Saturday, October 13, 2007

• Is Autism on the Rise?

  My oldest son, Aaron, and I had lunch last Wednesday...hoping it's going to be a regular event, since that is the only day he doesn't go to school or work.  He was in a surprisingly upbeat mood.  The last time we had lunch together, he was lamenting the lack of a social life - lack of friends at all, actually.  He wondered how he could be surrounded by people every day at school, the local community college, yet feel so lonely.  It's like watching people through a thick glass window.   They are laughing and talking in little groups; he wants with all his being to talk to someone--just one other person--but he doesn't know how to break that glass barrier.  It breaks my heart to know how lonely he is.  Being autistic makes it so much harder for him to fit in. 
  
  We moved to Sacramento for his 6th grade year.  I remembered going to observe him at school, several weeks after the move from Santa Barbara.  I arrived at recess.  He was alone, leaning against the flagpole, watching the kids.  His stone face hid too well what I later found to be near suicidal thoughts.  As if the aching loneliness wasn't terrible enough; a group of kids decided he should be tortured for his differences as well.  Daily he was subjected to teasing, belittling, prodding, taking his things and being the butt of jokes that would make the entire class-even the teacher--laugh.  One time the leader of the group succeeded in knocking Aaron over, with his desk, which was met with an uproar of laughter.  The girl was not reprimanded, only told to return to her seat.  She even took his own six grade class photograph and defaced Aaron's picture.  I found it when I went to clean out his desk after finally succeeding in getting him moved to another class 3/4ths of the way through the school year. 
  
  I'd met with the principal a month before school started, and explained Aaron's "special needs."  At that time, 1990, we didn't have a diagnosis.  Despite almost a half dozen tests and baffled teachers and specialists year after year, he was an enigma.  "It's almost like he's autistic," on specialist commented around first grade.  At the time, they knew of low-functioning autism, not Asperger's or high-functioning autism (HFA).  (The significant difference between Asperger's and HFA, btw, is that early language and cognitive skills are not delayed significantly in children with Asperger's.) The principal thought she had just the teacher:  Mr. Magdaleno.  What a HUGE mistake.  Mr. Magdaleno got all the troubled -- aka behavior problems.  Apparently the principal thought what Aaron needed was discipline.  Mr. Magdaleno called me two weeks after school started.  I held my breath, expecting the usual when teachers called me about this point, but he surprised me.  "Aaron's doing great!" he said.  "Really?" I was stunned.  It was the first time he started a new year that I didn't get "the call" to come in and help the teacher figure out what was going wrong.  "Absolutely!" he assured me.  I was elated!  This move was going way better than I could have hoped. Then I got his progress report in the mail two weeks later:  straight F's.  I set up a meeting with Mr. Magdaleno.  I found out that in fact Aaron had been doing poorly since the beginning of school. 
  
  "You told me everything was fine!" I protested.  "Why didn't you tell me what was going on?" 
  
  "I like my first call to be on a positive note." 
  
  Alarm bells went off in my head.  I talked to the principal about moving Aaron from that class, but was rejected before she even heard me out.  She gave me her stock speil, about how disruptive it would be if they moved teachers every time parents and/or pupils had a personality clash with the teachers.  blah blah blah.  And it had already been my experience, year to year, that the teachers and I were winging it.  For months, I tried working with this teacher.  I had Todd go with me, because it became obvious that whenever we met, we were having two one-way conversations.  I don't know if the man ever heard a word I said.  Todd had no better luck than I did getting through to the man. 
  
  Aaron's progress deteriorated to the point where we all wondered if he would graduate from 6th grade.  I made my monthly trek to school, and was fighting tears of frustration with the teacher when I left.  Walking past a darkened, empty classroom, I was startled when the door opened, and Aaron's reading specialist motioned me inside.  She said she'd seen me go in and was waiting for me to see how it went.  I started crying.  She confided that she had been wanting to talk to me, and when she saw me that day, knew she had to make her move.  She told me in no uncertain terms Aaron needed to be moved out of that classroom. 
  
  "But I tried to change his classroom!"  I protested. 
  
  "I'm going to tell you what to say," she confided in me, confirming my suspicion that our meeting was somewhat clandestine.  She gave me key words to say, and got me riled up again so I could go storming in the principal's office and refuse to leave until he was moved.  I did, and I was surprised that the principal didn't even argue with me. 
  
  The rest of the year was wonderful.  Aaron thrived under the new teacher.  But for some reason, he agonized over Mr. Magdaleno's cold treatment of him once he left the classroom.  At best, Mr. Magdaleno had been indifferent before, but the coldness was more than my little boy could bear.  The new teacher fretted over Aaron's obsession in getting Mr. Magdaleno's approval, and enlisted my help.  Finally, as part of a writing assignment, Aaron got it all out on paper.  He wrote a letter to Mr. Magdaleno, apologized for being a poor student, and told Mr. Magdaleno how he realized he brought some of the misery on himself, by not doing all the work.  Aaron wanted to give him the letter.  The new teacher and I tried to talk Aaron out of it, explaining sometimes it's good enough to just get it off our chest by writing, but Aaron was insistant on delivering it.  Finally, Aaron made his move on the afternoon Mr. Magdaleno had recess duty.  His new teacher was watching from afar.  Aaron said his name several times.  The third time, Mr. Magdaleno finally acknowledged his presence.  Aaron held out his carefully folded paper, explaining he'd written a letter.  At first, it looked like the teacher wasn't going to take Aaron's letter, but finally, he did, and walked straight over to the trash can and threw it in, unopened. His new teacher was aghast, and rushed to comfort Aaron.  She called me that night to let me know what happened.  It took years for Aaron to get over it, to let go.  Even though Aaron's previous teachers did not know how to help him, they rose up to the challenge, wanting to help him succeed.  I cannot say the same for Mr. Magdeleno.  Life for Aaron became of succession of rejection. 
  
