By: Beth Vaughan
2015 marks ten years of progress since Autism Speaks first opened its doors in 2005, with a goal of significantly enhancing autism services in every community. Autism Speaks has helped advance our understanding and treatment of autism in ways almost unimaginable ten years ago. Thanks to Autism Speaks, and the support of this awesome community, here is what we now know:
- Autism’s prevalence has skyrocketed.
Ten years ago, autism’s estimated prevalence was 1 in 166. Today it’s 1 in 68 – an increase of more than 100% in just one decade.
- Direct screening suggests that autism’s prevalence may be even higher.
In a landmark study funded by Autism Speaks, screeners went into schools in South Korea and found 1 in 38 children affected by autism, most of them previously undiagnosed. Autism Speaks is now working with the CDC to conduct a similar direct-screening study in the United States.
- Autism can be reliably diagnosed by age two.
Because earlier intervention improves outcomes, Autism Speaks is redoubling our efforts to increase early screening, especially in underserved communities.
- High-quality early intervention does more than develop skills.
Early intervention can change underlying brain development and activity. It’s also cost effective as it reduces the need for educational and behavioral support in grade school and beyond.
- Behavioral therapy for autism can transform lives.
Though children with autism vary in how far they progress with behavioral therapy, we now have solid evidence of its benefits. This has enabled Autism Speaks to successfully advocate for health coverage of behavioral health treatment, now the law in 38 states and counting. Now many families are getting desperately needed therapy that was once denied.
- One third of children and adults with autism are nonverbal.
Autism Speaks continues to support research on the best uses of assistive communication devices and has donated thousands of the devices to individuals and families who could not otherwise afford them.
- Assistive communication devices encourage speech in some nonverbal children.
An Autism Speaks-funded study dispelled the belief that nonverbal children with autism who don’t speak by age 5 will remain nonverbal for life.
- Autism-related GI disorders are real.
Research by the Autism Speaks ATN revealed that half of children with autism have GI disorders and the pain can worsen behavioral symptoms. The Autism Speaks Autism Treatment Network has developed effective treatment guidelines for pediatricians and tool kits for parents.
- Autism-related sleep disturbance is common and treatable.
Thanks to research funded by Autism Speaks, we now have evidence-based medical guidelines and tool kits to help parents improve the sleep of those with autism.
- As many as one third of individuals with autism have epilepsy.
The potentially dangerous seizures are not always obvious without specialized testing.
- Autism can affect the whole body.
Seizures, disturbed sleep and painful GI disorders are just some of the medical conditions commonly associated with autism. The Autism Speaks Autism Treatment Network is dedicated to advancing a “whole person” approach to autism healthcare.
- Whole genome sequencing can guide personalized treatment.
Autism Speaks’ MSSNG program is changing the future of autism through the genome sequencing of thousands of affected families. Already, this work, which is being stored on the Google Cloud Platform, is producing medically valuable information and identifying targets for the development of new autism medicines.
- Environmental factors can play a significant role.
Experts once believed that autism was almost entirely hereditary. Then research with families participating in the Autism Speaks Autism Genetic Resource Exchange showed that non-inherited influences on early brain development account for nearly half of a child’s risk for developing autism.
- We’ve begun to identify autism’s environmental risk factors.
These factors include maternal infection and high exposure to air pollution during pregnancy. And we now know that prenatal vitamins with folic acid can reduce the risk of autism if taken before conception and through pregnancy.
- Nearly half of those with autism wander or bolt.
Autism Speaks has taken the lead in promoting wandering prevention and recovery through the funding of programs that increase awareness, train first responders and teach water safety.
- Nearly two-thirds of children with autism have been bullied.
Autism Speaks has partnered with the National Center for Learning Disabilities and others to raise awareness and combat bullying of special-needs individuals.
- Most adults with autism (84%) remain living with their parents.
Autism Speaks is advocating for federal and state policies that will increase community living options for adults with autism.
- Nearly half of 25-year-olds with autism have never held a paying job.
Autism Speaks is working to increase vocational and post-secondary educational support for young adults with autism, and is working with employers to expand job opportunities.
- Each year, an estimated 50,000 teens with autism age out of school-based autism services.
Autism Speaks continues to work with public and private partners to provide the support that individuals with autism need to successfully transition into adulthood and become valued and valuable members of their communities.
- The cost of autism across a lifetime averages $1.4 million to $2.4 million.
These costs, which increase with intellectual disability, place a tremendous burden on families and society, but can be dramatically reduced with high-quality interventions and adult transition support.