autism-like difficulties in children?
Huseby Resource centre
Gamle Hovseter vei 3
I want to start off with this assertion: sighted adults frequently behave in an autistic-like, and in an autism-promoting manner, towards blind children. Here is an example, but related to a sighted child.
The child has visited her grandparents and comes back home with a present from them; a brand new bicycle. Dad comes home from work. “Look, Dad, what they gave me!”
Dad comes into the room, stops with his back to the child and says: “What a beautiful bike! And look at all that extra gear! You are a lucky one!”
It would be unusual, not to say deviant, not to look at the bicycle together with the child. The joint attention appears when both of them look at the bicycle, then at each other, then at the bicycle again. This exchange occurs repeatedly, at the same time as they talk about the bicycle. The child is confirmed and gets attention through two channels simultaneously: sight and hearing (language). A blind child will, as a rule, only be confirmed through the hearing sense, unless the adult “looks” at the bike together with the child by common touch.
The mastering of joint attention is a milestone in children’s development. Little or no ability in this area is a hallmark of autism in sighted people – and in blind people with autism or autism-like difficulties. A disturbing question: can we expect blind children to develop joint attention with us if they usually experience distorted or cut off attention from us?
I will return to this issue, but first I want to repeat a fact that is probably well known to most of you: being born blind involves an extremely high developmental risk.
At Huseby we made a study of all congenitally blind children born in Norway between 1970 and 1985 without any known damage to the CNS, beyond that entailed by the visual impairment.
The number of children was 45.
The children’s development was assessed on the basis of extensive case records.
At the age of 6, the distribution was as follows:
52 % had a normal function
26%: moderately deviant development
22%: strongly deviant development
These figures correspond fairly well with studies from other countries, although most of them are quite old.
All the children in the last group (22%) and a large portion of the moderately deviant ones had enough criteria to be included in the diagnostic category of autism in the most commonly used list of diagnosis (ICD-10). An estimate of 30-40% of the group could meet the criteria of autism. A somewhat different question is whether they “are” autists and what criteria we may use to evaluate if a blind child should be given the diagnosis autism or not.
When we look at the descriptions of the unusual behaviour of the deviant blind children, we find numerous points of resemblance to descriptions of sighted children with autism and to the 12 criteria of child autism in ICD-10.
Stereotypes, echolalia and limited interest in other children are some examples.
What is the relation here between congenital blindness and the type of behaviour frequently found in sighted children with autism?
Out of 12 criteria in ICD-10, the child must have at least 6, and with a certain disrtibution between the three main categories, to be given the diagnosis.
Category A: Social interaction
1. Problems using non-verbal behaviour like eye contact, facial expressions, body positions
and gestures to regulate interaction with others
I have hardly met a congenitally blind person who has not made a high score here, even when we take eye contact away. The behaviour described is heavily dependent on visual model behaviour. The rules of the sighted world are rough and rigid. Pulling your ear lobe is OK, doing the same movements with your fingers 10 cm away from the ear is not OK.
Literature indicates that children with only a slight visual residue have a social communication which strongly resembles that of sighted children.
2. Lack of social or emotional reciprocity.
This has to do with empathy, with the ability to take other people’s perspective, with “theory of mind”.
An American “false belief” (an indication of the ability to take another’s perspective) study from 1995 showed that the blind children in the study were 11 years before they were able to pass a false belief test that sighted children on the average pass around the age of 4. These blind children were very intelligent, above average in their classes. It seemed obvious that lack of sight, not lack of intelligence, caused this vast slowdown in ability to change perspective and understand other people’s way of understanding the world.
One possible explanation:
It must necessarily be more difficult to understand the way other people feel, think and react if you are not able to see their expressions of emotions, expectations and experiences or other aspects of body language. A large portion of this information is silent, and visual.
One interesting result from the study above: the children with a strong visual impairment, but with sufficient sight to perceive facial expressions at a socially acceptable distance, attained “false belief” ability at about the same age as sighted children.
The limited amount of feed-back from other people is probably one reason why empathy seems to be slower to develop in blind children.
3. Problems in developing age adequate relations to siblings, including the mutual sharing of
interests, activities and feelings
One consequence of a limited ability to take other people’s perspective: social situations will easily become unpredictable and frightening.
It will be difficult to understand and react adequately to the behaviour of the other ones.
It will be a lot more difficult to have meaningful conversations and to avoid misunderstandings when you
· Are unable to obtain the visual information on how the other ones behave
and if you also
· have a limited amount of empathy.
4. Does not spontaneously try to share joys, interests or achievements with others (like not showing, bringing or pointing towards objects)
Joint attention is, as mentioned earlier, a problem area in relation to blind children. Sighted children will usually be confirmed through two channels simultaneously. Blind children usually only through one: hearing. It may be compared to receiving the bulk of your confirmation and joint attention from birth through a telephone, or with your parents more or less permanently with their backs turned while talking to you.
Blind children strongly need experiences of being seen not only through language, but also through using our hands together with them and other types of physical contact. If not, they may not have the sufficient basis for developing joint attention. Once more: how can we expect the blind child to develop joint attention with sighted people if they do not experience that we have joint attention with them?
