Autism: A Different Perspective

A Guide for Emergency & Medical Care Professionals

By Jeannine Batchelder

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Copyright © 2016 by Jeannine Batchelder. All rights reserved. No parts of this manual may be reproduced or transmitted by any processes whatsoever in any form without the express written permission of the author and copyright owner. Printed in Minnesota, United States of America Distributed by Jeannine Batchelder. Queries regarding rights and permissions, as well as requests for additional copies should be addressed to: Jeannine Batchelder jeannine.batchelder@yahoo.com 651-246-2258

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Acknowledgements Cheryl Skillings: You have taught me the value of working and being part of a community. You have taught me to dream and to set goals to reach those dreams. Thank you for instilling the value of education within me and for encouraging me as I accomplished my goal of earning my Master’s Degree. Thank you for all of the love and support you have given me. I love you Mom. Ken La Casse: Thank you for all of the love, support, and encouragement you have given me throughout the years. Even though we have not lived in the same state for the past several years, I know that you are here for me and that I always have a place to go when I need to recharge. I love you Dad. Jason Batchelder: Thank you for being my husband, my friend, my partner, and my biggest cheerleader. Your love, support, sense of humor, and encouragement mean the world to me. I love you with all of my heart. Michelle La Casse: You are not only an amazing sister, you are also one of my best friends. Thank you for all of your feedback, support, and comic relief you have given me while I have been working on this manual. Eileen, Brian, Padraig, and Nuala Foley: I am blessed to have become a part of your family. You have taught me about patience, flexibility, and family life in the world of autism. Being a part of your world inspired me to learn more about autism and to create this manual. What started out as a part-time job seven years ago became a gift of being part of an amazing family and I love you all very much. Meghan Williams: Thank you for your support, encouragement, and for sharing your knowledge of autism with me. I respect you as a colleague and appreciate the time taken to mentor me. I enjoy both learning from you and with you and I cherish your friendship.

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Table of Contents Introduction: Purpose of Manual 6

Part 1 What is Autism?

What is Autism Spectrum Disorder? 8

Autism Facts and Statistics 9

Common Characteristics of Autism 9

Where Does Aspberger's Syndrome Fit? 10

Common Characteristics of Asperberger’s Syndrome 10

Myths Regarding Autism 11

Autism Lingo 12

Overview of Causes 13

Autism and The Brain 14

Boys Versus Girls 15

Part 2 Common Challenges in Autism

Developmental Differences 18

Sensory Processing Differences 19

Communication Differences 21

Co-morbid Medical Conditions 23

Autism and Mental Health 24

Part 3 Implications and Strategies

Parents and Caregivers as Collaborators 26

Implications For Emergency Services Responders & Medical Care Professionals

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Implications For Nurses & Medical Care Professionals Strategies for working with Individuals with Autism

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A. General Strategies 29 B. Strategies for Working with Children 29

Appendix

Autism Resources 34

References 35

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Purpose of Manual “Statistically, people with autism have seven times more contact with emergency services responders than the average person” (Good, 2011, p. 42). There is little education or training provided to front-line emergency response technicians, paramedics, firefighters, and nurses on the characteristics and challenges that individuals with autism may present. With the growing number of individuals that are being diagnosed with autism, it is more likely that emergency and medical care professionals will be providing medical care to individuals with autism. Using an Adlerian approach of holism, each person is “an indivisible unit and the person needs to be understood in his or her totality” (Mosak & Maniacci, 1999, p. 14). The purpose of this manual is to give emergency and medical care professionals a resource to use when working with individuals with autism. This manual is written to be a guide to provide an overview on autism for medical care providers and emergency responders. The overall goal that this writer focused on for emergency and medical cares providers is to facilitate understanding of the challenges that individuals with autism may face in an emergency situation or within a medical care environment. Being more knowledgeable regarding the characteristics and challenges that individuals with autism may present, emergency and medical care professionals will increase the likelihood that individuals with autism will get their safety and medical needs met. A second goal that this writer has in regards to this manual is to encourage social interest, also described as a community feeling. As stated by Griffith and Powers (2007, p. 11), “to see with the eyes of another, to hear with the ears of another, to feel with the heart of another (Adler, 1964a, p. 135).

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Part 1

What is Autism?

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What is Autism Spectrum Disorder? Autism Spectrum Disorder or ASD is a developmental difference that has been defined by the National Autism Society (2015):

Autism Disorder or ASD is a bio-neurological developmental disorder that generally appears before the age of three. Autism impacts the normal development of the brain in the areas of social interaction, communication skills, and cognitive function. Individuals with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities.

