Communication Barriers in Provisional Care for Children and Young Adults with Autism Spectrum Disorder

This paper examines and addresses the difficulties that nurses face when dealing with children and adults with an autism spectrum disorder. It aims to draw attention to the communication barriers and the systemic lack of understanding when interacting with children and adults with Autism Spectrum Disorder experience, particularly in hospital settings. I will also discuss a brief history of autism. Then I will discuss how communication affects the quality of care given to children and adults with Autism Spectrum Disorder, the communication barriers nurses and how nurses can help to reduce the barriers and the approaches to communication with children and adults with ASD. I will also discuss the social and medical model of disability and how it relates to autism and, lastly, the conclusion that nurses need additional training or courses to reduce communication barriers and lack of understanding when providing care for children and adults with ASD. Communication with an individual with autism is essential to provide high-quality nursing care because. To provide high-quality nursing care to children and adults with ASD, nurses need to understand how communication typically develops and how it differs in children and adults with ASD to improve the communication process and provide care.

Individuals with autism spectrum disorder rely heavily on the services provided by nurses and other healthcare teams (e.g. doctors, respiratory therapists, etc), especially those in primary care facilities, such as hospitals. Although all nurses are required to care for people with Autism

Spectrum Disorder. Autism Spectrum Disorder, some may have inappropriate attitudes or lack the knowledge and communication skills to respond to their needs.

  The number of children and young adults on the autistic spectrum is growing. In the recent report of the Center for Disease and Control and Prevention, about 1 in 59 children were identified with ASD (CDC 2019). Meanwhile, in Canada, the National Autism Spectrum Disorder Surveillance System (NASS), the prevalence rate as of March 2018 is 1 in 66 Canadian children ages 5-17 are diagnosed with ASD. People with ASD have been evaluated to have more unmet healthcare needs than any other special-needs population. These health inequities are mainly related to socialization and communication barriers. As nurses are the frontline caregivers in health­care, nurses must be prepared to address these issues across all settings throughout the lifespan. As ASD prevalence rates rise, it becomes imperative for nurses in any setting, primary or acute care hospital settings, to understand the unique challenges of this population.

           Many nurses seem to lack the knowledge and skills required to understand and communicate with a child or adult with an autistic spectrum disorder. Individuals who have autism spectrum disorder rely heavily on the services provided by nurses and other healthcare teams (i.e. doctors, respiratory therapists), especially in the hospital setting. Although all nurses will care for people with Autism Spectrum Disorder, some may have inappropriate attitudes or the lack of knowledge and communication skills to respond to their specific needs.

Understanding Autism

Autism Spectrum Disorder (ASD), also known as Autism, is a condition in which children have difficulty with communication and social skills, and they experience behaviour issues.  The term “spectrum” in autism refers to the wide range of variations of problems that a person with autism possesses (Henderson et al., 2011).  Before 1943, Autism was classified as a mental disorder that was associated with schizophrenia. According to the American Psychological Association, the term was first formulated by Swiss psychiatrist Paul Eugen Bleuler in 1912. (The root of the word autism is from the Greek “autos,” which means “self” (as cited in Autism Epicenter n.d).  However, in 1943, American child psychiatrist Leo Kanner first labelled and described the condition. He observed children and noted they shared similarities when it comes to difficulties in social interactions, adjusting to changes in routines and schedules, sensitivity to stimuli (especially sound and textures), resistance and allergies to food, incredibly intellectual potential, echolalia or a tendency to repeat the words of the person speaking in a continuous activity.

How does communication affect the quality of care given to children and adults with ASD?

Children with Autism Spectrum Disorder are often self-regarding and appear to occupy their own space in which they have limited ability to communicate and interact with others successfully. Children and adults with Autism Spectrum Disorder may have a hard time developing language skills and understanding what others say to them. They also often have difficulties with nonverbal communication, such as through eye contact, facial expressions and hand gestures.

