The Knitting Journeyman

Gathering Up One Thread At A Time As I Weave This Web Of Mine.....

Wednesday, March 31, 2010

April Is Autism Awareness Month

            You may not get a great deal of valid and scientific information from this post.  This is just me.  Talking about something very important to me.
            My beautiful perfect son has been diagnosed as high functioning autistic.  Not aspergers.  Not anything else.  What I am going to present to you is my own opinion.  And my own experience.
            My son has been diagnosed as ‘within the autistic spectrum’.  Do you know what that really means?  It really means that doctor’s don’t want to spend the time or expend the effort to learn what it might really be.  “Autistic Spectrum” is the new ADD/ADHD.  It means doctors can slap this label on someone and never have to do much more than that.
            My son.  The boy I have said for going on six years has a hearing disorder.  He’s not deaf, per se, but he has radically reduced hearing in at least one ear.  That I know due to all the experiments I put the poor kid through.  Nothing painful or hurtful.  Just your basic every day can you hear me now tests. 
            My son.  The boy who inherited MY ADHD, as I inherited it from my mother and her side of the family.  The ADHD angle has never been explored by anyone, but it is ever noticeable.  I tap.  Constantly.  When I was younger, the tapping got me beat, literally.  I learned to chew instead.  I have scars on the inside of both cheeks and on my lower lip, although there are faint lines on my upper lip as well.  If I cannot move outright, I learned, I would do something inconspicuous so there would be no beatings.  Time outs are horrors for N.  He cannot sit still.  Neither can his sister, who has been diagnosed as ‘normal’ all her life.
            My son.  The boy who loves to wrestle and usually every week-end he is with me, I get cracked in the head, by his head, by an elbow, a knee or something.  The last time N hit me really hard—I took a head butt to the mouth—I still have a bruise on my nose where he smacked my nose ring, a month later—he grabbed my face and peered into my eyes—‘Are you ok, Mama?’  He turned my face this way and that to check me out.  ‘I’m sorry I hurt you.  Are you ok?’  He also gave me kisses to make it all better. 
            My son.  He wakes up every morning and immediately goes to check on his big sister, who sleeps later than he does, if he lets her.  He gives her hugs and kisses to wake her up.  This child will go running out of nowhere, darn near tackle his sister, and give her hugs that lift her off the ground, because he loves her so much.
            My son.  He likes to bongo drum the heck out of the carpet.  That’s his ‘stim’.
            My son.  Who has trouble hearing, so he has trouble forming words at times.  He tries so very hard to make himself understood, but sometimes he gets frustrated and upset.  Me, when that happens, I roll my eyes, figuratively stomp my feet (usually figuratively) and I leave the room.  N gets upset.  He cries.  Or screams.  If we can get him to hear us over his own crying, and get him to realize we are there and listening, he stops and he does try to get us to understand what is going on with him.
            My son.  He does melt down.  Who doesn’t?  He does get over-excited in a crowded situation.  So do I. I tend to avoid crowds as much as possible anyway, because I hate all the errant energies running amok.  His sister melts down, a lot more often than N. 
            My son, who speaks, sings, laughs, giggles, parrots back all sorts of dialogue and overheard conversation (OMG—is that scary—the repeating back of conversations part). 
            My son, who loves to tickle and be tickled, who loves to wrestle and rough house, who loves to sit up against me and play with my hair for hours on end.  R will tease me all the time that my son is going to be a hair dresser one day.  The insinuation, of course, is the whole gay hair dresser aspect.  So what if he is?  Gay or a hair dresser?  So what?  He’s still my son.  I will not love him, could not love him, any less.  I can only love him more.
            My son who loves to run around naked, although we mandate a strict ‘keep your underwear on’ policy. 
            My son who loves to take things apart, play on the computer, dig in the dirt, water plants, fold clothes, play drums and guitar and whatever other instrument he can find.
            My son who loves dolls, pirates, nut crackers, and octopus.  The boy I knit the strangest things for and he always loves them.  My son with the soft gentle compassionate side.
            My son, who does not have an off button, who can and will push all your buttons until the button breaks and you want to break him.  The boy with the wild and obnoxious sense of humor, who thinks wiping snot on you is so hilarious he will keep doing it and keep doing it until you have no choice but to give him a time out…which is nearly as hard on you as it is on him.
            My son, who understands when you talk to him like a person.  My son, who doesn’t quite understand that everything in the world does not belong to him.  My son, who is so perfect and artistic and wonderful and loving and giving.
