Tuesday, March 15, 2011

Autism Thoughts from 2007

I've been cleaning old documents off of my computer in anticipation of Justin's fixing it for me and I came across this article I wrote back in April 2007.  It's amazing how much things have changed in just four years, but now the numbers are 1 in 110 children currently on the spectrum.  Anyway, I just thought I would share, since it never was published:

            My eight year old son, Joey, was diagnosed with autism on December 9, 2001.  He had just turned three years old.  The initial psychological evaluation, done by the local early intervention program, said “Joseph presents himself as a quiet youngster who prefers to be left alone.”  This is the way we remember him when he was little.  At three years, he could say only five words and didn’t understand most conversation.  He couldn’t tell us “yes,” wasn’t pointing, wasn’t playing well with other children.  In fact, if approached by other children, he would usually back away.  And we couldn’t even conceive of beginning potty training.
            I have a hard time remembering what Joey was like as an infant.  My husband says he was always quiet, he didn’t cry very much.  I remember thinking what a good baby he was.  With two other little boys to take care of, there was certainly enough to keep me busy.  I’d been told that third babies were easier, and I fell into that with an ease that, looking back, is scary.  Not noticing the signs early enough, did I miss something that would have helped him later?  In fact, Joey hit all of his developmental milestones in his first year.  He sat, crawled, walked, said words, all at the right times.  But by the age of two, it was clear that Joey was developmentally behind the other kids at his preschool.  He had lost most of the ground he had gained.  The normal behaviors – words, expressions of delight and dismay, pointing in excitement to draw my attention, appetite – all those things were disappearing.  I was profoundly scared at what we were dealing with.
            The pediatrician kept telling me not to worry.  Kids develop at their own rate of speed.  Some are like a bullet train, others come along more slowly.  But by the time Joey was two years old, I wasn’t buying it.  As I took more and more notice of what was going on with my son, I realized that this wasn’t just slow development that would catch up in time.  Joey had a problem.  The neurologist we took him to told me Joey had autism.
            In looking back at those early days after the diagnosis, I wish I had kept a diary of Joey’s symptoms and how we dealt with them.  It’s hard to remember five years ago.  What was he doing?  Did he say anything?  Did he have his own language?  How exactly did he react to the other children?  It’s so hard to remember, but I can remember the fear that he would never be normal, never fit in with the other kids.  What kind of adult life would he have?  Would he ever be able to hold a job, get married, have a family?  In most cases of autism, the answer is no.  There is a great burden on the families of autistic children, and parents of autistic children often spend their golden years caring for their disabled child.
            There are so many questions and so few answers.  With the government’s passage of the “No Child Left Behind” Act, school systems across the country push for mainstreaming of autistic children in regular classrooms if at all possible.  This brings up the question of fairness, for both the autistic child, and the children not afflicted with the disorder.  So often the autistic child is in his own world, removed from what is going on around him or her.  Autistic children do strange things, like flapping their hands and bouncing on their toes.  They have trouble sitting still and often do not appear to listen.  Untrained teachers see them as defiant, because they often appear not to be listening.  They have trouble asking for help when they need it, if they can ask at all.  They make strange noises, have to read aloud to understand the words (assuming they can master reading), distract the other children.  Is this truly “no child left behind?”
            Joey has successfully navigated kindergarten, first, and now second grade in a normal classroom.  But at what cost to himself and the children around him?  Do other children become more empathic when they are placed in a class with an autistic child?  Or is it just more difficult for them to learn what they need to know?  We struggle with these questions every day.
            In some ways, we have been extraordinarily lucky.  Joey is very high functioning.  He is brilliant at math.  He can read.  He is able to talk to us, unlike so many autistic children.  The parents of an autistic child become adept at figuring out what their child wants.  In Joey’s case, his routine is his life.  Weekends, trips, school breaks and holidays throw him for a loop.  He is governed by the calendar and the clock. We have developed routines at home so that he can be comfortable, trying to give him a sense of routine outside of the classroom.
