AUTISM AS UNIQUE AS A SINGLE SNOWFLAKE Kimberly Martin, RN, BSN Autism As Autism Spectrum Disorder rises in prevalence, it is imperative nurses in any setting to understand the unique challenges of this population. There has been very little information and many misconceptions about best practices for improving care to children with ASD Autism Autism affects 1 in every 110 children (Center for Disease Control and Prevention [CDC], 2010). As the incidence of Autism increases, nurses will experience increased interactions with patients with Autism. Little awareness or education has been devoted to this complex neurological disorder and health professionals are left with unsuitable knowledge or tools available to properly care for this population of patients. Autism A course is designed to educate nurses about Autism, levels of impaired social interaction, communication needs, stereotypical behaviors, learning barriers, therapies, and nursing adaptations and tools that will increase the ability to provide integrated care for a child and family with Autism in the acute care setting. Objectives Purpose: The health care provider will demonstrate holistic care to a person with Autism in the hospitalized setting. Goal: To provide information, knowledge, and awareness about Autism so the health care provider can effectively provide care for patient with Autism. Objectives After completion of the course participants will be able to: classify the triad of impairments exhibited in the autistic spectrum. identify and discuss the presenting behaviors a person with Autism might display. discuss three therapies utilized in treatment of Autism. Objectives develop three nursing interactions required in caring for a person on the Autistic Spectrum. identify personal barriers when interacting with a person with Autism. examine a caring and effective approach with patient interaction in the clinical setting based on latest insights and tools Autism Misconceptions Assumptions about the child’s ability cannot be solely based on their diagnosis. There are many misconceptions regarding autism such as: Autism does not present as a learning disability Autism is just an emotional/behavior disorder Autism Misconceptions Children with autism grow up to be schizophrenic adults; Parents need to set firmer limitations and discipline when dealing with these children; Children with autism are usually mentally retarded Autism Autism is a developmental brain disorder that impairs basic behaviors needed for social interactions, such as eye contact and speech, and includes other symptoms, such as repetitive, obsessive behaviors. The symptoms sometimes cause profound disability, and they persist throughout life. Treatments may relieve some symptoms, but no treatment is fully effective in treating the core social deficits. Autism Autism Spectrum Disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior. Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form known as Asperger Syndrome. Autism ASD varies significantly in character and severity; it occurs in all ethnic and socioeconomic groups and affects every age group. Experts estimate that 1 out of every 96 children are being diagnosed with autism. Increase in Autism http://www.nutritionreview.org/library/saving.eli.html Question What is Autism? a. Autism is an overused label for a person with behavioral disorders b. Autism is synonymous with mental retardation c. Autism is a range of complex neurodevelopmental disorders Signs to Look For Lack or delay in spoken language Repetitive use of language and/or motor mannerisms (hand flapping, twirling objects, placing objects in line) Little or no eye contact Lack of interest in peer relationships Lack of spontaneous or make believe play Persistent fixation on parts of objects Autism Society of America Signs to Look For Autism Checklist http://www.myomancy.com Questions Which of the following is a behavior commonly associated with an ASD? a. Cooing and smiling b. Telling a story to another person c. Sharing toys with others d. Spinning objects A Day with Autism http://www.youtube.com/watch?v=FDMMwG7RrFQ Triad of Impairments Communication: difficulty with verbal and non – verbal communication Child may have suddenly stopped talking or unable to comprehend or speak knew words. Delayed language May only communicate through pictures or sign language Trouble with pronouns; refer to themselves by name instead of “I” or “me” Does not point to objects Triad of Impairments Communication (continued) Use language in a unusual way i.e. combine words, repeat phrases, parrot what they hear instead of initiate or respond to questions (echolalia speech) Lack of reciprocal language Do not understand tone, body language or phrases of speech Have difficulty letting other know what they want and as a result often emit an un-emotive scream Triad of Impairments Social Interaction: difficulty with verbal and nonverbal communication lead to social impairment Unable to decipher pitch and tone differentiation Unable to decipher facial expressions Restrictions with receptive and expressive language skills Inability to form a theory about what people think; take social cues in and form interpretation Triad of Impairments Social Interaction (continued) Difficulty with give and take of human interaction Difficulty generalizing Poor eye contact Poor bonding; do not seek comfort from parents; prefer to be left alone Triad of Impairments Social Interaction (cont) Difficulty interpreting what others are thinking or feeling Tendency to “loose control” when in a unfamiliar situation Self destructive behavior “Impaired hearing” or tuning people out Triad of Impairments Behavioral Flexibility: difficulty with interpersonal play and imagination (i.e. thinks in concrete images,) copied and pervasive rigidity with repetitive movements, routines and tasks. Dislike unexpected change Depend on ritualistic mannerisms, obsessional behaviors (stimming) “Stimming” is a useful barometer that can be