Caring for Autistic Children: The Role of Nurses

Introduction

The role of a nurse is to provide quality care to the patient so as to bring suffering to an end. This ensures that the patients recover with minimal discomfort and wellness of life is restored. However, nurses are always faced by many challenges like wrong diagnosis, lack of proper medical apparatus, shortage of drugs in the health institutions, lack of technology among others. Currently, these challenges have been minimized due to adoption of Evidence Based Practice in providing care for the patients (Melny& Overholt 2005, p.3). This has embraced research undertakings in the best ways to improve the practice of nursing in taking care of patients especially with long term conditions like children with autism.

Autism is a chronic neural development disorder which is non progressive. It is mainly characterized by symptoms in three major areas, which are; impaired interaction with others, impaired communication and occurrences of repetitive behavior. According to the American Psychiatric Association (2000, para.4), autism symptoms begins in childhood and can be diagnosed by the age of 3 years. This disorder affects how the brain processes information perceived from the various senses by disorganizing the connections and organizations of the nerve cells and their synapses. Autism is more common than the other two associated disorders in the autism spectrum. The other disorders associated with autism are Asperger syndrome which is characterized by impaired development of cognition and language, and pervasive development disorder not otherwise specified (PDD-NOS), which is diagnosed when the other two disorders criteria for diagnosis are not attained (Johnson and Myers 2007, p.215). Autism is believed to be linked to genetics and to be caused by one or more genes which may be acting alone or confounding one another. However, various researches are still on going to establish whether its mutations or some environmental causes like pesticides, vaccines used during childhood or even heavy metals (Rutter 2005, p.8). Finding the causative agent for autism will enlighten the scientific world on how this disorder is caused and hopefully treatment will be found or improved care for the patients will be put in place. Presently, there is no known cure for autism but proper nursing care in behavioral and cognitive interventions helps autistic children acquire social and communication skills and they are able to look after themselves.

Currently, there are many research undertakings on various aspects of autism. The Autism Research Centre (ARC) intends to understand the biomedical causes of autism so as to develop modern and competent ways of intervention and assessment. It has embarked on research on six areas affecting autism. This areas are; proteomics, hormones, screening, intervention and diagnosis, genetics, perception and cognition, and neuroscience. There is hope of finding a solution to improve the conditions of the children living with autism. According to Tsatsanis (2004, para. 1), there have been a surge of interest in the past few years in understanding the needs of the children and adolescents with autism. This has generated a lot of research which have been able to give guidelines on the treatment and best care for autistic patients. Autistic patients have for a long time suffered under the hands of care givers and guardians who don’t understand the complexities involved with caring for these patients. It is of great importance in contemporary times to understand autistic tendencies so that care can be provided accordingly and avoid these patients being kept in homes where their development is hindered. It is for this reason that this topic comes in handy to find how best a children’s nurse can offer care to these patients and minimize suffering. This essay explores the role a children’s nurse play in taking care of the patients with autism

National and international literature on the topic

According to Souders et al. (2002, para. 1-4), the professionals in the health care sector need to be ready, creative in finding new procedures and be humorous when taking care of children with ASD and other disabilities occurring during the developmental stages of life. They state that parents are the most important resource for offering important information for providing care to autistic patients. The stigma associated with autism will eventually be minimized when parents come out and give this information to the nurses. For nurses to be able to provide comprehensive nursing care to autistic children there is a need to conduct a thorough initial assessment of the child and their family before the visit to the health care facility. The assessment should involve a comprehensive discussion on the patient’s communication abilities, how well the child is able to interact freely with other children or adults at home and finally how they behave towards various stimuli in their environment like sounds and visual senses.

