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Blindness, mental retardation and – or autism

Focus: School Years

Topic: Research

Anette Ingsholt

Psychologist,  ph.d.

Refsnæsskolen,

National Institute for Blind and Partially Sighted Children and Youth

Kystvejen 112

4400 Kalundborg

Denmark

+45 5957 0100

Anette.Ingsholt@Vip.Cybercity.dk

In the following I am going to talk about blindness, mental retardation and autism in children in order to elucidate some connections between the three impairments. By focusing especially on similarities I want to describe why blind children are at risk of developing autism related behaviours, and why they sometimes do so to a degree that an individual child may be diagnosed as an “autistic child”. Autism related symptoms of blind children range from the blind autistic child at one end to the well functioning blind child at the other. Between these extremities blind children with autism related symptoms in varying degrees are to be found.

The assumptions, descriptions and conclusions of this paper are based partly on research made in the separate fields concerning autism, blindness and mental retardation, partly on personal experience from my own work with blind children and partly from retrospective studies of Danish case records of blind children and youths.

The children I shall be talking about are, first of all, blind with or without light perception and, second, they are quite often mentally retarded to some degree. Thus, these children may be moderately mentally retarded, having an IQ between 35-50, or mildly retarded with an IQ between 50 and 70,  or they may be normally functioning with an IQ above 70. I am not talking about the severely mentally retarded children with an IQ below 35, because this is not meaningful in connection with autism.

The mentally retarded children are all characterised by being in the pre-operational or the concrete

operational stages as defined by Piaget.

They all have the fundamental capacity to develop concepts and to categorise objects. Their capacity to acquire concepts therefore also enables them to learn to understand and use symbols..

In the moderately retarded group, the children’s way of thinking is very concrete. One will often find that they have difficulties in imagining changes based only on thinking. This means that they have difficulties in handling situations that demand new and alternative ways of action, and the children in this group have difficulties in learning to read and to learn arithmetic.

The mildly retarded children are able to develop most of the skills required for daily living and are thus able to learn to read and to do arithmetic. While they are also able to use symbols they have difficulties in using a symbol representing another symbol.  In addition, compared with children of normal intelligence the mildly retarded children show a lower capacity for using abstract thinking in problem solving.

Mental retardation is not an uncommon impairment. For example, a study in the United States has shown that approximately 3% of the U.S. population are properly classified as mentally retarded. Children in the mild range of impairment make up the vast majority of those classified as retarded, 86% of the retarded population belonging to this group, while about 10% are classified as moderately retarded.

Why talk about mental retardation or autism in connection with blind children? In Denmark about 55% of all visually impaired children have other impairments as well, but we have no statistical record of the number of children with the combination of mental retardation and blindness.  However, I know from my own experience with blind children that it is not unusual to meet this combination.

What, then, about the combination of autism and blindness?  For many years, we have been focusing mainly on autism related symptoms in blind children when discussing the consequences of being blind. So, blind children’s risk of developing inappropriate social or emotional behaviour has often been stressed in the context of early intervention. 

We have all been impressed with the descriptions made by authors such as Fraiberg of the development of blind children with autism related behaviour.  It has made us curious to find out why blind children so often develop behaviour traits known from descriptions of children with autism.  Other descriptions made on the basis of intensive studies of relatively small groups of blind children have further sharpened our curiosity.

These studies, combined with descriptive accounts of the development of individual blind children, have left us with a strong and emotional charged impression of a difficult social development in blind children. Descriptions of a normal functioning blind child do not leave us with the same emotional impressions. Are these emotional impressions the reason why we often stress the risk of a blind child at developing in an inappropriate social or emotional way and the reason why we talk about autism related traits in blind children?  Based on my experience with blind children in Denmark I cannot help asking myself whether it really is true that blind children are relatively more at risk than normally sighted children of developing autism or autistic traits? Or is it a myth? Is it possible, by looking at similarities in the development of blind children and children with autism, respectively, to find a connection between blindness and autism?

Autism covers a number of key features, which together make up a syndrome. It is a rather newly discovered disorder first described by Kanner in 1943. Since then research has tried to reach an understanding of this special disorder and to find the causes of the syndrome.

Today there is general agreement about how autism is identified and diagnosed. For instance, in the ICD-10 the condition of childhood autism is defined as follows: Impaired or abnormal development must be present before 3 years of age, manifesting the full triad of impairments:

1. in reciprocal social interaction

2. in communication, and

3. in restricted, stereotyped, repetitive behaviour

The prevalence of autism has increased since Kanner described the first cases. Today the Medical Council of Research has mentioned that autism is to be found in about 0.6% of all children from 6 years and upwards. If we include children in the preschool years the figure will be approximately 0.9%. It means that the prevalence is 9:1000.  This is a larger number than earlier mentioned, where the prevalence was estimated to be between 4 to 11 of every 10.000 child.  Also, in studies of autism, it has been shown that mental retardation normally is an additional impairment in 3 out of 4 children with autism.

