April is Autism Awareness Month

Before April ends, I am re-posting this entry from my former finicky iWeb blog in honor of Autism Awareness Month (minus the original comments).  

The Puzzle

You should write a book about autism.  I have heard this more than a few times.  First of all, I am not presumptuous enough to think that I can write a book.  And second, if I wanted to write a book it sure as hell wouldn’t be about autism. I hate books about autism, especially the ones with happy endings.  Sour grapes?  You bet. 

Autism, aka Pervasive Developmental Disorder. Here’s what it’s like.  It’s like being given a death sentence for your child.  The diagnosis (of any developmental disability) steals all of your hopes and dreams that your child will ever lead a normal life.  And the sentence lasts for decades. You mourn your loss not for a grieving period, but for a lifetime.  There is no closure as in there is in physical death.  Autism robs your freedom, it makes you physically ill, it makes you resentful and it engulfs your life so totally in ways that you could have never imagined.  If you let it.  And, that is at first, thank God.  Then you wake up and recognize that there is a long, rocky road ahead and you know that you will need all of your strength.  Chin up.  There’s work to be done.  The nightmare is just beginning.

The Diagnosis

At eight months pregnant with my second child, I unpacked our family into a brand new home in the bright, shiny suburbs of Cleveland.  (Imagine bright, shiny and Cleveland in the same sentence, but this is not fiction.)  My son Joey was two and a half at the time.  He was a quiet, beautiful child. He did talk. He laughed. He hugged. He developed normally; no red flags just yet.  But after the move, he became withdrawn, less verbal, but echolalic, and more perseverative. I didn’t wait very long to voice my concerns to our new pediatrician. We agreed that Joey might be experiencing a difficult adjustment to his new home.  Lets give it time.  Time is one thing, in retrospect, that we should never have given it.

So, after a few months of no progress, I insisted on the name of a pediatric neurologist; I wanted an evaluation.  After a whole fifteen minutes of his valuable time, the neurologist said, no, Joey wasn’t autistic.  This was the first of our many encounters with the charlatan of false hope.  But still…that nagging suspicion. What was autism anyway?  This was 1986.  No instant answers via the internet. No internet.  Only a small suburban public library available for research. I managed to find addresses for national agencies on disabilities and I wrote away for information.   I read everything about autism that I could get my hands on and became physically ill.  I was scared to death. What were we going to do? How can we fix this? Off to a speech therapist now.  Joey had become considerably less verbal since my initial worries were brought to the attention of the pediatrician.  So, now he was labeled “autistic-like.”  Sounded better.  More hopeful. Advice: encourage social development.  Off to preschool.  They were great at Play ‘n’ Learn.  The teachers worked with him in the best capacity of regular pre-school teachers, but nothing seemed to improve in any world other than in the hopes of my imagination.

On a frozen, rainy, gray Ohio afternoon in the winter of 1987, sitting opposite a clinical psychologist at Rainbow Babies and Children’s Hospital in Cleveland, we received our official diagnosis after long weeks of testing.  Joey has Autism.  He will need special education, and it is unknown what the prognosis will be as he approaches adulthood.  He may be able to function on his own, but it is likely that he will not.

Death sentence.

EIC

After a river of tears and weeks of crushing despair, it was time to forge ahead.  What can I do?  How can I improve our situation?  I was directed by our Westlake school district to a place called EIC (Early Intervention Center) West.  Yes, there was also an EIC East.  It depended upon what side of Cleveland you were located.  It was a program, run by child psychologists and learning disability teacher consultants, for families with children under the age of six diagnosed with developmental disabilities.  (Developmental disability is a term used to describe a life-long disability attributable to mental and/or physical impairments, manifested prior to age eighteen.) Each family was taught a unique program, based on positive reinforcement behavior modification techniques especially designed to help the individual child achieve his or her potential.  “Normal” siblings were welcome; they were in fact an important component of the program as “models.”  This house of hope and hard work, recycled in an ancient brown brick Catholic school, was a place where magic happened.  Maybe not always to the children, but to the parents if – they were open to learn.

For about nine months, five days a week I had both kids up and dressed early (Joey was by now four years old and Lori was two and a half).  There was nothing more important that I had to do. We were at the center by 9 AM. I was intensively instructed in language stimulation techniques and behavior modification.  I was taught to practice my skills during individual sessions with Joey, run by a case manager, and by helping out in one of the classrooms, as well as encouraged to consistently implement the praise and ignore techniques at home.  This was a time in the history of autism treatment before Dr. Lovaas and his ABA (Applied Behavior Analysis) methods were available to everyone as standard practice for young children with autism, as they are now.  But it helped.  Praise all positive behavior, ignore the negative.  This went against just about every way that we, as parents, have been conditioned to respond to our children by society.  It was the hardest thing to ignore the tantrums and they escalated, as I was warned that they would.  But then they subsided and were replaced with some appropriate verbal behavior. Amazing.