Pfuffer (2008, para 1-6) notes that it is important to understand the world of children with autism in order to provide quality nursing care. On first contact with a patient the nurse observes for the telltale signs for autism. Nursing care is initiated by reduction of the time that the patient spends in contact with the nurse. This reduces tension and the patient will be relaxed during the encounter. It is important for the nurse to be able to manage the senses of the patient during assessment and later follow ups. To manage sight, objects can be used or a picture so as to convey a certain message. The parents are important for those children who don’t talk since they act as their interpreters when expressing themselves with sign language. On the feeling sense, care should be taken to patiently explain to the autistic children your intentions. This reduces fear and any abnormal behaviors that may result due to misinterpretation as the child thinks you are going to harm them. Zelan observes that, loud noises can cause pain in autistic children especially those with hearing sensitivities. When a nurse is caring for the patients she should ensure that the environment is quiet and conducive for assessment. A room that is noisy will bring anticipation to the children and result in fight or flight responses therefore bringing undue sufferance to the patients. The nurse on care should ensure that the room where the autistic children frequent are free from offensive smells of perfumes, cleaning detergents or other medications that may cause the children to vomit when exposed to them. Autistic children also have heightened taste senses which should be taken care of. Caring nurses should ensure the food is well cooked to fit the patient’s desires and avoid rejection. The autistic children may also prefer consuming other non food food items like dirt or sand. This condition affects about 30% of autistic children and thus they should be monitored closely to avoid harming themselves (Adams 2004, para. 1-6).

The nurses have a professional role to control the behaviors of autistic children during their care. Autistic children with sensory dysfunction when stimulated often relief themselves by behaviors like twisting hands, making funny noises flapping of arms or performing some abnormal movements (Miller 2006, p.10). This condition is commonly referred to as ‘stimming’. There arises safety issues due to poor posture and balance, and the child may fall frequently. In this situation the role of the nurse is assessment of the child’s environment and removing or controlling the negative stimuli causing these reactions. Autistic children have a difficulty of adopting a change of behavior since they are deeply attached to some activities some of which are detrimental to their care. The nurse plays a role in ensuring that the patient is well aware of what is happening or when any activity is being initiated. The nurse assures the patient of their parent’s presence and providing proper understanding by use of pictorial presentation of this information. Another difficulty encountered by autistic patients is learning the proper use of toilets during their early childhood. According to Wheeler (2004, p. 10), it is not a wonder to see children beyond the age of toddlerhood still on diapers or undergoing toilet trainings. The nurse should try as much as possible to emulate the same procedures as those followed by the parents at home. This helps to avoid regression by the patients.

At the 21st century more research is being undertaken to improve on the existing knowledge on the care of patients with autism. Bellando (2009, p.216), have studied the role a student nurse plays for the treatment of students with ASD. They point out that the school nurses are important in development of programming for students with ASD through early identification and guidance on the preferred procedures to be carried out. They guide in development of health plans for each patient outlining the health needs required for proper care. Younger autistic students usually have problems sleeping and time for sleeping can pose them with lots of difficulty. The school nurse helps the teacher find a cool and quiet place which often makes sleep time smoother. According to Aman (2003, p.528), students with ASD are often at times put on medication and the most common includes antidepressants (21.6%), antipsychotics (14.9%), antihypertensives (12.5%), and stimulants (11.3%). The school nurse plays a role of informing to raise awareness about the side effects of such drugs like weight gain or loss, irritability, stomach aches, hyper-vigilance among others which are well known. To assess such side effects, the nurse monitors certain health parameters like taking the patient’s blood pressure at school. This procedures help minimize the students’ suffering due to autism and the students are able to concentrate with their studies and leave a normal life just like the rest of the children of the same age. The autistic students have difficulty taking any oral medication and this has been reported by 62% of parents with autistic tendencies (Williams 2000, p.260). School nurses have a role to play in making the necessary adjustments like applying behavioral rewards to soothe the patients or even trying to crush the tablets to decrease rejections. The nurses help in implementation of the treatments that have been proven to be effective. These treatments involve the educational methods which target to increase the academic, self care, adaptive and communication skills, and the developmental therapies such as speech, occupational, physical therapy and social skills which have been shown to benefit autistic students clinically (Myers 2007, p.1170). It is important to note that caring for the autistic students should not be left on the school nurses alone, but a collaborative effort should be encouraged from the teachers, parents and the physicians.

