A necessary first step toward building worldwide autism services capacity is to adapt standardized screening and diagnostic instruments for cultural relevance and sensitivity. Validated instruments ensure accurate diagnosis and facilitate early detection of Autism Spectrum Disorder. To help address this need, Autism Speaks is collaborating with Western Psychological Services (WPS), the publisher and owner of copyrights on many key diagnostic instruments. With the help of WPS, they have devised a service that already streamlined the translation process, ensuring best practices and timely approval.
Once the standardized instruments are available, GASTP will invest in human capital for autism services by providing professional development, technical assistance, content development, and education. This 'train-the-trainer' model is comprised of three phases:
Phase 1: Identification of a national planning group comprised of parents, professionals and other stakeholders to determine the national goals and needs, specify strategies, and make cultural adaptations, as required.
Phase 2: Through Autism Speaks' well-established network of trained US autism professionals, develop, train, and provide on-going technical assistance to the national training team in the desired evidence-based practices.
Phase 3: Support the transition of the national training team to independence, as well as have them become future trainers in their countries.
By the end of this three-phase process, the aspiration is to have a self-sustaining system for the training of service providers at the community level throughout each of the partner countries. Autism Speaks will then focus on maintaining trainer skills through a review and program update to be administered globally under the auspices of (but not necessarily done by) Autism Speaks.
Autism spectrum disorder (ASD) transcends geographic, economic and cultural boundaries. Reliable data indicates that a staggering 1 in 150 individuals are affected with some form of ASD worldwide-a prevalence that is higher than AIDS, diabetes, and cancer combined.
ASD is a neurodevelopmental disorder characterized by deficits in social behavior and communication, and a restricted range of activities. Autism symptoms vary by person from mild to severe. Some individuals have strong intellectual and language abilities, whereas others are cognitively impaired and require life-long care.
A major barrier to improving the health and wellbeing of children and families touched by autism is the paucity of knowledge and expertise to recognize symptoms and identify ASD. The absence of effective screening in turn limits access to care and early interventions. Without effective programs, the emergence of appropriate solutions that improve the quality of life for individuals with ASD and their families does not occur. Once populations are screened, there is a similar problem associated with the dearth of trained therapists. Treatment programs are quite effective, particularly when the diagnosis is made early and subsequent interventions are begun. This growing recognition around the need for better screening with treatment has lead groups such as the American Academy of Pediatrics to mandate autism screening for all children between 18 and 24 months of age. The success in improving care in both North America and Europe also makes it clear that these approaches can be adapted and extended to countries around the world. In a report earlier this year, researchers at the University of Pennsylvania found the average age of autism diagnosis in the US decreased from 6 to 5 between 2001 and 2004. The availability of intervention programs means that many of these children will have an opportunity for a better outcome. For example, a recent study demonstrated that children who received early intervention, on average, showed a 15 point (> 1 SD) gain in IQ. In general, when intervention is timely, up to 10% of children with autism can fully recover and nearly 90 percent show sustained post-intervention benefits.
Unfortunately, for most of the world early autism diagnosis and intervention remains out of reach. In many countries, there are simply no autism service providers. As a result, affected children and families do not receive proper care and support, and opportunities for a better outcome and improved quality of life for the families are lost.
Autism Speaks is seeking both financial and implementation partners worldwide. Through these partnerships we hope to raise funds and foster collaborations among communities, professionals, scientists, and governments who can (1) help support a self-sustaining public health infrastructure to enhance capacity for autism services and (2) help determine the best approaches to delivering solutions around the world.