Autism: How can nurses best support families of children with autism spectrum disorder (ASD)?

1. Introduction

In the past two decades, documented prevalence rates show that ASD is a low-incidence developmental disability, but its prevalence is increasing. From an estimated prevalence of 0.5-2 per 1,000 children in 2002, rates have increased to about 1 per 68. This has made ASD one of the fastest-growing disability categories. ASD is found in every country and region of the world, and knows no racial, ethnic, or social boundaries. In the United States, it is estimated that over two million individuals have some form of autism (PDDs, Asperger’s, Rett’s Disorder, Childhood Disintegrative Disorder). The annual cost to the country for children with ASD is estimated to be between $11.5 billion – $60.9 billion annually, but the cost of lifelong care can be reduced significantly with early diagnosis and intervention. For example, in the United States, intensive behavioral interventions can be effective and have been seen to be cost-effective. Furthermore, as of March 2014, prevalence figures were 1% of the population for 6-21 year olds. In 2012, the Centers for Disease Control and Prevention (CDC) reported that 14.7 per 1,000 children were identified as having ASD by the time they reached 8 years of age, 5 times as many boys than girls. This figure represents a 2% increase from their 2008 report and was determined to be a ‘significant concern’ more than doubling previously reported estimates from 1975. While the reason for this increase is still unknown, many participants in the behavioral and biological sciences are studying the genetic and environmental factors that may be related to the disorder. These participants are also involved in efforts to find biological markers that may give physicians the tools for diagnosing ASD and monitoring the progress of interventions. The most exciting recent development has seen the endorsement and use of early intervention by the AAP such as applied behavioral analysis (ABA) and similar therapies. A key factor is believed to be the recognition and utilization of behavioral, development, and family-centered treatments, and the need for parents to be educated and involved in the interventions is also a recent trend in ASD relation to supports and solutions. Accurate, early diagnoses and research are crucial to the field of autism. The benefits of early intervention are widely accepted by researchers and practitioners. Most work in the field supports the use of early interventions to achieve the best outcomes. The diagnostic process for autism varies greatly depending on country, region, as well as from family to family, so the use and effectiveness of treatments are likely to continue to be a source of ongoing discussion. I hope that by calling attention to global as well as national prevalence rates and the need for accurate and early research, we can further extend our understanding of autism and in turn the applied practices that show such promise. The first step is to recognize and support the evidence that exists. Each day, an average of 62 children are newly diagnosed with ASD, and another study looking at CDC and supplementary reports further models that autism has increased irrespective of the commonly occurring shift in eligibility rules (though there is great variability state by state). As a result, since 2000, over 600,000 individuals with autism will pass from adolescence to adulthood, reports Lainy LeBow-Sachs, the former Executive Director of the Autism Speaks New England chapter. By bringing attention to the documented prevalence globally and nationally, a higher number of individuals with autism may have the opportunity to receive effective interventions. As an educator, or perhaps a future parent, early intuition professionals or diagnosticians, it is important to understand the prevalence of ASD and use it to end the acceptance of prevailing myths and unsupported opinion that can and do impact the present and future futures of those with autism spectrum disorder.

1.1. Definition of Autism Spectrum Disorder (ASD)

I would now like to take this opportunity to provide a concise, clear and formal definition of Autism Spectrum Disorder (ASD) and refer to some statistical facts to support it. According to the National Institute of Neurological Disorders and Stroke (NINDS), “Autism spectrum disorder (ASD) refers to a group of complex neurodevelopment disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction. The symptoms are present from early childhood and affect daily functioning.” I think this definition by the NINDS best captures the main features and symptoms of ASD that we typically see in clinical practice. Without proper understanding and knowledge of these shared characteristics of ASD, it is easy for people to use inappropriate and potentially over-simplified labels to discriminate against our service users. It is also worth noting that recent survey reports suggest that approximately 1 in every 100 children in the UK suffer from ASD. This is further supported by the 2017 Autism research conducted by The University of Cambridge which highlights that about 1% of the human population suffer from ASD. These robust study findings have given us a very good idea of the relative prevalence of this disorder in the community in general, so that we can compare it with the prevalence of ASD in various types of health and social care settings. Why is comparing these two prevalence rates important? Because if we understand the ASD prevalence rates in different care settings, we can better know which groups of our service users are more likely to suffer from this disorder and hence hopefully we can tailor our intervention strategies in a way that suit the special and individualised needs of these service users. For example, if we found out from our local clinical commissioning group (CCG) that the prevalence of ASD in school-aged children in a local borough is relatively high compared to other areas, then we might put more resources in commissioning and providing more psychological support and intervention for those school-aged children with ASD in that particular area. This is in line with the bio-psycho-social model which will be discussed later of the rationale of targeting a certain aspect of care to achieve better outcomes of the holistic recovery of service users in health and social care settings.

1.2. Prevalence of ASD in Children

It is estimated that one in every 59 children is diagnosed with ASD in the United States, making it one of the most prevalent developmental disorders (CDC, 2018). Boys are four times more likely to be diagnosed with ASD than girls. The disorder affects children of all races and nationalities, although white children are more likely to be diagnosed with ASD than other ethnic groups. ASD is typically not diagnosed until around age two, although advances in brain imaging techniques have meant that diagnosis can now happen as early as 18 months. Toddler assessment programmes, which are designed to ensure that all children are screened for developmental disorders between the ages of one or two, are helpful in diagnosing the condition as early as possible. Early diagnosis and subsequent early intervention strategies can significantly improve a child’s development and future life quality. Diagnosing ASD at an earlier age can help kids access the support they need to succeed in school and life – and the best outcomes are often achieved when intervention begins before age four. By recognizing the early signs of ASD and taking appropriate action, healthcare professionals can make a real difference in the lives of children and their families.

2. Understanding Autism Spectrum Disorder

2.1. Characteristics and Symptoms of ASD

2.2. Different Types of ASD

3. Challenges Faced by Families of Children with ASD

3.1. Emotional Impact on Families

3.2. Financial and Social Challenges

3.3. Educational and Support Services

4. Importance of Nurses in Supporting Families

4.1. Role of Nurses in ASD Care

4.2. Collaboration with Other Healthcare Professionals

5. Strategies for Nurses to Support Families

5.1. Building Trust and Establishing Rapport

5.2. Providing Emotional Support and Counseling

5.3. Educating Families about ASD

6. Enhancing Communication and Advocacy

6.1. Effective Communication Techniques

6.2. Advocating for Families’ Needs and Rights

7. Promoting Positive Parenting and Coping Strategies

7.1. Parenting Techniques for Children with ASD

7.2. Stress Management and Self-Care for Parents

8. Collaborating with Schools and Community Resources

8.1. Working with Schools to Support Children with ASD

8.2. Connecting Families with Community Support Services

9. Addressing Specific Challenges in ASD Care

9.1. Managing Challenging Behaviors

9.2. Supporting Children with Sensory Sensitivities

10. Transitioning to Adulthood and Independence

10.1. Planning for Transition Services

10.2. Supporting Families during the Transition Period

11. Cultural Considerations in ASD Care

11.1. Understanding Cultural Beliefs and Practices

11.2. Providing Culturally Sensitive Care

12. Conclusion