This guidance is from eye care professionals who work with people on the autism spectrum.
More than 1 in 100 people in the United Kingdom are on the autism spectrum. Below, we give some advice on approaching a new patient.
Many people on the autism spectrum find visual aids and prompts useful in helping them to understand what will happen next and importantly when something will end. Therefore the aids that have been developed for ‘an eye-test’ use a pictorial narrative that can help the patient understand what is required of them and what will happen.
The initial appointment
Parents may be unaware of the need for an eye-test for their child, owing to prioritising other difficulties that their child may face. Many everyday tasks such as trying on new shoes, having a haircut or going to the cinema can be difficult for a child on the autism spectrum.
Parents and carers will have devised strategies or key words or phrases that they use to calm down or gain the attention of the person. It is imperative that the practitioner involves and talks to the parent or carer beforehand to learn what they may like or dislike, for instance counting, shapes, lights, Nintendo characters, and so on.
Knowing when something will happen is important to a person on the autism spectrum, for instance that the appointment will start at 10:00 and end at 10:25 promptly.
The first appointment may simply be to familiarise the person and allow them to explore the consulting room and feel comfortable in the place. This initial visit is important to gain the trust of the patient, and their willingness to return again. It should be fun and non-invasive.
The tips outlined below may ease the process of communication.
‘Hello, sit up here for me on the big chair and look at that chart on the wall. I am just going to cover your eye and I want you to read the letters for me, OK?’. There are four instructions in that statement: ‘sit, look, cover and read’. This is too complex for many patients on the autism spectrum. Therefore, break it down into simple one- or two-part instructions: ‘Sitting, sitting, good, now looking, looking, good, now one eye, again, what letter?’.
The following strategies can be helpful:
- using the syntax ‘First X then Y’, because many speech therapists aim to develop this mode of thinking in line with communication: ‘First I speak, then you speak' - a patient on the autism spectrum may be familiar with ‘First sitting then Looking’ or ‘First eye one then eye two’
- using an egg-timer or countdown clock to indicate how long they will be in the room
- using ‘again’ to indicate that you want to repeat what we just did
- using the parent or carer as a model: ‘First mummy puts on glasses then Jack puts on glasses'
- turn-taking: if ‘we’ all do it then at some point it will be ‘my turn’ to look or read or put on the glasses.
Language such as ‘I wonder if I can see what you had for breakfast if I look in your eye’ may not be understood because of the complexity of the sentence, and because the patient could take this literally.
Every word must be directed at exactly what you want the patient to do, with no ambiguity or demands on them to have to interpret the meaning. A useful anecdote here is the story of a child on the autism spectrum playing pool and being instructed to put the ball in the pocket. The boy picked up the ball and put the ball in his trouser pocket.
It can take time for a person on the autism spectrum to respond to a statement or question. You must ask a question and then leave time (20-30 seconds) for the question to be understood and a response given. Be patient, repetitive and calm.
Echolalia is a term to describe the repeating of a phrase or sound. If the patient has echolalia then they may repeat the last part of any phrase heard. Therefore, turn the question around and see if the response remains the same because the person is just repeating the last thing that they have heard, or if it changes. Here is an example of echolalia.
Practitioner: Better first or second?
Practitioner: Better second or first?
Don’t forget to say how long it will be and stick to the time: two minutes means two minutes!
The examination - what should I do?
What can be achieved in the eye examination will be dependent on many factors and it may be the case that on the first visit, little clinical can be achieved beyond the patient becoming familiar with the room, and with you. This is as important as a measure of acuity, though, given that you might well be seeing the patient for years to come.
One measure of vision may be ‘visually curious’. If you give them a toy, do they explore the features with their eyes, or dismiss it because they have difficulty seeing the features of the toy?
Parents and carers will understand that you may not be able to do a full examination. With children for whom a visit to the hairdresser is difficult, the parent may cut one side of their hair while they sleep and the other side the next night. They will understand if it is not possible to do ophthalmoscopy and a full binocular vision assessment in just one visit. What the parents and carers want is to know that the person can ‘see’ and if any further investigations are possible then that is a bonus.
Suggested minimum tests and tips
- Vision. Use sunglasses with one lens tinted to occlude the right and left eyes. Use turn-taking to change the pair of glasses: ‘First me, then you.’
- Binocular vision. Pupil reflexes – are the eyes straight?
- Twenty dioptre base out test
Cover test ’First eye one then eye two’ looking here
- Eye movements – a child may follow mum’s hands or a favourite toy.
- Colour Vision. Ishihara plates, maybe what number? Where are red spots?
- Ophthalmoscopy. Use monocular indirect and a dim light.
- Refraction. A cycloplegic refraction may be clinically necessary. However the parent or carer, and where possible the patient, should understand the reason clearly. The blur and glare induced may cause significant stress and parents need to be aware of this. A lack of understanding of things that are strange (blur) and when something will end (concept of time) are core difficulties for people on the autism spectrum.
Mohindra retinoscopy, or retinoscopy with a +2.00D lens and an estimation of any error, may be all that can be achieved. Binocular auto-refractors are advantageous but not readily accessible. The subjective refraction may or may not be possible owing to resistance to putting on trial frames or understanding what is required and when this is the case repeated visits for retinoscopy (with cycloplegia if required) may be all that is possible.
Remember, you may not be able to do ‘the best’ eye examination on the child, and to do as much as is possible to reassure yourself and the parents that the vision is good may be in some cases all that is possible. Naturally referrals should be made if the practitioner feels that there is a clinical need that the practitioner or practice may not be able to meet.
- Use direct and simple language.
- See the patient at a quiet time of the day.
- Allow extra time for the consultation or do parts of the examination over several visits.
- Explain in advance what will happen during each procedure.
- Above all else, be patient and understanding.
Dr Paul Constable, City University, London
Mr Andrew Millington, Cardiff University
Mrs Pamela Anketell & Dr Julie-Anne Little, University of Ulster
First published November 2012