Primary care barriers autistic families still encounter
Primary care barriers that autistic families encounter are communication gaps that make routine visits harder and sensory barriers that can turn the doctor’s office into an obstacle course. Limited autism training can also leave families doing the educating, and fragmented care can put more responsibility on caregivers.
The Autism Society of America reports that around 5.4 million adults in the US are autistic, and many more children are, too. It’s already hard enough to navigate everyday life as someone who’s autistic, but it becomes even harder when there are primary care barriers.
These are the healthcare challenges that autistic families face today.
Can Communication Gaps Make Routine Visits Harder?
One of the biggest barriers in autism care is communication differences, and this can start before an autistic patient even reaches the exam room. Some autistic children may have difficulty:
- Describing pain
- Answering open-ended questions
- Communicating when they’re overwhelmed
Some kids may also need alternative methods of communication, or they may heavily rely on their parents and caregivers to explain their needs. In addition, families can find themselves repeatedly explaining communication preferences at every appointment.
Sensory Barriers Can Turn the Doctor’s Office Into an Obstacle Course
Healthcare accessibility for autism is important in terms of sensory issues, as the typical primary care environment can be difficult for autistic people. These can also contribute to stress:
- Bright fluorescent lighting
- Background conversations
- Strong cleaning product smells
- Crowded waiting rooms
- Unexpected physical contact
- Prolonged periods of waiting
If primary care physicians want to help their patients with overcoming healthcare challenges, then they need to provide things like pre-visit assessments and shorter waiting periods.
Can Limited Autism Training Leave Families Doing the Educating?
Finding autism-friendly medical practices is a huge challenge; autism affects people differently, so physicians need to know more than the condition itself. For example, each person has a specific way to communicate, process information, or respond to touch, and this becomes the family’s burden to make these preferences known.
Instead of concentrating just on the child’s symptoms or preventive care, loved ones may have to explain:
- Sensory sensitivities
- Communication preferences
- Triggers
- Strategies
If the provider doesn’t receive this knowledge, then this can contribute to dissatisfaction, as well as unmet healthcare needs.
Fragmented Care Can Put More Responsibility on Caregivers
Primary care can become disconnected from specialists, therapists, and other services, so finding support for autistic families can be hard. Parents may have to repeatedly coordinate appointments and explain their child’s history to each new professional.
Transitions can be very difficult when someone moves from pediatric care into adult primary care, so finding a high-quality autism primary care provider is of the utmost importance. A coordinated approach can make these transitions easier, as it can document individual needs and establish how the person prefers to communicate.
Autistic Families Need to Find Quality Primary Care
There are many obstacles preventing autistic families from finding quality primary care, and it can make them feel hopeless. With good research, though, they can pick a primary care physician that’ll accommodate autistic needs just right.
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