University of Edinburgh

Autism And Visual Impairment - Making Sense

by Fiona Boyce and Fiona Hammond

from Proceedings of Autism and Visual Impairment Conference, March 1996

1 Introduction

We are two speech and language therapists, each working with a different client group: Fiona Boyce is involved with sighted children with 'pervasive communication difficulties', or difficulties of an autistic nature; Fiona Hammond works with blind and partially sighted children who have communication difficulties. We both work in educational settings, in the context of a multi-disciplinary team.

On discussing our respective areas of work, we had found the verbal and non-verbal behaviours of a substantial number of visually impaired children to be very similar to behaviours which often lead to a diagnosis of 'Autism' in the sighted population. This finding was supported by the literature (Fraiberg 1977, Gense and Gense 1994). Such behaviours in the blind child were often described as 'autistic like' or 'autistic tendencies'. (It is assumed that people will be familiar with the types and pattern of behaviours commonly termed as 'autistic').

This paper looks briefly at the two populations and attempts to explain why blind children might be particularly disposed to exhibit behaviours of an autistic nature.

We have identified broad similarities in the approaches we are using with the two different client groups.

The designing of appropriate learning and communication environments for blind children with autistic-like behaviours is considered. In addition, it is suggested that all young blind children might benefit from such an approach.

2 Nonsense?

We would first of all like to consider an example of a real-life conversation between two adults: Man: "Are you tired after all our activity last night?"

Woman: "Were you busy last night?"
Man: "No, we were quite quiet, actually."
Woman: "It was a wild night, right enough!"
Perhaps you will agree that this conversation doesn't seem to make sense. We might assume that one (or both) of the speakers is responding with inappropriate comments.

Consider the following additional information: The general situation:
The man and woman have met while walking their dogs.
(They meet most mornings).

Specific knowledge shared by the two speakers:
Man usually attends dog training club on a Tuesday evening.
Today is Wednesday.
It was wet and windy on Tuesday evening.

Shared physical referents:
Dog yawns.
Man glances at dog
(ie, 'you' in the first utterance is addressed to/refers to the dog, not the woman!)
Hopefully, we are now in a better position to make sense of, or understand, this conversation. In fact, the above conversation was appropriate and meaningful; the reason we had difficulty in making sense of it was because initially we only had access to the language output of the two individuals.

3 Making Sense

As human beings, our knowledge of the world is multifaceted, complex, interactive, cumulative and dynamic. We are constantly and actively building on our current understanding of the world, particularly in childhood, and may have to modify or radically alter our concepts whe faced with additional or contradictory information. One of the fundamental aspects of hi\man learning, however, is that it generally occurs in a social context.

We usually learn to focus on and use different aspects of our knowledge depending on the situation we are in, who we are interacting with or speaking to and in which context. Our shared knowledge, flexibility and creativity allow us to make sense of everyday interactions and con\ei\ations and to participate appropriately, effectively and effortlessly in these exchanges.

4 Beginning to make sense of Autism and Visual Impairment

When we consider the autistic child, or the visually impaired child with autistic-like behaviours, it is clear that their interactions with others can seem inappropriate and ineffective. Their general style of communication may not be easily understood or responded to because it does not follow a mutually accepted, predictable pattern. The child may also be obsessed by particular attributes or functions of objects and activities; the features that we commonly consider to be salient and central to these objects or activities may be ignored.

These behaviours may be regarded as symptoms; they are reflections of the child's mental construction of his world. In order to know more about the child we must look beneath the behaviours themselves and try to identify reasons for the behaviours.

We first of all consider autism. Autism is a disorder which encompasses difficulties in the following three areas: communication, socialisation and imagination. A quote from Uta Frith sums up its central features:

In general terms one can conclude that autistic children have a particular kind of difficulty in making sense of incoming information. Relative to their mental age and IQ, they are impaired when it is essential to extract meaning from a wider context; this is true of linguistic as well as non-linguistic stimuli." (Frith 1970)

If we look more closely at this difficulty in making sense and of drawing together the salient points, in broad terms children with autism have access to the same physical contexts (arguably, the same sensory information) as someone without autism. It is their difficulty in processing the incoming information that results in problems making sense of what they can see, hear, etc.

In contrast, the congenitally blind child does not have access to the same physical contexts as the people around him; he functions without any visual information. Sighted people are thought to rely on vision for around 80% of their information about the world; the blind child experiences 100% of his world without vision. He, therefore, has to make sense of, or process, a very different set of sensory information. NB: For the purposes of this discussion we consider the child who has no useful vision (ie, the blind child) since this helps to clarify the main issues. Each partially sighted child needs to be considered on an individual basis (particularly where cortical visual impairment is present, since levels and styles o(functional vision are then likely to be complex in nature).

