the school councilor and the vice-principal of the school.  The district psychological councilor was brought into the discussion, and CC had a full-day testing of IQ and emotional development.  The end report?  She's borderline Asperger's with alexithymia... a difficulty in identifying and expressing one's own emotions.

While waiting for the tests to come back, I had started reading.  I began with "Pretending to be Normal", Liane Willey's firsthand account of living her life with Asperger's.  In it she details how she frequently has trouble with walking and driving directions, getting lost often.  I have at least six or seven hair-raising accounts of my dangerous adventures in getting lost while driving or walking.  I started wondering.

I had devoured the first book in about 4 hours, so I moved on to the next book, "Eating An Artichoke"
a mother's account of the diagnostic and coping process with her Asperger's son.  A few bells started to go off.  Asperger's is genetically passed down.  Typically at least one parent has Asperger's traits.  Asperger's children often have writing difficulties, though their reading is excellent, and I remembered that in fourth grade, my grandmother was asked to have me start typing my homework, because my handwriting was so poor. 

I had to wait to make the purchase, but I moved on to Temple Grandin's "Thinking in Pictures".  She describes her method of working, building livestock handling facilities, as a process of seeing the parts of the construction in her mind, being able to swap out parts as needed, and seeing the whole thing work.  I once spent an entire afternoon, staring out the window, building a modified weaving loom in my head.  I was frustrated with traditional looms, and I wanted to improve upon them.  Only my fear and lack of knowledge in using power tools safely held me back from making a prototype.  But the entire plan is still in my head, in fact I'm picturing the heddles and harnesses in my head right now, trying different materials and wondering if I should attempt a computer interface device to raise and lower the harnesses.  Ah, multi-tasking.

When discussing Asperger's with friends and family, the first question usually was "What makes you think you have it?" and while I'm not terribly articulate when speaking on the phone or in person, I believe I can wrestle with it here, in a written format.  My primary clue?  The enormous sense of relief that I *finally* have an answer to all the questions that have been bugging me my entire life.  The descriptions click;  it just makes sense.  I have 10,000 anecdotes in my head, and I will never have time to share them all with you, but I know them and remember them, and they've plagued me my entire existence.

The most recent one was just last week.  Aspies often have extreme sensitivity to sound or smells, and are also easily distracted.  They also can have some difficulty with very high-register or low-register sounds. 

My daughter had a band concert, the final one of the season, so there we were in attendance.  There was a child maybe a little younger than Caitlin sitting in front of me, and he was very distracting... he kept fidgeting, scratching himself all over under his shirt, front and back.  I was tempted to tap his mother on the shoulder and say something, it bothered me so, but if she wasn't distracted by it, I wasn't going to say anything.  When the band started, I was fine... it was a single grade's worth of students playing in a gymnasium.  But when all three bands... honor, 7th, and 8th grade bands combined for one final number, I just couldn't deal with it anymore.  It was far too loud.  I pretended to lean forward with my elbows on my knees, holding my chin in my hands, but what I was really doing was covering my ears.  And this was not the first time in my life I had done this in an auditorium or gymnasium. 

Also, when the teachers came up to the microphone to speak, I could only understand one word in five, though clearly everyone else could understand them, because they laughed at jokes... even the three old ladies sitting two rows of bleachers in front of me.  To me, they sounded like the quintessential Charlie Brown teacher's voice... mwah mwah, mwah mwah mwah mwah.  I could hear the inflections, but not the words.

There have been other times, when Caitlin and I are together, where we have covered our ears and looked around, wondering why nobody else was bothered by the noise... the sheer painful assault of it!  I'd dismissed it as maybe we were directly under a speaker, or in the acoustic "sweet spot", but now I know... we're just wired different.

There will be more anecdotes to come.  I am going to try to make this a regular thing, as I feel an obligation to all the other undiagnosed AS people out there to raise awareness.  The character of Sheldon Cooper on "Big Bang Theory" is not enough... especially since it seems the character is undiagnosed as well.  I spent 43 years wondering what the hell was up with me... now I know.  And knowing has actually made me happy.

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