I receive telephone calls from some Paediatricians, Developmental Paediatricians and Family physicians to discuss a dilemma, which they encounter in their work place.
The primary diagnosis which is commonly made, when a child has a cluster of symptoms of dysfunction in language, social skills, behaviour, learning, class room behaviour and scholastic skills is 'Autism', so much so, 'autism' is the commonest developmental challenge in children with mushrooming of service providers.
During my forty years of engagement in child development and developmental neurology starting in 1983, I came across instances of how children with Developmental Language Disorder, Cognitive deficits, Mood disorders, Obsessive and compulsive behaviour, Bipolar disorder. undiagnosed moderate hearing impairment, Cortical Electrical dysfunction, Dysmorphic syndromes, Post Traumatic Disorder, In born errors of metabolism, severe attention deficit or hyperactivity or learning difficulties and few other conditions were thought to be autism, as those children had some features common with children who had autistic behaviour.
The causal pathway for any developmental dysfunction can be initiated by genetic, intra-uterine, perinatal events or neurological insults suffered during infancy and toddler years. When this gets compounded by co-morbidities and confounders, the clinical behavioural outcome is an expression of the cumulative effect of the past and current neuro-biological events of infancy and toddler years of a child.
A psychiatrist, Dr Eugen Bleuler in 1908 described a patient of Schizophrenia being 'autistic' due to 'morbid self absorption and withdrawal within self '. The Greek word 'autos' meant self and the word was used to highlight the 'self-absorption'.
Dr Leo Kanner in his original description in an article on Infantile autism published in 1943, presumed that if the home environment made a child to suffer from separation anxiety or dysfunction in attachment behaviour, a child is likely to have learning challenges in language, communication, behaviour, and cognitive functions.
In the 1940's, Dr Hans Asperger and Dr Leo Canner were working separately on two categories of children- Asperger on very able children and Kanner on children who were severely affected behaviourally.
The word 'autism' in greek suggested 'self absorption'. The 'frigid state of mother towards her child was a factor that Dr Kanner considered to be a trigger for infants developing autistic behaviour.
From that initial impression of Autism Spectrum disorder, as it is now known, there are direct or indirect evidences to suggest this to be a, Neuro-biological-behaviour disorder with some genetic contribution, or chromosomal aberration, structural changes in the brain with smaller or larger head size with changes in the cortex, corpus callosum, amygdala, cerebellum; metabolic pathway dysfunction with variable excretion of some metabolites, changes in the absorption of food and processing of it from the gut, intolerance to some food, food additives or preservatives, dysfunction in neurotransmitter, sleep-wake dysfunction...... this list of the different neuro-biological factors observed in children is longer in the causal pathway of Autistic Spectrum Disorder !
Now, as this Developmental Communication Dysfunction has multiple causal pathways and is thought to be a spectrum of dysfunction of behaviour, language acquisition, communication, cognition and social skills, why is the term 'Autism', which represents only one clinical symptom of 'self-absorption' still used to describe this clinical spectrum ?
I wish the leadership in the DSM group and the interdisciplinary team of specialists who are involved in the diagnostic and developmental appraisal of children and in offering rehabilitative programme would sit down to revise a misnomer, by which this clinical spectrum is still described! The current level of knowledge about this condition merits a better diagnostic label, which explains its Neuro-biological casual pathways.
The word, 'autism' when suggested to parents as a diagnostic label, elicits fear, anxiety, sense of hopelessness, a bleak future for the child and a life long disarray or confusion.
I know of children, thought to have Autistic spectrum disorder moving out of that spectrum after a while, with treatment of the co-morbidities; there were some children who recovered enough to go through learning although social and communications dysfunctions stayed on; and there were some who entered adulthood, who would need assisted learning and living.
It is time the word 'autism' gets dropped and a broad terminology is evolved which is child and parent friendly and representative of the neuro-biological spectrum of the dysfunction.
Let me say something about a bird, Greater Coucal (Crow Pheasant), to bring a parallel about the need to revise the terminology of a Neuro-biological dysfunction in children, in the light of what is reflected above.
A greater Coucal is a bird which visits our garden regularly. It has a different behavioural spectrum than most other birds, who visit our garden.
It is a shy bird, clumsy in movements, flies only short distances and has a deep bird call. It is found moving about in the lawn of the garden, looking for its feed of insects, flies and seeds. It walks on the ground by hopping, and sprints while hunting for food. It flies slowly, heavily and the wing beating gives a clumsy look. Its bird calls are deep, short and non repetitive. The male bird builds the nest in thick vegetation during the post monsoon season. This species of birds steal the eggs of other birds and nestlings. They are loners without overt outward indication of awareness towards birds of other species.
