The 5 biggest challenges the autism community faces
Ann Gibbons, Senior Regional Director of Field Development for Autism Speaks, has been a long time advocate and voice in the autism community, and is an integral part of the Autism Speaks team. She is based in Washington, D.C. and oversees all of the field chapters in the Eastern part of the United States. Ann is also an autism mom to Phillip who is in his mid-20s.
She joined us live in studio during Friday's Autism Speaks to FOX 5 telethon to share the five biggest challenges facing the autism community, which are:
1. AUTISM NUMBERS ARE INCREASING AT AN ALARMING RATE.
According to the CDC, 1 in 68 individuals has autism (1 in 42 boys). The ramifications are significant for not just those struggling with autism but for society at large. From a financial perspective, the estimated 2015 costs of autism are on par with estimates for diabetes and attention deficit and hyperactivity disorder (ADHD) and exceed those for stroke and hypertension. The average cost of the disorder for a family affected by autism is $60,000 per year and the annual cost to society is currently estimated at $265 billion. If (when) autism's prevalence continues the steep rise seen over the last decade, the projected costs will top $1 trillion by 2025.
2. WANDERING AND SAFETY MAJOR CONCERNS
People with autism are seven times more likely to encounter law enforcement; communication difficulties and atypical behavior can result in serious misunderstandings; people with autism are more likely to be victims of crimes; nearly 50 percent of people with autism wander or elope from safety; and accidental drowning accounts for approximately 90% of lethal wandering outcomes. To best address the safety needs of the community, Autism Speaks facilitates a two-pronged approach including Family Safety Fairs and Autism Awareness Training for First Responders.
3. ADULTS WITH AUTISM
What happens when the school bus stops coming - Increasingly, parents of teenagers and young adults with autism are seeking assistance for transitioning to adulthood, especially as it relates to continuing education, housing and employment. Despite the extraordinary need, only 24 percent of caregivers reported that their family member living with autism is currently on a waiting list to receive housing and residential services. In addition, national data shows the majority of adults with autism are either unemployed or underemployed, with estimates as high as 90 percent. Autism Speaks hosts two local transition town halls each year to help connection families to solutions for these problems.
4. SIGNS OF AUTISM, EARLY SCREENING/DIAGNOSIS
According to the CDC, the average age of diagnosis is 4-5 years, but a reliable autism diagnosis can be made as early as 18-24 months. While early detection is critical, research shows that many parents have very little knowledge about autism and its symptoms. Many studies have also documented that racial ethnic minority populations and those of lower socioeconomic status are diagnosed later. Autism Speaks has over 40 toolkits, including the 100 day toolkit for the first 100 days post-diagnosis and has tools to help generate awareness so parents know what to look for if they think their child has autism.
5. LACK OF ANSWERS
We still don't know what causes autism and what the different types and subtypes of autism are: That is specifically why Google and Autism Speaks are creating the world's largest genomic database on autism. This unprecedented genome database will provide open access to the whole genome sequencing of 10,000 individuals and families affected by autism. It will advance the breakthroughs in understanding, diagnosis, subtyping and personalized treatment of autism and revolutionize the entire field of genomic medicine.
More: Autism Speaks to FOX 5