viewed by clinicians of current anxiety levels Triad of Impairments Behavioral Flexibility (continued) Motor tics Have difficulty with new environment and change in normal routine Low frustration levels, mood swings, and over stimulation results in agitation, anxiety or inattention Question Which of the following deficit is least often associated with autism spectrum disorder? a. Communication b. Cognition c. Social d. Behavior Cognitive Processing Visual learners, not linguistic Information stored in visual “pictures” and in chunks received, not unified in past experience based on like or dislike Impaired abstraction: In ability to compose their information about the world in an orderly fashion based on like or similar concepts. Cognitive Processing Impaired abstraction (cont) Poor abstraction abilities Poor base of knowledge Cannot make sense of incoming stimuli and relate it to previous information or apply their interpretations of the world to experience Sensory Integration In addition to this triad, repetitive behavior, and resistance to change in routine are often characteristic. They may also appear hyperor hypo-sensitive to sound, touch, pain, lights, environmental stimuli. Sensory Integration Sensory Integration (continued) Difficulties with crowds and commotion Abnormal sensory inspection by mouthing and smelling toys or objects Hyper-sensitivity to touch and textures Visual perception distortion Hypotonia, fine motor deficits, and motor planning People on the Spectrum May Appear to not understand what you say Resist change or insist on sameness Be unable to speak without difficulty Engage in repetitive behaviors Repeat words or phases Appear anxious or nervous Dart away from you unexpectedly Engage in self-stimulating behavior (hand flapping or rocking) Have little or no eye contact When Approaching a person with Autism Speak slowly and use concrete terms Repeat simple questions Allow more time for responses Ask if they mind if you touch them Speak in a normal tone Remember that each individual is unique and may act differently than others Question When caring for a person with ASD one should a. Create a quiet, non- cluttered and calming environment b. Put them close to the nurse’s station and in the open as to monitor them closely c. Have multiple caregivers gather history and physical in order to obtain an accurate assessment d. Provide quick, rapid, care as any socialization causes anxiety Therapies Music Assists in fostering interpersonal contact, joint attention and understanding. Facilitates social ability Provides context and a vehicle for reciprocal interaction, repetitive, unchanging patterns, and need for sameness Provides framework for the development of learning and adaptability Therapies Pet Therapy Animals are trained to be a calming influence, provide consistency between home, school, new places and assist in transitions. Trained to prevent the children from running away or escaping (search and rescue dogs) Promotes improvement human physical, social, emotional and cognitive functioning Therapies Pet Therapy (continued) Research shows that pet therapy increases cognitive ability, self care scales, physical functioning and life satisfaction Research shows that pet therapy decreases heart rate, blood pressure, anxiety, and depression Therapies Communication Sign language Computer board Picture boards Therapies Sensory Integration If you have all these sights and sounds coming at you but you can't put them together in a meaningful way, the world can be an overwhelming place.” Sophie Molholm, Ph.D., associate professor in the Dominick P. Purpura Department of Neuroscience and of pediatrics. Therapies Sensory Integration (continued) Deep pressure Wrapping in blankets Brushing Therapies Speech therapy Assists with pronunciation Assists with reciprocal language skills Physical Therapy/Occupational Therapy Assists with fine motor skill, space concepts, and gross motor skills Therapies Diet Theory The enzymes designed to digest wheat and milk are not functioning properly, resulting in the proteins from gluten (wheat) and casein (dairy) peptides to break down into casomorphin and gliadimorphin that have an opioid effect on the brain. These peptides escape the gut, enter the bloodstream, cross the blood brain barrier causing serious neurological damage. Therapies Diet (continued) A diet free from gluten and casein has resulted in increase communication skills, increase socialization and decrease in behavioral outbursts Supplemental vitamins may also be added to the diet therapy Therapies Social Stories A written story to assist with everyday social events; what will happen and the “rules” of social behavior. For example: A birthday party. Kara is invited to Sheena's birthday party. Kara needs to bring a gift for Sheena. There will be other people there. Sometimes games are played, sometimes music is loud. There will be lots of noise. This is Sheena’s special day. The presents are for Sheena. The cake is for Sheena. Everyone is laughing because they are happy. Therapies Medication Doctors may prescribe medications for treatment of specific ASD-related symptoms, such as anxiety, depression, or obsessive-compulsive disorder. Antipsychotic medications are used to treat severe behavioral problems. Seizures can be treated with one or more anticonvulsant drugs. Medication used to treat people with attention deficit disorder can be used effectively to help decrease impulsivity and hyperactivity Question Therapies that are implemented for a person with ASD could include: a. Acupuncture b. Pet therapy c. Low cholesterol, high fiber diet d. Sensory integration therapy e. Communication adaptations f. Speech therapy g. Aroma therapy Nursing Assessment Children’s type of communication: Augmentative, sign language, picture exchange Effective social strategies and commands used by parents Behavioral mannerisms and protocol for compliance Signs of over stimulation or melt downs Problem behaviors Procedures that might