The following statement from NAA was submitted to the Interagency Autism Coordinating Committee on April 2, 2014.
Click here for information, agenda and webcast for today’s meeting: http://iacc.hhs.gov/events/index.shtml
STATEMENT FROM THE NATIONAL AUTISM ASSOCIATION
INTERAGENCY AUTISM COORDINATING COMMITTEE | 04.08.14
At the National Autism Association, we represent individuals with Autism Spectrum Disorders (ASD) at highest risk of injury or death. This includes those with nonverbal autism, regressive autism, intellectual disabilities, aggressive and suicidal behaviors, and underlying medical conditions.
In addition to advocacy for medical treatment and environmental research, our key issues include autism safety, autism abuse, and crisis prevention.
The population we represent cannot be at your meeting today to advocate for themselves, nor can many of their parents or caregivers. They require around-the-clock care, assistance with basic daily living skills, supervision and protection. Some live in a constant mode of crisis and physical pain accompanied by irritability, aggression, sleep disorders and self-injurious behaviors. Many are unable to effectively communicate, putting them at staggering risk of becoming silent victims of maltreatment and brutal physical, mental and sexual abuse – without the ability to defend themselves. They often suffer from debilitating comorbid medical conditions that continue to go unacknowledged and untreated due to the blatant failure of our federal agencies to direct research funding toward effective treatment.
RISING AUTISM RATES ARE A TRUE INCREASE
As of 2014, an estimated one out of 68 individuals carries a diagnosis of autism, an increase of 30% from the 2012 data. These rough data are sure to be an under-ascertainment of children with an ASD since they are largely based on medical records. In 2006, after the Government Accountability Office investigated “Federal Autism Activities,” their findings showed that while autism research funding increased, surveillance challenges between agencies like Centers for Disease Control and Prevention (CDC) and Department of Education (DoE), needed to be resolved. It is 2014 and surveillance challenges remain unresolved. Further, the CDC reports that the prevalence of autism is much higher in sites that have access to education sources. With the lack of qualitative data, we also remain unclear on what percentage of our population will need ongoing care into their adult years and throughout their lives.
Although other countries share similar prevalence numbers, the autism surge in the United States is still sugarcoated as an illusion of diagnostic criteria changes, along with better overall awareness and diagnosis. As a community focused on the more severe effects of autism, we know these explanations to be invalid. The majority of new autism cases are the result of a very real rise in autism. Resting on unproven explanations only stalls progress for our entire community.
WHAT WE NEED
Treatment, therapy, housing, adult services and supports, abuse prevention initiatives, training for schools, first responders and clinicians, family services, early screening, safety initiatives, meaningful research, and access to critical resources on all fronts are all needed right now.
We also need minority representation and resources. Currently this population is grossly underserved and under-represented in our community and on the IACC. Greater federal efforts need to be made to provide information, resources, services and earlier diagnosis to these families. The level of neglect is both sad and disturbing.
OUR NATION IS UNPREPARED
We are completely unprepared for what’s ahead. Regardless of any DSM changes, criteria or definition changes, if the prevalence of ASD is a loose estimate, and we have no way of knowing the depth of cognitive deficits among our own population, then no doubt we are about play a game of pin the tail on the donkey with our community’s basic needs at stake. We need immediate and long-term solutions in the form of a federal autism strategy or national plan. As federal members and community leaders, you are in a unique position to ensure these needs are met.
We leave you with the names of those who have died from wandering/bolting since last April’s IACC:
Avonte, age 14
Travis, age 4
Christina, age 29
Alyvia, age 3
Mikaela, age 9
Owen, age 7
Drew, age 2
Freddie, age 13
Christopher, age 5
Donivan, age 16
Daven, age 15
Michael, age 7
Dena, age 6
Liam, age 7
Nicholas, age 12
Anthony, age 9
Anthony, age 11
Marquail, age 8
Devonte, age 5