            My son, the stinky little creep who stole my heart the moment he was born.
            He’s just like anyone else, with his own idiosyncrasies and foibles and nuances and layers, like an ogre’s onion.  The deep silent flow of the river is my son.
            Am I saying he has been misdiagnosed?  Not really.  I am saying he has been UNDER diagnosed.  I am saying that there are so many levels of ‘autism’, but no one wants to distinguish why this child has an uneasy grasp of some social interactions while this child is locked away inside himself unable to speak or move on his own.  How can those two people have the same disease?  They do NOT have the same disease.
            A “spectrum” is insufficient.  Low functioning or high functioning…no one cares once they hear the word “autistic”.  All anyone ‘hears’ once the word ‘autistic’ is uttered is there is no hope for this kid and trying to interact with him or understand him is a lost cause. 
            I don’t tell people, yes, my son is autistic.  I would prefer, for my son’s own personal sense of well-being and self-esteem, that people think I am a horrible mother when my son goes tearing off down the aisle in the mall, giggling like the Mad Hatter himself, refusing to listen to a word I say, because to him this is all a fun game of chase.  I would rather people look at me with disdain, rather than look at him with disdain and with pity, as if autism is somehow contagious, and he were some lost cause to be shut away in a nursing facility his entire life.
            I have read so many articles about the proposed dismissal of the term ‘Asperger’s disease’Asperger’s is a form of high functioning autism.  The term ‘high functioning’ alone gives many of these kids hope that they can find a way ‘out’, that people will stop looking down on them.  It gives them confidence to be real people, not some ‘thing’ with a disease that no one wants to understand, a disease that makes most people go out of their way to avoid interacting with that kid.  Let us take all that hope away, all that self-esteem and self-confidence, simply because it is so much easier for doctor’s to diagnose ‘autistic spectrum’ rather than Asperger’s. 
            Does anyone else remember the statistics, since Autism has taken over the public mind, where 80-95% of all children diagnosed with ADD/ADHD were misdiagnosed…but it was so much easier to put kids on drugs to make them behave a certain way, rather than trying to find out what might actually be wrong with them?  This is the autistic revolution.  Let’s slap any sort of label on a kid that makes our job that much easier and call it a day.  Who cares if they are high functioning or low functioning or even functioning at all?  Who cares if there might be 100 or more diseases currently labeled as ‘within the autistic spectrum’ that may be treated differently than the way ‘most’ autistic kids are treated.
            My son has a sensitive stomach.  He was born sensitive to chemicals and additives in foods.  That doesn’t mean that if prepared the right way the kid wouldn’t eat a whole barnyard full of animals and vegetables.  It means that processed foods and he do not get along.  Overall, his system has had to learn to adapt, although he still prefers natural and unprocessed foods over pre-packaged anything.  Cantaloupe and watermelon are his favorite things.  Not that cheesy poofs don’t play a mean second there.
            He also has my sensitivity to blood sugar issues.  Which means, when he doesn’t get enough food into his system, his blood sugar drops, and he gets cranky and whiny.  When his blood sugar is low, his ability to deal with other people drops.  Most of the problems we were having, with both E and with N, were solved once we see the kids getting tired and droopy and we feed them.  That fixes more than 75-85% of all the issues we have, right there.  The other bit is more trying to find something they will actually eat, sometimes.
            I am not asking for doctors to do anything more than their jobs.  Parents should not have to be forced to fight every single step of the way, simply to find the help they need for their children.  Doctors should not be able to take away things, like Asperger’s, when it means so much to the children’s self-esteem, just because it makes things easier on the doctor.  A doctor is supposed to serve his patient’s best interests, not his own.  Especially when that patient is a child.
            That’s it.  Really.  That’s all I have to say.

Here are some resources for you to learn more about people who are autistic in one way or another.
            Temple Grandin
            Daniel Tammet
            John Elder Robison
            Kim Peek
Just to name a few.
            Google ‘Autism’ or ‘Autism Awareness’, anything in that range, and you will come up with so many choices, so many sites.  There is a great deal of information out there.  Do your research.  Make up your own mind.
            I will probably post more throughout the month of April about autism, and about my son and our journey through and with autism.  Please stay tuned.