More Children are Diagnosed as Autistic
Autism is a Communication Disorder
Autism is a disorder of variable severity that includes profound communication difficulties and puzzling/ challenging behaviours.
The diagnostic criteria are the 'Triad of Impairments' (DSM IV 1994/6), i.e. problems with
* Social interaction and relationships, e.g. withdrawn, aloof, indifferent to people
* Social communication , i.e. difficulty with verbal and non-verbal communication
* Imagination , i.e. difficulties with playing and symbolic functioning, replaced with
Repetitive Behaviours and Resistance to Change in Routine
The Sense of being a Person
It may be argued, however, that a person who has problems with relationships and social interaction will naturally find both communication and imagination difficult, i.e. that we are not really talking about 3 different criteria.
An alternative way to describe and understand the autistic child's core-problems is to characterise autism as
* a severe social impairment in early childhood (which while the core symptom of autism is however not its cause), which seems to be due to
* a severe disorder of intersubjectivity, i.e. a lack of a sense of being a person as well as of perceiving others as human beings, and
* an impairment of the normal sense of emotional curiosity about + desire for relationships, i.e. relating to a person as a source of sensory stimulation rather than a living being like oneself.
Autism: One Word - Many Meanings
Despite there being one single word, which seems to suggest that we know what 'autism' is, it is in fact far from clear what the precise definition is and what exactly people mean when talking about 'autism' or 'autistic'. In fact there is no overall agreement between the different schools of thought that drive the various research, assessment and treatment approaches about 2 fundamental questions:
a) What exactly is the nature of the core impairment?
b) Where is the core damage located?
The controversy, which makes people's blood run so hot that it is hardly ever discussed openly or in public, centres around whether autism is predominantly a physical/ organic problem involving some form of physical damage to the brain, or whether the main problem is in fact to do with certain processes in and with the development of the mind, and therefore above all a psychological, and in fact an Infant Mental Health problem.
Theory of Mind
Theories of cognitive deficit assume that the child exhibiting autistic behaviours is born incapable of a ‘theory of mind’ (Baron-Cohen 1993). But studies of early infant development suggest that this is in fact a core development of early childhood, which suggests that there is great scope for change with sensitive and responsive attention from the baby's main carers. In Greenspan's developmental scheme, a lack of 'theory of mind' represents an as-yet unattained stage rather than an innate deficiency (e.g. Greenspan 1998, 2003, Hobson 1993, 2004) which has the potential to grow.
Babies with Pre-autistic features:
We now know from infant research, that the brain's plasticity, i.e. its potential for growth and development, is at its peak during the first 2 years. This means that the earlier intervention can begin, the greater the chances of diverting and redirecting deviant developments onto a more healthy course. This line of thinking encourages a diagnosis of 'pre-autistic' or 'autistic features' in the first months as, for example, in Normandy/ France, where the general aim is to diagnose babies 'at risk of autism' or 'with relationship problems' before the age of 12 months, in order to then focus attention on helping the parents to learn more about their child's unique communicative needs and how they can best support their child's development towards as normal a course as possible (Delion 2000, Acquarone 2004).
Causes of Autism:
What causes autism remains, despite decades of intense research, an unresolved puzzle, resulting in an abundance of many compatible as well as conflicting approaches, methods, theories, research-projects, factions and camps. Among others there has been much debate concerning contributing factors due to vaccine-damage, notably MMR, and related digestive problems affecting nutrient-supply to the brain. There is growing concern as to the devastating silencing of ordinary family-conversation due to constant background-TV and increasing computer and mobile-use, as well as of food allergies to milk and wheat-products, to artificial food additives, preservatives, sugar and processed foods.
How is Autism Diagnosed?
Diagnosis of autism is currently made almost entirely through brief clinic-observations of the child's behaviour and formal tests by health professionals, usually with a devastating prognosis that is deemed more 'realistic' than a hopeful one, despite the fact that
a) there is to date no medical evidence or conclusive tests for autism, and
b) doctors are not usually trained to specialise in understanding the difficult behaviours and processes that underlie problems with communication and relationships.
