How Much Longer?

What kind of world do you want
Think anything
Let’s start at the start
Build a masterpiece
Be careful what you wish for
History starts now

- Five for Fighting, "World"


Yesterday, my daughter was alone, on the school playground.  No one near her; no teacher, even her 4th grade teacher from last year, paying attention to her.  She was by herself.  Jumping up and down.  Playing with her hair.  Stimming.  No one making a move to help her, or redirect her.

All alone.

Yes, her IEP says the school will focus on her social skills.  Yes, the case manager apologized to me and promised to make sure this doesn't happen again.  But why does this have to happen at all?

We are so fortunate that Helena is high functioning.  She can talk. She has a great imagination.  As she learns more about her place on the autism spectrum, and as she gets older, I am confident that she will be able to overcome it, and live with it, and be able to function independently in society as an adult.

Yet like other children on the autism spectrum, and maybe even more so because she is high functioning, there are times when she gets ignored and she does not get the attention she needs.

Still, Helena has it better than J.R., an boy on the autism spectrum who was slapped by his teacher in front of the children in his class and his aide, who recorded the incident using a cellphone.  Or Alex Barton, who was infamously voted out of his Kindergarten class Survivor-style at the urging of his teacher.  Those teachers, fortunately, were relieved of their duties.  But what about those taught by Diana O'Neil, who admittedly bopped children on the head and called them derogatory names, yet is still allowed to keep her job?

Should there be more furor over Dr. Paul Offit, a man who some consider an "expert" on the link between vaccines and autism even though he has never treated a person with autism his entire career?  Dr. Offit has repeatedly denounced any link between vaccines an autism, but how credible is he when he stands to make millions of dollars from the the pharmeceutical industry, specifically the very company that manufactures the MMR vaccine?

It is 09.09.09, and I, along with thousands of other parents and the National Autism Association, want to know the answer to a simple question:  How much longer?

When Helena was 12 months old, she received her MMR shot, and within a month had regressed into significant developmental delays.  She is not alone.  Many parents have seen their children regress after receiving the MMR shot, or after receiving multiple vaccinations at once, be it as an infant or as a toddler.  Yet there can't possibly be a link, right?  It has to be solely genetics, right?  The pharmaceutical companies would never give our children something that would harm them, right?  Just like cigarette companies never knowingly manufactured products that caused cancer, right?  How much longer, Centers for Disease Control?  How much longer, American Academy of Pediatrics?  How much longer, Advisory Committee on Immunization Practices?  How much longer, National Institute of Health?  How much longer, Food and Drug Administration?

The cases of J.R. and Alex Barton and those taught by Diana O'Neil made the news, but what about those that do not have such a high profile?  What about kids bullied and locked in lockers and hit because they don't speak, yet they tremble in fear?  What about schools that offer minimal services in order to comply with IDEA as opposed to offering the support needed to help and autistic child?  How much longer, Department of Education?

President Obama, you are anxious to bring about health care reform in the US.  But where does autism fit in?  Will insurance companies cover treatments and therapies for autism, something most won't do now?  Will you look into vaccine safety and a more appropriate schedule for immunizations, multiple vaccinations at once?    When my daughter was diagnosed with autism seven years ago, the rate of autism among US children was 1 in 266.  Then it was 1 in 250.  Then 1 in 150.  Now 1 out of every 100 children are on the autism spectrum.  Do we need to wait until the rate is 1 in 20 before something is done?  How much longer, President Obama?

Let's face reality - autism is a growing epidemic, yet no one seems to know why.  Or maybe they do know why, but don't want to tell us.  Or maybe they don't want to know.  But we are raising awareness!  It's great that Autism Speaks and the Boston Red Sox and other high profile entities are holding events promoting autism awareness, or maybe they are just raising the awareness of Autism Speaks?  Meanwhile, that ratio keeps getting smaller.  And smaller.  And smaller.

1 in 266.  1 in 250.  1 in 150.  1 in 100.  How low will the ratio have to go?

My daughter has needs, and her needs are just as valid as the needs of every other special needs child.  But my daughter can and will overcome her autism and have a productive life.  I know she will.

But what about the child who can't speak, the child who gets so frustrated he/she bangs their head against the wall.  The child that has feelings, and can communicate nonverbally, but no one takes the time to understand?  The child who is destined to spend their life, their future, in a special home cut off from society as a whole?  How long must we wait before we help them?  How much longer before action is taken?

How much longer, America?