Care of the Patient with Autism – CPD: Practice Effectively
The purpose of this activity is to enable the learner to identify and aid in the management of patients with autism.
After completing this course, the learner will be able to:
- Describe the characteristics of Autism
- Identify the causes and prevalence of Autism
- Describe interventions to implement with a patient diagnosed with Autism
- Identify what to report to the nurse
What is Autism?
Autism is defined as a brain disorder that impairs the ability to communicate, form relationships, and respond to the environment (American Psychiatric Association, 2015). It was assumed that autism was rare through the 1960s until researchers began to look closer at those who suffered from these problems. While some people with autism are very high functioning, others can have serious delays in language and development. An adult or child with autism can seem distant or unapproachable. Although symptoms can be different for each person with autism, the symptoms fall into categories of social and environmental interaction, communication, and behavior (American Psychiatric Association, 2015).
Dr. Leo Kanner of Johns Hopkins University described autism in 1943. He studied 11 children who had characteristics of social isolation, language abnormalities, and unusual responses to the world around them (Baron-Cohen, 2015). Dr. Kanner used the term autism from the Greek word autos, meaning self, to describe the behaviors of the children he studied. They seemed to be absorbed within themselves (Kanner, 1943). He noted that these children could talk but did not use their language to communicate with others (Baron-Cohen, 2015). One belief was that the mothers of the children caused the behaviors by being distant. These mothers were termed refrigerator mothers (Kanner, 1943; Douglas, 2014). That idea was dispelled years later when research found abnormalities in the brain (Rimland, 1964). Kanner, however, only used the term autism with children and did not further his investigation to teenagers or adults. Research into adults with Autism did not begin until the late 1960’s (Henninger & Taylor, 2013). It is now known that Autism is a life long disorder that impacts all age groups.
Autism is usually diagnosed in children by the age of 3 but can be diagnosed earlier if symptoms are present (National Institute of Mental Health, 2015). Parents usually notice that their baby does not cry or does not seem to want any attention. They may also report that their young child is different. The parent may report that the child seems distant, acts as if they are in their own world, or is obsessed with one particular item (Lord, Cook, Leventhal, & Amaral, 2013). The young child may be unusually withdrawn when in the company of others or seem not to understand social cures as a normal child would (American Psychiatric Association, 2013). There is a range of severity of symptoms that will dictate interventions.
The characteristics that Kanner described are still considered current characteristics to diagnose autism today. Scientific evidence and research show, however, that there is a genetic basis for autism. Autism tends to occur in people who have a specific genetic chromosomal condition. Approximately 10% of children with autism also have downs syndrome, fragile X syndrome, or another genetic or chromosomal disorders (CDC, 2014). Autism affects more boys than girls (Developmental D.M.N.S.Y., 2014). However, girls with autism tend to have more severe symptoms. Almost half of all children identified with autism have average to above average intellectual abilities (Developmental D.M.N.S.Y., 2014). They all have problems with communication, social interaction, and behaviors. The disorder does not discriminate for class, nationalities, or race. Furthermore, the prevalence of autism has risen over the last several years (CDC, 2014). More than 3.5 million Americans live with autism and approximately one in every 68 births will produce a child with autism (Buescher, Cidav, & Knapp, 2014).
Therefore, it is important for healthcare practitioners to be aware of the roles they play in the lives of the person with autism. Also, the healthcare provider needs to have a good understanding of symptoms they may see in an autistic person and how to help the person achieve quality of life and appropriate socialization.
SYMPTOMS OF AUTISM
Parents might see that their baby does not cuddle well or stiffen when they are held. Infants tend to have poor eye contact, may not respond to facial expressions or surrounding people (Lord, Cook, Leventhal, & Amaral, 2013). The baby may be quite happy to sit alone in the crib for long periods of time looking at their toys. As the child grows older, they may not be able to understand facial expressions or body movements as a means of communication. They may not respond to their name being called or may seem deaf (Lord, Cook, Leventhal, & Amaral, 2013). The child may not respond to hugs or smiles. They are not able to interpret gestures or facial expression like other children (Early Signs and Symptoms, 2015). Therefore, they do not know how to respond. The young child typically will not find friends easily and will not associate with groups of other children (Early Signs and Symptoms, 2015). For example, it might not occur to them to share the toy or something that they created with others.
Development of language tends to be delayed, or the child may not speak at all (Autism, 2015). Children may also begin to develop language and then backtrack in language development (American Psychiatric Association, 2013). The language may be repetitive or lack meaning. They have difficulty initiating and maintaining conversation, or they may repeat whatever they last heard (American Psychiatric Association, 2013). They may act as if they are in their own world and not aware of what is going on around them. They may also injure others or themselves without provocation. They may show no pain and or no sensitivity to getting hurt (American Psychiatric Association, 2013). These are all observations to take into account when working with the patient.