            I treasure the speech that we’ve been given.  Joey can answer questions, tell me goodnight, tell me he loves me.  On the opposite side of the coin, though, are the obvious patterns of autism.  He is fascinated by video and computer games, and obsessively repeats phrases and directions from them.  Sometimes we have to insist that he cannot talk about his video games, but must talk about something else.  He still receives speech therapy through the public schools, but the amount has been steadily cut back year after year.  It is my belief that the county has limited funds and limited personnel, and often the services he receives are only what the county is willing to provide within the confines of their budget.    It is hard to find qualified special education professionals and, as the number of children diagnosed with autism continues to rise, this has become a crisis.  Joey needs a full time aide in the classroom, but we have been turned down time and again.
            Joey’s occupational therapy has also been cut back by the school system.  In 2006, we took him to a private rehabilitation center.  Their recommendation was that he receive bi-weekly school-based occupational therapy services, in addition to outpatient services.  They found he needed assistance in visual attention, motor control, visual processing, and self help skills, in addition to needing assistance with his sensory integration, the ability to process the world around him.  They found him to be hyperactive, and that he tends to giggle, laugh and squeal as his level of arousal increases.  I took this evaluation to the school system, to no avail.  They continue to offer him only 30 minutes a week of occupational therapy, and 20 minutes of speech therapy.  Again, I believe this is a function of budget restraints in our school system.  It is also my belief that the free appropriate public education Joey has been promised is being hacked to bits by politics and budget restraints.
            When I was desperate for some answers, and for some professional recommendations, I took Joey to the University of Virginia in Charlottesville.  Dr. Kenneth Norwood, an autism specialist, found that “Joseph will require significantly greater in classroom support as well as Occupational and Speech Therapy to be successful.”  Still the school system has not been forthcoming with these services.  For approximately 30 minutes a day, Joey does have an aide in the classroom.  He relies on his aide to help him process what is going on around him, and what he is supposed to be doing at given moment.  But she is only there for a very brief portion of his school day.
            I have met with Joey’s second grade teacher on several occasions, and it her opinion that a full time aide would be detrimental to Joey’s progress in the classroom.  However, this is the same teacher who claims that Joey “refuses” to do his work, work that she “knows” he can do.  When I asked her if it might be the case that his “refusal” isn’t actually a symptom of his autism, she disagreed with me, despite her lack of training in special education.  Joey isn’t a defiant child.  He simply needs an adult to point him in the right direction.  Even more infuriating, the same teacher also claims that some of his autistic behaviors are “cute.”  Autistic behaviors are not cute.  They are behaviors that we need to work to eliminate if we ever expect Joey to live a normal, independent life.   Perseverating on the schedule for the day, with no ability to be flexible, is not an adaptive skill.  Telling his teacher that she has to turn over the calendar because the month has changed, and then being insistent to the point of annoying until she does so also is not an adaptive behavior.  Autistic children need to be taught some flexibility toward the world around them or they will never be able to cope with the outside world.
            I can remember an incident when Joey was two years old, before we had a diagnosis.  My mother and I had taken him and my two older boys to a small county fair.  Joey spent the entire trip with his hands over his ears, screaming.  We finally had to leave.  Joey’s lack of flexibility, his sensitivity to noise, and his insistence on routine has severely curtailed our family life.  He has accepted only a small number of foods, and they are foods that are not generally available at restaurants.  So we don’t go out to eat.  Haircuts are frightening to him, as are any unexpected noises, too many people, long trips in the car, going somewhere he’s never been, motel rooms, and generally anything new and different.  We are a family stuck in our home, unless we can prepare Joey well in advance for a change in routine.
