Although there are a range of techniques and measures to support a child with autism, there are challenges presented by everyday life, not least the need to attend hospital visits. This can be disorientating even for those without a neurodevelopmental disorder, but for a child with autism it can be upsetting and confusing.
The National Autistic Society in the UK outline how an autistic child or person may perceive a visit to the doctor: https://www.autism.org.uk/about/health/doctor.aspx whereby a number of factors may come into play such as a fear of the unknown; sensory issues; hypo-sensitivity to touch and other tactile situations; noise; communication and personal space.
Hospital visits for autistic children could be for routine tests; for screenings to obtain an ASD (autism spectrum disorder) diagnosis, or for other secondary conditions that the child needs treatment for. Whether the test is for hearing, occupational therapy, or for more invasive treatments such as a phlebotomy (providing a blood sample) this could potentially lead to a traumatic experience for an autistic child. However, the good news is that this can be handled effectively with the right interventions and preparation.
Interventions to Support Autistic Children
Paediatric specialists concur that hospitals can be stressful places for children with autism, and in the case of ASD, children can often require repeat testing and screening for medications and associated diseases. An example of a successful intervention that has gained momentum in Europe and the U.S. is an experiential study carried out by an Irish team of specialists at Galway University Paediatrics Department.
Doctors at Galway University had initially experimented with using light sedation in the form of midazolam due to some of the problems they had experienced in drawing blood from children with ASD. Although this led to a certain amount of success the team were interested in looking at other strategies such as stories and visual schedules as an alternative therapy.
Using a model initiated by Carol Gray, a U.S. teacher, the team were interested in using a concept known as social stories. These are social learning tools developed in the 1990s and which have been successfully used to support meaningful communication between those with ASD, parents and health professionals: https://carolgraysocialstories.com/social-stories/. The use of this technique by the Galway team arose as a direct result of a parent mentioning the social stories as a means of tackling the challenges of phlebotomy for those with ASD.
How Social Stories Can Help Those With ASD
The stories work on the principle of short phrases that follow a logical sequence and that are able to be understood by a range of people including those with mild learning difficulties. The story is told in a sequential way in conjunction with the use of visual aids.
In the Galway University example, the team used a five page picture document which goes through the whole process from the waiting room to the blood test, and in which short explanations are given about each stage. The children were also shown a phlebotomy pack but without the needle which was felt to make the child feel more in control of the situation.
When children who had previously needed sedation to undertake a blood test were taken through the process it was successful in 9 out of 10 cases, and parents were very pleased with the results as opposed to medication. The parents also felt empowered to have some say in the treatment of their child and that they would be listened to if they had helpful suggestions or techniques that they thought may assist.
Liaising with Health Professionals
Although not every hospital uses social stories, most clinical settings have toolkits and guides to support a child’s visit. Therefore, parents should check with hospital staff if their child is beginning treatment at a new hospital. As in the case of Galway they may either have support in place or may be open to suggestion about new ways of supporting children, such as the use of social stories which are now in place in many hospital settings.
Modern treatment is in line with the new philosophy that the autistic person shouldn’t have to adapt to a new and stressful environment, but that the environment should be tailored to fit the needs of those with ASD as much as possible, and that both child and parent should feel informed and enabled to cope with hospital visits.
Many hospitals will have a toolkit or set of literature that parents can access before any visits so that the parents know what to expect. This will include what support is available and how they can prepare their child and work with staff to improve treatment outcomes, and this will include resources on how to prepare your child prior to a hospital visit by taking a proactive approach.
As children with ASD are likely to visit hospitals for a range of procedures over the course of their lifespan, it is vital that health professionals and parents have techniques that are effective and tested in reducing anxiety and stress in children.
Assessing Triggers in Autistic Children
Of course, it is also imperative that health professionals and parents are aware of triggers that may signal that the child is feeling overwhelmed or scared, and then this can be dealt with appropriately during the course of a hospital visit if it arises.
As well as other more obvious indicators of anxiety, some of the signs that a child may be feeling distressed include repetitive behavior, such as full body movements, jerking motions or flapping arms or hands. Other signs could be repetitive speech, peering out of the side of the eyes, or walking on tip toes which could be an indicator of sensory issues.
If signs of agitation such as the ones above become apparent during a hospital visit then measures can be taken to allow the child a break to help them to calm down and regulate their behavior. Many toolkits and hospital resources will also include tips and techniques on how to do this effectively, and will include materials and help for parents to prepare for a hospital visit, and to ensure that it is at the right level for the child’s understanding.
This article was written by Conor O’Flynn of O’Flynn Medical. Conor has vast experience working in the healthcare industry and has a particular interest in medical equipment. The area of equipment to help autistic children when visiting hospitals is an area which he feels needs significant development.