Thus, both autistic and congenitally blind children have difficulty in making sense of their worlds. More specifically, we might say that they have difficulty in arriving at the same, shared, understanding as the 'non-autistic' or 'non-blind' people with whom they interact. The sighted autistic individual appears to apply a different set of rules and criteria when processing sensory information, ie, the problem lies in his ability to 'make' sense. Where blindness is concerned, it is clear that what is 'sensed' in the first place will be very different in nature.

5 Autism and Visual Impairment - What Do We Mean?

Where 'behaviours of an autistic nature' are identified in the blind child, do these represent an organic difficulty in 'making something of' (processing) information? In this case we might say that the child has 'autism and visual impairment'.

Or, perhaps the blindness itself can lead to difficulties which manifest themselves as autistic-like behaviours. Can we still refer to this as 'autism'?

We need to look at the two groups in a little more detail.

6 'Autism' and 'Visual Impairment' - Factors Influencing Learning and Communication

6.1 Autism

We now look more closely at some of the factors that might help explain a difficulty in making sense of the social world. We will begin by looking at one of the theories that can help explain the autistic child's behaviour; the 'Theory of Mind'.

The theory of mind is the ability to attribute mental states with content to others - it is sometimes referred to as mentalising'. Autistic individuals are believed to have particular difficulties in this area.
If one is unable to mentalise. then it is difficult to understand that other people habe thoughts. needs/wishes and beliefs that may be different from one's own. If one cannot appreciate other people's points of view, then social situations must be quite frightening and unpredictable; how does one make sense of, and know how to respond to, the behaviour of others? The underlying lack of shared understanding of what interests others can explain the autistic child's insistence on talking about their own topics of interests. They may be unaware of the listener's boredom. Not having a theory of mind can also ha\e implications for a child's behaviour. Behaviours or spoken remarks may be misunderstood, perhaps being seen as rude or precocious. If interpreted in this way the adult may respond in ways that are not helpful to the child and this may Il lead to more confusion on his part.

6.2 Blindness

The blind child, like the sighted child, is actively involved in making sense of his world. In simple terms, blindness means there is an absence of visual information about the world. This lack of information results in the child's active and 'incidental' learning about his world being affected in various ways, when compared to that of a sighted child. In general terms, this may include: an absence of the integratory function performed by vision; a lack of visually motivated efforts on the part of the child; sequential, not simultaneous, perception - can't take things in 'at a glance'; a different focus - details, rather than whole 'picture'; a slower speed of access to information; events probably being perceived in time alone, versus time and space; information processing that is qualitatively different, because of the above differences?
The above list is not exhaustive, however these features alone reflect an experience that is very different when compared with that of the sighted person.

We should not forget, however, that this represents a complete and natural experience of the world for the congenitally blind individual.

7 Difficulties in Learning and Communicating in a World where others rely on others

Santin and Simmons (1977) stated "The world of the blind cannot be created by closing your eyes". This is obviously true, however we must try to imagine the blind child's world and acknowledge and respect his perspective if we are to enter that world and help him learn. The following is a rudimentary outline of the difficulties the blind child faces in learning and communicating in a 'sighted world'. It is an attempt to enter into his frame of reference and is based largely on observed behaviour. Blindness may be the primary disability. It is suggested, however, that difficulties in making sense of the world can arise because information that is not available to the blind child is information that is important to the sighted world in which blind children must interact and learn.

7.1 The physical world

For the blind child, there is a basic difficulty in easily knowing about the existence and permanence of objects; about the nature of objects and object relationships. He will not be fully aware of actions and events. The child will not show interest in objects by looking at them, won't request to hold them by spontaneously reaching out. He will not see others as they use the various items in his environment and, often, will not truly understand their function. The child will not request or elicit names for objects or events around him when he does not know of their existence. The child will be largely unaware of the wider contexts the sighted take for granted; learning may be 'compartmentalised'.

Because the blind child does not see the actions and activities of others, he will have difficulty knowing about and subsequently imitating or emulating these. In fact, he may not realise what it actually means for another person to (eg) clean their teeth or have a meal. even when he is told verbally what the other person is doing and has experience of his own actions in these situations.

7.2 Joint attention/shared reference

The blind child will not easily know what other (sighted) people are referring to when they use language - the real meaning of this language will therefore be lost to them.