There are four criteria in the area of communication and four criteria in the area of behaviour and interests that will take too much time to elaborate on right now.
Just a few brief examples:
6. Limited ability to start or maintain conversations with others.
Try to have a conversation with three others while blindfolded, and imagine you are five years old. So are the others, but they can see.
The starting and regulation of conversations is mostly done by looks and silent gestures. A blind child will have heaps of experiences of talking out into emptiness because he has not noticed that the others have gone away.
And once again: lack of sight makes it a lot more difficult to obtain basic conversational abilities like turn taking, joint attention, and taking the perspective of others.
7. Stereotyped or repetitive speech, or idiosyncratic language.
Language seems to have more functions for a blind child, in addition to the ones it has for sighted ones. Orientation is an example: “who is here now?”, “where are you now?”, “are you still here?”, “perhaps I can make you stay and keep your attention if I ask you a question?”
The language coming out of these situations may be interpreted as meaningless or “autistic” by sighted people, but may have a profound importance for the blind child.
The questions I have raised so far highlight some of the problems related to using diagnostic criteria made for sighted children to assess autism in blind children. Besides, just about all young blind children (including the “normal” ones) display behaviour that gives scores in the autism list. Examples: repeated behaviour and stereotypes, delays in development of language, delays in ability to take other people’s perspective, unusual gestures and body language.
Most young blind child would meet at least two or three of the twelve criteria just by being blind. How many points would they need to obtain the label autistic, when we know that sighted children need six out of the twelve?
There seems to be a lot in favour of the argument that blind children with autism-related problems is a different group and with different reasons for their strange behaviour. However, it resembles the behaviour of sighted children with autism.
Some authors call autism “mindblindness”. Blind children are frequently called “autistic-like”. Conversely, we might call some of the typical autistic phenomena “congenitally blind-like”.
I put it to you as another assertion that a large portion of the congenitally blind children with autism or autism-like problems would not have had essential problems of this kind had they been sighted. Another portion of these children would probably have been autistic regardless of sight. We are talking about the blind children with neurological problems, frequently not diagnosed, that would have developed some degree of problems anyway.
Congenital blindness causes serious vulnerability regarding development. If the child has a neurological impairment on top of the blindness, the vulnerability may triple, or quadruple, or perhaps a lot more.
Another way of phrasing my assertion: The sum of all the consequences of being born blind, combined with the way sighted people interact with them, may give a sufficient explanation for the development of additional problems that are usually called “autistic”.
Some points of summary so far:
· there is a range of factors related to being born blind, that may contribute to retarding development and promoting unusual beahaviour
· what is often described as problems of understanding in “strange” blind children may just as well be described as problems of mutual understanding. We are part of the problem. Their world of sensations and experiences is so dramatically different from ours that we will often fail to understand them
· the danger of chaos or lack of meaning is profound in blind children. They lose such a lot of information, and they are often difficult to understand and “read” for sighted people. This combination may easily create a confusion that may start self protective reactions. The most serious one is if the child withdraws into his own body and world.
When it comes to the question of starting a diagnostic process or not, the crucial point is to inform the parents and discuss with them the possible advantages and disadvantages of a label of autism for their blind child before doing anything else.
Some possible advantages
· may release more economic resources
· may lead to involvement from professional with experience from the combination of blindness and autism
· may lead to programs better adjusted to the child’s needs
· may give alternative explanations for the child’s behaviour that may be easier for the family to live comfortably with
· may contribute to less feeling of guilt in the parents
· may contribute to the child meeting more realistic expectations
Some possible disadvantages:
· may have a labelling or stigmatising effect. Risk that the child will experience himself as far more “different” than he actually is. There is already a serious problem that these children are frequently being looked upon more as “blind” than as “children”. The danger of the diagnosis becoming similar to the child may increase with “that blind autist”
· the label “autist” may more specifically influence the way other people relate to the child, may unjustly create preconceived notions like “not interested in other people”,
“very difficult to establish contact with”
· may lead to small or negative expectations, self-fulfilling prophecies and ideas that the child has more limitations than she actually has
· may be easier for people around the child give up, based on common assumptions about people with autism
· may limit economic resources based on the argument that children with a better potential for development must be given priority
For some children, based on their parents’ total evaluation and in their particular environment,
there will be a majority of advantages related to a diagnosis of autism. For others the disadvantages will be stronger. In my opinion, there is no general “right” or “wrong” here.
We should avoid an automatic labelling of these children, amounting to 30-40% of those born blind without any known additional handicap, as autists. I know some professionals who do that, but I do not see any of them here.
The most important thing is that as many as possible of these children, with or without a diagnosis of autism, will be offered training and care based on their particular development and needs, and built on the double experience from professional work blindness and autism. The two fields have a lot to learn from each other, to reach two of the goals that are standing out in my mind when we are talking about blind children with autism-like difficulties:
meaning and joy.
Please send comments or questions to firstname.lastname@example.org.