According to the Diagnostic and Statistical Manual of Mental Disorders, fifth edition, also referred to as DSM-5, “autism is a developmental disability that is diagnosed based on two areas of disorder”. These areas are defined as:

1. “Persistent deficits in social communication and social deficits across contexts, not accounted for by general developmental delays”

2. “Restricted, repetitive patterns of behavior, interests, and activities” (American Psychiatric Association, 2013).

While there are some common characteristics with autism, it is important to remember that autism varies from person to person, which is why it is called Autism Spectrum Disorder. This manual is to be used as a guide, as the characteristics of autism vary between individuals and environmental factors will impact each individual differently. As Alfred Adler stated, “everything can always be different.”

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Autism Facts and Statistics The following facts and statistics were provided by the National Autism Association (2015).

Autism now affects 1 in 68 children.

Boys are four times more likely to have autism than girls.

About 40% of children with autism cannot speak. About 25-30% of children with autism have some words at 12 to 18 months of age and then lose them. Others might not speak until later in childhood.

Autism is the fastest growing developmental disorder, yet the most underfunded.

According to the Autism Fact Sheet (2015), “more than 3.5 million Americans live with autism” (Buescher et al., 2014).

Common Characteristics of Autism

Does not maintain eye contact or smile when smiled at.

Does not understand what gestures mean.

Does not understand social cues.

Has a difficult time transitioning from one activity to another.

Has a difficult time when an activity or schedule does not go as planned.

Has a preoccupation with objects or activities.

Has difficulty socializing with others.

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Where Does Aspberger's Syndrome Fit? Recent revisions to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) have merged Aspberger's syndrome with autism. However, one of the main differences that distinguished those previously diagnosed with Aspberger’s syndrome is the fact that Aspberger’s syndrome does not typically involve a speech delay and autistic symptoms are typically less severe. According to the American Academy of Child & Adolescent Psychiatry (AACAP):

The decision to combine the categories grew out of research demonstrating that Aspberger’s was not actually a separate “disorder”. Instead, children previously diagnosed with Aspberger’s were better and more accurately described as having a disorder on the autism spectrum (AACAP, Facts for Families, 2013).

Common Characteristics of Aspberger's Syndrome An individual with Aspberger’s syndrome may display the following characteristics: (Shore & Rastelli, 2006, pp. 72-73).

Concrete “Black - and - white thinking

No significant clinical delay in verbal communication

Desire to have friends without knowing how to make and keep them

Sensitivities to sight, touch, hearing, taste, and smell As explained by Shore & Rastelli, (2006, p. 31),

Many people with Aspberger’s are naive and easily taken advantage of others because they interpret situations at face value and miss social cues. Generally, “Aspies” lack common emotional responses and must learn appropriate social skills to function in society.

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Myths Regarding Autism Due to the fact that autism is still being researched and it still remains to be understood by the general population, there are many myths that are believed regarding autism. Myth 1: Everyone with autism has an extraordinary talent (Rain Man)

While some individuals do excel in one area or talent, many individuals do not have any particular special talent (Sicile-Kira, 2004, p. 2).

Myth 2: Everyone who has autism is a genius

While it is true that some individuals with autism are geniuses, not everyone is. “Beethoven, Isaac Newton, and Einstein have all been mentioned as famous people who could have been diagnosed with autism” (Sicile-Kira, 2004, p. 3). But while there are individuals with autism who would be labeled as a genius, many more individuals are not.

Myth 3: Everyone who has autism is mentally challenged

“Because of the nature of autism, it can be difficult to determine the cognitive level of each individual. The population of individuals with autism is much like the general population: some individuals have special talents, some are geniuses, some are mentally challenged, and some are average” (Sicile-Kira, 2004, p. 3).

Myth 4: Everyone who has a symptom of autism is on the spectrum

“If an individual exhibits one or two characteristics of autism, it does not necessarily mean the individual has autism” (Sicile-Kira, 2004, p. 4).

Myth 5: Individuals with autism do not have emotions and do not get attached to other people

Individuals with autism can feel emotions intensely and can become overwhelmed by the emotions of other people around them. Individuals with autism may be “less expressive than others about their feelings, but that does not mean that they are not attached to others” (Sirile-Kira, 2004, p. 6).

