By Emma Langley, Clinical Psychologist & Clinical Lead
Navigating healthcare can present unique challenges for Autistic individuals. In this blog, I delve into the importance of self-advocacy and explore practical strategies for overcoming some of the barriers to accessing healthcare. My aim is to empower you with the knowledge and tools to navigate the healthcare system with a little more confidence.
Recent research has shed light on the many barriers Autistic people encounter when seeking healthcare. From anxiety about reaching out to healthcare providers and challenges with follow-up, to sensory discomfort and difficulty identifying or describing symptoms, the barriers Autistic people experience in healthcare are varied and often overwhelming. These barriers not only hinder access to care but also contribute to disparities in health outcomes.
Healthcare professionals play a crucial role in creating a supportive and inclusive environment for Autistic clients. By adopting a neurodiversity-affirming approach and respecting individual differences, healthcare providers can enhance the quality of care they deliver. Some best practices for healthcare providers include:
Educating themselves about Autism and actively seeking training and resources to enhance their understanding.
Communicating with clients in a clear and concise manner, taking into account their preferred communication methods.
Providing opportunities for feedback and actively listening to the concerns and needs of Autistic clients.
Collaborating with clients to develop personalised care plans that address their preferences and the challenges they experience.
While healthcare providers are ultimately responsible for increasing their understanding of Autism and adopting neurodiversity-affirming practices, self-advocacy remains a crucial skill for individuals navigating the healthcare system. Advocating for yourself can be challenging, which is why I've compiled a list of accommodations that may be helpful to consider:
Request information to be repeated as needed for clarity and understanding, and ask for it in written or emailed form for future reference.
Ask for explanations of policies and procedures, along with their rationales, to alleviate anxiety and confusion.
Request a tour of the healthcare clinic to become familiar with the layout and amenities.
Enquire about extra reminders for appointments and online booking options to help manage appointments and reduce demands.
Consider creating a health profile or similar document to assist in recalling, organising, and effectively communicating all your health information and specific needs (see example HERE).
If appropriate, consider arranging for a support person to accompany you during appointments for additional assistance and advocacy.
For additional accommodations, you may find the Autism Healthcare Accommodations Tool (AHAT) helpful. This tool generates a customised accommodations report for individuals to provide to their healthcare providers. It covers aspects that can ease healthcare experiences before, during, and after visits to a primary care provider. The report tailors recommendations to each person's specific needs based on a survey. You can access the tool HERE.
Fostering collaboration between healthcare providers and Autistic individuals is essential for advancing equity in healthcare access. By promoting self-advocacy and pursuing shared goals, such as improving understanding and support, we can move towards a healthcare system that better accommodates the diverse needs of all neurotypes.
For a comprehensive list of accommodations to support self-advocacy in healthcare, keep an eye out for our upcoming free download. Stay tuned and visit our Free Downloads page HERE.
If you would like support to build self-advocacy skills or develop tailored accommodations, you can email us at admin@healthymindcentre.com.au to start the triaging process. Your pathway to better starts here.