In Denmark we have about 1700 visually impaired children below 18 years of age. Therefore we may expect to have about 1 to 2 children with a diagnose of autism – independently of the visual impairment. But we have more children than that diagnosed as children with autism.  Also, we have visually impaired children with all degrees of autism related symptoms without the diagnose autism. Often, these children are mentally retarded too.

Let me now turn to the possible similarities in behaviours of children with autism and blind children.

Because of the time limit here it is not possible to describe all the behaviour symptoms in details. I have chosen to list them on overheads and in the following I will briefly stress the most common behaviour symptoms that are related to deviant behaviour in blind children.

First about reciprocal social interaction:

The area of social impairment is often seen as the core deficit in autism.

For blind youths the social isolation in daily life is often mentioned as a problem. In early social development the blind child has to learn to solve a variety of problems.  This may in general give a delayed development of social behaviour, which is often observed in blind children in their interaction with peers in nurseries and in schools. Some of these early problems are possibly not solved at all in some children and may be the cause of some abnormal social behaviour – also later in life. These problems all relate to the missing visual capacity and – to in some extent - to the mental retardation often found in the deviant blind children.

Below, all subjects marked with a star are problematic both for children with autism and for blind children.

Reciprocal social interaction:

* Use of proto-imperative and proto-declarative acts

 *    Deficits in joint attention

 *    Deficits in imitation

- Especially motor imitation

- In play and activities

* Abnormal eye-contact

Avoidance of physical contact

(*) Unusually content to be alone

Use of other people as ”an extension ” of himself as a tool

Social reserve and indifference

* Abnormal emotional contact

Abnormal use of expressive emotional expressions

Abnormal use of smiling

              Difficulties in perceiving emotional expressions of other people     

* Different play actions

In autistic children the abnormal behaviour symptoms in the area of social interaction are considered to be caused by a deficit concerning social understanding. In the blind children the abnormal behaviour is obviously caused by the blindness. Still they have overwhelming effects on the social development of blind children. The difficulty in perceiving emotional cues from people in the surroundings makes it more complicated for the child to get social references and the like. This, in combination with difficulties in perceiving non-verbal emotional signals that are often expressed in facial expressions and in body language, may create communicative difficulties in social interaction and conversations. Delayed use or problems in use of proto-declarative acts and joint attention may have consequences for, for instance, the development of theory of mind. Problems of imitative and imaginative play in general, especially in connection with pretend and symbolic play, create problems in play interaction with peers etc.

All these problems can be seen in normally functioning blind children. Often, however, they overcome some of the difficulties in time, resulting only in a delayed social development. But in some area there will remain a qualitative difference compared with the development of normally sighted children.  The severity of these qualitative differences, especially in connection with reciprocal interaction, is extremely important when you evaluate the social development in a blind child suspected of having an autistic disorder in addition to blindness.

The next diagnostic criteria concern communication. Again I list the symptoms found in children with autism and compare them with behaviour known in blind children.


Communication


(*)  Non verbal language

       Difficulties in development and understanding of the use of dialogues

(*)        Use of communication as a means of self-stimulation

Missing system of turn-taking

Missing initiative from the child in establishing communicative interaction

*     Echolalia.

Intentional communication

* Pronominal reversals

* Few or missing use of gesture

Impaired modulation

(*) Missing or delayed development of the phonology

Missing or delayed syntactical development of language

(*) Rote-memory

Approximately half of the children with autistic disorders do not develop meaningful speech, and in those who do, a variety of communication abnormalities have been identified. When blind children do not develop a verbal language some other impairment has to be present in addition to blindness. This may be mental retardation, specific language disorders, autism etc.

Two of the behaviour symptoms listed are commonly observed in the communicative development of blind children. These include as the most important element the phenomenon of echolalia.

In autistic children approximately 85% of those who develop speech display “echolalia” early in their language development.

Most of the blind children are exhibiting echolalia in their development of communication and language. Both autistic children and blind children use echolalia for a variety of reasons, for instance, to attract the attention of a partner, to mark joint attention, to show a lack of  understanding, to indicate a question or an answer, to return greeting, to issue a communicative check or as part of normal language learning and development.

Also, the reversals of pronouns have often been mentioned in connection with blind children. It mirrors the difficult task of developing a sense of self, but this task is often accomplished around the age of 4 to 5 years if not before.

