Autism affects over half a million people in the UK1 and autistic individuals present optometrists and dispensing opticians with a unique set of challenges. This article discusses my experience in addressing these challenges, and I hope it will help in establishing better communication with those patients identified as being on the autistic spectrum.

Background

Autism was first described by both Kanner2 and Asperger3 but it was not until the late 1970s that it became widely recognised as a neuro-developmental condition.4 Autistic spectrum disorder (ASD) is a lifelong condition characterised by an impairment in the social skills of interaction, communication and imagination, which can manifest as odd behaviour. It may or may not be associated with a learning disability.

The National Autistic Society (NAS) provides information and support for people and families with autism as well as campaigning for increased awareness of the problems faced by individuals with an ASD. In November 2012 they produced a series of guidelines for eye care professionals examining children with an ASD. The guidelines were drawn up by a group of optometrists who have experience working with patients on the autistic spectrum and complement a series of guidelines that already existed for doctors and dentists.

Visually curious

As part of the process of developing the guidelines, we critically reviewed our records of the examinations we had performed and discussed the cases. It soon became apparent that for patients with an ASD we took a slightly different approach from neuro-typical patients. The general consensus was that our records were more descriptive with these patients. There was more emphasis on observational, qualitative data such as descriptions of behaviour and how individuals used their sense of vision. Due to the impairment in communication and social skills, observation of patients is sometimes all that is possible. Any conclusions that can be drawn from these observations often formed the basis of our advice to parents and carers.

One term that we had all started to use was ‘visually curious’. This is used to describe the perceived behaviour of an individual when presented with a new or unfamiliar object. It might be that, upon entering the consulting room, your patient looks around, noticeably familiarising themselves with their surroundings. Or when given a toy, they spend time examining it. Often these patients are unable to complete a traditional measure of acuity and may be unresponsive to objective preferential looking tests. Rather than recording no VA with the implication that this carries (that an individual does not have usable sight), we recorded visually curious (VC) to show that vision is an important sense and is used and interpreted by our patient.

We need to be cautious in our interpretation of this type of data, however, as one of the characteristics of ASD is a weak central coherence. Neuro-typical individuals have a strong tendency to look for meaning in sensory experience, whereas ASD individuals focus on small detail; they have a weak drive for constructing meaning out of complex data. For instance, when asked what they can see in a typical consulting room, they may reply ‘light switch’. This is because they focus on the light switch and do not seem to register the bigger picture.

This can explain some of the reasons why an ASD individual may concentrate on a single object rather than visually explore the whole room and also contributes to the some of the problems we face when trying to measure acuity.

Social behaviour classification

Lorna Wing5 described four groups of people with an ASD based on their social behaviour:

  • Aloof group

  • Passive group

  • Active but odd group

  • Overly formal group.

The aloof group is the most common for ASD children to belong in, although a child may change as they grow and develop. Such children behave as though other people do not exist. They do not respond when talked to and may not exhibit emotion except in extremes. They rarely make eye contact.

By contrast the passive group is the least commonly encountered. They are not completely socially isolated, are responsive when approached, but do not initiate social interaction. They may also have poor eye contact but can and will meet your gaze when prompted. They are also the group that are least likely to have behavioural problems.

The active but odd group are the most likely to make inappropriate eye contact, the problem being with the timing of making and breaking eye contact rather than avoiding eye contact, and this can result in them staring at others. Socially they will make active approaches to others but often with peculiar, one-sided demands or to talk at length about their ‘pet’ subject. They are less likely to respect body space and may make a physical approach holding or hugging the other person.

The overly formal group tend to be older children or adults who are generally higher functioning. They are overly formal and polite in their approach. Their coping mechanism appears to be rigidly following the social rules without necessarily understanding them. They are easily confused by the subtlety of differences in different social situations.

Communication

Communicating with someone who has an ASD is often considered to be the major challenge when examining them.

The development and use of language skills follow a distinct pattern. Up to 20 per cent of individuals will never use speech, but a proportion of them may develop echolalia. Echolalia is repeating the last thing that they have heard. It may be an animal noise or something from the television but is more likely to be speech, accurately imitating any accent or intimation. Echolalia may also be delayed and in some cases this can lead to the repetitive use of a word or phrase heard days, weeks, months or even years before.

The speech development that does occur with ASD is often delayed and may not fully progress. The first stage of this development is the use of single words and simple phrases. However, they may be used with poor grammar in the same way that someone learning a foreign language may misuse grammar such as ‘go car shop.’ Understanding of language is related to this development and children will often have a very literal understanding causing confusion when more than one word can be used for an object such as cup or mug or the same word has two meanings such as the boy who was playing pool and was told to put the ball in the pocket. The boy picked up the ball and put it in his trouser pocket.

Higher functioning individuals may appear naïve in their use of language, providing more detail than is necessary in answer to seemingly innocuous questions.

The use and understanding of language impacts on the use of metaphors, similes and idiom and may prove to be confusing. An example of this confusion with complexity is given in the guidelines:

‘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?’ This is the sort of thing that we would regularly say to patients. However, when we actually look at what we are asking we can break it down into a number of separate instructions:

  • Sit

  • Look

  • Cover

  • Read.