            Does Joey know he’s different from other children?  I truly don’t know, but I got a clue recently when I told him he needed to stop making noises because other people might think it was strange.  He put his hands to his eyes and bowed his head, leaning against me in obvious distress.  I felt about two inches tall.  I was trying to change something that he couldn’t help, and I felt like the worst mother in the world.  I hugged him and told him it was okay to be different, and that he should just be himself.  If I can’t accept him for what he is, how can I expect others to?  It’s hard being the parent of a child that’s different. I had all these dreams for my children, and the thought of one of them having a lifelong disability is enough to shake my faith in the world around me.  I’ve always thought of Joey just as Joey, but as he gets older, I am becoming aware of how the rest of the world might see him.  Yes, it’s okay to be different.  But in middle school, in high school, for the rest of his life, will he want to conform to the standards of the people around him, to belong, to fit in?  Is it my place to try to help him do that, or is it my place to simply let him be himself, different from the other children, but still loveable, affectionate, sweet, curious about the world around him?  I don’t know the answer, and I’m afraid that no matter how I address this issue, it will be the wrong way.
            The latest figures from the CDC show that 1 in 150 children is somewhere on the autism spectrum.  This is an epidemic.  We don’t know the cause, there is no cure, and society is lagging woefully behind in its ability to deal with the explosion of diagnoses of children on the spectrum.  Although there are more children with autism than there are with pediatric cancer, juvenile diabetes, and Down syndrome, society appears to just be starting to become aware of the need for more research, more money, more trained special educators.  It is believed that autism is caused by a genetic predisposition and then triggered by something in the child’s environment.  Because of the sometimes regressive nature of the disease, many parents believe that a mercury preservative called thimerosol contained in vaccines in the 1990’s triggered their child’s autism.  Although the CDC has failed to establish a link between the mercury in vaccines and autism, many families are convinced that vaccines are the trigger.  It certainly may be a coincidence that the number of diagnosed cases of autism rose with the rise in the number of vaccines required for young children, but this is a question that desperately needs to be resolved.  
            The sharp rise in diagnosed cases of autism has caused a flurry of interest in both the scientific community and in the political arena.  Last year, autism finally got the attention of federal lawmakers, and The Combating Autism Act was signed in December of 2006.  The bill authorized nearly a billion dollars over the next four years for research and intervention.  Certainly a step forward, but still not enough, with 67 children being diagnosed on the spectrum every day.  One in 94 boys is on the spectrum.  The disorder strikes boys much more frequently than girls, with a 1 to 4 ratio of boys to girls.  We need to find out why.
            More recently, senators Hillary Rodham Clinton (D-NY) and Wayne Allard (R-CO) introduced a new legislative initiative to increase access to treatment, increase intervention, and increase support services for individuals with autism.  Senator Clinton has called autism an “epidemic” and says, “This epidemic requires our smartest, best, comprehensive response and we must continue our efforts to provide treatment, care, greater research and understanding of autism spectrum disorder.”
            With the possibility of greater funding, treatments and a possible cure may be on the horizon.  Discover Magazine printed an article in March, 2007 which advances great hope for treatments and a cure.  The article cites several possible causes of autism:  vaccine reactions, atypical growth in the placenta, abnormal tissue in the gut, inflamed tissue in the brain, food allergies, and disturbed brain wave synchrony.  (Discover Magazine, March 22, 2007)  The article also emphasizes the interaction between the genetic predisposition to autism and environmental triggers.  It appears that multiple factors are at work in this devastating disorder, similar to the many different types of cancer and their causes.  Both diseases are extremely complex, hard to diagnose, hard to treat, and in the case of autism, impossible to cure.
            As fast as the autism community is attempting to find cures and treatments for autism, it is not fast enough for parents currently dealing with the disease.  I know in our house, autism is the enemy we deal with every day.  My beautiful child has to live his life differently from his brothers, and to me this is not acceptable.  I want him whole and normal, living out his dreams, going to college, having a family, and a career.  We may never see that, or we may see great improvement in Joey.  Treatments may get better, a cure may be on the horizon.  It certainly helps us that autism awareness is at an all time high.  We still struggle every day to handle Joey’s autism though, and frustration is hard to deal with when we know that somewhere inside, Joey is fighting to get out.  I can only hope that the medical community hurries its work in time to save my little boy.

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