Hello, I’m Geraldine Dawson, chief science officer for Autism Speaks, the nation’s largest science and advocacy organization for autism. I’m also a professor of psychiatry at the University of North Carolina at Chapel Hill. I am here to support families in the military who have children with autism and who are struggling to receive the services their kids need.
I want to thank Representative John Larson and Senator Kirsten Gillibrand for their support of the Caring for Military Kids with Autism Act. This legislation would ensure that military families are getting the support they need, including treatment that will help each child with autism reach his or her full potential and lead a productive, satisfying life.
Autism is a developmental disorder that affects a person’s ability to form social relationships and communicate with others. People with autism also exhibit repetitive behaviors, some of which can interfere with their ability to learn and function. Autism is no longer considered a rare condition. It affects about 1 percent of the population, including 1 in 70 boys. Let’s compare autism’s prevalence to type 1 diabetes – 1 in 400; childhood cancer – 1 in 2,000; and cystic fibrosis – 1 in 3,500. In fact, this year, more children will be diagnosed with autism spectrum disorder than AIDS, diabetes and cancer combined.
Based on metrics used by the World Health Organization, autism represents a significant public health challenge. It is a highly prevalent and chronic condition with an early onset and is associated with significant functional impairments and costs. Its estimated burden is higher than childhood leukemia, cystic fibrosis, and type 1 diabetes. A conservative estimate of the annual cost of caring for people with autism in the United States is $35 billion a year. However, based on the latest prevalence statistics, we believe it could be closer to $90 billion.
The prevalence of autism has risen dramatically over the past several decades, in fact, by over 600 percent. Although broadening of the diagnostic criteria for autism and increased awareness account for some of this increase, experts estimate that approximately 50 percent of the increase remains unexplained. This is one of the reasons why Autism Speaks is currently directing research funds toward understanding the role of environmental risk factors.
The stress experienced by families raising a child with autism is considerable. A study conducted in 2008 showed that compared to other children with chronic health conditions, children with autism are more likely to have unmet needs in the areas of health care and family support.  Families have difficulty finding the services they need. When services are not covered by insurance, they must pay out of pocket, often going into debt. Early intervention, alone, can cost up to $50,000 per year. Often, one parent must quit work to care for their child, adding to the financial burden. Studies show that, as a result, families of children with autism experience high levels of stress.
For military families, this is compounded by the stresses associated with their service. When one parent is on active duty, the other may be facing these responsibilities alone. When a parent returns from active duty, their families may have the additional challenges of a parent with service-related mental or physical health problems.
It is now possible to screen for autism at 12 months of age, and autism can be reliably diagnosed by 18 to 24 months of age. In 2007, the American Academy of Pediatrics recommended that all children be screened for autism at 18 and 24 months of age, and that appropriate referrals be made if autism is suspected. Yet, the average age of diagnosis in the U.S. remains close to 5 years. Children from ethnic minority backgrounds are at a particular disadvantage. Research shows that these families have to go to the doctor many more times before receiving a diagnosis, and the age of diagnosis is much older.
There are effective treatments for autism that can change a person’s course and outcome. Controlled clinical trials have shown that early intensive behavioral intervention significantly increases IQ, language abilities and daily living skills, while reducing the symptoms of autism. In fact, a 2010 randomized controlled trial funded by the NIH and published in Pediatrics reported that 50 percent of children with autism who received early intervention for 2 years had a 15 point increase in IQ.  One third of the children showed an increase in IQ of greater than 30 points. This means that intervention changed these children’s life trajectories, setting them on a course that increased their chances of living productive and satisfying lives. This is not only good for the individual; it results in significant cost-savings for society.
This is why Autism Speaks is committed to passing insurance legislation that provides access to behavioral health treatments for people with autism and why it is crucial that the Caring for Military Kids with Autism Act is passed.
We owe this to the families who are making tremendous sacrifices for our country. It will allow their children to reach their full abilities and become productive members of our society.
I have been focusing on early intervention, but it is important to keep in mind that, in most cases, autism is a life-long condition. While early intervention ensures that each child with autism is positioned to achieve his or her potential, providing on-going support is likewise needed if the child is to realize this potential. Frequently interventions focused on social skills and communication are needed throughout early childhood and adolescence. In addition, autism is often associated with medical conditions such as sleep difficulties and GI disorders. Treating these conditions allows the child to take better advantage of behavioral and educational programs.
Careful planning for the transition from adolescence to adulthood ensures that each individual has the best chance of success in employment or college.
In fact, during the next decade, over a half million adolescents with autism spectrum disorder will be transitioning into adulthood. As a society, we are currently unprepared to address their needs. The cost to society will be real. The bulk of the $35 billion to $90 billion annual cost of caring for persons with autism in our country is spent on adult care.
We lack the services and supports needed for adults with autism to successfully integrate into the larger community. We have few resources to address health-related issues, housing and employment. Providing these services and support is crucial to ensure that every adult with autism reaches his or her potential, while reducing the long term costs of care.
We urge you to support the Caring for Military Kids with Autism Act as one way of addressing autism’s public health crisis.
[For an overview of the briefing and related videos, please see today's post in the Government Relations blog.]