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.

A New Vista On My Journey

            I started to read Temple Grandin’s book, “Thinking In Pictures, My Life with Autism” this week-end.  I can only read it in small portions, because I am processing so much of it.

            T actually recommended this woman to me.  He wanted me to see the HBO movie about Temple, because she is autistic--apparently he and I both do a great deal of research on things on our own.  This surprises me because I have asked him so many times for reading recommendations, websites, whatever he has to offer, so I have more resources to study.  We both agree N is not autistic, but we also both agree that he is different.

            I still hold to the fact that there is also something wrong/up w my son’s hearing and once we get that documented, diagnosed and dealt w, his verbal skills will progress in terrific manner.  The boy is whip smart, but he has trouble repeating things back, unless I say them a couple times. Couple that w the fact he has to watch me say things sometimes before he gets them…and I think hearing is an issue.   If he were not so empathically gifted, I think he would miss more than he does.  I am not so close as Jenny McCarthy is to her son (see her book, “Louder Than Words”, which still makes me cry), where she would pass out when he son had one of his fits, but N and I do have something unique.  This difference w N is he has to let me in…when he thinks he is protecting me from things, there’s no way I can get to him.  He’s very interesting in his protectiveness of me.  Scary things on tv and I cannot watch.  We went to cabela’s the other day and they had stuffed lions attacking stuffed gnus—and he wrapped his arm around mine and pulled me gently and w no fanfare in another direction so I wouldn’t see them. 

            Back to Temple Grandin’s book.  It’s killing me to read this, in a good way.  For some reason, I am connecting with/to her, to her experiences, far more than I have connected w other books I have read on similar subject matter.  She and I share that connection w animals, I will give it that, but she is far superior to me in so many ways.  I read fast—everyone who knows me knows I read very fast, unless something is boring the snot out of me—which is when I will struggle and meander through things.  I am on page 20 of “Thinking In Pictures” after two days—not because it is boring me—but because I am having to re-organize things in my own brain—I am gaining new insight unto myself here.

            Friday, when T dropped off N, he and I had a nice little chat.  Both of us together, not one nor the other of us, are responsible for N being the way he is, genetically.  Don’t say, yah, duh, we know that.  T and I both have those near borderline autistic-like behaviors.  He hates crowds—I hate crowds.  If there is an outskirts to anything, he or I will be there.  He and I are similar in many ways—if we hadn’t dated, we might have been decent friends.  There is simply no communication between us.  A grunt from him is an entire conversation.  One which tells me nothing.  There are too many assumptions about things on his part that will never be copacetic w me.  We have different learning disabilities—he is so freakin’ slow.  I am overly fast.  Pretty much sums us both up.  He’s too darned slow for me—and I am too darned fast—for much of anyone usually.  And I do not tolerate slow people that well…especially if I find them beneath me, or ignorant, or not worth my time, or any variations thereof…I do not like to make the time to drag people up to see what I see the way I see it, unless they are really special to me. 

            Temple … acquires?  Accesses?  Mental input as pictures.  Vivid pictures.  She gives a far better description than I ever could.  She does not think in words, does not think verbally.  N does not think in pictures, per se.  He has a vivid imagination.  He can see things very clearly.  But his mode of cerebral input is not all pictures.  I cannot tell you 100% what his style is.  But I can tell you mine.  I am not 100% visual.  I do not think in English, for one thing.  Most of the words, the verbiage in my head is me writing things…the eternal writer who may actually get things on a page at some point.  Otherwise, I think in colors, emotional, and scents. 

            Scent is always a strange one for me, as I spend so much time w allergies and sinus colds and whatnot, which means I cannot smell even if I wanted to smell anything.  Plus, even if my sinuses are clear, and there is not an allergen in sight, I do not always smell things.  The way I smell is also different.  I have to open my mouth most of the time, to taste the way things smell, before I can figure out what they smell like.  It’s the reptilian hindbrain of humanity coming out in me, apparently.

            One thing that keeps ringing true w me is the whole studying human behavior as if she were an anthropologist from Mars.  What exactly do you think I have done my whole life?  Did I do it to understand people, to be able to fit in to society better, to learn my own place more?  I don’t think so.  I spend more time proving I am who I am and if you don’t like it bite me than anything else.  I have a fascination w the abnormal psych subjects…how they thrive outside the norm while pretending to be normal…serial killers, mass murderers, you name it.   How they adjust their reality to the supposed reality of everyone else around them.   Have you seen the movie “Bug” w Ashley Judd?  It’s all about the way the mind operates…and how what is real for one person is not real for another.  How exactly can that be?  That’s what I want to know…what is real…and why…

            My favorite thing about animals is that they are who and what they are, without apology.   A bird stuck in a plastic soda can 6 pack collar does not just sit there and whine and cry about things until someone saves it.  The bird continues to live its life as best it can until either the plastic comes off—or somebody else eats him.  A dog does not care if your best company is in attendance; his butt itches and licking it is what makes it feel better.  Yada yada yada.  I have more examples of what I have seen, but they only get more graphic and unnecessary.  An animal acts the way it’s going to act, no matter what, because that is how the animal is wired to act.  It can change to act the way a human wants it to act, but that does not mean the animal itself has changed.  The animal is simply reacting to its training and current surroundings.  Here’s where we step into pet chimpanzees that kill their owners.  Where trained lions and tigers and bears who have always been the most perfect pet turns around and snarfs up the one who loves them best.  An animal is an animal and will always fall back on its own genetic coding for behavior.

            But, as a human, what do we do?  Have we lost that caveman connection, the one that Jean Auel has so vividly shown us in her amazing books about Earth’s Children, the race Memories—or is it hidden within the deepest regions of the brain?  I find myself thinking I have spent my life studying one animal’s behavior after another…studying man is just studying another animal for me.  I can play the alpha of the pack for the dogs – I can listen to the voices of the ravens and practically tell you what they are saying – I can watch the way a coyote holds his head and tell you which way he is about to run…  I can tell you when I am not behaving as expected in human company…when I am failing to meet expectations like the rest of the herd mammals at dinner parties and whatnot.  I can also tell you I purposely seek out other broken ones like myself, people who do not fit the mold, those who pretend to fit the mold, those who have given up trying and are suffering due to the sharp edges left from the escape of their mold.  These are my friends, my beloved ones.

            I now have roughly four of Temple Grandin’s books.  It may take me a bit to work my way through them all, but I am going to stick with it.  I am learning so much about myself, and about the way I do things…it may just help me reconcile the uneasy fit of my current life…not that I am planning to try to fit in more w others…but I can apply some lubricant and make myself more accessible to people who might not have found my work appealing before these changes…

            It’s a journey.  A very interesting journey.