Why we must turn April into Autism Action Month
April 11, 2017
By Lisa Ackerman - Contributing writer for the OC Register
Over the past 17 years I have served as the executive director of Talk About Curing Autism. TACA is a national nonprofit that is on the front lines of helping families that have children with autism. I have dedicated my life to understanding autism and the impact it has on the thousands of families who come to TACA for help. My perspective comes from what I have witnessed during this time, the stories that parents have shared with me along with their struggles and successes.
Autism Awareness Month must be a strong call for action. This is why it matters and how it impacts everybody in our community:
- Autism is a devastating neurological and biological disorder. Autism typically presents in children between the ages of 18 months and five years of age. In the 1980s the rate was estimated to be 1 in 10,000. In 1995, 1 in 1,000. In 1999, 1 in 500. In 2000, 1 in 150. In 2004, 1 in 125. In 2006, 1 in 110. In 2008, 1 in 88. Today, the CDC officially states that autism affects 1 in every 68 children. The most recent direct parent surveys suggest that the rate may be as high as 1 in 48. This year alone, more children will be diagnosed with autism than AIDS, diabetes, muscular dystrophy and cancer combined. Any condition that harms 1 in 68 children must be dealt with systematically and with a keen sense of urgency.
- Autism affects mind and body alike. In addition to the traditional behavioral aspects of autism, most of the children diagnosed today present with significant concurrent health issues: seizures, immune system dysfunction, gastro intestinal conditions, neurologic disruption and metabolic and mitochondria disorders. Parents have known this for years. Unfortunately, because we’ve been so busy debating whether the issue is real that until recently, these issues have been frequently ignored by the medical community and often go unaddressed. We must work together to fully understand this condition and identify how to fight it.
- Autism is not a “game over” diagnosis. For many, autism and the often-associated biomedical issues are treatable. With appropriate early intervention, unique to each child’s needs, outcomes can be changed. We tend to see significant improvement in behavior, motor skill and language as the underlying health issues are addressed. The lifetime cost of not addressing these issues for an individual with autism averages $2.4 million. The human cost is much higher.
- Autism is not kind and it’s not fun. Just ask any parent or child (if they can communicate) dealing with autism. Families are ill-prepared to handle the stress on marriage, dealing with medical, behavioral, legal, schooling, insurance, feeling powerless to help their child, and the associated financial strain. It’s not about sharing nice stories, walks and lighting everything up blue for a month. April should be a month where we acknowledge the reality and fire up our conviction to do something about it.
- April is Autism Awareness Month — Take Action! I wake up every day and think, just who is it that’s not aware? Certainly, not the families who have children with autism. Can it be the schools who are overwhelmed by the influx of students with disabilities? They are dealing with children who can’t speak, can’t learn, can’t behave and have a myriad of labels for learning disorders that weren’t there 30 years ago. How about the physicians who have crowded waiting rooms with children they don’t know how to treat or the physicians who know how to help — but have year-long waiting lists? Perhaps it’s the behaviorists, speech therapists, occupational and physical therapists, who can’t staff fast enough to address the need just from the families that can afford their services. And it certainly can’t be our elected officials who are consistently lobbied by desperate families pleading for engagement.
Chances are someone you know has autism in their family ... or sadly soon will. Don’t let them become just another statistic. Let’s realize this is a national emergency that will have an impact on generations to come. Get educated. Get engaged. Get loud. The time to stand up and take action is now!