What is observable is its extreme private behaviour even during courtship. It was only recently I noticed it when the pair below was in the cover of a foliage, while becoming a pair.
The habit and behaviour of a Greate Coucal make it different from other birds. However it belongs to the avian family. Yet we receive this bird without attributing any of its behaviour to be pathological. Theirs is a different way of behaviour and existence.
It is for this cause, I write this blog post. The 'stigma and sorrow' associated with the use of term autism, used since 1943, which was necessary then, to highlight the symptoms of 'self absorption' of a child or the 'frigid behaviour of a mother' can be avoided in the light of the advanced knowledge we now have, about this neuro-biological-behavioural dysfunction, being a variation from the usual with 'islands of abilities' submerged in what appears to be a neuro-developmental dysfunction.
It is for the professionals to come to a consensus, that self absorption is an incidental issue in children with Developmental Communication Dysfunction ( I use this 'label' for want of anything else. I am unwilling to stay with the term 'autism' in any form! ).
I would have welcomed about 2800 children with Developmental Communication Dysfunction during the 40 years of my clinical work. The twenty thousand or more photos of such children in my collection and some data about the initial presentation of the symptoms of these children, make me suggest that self absorption was a feature only in a small group.
Even in that group, when an opportunity was offered through augmented communication, interactive play and home based structured play based learning, most children indicated a responsive behaviour in six to eight weeks.
I made an observation after the COVID season (2019-2022) that 65 percent of pre-school children, who visited us and who had a deviant language acquisition and communication intent and content, was exposed to visual media with watching cartoons in a different languages other than the mother tongue or the language spoken at home. The average time spent was about five hours during the day. The recent reporting of increased occurrence of language delay and behavioural mannerisms might be related to this.
If a one year child who normally would have lots of interactive time between members of the family were to spend about five hours watching videos, which have no resemblance to events in the home environment, it is likely that the normal language and behavioural development would get stagnant or regress. A toddler or pre-school child processes information when visual, auditory, motor, sensory and social pathways are integrated for the child to have a pleasant experience. Instead what viewing the TV offered a child was a fantasy world, where real time experience did not take place for the child to feel, sense and interact with.
To attribute the deviant behaviour of such toddlers to be 'autistic' is another impulsive diagnostic trend. It looks like that the professionals are in a hurry to gravitate towards the diagnosis of autism, when a child does not fit into any other diagnostic category. It only suggests that we need more observation, investigation, case control studies and analysis of multi centric data to understand more about the effects of adverse factors impairing the development of cognitive, behavioural and communicative functions in pre-school children.
I found during the analysis of behavioural screening done in 270 pre-school children at six week intervals, who had vitamin D deficiency, improvement after supplementation in the behavioural scores up to fifty percent. Some pre-school children needed correction of Zinc deficiency, Anaemia and treatment of Cortical electrical dysfunction, who too showed indications of improvement in language and behavioural development. Although it is a limited data, too inconclusive to make any generalisation, it suggests that the Neuro-biological matrix of a pre-school child with delay in the development of language, communication, behaviour and pre-school skills might have a multi-factorial origin.
What is hither to unknown or cannot be known by a casual approach does not merit pushing such children to the spectrum of 'autistic' behaviour profile.
That being the case, I find it difficult to accept the perpetuation of a diagnostic classification of a neuro-biological dysfunction based on a symptom of 'self absorption', which is less common than the other neuro-developmental needs of a child, showing 'autistic' behaviour.
It is like labelling the Greater Coucal as shy, slow, less social and weak in flying. They are facts, but what is evident about the bird is its aesthetic and immaculately groomed body, visually appealing colour complexion, quiet temperament and harmless behaviour.
During my experiences with many children who have Developmental Communication Dysfunction, I watched their unusual residual abilities- scholastic skills in some domains like design, drawing, assembling, visual art, computing skills, memory of figures, number, images, etc. and learning interest when learning was made a fun by using music, dance, movements and introducing activities of interest such as sports, games, exploration of the environment and individualised plan for home based chores.
To forget these abilities and prospects and subsume them in a one-sided diagnostic label, to me brings a reduced view of their abilities. This is a disservice to them and their families.
A lot more diagnostic search is required to find the spectrum of causal pathways that lead to Developmental Communication Dysfunction, and to evolve developmental pathways, learning pathways, and parenting pathways to bring wellness to such children.
Until then, it is the right time to dissociate from using the outdated diagnostic terminology, which still labels them based on the first impressions of Dr Leo Kanner, to whom we owe a lot for showing the way to researchers, who came after him!
The beauty is in the flower; it is for the beholder to be drawn by that!
That is my hope- that all children with Developmental Communication Dysfunction will be received by their parents and professionals just as they are, bearing in mind that they wait for the prospects and t better future to unfold before them.
M.C.Mathew(text and photo)
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