Nurses communication roles with a child with autism

Communication is the process of passing information between the speaker (the information source) and the listener. Several processes are used for effective communication. These are; gestures, speech and language. As the children grow, communication develops together with cognition. Although composed of different mental functions, cognition and communication are co-independent but in autistic children one may be impaired while the other one is not. According to American Speech-language-Hearing Association (ASHA) (2006, p.52), communication delays and disorders in schools includes, “any atypical comprehension or production of speech sounds, words, phrases or sentences.” Children with this condition exhibits omission of some speech words or they may produce some combinations of speech sounds which are unusual and unintelligible. Autistic children who demonstrate high aggressive behaviors like kicking and shouting may be as a result of frustration as a result of communication delays or associated disorders (Scheffler 2007, p.2). Communication delays or disorders without cognitive impairment are displayed in two groups of autistic children. The first group is the ‘late talkers’ (Weismer 1994, p. 40) and the second group is the children with Specific Language Impairment (SLE) (Leonard 1998, p.12). Late talkers understand spoken language better than those with SLE. Those with SLE exhibits difficulties with the language skills throughout their school life and they experience learning and reading disabilities as they grow up to adulthood (Weismer 1994). These groups of autistic children both require speech and language therapy to help them with their weaknesses. Language and cognitive disorders may also occur as a result of lack of social interactions. According to ASHA (2003, p.9), these conditions include those autistic children who are living in poverty or in a residence where there is drug or alcohol abuse by the parents.

At times, health professionals lack the required knowledge and skills that are necessary for taking care of patients with autistic tendencies. However, this situation has been improved due to development of educational materials that are readily available for use by the nursing fraternity during training and also practice. As a result of behavioral and communication difficulties facing autistic children the nurses have worked tirelessly to improve on understanding the patients for effective medical intervention. The nurse’s role in caring for autistic children involves listening attentively to the patients and the parents while assessing the best care to be provided, comforting the patients through proper care and their parents by offering honest advice about the autistic conditions and ways to improve the situation. The autistic patients are known to exhibit aggressive tendencies thus it’s the duty of the nurse to be sensitive while handling them and have patience as it may take time to calm the patients. Finally the nurse should try at all times to call the patient by their names as this has been shown to reduce tension in the patient and encourage compliance with the caring procedures. According to Watson’s theory (Watson 2003, p.6), the ultimate goal of nursing is centered on helping the patient gain a higher degree of harmony within their mind, body and their soul. This theory can be applied in caring for autistic patients in hospital settings, school or during home care.

State of children’s nurses in caring for children

A study carried out in Lithuana indicated that children’s nurses encountered a lot of difficulties in establishing good contact with autistic children and their parents. It also showed that there was little knowledge about children with pervasive development disorders (PDD) and their caring needs (Lesinskiene 2002, para.1) However, there have been great advancement in the nursing profession and a lot of knowledge and skills are acquired at different schools of nursing all over the world. The course work for the various majors has been adjusted to meet the needs of different patients at the modern times with autism being one of them. According to Sunandar (2008, para. 2), the nurses role when dealing with patients with autism includes the following; identifying the routine the child follows, their habits, and preferences and maintaining consistency with them. The nurse identifies the specific ways the children communicate and encourage use of pictures and symbols to enhance understanding. The nurse also provides a safe environment for the children and reduces their anxiety and stress. Finally they initiate referrals whenever situation demands and support the child’s parent in any way possible.

The modern day nurses are able to perform those roles competently due to the thorough training they undergo. However, increased research is called for in betterment of the care provided. The nursing profession is being called to have continuous professional education so as to specialize in the various fields concerning nursing care. When this is done patient suffering will be reduced and this will works towards following in the footsteps of the mother of our profession, Florence Nightingale.

Nursing care in hospitals

At the hospital the autistic children receive specialized care to n form of medication, PECs and Applied Behavior Analysis (ABA). The medication received includes antidepressants, antipsychotics, selective serotonin uptake inhibitors (SSRIs), anxiolytics/sedatives, stimulants, alpha2-agonists, or beta blockers. This drug therapy controls symptoms like aggression, infliction of injuries on themselves and severe tantrums (Hilt 2006, para.2-6). However, these medications have not received approval from Food and Drug Administration (FDA) for autistic patients or children. Most of the times a combination of two or more medications are used. Grandin (2006, p.20) notes that, “some parents believe that a regimen of vitamin B6 and magnesium are beneficial in improving communication, eye contact and having fewer tantrums in their children.” The patient may arrive at the hospital on emergency where full assessment may not be carried out. When this is the case, lorazepam (Ativan) or chlorpromazine (Thorazine) will be the drugs of choice. In case haloperidol (Haldol) is administered, the dosage administered is regulated and recommended together with diphenhydramine (Benadryl) or benztropine (Cogentin) to minimize the chances of extra pyramidal reactions.

