Reaping Day

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Effie reads a name during Reaping Day in the Hunger Games

This past week, everybody’s been talking about  the new CDC Autism statistics and  the movie release of The Hunger Games.

Mother waiting, as her child's name is picked from Effie's glass bowl

The rate of Autism is now 1 in 88 children.  1 in 54 boys,  1 in 252 girls. Families with new babies nervously wait for each developmental milestone, hoping that their child won’t be the one in 88. Anxiety builds to fear when a child isn’t talking by their second birthday.   Think of the mother in the Hunger Games waiting, with hope, despair, and defiance as Effie Trinket gleefully pulls her child’s name out of a glass globe.  Families hope that some other child’s name will be read, and feel relieved and guilty if their child is passed over, at least this time.

There is a lot of discussion about Autism statistics.   Many authorities have said that the rise in Autism is false, that the statistics just reflect a widening of diagnosis.  But, when factors are teased out carefully, as in the California Department of Developmental Services data,  it is clear that a broader diagnosis only accounts for part of the rise in Autism rate.

The dramatic rise in Autism rates is a mystery.    So why aren’t young parents panicking? Why aren’t they demanding answers?  This is a huge epidemic, and yet…….are we allowing ourselves to be snowed by these experts who deny that the epidemic is real?

The Autism crisis has a familiar feel.  I lived in New York City during the peak of the AIDS epidemic.  It was a scary time, and I jumped in as a volunteer caregiver for people dying of AIDS.  I wore my Silence = Death t-shirt to ACT UP rallies to demand speedy treatment trials. People were dying- – fast – – and there was no time to wait for lengthy clinical trials, no time to wait for the political process to creep forward. Do our children have more time to wait?

Act-up protesters staging a Die-in, New York City 1989

During the AIDS crisis, friends and lovers, as well as people with AIDS, took to the streets.  You never knew who would be the next to fall, so there was no point of safety.  Gay men got tested  for HIV every six months, never safe even with condoms. With Autism, expectant parents face their odds,   hoping that their child won’t be that one in 88.  Once children pass the developmental milestones, they are safe from the Autism epidemic, and parents can move on to worry about PTAs and soccer. The names are picked out of the glass globe once in a lifetime, so  parents can be confident that they have been favored, and their child has been spared.

When I hear prominent authorities claim that there is no real rise in Autism, I wonder if parents are being deliberately confused, to stop us from  demanding answers.  If there is no rise in Autism, we don’t have to look for a new cause.  If genetics are the primary cause, then no action needs to be taken, because there is no epidemic. If the dramatic rise is real, that means there is an environmental cause for Autism.    That means there is someone to blame, but also that there is hope for change.

In the Hunger Games, President Snow said that “a lot of hope is dangerous”. What did he mean?   If  people have hope, they may become unreasonable, and demand  change. In our case, they might demand effective treatment for their children.  If parents of young children with autism knew that intensive early treatment results in 50% of children being at or  near age level by kindergarten, would they  demand insurance companies pay for treatments such as Applied Behavior Analysis? Why do parents accept that insurance doesn’t cover scientifically validated treatment for autism, when it covers treatment for other childhood diseases?    Because it’s still a mental health disorder, rather than medical?

I don’t know what percentage of children get adequate intensive treatment. Mostly they get a little of this and a little of that.   My own daughter had 40 hours a week of Applied Behavior Analysis from the age of 4, and we were lucky to be living in the State of Pennsylvania, which paid for it all. She started late: these days,  children can be diagnosed between 1 and 2 years old, and start treatment earlier. Pennsylvania still pays for early Autism treatment when many states pay for much less. There isn’t enough money to go around, and Pennsylvania is gradually and deliberately whittling away at the treatment they pay for.   I hope it’s enough.People say my daughter was lucky as she was born before the flood of new Autism cases.    But lucky?  Her name was drawn out of the Autism globe, too.   But,  she started intervention in time, and she is part of the lucky 50%. My daughter is attending a small charter high school, in regular classes.

Robot child

When people say that Applied Behavior Analysis will turn children into robots,  I swallow my rage.   I’ve seen what happens when kids don’t have high quality intervention, so  becoming a robot seems a minor risk to me. Again, the robot myth seems designed to throw parents off course. Autistic kids without quality intervention don’t do well.  I’ve seen countless children punished, restrained, and trapped by inability to communicate and extreme problem behaviors.  Children with bodies scarred from self-injurious behaviors. Parents with bruises.  Brothers and sisters who have to hide in the basement during tantrums, and who never have friends over. Families who are lonely and isolated and exhausted, getting up everyday to start the battle one more time.  I feel relieved, and a little guilty that my daughter has done well, as there are so many families and children still fighting for their lives in the arena.

Who is the one fighting for survival?  Is is me, or is it my child?   Up until now it has been me, but now I am waiting for her to take over.

ABA did not turn my daughter into a robot: she is a live girl with a heart, and a brain, and courage, who dreams of traveling to France, and going to college as far away as we will allow.  I am waiting for her to start spinning, a girl on fire.

Learning to paddle solo

The Autism Games: may the odds be ever in your favor…….

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4 responses »

  1. I hope that the whole world reads this. Tommy Hilfiger told us he has a child with Autism, but not for a minute did the frustration of the diagnosis come through in his ad. What will we do with these statistics? Just being aware of them won’t help anyone. How do we get the people to turn around and stop ignoring these real issues?

  2. I love reading your blogs, Julie! I’m so glad you take your knowledge and experiences with your daughter and clients, and put it out there to share with and educate other parents dealing with this dreaded diagnosis. I was definitely a “parent in waiting” with both of my boys when they didn’t talk until 3 and 3 1/2 and had sensory issues. I’m so glad I knew to take action early and to get them the help they needed. Luckily, their “issues” were mostly speech related (not autism)and today, they are doing awesome, but I’m not sure where they would be without all of the therapy they received.

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