Tips for Autistic People to Successfully Access Healthcare
Coproduced Article
Kamila Rojecka, Behaviour Technician, and Sharon Lock, Learning Disability and Autism Nurse/Clinical Reviewer, teamed up to develop tips for hospital visits for autistic people.
Autistic people with co-occurring physical and mental health conditions experience greater access barriers to health services of all types. Hospitals can be highly anxiety-provoking environments for people who are diagnosed with autism. Healthcare environments are packed with a range of sensory information: busy and noisy waiting rooms, with bright and smelly places, can make the process of accessing healthcare very challenging. Many clinicians receive very little training on working effectively with autistic people. This contributes to barriers around communication, including miscommunication, and misinterpretation (e.g., some autistic people may find it difficult to describe pain and symptoms in a conventional way or are able to smile despite being in pain). Moreover, sensory processing and sensitivities contribute to autistic people feeling extremely uncomfortable, overhelped, or distressed in a hospital environment.
Being prepared can help an autistic person reduce some of the stress related to a hospital visit and support healthcare professionals to make reasonable adjustments, so they can best support any additional needs.
Here are our top tips to help prepare for a healthcare visit:
Plan ahead wherever possible. Know where you’re going and what will happen.
Find out when the ward is busy in advance of your visit and where you can access a quiet area if needed.
If you need additional equipment (e.g., noise-cancelling headphones, favourite sensory objects, or a special toy) ensure you have these with you.
If you have support from family, friends and paid staff, talk through your hospital admission with them. Be clear about how you would like them to support you during your hospital stay.
Make sure hospital staff have information about your needs and the reasonable adjustments you need.
You may not have a learning disability but try contacting the hospital learning disability liaison nurse to talk through your needs. They have knowledge about autism and can talk to other people in the hospital for you.
Be clear about how your autism affects you and explain them to your ward staff (e.g., meals, routines, communication preferences, sensory needs, what is helpful/unhelpful, etc.).
Know your rights – if you are sectioned under the Mental Health Act you have the right to an independent Mental Health Advocate (IMHA). This person can voice your opinions in meetings where you may become overwhelmed.
If you know that you or your loved one may struggle with advocating for their needs whilst at the healthcare visit, write down some of these tips and strategies to bring along with you to share.