The value (or danger) of labelling the problems of children or adults is often a subject for debate. It seems unlikely that so much progress would have been made over the last 50 years, had not Kanner (and Asperger) put a name to features which seemed to characterize a group of very special children.
PARENTS need an answer to their questions: they want to know the "why" of their child's difficulties and behaviour. Until the child is diagnosed, many parents fear that the problems of the child are a result of bad upbringing and education.
Unfortunately, society seems to confirm all this: many parents of a disabled child - one who looks normal as most children with autism -do face much criticism in the form of shocking verdicts such as : "He is desperately spoiled", "Put him in the cellar, he'll soon toe the line !" or "The only thing he needs is a firm smack on his bottom !" instead of being offered help the parents' self-esteem gets affected and all this gives them a constant feeling of failure which makes them less able to cope with the severe problems they already have to face. "With undiagnosed autism, the parents must walk alone, with weights on both feet" (Mary Akerley).
LABELLING THE DISABILITY of a child is nothing more than giving it A NAME.
That name is important for the parents because it helps them to understand that it is not their fault and it provides them with an answer to that tormenting question of what is going on in their child. Parents are in a funk after getting the diagnosis of autism for their child's difficulties, but in the meantime it is a first step of trying to come out of it.
The label can be considered to be a new starting point: if parents know what "it" is, they can look for professional help for their child.
"Families with a child who suffers from autism often say, several years after the first evaluation which led to a correct diagnosis of "autistic disorder" or "autism" that the day on which they received that information has remained in their minds not as a day of doom but rather as the point of departure for realistic hope..." (Christopher Gillberg)
PROFESSIONALS too need to know what makes people with autism so special in order to help them, since people with autism need special education and a different approach. Professionals have to know the child's problems and need information about the handicap in order to select the correct intervention.
For some PEOPLE WITH AUTISM it is also important to know the name of their problems; they feel there is something wrong with them, and they don't know what it is. They have a right to know the name of the disability and its limitations in order to know why they have to face so many difficulties.
"That diagnosis was to be the force that would change my life. Now that there was a name to that monstrous problem 1 had been carrying around for years, maybe 1 would find ways to eliminate at least some of the odd and socially unappealing behaviours. Over the ensuing months, I became calmer and happier..."(Anne Carpenter)
I fully agree with Mary Akerley : "LABELS CAN BE LIFESAVERS". The label given to a child's disability should dictate what KIND OF HELP the child gets.
On the other hand, it is a pity that KANNER SINGLED OUT ONE OF THE CHARACTERISTICS OF THE SYNDROME AS BASIC TO THE OTHERS IN ORDER TO LABEL IT.
The word "autism" in its limited sense of "turned into oneself" does not say anything about the set of THREE CORE IMPAIRMENTS (Wing's triad ) people with autism suffer from.
The interpretation of the word autism in a narrow sense unfortunately still holds sway over the diagnosis and treatment of children with autism and may have SERIOUS CONSEQUENCES.
Autism is a very confusing handicap and especially the ambiguity of the handicap is very difficult for parents: many children with autism don't have the appearance of handicapped people, the "pervasiveness" of the disorder cannot be seen on their face. Autism can be found on all levels of intelligence and the handicap exists in several gradations and variations. Because of the fact that each person with autism is "unique", many parents don't even recognize their own child within the diagnosis of "autism".
Unfortunately even some professisonals often make different, contradictory and confusing statements or findings. Some terms are very confusing : e.g. "PDDNOS", "Atypical Autism", "Autistic-like", "Autistic traits", "a touch of Autism".
An illustration of this "CONFUSION OF TONGUES": DSM IV defines PDDNOS (including Atypical Autism) in terms of what it is NOT instead of providing with clear diagnostic features. "This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and non-verbal communication skills, or when stereotyped behaviour, interests, and activities are present, but the criteria ARE NOT MET for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes "ATYPICAL AUTISM"- presentations that do NOT meet the criteria for Autistic Disorder because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these."
It RESSEMBLES autism, but it is not autism. Unfortunately, this is the way in which many parents are informed about the handicap of their child. Some of these confusing and even DECEPTIVE terms may be used in some cases in order not to worry parents, or to refer to children who at first sight don't seem to fit into the image of the Kanner stereotype of autism (they may be socially interested though odd in interaction, they may have many words though poor communication skills, or they may be more able than most autistic children ... ).