The proficiency of children and adults with Autism Spectrum Disorder to communicate and use language depends on their social and cognitive development. Some children and adults with Autism Spectrum Disorder may not be able to communicate using speech or language, and some may have minimal speaking skills. Others may speak more verbally and be able to speak specifically about a subject. Many have difficulties with the meaning and rhythm or articulation of words and sentences. They also have difficulties in understanding body language and different vocal tones.  Individuals with Autism Spectrum Disorder may also have difficulty processing information (what they hear and see), and might not grasp what is being said to them or see at that moment. These difficulties affect the ability of children and adults with Autism Spectrum Disorder to interact with others, especially people their age.

Communication development happens differently and slowly in children and adults with Autism Spectrum Disorder. Because of the sensory challenges associated with the disorder, children and adults with autism might seem more interested in environmental sounds, also known as white sounds. Other examples include the whirring of a fan or the sound of the rain, as opposed to the sound of people talking or the sound of fireworks. They may seem unfocused, distracted, or they might not appear to realize someone is talking to them.

No one knows the reason precisely why, but children and adults with Autism Spectrum Disorder do not naturally imitate in the same way that other children and adults do. They either do not imitate at all, or they imitate whole sentences (called echoes) without always understanding the meaning of the things they are saying.  On the other hand, children and adults who do not use echoes, first words are often delayed and are sometimes unusual, like numbers or letters of the alphabet. Because of the barriers mentioned above, a nurse’s level of understanding of autism and how to communicate with them can primarily impact the outcome of care given.

Communication Barriers with the nurses

         Since effective communication is vital to providing quality care, it is quite challenging for nurses to communicate with children and adults in the spectrum, as not every child and adult on the spectrum have difficulties in communication. Some children and adults might have the ability to speak, and some might not have the ability to speak and express themselves. These barriers can lead to ineffective communication with an individual with an autism spectrum disorder, and this ineffective communication might lead to an inability or failure to adequately address healthcare needs.

Conclusively, there is a high percentage of guesswork involved when it comes to how nurses approach patients with Autism Spectrum Disorder. This should compel educators and instructors to provide nurses with a better way to understand language development and communication in the ASD population (Will D. et al. 2013).

Nurses should always seek help in care collaborations with patients and caregivers. However, this may be challenging when doubts in social communication prevent a clear understanding of defined goals and guidelines for providing care. Patients with Autism Spectrum Disorder who struggle with social and verbal communication may find that requesting special accommodations can be difficult; in this case, the use of individualized strategies are necessary to address limitations that create barriers to healthcare.

Individuals with Autism Spectrum Disorder interpret the world differently, which may interrupt communication challenges. The burden is on the nurses to understand them and aid them in making sense of a “normal” world.

 How can nurses help?

The most significant role of a nurse in autism is education. Registered nurses, registered practical nurses, and nursing students should be educated on several aspects of autistic spectrum disorders. Essential areas of education include approaches to communication, symptoms, treatment options, expected and probable outcomes, and available support resources. Implementation of additional training or courses should be mandatory for nurses and nursing students.

According to the College of Nurses of Ontario (CNO) 2018,  they are committed to providing individuals with disabilities with the same opportunities to access their goods and services, as similar way as the other members of our society have access to the goods and services that CNO provides.

Hence, the role of the nurse is critical for a positive outcome. The expectations of a nurse in the care of children with autism are to be accessible, available and knowledgeable.

Approaches to Communication with a Child and Adult with Autism Spectrum Disorder

Communication is one of the main issues with children and adults with an autism spectrum disorder. It is essential to identify that there are a variety of communication impairments on the spectrum of autism. Hence individual care plan is needed as every individual on the spectrum is different.

