Each year slightly less than four million babies are born in the U.S. 1 in 54, or almost 75,000, will develop autism. At any given time, there are approximately 370,000 of these children in the critical “early intervention” window of birth to age five when treatment is more likely to have long term positive effects.
During this age period, a young child’s brain is still forming and is more “plastic,” or changeable, than at older ages. Early intervention offers children not only the best start possible, but also the best chance of developing to their full potential. With early intervention, some children with autism make so much progress that they are no longer on the autism spectrum when they are older. Without early intervention, however, very few individuals recover from autism, resulting in devasting consequences for families, schools, healthcare networks, and society.
Mothers of a child with autism earn an average of 56% less than mothers of children with no health limitation. Nearly 60% of parents of a child with autism took a leave of absence from work within the past year. Siblings cope with feelings of embarrassment and difficulty interacting with their brother or sister.
Tragically, less than 50% of children with autism have access to diagnostic and therapy services. Board Certified Behavior Analysts (BCBA) are the professionals who primarily treat autism. There are just under 30,000 BCBAs in the United States. It is estimated that the number of BCBAs would need to be doubled to meet the current service needs of families affected by autism.
Over four million U.S. children live in rural areas, based on U.S. Census data. Human Resources Services Administration data indicate that 88% of rural U.S. counties are medically underserved.
According to the National Institutes of Health (NIH), rural settings present even greater disparities and challenges for families of children with autism. Children with autism who live in rural versus urban areas are more likely to experience significant difficulties and delays in accessing services. Rural primary healthcare systems must rely on other entities to assist with autism identification and services, reports the NIH.
A combination of factors in rural areas contribute to children with autism being misdiagnosed and experiencing a lack of treatment access, according to the NIH. The geographic distance from resources creates significant burdens for families in rural areas. Low parental education level may additionally contribute to reduced ASD knowledge and identification, as parents with higher education tend to get diagnosed earlier.
U.S. government Economic Research Service data indicate that racial and ethnic minorities now make up 20 % of rural residents. These communities are at even greater risk for experiencing unmet health care needs. The American Academy of Child and Adolescent Psychiatry (AACAP) reports that screeners for autism may have poor reliability in some rural groups, especially for individuals with minority status or low education.
But this need not be the case. Access to telemedicine can change the game for families and individuals in rural and underserved areas. Telehealth and telemedicine, according to the NIH, is a cost- and time-effective way for hard-to-reach families to access autism diagnosis and intervention. Research from the American Academy of Pediatrics (AAP) demonstrated that parents can use behavioral intervention to successfully treat symptoms associated with autism when directed via telehealth.