Myth 6: Individuals can only be diagnosed with autism as a child

Individuals can be diagnosed with autism at any age. A growing number of adults are seeking assessments and getting diagnosed at an older age.

Autism Lingo There are terms that are commonly being used by parents, caregivers, siblings, etc.

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when referring to the behavior of an individual with autism. Individuals with autism also use some of these terms when speaking with other individuals with autism. “Aspie”

o A word used by some individuals diagnosed with Aspberger’s Syndrome as a way to refer to themselves.

Echolalia

o Repeating words and phrases while having no apparent understanding of their meaning or the context in which they are used.

Fidgets

o Objects, such as toys, that individuals with autism use to help stay focused, manage daily stress, and provide a calming influence for their emotions.

Meltdown

o When an individual with autism becomes overwhelmed by their emotions. Meltdowns can also occur when there is a change in routine or if the individual’s senses or over stimulated. At this point, an individual even with effective verbal skills may not be able to communicate that something in that individual’s environment is causing stress.

Neurotypical

o An individual who is not diagnosed with Autism Spectrum Disorder. Individuals with autism oftentimes use this term when referring to those individuals that are not diagnosed with autism.

Splinter Skills

o A skill or ability to do a complicated task, yet the individual cannot do some very basis tasks. Example: An individual is good with working with numbers, but cannot understand budgeting.

Stimming o People with autism may repeat certain behaviors, such as rocking, spinning,

flapping their hands, or reciting the same words or phrases. Stimming may also be done in reaction to an overactive nervous system, anxiety, or to reestablish awareness of their bodies in space.

Overview of Causes While the exact cause of autism has not yet been determined, there have been theories that are being researched. “These theories include the links among heredity, genetics, and medical problems” (Autism Society of America, 2015).

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According to the Autism Society of America (2015, para. 1), There is no single known cause for autism, but it is generally accepted that it is caused by abnormalities in the brain structure or function. Brain scans show differences in the shape and the structure in the brain in children with autism compared to neurotypical children. As explained in Frequently Asked Questions posted by Autism Speaks (2015),

Over the last five years, scientists have identified a number of rare gene changes, or mutations, associated with autism. A small number of these are sufficient to cause autism by themselves. Most cases of autism, however, appear to be caused by a combination of autism risk genes and environmental factors influencing early brain development. (autismspeaks.org, 2015, para. 1).

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Autism and The Brain Autism has been identified as a biological disorder that results from physical differences in the brain. “Research indicates that the areas of the brain that may be affected are the cerebellum, the limbic system, and the frontal lobe” (Luskin, 2013, p. 12). Cerebellum

o “Commonly referred to as ‘the little brain’, the cerebellum controls essential body functions such as balance, posture and coordination, allowing humans to move properly and maintain their structure” (MDhealth.com, 2016, para. 11).

Limbic System

o “The limbic system contains glands which help relay emotions. Many hormonal responses that the body generates are initiated in this area. The limbic system includes the amygdala, hippocampus, hypothalamus and thalamus” (MDhealth.com, 2016, para. 12).

Frontal Lobe o “This lobe controls several elements including creative thought, problem solving,

intellect, judgment, behavior, attention, abstract thinking, physical reactions, muscle movements, coordinated movements, smell and personality” (MDhealth.com, 2016, para. 5).

According to Luskin (2013, p. 12),

Much recent research has focused on differences in how parts of the brain connect with each other in someone with autism. There is increasing evidence to suggest that in a person with autism, different areas of the brain do not connect and communicate as effectively as in people without autism. A set of neurons critical for learning by imitation, mirror neurons, do not seem to work as effectively in those with autism.

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Boys versus Girls According to the Centers for Disease Control and Prevention (2014), “males are almost five times more likely to be diagnosed than females” (Jolly, 2015, p. 11). As explained in a study done by researchers at the Stanford University School of Medicine, “girls with autism display less repetitive and restricted behavior than boys do” (Digitale, 2015, para. 2). Behaviors are described as restricted due to the fact that individuals with autism are limited by their preoccupations and show inflexibility in the way they act. Some examples of restricted behaviors include hand-flapping, lining up toys, an intense interest in a certain subject, and resistance toward changes in plans.

Scientists were interested in comparing the expression of core features of the disorder between sexes because they have long suspected girls with autism may display symptoms differently, causing them to be under diagnosed or making it harder for them to get the most appropriate treatment (Digitale, 2015, para. 8).