Developing an effective system of communication with a child with autism can be one of the biggest challenges for nurses. There are a variety of augmentative and alternative communication systems developed for children with ASD, including the use of sign language or symbol/picture systems to convey thoughts. These systems range from rudimentary picture boards to more sophisticated electronic computer-based devices (Preston & Carter, 2009; Yoder & Stone, 2006). Also, communicating with clear, direct and straightforward sentences may assist the nurses in communicating with child and adult Autism Spectrum Disorder(CITE). It is also vital to use positive reinforcement when communicating with children and adults with Autism Spectrum Disorder. For example: offering a child a stuffed toy for telling the nurse which part of his or her body is painful is a positive reinforcer.

Social and Medical Model of Disability

There are several ‘models’ of disability which have been identified over the last few years. The two main models are the ‘social’ and the ‘medical’ models of disability.

The medical model of disability is the dominant model in autism. The historical background here is that autism, relates to a series of medical diagnoses beginning with ‘infantile autism’  according to 1979,  the ninth revision of the World Health Organization’s International Classification of Diseases (ICD-9) published in 1979, and a year later in the third edition of the American Psychiatric Association’s Diagnostic and Statistical Manual (DSM-III), has been seen through the lens of the medical model of disability. The medical model of disability sees the individual’s disability as something wrong or not right and needs medical intervention. Because of its focus upon individuals, the medical model led to stereotyping and defining people by a condition or their limitations (Shakespeare, 2010).  Society views the medical model of disability as being disabled, impaired, different, and that a medical doctor should address their needs and provide treatment to “fix” the disability (even if their disability is not necessarily causing any problems) (Oliver 2013). The main criticism of the medical model of disability is that it equates disability solely with impairment, ignoring the involvement of social, cultural and environmental factors in the construction of disability. 

The social model of disability refers to how society neither sees nor defines disability, not that the person’s impairment or difference (Oliver, 2013). When society uses the word disabled, we are identifying disability as a natural part of human diversity without negative connotations. 

How we see or view and think about people with a disability is vital in determining how we care for them.  Mike Oliver (2013) stated that “he sees it as nothing more than a tool to improve people’s lives.”  The social model intends to shift the focus away from physical impairments and towards the social responses to impairment. Reducing social hindrances, rather than attempting to reduce the impairment itself, is often a far more effective approach in improving the lives of individuals with disabilities.                   

In the social model aspect, we focus on reducing or removing the barriers people with disabilities face. Treatment is not about “fixing” people – it is about working with them to help them achieve their goals, aspirations and full potential. It recognizes individuals with disabilities as full, valued and included members of our society with the same rights and responsibilities as everyone else. An excellent example of the social model is spreading public awareness about autism, and it helps society to understand what autism is and promoting acceptance and inclusion to everyone on the spectrum.  For these reasons, the social model is now the model of choice. Because recognizing the ability of children and adults on the spectrum, rather than focusing on their disability, it is essential to create a society that is truly accepting and inclusive.

 Conclusion

This paper is a starting point in reducing the communication barriers in caring for patients with Autism Spectrum Disorder. With the growing number of individuals who are diagnosed with autism and the likelihood of nurses caring for children and adults with Autism Spectrum Disorder, nurse’s roles are essential in the management of the care of children and adults with autism.

Nurses need to be prepared to provide safe, developmentally appropriate care. Providing nurses with additional training and courses, focused resources and support, and consistent care will ensure a safe environment for both patients and nurses, and it can also enable them to deliver the appropriate care required. It takes specialized knowledge and skills to be adequate in communicating effectively with children and adults with autism. It requires a lot of understanding, empathy, patience, tolerance and, above all, total commitment to achieve the optimum level of care needed.

  Also, planning and collaborative care with a multidisciplinary team are essential to providing resources, treatment, and follow-up. Initiating the development of a multidisciplinary group that is accountable for keeping up to date with advances in Autism Spectrum Disorder research and disseminating that information to the staff is also paramount. Ultimately, the best plan of care will be one that is formulated with the patient and their family, and it will consider the unique experience of the spectrum of Autism Spectrum Disorder. By increasing the nurse’s knowledge of Autism Spectrum Disorder, nurses can deliver effective and appropriate care, resulting in personal and patient-centered care.

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