The blind child's composite sensory experience will be something that cannot be experienced, fully imagined or described by a sighted person (who relies so heavily on vision). Since the child's sighted communication partners/learning mediators are not privy to the child's experience, the language they use may not describe what the child is actually experiencing or focusing on.

In addition, perhaps blind individuals experience sensations for which the sighted population have no words; concepts which are not part of the sighted world's experience or vocabulary. (Think of the Eskimo language, with all its words for snow - might the blind child have additional ways of conceptualising tactile or vestibular sensation, for example?)

The blind child will have difficulty with deictic terms such as 'here and there', 'this and that', personal pronouns: 'I, you, me, mine, he, she', etc. Other relative terms, such as size (big, small, etc.) will also be problematic.

7.3 Intentions and perspectives

The blind child does not see the reactions of others in situations and therefore can have difficulty in learning that other people have different experiences, different perceptions and perspectives, different points of view.

The child does not receive visual feedback from others concerning elements of his own activities and actions.

The lack of visual information means that the child has difficulty in identifying the intentions of others because usually he will only have access to the spoken language, not to the actual context. For example, the child hears the teacher saying: "Oh, there's the knife, under the table". He then has this 'second-hand' knowledge that there is a knife under the table but perhaps doesn't realise that the speaker had lost it, that she wants/needs it, and now intends her speech to function as a cue for someone else to retrieve it.

If the child has difficulty knowing about the actions, intentions and emotions/perceptions of others, how can he interpret the underlying meanings and intentions in communicative interactions?

We can hypothesise that the blind child is likely to have difficulty with establishing social empathy. He certainly cannot use visual information in order to construct his 'theory of mind'.

7.4 Play

Exploratory and manipulative play are more limited when one does not know what is 'out there' to be explored.

Most manufactured toys are designed to stimulate and address the learning/play needs of a sighted population - their desired function, trigger or meaning may mean nothing to the blind child.

It may be difficult for the blind child to pretend that one thing is something else (eg, the cardboard box is a boat) or that something is there that is not actually there (eg, 'picking up' a pretend cake from an empty plate and 'eating' it). Similarly, pretending to act like (or 'be') another person will be difficult without visual information about other people's lives and perspectives.

7.5 Language Development

The blind child appears to have no significant difficulty in learning and applying the grammatical rules of language. However, because of all the above factors the child is likely to have difficulty understanding what language really means and how and why we communicate. It may be difficult for the child to learn about the symbolic nature of words. The child may focus on the logical, rule-bound features (ie, the structure or form) of spoken language. These features may become important for their own sake and the child may have difficulty following conversations and participating appropriately.

Thinking back to the 'dog-walking' example given earlier; a blind individual listening to that conversation would certainly have had access to the language. He would not, however, have seen the man glance at his dog (perhaps would not even be aware that the dog was present or that the dog was 'with' the man). Therefore, even if he did understand the 'meaning' of each spoken message, how would he begin to make sense of what he had heard?

In outlining the difficulties the blind child faces, the intention is neither to devalue his experience of the world nor to question his ability to learn. On the contrary, we should marvel at the blind child's ability to make any sense of a 'sighted world'.

When a sighted child has difficulty in the three areas of communication, socialisation and imagination, he may be diagnosed as having difficulties of an autistic nature. With reference to these three areas, the blind child faces a challenge if his behaviours are not to be considered 'autistic like'.

The blind child's challenge is to: know about and understand the behaviours of others; relate to others in an appropriate manner; understand the meaning of language and use language appropriately to communicate; show awareness of' and use, non-verbal elements of communication; think and behave flexibly and creatively.
This is a very real challenge indeed; the blind child has no vision, yet vision is a fundamental factor in the development of all the above areas. In addition, these skills are driven by the perspectives and needs of a sighted majority; is the child 'driven' to acquire skills in the above areas when his total experience of the world does not include vision? How can he learn to share our understanding or meet our criteria when he has to make sense of a very different set of information?

As learning mediators, we adults are challenged to provide an appropriate learning environment for the blind child, an environment which facilitates his active learning and enables him to make sense of his world.

8 Intervention - The Learning Environment

As already stated, Fiona Boyce works with sighted children who have pervasive communication difficulties of an autistic nature. These children are placed in two special classes contained in a mainstream primary school. There is some opportunity for integration within the school day.

Fiona Hammond works within a school for the blind. This school caters for pupils aged three through to school leaving age. The pupils have a wide range of needs and abilities and attend on a day and/or residential basis. Over the last two years, a small number of blind children who have "autistic like behaviours' have been educated in a class group, with the curriculum being geared to their complex needs. There are also opportunities for integration in the wider context of the school.

