Autism spectrum disorder (ASD) is a diagnosis that has been around for a very long time but is becoming increasingly more common for emergency medical services personnel to encounter. Quality of care and correct care comes down to having a basic understanding of ASD. Autism spectrum disorder is a disability that causes delays in communication, social interactions, and restrictive and repetitive behaviors. The knowledge of the disorder and ability to handle these types of calls can be achieved with some in-house aining that reviews the disorder. There is no one set-in-stoneay to treat and individual with ASD. Developing a standard of care would be nearly impossible as individuals have varying levels of cognitive delay or disability. Knowing when it is appropriate to approach, touch, or interact will greatly improve the patient encounter. Medical personnel should interact with the caregiver of that patient to gather information pertinent to the patient. The risks and behaviors of ASD patients can vary from normal interactions to potentially dangerous. Being comfortable with spending the extra time, if appropriate, will likely result in a safer, more efficient encounter for the patient, EMS, and bystanders. Standardized training for EMS personnel that covers the autism spectrum disorder, traits, and behaviors is what is needed to ensure safe and reliable care for all parties involved during an emergency situation.
Introduction
Autism spectrum disorder (ASD) is becoming more prevalent in today’s society, which means we as medical professionals need to be well informedo we can provide the best quality care. As emergency medical services (EMS) personnel we have a unique challenge of treating ASD individuals during times of crisis. “As a result, it is clear that the health care system and medical providers of all types will need to become more educated on the needs of individuals with ASD”. (McGonigle et al., 2014) To provide the best quality of care we need to have a basic knowledge of the autism spectrum disorder and how to approach and communicate with these individuals. Autism used to be diagnosed as either Asperger’s syndrome or autism depending on the severity, but now it is all autism spectrum disorder. “Autism spectrum disorders (ASD) are severe neurodevelopmental disorders, characterized by impairments in social interaction, verbal and non-verbal communication, along with a restricted repertoire of activities and interests”. (Duifhuis et al., 2017) There are common characteristics among all levels of ASD, but the severity is what will differ. Even with similarities it does not mean that if ne meets a person with autism that they have met them all. Some areas have even started autism-specific training to help inform emergency medical services personnel about autism spectrum disorder as well as common approaches to take with these individuals. Research has shown that by having EMS personnel more familiar with how to approach and communicate with ASD individuals the outcomes are better and the quality of care is better. First the individual must have a basic knowledge of what autism spectrum disorder is.
Autism spectrum is a developmental disability that causes delays in communication, social interactions, and restrictive and repetitive behaviors. Individuals with ASD tend to be very rigid and require a strict schedule. They do not do well with change and will show resistance when changing activities or situations. Often, they are diagnosed with pervasive developmental disorder and delayed speech communication at a young age before autism spectrum disorder is diagnosed. Some are as young as two years old when they are diagnosed. It is a lifelong disability that can become more severe with age but with proper therapy and support will get better and individuals will become less rigid. Sensory impairments are common among individuals with ASD as well. Loud and sudden sounds will cause a reaction. Bright lights, textures of items or foods, clothing tags, ground textures, and tight-fitting clothing are also things that can cause a sensory reaction. When there is a sensory overload as they call it, the individual will behave in a way to get rid of the stimulus. Sometimes individuals with use self-harm to get rid of a stimulus. Hand flapping, walking on toes, cover their ears, and removing themselves from the stimulus are other ways they will react to overstimulation. Autism spectrum disorder individuals may also develop schizophrenia, attention-deficit disorder, epilepsy, depression, anxiety, obsessive-compulsive disorder, and bipolar disorder, to name a few.