“Researchers have found that there are differences in parts of the brain between girls and boys who exhibit repetitive and restrictive behaviors” (Haelle, 2015, p. 1 para 2). A second difference that was discovered is “differences in the gray matter in different parts of the brain between girls and boys among those with autism and more severe repetitive symptoms” (Haelle, 2015, para. 2, p. 2). Mental Health Issues For Girls According to Reynolds (2016, para. 5, p. 2.), “Research from 2011 found that many women who were later diagnosed as being on the autistic spectrum initially were thought to have learning difficulties, personality disorders, obsessive compulsive disorder, or eating disorders (Rivet & Matson, 2011). As explained by Reynolds (2016, pg. 2, para. 2),

Anorexia nervosa has been called “female Aspberger’s” because around one fifth of girls who present with anorexia have traits which are peculiar to the autism spectrum; around 20 to 30 percent of anorexic patients are perfectionists and demonstrate rigid modes of thinking and behavior, which are common autistic traits.

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Reynolds (2016), pp. 1-2) describes ways in which girls can present differently from boys.

• Boys with ASD tend not to appear motivated to be socially interactive, but girls on the spectrum do.

• Girls with Aspberger’s may be unnecessarily dependent on their mother (or other primary caregiver) whom they regard as their best friend.

• Boys engage in disruptive behavior, whereas girls may be persistently “ill” to gain what they want or to control their situation.

• Girls with ASD tend to act passively and ignore daily demands, while boys become disruptive in response.

• Girls tend to learn social behaviors by observation and copying, which can disguise their social deficits.

• Girls may find the idea of social hierarchy difficult, so they can respond inappropriately to people in authority.

• Children with ASD of both sexes need to learn the rules of “small talk” which they often find incomprehensible as a pastime. Girls’ difficulties tend to be masked by their passive behaviors and ability to mimic without understanding (Holtman et al., 2007).

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Part 2

Common Challenges in Autism

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Developmental Differences in Autism The following developmental barriers impact effective communication and the ability to socialize competently.

Sensory Processing Differences The Seven Senses

o There are five senses that people generally learn about at an early age: sight, smell, taste, touch, and hearing. These senses are referred to as “outer senses”. The two important inner senses are the vestibular and the proprioceptive” (Shore & Rastelli, 2006, p. 197).

Vestibular Sense

o Helps you keep your balance (Shore & Rastelli, 2006, p. 197).

Proprioceptive Sense

o Tells you where your body parts are in space and how much force you need to use to accomplish a task (Shore & Rastelli, 2006, p. 197).

All seven of the senses can be either insensitive or oversensitive to stimulation. The following environmental factors described by Brown and Elder (2014, p. 222), may cause sensory overload or be a distraction for an individual with autism (Aylott, 2008; Bolick, 2008; Murphy et al., 2011):

Lights: Especially bright or flashing. Fluorescent lights can seem like a strobe light to an individual with autism.

Noises: Any sound level can be distracting, ringing phones, noisy waiting rooms, alarms. Sudden loud sounds can induce a level of panic.

Textures: Unfamiliar sheets, bandages, paper on exam tables, tongue depressors. Any unwanted sensation can be a constant distraction.

Smells: Alcohol wipes, cleaning solutions, blood. Even undetectable smells can make an individual uncomfortable or ill.

Non-verbal behavior: Touching the patient, gesturing.

“The repetitive and stereotyped behaviors often exhibited by people with ASD may be adaptive responses aimed at ensuring that incoming sensory input is self-generated and therefore predictable” (Ashburner J., Bennett, L., Rodger, S., & Ziviani, J., 2013, 172).

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Sensory Processing Disorder Sensory processing disorder is one of the differences in the senses that an individual with autism may experience.

Sensory Processing Disorder (SPD), formerly known as Sensory Integration Dysfunction, is a neurological disorder causing difficulties with taking in, processing, and responding to sensory information about the environment and from within the individual’s own body. While SPD is a condition separate from autism, 80% of individuals with autism also have SPD (Moffitt, 2015, para. 1-2).

According to the Sensory Processing Disorder Resource Center (2016, para. 3), difficulty taking in or interpreting sensory input can lead to devastating consequences with:

• Interactions with others

• Daily functioning

• Social and family relationships

• Behavior challenges

• Regulating emotions

• Self-esteem

• Learning (sensory-processing-disorder.com)

Sensory Overload

o Sensory overload can occur when a sensory difference overwhelms the individual, making it difficult to focus. These individuals may also experience pain and distress as a result of too much stimuli in the environment. Here is an example how overstimulation affected an individual with autism (Sicile-Kira, 2004, pp. 266-267).

