From Pediatric to Adult Care: Healthcare Transitions for Autistic Adults

1. Finding Autism-Friendly Adult Healthcare Providers

• It’s true that many adult healthcare providers may have limited experience with the unique needs of autistic individuals. This includes diverse communication styles, sensory sensitivities, and the presence of co-occurring conditions. It may take some searching to find the right fit. 
• Tips on How to Find Them:
  • Ask for Referrals: Start with your child’s long-time pediatrician, developmental pediatrician, or neurologist. They often have invaluable recommendations for adult specialists who are known to be autism-friendly or have experience with neurodiverse
  • Research Specialized Practices: Try searching online for things like “adult autism specialists [your city/state]”, “autism-friendly doctors [your city/state]”, or “primary care for adults with developmental disabilities [your city/state]”. Look for clinics that mention sensory- friendly practices or specific experience with autism on their websites.

2. Building Self-Advocacy and Support Tools

• What it is: This involves teaching your child to communicate their needs, ask questions, and actively participate in their healthcare decisions to the best of their ability. For those with limited verbal communication, it means ensuring their support team can effectively and compassionately advocate on their behalf – truly being their voice.
• Why it’s important: Empowering self-advocacy fosters independence and ensures their voice, preferences, and comfort are heard and respected in their care, leading to better health outcomes and a more positive experience.
• How to Teach and Ensure Advocacy:
  • Start Early: Involve your child in medical appointments as much as possible during their teenage years. Let them practice asking questions and expressing concerns – even small steps build confidence.
  • Use Visual Aids: Prepare visual schedules, social stories, or appointment checklists to help them understand and prepare for visits, which can significantly reduce anxiety.
  • Create a “Medical Passport”: Compile a comprehensive document with key medical history, all diagnoses, current medications (including dosages and frequency), known allergies, communication preferences, specific sensory sensitivities, and effective strategies that help them cope in medical settings. Share this vital document with all providers.
  • Identify Support Persons: Clearly determine who will accompany them to appointments and effectively advocate for them if they cannot do so themselves. Ensure these individuals are well-informed and prepared.

3. Creating a Comprehensive Emergency Plan

• What to Prepare For: Think about medical emergencies, unexpected hospital stays, or situations where your child might need care from unfamiliar providers.
• Why it’s important: A clear, accessible emergency plan ensures that critical information is readily available to medical personnel. This allows your child to receive appropriate and informed care during stressful and potentially overwhelming situations, giving you peace of mind.
• What to Include in Your Plan and How to Action It:
  • Emergency Contact Information: List all key contacts: family, support persons, and primary care providers.
  • Concise Medical Information: Include all diagnoses, current medications (with dosages and frequency), allergies, past surgeries, and current doctors.
  • Communication Strategies: Detail how your child communicates best, what might trigger distress, and effective calming techniques.
  • Sensory Sensitivities: Note specific sensitivities (e.g., to light, sound, touch, smells) and preferred accommodations.
  • Behavioral Support Strategies: Outline what helps when they are agitated, overwhelmed, or experiencing a meltdown.
  • Legal Documents: Include copies of guardianship papers, advanced directives, or HIPAA releases (if applicable).
  • Action: Keep this information in an easily accessible “Go Bag” or a clearly marked binder. Consider using a ‘Vial of Life‘ (a small, recognizable container often kept in the refrigerator, holding your vital health information for emergencies) or a similar system for quick access to critical medical data for first responders. Discuss your plan with your child and their support team, ensuring everyone knows where documents are stored and how to use them effectively.