Assessing and Managing Pain in Children with Autism Spectrum Disorder and Learning Disabilities: A Literature Review

Introduction

Autistic Spectrum Disorders (ASD) or Autism or Autistic Spectrum refers to a group of psychological conditions that have the ability to impair the communication and social interactions of the people suffering from it, often resulting in highly repetitive and severely restrictive behavior (Lord, et al., Nov 2000). The Medical Research Council (MRC) report in 2001 reported that 60 children among 10,000 children below the age of 8 years suffered from autism (MRC Review of Autism Research: Epidemiology and Causes, Medical Research Council, 2001). The Office of National Statistics in 2005 also reported a growing concern of the prevalence rate of the autism among the school-age population in the UK. According to the report, the school-age population in the UK showed a prevalence rate of 0.9% autism, thereby directing the focus on increasing the research around ASD in order to make headway into the identification and treatment of the disorder and care for the autistic children and young adults (Mental Health of Children and Young People in Great Britain, Office of National Statistics, 2005). Shore pointed out that the growing awareness of the disorder is due to the recent developments in research where the statistical evidence with regard to the severity of the problem is being highlighted and thus responsible for raising the concerns (Shore, 2003). An article by Roberts in BBC News in September 2009 also reported that almost 1 in every 100 children in England is suffering from autism, thereby creating concern over the future of these children and young adults in specific and the population of England in general (Roberts, September 2009). This figure is supported by the National Autistic Society, which reports that “The estimated number of children under 18 with an autism spectrum disorder (ASD) is 133,500” in the UK (Statistics: How Many People have Autistic Spectrum Disorders? The National Autistic Society). According to the report by the Autism Research Co-ordination Group, “… debate continues as to whether this reflects a real increase in prevalence or changes in diagnostic practice and increased public and professional awareness…. Either way, recent years have seen a reported surge in demand for autism provision across health, education and social services…” (First Annual Report, Autism Research Co-ordination Group, 2006). The subject of whether child health practitioners adequately assess and manage the pain of children and young people with autism spectrum disorder and associated learning disabilities has been chosen for a variety of reasons, personal interest factoring quite highly; this is due to previous experience in this area, and recognizing that improvements could be made in order to improve the patient experience. With growing awareness about ASD and, importantly, its impact on children, different research is being undertaken to investigate and understand the different aspects of ASD. The aim of this assignment was to discuss whether pain can be assessed and managed adequately for children and young people suffering from Autism Spectrum Disorders and associated learning disabilities.

In this essay/literature review, a list of key words used has been provided, along with a brief description of the research method, a definition,and a brief explanation of Autism Spectrum Disorder. It discussed the role of the health care practitioners, especially those dealing with pediatric care, with regard to pain assessment; it also examined the current methods of pain assessment used in the UK and discussed on the subject of whether these tools can be effectively transferred for use with children with ASD and associated learning disabilities. A discussion of stereotyped attitudes was also undertaken to understand the role that these attitudes play in the development of pain assessment and management endeavors for children and young adults suffering from ASD. To carry out the literature review, a combination of two qualitative research methods was used. The content analysis and the textual analysis methods were used in combination to review the literature obtained by using a keyword search of the available databases on various ASD-related literature. The content analysis helped to review the content of the literature based on specific use of words and emergent themes. The textual analysis method helped to review the literature based on the use of phrases, terms and words. The keyword search used included terms such as autism, autism spectrum disorder, pain, children, families, hospital, pain expression, pain management, pain assessment, facial expression, behavioral pain response, psychological pain response, intellectual disability, developmental delays, pain reactivity, behavioral measures, pediatrics and autism, communication, communication deficits, autistic communication, role of doctors in pain assessment, parent report, behavioral changes due to pain, characteristics of autistic patients, pediatric autism, sensitivity to pain, etc. To obtain the literature for this review a search of computerized databases was undertaken. The databases used included CINHAL (Cumulative Index to Nursing and Allied Health), The Cochrane Library and The National Electronic Library for Health. The results of the keyword search provided abstracts to be read and printed, and in some cases in order to obtain the full article, a search of journal databases was used, including The Clinical Journal of Pain. Using these searches six papers were found, which were then critically reviewed for their relevance and accuracy. All of the databases found articles related to the topic. However, many were irrelevant due to a number of factors including not being directed purely at children, discussion about chronic pain, etc. It was felt that a focus on acute pain would be more beneficial in developing this review as compared to a wide angled approach to the topic. A brief read of the abstracts provided by the searches allowed for a decision on whether to include or exclude the paper based on the predefined criteria. After reviewing the papers, two main themes emerged that were explored: assessment of pain, including behavioral clues, and pediatric health practitioners’ role in the management of pain of autistic children and young adults. This essay was thus an attempt to review the existing literature in order to answer the question, “Do Child Health Practitioners Adequately Assess and Manage the pain of Children and Young People with Autistic Spectrum Disorder and Associated Learning Disabilities?”