Adults may find social interactions, especially in groups, uncomfortable or confusing. They may not understand or know how to respond to others appropriately. For example, they may not get the joke or the reason others are laughing. They may not understand the reason someone is sad and they are not able to respond appropriately. They may also lack eye contact and seem very meticulous and precise in everything they do (American Psychiatric Association, 2013).
The parent may also see repetitive behaviors such as doing the same activity the same way each time. An example is opening and closing doors, or moving a toy in exactly the same manner each time. The activity has steps that the autistic persons must do in an exact order every time (Autism, 2015). The child may also become preoccupied with specific objects or parts of objects such as the wheel of a toy car or the hand of a doll. Obsessions with objects might also be an issue for the patient (Autism, 2015). An example might be that the child is obsessed with rings. They may grab or stare at a stranger’s ring. However, obsessions can be unhealthy as well. For example, the child may be obsessed with trucks and walk into the road to get a better look at passing vehicles. These activities are much more intense than in a normal child (American Psychiatric Association, 2013). Stopping an activity can become extremely upsetting for the child. However, if it is dangerous, a different outlet might need to be found.
The parent may also see stereotypical activities such as toe walking or hand flapping (Autism, 2015). This may be a way for the child to relieve stress of an event. The child may also not point out objects or engage other people in what they might see or do. Parents often report a lack of play (Gunichat et al., 2012). Children may also be highly sensitive to some stimuli and under-sensitive to other stimuli. For example, the child may over react to a touch but lack reaction to meeting new people.
Adults may also have hobbies, or specific interests that take up much of their time. This intense interest is seen as a hallmark of adult autism (American Psychiatric Association,2013). The adult is hyper-focused on one particular area. They may worry about change or become angry when their environment changes. They may need a specific routine to feel comfortable. The adult may also have unusually high sensitivities to, smells, taste or feel (American Psychiatric Association, 2013). Like the child, they may repeat words or phrases or other repeat behaviors in an attempt to relieve the stress of a situation.
Adults, however, may have coping mechanisms in place to help them hide their discomfort over interactions or situation. This can make it difficult to understand their reactions which may get interpreted as aloofness or arrogance. Almost all children and adults diagnosed with autism have a form of anxiety which needs to be taken into consideration when caring for this person (Lohr, 2014). Anxiety may also account for some of the behaviors. It is important to assess for anxiety along with any changes or increase in behaviors.
Remember that Autism is diagnosed on a broad spectrum form severe to mild for both communication/interaction and behaviors. The severity of the symptoms will dictate interventions.
Interventions for The Patient with Autism
Remember that autistic children and adults do not understand others thoughts, beliefs, or emotions. They do not understand social cues and cannot interpret facial expressions or other nonverbal forms of communication. Interventions help these patients adapt to daily activities and learn how to respond to others.
Approaches to working with a child or an adult with Autism focuses on helping to develop appropriate behaviors and create stimulating environments (Autism, 2015). Several interventions can be used to reduce their limitations. For example, setting up a schedule, teaching in a series of simple steps, engaging in activities that are highly structured, and provide regular reinforcement for behavior. A schedule may include what time to wake up, brush their teeth and eat breakfast. Developing appropriate behaviors may be modeling how to share a toy or answer a telephone call. Creating an environment that is safe and stimulating may be setting up a table with paper and colored pencils for drawing or setting up a favorite train set to play with.
Effective methods of communication include using observational skills to understand signals that the patient is in need of something or is expressing a like or dislike of a situation (Lee, Walter, & Cleary, 2012). For example, what is the person or child’s reaction toward a person, a word, or a picture? Does the patient become withdrawn? Withdrawal may suggest that they are upset or do not like the situation. Likewise, if they become overly excited, they may run around in circles or flap their hands. Observation is a key element in understanding the autistic patient.
Visual objects used for communication can work very well with these individuals since they tend to think and learn visually, images will hold their attention longer. Research shows that individuals with autism see pictures rather than words (Schreibman & Stahmer, 2014). Using picture cards showing emotions or objects that they may want will help them learn to communicate. Keeping directions simple when communicating with this individual can also help them in understanding what needs to be done and can decrease anxiety (Lee, Walter, & Clearly, 2012). For example, use short, simple phrases and avoid abstract terms and metaphors. Autistic patients take communication literally. If asked what level of pain they are in, using a scale of one to ten, the patient may not understand how to rate pain. However, using the faces pain scale may allow the patient to communicate if they are in pain.