“I found many noises and bright lights nearly impossible to bear. High frequency and brassy, tin sounds clawed my nerves. Bright lights, mid-day sun, reflected lights, fluorescent lights; each seemed to sear my eyes. Together the sharp sounds and bright lights were more than enough to overload my senses. My head would feel tight, my stomach would churn, and my pulse would run ragged until I found my safety zone.“ - Liane Holiday Willey, Pretending to Be Normal

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Tactile Defensiveness o Hypersensitivity to touch

As described by Notbohm (2004), an individual who is tactile defensive is “trapped inside their own skin, unable to regulate unwanted sensations”. These sensations can include uncomfortable clothes, unwelcome touches from other people, and unpleasant textures while touching or eating (Notbohm, 2004, p. 12).

Keeping in mind the possibility that an individual may have sensory differences is an important key to communicating effectively with an individual with autism. These processing differences can be overwhelming to the individual, making it difficult for the individual to focus on communicating. Sensory differences may also increase behavior issues, which can make communication more difficult for the individual. “If we make the assumption that all behavior is movement, directed toward finding a way to belong, the issue of control becomes important” (Hartshorne & Herr, 1983, p. 397). Oftentimes autistic behavior is not aimless, but rather to help the individual attempt to have some control over their environment.

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Communication Differences Exposure Anxiety

o The stress and distress that an individual with autism may experience in highly stimulating and demanding environments (Aylott, 2010, p.48). Exposure anxiety can have an impact on an individual’s ability to communicate as described:

Exposure anxiety explains how an individual with autism may be able to communicate verbally and by non-verbal means in a quiet environment, yet may withdraw or “shut down” and refuse to engage in a busy environment with high noise levels and bright lights (Aylott, 2010, p. 48).

Executive Functioning

o Cognitive skills that are involved in organizing, planning, sustaining attention, and inhibiting inappropriate responses.

Difficulties in the areas of Executive Functioning can manifest themselves in many different ways. Some individuals pay attention to minor details, but fail to see how these details fit into the bigger picture. Others have difficulty with complex thinking that requires holding more than one train of thought simultaneously. Others have difficulty maintaining their attention, or organizing their thoughts and actions. Executive Functioning difficulties can also be associated with poor impulse control (Dedes, 2011, para. 2).

Theory of Mind

o “One’s ability to understand and identify the thoughts, feelings, and intentions of others” (Dedes, 2011, para. 3).

Implications for Social Interaction may include:

Difficulty explaining one’s behaviors.

Difficulty understanding emotions.

Difficulty predicting the behavior or emotional state of others.

Problems understanding the perspectives of others.

Problems inferring the intentions of others.

Lack of understanding that behavior impacts how others think and/or feel.

Problems with joint attention and other social conventions.

Problems differentiating fiction from fact. (Dedes, 2011, para. 5).

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Central Coherence o “The ability to focus on both details as well as wholes. People with autism

however; appear to have a heightened focus on details rather than the wholes, a cognitive style termed ‘weak central coherence’. (Winner, 2002, para 4). As explained by Temple Grandin (1995), “I cannot hold one piece of information in my mind while I manipulate the next step in the sequence (Winner, 2002, para. 4).

Manifestation in individuals with social difficulties may include:

Inability to integrate information into the “Big Picture”

Consumed with details

Inability to effectively summarize (Kowalski, 2016, para. 1). As explained by Aylott (2010, p. 49), “individuals with Autism are more likely to communicate through a range of different mediums. For example, through behavior sensory expression, the use of pictures, objects of reference or signing, in addition to some spoken language”. While the individual may not have the social skills to effectively communicate their needs, the individual may use inappropriate social contact to engage with another person. “An example of inappropriate social contact would be to smell someone else’s hair or invading their personal space” (Aylott, 2010, p. 49). Communication is a way for individuals to get their needs met. Communicating effectively can be a challenge for individuals with autism. “The frustration of being unable to communicate with others can lead to behavior outbursts in some children. These behaviors have a wide range of expression and can be aggressive physical behaviors, self-harming behaviors, or loud vocalizations” (Brown & Elder, 2014, p. 221).

