Table 1.
Examples of How Findings from Prior Studies Informed Toolkit
| Finding | How it informed toolkit |
|---|---|
| Great heterogeneity in what autistic patients need and recommend | Development of AHAT to create personalized accommodations reports |
| PCPs disclose low confidence in ASD-related skills, but do not have time to attend training | Online format for PCP educational materials; AHAT reports provide actionable, patient-specific information |
| Making appointments may be difficult or impossible for some autistic patients | AHAT letter can include request to help patient make appointment; “How to Make Appointments” section on patient portion of website; “Making an Appointment Worksheet” for patients |
| Waiting room can be hard to tolerate for autistic patients; some patients/systems have found ways to address issues (e.g. headphones, private areas, call to patient when ready) | AHAT includes section about waiting room accommodations; information about waiting room challenges and accommodations on both patient and provider sections of website; “What to Bring to a Healthcare Visit Checklist” includes items to help make waiting room more tolerable |
| Providers often make false assumptions about patients’ communication needs and abilities or ignore written communication | AHAT section describing patients’ ability to speak, read, and write, use of AAC, and other communication-related information; AHAT response options re need for written communication; educational materials re communication issues on provider section of website |
| Challenges with communication can greatly impede care; communication accommodations are often a key component of successful encounters | AHAT section about accommodations to help with expressive and receptive communication; educational information about communication issues in ASD on provider section of website |
| Sensory issues (e.g. sensitivity to lights, sounds, touch, or smells) can be barrier to care | AHAT section response options for accommodations to address sensory issues; “What to Bring to a Healthcare Visit Checklist” includes items to help with sensory needs; patient and PCP educational materials about sensory issues on website |
| Slow processing speed can be barrier to real-time interactions with healthcare provider | AHAT response options related to needing extra time to process information; information about processing speed issues on provider section of website; “Symptoms Worksheet” to help patients collect thoughts prior to a visit |
| Patients’ challenges with body awareness can impede care | AHAT response options informing provider about challenges with body awareness; educational materials re body awareness on provider section of website |
| Patients experience great challenges navigating the health system and following up on recommendations | AHAT sections on accommodations to help patients follow-up on care; patient information section about navigating the healthcare system; “After the Visit Worksheet” for patients to collect information needed to follow-up on care |
| Providers often do not appropriately incorporate supporters; doing so is a key component to many successful interactions | AHAT section listing supporters and noting desired role for each |
| Patients experience discrimination and stigma related to ASD; may not wish to disclose ASD to providers | Patient section of website includes pros and cons of disclosing diagnosis, tips for how to talk to people about it and for coping with discrimination, and information about laws protecting people with disabilities; provider section of website includes information about what ASD is and is not, and dispels common myths; entire toolkit uses strengths-based approach and non-discriminatory language |
AHAT Autism Healthcare Accommodations Tool, PCP primary care provider, ASD autism spectrum disorder