  It was refreshing to see Aaron so upbeat last Wednesday, but I soon learned why:  He received his birthday gift from his dad--a new car stereo, and was going to install it when he got home.  But, after we talked awhile, I soon learned that was not the only reason.  A guy at work has become friendly with Aaron, and was going to visit that afternoon.  This guy is also a student, works part-time at the same place, lives with his girlfriend about a mile or so from us.  Aaron had mentioned his name before, telling me that Dwight's girlfriend got her car stolen last week.  Aaron was pretty worried.  The thought of having his car stolen had him worried. 
  
  "Should I get a club?" He talked about it for days.  Having a friend is huge, but here's the bonus:  Dwight said he was 'envious' of Aaron.  Aaron beamed.  "No one has ever been envious of ME before!"  He marveled at it, repeating it a few times.  When he didn't offer it, I finally asked why he was envious.  "Is it how lucky you are to live in such a nice place?  To have your own room and bathroom?" I guessed somewhat facetiously. 
  
  "No, he wanted to know how I could have such a nice car on a minimum wage job!"  Aaron is proud of his "new" car, and now he's got it just the way he wants it.  I got his windows tinted for his birthday, and his dad got him the stereo.  He's buffed out the paint and cleans it at least once a week - the car sparkles. I asked Aaron if Dwight knows he's autistic.  Aaron couldn't remember, but thinks he probably did.  He tells anyone he encounters more than briefly.  Then he asked me, "Mom, do you think autism is on the rise, or do you think they just have a name for it now?"  It's a good question,  I told him.  After spending ten days with my dad, I saw a LOT of autistic traits in him.  I'd read that autistic children who are never moved are much more successful socially than those who are moved as children.  Kids who grow up together seem to accept each other's quirks and therefore autistic kids aren't socially isolated.  Aaron confirmed this based on his life prior to moving.  He had lots of friends in 5th grade.  He was in Scouts, and almost every weekend, spent the night with friends.  "In fact, they were more than just friends, they helped me!"  He told me about a time when he had to give a speech.  He didn't think he could do it, but the teacher, Mrs. MacEachen, and the class, were supportive.  They all told him he could do it and prodded him to go in front of the class.  When he stumbled on a word, someone would help.  When he was done, the class erupted into applause, and gave high fives and patted him on the back.  (yes, I'm crying and did when he told me this story) 
  
  It reminded me of another conversation I had recently with someone about homeless people.  "In the old western days, they were the trappers, the loners, who lived on horseback, fishing and hunting for their meals. " They had a place to go, to be.  Now, there's no where for that personality type.  I don't think autism is necessarily on the rise, either, as much as we've become intolerant of those with "differences."  At least now Aaron know why he's different, and doesn't spend his days thinking he is a freak of nature.  If you didn't read back on my history of Aaron, you might not know that we were advised early on not to tell him he was different.  We didn't have a label for it; they were just starting to become aware of HFA and Asperger's was not well known.  Without considering that Aaron himself would know he's different, and without an explanation he'd be left to his own childish devices to "fill in the blanks," we didn't know what harm we were doing.  Or by moving him.  Still, I feel like I should be doing more to open these mysterious doors for him.  Or am I trying to do too much? 
  
  Aaron's class reunion is next week.  He is very excited to go, hoping it will bring some connections that frankly didn't much exist when he was in high school.  But he's anxious to go--never misses an opportunity to be social--kind of odd for an HFA but not when you consider it's one of his obsessions.  He can't wait to tell people there's he's autistic.  Chances are they will have heard of it, but I thought I better put together a little explanation for him.  He choose these photo when they requested them for the program:
  
  
  Left taken in spring (experimenting with longer hair); right more recently.  I love it when he smiles.  He choose the one on the left to show off his 'guns' and the one on the right because it shows his car. 
  
  I hope he has a good time.  He will know a few people and so he should be able to socialize. 
  
  I know Aaron's life could be so much more...I just don't know how to get from here to there.  Some days I'm tired of winging it. For crying out loud, why can't I simply teach him how to speak to the other kids on campus?  I wasn't all that good at it myself until fairly recently.  Who can teach him?  I am happy that parents of autistic children today have so much more knowledge and resources available to their children and them.  But why does this void of services or help continue to follow Aaron's age group?  Even neurotypical children have their share of challenges, as I know all too well right now as my attention shifts onto Zane and his teen antics. 
  
  Stay tuned.  I hope to download my camera tomorrow and show you what a very special treat we had last night....(tease, tease!)
  
  

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