Both children and adults with ASD face serious challenges accessing competent and adequate healthcare. A 2012 meta review of studies to date found that children with ASD have both higher health care utilization and costs, and worse access to care and medical homes. Many pediatricians and primary care providers lack knowledge of how to screen for autism and when to make a referral to a specialist, which often especially results in girls and children with high functioning autism remaining undiagnosed and without access to the resources that they need to thrive. Furthermore, there is a serious shortage of therapists who specialize in treating autism, and an even greater shortage of doctors who specialize in the diagnosis and treatment of autism.
The situation is even more dire for adults with ASD. A 2013 study found that less than 25% of all youth with ASD received healthcare transition services, which help provide a smooth transition from pediatric care to adult medical providers. This results in a decline in scheduled outpatient and inpatient services and an increase in the use of emergency medical services. A recent survey of 507 autistic adults found that 80% had difficulties with accessing care from a general practitioner, compared to just 37% of all non-autistic survey respondents. Reported reasons for difficulty included difficulty making appointments by telephone, feeling misunderstood and stigmatized by medical providers, and sensory issues with the waiting room environment. As a result, many respondents were unable to get care for serious, even life-threatening medical conditions. Mental health services for adults on the spectrum are also lacking. A 2021 survey of 498 adult-patient psychotherapists showed a high prevalence of misconceptions and outdated beliefs about autism, as well as a much lower competency in treating adults with ASD compared to adults with other developmental and psychiatric conditions.
The consequences of these barriers are tragic. A 2016 comprehensive Swedish study found that the average life expectancy for someone with autism and intellectual disability is just 39.5 years, while the average life expectancy for autism without intellectual disability (high functioning autism) is 58 years. The biggest contributor to increased mortality in those with autism and ID is neurological conditions, including epilepsy, while the biggest contributor to increased mortality in those with high functioning autism is suicide.
Given the gravity of these outcomes, improving access to medical care for those on the spectrum is a human rights issue. Suggested public policy solutions include student debt forgiveness for doctors who specialize in the diagnosis and treatment of autism, requiring autism-specific rotations for psychiatric, neurological, and pediatric residents, and the increased use of telemedicine to reach those who live in rural areas. Other solutions include legally requiring higher reimbursement rates for ABA therapists, and training in autism competency in licensed general practitioners and psychotherapists. These reforms can’t wait-too many lives have been lost already.
by Rebecca Stapleford