 

It is common to blind children that they generally exhibit a good capacity for developing communicative and language skills; hence, their most severe problems are rarely seen in this area, except for the echolalia and reversals of pronouns.  Normally, problems in communication or language development, e.g. a failure to master the system of turn-taking or an abnormal resistance to quit echolalia, therefore have to be considered seriously.

.

The third diagnostic criteria of autism include


Restricted, stereotyped, repetitive behaviour


(*) The sensitivity to changes and the need for sameness

Resistance to changes, dependence on structures

* Stereotyped, self- stimulatory behaviour

Mannerism, blindism

 *    Overselectivity

Hyper- and hypo-sensitivity

Inattention to stimuli from the surroundings

Aversion to special kinds of texture

A special interest of special surfaces

Aversion to solid food

No response to talk, sounds, offers of objects

Ignoring of persons

Reduced reaction to hot and cold stimulation

A love to interact in “wild” motor acts

* A good memory of music

* Fondness of sorting out, arranging and classifying objects

Some of these symptoms can be seen in a variety of degrees in blind children. But most of them are seen in blind children who also are mentally retarded. Some of the symptoms may be suspected to have roots in more general or specific brain damages.  The stereotyped behaviour is an exception. This behaviour is also seen in many normally functioning blind children without additional impairments. In these cases the stereotyped behaviour has a special connection to blindness and deserves to be referred to as “blindism”.

Similarities between blind children and children with autism.

According to the list of similarities mentioned above of traits of behaviour in blind children and children with autism I am now able to say that blind children are at risk of developing autistic traits.  The consequences of blindness in themselves have an overwhelming impact on the social development of blind children resulting in some of the same difficulties in understanding social interaction as found in autistic children. Both the autistic and the blind child have to learn - by help of cognitive ways of thinking - what normal children without any impairment normally intuitively know.  This natural “knowledge” stems from an innate capacity, which the autistic child is presumed to lack and from visual cues of emotional and communicative signals from people around the child. The problem of the blind children is especially the missing information from this visual capacity.

It is interesting that different causes may create similarities in the behaviour of blind and of autistic children.  Both autistic and blind children need to use their cognitive capacities to develop social skills in interaction with other people.  Therefore the broadness of the cognitive capacity is of extreme importance to the blind child as well as to an autistic child.

Blind children and children with autism have been observed to have similar problems in establishing joint attention, in developing a theory of mind, in experiencing and perceiving things as unified wholes, in separating and selecting essential information from the overwhelming input from their surroundings, in their lack of abilities to catch social signals from emotional expressions of other people,  in imitating behaviours (except for language-imitation) and in not being able to signal emotions to other people, in missing ability to symbolise, in reduced ability of thinking in terms of unified wholes,  in experiencing and bringing experience of sequences into a context,   in  imagination and in performing symbolic play or at a more or less abstract level. All these difficulties are mostly dependable of the function of the social as well as the cognitive capacities in the individual child.

Therefore we also have to look at a possible mental retardation. It applies to both children with autism and blind children that the higher or the more normal that the child’s functioning is, the fewer and the less pronounced are the deviancies and the eccentricities of the behaviour of the child. Conversely, the more mental retardation that the child has, the greater are deviancies of the child from normal behaviour and development. .

This applies to all areas mentioned above. A connection between abnormal behaviour and mental retardation in addition to blindness or autism is obvious.  But one may also suspect that mental retardation in itself does cause some of the difficulties the children have and that these difficulties, combined with the specific difficulties based on being blind, may contribute further to the development of behaviour resembling that of autistic children.

The difficulties mentioned above are essential for the educational treatment and for the educational conditions we offer to blind children. It is important to find out how we create optimal development in the individual child considering their individual difficulties stemming from blindness, mental retardation and possibly autism. The BMA model tries to meet some of the fundamental needs in children with this combination of impairments (this model will be described in a paper on this conference too by Kirsten Larsen). The needs of these children and youths are met in an individualised education in natural settings in interaction with other people.  

The teaching programme and other programmes made for autistic children have used principles from the education of blind children. But I want to suggest that the time is ripe for us to exploit (a) results from research and studies made of autistic children,  (b) our increased knowledge of how cognitive capacity is used to establish social competencies, and (c) the experience gained in education of autistic children.

The blind children, especially the mentally retarded, may benefit from principle founded on knowledge concerning both blindness, autism and mental retardation. The need for stable surroundings, sameness, repetition, time to process the impressions, to build sequential experiences into wholes in context and to learn from experiences in social interaction are among other things basically to have in an educational setting in order to help the individual blind child to learn about social interaction by help of cognitive aids.

*******************************    

Anette Ingsholt

Psycologist, ph.d.


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