Due to autism spectrum disorder encompassing many disorders with many characteristics with varying severity, it can often be hard to diagnose. Some studies have shown that autism spectrum disorder characteristics can start as early as nine months. During infancy developmental delays can show, such as social and communication delays. This does not mean that an infant should be talking but there are certain criteria that an infant must meet in the social and communication categories. An individual is not screened for autism spectrum disorder until between 18 months and 24 months of age. Even though the true cause of autism is not well known the screening will occur at these earlier ages if there is a family history of ASD, a sibling with ASD, the parents are of older age, low birth weight of the child, and certain genetic conditions. Since the characteristics can be mild to severe, the child may be diagnosed with pervasive developmental disorder before they are screened for and diagnosed with autism spectrum disorder. If the developmental delays continue then the child will be seen by a team of specialists to include a developmental pediatrician, child psychologist or psychiatrist, neuropsychologist, and speech and language pathologist. Some physical tests include hearing and vision screening. Once a diagnosis is made then treatment can start.
Usually the child will have already been seeing a speech and language pathologist by the time they are diagnosed, but they can add additional therapies to help with the other characteristics of ASD. Therapies can include occupational therapy, behavioral therapists, family psychology sessions, and educational therapies. These therapies work to help the individual become less rigid and loosen some of the restrictive and repetitive behaviors. They can help the individual and the family cope with the diagnosis as well as how to interact with them.
Previous research has shown the wide variability in spoken language skills in young children on the autism spectrum, with a subgroup of children failing to develop spoken language skills and others showing spoken language performance within normal limits, based on norm-referenced testing of language”. (Westerveld & Roberts, 2017)
Communication can be the most helpful because when an individual with autism struggles to communicate it can often lead to violent behaviors because they cannot express what they want. Autism spectrum disorder does not cause violence; it is the rigidness and resistance to change that can cause self-harm and violence towards others. Medication is another treatment that can help with some of the other disorders associated with autism spectrum disorder. Medications that effect mood are used as a trial and error until the right medication is found to help with these behaviors. Self-harm and violence can be scary for the individual and the other person(s) involved. People view autistic individuals as violent but most of the time their actions are due to an inability to express themselves. Autism itself does not cause death but the behaviors can lead to risky behaviors.
Self-harm is a very common behavior with autistic individuals along with having no fear in certain social situations. Injuries due to suffocation, asphyxiation, and drowning are among the common causes of injury to autistic individuals. Injuries from assaults, homicides, and suicides are also common among this group. Now that autism is better understood and diagnosed more often there is a greater chance of encountering an individual with autism spectrum disorder in an emergency situation. Drowning is more common among younger individuals and what one hears about most in the media. In recent years there has been an increase in programs to help reduce drowning deaths in individuals with ASD to include public awareness and swimming lessons. Autism spectrum disorder individuals are often said to have no fear of the water; hat we perceive as a danger they may not. Individuals without ASD can see there is a pool and know if they cannot swim then they do not get in but an ASD individual only sees inviting water. Public awareness about autism has helped others without autism interact with those who do have it. Since this is a lifelong disability, one will likely encounter adults who have autism spectrum disorder and they are prone to injury as well, even though individuals 15 years and younger are three times more likely to suffer injuries especially suffocation, asphyxiation, and drowning. That being said all medical personnel still need to understand how to communicate and approach people who have ASD.
Impaired communication is one characteristic common among all levels of the autism spectrum disorder. Some individuals never learn to communicate fully while others low on the autism spectrum will develop communication but still may not be able to express fully what they are feeling. Even with those who develop normal communication but are unable to express their feelings will express anxiety or apprehension in other ways. Lack of eye contact is a way to sense apprehension or anxiety from them. Individuals who are high functioning can get frustrated with not being able to communicate their emotions and feelings and this can lead to them making extreme statements, even threatening suicide so people understand that they are truly in distress but are unable to express what they are feeling. “Communication barriers, difficulties with social engagement, and reactivity to changes in routine and to sensations such as touch, sound, light and odor can interfere with assessment and treatment”. (Zwaigenbaum et al., 2016) With the right training each individual can learn what questions to ask to help facilitate the expressions of their feelings and even find out ways to help calm them. Often people think that since a person is affected by autism spectrum disorder it also affects their intellectual ability as well, but that is not always the case. Individuals with ASD most often have normal intelligence level, some even above average. There is no need to “dumb down” language for these individuals; the best way to avoid this is by finding out what words they use to express themselves. Always start by asking the person themselves what they use to express pain especially if they are high functioning. High- functioningndividuals will be just like any other individual; you may just notice they make less eye contact, fidget, and will avoid physical contact such as a handshake. Those individuals that are more severe will usually have a caregiver who could be family or therapist, and you can ask how the individual expresses pain or discomfort. Always try to treat them like any other individual and use their body language cues to adjust how contact is made. Some individuals may use alternative forms of communication such as sign language or communication boards. Autism awareness training for EMS and other healthcare professionals can help with the interactions of individuals with autism spectrum disorder.