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Co-Morbid Medical Conditions While children with autism have the same basic medical needs as all children, there are several conditions that are common among children with autism. These medical conditions may require special medical care. Feeding Problems

o There are several common feeding problems which include; food selectivity, food allergies/intolerances, and sensory processing difficulties. As described by Zeratsky (2015 para. 1-2):

It is common for children with autism to eat only a few foods, to prefer highly processed foods, and to eat fewer fruits, vegetables, and whole grains. Children with autism may have nutritionally poor diets and weight related health issues, which can extend into adulthood. Adults with autism are at increased risk for obesity, high blood pressure, and diabetes.

Gastrointestinal Problems

o “The most common GI symptoms are abdominal pain, chronic constipation, abdominal bloating, and diarrhea” (Olivie’, 2012, p. 746).

Voiding Problems

o “Some children have sensory issues and find the sensation of bladder contraction unbearable. Other children may ignore the signals from their bladder and wet themselves due to focusing their attention elsewhere” (Olivie’, 2012, p. 746).

Sleep Disturbances

o “Sleep disturbances in children and adolescents with autism are common, with a prevalence of 44% to 83%. The most frequent sleep disturbances include sleep-onset insomnia, night awakenings and irregularities of sleep-wake cycle, including early morning awakenings” (Olivie’, 2012, p. 745).

Epilepsy

o “Epilepsy is known to be significantly associated with autism. The reported prevalence of epilepsy among individuals with autism ranges from 8% to 42%” (Olivie’, 2012, p. 744).

Dental Care

o “Children with autism have an increased risk of developing cavities and periodontal disease. Poor dietary habits, the effects of prescribed medications, increased or decreased saliva production, damaging oral habits, and sensory sensitivities can impede adequate oral care” (Olivie’, 2012, p. 746).

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Autism and Mental Health “Almost 30% of children aged 10 to 14 years with autism suffer from social anxiety disorders” (Howlin & Moss, 2012, p. 280). It is beneficial to develop a plan of treatment for these individuals early on to address these mental health challenges. “Adults on the autism spectrum can be prone to depression and other mental health problems such as anxiety and obsessive-compulsive disorders (OCD), especially in late adolescence and their twenties” (Morris, 2008, para. 1). But due to communication differences, it is very common for adults with autism to go undiagnosed for mental health issues until the symptoms are severe. According to Howlin and Moss (2012, p. 280), “although reported rates of specific mental health disorders differ from study to study, the most common diagnoses relate to anxiety, OCD, and depression (often in combination)”.

Autism and Suicidal Tendencies

“In a recent study published in the journal Research in Autism Spectrum Disorders, Angela Gorman and colleagues identified a number of risk factors associated with thinking about suicide and suicide attempts in children with ASD” (McDougle, 2013, para. 3-4).

Through parent interviews, the researchers inquired about 791 children with autism, 186 typically developing children, and 35 non-autistic children with diagnosed depression. The percentage of children rated by their parents as “sometimes” to “very often” contemplating or attempting suicide was 28 more times greater than those with autism than those with typical development. Depression was also the strongest single predictor of suicidal thoughts or attempts among the children with autism.

Depression and behavior problems were highly linked with suicide contemplation and attempts, as are being teased or bullied. According to Shore and Rastelli (2006, p. 89), “research indicates that 94 percent of children with ASD are bullied in school”. Bullying can have significant negative effects for children, such as depression and poor self-esteem. “For those with autism, an even greater reluctance to engage in social interaction for fear of reprisal” (Shore & Rastelli, 2007, p. 90) can also be a negative effect.

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Part 3

Implications and Strategies

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Parents and Caregivers as Collaborators To help provide the most effective medical care and address safety needs, “it is important that people with learning disabilities and their families, caregivers, and supporters are acknowledged as experts” (Blair, 2011, p. 24) when it comes to the care needs of their child with autism. To better understand the individual with autism, it is important to identify the family system. It is beneficial to see each individual within a social context to better understand his or her lifestyle. Lifestyle is how an individual navigates through their life, as well as how the individual's “basic convictions concerning self, others, and the world” (Griffith & Powers, 2007, p, 63).

Implications for Emergency Service Responders Characteristics that contribute to contact with emergency services responders include extremely high pain tolerance, avoiding physical contact, responding inappropriately to loud noises, and failure to recognize dangerous situations. As Good (2011, p. 42) explains:

These tendencies place individuals with autism at a much higher-than- average risk of death or injury. Further, these individuals may be unaware of their injuries or unable to communicate effectively, and they may fight or flee from emergency responders.

Autism and Wandering-Elopement According to the National Autism Association (NAA) Safety Initiative (2015, para. 2), “similar to wandering behaviors in the Alzheimer’s community wandering behaviors in children and adults with autism have led to countless tragedies across the country”.

