Last Wednesday, April 2, 2008 marked the first annual “World Autism Awareness Day.” The day was created by the General Assembly of the United Nations which voted in November 2007 to establish the annual event date as an opportunity for Member States to raise awareness about children with autism. Various events and lectures were planned around the globe and CNN scheduled all-day coverage about autism. April is also National Autism Awareness Month.
What is autism? According to the Autism Society of America, “Autism is a brain development disorder that impairs social interaction and communication, and causes restricted and repetitive behavior, all starting before a child is three years old. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.”
Autism is one of five disorders considered a Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by “severe and pervasive impairment in several areas of development.”
These disorders include: Autistic Disorder, Asperger’s Disorder, Childhood Disintegrative Disorder (CDD), Rett’s Disorder, PDD-Not Otherwise Specified (PDD-NOS). Each disorder has specific diagnostic criteria which been outlined in the American Psychiatric Association’s Diagnostic & Statistical Manual of Mental Disorders (DSM-IV-TR).
Diagnosed in an estimated 1 in 150 children, autism is the most common Pervasive Developmental Disorder, and the numbers are on the rise. It is estimated that as many as 1.5 million Americans have some form of autism.
Data from the U.S. Department of Education and other governmental agencies indicates that autism is growing at an alarming rate of 10-17 percent per year — and the Autism Society of America estimates that 4 million Americans could be diagnosed in the next decade.
Below are some additional facts about autism, courtesy of Autism Speaks, an advocacy group:
- 1 in 150 children is diagnosed with autism
- 1 in 94 boys is on the autism spectrum
- 67 children are diagnosed per day
- A new case is diagnosed almost every 20 minutes
- More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined
- Autism is the fastest-growing serious developmental disability in the U.S.
- Autism costs the nation over $90 billion per year, a figure expected to double in the next decade
- Autism receives less than 5% of the research funding of many less prevalent childhood diseases
- Boys are four times more likely than girls to have autism
- There is no medical detection or cure for autism
Incidence vs. Private Funding
- Leukemia: Affects 1 in 25,000 / Funding: $310 million
- Muscular Dystrophy: Affects 1 in 20,000 / Funding: $175 million
- Pediatric AIDS: Affects 1 in 8,000 / Funding: $394 million
- Juvenile Diabetes: Affects 1 in 500 / Funding: $130 million
- Autism: Affects 1 in 150 / Funding: $15 million
National Institutes of Health Funds Allocation
- Total 2005 NIH budget: $29 billion
- $100 million goes towards autism research
- This represents 0.3% of total NIH funding
Autism has clearly become the polio of our time and something must be done to reverse its progress. If we don’t act now and dedicate more research dollars to finding a cure and treatment, while also finding a way to convince the health insurance industry to cover the costs associated with treatment we run the risk of losing an expontentially increasing percentage of this generation’s children to autism.
The impact of autism on families is extensive. Emotionally, it can be draining. Mentally it can be consuming. Physically it can be exhausting. Financially, it can be devastating. In addition to the divorce rates of parents with autistic children being higher than the average, many families of children with autism struggle to avert bankruptcy.
It’s no wonder, the costs involved are daunting: from the early intervention and treatment services (which only a handful of states cover) to the lost income from one parent in a two-parent household who must stay home with the affected child while services are provided, autism affects an entire family, not just the individual overcoming it.
Raising a child is stressful enough — raising a child with autism is beyond compare. That is not to say that raising a child with autism is totally unlike raising a “neurotypical” child, it just puts things within a different framework.
I speak from personal experience: my older son, Jacob, who will turn five this September, was diagnosed with autism just before his third birthday. We have come a long way since then, but still have far to go. He is now speaking contextually, exhibiting emotion and is full of boundless energy. Some days are full of joy while others are full of challenges parents of children without autism truly cannot comprehend.
Fortunately Jacob is on the higher functioning end of the spectrum and has many skills that a typical child near his age has (though developmentally he is not functioning at a level consistent with his chronological age). He is a sweet and smart little boy with a curiosity about the world and great potential to do wonderful things with his life.
We are grateful for the services he has received and credit them with a great deal of his progress so far. However, we have also had to aggressively advocate on his behalf to ensure he continues to receive the services to which he is entitled.
Jacob currently receives his applied behavior analysis (ABA) services through the Center for Autism and Related Disorders (CARD) — a worldwide leader in the field founded by Dr. Doreen Granpeesheh. His Individualized Education Program (IEP) is coming up in a month and my wife and I are beginning to prepare for battle with the Saugus Union School District to ensure that he receives the most appropriate and beneficial services.
As a father, Jacob has taught me many lessons about life. but I know I have much more to learn. I now appreciate the small steps in life and applaud incremental improvement, however small, because it represents movement in the right direction. I admire his sweet and loving disposition and marvel at his unbridled joy and creativity. He is a wonderful little boy who has inspired me to become a better father and, frankly, a better person.
For additional information about autism, I encourage you to visit the following:
- Autism Collaboration
- Autism Fact Sheet (NIH)
- Autism Information Center (CDC)
- Autism Research Institute
- Autism Society of America
- Autism Speaks
- Autism Web
- Center for Autism and Related Disorders (CARD)
- Generation Rescue
- Mayo Clinic Profile of Autism
- National Autism Association
- Talk About Curing Autism (TACA)
- Unlocking Autism
- World Autism Awareness Day