An adult may communicate better in writing than in speech (Nicolaidis et al., 2015). Offering a note book and a pen may help them to communicate. If they react oddly or appear distressed, you may have to rephrase the request or statement. It is also important to work closely with the parent of a child or the caregiver of an adult to help manage and recognize situations that may arise. Be open to alternative methods of communication.
Behavior is typically a response to the environment (Swiezy, 2016). Behavioral therapy focuses on changing or modifying specific behaviors such as self-injury, tantrums, repetitive behaviors, or aggressiveness. This can include training in each step of an activity or verbal skill that is a positive experience (CDC, 2015). Some examples might include substituting one behavior for another more positive behavior such as providing an outlet for anger, like playing the drums, instead of turning to aggression or self-destructive behaviors. Since communication is difficult, behavior is sometimes how the child or adult with Autism communicates. Recognizing what is happening around the person can help to stop the unwanted behaviors. Asking questions, for example, does the person need or want something or is the inappropriate behavior the result of frustration, can help to prevent negative behaviors. Creating a safe environment is also important for the individual (Lee, Walter, & Cleary, 2012). Make sure there are no objects the person can get hurt on if they become aggressive or excited over a situation. It is important to follow any directions or suggestions the therapists may use with the patient. Remember structure and consistency are best for the Autistic person.
Being aware of the environment and the message the child or adult is trying to communicate can be challenging. However, it is important to remember that the behavior means something or is a response to the environment or what is being asked of them. Be sure your directions are clear and simple. Give one step at a time and allow them time to complete each step (Swiezy, 2016). They may have several therapists involved in their care such as a speech therapist to teach vocabulary, a physical therapist if they have difficulty with walking or moving around, a therapist to help with behaviors or an occupational therapist to help with day to day activities.
Other forms of therapy might also include social skills including how to navigate day-to-day activities with others. Social stories are a form of therapy that teaches particular skills using stories, pictures, or scripts to help the child or adult follow direction when interacting with others. Continued research into therapies also incorporate videos, software, or virtual reality programs to teach recognition of facial expressions and how to respond to others (Ke et al., 2015). There may be a need for the caregiver to help in teaching these activities.
What to report
The autistic patient may be on medication or have additional medical issues. Be aware of problems with medication side effects such as diarrhea, nausea, headache, or other side effects. Remember that this patient may not be able to state exactly what is hurting or what is wrong. Assess for sleep patterns, bathroom patterns, eating habits, the ability to complete activities of daily living, and any changes in their patterns or behaviors. Any changes should be reported. The parent or care giver may be the best person to ask about any problems that are occurring. If working with an adult, use some of the techniques mentioned such as allowing them write down symptoms or use pictures for communication.
Be sure to report any new issues such as being aggressive toward a particular person or acting out at certain times of the day. Determine their anxiety level during activities or new interactions. Notice if there are any changes in their environment. If there are, discuss with the nurse and other caregivers how to help the patient adjust to anything new that may occur.
Jerrod is a 10 –year- old who has been diagnosed with Autism. You are Jerrod’s home care nurse. Upon arrival, you notice that Jerrod is withdrawn and will not address you. His mother tells you he is not sleeping more than two hours. As you approach Jerrod, he suddenly starts flapping his hands and yelling. His mother is upset and wants you to help him. What do you need to report to the nurse?
You would report that Jerrod is not sleeping well and more withdrawn. There may be strategies the nurse can share with you to help Jerrod and his mother. This may include reviewing his schedule, particularly around bedtime, or asking if there is anything new around the environment.
Mary is a 23-year-old who works as a paralegal in a respectable law firm. Mary goes to work everyday but she does not associate with anyone. Recently, a new secretary was hired at the office. As you visit Mary, she is able to communicate that a new person is working with her. She does not tell you she is anxious or upset about it. However, you notice that she wrings her hands and looks around the room. Her face appears worried. How do you approach asking her if she feels anxious?
You can use pictures to see how anxious Mary is or show faces of various emotions to see if she can point out how she feels. You will also discuss this with the nurse and develop interventions to help Mary overcome her anxiety.
Working with an Autistic child or adult can be challenging. However, remembering that someone with Autism tends to see parts of the big picture and not the big picture is helpful when determining how to communicate with them. Understanding that this person focuses on details and on visual communication can also be helpful. Setting up schedules and using pictures to give direction and information are examples of how to work with a person who has Autism. Remembering that the Autistic individual is intelligent but does not understand how to respond to the emotions or reactions of others can go a long way in providing care and helping the individual lead a productive life.