More than one third of children of children with autism who wander are never or rarely able to communicate their name, address, or phone number.

Roughly half of children with autism attempted to wander from a safe environment, a rate nearly four times higher than their neurotypical siblings.

In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with autism ages 14 and younger. (Autism Safety Initiative, 2015, para. 4)

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Tips for Interacting with a Wanderer with autism

Check individual for Identification - It may be on the shoe or in a pocket.

Reduce stimuli (bright lights, loud noises, commotion).

Avoid giving complex directions. Use simple phrases.

Do not assume that the individual understands.

Provide communication aids if possible.

Use communication techniques to ease anxiety. For example, “First we are going to get into the white car. Then you can have a cookie”. Instead of: “What is your phone number?” Say, “My phone number is______” (Autism Safety Initiative, 2015, para. 7)

Fire Service Related Challenges Individuals with autism often deal with increased sensitivities to auditory, tactile, and visual stimuli. These heightened sensitivities increase stress levels, which may complicate matters for the individual during a crisis. Overstimulation is a significant problem for children with autism. Studies have been done regarding children with autism and their potential responses to smoke alarms and forcible entry. The results of the studies are explained based on the information provided by parents with children diagnosed with autism. The responses that were compiled give insight into the challenges that emergency responders may face in emergency situations. Smoke Alarms:

One third of the families reported that smoke alarm activations caused sensory overload issues for their children.

Another third of the families believed that their child would not respond to a sounding smoke alarm.

Nearly one half of the families were concerned that their child would hide rather than move to safety during a fire.

One fourth of the families were concerned that their child would flee and continue to run.

Roughly one half of the families did not have a home fire escape plan in place; less than one third of those families who did have a plan reported that they practice their plan at least annually (Good, 2011, p. 42-43).

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As explained by Good (2011), “pain or stress may lead the person with ASD to try to escape or dart around without any particular direction and misdirected aggression. None of these behaviors are tantrums” (Good, 2011, p. 43).

Forcible Entry: “Forcible entry is often necessary in structure fires and individuals with autism are more likely to hide from rescuers or become combative in situations where the individual must be moved quickly” (Good, 2011, p. 43).

70% of parents reported that they could not leave their child home alone.

Almost three fourths of the parents reported that they use alternative locking and latching devices on doors and windows to prevent their child from escaping. Having a child escape is a concern for a majority of families caring for a child with autism (Good, 2011, p. 43).

Implications for Nurses and Medical Care Professionals As more individuals are being diagnosed with autism, it is imperative for nurses and care professionals in any setting to understand the challenges that individuals with autism face. Due to the co-morbid medical conditions that individuals with autism experience, individuals with autism are more likely to use health care services than individuals without autism. Pediatric Nurses Communication is one of the main challenges for children with autism. As explained by Bateman et al. (2010, p. 249), developing an effective system of communication with the child with autism can be one of the biggest challenges for nurses. Nursing staff will need to develop a close partnership with families and caregivers to establish effective and consistent communication strategies for children with ASD (Bateman et al., 2010, p. 249). Communication differences can vary with each child, so each child will need an individual plan. “Be aware that facial expressions and gestures often used to soothe or reassure a child in distress may be ineffective when interacting with a child with ASD” (Bateman et al., 2010, p. 249). As explained by Brown and Elder (2014, p. 221), when assessing communication skills, it is important to remember that children with ASD may have more words in their vocabulary than they understand” (Hudry et al., 2010).

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Strategies for working with Individuals with Autism A: General Strategies

Say the individual’s name before you start talking to them so that they know that you are addressing that individual specifically.

Approach the individual slowly to allow the individual time to process what is about to happen. Avoid touching the individual unless it is necessary.

Tell the individual what you are doing before you do it.

Do not assume that if the individual is not looking at you that they are not listening to you.

Ask the individual, “What are you thinking?” rather than, “What are you feeling?”

Remember that there are 10 to 15 second delays for individuals to process the information that has been presented. Allow time for these delays.

Be alert and prepared to move back, stop talking, or change the way that things are being done if the individual seems to be communicating distress or being touched is creating anxiety.

All individuals have universal goals to find significance, safety or security, and a feeling of belonging. Keeping this goal in mind can help professionals interact more effectively with individuals with autism. B. Strategies for Working with Children “Children with ASD tend to be visually oriented. The use of pictures, sign language, word processing, texting, and modeling are all methods that can be employed to communicate” (Bateman et al., 2010, p. 250). Repetition is also key to helping reinforce the information that is being conveyed.

