Study offers a new model for primary care clinics serving adults with autism
A recent study published in July in the Journal of Autism and Developmental Disorders reveals a new primary care clinic model that can help improve healthcare services among adults with autism spectrum disorder.
The Center for Autism Services and Transition (CAST) is a primary care clinic opened in April 2014 to provide high quality care for adults with autism and ease the transition from pediatric to adult care. The CAST program is integrated into a larger primary care office so that CAST patients and their families can access autism-specific care and general healthcare in the same familiar setting. As of October 2020, CAST served a total of 858 patients in the Columbus, Ohio area. The average age of CAST patients is 24 years old and 78% are male.
The CAST clinic is designed with autistic people in mind, filling a need for healthcare services that accommodate varying communication skills, sensory sensitivities, information processing difficulties and healthcare management skills. Current primary care models are not sufficient for the autistic population, indicated by the fact that:
- Autistic adults are less likely to receive recommended preventative care services.
- They are more likely to report unmet medical needs or dissatisfaction with their care than the general population.
- They are more likely to visit the emergency room than the general population, even if they have regular visits with a primary care doctor.
- They face communication barriers due to patient privacy laws that prevent doctors from engaging parents in conversations about medical care.
CAST tackles these issues as well as provider- and system-level barriers to quality care, such as lack of knowledge about autism, inadequate support and inaccessible facilities. In particular, its multi-disciplinary team of specialists can help autistic people and their families navigate their specific challenges while accessing primary care in a generalized setting.
To ensure that autistic adults are as comfortable as possible with their care, CAST has adopted practices like:
- A pre-visit assessment. A CAST staff member speaks with the patient or their family before the appointment to understand their goals, needs and any necessary accommodations. Accommodations may include shorter wait times, allowing the patient to wait in the car, or delaying sensory procedures like taking blood pressure.
- Longer visits. New patient visits last 60 minutes versus the standard 40 minutes to allow the doctor to get to know the patient better and give the patient time to get used to their new environment.
- Additional support. The clinic is staffed with a multi-disciplinary team of providers in addition to four physicians trained and certified in both internal medicine and pediatrics. At its largest, the staff included a full-time registered nurse, a full-time social worker, a program director who helped with grants and program development, and a psychiatrist who worked one day a week. Donor support and grant funding have allowed CAST to offer supports beyond those typically included in primary care facilities.
- While CAST has experienced some staffing changes over the years that have made psychiatric care and social work support inconsistent, both services have been helpful to the clinic’s patients. Psychiatric visits have given patients access to care focused on the management of anti-psychotics and other psychotropic medications. Social work support has allowed CAST patients and their families to address a number of needs, particularly those related to navigating applications for state support and the transition to private insurance after the end of school services at age 22.
- Procedure videos. The CAST clinic produced four videos for patients and healthcare providers demonstrating common procedures done in the office, including taking blood pressure, having an EKG done, getting blood drawn and receiving a vaccination. Patients and families can watch these videos ahead of time to prepare for the office visit. Healthcare providers can watch them to learn the best ways to approach patients with autism who are nervous about a procedure.
- As of September 2020, the patient-focused videos were viewed 7,756 times, with the blood draw video being viewed the most (7223 views). The healthcare provider-focused videos have been viewed 18,488 times, with the blood draw video being viewed the most (16,718 views).
- “Happy visits.” On a case-by-case basis, CAST offers “happy visits,” or brief visits with a registered nurse or medical assistant where patients and their families can examine equipment and ask questions to better prepare for an office visit. “Happy visits” have been used to help patients feel more comfortable with blood draws, vaccines and first appointments. Unfortunately, these visits are not billable, limiting how broadly they can be used.
- Evening educational sessions. About once a year, CAST hosts evening educational sessions to help patients and families navigate common challenges like guardianship and financial planning. Providing this information is valuable to patients and sessions are well attended when offered.
- Telemedicine visits. CAST first began offering telemedicine visits in 2018 for follow-up sessions with patients. The use of telemedicine was expanded in March 2020 with the COVID-19 pandemic and will continue to be an essential part of how CAST patients get at least some of their care.
Some of these strategies may not be possible for every primary care office, but simple accommodations like allowing patients to wait in the car for their visit or delaying blood pressure measurement can greatly improve the quality of care for people with autism.
In addition, while offering longer visits might be an issue for clinics that do not receive grant or donor funding, providers should consider scheduling autistic people as the first or last patient of the day to ensure more flexibility in the timing of their appointment without requiring major system changes.