Rather than regarding the child's difficulties in terms of a wide range of developmental processes which are specific to each individual child and the socio-emotional interactional situation of each family, diagnosis tends to focus on what autistic people have in common and the supposed linear nature of the problem. The trouble is, of course, that a group model based on presumed characteristics shared by the entire autism-group runs a high risk of becoming a self-fulfilling prophecy.
Is Autism a 'Thing' a Person 'has'?
Although there is no conclusive evidence of physical damage, and it remains unclear whether this is believed to be located in the child's body, mind or brain, whether due to bio-chemical, neurological or information-processing processes, those following a medical model (which is in effect a 'deficit model'), including most of the speech therapists I have met, insist that there 'must be' some such deficit. They then go on to behave as if this belief were a fact, i.e. that autism is a 'thing' the person 'has', a definite defect that is just not measurable with present technologies.
A Life-Sentence or Reasons for Hope?
During the so-called 'Disclosure Interview', which took place at their third visit to the Child Development Centre, the paediatrician who had assessed and diagnosed the child during 2 visits to the clinic explained to the parents that 'Autism is a life-long disability, which means that your child will have learning difficulties and probably never be able to live independently', despite the fact that the child was only just 2 years old.
The reason doctors tend to give, is that they don’t want to raise false hopes in parents. But are pessimism and discouragement really more realistic than hope and encouragement? As Raun Kaufmann, once a severely autistic little boy, now a trainer of parents with autistic children in America , said: 'How is a life-sentence better than an out-stretched hand?'.
There is NO Evidence that Autism is always a Life-Long Disorder
The mother was hesitant and surprised, when I spoke to the mother later on about evidence from infant-research of the enormous plasticity of a baby's brain, and a child's as yet uncharted developmental potential for brain and mental growth, depending on early intervention, especially at home and through parental involvement, and other remedial experiences. We don't know how much change may be possible!
Normal Functioning with only Half a Brain
There is the story of the 7-year-old who, despite having half her brain cut out aged 3, was normal in her developmental milestones, fluent in 2 languages and attending mainstream school, even though the speech-centre is said to be located in the half of the brain that this child had lost. How can we make life-long predictions of such a young child? Who do we think we are? God?
Early intervention is universally seen as crucial. The important question, however, is about the goal of early intervention. Should it focus on compliance and externally observable behaviour? Or is something much more fundamental at stake, - namely to focus on supporting the child's development of a secure sense of self, rather than on teaching 'splinter skills', which the child may be unable to generalise, because of his underlying lack of a secure sense of self?
The label 'autism' has become a much coveted diagnosis, as it promised the highest level of educational support for a child 'included' in a mainstream school, or in a small class in an autistic unit/ school with high child-adult ratio and additional specialist input (e.g. speech therapy, music therapy, etc.). Here the most commonly used approaches are PECS (Picture Exchange Communication System), the simplified sign-language Makaton and TEACCH, a visual system for providing a highly structured environment.
Much of autism-specific work with children that is offered by the statutory sector is school-based with a focus on compliance and on training the child to behave in more socially acceptable, and less autistic, ways and to act more 'normal'. The underlying assumption seems to be that in this way it may be possible to 'get rid of', at least some of, the autistic behaviours, and that more 'normal' behaviours can be taught.
Mainstream intervention strategies tend to concentrate simplistically on the initial problem areas observed during diagnosis (motor, sensory, behavioural, language) without differentiating between primary and secondary symptoms. Withdrawal, avoidance of eye-contact, echolalia, self-absorption, lack of play, hyperactivity, repetitive behaviours, perseverative behaviours, self-injury are often secondary symptoms, which the child has acquired because of problems with motor planning, sensory modulation, auditory processing, metabolic and nutritional difficulties, or attachment and relationship problems, which are the primary symptoms.
Autistic and Non-Autistic States of Mind
But everyone who has known an autistic child well enough has had the experience that there are times, or at least moments, when even the most autistic child seems perfectly normal, when he surprises us with an unexpectedly appropriate look, gesture, word or response.