“Perhaps the first issue that must be kept in mind is: ‘once you have met one person with autism, then you have met just one person with autism’. In other words, it is not appropriate to pursue a one-size-fits-all approach to healthcare delivery, even though many people who are on the autism spectrum are likely to share similar healthcare issues, needs and expectations”, (Barber, 2017)
By implementing autism awareness healthcare workers will have a better understanding of how to interact with individuals with ASD. Some basics would be knowing their communication patterns and their comfort level with touch. Oftentimeshen trying to touch an individual with ASD and they are not comfortable they may run away or become violent. If they are having trouble communicating they can become increasingly frustrated and agitated, which can lead to self-harm or violent behaviors. It also helps when healthcare individuals understand that cognitively individuals with autism spectrum disorder will be delayed. If encountering a high functioning adult who is cognitively like a teenager or preteen communication techniques have to be altered. Knowing their cognitive function will help with interactions with them and the approach used. For example, if encountering a high functioning teenager that has moderate cognitive delay approach them as if a child versus a teenager who can fully express themselves. By having some standard training healthcare workers can treat individuals with autism spectrum disorder just as they would with others without it. Another important aspect of standard training about ASD is that healthcare workers can learn to recognize other things such as self-harm and depression in autistic people that can lead to suicides and further decompensation of their emotional well-being. Through research and training some places have even come up with sensory friendly waiting rooms and sensory friendly exam rooms to help keep stimulation low with individuals with ASD. Since any new environment is going to cause an increase in anxiety knowing how to reduce stimulus can vastly improve their interactions with personnel and the visit will be more productive. Emergency situations present a unique situation with regards to stimulus.
Lights and sirens can be frightful for anyone, but for an individual with autism spectrum disorder it can be so overwhelming that is can cause an ASD individual to shut down or even self-harm to reduce the stimulus. Since emergency services personnel are more likely to come into contact with ASD individuals due to the increased chance of injuries it is important to know how to interact and reduce as much stimuli as possible. If lights are sirens are not needed once on scene then turning them off could be the most helpful thing for an individual with autism.
“We noted that individuals with autism spectrum disorder, again due to their impairments with communication, may not verbally express their chief complaint or history of present illness, but rather present with deviations from baseline patterns of behavior as the manifestation of acute illness (e.g., changes in oral intake or self-injurious behavior as a means of expressing pain of varying origin”. Venkat, Migyanka, Cramer, & McGonigle, 2016)
Sometimes individuals with autism can act aggressively when overstimulated which can lead to a scenario where they may not get the help they need or are deemed suicidal or homicidal and the true nature of their call is not taken care of. “We also found that deaths in individuals with autism were nearly 3 times as likely as were deaths in the general population to be caused by unintentional injury”. (Guan & Li, 2017) Turning lights off and sirens off this can reduce that, but that is not always the case and they may be needed so knowing how to deal with that situation will give confidence to an EMS worker. Research has shown that having this baseline knowledge will help reduce injuries to the patient, EMS worker, and bystanders. It also shows that the training also leads to greater levels of comfort among EMS workers in treating individuals with ASD. Some have found that the stretcher can also be another negative stimulus for individuals with ASD. If all possible it was found it is best to have them walk to the stretcher, bring items of comfort, and have a caregiver or family go with them. Communication is another helpful part of training among EMS workers in dealing with encounters with ASD individuals. The comfort level was increased among the EMS worker if they knew how to more effectively communicate with an autistic individual, such as using a communication board and facial expression pain scale. Throughout all the research standardized training seems to be the most helpful.
