On the eve of Autism Speaks' first-ever national policy and action summit in Washington, D.C. , Co-founder Suzanne Wright explains the urgent need for a national plan.
By Suzanne Wright
Date: November 11, 2013
This week is the week America will fully wake up to the autism crisis.
If three million children in America one day went missing – what would we as a country do?
If three million children in America one morning fell gravely ill – what would we as a country do?
We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.
We’d leave no stone unturned.
Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.
We’ve let families split up, go broke and struggle through their days and years.
No more. Tomorrow in Washington, D.C. we will gather an unprecedented number of bipartisan officials, congressional leaders and experts in every area of autism for a three-day summit. We will demand a national response.
Don’t our families deserve it? America has always been about its great people.
Yet, we seem to have forgotten our children - and our children are our future.
Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.
These families are not living.
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7.
This is autism.
Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.
This is autism.
On the good days my daughter Katie and all the other moms out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally. Physically. And especially emotionally.
Maybe they have been up all night caring for their teenage child who’s having a seizure.
Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.
Maybe their child has been trying to bite them or themselves.
Maybe they can’t afford the trip to a doctor specializing in autism.
Maybe there is a waiting-list for ABA, speech and OT.
Maybe their insurance won’t pay.
Maybe they don’t have the money to pay a special lawyer to fight for school services.
This is autism.
If any of this sounds familiar, you know autism. And if you know autism, you know we are looking at a monumental health crisis. And, we have no national plan.
What I described above is really just the beginning. In the next ten years, 500-thousand Americans with autism will be growing up and out of the system which means they will no longer qualify for the services they rely on every day.
And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?
And, if they do – who cares for these children?
There is no national plan to build a city for 500-thousand people.
So let’s dial back a minute and consider the babies being diagnosed with autism every day in this great country. Do we have a plan for them? Are they all getting the same medical care and therapies across the board? Are we doing anything to guarantee they get a fair shot at a productive future?
We know children from minority and lower income families are not getting diagnosed as early as they should be, so their treatment begins later which might decrease their chance at progress.
How about in school? Is there a national curriculum for our children? Are we encouraging teachers around the country to share with each other lesson plans and methods that work for them? Is there collaboration?
But - there is no national plan.
Yet - our future depends on it.
Financially, we estimate it costs 2.3 million dollars to care for one person with autism for their lifetime, and it will be well over $137 billion dollars for all our children.
But money aside, these are our children. The late scholar Neil Postman once wrote “Children are the living messages we send to a time we will not see.”
What is our message?
We can’t even craft one – without a national plan.
Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.
This is a national emergency. We need a national autism plan – NOW.
We are heading to Washington with a call for action on a national plan – NOW. We are asking our leaders to respond to autism with the urgency it deserves – NOW.
Washington – here we come – because we need to help our families – NOW.
Suzanne Wright and her husband Bob co-founded Autism Speaks in 2005.
You can watch the Wednesday sessions of the summit live here.