Dear Autism Speaks

A bend in the road is not the end of the road... unless you fail to make the turn.
~Author Unknown


Dear Autism Speaks,

Let me first congratulate you for once again making the news. You did an outstanding job coordinating the event at the United Nations, and getting high profile people to work on your latest video release, “I Am Autism." If there is one thing that Autism Speaks does well, it is making sure that people know the name Autism Speaks. Many will probably send you money as well, thinking that they will be supporting the effort to unlock the mystery that is autism.

If only they knew the truth...

If only they knew that many people with autism do not embarrass themselves at parties, temples, or in parks, at least no more than other children do.

If only they knew that autism is vastly different from AIDS, cancer, or diabetes.

If only they knew that there are many families that live with autism every day, with marriages that are stronger than ever.

If only they knew that there are children with autism that can actually speak, and that have hopes and dreams just like everyone else.

If only they knew that there are actually adults with autism that live with it every day...

If only they knew that in spite of autism, there is hope if you just make the turn at the bend.

But they will know none of these things, if they only listen to you.

You see, in your eyes, people with autism don't speak, are disruptive, and cause so much pain and suffering that they tear apart families. In your eyes, people with autism and their families live in isolation and loneliness. In your eyes, people with autism have no hopes and dreams. In your eyes, autism is a ruthless monster that has caused all these things. But there is hope, because in your eyes, Autism Speaks is the white knight that rides to the rescue, the one that goes around the world preaching autism awareness. But that white knight comes with a price, which is why your awareness campaigns mainly focus on fundraising, and not action.

We, the parents of children with autism and the adults living with autism, know better. We are the ones in the trenches every day, fighting for our rights and the rights of our children. We are the ones battling insurance companies and school administrations seeking to deny our needs and the needs of our children. We are the ones raising true autism awareness where it is needed most, with our peers and the peers of our children. We are the ones helping others by doing the little things, like watching children so parents can have a much needed night out together, or providing a microloan to help a family obtain the services they need. We are the ones who truly understand what it means to live with autism.

Autism Speaks, I would like to tell you about a little girl I know. She is a bright, intelligent girl who is more than capable of carrying on a conversation. She loves to go shopping and loves to play in the park. Her dream, one she has had since Kindergarten, is to grow up and be a teacher.

This child is my daughter Helena, and she has autism. Because she is high functioning, because she is highly verbal, because she doesn't create a scene in a park or at a party, because she doesn't keep us awake at night - because of all these things, Autism Speaks, in your eyes, she doesn't exist.

And for that, I am eternally grateful.

Sincerely,

Thomas Dzomba, proud parent of a child with autism

Remembering...

NOTE:  This is a republication of a 2008 post, recounting the horror of 9-11, and the resolve of America in its aftermath. 
We will never forget the brave men and women who lost their lives that day, nor the resolve that always brings America together in the darkest of times.



I see America, not in the setting sun of a black night of despair ahead of us, I see America in the crimson light of a rising sun fresh from the burning, creative hand of God. I see great days ahead, great days possible to men and women of will and vision.

- Carl Sandburg


We interrupt this Experience to remember another experience on this solemn day.

It was a little before 9 am, and life was good. I was 9 months into my new job with the EPA in Atlanta, my wife and I had just moved into our new home in a small town west of town, and we were expecting our third child. One of my coworkers was talking on the phone, and the person he was talking to told him the news - a plane had just crashed into the World Trade Center. We all scrambled to call up CNN on our computers just to see the spectacle of it all.

Then we heard that a second plane had hit the World Trade Center. And suddenly we knew what was happening. Our hearts sunk - we were under attack.

Then came the reports of the third plane the hit the Pentagon, and finally, reports of Flight 93 going down in Pennsylvania. We were in shock. I called my wife and told her the news. And then I prayed.

By 10:00 we were told we could go home if we wanted to - Atlanta has the third largest concentration of Federal employees in the nation working in a tall building with no buildings to impede a plane from crashing into it. Oh, and the world's busiest airport as well. I made my way to the train and began my hour+ commute home, lost in my thoughts. When I got home, my wife greeted me at the door and we just held each other close.

We listened to the news all day as the first tower fell, then the second. We heard the horror stories about those trapped in the rubble, and stories of the incredible bravery of the NYFD who risked their lives - and lost their lives, selflessly trying to rescue as many people as they could. Not to mention the brave people on Flight 93.

And then we fought back.

I don't mean we fought back by going after the Taliban and the other terrorists like we did. We fought back by showing our resolve. I remember Clark Howard, noted economic talk show host, talking about how as soon as the airports reopened he was going to buy a plane ticket just to show he would not be intimidated into not using air travel. I remember the Lowes commercial depicting a neighborhood now full of American Flags as a show of unity. And I remember people of different races, creeds, colors, and political perspectives, putting differences aside to show the world that we will not be intimidated.

It has been eight years since that day. I have not since that day watched the attacks again. I've never seen the movie Flight 93 and I probably never will. I really don't want to relive that day again.

But I will never forget that day, the darkest day I hope I will ever experience on this Earth. I will always remember those who bravely lost their lives, and their families. And I will always remember the American resolve to never, ever let this happen again.

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?