With training comes comfort, but some already have that comfort level in dealing with interactions with individuals with autism spectrum disorder. I personally have an almost three-year-old son who was diagnosed with autism spectrum disorder at about two-and-a- half years old. My brother-in-law was also diagnosed with Asperger’s when he was younger. I can see some similarities between them because they were essentially diagnosed with the same level of autism. My brother-in-law was diagnosed during a time when not much was known about autism and that there was varying severity between these individuals. On the other hand, my son was diagnosed after the revision to the Diagnostic and Statistical Manual of Mental Disorders (DSM) was released, where autism is classified on a spectrum. My son is considered low on the autism spectrum, meaning he is high functioning. His language is moderately impaired as well as his social interactions. He started showing signs of communication and social delays during infancy, but later evaluations revealed they were not improving. We first started with speech therapy and occupational therapy to help with ways to figure out his needs. With the family history of autism and his social interactions along with moderately impaired language he was tested at about 30 months for ASD. There was follow up with a developmental pediatrician who agreed with the recommendations from the evaluation by the child psychologist that he was positive for being on the autism spectrum. He is considered high functioning and will soon see neuropsychology to confirm his cognitive function. The road to raising a child on the autism spectrum is a long one but rewarding. He is the reason I chose to research autism spectrum disorder so there can be better training for EMS and healthcare workers to improve interactions with individuals with autism spectrum disorder. I would want everyone to feel comfortable interacting with my child and anyone with ASD and this can be done by standardized training over the basics about autism.
Although autism has a spectrum, no one person with autism spectrum disorder is the same. With more individuals being diagnosed more frequently and the varying in severity, it is important for all healthcare workers and EMS workers to have some basic knowledge. It is known the most common causes of harm in this population are drowning, asphyxiation, and suffocation, so the chances of and EMS worker encounter a person with ASD is high. If they are not comfortable interacting due to lack of knowledge they will not be able to provide quality care that the autistic individual deserves. Just a basic knowledge of what autism spectrum disorder is, common characteristics, and ways to communicate can vastly improve interactions with individuals. There is no need to have advanced knowledge of ASD but to know that turning lights and sirens off, not to touch unless there is a need, and to let them have as much independence as possible can help EMS and healthcare workers provide that quality care every individual, even ones with ASD, deserves. Developing a similar strategy as the UK has in the Autism Act could go a long way in improving the training available to medical personnel.
“Fulfilling and Rewarding Lives’ states that Autism awareness training should be available to everyone working in health or social care (Department of Health 2010). Training must lead not only to improved knowledge and understanding but also to changes in the behavior and attitudes of health and social care staff. The strategy states that training should reflect the actual situations staff work in and that nonclinical staff must also be trained (e.g. administrative staff)” (Clark, Browne, Boardman, Hewitt, & Light,, A. 2014).
