Nothing about us without us
Who: Strömberg and colleagues
Journal: Autism in Adulthood
Title: Experiences of Sensory Overload and Communication Barriers by Autistic Adults in Health Care Settings
Barriers to Health Care
Autistic adults have a high rate of mental health conditions & increased mortality from suicide compared to nonautistic adults, as well as an increased level of physical health conditions.
However, they also have more unmet healthcare needs than nonautistic adults.
This paper wanted to look at barriers to healthcare.
A questionnaire was filled in by 98 individuals, 62 of whom were diagnosed as autistic. The majority were born in Sweden, cisgender female, and had completed at least a high school level education. The most common co-occurring conditions were anxiety disorders, ADHD, depressive disorders, and exhaustion disorder.
Nonautistic participants barely mentioned auditory difficulties, but autistic participants did. They found sound levels to be stressful & exhausting. Specifically, they struggled with TVs, alarms, phones, and ticking clocks.
They suggested the need for sound insulation between rooms & sound absorbing materials within rooms, the use of headphones for TVs, and using quieter phones & ventilation.
Both autistic & nonautistic participants disliked the sharp quality of the lighting. Autistic participants also disliked the bright & flickering lights, specifically fluorescent lamps & decorative Christmas lights.
They suggested having softer global lighting, small lamps, and fewer reflective surfaces.
“In the psychiatric clinic, they know that I don’t like fluorescent lights and have sometimes turned off the ceiling light when I come in. I appreciate that, it makes it easier for me to focus on the conversation.”
(Autistic gender divergent, 35)
Both groups also disliked clutter, unpleasant colours, irrelevant stimuli such as artwork, inappropriate temperate and air flow, and autistic people also mentioned unpleasant smells and unpleasant textures of hospital blankets.
Autistic people reported that smells, movement, & input from others nearby generated a sense of unpredictability & stress. They preferred to wait in separate room.
Autistic participants stated that they needed individualised information ahead of time to help them prepare for health care situations, such as details of the procedure, photos of facilities and staff, & the duration of the visit.
“It would be nice to get exceedingly clear instructions. ‘Have a seat’ vs ‘sit down there and wait’ are very different. Especially if there are different places to sit. Also, knowing if one should pay immediately or not until afterwards or what’s about to happen.”
(Autistic female, 55)
They also struggled with the nonverbal aspects of communication, and they felt that doctors misunderstood them when their body language & tone of voice did not match what they were saying. They felt doctors put too much weight on nonverbal communication.
“Listen to what I say, even if my facial expressions don’t always match my words.”
(Autistic gender divergent, 21)
There was also a theme of misunderstanding between patients & providers, and this could lead to errors in medical records. They appreciated it when providers actively confirmed that they had understood the information, as many were afraid to ask additional questions. Many appreciated having a written summary of the visit, and also would benefit from visual aids, such as being able to draw on a whiteboard or use pictures to communication, or having permission to audio record visits.
“When I have been admitted to a ward, I would have liked to have their schedule written down. What time is breakfast/lunch/food? When do they make rounds?”(Autistic female, 41)
Some wanted more individualised communication adaptations; one wanted to be able to communicate about themselves using computer analogies, and another wanted to be able to receive psychiatric care in a written format online in order to avoid stressful environments.
They struggled a lot with the need to “start over” with every new provider.
They felt providers were unable to accommodate for slow processing, and patients felt unable to cope with a high pace of communication, examination, or decision making.
“Filling out forms (e.g., in the waiting room) to get as much information as possible. It gives better responses because you get to think it through. Questions that I never thought about before have usually [resulted in] the wrong answer, because I’m too stressed to give an answer fast.”
(Autistic female, 53)
They also found providers tended to focus on a pre-existing psychiatric condition or their autism, sometimes labelling physical complaints as psychosomatic without investigation. This caused fear & anger.
“That they don’t question physical symptoms just because you have a psychiatric diagnosis. That you don’t have to defend things that are part of the [autism] diagnosis.”
(Autistic female, 40)
40% of autistic adults had had their autism questioned by a professional, despite their diagnosis. Providers also lacked knowledge about autism, and this negatively impacted their health care. Providers also couldn’t combine their professional knowledge of autism with the social impression of a verbal, well-educated patient. This resulted in the patients feeling unseen, disrespected, or questioned.
Providers didn’t arrange for spontaneous adaptations. Common challenges for autistic patients were unplanned delays, open-ended questions, hypersensitivity to medications, & atypical perceptions or presentations of pain.
Autistic participants indicated that they would be happy if providers had even a basic knowledge of autism & its heterogeneity.
There were a number of barriers to healthcare identified by autistic adults, many of which could be overcome with appropriate provider training & adaptations within healthcare settings.