Stereotyped Attitudes Towards Pain Expression by Children with ASD

The common approach to the expression of pain by autistic individuals is that they are either insensitive or indifferent to pain (Symons, Shinde, and Giles, April 2008). The work of Nader et al. titled “Expression of Pain in Children with Autism” highlighted the lack of parental reports of pain in children with Autism (Nader et al., March / April 2004). The inability of children and young adults to verbally communicate the intensity of the pain often leaves them at the mercy of their parents or the healthcare provider, who often may not adequately and accurately gauge the pain (Dubois et al., 2009). Sometimes, the pain-expressing behavior of children suffering from ASD is mistaken as repetitive behavior and neglected. The study by Hennequin, Faulks, and Allison also highlighted the inability of the parents to gauge the pain expressions of young children with psychological or developmental disorders in comparison to healthy children (Hennequin, Hennequin, Faulks, and Allison, 2003). The question that can be brought forth at this point in the discussion is whether this difference in perception of a child’s pain by parents is due to their inability to understand what the child is communicating or whether it is based on the stereotyped attitude about such children. Another critical stereotype that impacts the assessment and management of pain in children is that they do not experience pain similar to adults due to psychological immaturity (Why Children’s Pain Matters, Pain: Clinical Updates, International Association for the Study of Pain, September 2005). The impact of this stereotype is greater on children with developmental disabilities like ASD. Even young adults with ASD are prey to this stereotype, resulting in neglect of their pain or the attempts by adults to understand their physical pains. The misconceptions about the impact and addiction effects of reducing narcotics and other drugs on children, especially those suffering from ASD, result in children not being administered pain relief medication on time or in adequate quantity (Why Children’s Pain Matters, Pain: Clinical Updates, International Association for the Study of Pain, September 2005). One of the most important factors that can critically affect the way a child perceives the approach of pain assessment and management by health practitioners is poor hospital experience. A lack of understanding of pain may result in withdrawal and fear within an autistic child, thereby impacting the possibilities of future hospital admissions and treatments of pain. It is easy to understand that children and young adults with ASD may require individualized care and attention; however, it is rarely practiced (Gilbert-MacLeod et al. 2000). There is a need to change this attitude, particularly with regard to children with special needs. Messmer, Nader, and Craig identified that children with autism were thought to lack the same “thresholds” with regard to pain as did normal children or individuals (Messmer, Nader, and Craig, 2008). The apparent reduction in sensitivity to pain had given rise to opioid-excess theories, which suggested that autism can be handled by managing the diet of a young child, especially by ensuring gluten and casein-free diet (Myers and Johnson, November 2007). Thus, these different stereotypes impact the pain assessment and management abilities of parents as well as the healthcare professionals caring for children and young adults, especially those suffering from ASD and other developmental diseases.

The review identified different pharmacological as well as non-pharmacological approaches currently used to treat and manage pediatric pain and thereby highlighted the void in the present system to deal with the pain of children and young adults suffering from ASD. The concentrated and combined approach of the healthcare practitioners and parents (family) in helping children with ASD to deal with chronic pain was emphasized in this essay. This, in turn, led to the understanding that there is a need to develop the way the healthcare professionals approach and deal with pain in children suffering from ASD. The lack of existing research on pain assessment and management for children with ASD was highlighted in the research to stress the need to develop this field through research. It was also pointed out that the healthcare practitioners will have to use their knowledge as well as experience in treating such patients and contributing to future research is any headway is to be made towards obtaining a standardised yet responsive approach to pain management of young patients with ASD. The use of family support and the development of specialized tools like Dis-DAT (Disability Distress Assessment Tool) that measure the distress in patients with ASD were highlighted to suggest that a combined approach will have to be adopted to care for the pain of children with ASD. Thus, the review helped to discover the gaps in the present system of healthcare and the role that healthcare practitioners can play in the future for the assessment and management of pain in children and young adults with ASD and associated learning disabilities. This also helped to answer the question that the role played by healthcare practitioners in dealing with the pain of children and young adults with ASD is currently insufficient and inadequate.

References and Bibliography

Almond, C. (1999). Acute Paediatric Pain – Assessment and Management. Australian Emergency Nursing Journal, vol. 2(3), pp. 22-24.

Berde, C. B. and Sethna, N. F. (2002). Analgesics for the Treatment of Pain in Children. New England Journal of Medicine, vol. 347, pp. 1094-1103.

Clinical Practice Guidelines for the Recognition and Assessment of Acute Pain in Children (1999). Royal College of Nursing. London: RCN.

Hennequin M., Faulks D. and Allison P. J. (2003). Parents’ Ability to Perceive Pain Experienced by Their Child with Down’s Syndrome. Journal of Orofacial Pain, vol. 17, pp. 347–353.

Howard, R. F. (2003). Current Status of Pain Management in Children. JAMA, vol. 290, pp. 2464-2469.

Koh, J. L., Fanurik, D., Stoner, P. D. Schmitz, M. L., and VonLanthen, M. (1999). Efficacy of Parental Application of Eutectic Mixture of Local Anaesthetics for Intravenous Insertion. Paediatrics, vol. 103(6): e79.

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