By Lisa Ackerman
“A nation’s greatness is measured by how it treats its weakest members.”
Autism is a devastating neurological and biological disorder that typically presents in children between the ages of 18 months to five years of age. It currently affects 1 in every 68 children (up from an estimated 1 in 10,000 in the 1970s). It is estimated that there are over 3 million people in the United States with autism and over 10,000 children in Orange County with an autism diagnosis.
Many claim that the rise of the autism diagnosis is a result of increased awareness. While that may account for a spike in the count, it’s akin to saying there are more train wrecks because we now know what a train wreck look like. I’ve been around autism for 15 years, and I can tell you for certain there’s no missing a child that is autistic.
Regardless of the dispute of cause and prevalence, there’s no debate over the cost. According to University of Pennsylvania and the London School of Economics the cost of autism to our economy is $237 billion annually. If we don’t quickly figure out what’s going on and how to address this issue, it is estimated that we will be staring down a $1 trillion a year tragedy by 2025. The human toll is incalculable.
Further complicating the financial issue is that children diagnosed in the 1990s are now becoming adults. With the estimated annual cost of care at $100,000, aging parents who can no longer support their children in home and limited living facilities geared toward the adult autism population, parents are questioning who will care for their children when they are gone. This is driving families headlong into a situation where they are resorting to the most desperate measures to what they perceive as a hopeless situation.
It’s time to get off the autism awareness carousel and get on with taking action. April should not be Autism Awareness Month. April should be Autism Action Month.
Autism is not a game over diagnoses. For many, autism and the co-morbid biomedical issues are treatable. With appropriate early intervention, unique to each child’s needs, outcomes can be changed.
Here’s what you need to do:
• Step One: Get engaged. Autism is not game over. It’s game on!
• Step Two: Obtain the diagnosis that best describes your child. Once an official diagnosis has been made, a detailed assessment should be produced that outlines your child’s assets and deficits plus recommendations for appropriate services. The assessment is crucial. Recommended therapies should begin as soon as possible.
• Step Three: Find a physician.
Children with autism often have co-morbid medical issues that can be evaluated and treated by a physician. Behavioral and other therapies that require active involvement of the child are more effective when the child’s health is not compromised. Common medical issues are outlined in the American Academy of Pediatrics Standards of Care for Autism.
• Step Four: Get connected.
Many of the families my organization, Talking About Curing Autism, supports report that the hyper-focus on their child’s needs, combined with the behavioral nature of autism, can result in isolation from friends and family. The divide often also occurs between mom and dad. Divorce, abandonment, child abuse and suicide are all too common. Get connected with an organization in your community that focuses on autism. You need not be alone.
• Step five: Get empowered. Drive change for your family and others.
Families with children diagnosed with autism need to get organized and drive change within their community. Get engaged, and let your public officials know your issues. Reach out to your elected representatives and be counted. Tell your story. Until families impacted by autism get active, autism will continue to be known as the silent epidemic. Get loud. Be heard. You are your child’s voice.
Remember, if autism is not in your life today, it very likely will be soon.
If we are to make progress for our children and other children with similar conditions, we are going to have to make it happen through determination and grit. Today our son, who cast us on our unplanned journey, is preparing to graduate high school and has been accepted to the college of his choice. He participates on the cross country team, acts in school plays and is looking forward to prom. His future is bright.