Supporting Neurodivergent Patients in Healthcare Settings

  • Tourette Syndrome
  • Autism Spectrum Disorder
  • Attention-Deficit Hyperactivity Disorder (ADHD)
  • Down Syndrome
  • Dyslexia
  • Dyspraxia and many more…
TERMDEFINITION
Pulse Oximeter (O2)Measures oxygen in blood and heart rate
Thermometer (F/C)Measures body temperature
Blood Pressure (BP)Force of blood against artery walls; indicates how hard the heart is working
HIPAAUS federal law protecting sensitive patient health information from disclosure without consent
Advance Directives (AD)A written statement expressing how you want medical decisions made if you can’t make them yourself
Link to medical terminology

Communication barriers: Patients fear not being heard or missing important medical information, increasing stress and reducing trust.

Medical anxiety: Nervousness due to fear of diagnosis, past negative experiences, or lack of control.

Sensory overload: Bright lights, loud noises, crowded spaces, and constant activity.

Long waits: Feeling forgotten, anxious about results, or physically uncomfortable.

Prepare for an Appointment

  • Make a list of symptoms & concerns
  • List medications/allergies
  • Bring Documentation (insurance & ID)
  • Pack sensory tools (headphones, fidgets)
  • Plan transportation & timing
  • Bring a friend

Reduce Stress Before a Visit

  • Review what will happen step-by-step
  • Use social stories or visuals
  • Bring comfort items
  • Practice deep breathing/grounding
  • Prepare questions in advance

Patient Rights You Should Know

  • Right to Respect, Dignity, and Non-Discrimination
  • Right to Informed Consent (accept or deny care)
  • Right to Clear Communication (Interpreter if needed)
  • Privacy and Confidentiality
  • Right to Accessibility (Accessible environment)
  • Feedback, Concerns, and Grievances

Request Accommodations

  • Quiet waiting area
  • Longer appointment time
  • Written instructions
  • Breaks during exams
  • Permission for comfort items

Improve Communication with Providers

  • Ask providers to slow down
  • Request written summaries
  • Use devices if needed
  • Bring an advocate/interpreter
  • Ask for clarification anytime
What questions should you ask doctors?
  • What is my diagnosis?
  • What tests are needed?
  • Treatment options?
  • Medication side effects?
  • How long will recovery take?
  • When is follow‑up?
How can you self‑advocate during hospital visits?
  • Speak up about discomfort
  • Request sensory adjustments
  • Ask for breaks
  • Say when instructions are not clear
  • Use written communication
What should happen after the visit?
  • Review care instructions
  • Fill prescriptions
  • Schedule follow‑ups
  • Monitor symptoms
  • Contact provider with questions
Collaborations in the Advancement of Research on Disability
Email: card-AHS@illinois.edu