Every year, The Arc of Massachusetts’ Operation House Call (OHC) program trains nearly 1,000 future medical professionals in the best practices needed to provide the highest quality of care possible to individuals with intellectual and developmental disabilities and autism. In this series, we’ll be looking at some of the best practices tips that families have come up with over the years when it comes to ways in which medical professionals can improve the patient experiences of individuals with disabilities. Part of the OHC curriculum includes providing concrete examples of best practices.
Important note: Always remember that all patients are unique individuals. What follows are merely common suggestions that we have learned through years of working with our volunteer families and co-teachers. Every individual is different.
Tips on Communicating with Patients with Autism and I/DD in an Office Visit
- Ask the patient directly what helps them the best. Talk directly to them whenever possible, using parent/caregiver if needed.
- Work with the patient and their family to understand their individual communication strengths. Work with parents, siblings, guardians, and caretakers to find the best means of communicating if the patient is unable to communicate or communicate fully.
- Social difficulties in patients with autism can include a lack of eye contact. That does not mean the patient isn’t paying attention to what you are saying. Don’t give up on communicating with them directly.
- Just because a patient is not responding to you does not mean they do not understand what you are saying.
- Give the patient time to process and respond. It might take some individuals with I/DD and autism longer to process and reply.
- People with autism often have a literal way of interpreting things. Use clear, concrete language and examples.
- Incorporate the use of visuals and gestures. Many individuals with I/DD are visual first learners.
- Tell a patient what is going to happen before you do it, so they know what is coming next and won’t be prone to anxiety or fear. Use their mom or dad, a toy, or even yourself to demonstrate what you are about to do.
- Try giving the patient choices. It increases independence and makes them feel more in control. (We can look at your ears first or your throat first. What do you want to do?)
- Offer options in the form of a sequence: First, we are going to take your blood pressure. Then, you can explore the bin of toys.
Tips on Understanding Behaviors of Patients with Autism and I/DD in an Office Visit
- Repetitive behaviors can be used as coping methods. Please respect them.
- Environment is key. Some patients may be light sensitive, sound sensitive, smell sensitive, or any number of other sensory sensitivities. Be aware of changes that may need to be made.
- Anxiety is common among patients with autism and I/DD, and can often cause increases in challenging behaviors.
- Maintain routine wherever possible. Familiarity helps.
- Allow options for distraction and self-soothing for patients who may need them. Soothing or sensory friendly toys are always a great start, and for technology lovers, easy access to WiFi is a real plus.
- Learn about the interests of the patient – and connect with them about them. Even if you don’t share their same love of dinosaurs or astronauts or thoroughbred horses, make the effort to find ways to connect.
Tips on Arranging Appointments for Patients with Autism and I/DD
- Be flexible with standard office rules when possible. These individuals often need flexibility.
- Prioritize making appointments for patients with autism or other I/DD when the waiting time might be the shortest – such as first thing in the morning, or right after returning from your lunch break. Individuals with I/DD and autism often have a hard time waiting, and may be prone to anxiety or challenging behaviors.
- Allow families to call ahead and inquire as to whether a doctor is running behind schedule, so they will be able to adequately plan and prepare for the wait time.
Tips on Approaching Patients with Autism and I/DD and Working with Families
- Partner with parents. They might not be medical professionals, but they are the expert in their son or daughter’s daily life and experience.
- Think about how your unintentional implicit bias may affect the treatment and assessment of your patient. Think of them in person first terms. Don’t see them as just their disability.
- Be cognizant of and beware of diagnostic overshadowing. Remember to always look beyond behaviors of the individual to rule out medical concerns. Don’t assume a new or challenging behavior is just “part of the syndrome” or “part of the autism.”
Stay tuned for future updates in this series of #ohctips.
Learn more about the Operation House Call program.