Seeking to identify any similarities and differences, we compared our approaches with these two client groups. In both situations it was acknowledged that it should be the adult's responsibility to tune into the child; the child should not be expected to tune into us. (The children may have difficulty with social empathy; presumably we adults have, and can develop, skills in this area). We aspire to tailor the curriculum and the environment to meet the child's needs. We appreciate that some people might argue that the child must learn to fit into the 'real world'. We strongly believe, however, that the child's overriding need is to learn to make sense of his world, not to learn to 'fit in'.

We discovered that the general principles we adhere to are broadly similar: In both situations the overall aims concern helping the child to make sense of (and interact meaningfully in) his world. In both cases, a child-centred approach is adopted, with the central challenge of being in tune with the individual child's perception of the world. Observing and listening to the child is an important element of the approach, in order to establish his point of view and find out what interests him. Behaviours mean something and tell us something about the child! We can then start with the child's agenda, not ours and spontaneously respond to the child's line of interest in a situation. Learning is acknowledged as an active process and we try to involve the child in the learning process. If the child is simply doing something because we are asking him to do it then he is not learning to do anything other than comply with our wishes - the reward needs to be intrinsic to the activity. Who do we want the child to do a particular thing? What is the 'pay-off' for the child? With both groups of children, we expect our work to be intellectually challenging and are prepared to be flexible, relying on intuition and spontaneity rather than lesson plans. Where the child has additional disabilities then our job (and his) is even more challenging.

When we went on to compare specific elements of our approach, we found that in both settings the children were offered relevant experiences and information in order to help them understand and respond appropriately. The difference was that there was an emphasis on UsIng additional visual cues and information with the sighted 'autistic' children. With the blind children the fact that they could not access visual information was seen as central to their difficulty. affecting all aspects of interaction and learning in a world that relies on vision. In Iuci. their only information was non-visual. The challenge was to provide experiences and information which helped the children make more sense of situations and of their world.

The following are seen to be important elements of the approach currently being used in the school with blind children who have 'autistic-like behaviours'. The multi-disciplinary team continue to develop this approach, being very aware that they have much to learn.

It is suggested that these guidelines should also be considered when interacting with any blind child and with very young blind children in particular.

9 Helping the Blind Child to make Sense of his World

First of all be aware that, for the congenitally blind child, much of his experience of the world does not easily make sense because he has to cope with the visual perspectives of his learning mediators (us). Our spontaneous language and the way we naturally present activities will reflect a sighted perspective and will, therefore, not match his. What sense can he make of this?

If we are to provide useful and meaningful learning experiences we must focus on the child's context, experiencing the world and its elements through his senses, his 'eyes'. All the time we need to remember that whatever he is experiencing it will not include a visual element.

We chould respect, value and follow the way he learns. In the absence of vision, what are the driving forces which underpin learning? Start with his agenda or interests and share, enhance and develop these for his benefit.

Consider the information we expect the child to process. He needs useful, relevant information which matches his need to know, information which he can process, information aquired through experience/play. He needs repeated opportunities to consolidate his understanding. Above all, perhaps, he needs to be protected from our tendency to give meaningless verbal information - those of us who work with blind children will all have countless examples of things we have said which we recognised immediately as 'nonsense' or meaningless when considered from the blind child's point of view.

Consider the curriculum: what do 'the seasons' actually mean to the blind child; what are the important properties of water, sand, dough when encountered with no vision; what distinguishes a river, the sea. a pond when the visual elements are of no significance; what emphasis should be placed on 'listening skills' when, often, the 'distance sense' of hearing is the only information the blind child may have about a situation? Whose world should we help him make sense of; our world or his? We need to be constantly asking these types of questions in order to create, rather than adapt, an appropriate curriculum.

Language input should be constantly monitored. The language we use should reflect, as much as possible, the child's experience of any situation, his perspective; in this way our language becomes meaningful to him. Language should be kept as simple, direct and relevant as possible. We also need to limit the amount of questions we use, particularly since these generally reflect our agenda, not his.

If we are to establish shared reference and joint attention, then the adult needs to use non- verbal, physical, concrete means of doing this. Take the child's activity as a starting point, perhaps feeling or 'noticing' parts of an object along with him. He needs to become aware that you are both focusing on, and interested in, the same things. Perhaps this is more easily accomplished if the adult closes her eyes or wears sleep-shades, thus shutting out any influencing visual information.