The complexity of dealing with several instructions is a problem. Breaking it down into simple one- or two-part instructions can avoid this confusion. So the instructions quoted above become:

  • Sitting

  • Sitting, good

  • Now looking

  • Looking, good

  • Now one eye

  • Again, what letter?’

This also uses the first ‘X’ then ‘Y’ strategy which is very useful. Many speech and language therapists encourage the use of this syntax and concept. For instance we may say ‘Sit, then look’ or ‘Listen then do’.

[CaptionComponent="2845"]

It is common for children to use communication aids. Often the simpler the better and one of the most common is PECS, the Picture Exchange Communication System (Figure 1). In this system a picture card or symbol represents the person, object or place and the child communicates their wishes by pointing to the card or handing it to the appropriate adult. Similarly, to communicate with the child you can give them a card. One of the most common uses of this is the visual timetable. On a visual timetable there are pictures that represent the activity that the child will do that day which might be school, swimming, granny’s house etc. It can be useful to have a card that you can give with eye test or optician to put on the timetable. This can be achieved by providing an information leaflet or appointment card that has a picture of the optometrist that the child will be seeing.

Parents of a child with an ASD have daily battles with simple tasks such as getting a haircut or going shopping and many will have developed strategies that are unique to their child but which help to calm their child down. As the parents will also be aware testing their child will be a challenge for the practice, many will come in before the appointment to discuss the examination or ask questions about how you will approach the examination with their child.

Asking about coping strategies and triggers to anxiety or meltdown can be invaluable. As with many children they may have a particular interest in one subject or toy. Knowing that a child is obsessed with Doctor Who or dinosaurs allows you to include their interest in your eye examination routine.

[CaptionComponent="2846"]

Many practices now have computerised charts that allow you to upload pictures for fixation. If you know a child is interested in Doctor Who, having a series of Doctor Who pictures will allow you to establish a fixation (Figure 2). This can be invaluable as it allows you to conduct a number of tests that may otherwise have been difficult, for instance retinoscopy, cover test and ophthalmoscopy. Having something that is familiar to the child in this otherwise alien environment will help to calm the child.

Familiarity and consistency are key to individuals with an ASD and it will often help if they have previously visited the practice and sat in the chair in the examination and seen some of the equipment that will be used.

It may be that allowing the child to turn the room lights on and off themselves helps.

Another key to success is being able to offer a ‘no wait’ appointment. For many ASD children the noise and people in a typical waiting or reception area can be unbearable. Offering an appointment where they can come straight through to the testing room or an alternative route that avoids busy areas can help to avoid unnecessary distress. This may mean that an appointment slot starts on the hour but the patient arrives at five minutes past to allow for any running late or alteration to the room such as moving equipment or getting out a box of toys.

Time is a concept that many children find difficult. Many people advocate the use of timers to give a visual reference to the child during the examination. However, you do need to be consistent and finish on time even if you have not completed your examination. This principle may be extended to individual tests during the examination. One technique that works well for unpleasant tests such as ophthalmoscopy is to tell the child that they must concentrate and do what they are asked until mum has counted to say 20 or 30. Mum will stop if you stop doing what is asked of you. The only potential problem is that you may not have managed to do everything that you wanted to and this emphasises the importance of prioritising tests and considering the longer term relationship with the child. You may need to accept that one area is perhaps completed less well today but will be a priority on their next visit.

Model answers

(The correct answer is shown in bold text)

1 Autistic spectrum disorder (ASD) is unlikely to cause impairment of which one of the following abilities?

A Cognitive ability

B Social skills

C Communication

D Imagination

2 According to Wing’s classification which group is least likely to respect body space and talk about their pet subject.

A Aloof group

B Passive group

C Active but odd group

D Overly formal group

3 Echolalia is best described by which one of the following?

A Fear of noise

B Repeating the last thing heard

C An inner ear problem

D A hospital acquired infection

4 Which one of the following will not facilitate communication with some one with an ASD?

A First x then y

B Using idioms

C Keeping instructions simple

D Being specific in use of words

5 The acronym PECS describes which one of the following?

A Primary Eye Care Services

B Post Evaluation Care Services

C Picture Exchange Communication System

D Poor Eye Contact Syndrome

6 Which one of the following strategies is not helpful when testing an individual with an ASD?

A No wait appointments

B Familiarisation visits

C Giving your patient time in the waiting room

D Appropriate fixation targets

References

1 www.autism.org.uk

2 Kanner L. Autistic disturbances of affective contact. Nerv Child, 1943 2: 217–50.

3 Asperger H. Das psychisch abnormale Kind [The psychically abnormal child]. Wien Klin Wochenschr (in German) 1938, 51: 1314–7.

4 Boucher, J. Autistic spectrum : characteristics, causes and practical issue. SAGE publications 2009.

5 Wing L. The autistic spectrum : a guide for parents and professionals. Constable 1996.

Andrew Millington runs a private practice in Chepstow and also works in the Special Assessment clinic at Cardiff University