The fact that he is sometimes capable of this would appear to be in contradiction with the view of autistic behaviours as due to a permanent organic damage or deficit: if he can sometimes do it, then the underlying brain- or mental capacities cannot be absent or missing like in certain forms of brain-damage.
If he can do it, but often doesn't, then we must surely treat him not as a child who because of his autism cannot be expected to do it, whatever it is, but as a child who needs help to grow and strengthen the weak connections or parts of his mental functioning and his motivation to keep on trying. In my experience the autistic state of mind in fact comes and goes, and autistic children are autistic some or most of the time, but every autistic child has intact non-autistic parts to their personality (Janert 2000).
When States become Traits
‘Parents may inadvertently contribute to this downward cycle by second-guessing their child’s needs, so that neither child nor parent is aware that an opportunity for a potentially more lively engagement has been missed. Or their feelings of helplessness in the face of their child’s indifference have meant that the child is left too much to his own devices. When not addressed and treated, personality features of impatience and intolerance are in danger of becoming embedded into character. Then states can become traits. In some cases this may lead to a personality disorder in the person with autism.’ (Alvarez/ Reid 1999).
A Developmental Relationship-Focussed Approach to Autism
Approaches that are not based on membership to a presumed group of 'autism' (e.g. Alonim (Israel), Greenspan (US), Acquarone (UK), Alvarez (UK), Houzel (France), etc.) view autism as a multi-system developmental disorder and a form of PDD (Pervasive Developmental Delay). The severe problems in relating and communication may be a result of severe constitutional and/or regulatory problems. The most typical symptom in young children, who get diagnosed with autism or PDD (Pervasive Developmental Delay), is their lack of a complex sense of self, which develops normally around 13-18 months out of the infant's initially still fairly undifferentiated emotions and affect.
The Emotional drives the Cognitive
According to the sophisticated developmental model by Greenspan it is not language that differentiates us from our animal ancestors, but the wide range of affect (Greenspan 1998, 2003). Without the complex emotional exchange of feelings, meaningful symbolic developments like play and language cannot develop, as without being an intentional self, the child cannot give meaning to language. It is the emotional that drives the cognitive, not the other way round, and it is feelings and emotional processes that hold together the different areas of development (Panksepp 1998, Schore 1994).
50% of these Children are Ready to take off!
Proponents of a holistic perspective, compared to the medical deficit model of autism, are much more optimistic about these children's potential for emotional and social growth. If, instead of the rigid and often developmentally inappropriate behaviourist interventions, we can offer the young autistic child intensive attention that focuses on relationship-building and the development of his sense of self (the concept of the self does not exist in the behaviourist models!), through interventions based on the child's individual differences, the family and cultural patterns of the child's environment, then about 50% of these children are ready to 'take off' (Greenspan 1998), meaning that they can be helped back onto a normal developmental path, - incidentally the same figures as those quoted as success rates by the strictly behaviourist ABA and Lovaas schools.
Always assume the Best and never assume a Ceiling!
Greenspan encourages parents to always assume the best, and never to assume a ceiling for their child's developmental potential. But 'if the child is not helped to find manageable, rewarding interactions, he or she will begin to 'shut down' the baffling environmental input and a form of self-imposed sensory deprivation will begin to set in.' (Greenspan 1998).
Different Kinds of Autism:
We are probably also not only dealing with different degrees of severity, but also with different kinds of autism. Some autism seems to stem from some form of delay or deficit. Sometimes a child's autism seems to be a defensive self-protection against actual or imagined trauma. In other children the autistic symptoms seem to be more of a disorder, which, if left untreated, can lead to deviant personality-structures. The problem is always, as with all mental processes, that the child's non-autistic part may use, misuse, enjoy or exploit the autistic symptoms, or it may oppose them and make efforts to reduce their influence.
Over the past years, autism has become increasingly well-known to the general public with sharply rising numbers of children diagnosed as or showing autistic behaviours. It is unclear to what extent this is due to a real increase of autism or an increase in diagnosis (200 even 700% in some areas), and the general agreement of 1 in 150 children as on the autistic spectrum (Fombonne 2003, Baird 2004).