Parents may like the term "PDDNOS" since it sounds less threatening than the term "autism" and although the term "atypical autism" reveals much more of the handicap than the term PDDNOS, for many parents it may be a relief that the child does not have autism since the emphasis has been laid on "atypical" instead of on "autism".
What's in a name ? What can be understood by the term "typical autism" "atypical autism" and even "typical atypical"?
People tend to think that the so-called typical atypical child would take more contact than the typical autistic child. Within the group of persons with autism Lorna Wing makes a distinction between "aloof", "passive" and "active-but-odd" types. In the definition of autism in DSM IV, we do not find that autism is characterised as a lack of social contact but as a "QUALITATIVE impairment in social interaction..." the quality of the social interaction is different.
Moreover, we have to keep in mind that people with autism have their own temperament as well as ordinary people have.
Atypical children are often described as chaotic, unpredictable, active-but odd, whereas the typical autistic children are more related to quiet, passive persons. These kinds of differences may be due to differences in personality and character rather than to different subcategories within the autistic spectrum.
Another misunderstanding concerning the typical atypical child has to do with communication : many people think that if the child speaks, if the child is verbal, he cannot be "typical autistic". Again I would like to refer to the definition of autism in DSM IV which speaks about "QUALITATIVE impairments in communication..." communicating is much more than speaking !
Do children with atypical autism have more fantasy than children with typical autism ? I think there is a relationship between the mental development of the child and a statement like this. More and more highfunctioning (intelligent) children get a diagnosis of atypical autism ... though all people with autism whether typical or atypical only have limited imagination and lack flexibility and creativity.
Another so-called characteristic of atypical autism is that these persons are much more "dependent on other persons". Often people with atypical autism do not get the necessary clarification and visualisation they need. As a consequence of this they ask questions and become very dependent on people, ... everyone who has problems with meaning and who doesn't get visual and concrete information would react like this... too often they are over-estimated ... as a result of being diagnosed as atypical !
Even parents may doubt the necessity of specific education for their child with atypical autism : "he does not belong in the classroom, since he is not a "real" autistic child...", "he is atypical"... and by only using the word "atypical" (instead of "atypical autism"), gradually the word "autism" seems to disappear ... no autism, no special needs ???
Many misunderstandings come from a too narrow interpretation of the word "autism" itself.
Typical Autism is too much understood in terms of the child who is turned into himself, the child who is not able to talk, who has much stereotypical behaviour and a severe mental retardation. Only a limited number of persons with autism fits into this image.
If the child speaks, if he is socially active or if he is not mentally retarded his problems are all too quickly diagnosed as "atypical autism" or "PDDNOS". Due to the fact that autism is understood in a narrow sense, children get more and more a diagnosis of "atypical autism". I think there is a DANGER in this way of thinking : INSTEAD OF WIDENING AND EXTENDING THE NARROW IMAGE OF "AUTISM", WE ARE DOING THE OPPOSITE AND IN THIS WAY OF THINKING "TYPICAL AUTISM" GRADUALLY BECOMES "ATYPICAL"!
Unfortunately by using these "deceptive" terms we are maintaining the narrow view of what autism is about and THE CHILD SO LABELLED MAY NOG RECEIVE THE EDUCATIONAL RIGHTS WHICH A DIAGNOSIS OF AUTISM COULD OFFER !
Nowadays, there is a tendency to look for differences between "atypical" and "typical" autism instead of emphasizing the SIMILARITIES. The basic difficulties all people with an autistic spectrum disorder deal with are the same.
When we talk about "related disorders", we have to be aware of the fact that "related" refers to the CORE PROBLEMS OF AUTISM, namely the qualitative impairments in social interaction, communication and imagination.
In spite of many individual differences all these people need a similar type of educational approach based on individualisation, visual support, predictability and continuity.
"...if someone suffers from the triad- in any form- his personal development is seriously affected. People with this disorder find ordinary life difficult, confusing and frightening. They are vulnerable and escape into a range of activities that is limited in order to find safety and predictability. They need similar help with education, recreation and employment. They are dependent on others and must be supplied with an external framework in which structure and organisation make their lives a little clearer and easier."
"lt is justifiable for scientific researchers to look for specific subgroups and to formulate strict criteria. But it is not justifiable to cut off children within the triad from certain forms of assistance, suitable special education because they do not conform to the classical definition of autism, when this is precisely the sort of help they and their families so badly need." (Lorna Wing)
Classification for RESEARCH OBJECTIVES is not similar to that needed for EDUCATIONAL INTERVENTION!