The child will not receive visual, non-verbal, clues regarding the meaning of language, the underlying communicative intentions, the reactions/perspectives of others. We therefore need to develop and use other non-verbal cues which are tangible and helpful to the child. This probably necessitates being in close physical contact with the child and requires the adult to E approach every interaction from the child's perspective. The child should also be encouraged to use non-verbal means of communicating his intentions. The child's own non verbal signals should be looked for and responded to. The underlying communicative intent or meaning can also be reflected back to the child (using simple language) where appropriate.

We need to recognise that much of our spoken language can be 'empty' language and may therefore create confusion or inattention. If the child does not know what is influencing what we say, he may simply assume that we constantly change topic with no prior warning. This serves as his language model. We should be confident enough to choose to use no spoken language sometimes, when interacting with a blind child, to focus on non-verbal elements of the interaction, to consider our 'listening' skills, rather than his.

10 Conclusions and Additional Comments

We have discussed the presence of autistic-like behaviours in the blind child. We have tried to explain why blind children might be particularly likely to develop these behaviours. In doing so, we have focused on their difficulties in acquiring information which is usually obtained via the sense of vision. An approach has been outlined which acknowledges and addresses these difficulties.

Can blindness be considered the 'core deficit' in the development of autistic-like behaviours in the blind child? Alternatively, do these behaviours reflect a co-existing inability to draw the available information together in a coherent and meaningful manner; is the child 'autistic and visually impaired'? If so, what is the primary disability?

When designing an appropriate learning environment, such a distinction may be of academic interest only; we are still likely to focus on ways of helping the child make sense of his world, taking his perspective as the starting point. The child's behaviours will still help us to understand this perspective.

For the child to make sense of his world he must experience a world that makes sense to him. We can play an enabling role, however in order to do this we must appreciate that the blind child experiences his world in an intrinsically different way. We must learn to present the world on his terms. We believe the child will not learn until we learn.

11 References

Bigelow, A (1990), Relationship Between the Development of Language and Thought in Young Blind Children. Journal of Visual Impairment and Blindness.

Buultjens, M and Ferguson, R (1994), Lets Play Together. The British Journal of Visual Impairment, 1994, 12:3.

Erin, JN and Corn, AL (1994), A Survey of Children's First Understanding of Being Visually Jmpaired. Journal of Visual Impairment and Blindness.

Fraiberg, S (1977), Insights From The Blind. Souvenir Press.

Freeman, RD, Goetz, E, Richards, DP, Groenveld, M, Blockenberger, S, Jan, JE and Sykanda, AM (1989), Blind ChildS Early Emotional Development: Do We Know Enough to Help? Child: care, health and development, IS, 3-28.

Frith, U (1989), A New Look at Language and Communication in Autism. British Journal of Disorders of Communication, 24.2.

Frith, U (1989), Autism: Explaining the Enigma. Blackwell.

Gense, MH and Gense, DJ (1994), Identifying Autism in Children With Blindness and Visual Impairments. REview, vol. XXXVI, 2.

Jordan, R and Powell, S (1995), Understanding and Teaching Children With Autism. (Reprint) Wiley.

Lewis, V (1990), Development and Handicap. Basil Blackwell (reprint).

McConnachie, R and Moore, V (1994), Early Expressive Language of Severely Visually Impaired Children. Developmental Medicine and Child Neurology, 36, 230-240.

Preisler, P (1991), Early Patterns of Interaction Between Blind Infants and Their Sighted Mothers. Child: care, health and development, 17, 65-90.

Preisler, GM (1995), The development of Communication in Blind and Deaf Infants - Similarities and Differences. Child: care, health and development. 21.2, 79- 110.

Rogers, SJ and Newhart-Larson, S (1989) Characteristics of Infantile Autism in Five Children with Leber's Congenital Amaurosis. Developmental Medicine and Child Neurology, 31, 598 - 608.

Santin, S and Simmons, JN (1977), Problems in the Construction ofReality in Congenitally Blind Children. Visual impairment and Blindness.

Sonsken, P and Stiff, B (1991), Show Me What my Friends Can See. Institute of Child Health, London. Troster, H and Brambring, M (1992), "Early Social-emotional Development in Blind Infants". Child: care, health and development, 18, 207-227.

12 Biographical Details

Fiona Boyce currently works for Croydon Community Health Trust where she is the Specialist Speech and Language Therapist in Autism. Until April 1996 she was Specialist in Autism with Edinburgh Sick Children's NHS Trust (ESCT).

Fiona Hammond is a Specialist in Visual Impairment, working for ESCT. She is based at The Royal Blind School, Edinburgh, where she is Lead Speech and Language Therapist.