After we completed the Angelman Project, Deborah Hirtz, MD, at the National Institutes of Health (NIH) – National Institute of Neurological Diseases and Stroke (NINDS) reviewed The Angelman Project and suggested that we create a similar project on the early detection of autism.
Autism prevalence numbers continue to rise. One in 68 children in the US has an autism spectrum disorder (CDC, 2014). Though ASD can be reliably detected in children less than 3 years, the average age of diagnosis is 4 to 5 years old and later for children from minority groups (Radecki, et al., 2011). The American Academy of Pediatrics (AAP) has mandated autism-specific screening for ALL children using a validated screening tool at both the 18- and 24- month well-child exams (AAP, 2007), yet adoption of this mandate has been slow. Pediatricians were not familiar with the early warning signs of autism so early detection often did not happen at 18 – 24 months as recommended by the American Academy of Pediatrics but later – not until 4-5 years of age or even later - delaying the start of therapies which are most effective when applied at 1.5- 2 years of age while the brain is still developing. We were funded for WCLA through NINDS. Dr. Hirtz became our Project Officer and we began the development of a video database on toddlers developing autism as well as a matching database of typical toddlers – which was critical for understanding the warning signs of ASD – in which early warning signs are often missing milestones or subtle deficits in age appropriate behaviors – e.g., eye contact, pointing, and joint attention. Showing children with ASD along with typically developing children illuminates these symptoms. Video highlights the subtle signs and missing milestones of autism risk in toddlers, of benefit to parents and clinicians alike.
Many pediatricians continue to report a lack of familiarity with ASD screening tools as well as a lack of time to conduct screening. Accordingly, only 8 to 28% of surveyed pediatricians report any use of an ASD screener, let alone routine or universal use (Gillis, 2009). Screening involves using standardized, validated tools to evaluate risk for the disorder in question. Most parents and many doctors lack familiarity with the diverse and subtle manifestations of this perplexing disorder. As such, screeners may be confusing to some parents and autism-specific surveillance a challenge to even the most dedicated primary care physician. Further, many parents and some doctors do not realize the importance of starting treatment as early as possible.
Early intervention leads to more favorable long-term functional outcomes, including successful educational inclusion (Eldevik et al, 2009; Dawson et al, 2010, Dawson, 2011; Landa and Kalb, 2012). It also helps mitigate long-term financial costs. Lifetime costs from lost productivity of adults with ASD and parents place huge financial burdens on families and society (per capita costs, $3.2 M; Ganz, 2007).
Barriers to screening and surveillance of ASD at the earliest possible age arise because of inadequate training and experience in identifying more nuanced autistic features in young children, and the use of antiquated, inefficient diagnostic instruments and procedures. Consequently, the screening and surveillance process is haphazard and unreliable, and goes against AAP protocols for standardized screening and surveillance.
Well Child Lens Autism was designed to counter each of those barriers and is comprised of several different components that together are a complete solution to both autism screening and surveillance. Presently, all of the components of WCLA are on our interactive website www.wellchildlens.com which was completed this year and went live on the internet October, 2014:
The next phase in development for WCLA will be a clinical version designed specifically for the needs of pediatric offices, whether in a private practice, hospital or clinic setting. Well Child Lens Autism-Clinical Version will take all the components from the website and incorporate them into electronic medical record (EMR) systems for busy pediatric practices. While the online version is a free educational resource for parents and physicians that will help raise the level of awareness of autism, only an EMR integrated clinical version will provide the benefits to physicians that they expect and need from healthcare IT. The educational purposes of the website will remain but all research about how doctors are using healthcare IT underlines one central point - unless the software is tied or integrated into their digital EMR office system, doctors and other office staff will not have the time or inclination to use it. This is the primary reason that medical offices are moving towards integrating all their practice functions into their EMR system: patient records, communication with patients and other providers, billing, prescriptions, clinical information, diagnostic tools, referrals, etc. Busy medical practices do not have the time to search, download and access information that is not connected to all the functionalities they expect and need from EMR.
As a web-based specialty EMR software, WCLA-CV will be an integrated diagnostic, communications, and care management solution that includes the clinically validated iM-CHAT and all the WCLA modules targeted to meet the needs of the specific population in that practice (i.e. offering different language versions) all automated to fit into a busy practice. It offers advantages by improving both the quality of medical decision-making and the efficiency of the healthcare delivery process starting from the time a child is scheduled for a well visit to their entry point in the medical practice workflow, to the decisions to refer, diagnose, and monitor the child, features that doctors now expect from their EMR.