trigger behaviors Nursing Assessment Regular routines Special interest/toys Therapies, special diet, medications Social interactions c Nursing Assessment Sensory Tactile defensiveness Hyper-sensitivity to smells, tastes,sounds Visual fixations Perseverations (obsessions) Successful strategies for compliance Distraction techniques Counting Favorite foods Rewards, tokens Play Songs Nursing Assessment Parents take comfort in health care provider’s empathy and understanding of the disability and challenges that parents of children with ASD face Health care providers need to be creative and have a sense of humor when caring for children with developmental disabilities. Interacting with Patients and Families with ASD Medical procedures Waiting in a hospital corridor will increase the stress level of an already anxious child or adult. If possible, find a small side room the family can wait in. Always explain what you are going to do before starting any procedure or examination. If possible, show a picture of what is going to happen or demonstrate on a parent to explain what you are doing. Interacting with Patients and Families with ASD Medical procedures (continued) Physical examinations can be stressful to the patient and it is essential that you warn them before touching them. Explain what you are doing and why Question When caring for a school age child with an ASD, it is priority to determine: a. What type of ASD the child has b. How many words the child can speak c. What words are used for toileting d. The child’s specific routines Enlist caregivers/parents help whenever possible, especially if the patient is non-verbal or uses an alternative communication method or aid. Interacting with Patients and Families with ASD Your Language Use clear, simple language with short sentences People with ASD take everything literally. Thus if you say “You have a belly bug” they will take it to mean there is a bug in their belly. Make your language concrete; avoid using irony, metaphors, and words that have double meaning, i.e. “It’s raining cats and dogs”. Give single, short direct requests. Interacting with Patients and Families with ASD Your Language (continued) Check that they understand what you have told them. Some people with ASD may speak clearly but lack full understanding. Avoid using body language, gestures, or facial expressions without verbal instruction. These may not be understood. Ask for the information that you need. A person with ASD will not volunteer vital information without being asked directly. Interacting with Patients and Families with ASD Pain People with ASD can often have a very high pain threshold. Even if the child does not appear to be in pain, they may, for example, have a broken bone. They may show an unusual response to pain that could include laughter, humming, singing, and repetitive movement (flapping of the hands or arms), repetitive phrases, or pacing Interacting with Patients and Families with ASD Pain (continued) Agitation and behavior may be the only clues that the child or adult is in pain People with ASD can be either under or over sensitive to pain so that some may feel the pain acutely and be very distressed whereas others may not appear to react at all. Interacting with Patients and Families with ASD Pain (continued) The pain scale will have to be modified as facial expressions are difficult for a person with ASD to interpret as well as sequence of numbers being more means greater pain. Suggest measurements such as “small”, “medium” or “large” amount of pain. Interacting with Patients and Families with ASD Sensory Overload If autistic patients suddenly become agitated or “zone out” consider sensory overload as the cause. Lighting causes two sensory issues: they can see and hear the cycle frequency Often individuals with an ASD easily become over stimulated by sensory overload, emergency room lights and machines that emit high pitched “whistle” sounds can be agonizing to the person with ASD. Interacting with Patients and Families with ASD Sensory Overload (continued) Some might withdraw from the stimuli, others may “stim” (make motions such as flapping hands, rocking, flicking fingers, pace) in order to stimulate sensation or to deal with the stress. This behavior is usually calming to the person, so do not try to stop it unless it is absolutely essential Interacting with Patients and Families with ASD Parents take comfort in health care provider’s empathy and understanding of the disability and challenges that parents of children with ASD face Health care providers need to be creative and have a sense of humor when caring for children with developmental disabilities. Nursing concept map therapies cognitive behaviors medications autism environment Discussion List five behaviors that are characteristic of Autism and name several interventions that can assist the child with Autism in adapting. List three different therapies utilized with a child with Autism. Discuss the theory behind the therapy, the purpose of the therapy and briefly describe what the therapy entails. Case Study A nine year old boy is admitted to the pediatric floor with vomiting and dehydration. Mother states that the child has a history of Autism. He has limited communication skills, anxiety, is a picky eater and loves Legos. He participates in Speech therapy, music therapy, sensory integration and medication management. Develop a nursing care plan that will meet this child’s medical and behavioral needs. http://www.youtube.com/watch.com/watch?v=FDMMwG7RrFQ&feature=Playlist =31C7F1C65DAD636F&playnext=1&playnext_from=PL&index=5 http://www.autismkey.com/autism_videos/wpcontent/themes/Cleaker/favicon.ico A Day with Autism Media videos Autism If the music cannot be heard, the dance will seem insane. If one does not understand the behaviors and neuro- deficits of a person with Autism, their behavior and social communication will seem insane. References Autism Society. 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