Going to the doctor can be a very stressful experience for people on the autism spectrum and their carers.
Here we provides reasons why this experience may be difficult for an autistic person and suggests strategies that can be used to help.
Fear of the unexpected
Although a visit to the GP can provide the structure that autistic people need, in that there is a definite routine involved, it can still cause anxiety. This can be due to the fact that in most cases it is unknown exactly what a doctor will do. The unstructured time in the waiting room and the other patients present can be difficult for an autistic person. The unfamiliarity of the consultation room and equipment used can seem quite daunting. Alternatively, negative experiences from the past and associations with pain can influence an individual's future associations and fear of the experience.
Sensory issues can be a large factor in a person's negative experience at the doctors.
Sensitivity to certain lighting can be a particular problem. For instance strip fluorescent lighting can be experienced as painful and distracting.
It has also been found that the use of pen lights can trigger seizures in those susceptible (20-30% of people on the autism spectrum). (Kagan-Kushnir, Roberts and Snead, 2005)
Touch (tactile system)
If a person is hypo-sensitive to touch they may have a high threshold to pain or temperature and not mind heavier pressure when touched. This could cause difficulty when being examined by the doctor as the person may not appear to be in pain but could, for example, have broken a bone. They may be unable to decode the different body sensations to recognise it as pain.
They can display unusual responses to pain such as laughing, humming or stripping which may make it difficult for the doctor to recognise and identify the problem. It may be that change in behaviour is the only indicator that the person is in pain.
On the other hand, an autistic person may be hyper-sensitive to touch. They may experience the slightest touch as uncomfortable or even painful. They will therefore withdraw from touch which can cause difficulties when a doctor is trying to conduct a physical examination. Materials used could also be a problem, for instance the paper sheet on the examination table, cotton wool or plasters may cause particular discomfort.
Some doctor's surgeries use buzzers to indicate when it is a patient's turn to see the doctor. They may also have music playing in a waiting room. Crying babies or children in the waiting room may also be quite noisy. For those with hyper-sensitive hearing, these types of noises can be magnified and become quite disturbing. Also with this heightened volume, surrounding sounds could become distorted. For the autistic person, this could cause difficulty in recognising sounds, such as a name being called for instance.
Personal space and body awareness
A crowded waiting room may be quite distressing for someone who may need their personal space. Similarly close proximity to the doctor could be quite uncomfortable for the patient.
Problems can also occur when trying to explain where pain is experienced. Those who have difficulty with body awareness may not be able to experience where different body parts are.
Learn more about sensory experiences.
It can be a problem for patients on the autism spectrum to indicate where pain is, due to communication difficulties. It may also be difficult for them to understand what a doctor is asking or to understand when the doctor is explaining what they are going to do to them.
It can help to prepare the individual as much as possible for their visit to the doctor's. Marking the visit on a calendar using visual supports can help. Using flow charts to explain why they have to see the doctor may also be useful.
It may help to visit the doctor's before the appointment to familiarise the person with with the environment. Taking photos (for example, of staff or a building) can provide an object of reference when preparing at home. Using toy doctor's sets at home can help to familiarise the individual with the equipment and its uses.
It may help to get the first or last appointment of the day to avoid waiting for too long and to book a double appointment as extra time may be needed. Afternoons tend to be a less busy time in doctor's surgeries. It may also be worth checking there are no baby clinics on at the time of visiting as this tends to be a noisy time in the surgery.
It may be worth checking if there is a quiet area that the person can sit in if the waiting room is too much for them.
You may also want to take along autism alert cards. These give a brief explanation of what autism is and can be handed out to the public. These may be useful in the waiting room if other patients have difficulty understanding certain behaviours.
There are a number of resources available about going to the doctors.
Social storiesTM could be used to explain the experience of going to the doctor.
It may help to provide GPs or nurses at the surgery with information about autistic patients so that they are prepared for the visit.
It may also be worth letting the doctor know of possible triggers specific to the individual. This can include particular dislikes/likes they have, behaviour and communication strategies that work or interests they have. These may help the GP in forming a relationship with them. The GP may need to be informed of sensory issues so that the examination and equipment can be adapted accordingly (for example, replacing a paper sheet on the examination table with a cloth one). This information could be provided through a letter or phone call before the appointment, or you could use My Hospital Passport, a resource designed to help people on the autism spectrum to communicate their needs to doctors, nurses and other healthcare professionals.
It may help to provide visual supports explaining the process and what may be involved during the visit. This could include sequence cards, checklists or photos. It may also help to use pain scales or body charts to help the person communicate their pain.
A scale could be developed with different pictures/facial expressions/colours indicating severity of pain next to each number. Stress scales could also be used. Please see our Using visual supports information for further ideas.
Time indicators may also be useful whilst waiting for the appointment and during examination. Sand timers and clocks can be used as a distracter during things such as injections so that the person can see a definite end. The time timer shows how much time is left in an interval of sixty minutes using a red dial. Please see equipment contacts at the end of this factsheet for further details.
A reward system may help the person their experience at the doctor's. It can provide them with something to look forward to and enable them to see an end to the experience. Using visual supports to reinforce this will also help. Please see our information on behaviour for further details.
Comforters/distracters and relaxation techniques
Comforters/distracters can help the autistic people with sensory issues, fear or boredom in the waiting room. These could include personal devices for listening to music, earplugs, glasses, books or favourite toys.
Demonstrating on others or toys to show what will happen during a physical examination can help to reassure the person.
Using objects such as stress balls, Chewy TubesTM and Thera tubing can help during experiences of pain or discomfort. Chewy tubes are cylindrical pieces of rubber tubing (which are safe and non-toxic) that can be sucked or chewed on. They can help to release stress. Thera tubing is a similar material that can be made in to a bracelet or necklace to bite down on. Please see equipment contacts at the end of this page for further details.
Relaxation techniques such as deep breathing, counting, singing favourite songs, talking about a favourite interest or looking at favourite books/toys could also help during physical examination or treatments.
Recommended reading and references
- Adamson J. (2003). Topsy and Tim: Go to the doctor. Ladybird books ltd.
- Civardi A. (2000). Going to the doctor. Usbourne Publishing ltd.
- Gray C. and White A.L. (2002). My social stories book. Jessica Kingsley Publishers
- Hollins S. et al. (1996). Going to the doctor. St George's Mental Health Library
- Hudson, J. (2006). Prescription for success: supporting children with ASD in the medical environment. Autism Asperger Publishing Company
- Morton-Cooper A. (2004). Health care and the autism spectrum: a guide for health professionals, parents and carers. Jessica Kingsley
- Volkmar, F. R. and Wiesner, L. A. (2004). Healthcare for children on the autism spectrum: a guide to medical, nutritional and behavioural issues. Woodbine House
- Wolde, G. (1989). Thomas goes to the doctor. Hodder and Stoughton
- Kushnir T., Roberts S. W. and Snead O.C. (2005). Screening electroencephalograms in spectrum disorders: evidence-based guideline. Journal of Child Neurology, 20(3), pp197-206
Last updated: March 2013