Continued research is needed as very little service needs are tracked once someone with ASD ages into adulthood. “Examining service use patterns of individuals with ASD and how they change as they age is a needed area of research for several reasons. This information is crucial in designing and delivering services to better meet their needs”. (Turcotte, 2016) It all boils down to comfort; if possible build comfort through knowledge then quality of care will go up. “Participants with past experience treating individuals with autism in an emergency situation also had higher mean comfort scores”. Wachob & Pesci, 2016)
References
Barber, C. (2017). Meeting the healthcare needs of adults on the autism spectrum. British Journal of Nursing, 7(26), 420-425. Retrieved from http://web.a.ebscohost.com.southuniversity.libproxy.edmc.edu/ehost/pdfviewer/pdfviewer?vid=5&sid=8ba7d809-1059-4a78-883b-7a499b559378%40sessionmgr4008
Clark, A., Browne, S., Boardman, L., Hewitt, L., & Light, S. (2014). Implementing UK autism policy and national institute for health and care excellence guidance-assessing the impact of autism training for frontline staff in community learning disabilities teams. British Journal of Learning Disabilities, 44, 103-110. Retrieved from http://0-eds ds.a.ebscohost.com.library2.pima.edu/eds/pdfviewer/pdfviewer?vid=1&sid=f9f80010-961d-4c5d-a6df-92bf76c58b24%40sessionmgr4007
Duifhuis, E., Boer, J., Doornbos, A., Buitelaar, J., Oosterling, I., & Klip, H. (2017). The Effect of Pivotal Response Treatment in Children with Autism Spectrum Disorders: A Non-randomized Study with a Blinded Outcome Measure. Journal Of Autism & Developmental Disorders, 47(2), 231-242. Retrieved from http://0eds.a.ebscohost.com.library2.pima.edu/eds/pdfviewer/pdfviewer?vid=25&sid=b6ec9e9a-1d15-4c57-b88a-387423641354%40sessionmgr4009
Guan, J. & Li, G. (2017). Injury mortality in individuals with autism. American Journal of Public Health 107(5), 791-793. Retrieved from
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McGonigle, J., Migyanka, J., Glor-Scheib, S., Cramer, R., Fratangeli, J., Hegde, G…. Venkat, A. (2014). Development and Evaluation of Educational Materials for Pre-hospital and Emergency Department Personnel on the Care of Patients with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders 44(5), 1252-1259.. Retrieved from http://0eds.a.ebscohost.com.library2.pima.edu/eds/pdfviewer/pdfviewer?vid=3&sid=73d9e6c4-4aad-4e71-bcf9-edfcc69eb9dd%40sessionmgr4006
Turcotte, P., Mathew, M., Shea, L., Brusilovskiy, E., & Nonnemacher, S. (2016). Service Needs Across the Lifespan for Individuals with Autism. Journal of Autism & Developmental Disorders 46(7), 2480-2489. Retrieved from http://0eds.a.ebscohost.com.library2.pima.edu/eds/pdfviewer/pdfviewer?vid=5&sid=73d9e6c4-4aad-4e71-bcf9-edfcc69eb9dd%40sessionmgr4006
Venkat, A., Migyanka, J. M., Cramer, R., & McGonigle, J. J. (2016). An Instruement To Prepare for Acute Care of the Individual with Autism Spectrum Disorder in the Emergency Department. Journal of Autism and Development Disorders, 46(7), 2565-2569 Retrieved from
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Wachob, D., & Pesci, L. (2016). Brief report: knowledge and confidence of emergency medical service personnel involving treatment of an individual with autism spectrum disorder. Journal of Autism & Developmental Disorders, 47, 887-891. DOI 10.1007/s10803-016-2957-4. Retrieved from http://web.a.ebscohost.com.southuniversity.libproxy.edmc.edu/ehost/pdfviewer/pdfviewer?vid=9&sid=8ba7d809-1059-4a78-883b-7a499b559378%40sessionmgr4008
Westerveld, M.F. & Roberts, J.M.A. (2017) The oral narrative comprehension and production on autism spectrum. Language, Speech, and Hearing Services in Schools, 48, 260-272. Retrieved from http://web.a.ebscohost.com.southuniversity.libproxy.edmc.edu/ehost/pdfviewer/pdfviewer?vid=3&sid=8ba7d809-1059-4a78-883b-7a499b559378%40sessionmgr4008
Zwaigenbaum, L., Nicholas, D., Muskat, B., Kilmer, C., Newton, A., Craig, W…. Sharon, R. (2016). Perspectives of Health Care Providers Regarding Emergency Department Care of Children and Youth with Autism Spectrum Disorder. Journal of Autism & Developmental Disorders, 46(5), 1725-1736. Retrieved from http://0eds.a.ebscohost.com.library2.pima.edu/eds/pdfviewer/pdfviewer?vid=2&sid=73d9e6c4-4aad-4e71-bcf9-edfcc69eb9dd%40sessionmgr4006