Breakdowns in Communication “Breakdowns in communication are usually signified by requests for clarification, ignoring of requests, or wrong response to requests. Repair strategies include repetition, modification, or recasts, which contains none of the language from the original message” (Brown & Elder, 2014, p. 223).

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Outbursts Often, behavioral outbursts in children with autism are attributed to frustration due to inability to communicate with others. Be aware that increasing agitation is oftentimes a sign of an impending outburst for a child with autism.

During the outburst:

Do not physically intervene unless there is risk for harm to the child or others.

Stop talking; only use essential words.

Use short sentences.

Use a low volume and pitch when speaking.

Make eye contact.

Slow your movements.

Be patient (Brown & Elder, 2014, p. 223).

Mimicking Oftentimes, autistic behaviors are “very important to the child, and may help explain why they are so resistant to change” (Hartshorne & Herr, 1983, p. 397). Mimicking the behavior of the child can lead to a connection with the child. For example, buzzing your lips in response to the child buzzing their lips.

Encouragement and Four Crucial Cs All behavior has a purpose and when a child is misbehaving, the key purpose is to express discouragement. Providing encouragement, a child will try to be useful, and is more likely to cooperate with others. This encouragement attributes to the four Crucial Cs.

1. A child feels as though they count.

2. A child feels a sense of connection, which leads to trust.

3. A child feels capable of contributing to those around them.

4. A child feels courageous.

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Pediatric Acute Care Nurses According to Jolly (2015, p. 11-12), “a study by Lokhandwala, Khanna, and West-Strum (2012), also indicates that children with ASD are hospitalized 1.5 times longer than those without the disorder”. Knowledge of ASD can help prepare medical care providers to provide specialized care to children within the hospital setting. “This should decrease anxiety levels of the nurse, the child, and the family while also contributing to an increase in patient and personnel safety during an inpatient hospital stay” (Jolly, 2015, p. 12). As described by Jolly (2015, p. 13-15), there are key pieces of information and approaches that can be incorporated into each child’s plan of care.

Partner with family members to determine the best method of communication, identify triggers, and what elements may cause increased anxiety.

Establish a clear method of communication with the child. Identify the manner in which the child best understands information and how the child best expresses needs.

Regulate the child’s schedule and abide by as much of the home schedule as possible. Keeping meal times, activities of daily living care times, and play times the same can decrease anxiety and agitation levels of both the child and the family (Scarpinato et al., 2010).

Encourage the child’s family to bring in favorite objects to act as a source of comfort.

The nurse caring for the child should advocate to minimize interruptions to the child’s sleep pattern because children with ASD often struggle with sleep (Myers & Johnson, 2012).Work with the family to identify if the child is particularly agitated by touch, sound, smell, sight, tastes, or food.

Some general practice guidelines for children with ASD in the hospital should include keeping the lights low, decreasing noise levels in the room and surrounding areas when possible, and decreasing stimulation (Johnson, et al., 2012).

Many children with ASD respond well to reward systems, which may be a way to overcome a child’s increasing frustration (Johnson et al., 2012). For example, offering a reward each time a child successfully takes a medication can establish a pattern of positive reinforcement.

Determine the best methods to comfort the child and then incorporate the methods into the hospital stay.

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Support the family and encourage them to stay with the child. Having a familiar face at the child’s bedside during hospitalization may decrease challenging behaviors, which may also increase the level of staff, patient, and family safety.

Record information and place it inside the child’s room or exchange the information on a form from shift to shift, which may improve hospital personnel safety and decrease the child and family’s anxiety levels.

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Appendix

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Autism Resources Autism Society of America Website: autism-society.org Phone: 800-328-8476 Autism Society of Minnesota Website: ausm.org Phone: 651-647-1083 Address: 970 Raymond Avenue Suite 101 St. Paul, MN 55114 Autism Speaks Website: autismspeaks.org Phone: 888-288-4762 MN Department of Human Services: Children’s Mental Health Division Website: DHS.info@state.mn.us Phone: 651-431-2321 Address: PO Box 64985 St. Paul, MN 55164-0985 National Autism Association Main Website: nationalautismassociation.org Safety Website: autismsafety.org Wandering Prevention: awaare.org Phone: 877-622-2884 National Center for Missing & Exploited Children Website: www.missing.kids.org Phone: 1-800-THE-LOST

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