Health care for children with Autistic spectrum disorders:

1. Health care for children with Autistic spectrum disorders: An evaluation of the ‘Where does it hurt’ system when conducting medical examinations. Authors: Dr Hannah Mills, Mrs Irene Hammond, Dr Rachel Brookes, With thanks to The Hollies School, Cardiff

2. Overview • Why do we need a communication system. • Past research • Procedure • Results • Limitations • Future research

3. Why do autistic children need a communication system? • Increased prevalence of medical disorders associated with autism (Wang et al 2011) • Deteriorations in physical health are linked to increases in challenging behaviour (Kring et al, 2010). • Specific phobias of medical visits and examinations in 31% (Gilles et al, 2009)

4. What has been tried? • Midazolam and Ketamine (Shah 2009). • Exposure to feared objects e.g. stethoscope – individual sessions over 25 weeks, culminating in a physical examinations (Gillis 2009). • Intensive 9 week training program using DVD modelling, escape extinction with medical and physical examinations (Cuvo et al 2010). • High probability request procedure (Riviere 2011 et al) – children no longer needed sedation for a medical examination. • Pilot study using using a visual schedule and reinforcement during a medical examination (Gabriels et al 2011).

5. The Study • Pilot study to evaluate the use of the ‘Where does it hurt?’ communication system designed by Irene Hammond, school nurse at The Hollies school, Cardiff. • Intervention group – 12 children who have been trained using the system. • Control group – 10 children unexposed to the system. • Data of child ability levels collected from teachers and cross referenced with medical notes. PROCEDURE • Conduct medical examinations with the assistance of the ‘Where does it hurt?’ communication system in the intervention group or without this in the control group. • Score each child immediately after: very successful, complete with difficulties, incomplete, unsuccessful. • All examinations observed and notes made for qualitative analysis later.

6. Results

7. Descriptive Analysis Intervention Group: • Compliant – all lay flat, all attempted to open mouth. • Calm • Sense of control maintained by examiner. • All children attempted all aspects of examination • 2 children received partially complete examinations, both had severe learning disabilities. • 2 of 12 children required additional support. Control Group • More active then intervention. • Decreased compliance in all areas. • Failure to engage with examiner. • 2 children received very successful examinations, both had normal verbal communication skills. • 8 of 10 children required additional support

8. Discussion • The ‘Where does it hurt?’ system may provide cues for the actions. • My relieve anxiety, making examinations predictable. • Level of learning disability seems to affect how successful the examinations were. • Children with ASD and normal verbal communication do not need the system. • The use of a consistent system may allow autistic children to associate these specific symbols with pain and medical examinations.

9. Study Limitations • Small sample size - pilot • Central location • Nurse Presence in school • Video recording of examinations would allow for quantitative results to be achieved • What would happen in an acute situation • The problem of matching samples

10. Future research • Conduct the study again using recordings and independent scorers to reduce bias and analyse which areas of the examination the children struggle with. • Long-term follow up of children, examining them before and after use. • How effective is the system in an acute setting e.g. A&E. • Application to different groups e.g. English as a second language.

11. References Cuvo, A., Regan, A., Aukerlund, J., Huckfeldt R. & Kelly C. 2010. Training children with autism spectrum disorders to be compliant with a physical examination. Research in Autism Spectrum Disorders. 4, 169-185. Gabriels, A., Runde, R., Gralla, J. Pan, Z., Golden, E. Wamboldt, M. & Mesibov, G. 2011 Examining the use of a visual schedule/reinforcement system for routine medical exams with children on the autism spectrum: A pilot study (Poster Presentation). Gillis, J., Natof, T., Lockshin, S. & Romanczyk, R. 2009. Fear of routine physical exams in children with Autism Spectrum Disorders: Prevalence and Intervention effectiveness. Focus on Autism and Other Developmental Disabilities. 24(3) pp. 1560168 World Health Organisation. 2010ICD-10: The ICD-10 Classification of Mental and Behavioural Disorders: Clinical Descriptions and Diagnostic Guidelines. Kring, S., Greenberg, J. & Setzer, M. 2011. The impact of health problems on behaviour problems in adolescents and adults with Autism Spectrum Disorder: Implications for maternal burden. Social Work and Mental Health 8(1), pp. 54-71 Werner, S. 2011. Assessing female students’ attitudes in various health and social professions towards working with people with autism; A preliminary study. Journal of Interprofessional Care 25, pp. 131-137. Rivieire, V., Becquet, M., Peltret, E., Facon, B. & Darcheville, J. 2011. Increasing compliance with medical examination requests directed to children with autism: effects of a high-probability request procedure. Journal of Applied Behaviour Analysis. 44(1), pp. 193-197. Shah, S., Shah, S., Apuya, J., Gopalakrishnan, S. & Martin, T. 2009. Combination of oral ketamine and midazolam as a premedication for a severely autistic child and combative patient. Journal of Anaesthesia, 23(1). Pp.126 – 128 Wang, L., Tancredi, D. & Thomas, D. 2011. The prevelance of gastrointestinal problems in children across the United States with autism spectrum disorders from families with multiple affected members. Journal of Developmental and Behavioural Paediatrics 32, pp. 351-360