The second treatment approach for children with autism is Applied Behavioral Analysis (ABA). It is the science of application of principles derived from experiments on behaviorism to modify behavior. It involves nurses using what they know about a certain behavior and trying to bring a positive change on the behavior on the patients with autism. It is based on the assumption that a child will repeat behaviors that are positively reinforced and will not repeat those that are done with. Basic education skills, correct behaviors and social interaction can be learnt through this process.

The third and final method used is the use of Picture Exchange Communication System (PECS). According to Hincha (2008, para. 1), PECs is the method by which individuals communicate through the use of pictures or graphic symbols. It has been applied worldwide on both the children and adults experiencing communication problems due to autism spectrum disorders. This form of therapy has many advantages over the others and includes the following; PECS message exchange is clearly intentional and thus readily understood b the autistic children, since communication is initiated by the child, they are encouraged to seek partners to speak with in ordinary settings. Communication is made meaningful and highly motivational and finally the materials for PECS are cheap and readily available.

Conclusion

Autism is a childhood disease occurring before the age of three years. It is a neurological disorder that interrupts communication between various neurons and their adjoining synapses. It is characterized by three conditions which are; impaired interaction with others, impaired communication and occurrences of a repetitive behavior. Latest research have shown that this disease is passed on in genes. The other disorders associated with autism are Asperger syndrome which is characterized by impaired development of cognition and language, and pervasive development disorder not otherwise specified (PDD-NOS), which is diagnosed when the other two disorders criteria for diagnosis are not attained (Johnson & Myers 2007) This is a field that has received much interest from various scholars in finding ways to better care for autistic children. However, various researches are still on going to establish whether its mutations or some environmental causes like pesticides, vaccines used during childhood or even heavy metals Unlike other diseases, autism was stigmatized and children developing this condition had much difficulty accessing care leading to suffering either locked at their homes or in rehabilitation homes. However this trend has changed lately due to improved care among the nurses for the autistic children. Development of research on this topic has enabled a change in the course of nursing leading to incorporation of caring procedures for autistic children. It is good practice to involve parents and guardians in every aspect of the child’s care. The caring of autistic children should involve all players in the health sector the services of occupational therapists, intervention therapists, consults in psychiatry among others should be sought (Weismer)

The nurses have a duty to play in improving communication between the patients and health care givers. The nurse understands the behavioral characteristics of patients with autism thus is able to advise their parents accordingly and provide efficient care to autistic patients thus minimizing suffering. At the hospital autistic patients receives various drugs like antidepressants and antipsychotics selective serotonin uptake inhibitors (SSRIs), anxiolytics/sedatives, stimulants, alpha2-agonists, or beta blockers which helps to control the aggressive behavior that they may exhibit. The second treatment is use of ABA which is based on the assumption that any behavior awarded is encouraged thus is used for teaching these children many behaviors. The final is the application of the PECS which is the use of pictorial representations to pass across a message. It has many advantages over the others and this includes the following PECS message exchange is intentional and thus readily understood by the autistic children, since communication is initiated by the child, they are encouraged to seek partners to speak with in ordinary settings and communication is made meaningful and highly motivational and finally the materials for PECS are cheap and readily available. The nurses have a duty in ensuring that the patients are well taken care of. They should be encouraged to undergo various trainings when time entails so as to acquire skills and knowledge of handling various up coming conditions which affect children. The modern worlds have embraced the use of technology in their duties and the nursing profession should not be left behind. A culture of caring should be cultivated to ensure efficient nursing practices all the time. Good nursing involves ending patients’ suffering and this should be every nurse’s craving.

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