The best part of EIC was the time spent in the “break” room, a basement area converted from boy’s lavatory, sharing tears and support with parents of other imperfect children.  Women (and a few dads) of all cultures, colors and income levels sat together and came to terms with what would be life from that point forward.  No one cared about race or religion or designer clothes.  The only thing that was important was your child. Someone put a flower in a brightly colored pot and placed it in a defunct urinal, a happy note of optimism. Beautiful things can grow in a toilet.  They did, in this place – as support, respect and friendship.  I worked for EIC following our program completion, as a case manager. The most significant part of my dealing and healing was due to the act of being able to help other parents also come to terms with autism, ADHD, ADD, Down Syndrome, mental retardation and other disorders.

The Stages of Grief

Denial, anger, bargaining, depression and acceptance.  I bounced around in these stages for years.  I’ve come to terms with autism, but since I haven’t yet given up looking for answers, I’m not sure that I’ve totally accepted it.  I hope that I never do.

Trials and Errors

Over the years, keeping up with the latest and greatest treatments, we pursued things that we heard about through research publications and seminars. We tried anything that was non-invasive (or even maybe a little invasive) in the hopes that it might help.  If we didn’t try it, I reasoned, it might have been the miracle we missed, our “window” of cure.

1. Mega Vitamin Therapy (B6) tasted horrible.  We struggled for years mixing it in juices, applesauce, ice cream, etc.  To this day, my son will not drink orange juice.

2. Auditory Training. Two weeks in North Jersey so that Joey could receive two sessions a day of sound therapy via headphones from specially trained audiologist.

3. DMG. Dimethylglycine. Another biological supplement.

4. Testing for Landau-Kleffner Syndrome (twice). This subgroup of autism held out hope for a treatment.  Joey fit the bill for most of the features, but no seizures.  The testing consisted of 48-hour sleep EEGs, 2 days and 2 nights at Children’s Hospital of Philadelphia.

5. Facilitated Communication.  Glorified Ouija board effect.

6. Secretin Infusions. Big in the 90s. A hormone given intravenously, believed to promote recovery from autism.

7. Gluten free diet. Purported as a cure by those who were probably not autistic anyway.

8. Milk free diet.  Same as above.

9. Sensory Integration. A specific type of occupational therapy that focuses on the balance or vestibular system.

10. Cranio-Sacral Therapy.  Another type of occupational therapy focusing on the spine and skull.

Did any of these therapies help?  I don’t know.  But we had to try.  My list didn’t include the treatments about standing upside down in the middle of the street and spitting wooden nickels or the one about sprinkling bread crumbs in a circle at the foot of my son’s bed at exactly 2:48 AM every Thursday in a year that is divisible by 4.  

Living with Autism

A long time ago I read a book called Parents Speak Out. It included a collection of essays written by parents of autistic children of all ages.  I lent this book out and it was never returned but the most memorable quote, for me was “Autism is an effective cure for caring too much about what people think.”  Or words to that effect.

So what do you do?  How do you live? You try to live a normal life, keep things in balance.  But you know that your life is not normal by the standards of a sane world.  It’s just become your normal.  You don’t get a break; you are on constant watch for inappropriate, dangerous behaviors.  You have a minimized circle of friends because you can’t go out much.  You have to be home at 2:30 every day because his school or day program ends at 2:00.  So you can’t have a full time job. You can’t stay at an event past the point when the autistic person wants to leave or it might cause a hand-biting, crying freak-out.  You can’t go out to dinner alone with a spouse or to a concert with friends without complicated pre-planning ahead of time.  You have to bite your tongue, but sometimes you don’t, when people complain to you about all the things that their “normal” child does.  You want them to realize just how lucky they are that their children can talk back, can fight with their siblings, can lie, can come home late and will live independently.

But you can make the most of things within your limits, autistic person in tow.  You can do daily things like go to the supermarket, or take a trip to the mall once in a while, or go to a restaurant (if you don’t mind the rituals of spinning five times before sitting down, finger counting after situated and plate lifting to be ensure that the china manufacturer logo is facing the right direction). You can even experience some things as a “normal” person might– if one spouse stays home with the child. You come to really appreciate a select few of your extended family – only your sister and one sister-in-law (of five) are comfortable, brave or even care enough to stay with your son so that you can have a break, stay later at work or be present for a stem cell transplant for your other child.  Silver lining, and it’s a big one: You get reminded on a regular basis just what exactly is important in life.  You do meet compassionate teachers, special needs aides and professionals and you are comforted that such wonderful do people exist in this world.  And you make “other” friends, parents of disabled people who know what you go through every single day, as only they can.  People who profoundly understand the sinking, sickening feeling so deep in your gut that you experience when you dare to think of what will happen to your child when you are no longer here.

Here’s to the parents who did everything they were supposed to do yet still have a child who is disabled. No magic cures for us. But it’s never too late to pray for a miracle.

This is dedicated to parents of older autistic people, whose children have not had the benefits of all that has transpired in treatment options during the last twenty-five years.

In 1987, when Joey was diagnosed, I remember the statistics for autism as about 1 in 2,500.  The current stats for 2010 are 1 in 110.  What the heck changed?  I don’t buy the vaccination causation theory.  I think that the rise is caused by a shift in diagnostic criteria, which is why so many people who claim to have autism can be “cured” or can function in a normal life. It’s easier to cure something that doesn’t exist.  Just my opinion.  And sour grapes.