On March 1, 2004, my family and I huddled in a sitting room at Columbia University Medical Center, awaiting the diagnosis of my then-2 ½-year-old grandson. A physician entered and delivered the words we most feared: “He has autism.”
Thus our family’s journey began-a long journey, still in its early stages, yet already more exhausting and frustrating than we could have imagined possible. We watched helplessly as a delightful, apparently normal toddler lost his ability to interact with the outside world. It is as if he’d been kidnapped, or somehow had his mind and spirit locked in a dark hole deep within him. For a grandmother, this has been indescribably painful to witness. For his mother and father, it is heartbreaking.
Now, however, I have a mission, which I share with my husband, Bob, and our entire family. To find the child we lost. To unlock our grandchild from the disorder that has captured him. To restore to his family and the world the active, loving, beautiful boy we so enjoyed those first two years of his life.
This is a personal goal for our family. Yet we know it will only be achieved through a very public effort. Through a concerted national campaign to educate the public about autism, facilitate and fund the best research, motivate private and governmental resources, and, ultimately, find a cure for autism.
As every parent of a child diagnosed with this disorder knows, time is your enemy. Early intervention and treatment can make an enormous difference in an autistic child’s development. There’s not a moment to lose. That’s why my husband and many friends have worked feverishly over the past few months to establish a new foundation dedicated to the more than 1.7 million people with autism in this country and their families, and to the additional 24,000 children who will be diagnosed this year.
The Autism Community Is Not The Autistic Community
The organization is called Autism Speaks, and we are up and running thanks to the overwhelming positive response from the autism community and friends like Phil Geier, former chairman of Interpublic, and especially Bernie Marcus, the co-founder of Home Depot.
Autism speaks … and it’s time for the world to listen. We are dedicated to giving a voice to autistic individuals and their families, hearing their concerns and difficulties, and guiding parents through the confusing thicket of conflicting information about treatments and therapies so that they can make the best choices for their children.
We are committed to bringing existing groups under our umbrella so that the autism community has a single, coherent national platform. Most importantly, we are intent on unlocking the mystery behind autism and the frightening explosion in the incidence of the disability, which now affects 1 in 166 births (up from 1 in 2,500 a decade ago), and, ultimately, finding a cure.
But does the nation really need yet another autism-focused nonprofit? Our experience over the past year tells us we do.
Like anyone, I responded to the diagnosis with a frantic scramble to gather as much information as I could. What I discovered was profoundly discouraging. We had so many questions: Which therapies should our grandson have? How many hours? With whom? For how long? Who can give us the best guidance? What will be most effective? Unfortunately, we discovered the same thing thousands of families discover every year: There are no good answers.
The Wright family-just like every family in this situation-was left to its own devices in assembling a team of specialists. If you have a loved one with autism, you’ll try anything that might help. We did. (And we still are: Our grandchild has failed to respond to some of the most widely used therapies.) The difference between us and the average family is that we didn’t have to sell our house or take on a huge burden of debt to pay for treatment. And the costs are staggering-well out of the reach of most people, even those with the most generous health insurance coverage.
What has really shocked me is how little help there is. So much research needs to be conducted. But first, it must be funded. Moreover, because so little solid data exists, clinical trials on drugs or treatment protocols are exorbitantly expensive. One of the main goals of Autism Speaks is to develop a central database of 10,000-plus children with autism that will provide, for the first time, the standardized medical records that researchers need to conduct accurate clinical trials.
This will significantly reduce the costs of the major studies that will lead to concrete progress. At the same time, we will push for much-needed public-sector and federal funding. Autism is the most widely diagnosed serious developmental disability in the nation, yet autism research receives only $15 million per year from private sources, compared to more than $500 million for conditions like childhood cancers, muscular dystrophy, juvenile diabetes, and cystic fibrosis-all of which combined together are less common than autism.
Every day, 68 children are diagnosed with autism. Nearly three per hour. Why, given the alarming incidence rate, has there been no comprehensive national effort focused on autism? Here’s one answer: Such an effort must be driven by those with most at stake: the parents of autistic children. Yet these parents-and I’ve met many of them in recent months-are exhausted. They are broke. And they are discouraged. It’s all they can do to get through the day, much less call their congressman about autism funding.
Too many parents go to bed each night praying that one day their child will look them in the eye, smile, and say, “Mommy.” My daughter is one of them. My husband and I are launching Autism Speaks for her, and for all the families stricken by this disorder. The journey that began a year ago in a doctor’s waiting room is now a march. Many good people-perhaps you included-stand ready to join us. The pace is quickening, and, God willing, we won’t stop until we have conquered autism-one child, one voice at a time.
Suzanne Wright is the co-founder, with her husband, Bob, of the Autism Speaks Foundation.
Bob Wright is vice chairman of GE and chairman and CEO of NBC Universal. You can learn more about Autism Speaks at www.autismspeaks.org or by calling 1-888-AUTISM-5.
More With Suzanne Wright
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.