I have been a paramedic for 22 years. As a mother of a 16-year-old son with autism and care provider to a 30-year-old with autism, I have a unique understanding of the challenges for EMS when encountering this unique patient population. According to the National Institute of Neurological Disorders, Autism Spectrum Disorder (ASD) refers to a group of complex neurodevelopment disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction.
The term “spectrum” refers to the wide range of symptoms, skills and levels of disability in functioning that can occur in people with ASD. Some children and adults with ASD are fully able to perform all activities of daily living while others require substantial support to perform basic activities. It knows no racial, ethnic nor social boundaries, and family income, lifestyle, and educational levels do not affect the chance of autism's occurrence.
Though ASD is often associated with children, these children become adults. Most first responders will encounter someone with autism during their career, and hopefully they recognize it. Unfortunately, you cannot go about business as usual with these patients.
These special patients need you to CARE.
C – Communicate: Utilizing the caregiver, if present, is the key to success. They will be your best source of information. More important, they know how to communicate with the patient and will be critical if hands-on assessment and treatments are required. When communicating with a patient with autism, speak slowly, use simple words, only make one request at a time, and try to keep questions or instructions to 5 words or less. If your patient is nonverbal, use picture cards or an autism app. Autism Speaks is a great resource to find communication aids. Explain what you are doing BEFORE you do it. Albert Einstein, believed to have been autistic, stated, “If you can’t explain it simply, you don’t understand it well enough.” If transporting, show pictures of a hospital, nurses and doctors. It may avert unnecessary anxiety or aggression from the patient if they know what to expect.
A – Advocate: Remember these individuals are doing the best they can. Simply touching them when they are already stressed could be detrimental. You need to be their advocate; look for alternatives. If the caregiver tells you a medication in your protocol doesn’t do well for the patient, call Medical Direction and ask to deviate from the standard. TRUST THE CAREGIVER. These patients may not measure pain sensation at all or experience a great deal of pain, and you will not be able to figure out why. Focus on possible injuries based on mechanism and not on the patient’s reaction or level of pain. They may show an unusual pain response that could include laughter, humming, singing or removing of clothes. Be their advocate at the hospital as well so they do not get dismissed. Be patient and be creative in your care; they need you to meet them where they are because they are already doing their best to cope. Remember that even those on the more severe end of the spectrum are still people with feelings and need you to do your best to try to help them despite their not being able to tell you what is wrong. You may want to check out Carly Fleischmann’s story (“Non-Verbal Girl With Autism Speaks Through Her Computer” that appeared on the ABC news show “20/20” tinyurl.com/Carlyon2020).
R – Restrict: Restrict or minimize sensory input: Many of their senses are more heightened and extremes such as loud noises, bright lights or strong smells are very hard on them. If you know you are running on someone with autism, turn off the siren and emergency lights as you near the location if safe to do so. Ensure you are not assessing them near the exhaust. Unless diagnostically necessary, do not shine a light in their eyes. Though an ECG may not seem invasive, adhesives including Band-aids can trigger a reaction because of the sensation to them.
E – Eye: Keep your eyes on your patient. If you are at an emergency scene such as a car accident, fire, or other incident where the autistic patient is not the primary or only concern, keep your eyes on them to ensure their safety. They will return to the emergency if they believe their parent or guardian is still there but if the scene is overloading their senses they will try to leave.
Autism is always unique, totally interesting and sometimes mysterious. Special thanks to Pam Owens; paramedic, mother of two with autism, and friend, who guided me through the mysteries of autism when my son was diagnosed. These tips only scratch the surface. For more information, check out Autism Speaks, Autism Society of America or your local autism organizations.
BIO
TAMI KAYEA has been a firefighter and paramedic with Dallas Fire-Rescue Department for 22 years. She has risen through the ranks and is currently deputy chief of EMS. She has her master’s degree in management and leadership and is a graduate of the Executive Fire Officer Program through the National Fire Academy.
