An overview of a condition that all too often results in social isolation
Autism – a Challenging Disorder
“To talk of a cure for any of the ASDs is inappropriate. ASD is not a disease, but a developmental disorder”
April 2 is World Autism Day and the date shines an important spotlight into a condition that can all too often result in social isolation for those who experience it. Autistic Spectrum D isorder (ASD) impacts on individuals to varying degrees, with some children who have been diagnosed with the condition facing developmental delays in acquiring social and language skills. Others may not develop these skills at all and a significant consequence is that many children with ASD find it extremely difficult to interact with other people and to relate to their emotions. Caring for a child with autism can be an extremely challenging commitment, as the condition is one that can affect behaviour considerably. A child with ASD will usually exhibit certain idiosyncrasies, such as a fixation with certain types of objects or things, and will often experience other learning impairments. Each child who is ultimately diagnosed with an ASD will have a combination of these difficulties and it is this combination that defines where on the autistic spectrum they fall. Some children may have mild autism, characterised by a good vocabulary, but may still have difficulty with communication. This is typical of Asperger’s Syndrome. Others may have severe learning difficulties and also very limited communication, such as with Pervasive Developmental Disorder.
Autism was first described in 1943 by Leo Kanner, an Austrian psychiatrist working in the USA. He detailed the cases of 11 children he had been asked to examine and categorised these eight boys and three girls as having idiosyncratic behaviour and characteristics that were completely different to any children he had previously seen. He described the symptoms as “congenital infantile psychosis”, which became known as “early infantile autism” or “Kanner Syndrome”. Kanner recorded that the parents of these 11 children referred to them as having always been “self-sufficient”, “like in a shell,” “happiest when left alone” and “perfectly oblivious to everything about him”. As such, Kanner was the first to describe this developmental disorder comprising severe impairments in communication and language, social interactions, play and behaviour.
There have been several theories (and as many controversies) proposed as to what causes ASD. Very early ideas focused exclusively on the parents of the children, with notions of the ‘refrigerator mother’ being put forward. This concept suggested that mothers who did not bond appropriately and timely with their children were the main cause, premised on what Kanner had said about the parents of his 11 cases; “there are very few really warmhearted fathers and mothers. For the most part, the parents, grandparents, and collaterals are persons strongly preoccupied with abstractions of a scientific, literary, or artistic nature, and limited in genuine interest in people. Even some of the happiest marriages are rather cold and formal affairs.” Thankfully, this theory that parenting was to be blamed for causing ASD has since been exposed as wholly inaccurate.
No less controversial was the more recent theory that autism was linked with the MMR (measles, mumps and rubella) triple vaccine. Propelled into the media as a breakthrough into understanding how autism was caused, Andrew Wakefield, a British physician, published results in 1998 in an eminent medical journal claiming that autism was clearly linked to receiving the MMR vaccine. However, research conducted since Wakefield’s study was published has failed to replicate his findings and the data on which his original findings were based have since been shown to be severely flawed. In January this year, Dr Wakefield faced charges of professional misconduct by the British General Medical Council, which ruled that he had “failed in his duties as a responsible consultant” and that he had acted “dishonestly and irresponsibly” in his controversial research.
Experts now believe that there are potentially several different reasons why ASDs develop. One theory suggests that the way the brain grows before, during and after birth may lead to an increased likelihood of an ASD occurring. It has also been proposed, from our accumulating knowledge of genetics and the way in which specific genes can lead to the development of certain illnesses and disorders, that the development of autism may be linked to the genes that a child inherits from their parents. However, identifying a single exact cause has not been possible. What is most likely is that ASDs develop due to a combination of several factors involving genetic inheritance, pre and post-natal brain development and environmental factors.
Autism or an autism-related disorder is usually diagnosed in childhood and almost always between the ages of two and three; although some disorders on the spectrum may not be diagnosed until the child has started school. Despite the condition having been first described by Kanner in 1943, formal diagnosis within the Diagnostic and Statistics Manual of Mental Disorders (DSM) — the standard reference by which psychological disorders are diagnosed — did not occur until its third version in 1980. However, there has been good progress and development in the diagnosis and treatment of autism in recent years. The most recent version of the DSM cites five distinct diagnostic conditions. They are: Autistic Disorder, Asperger’s Disorder, Rett’s Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder. A diagnosis is made based on the observations of the specialist doctor or paediatrician regarding the behaviour, communication and overall development of the child. There are no medical tests that can be undertaken at this time to hasten a diagnosis being made. Instead, each of the diagnostic criteria is considered against the observations made of the child. When autism is suspected then usually a referral is made to a specialist centre, where a range of health and allied professionals can assess the child. From this assessment specific needs and levels of support can be determined.
Prevalence rates for ASDs in the developed West suggest that nearly 1 in 100 children is diagnosed with autism or an autism-related condition and that it is four times more common in boys than girls. There is little data readily available to ascertain the prevalence within the UAE, but with several specialist autism units and charitable foundations across the emirates dedicated to supporting people with ASDs and their families, it is clear that there is both a need and a desire for such facilities. To talk of a cure for any of the ASDs is inappropriate. ASD is not a disease but a developmental disorder; high-functioning adults who have an ASD write tongue-in-cheek of attempts to cure ‘neurotypical people.’ Instead, the main form that support for the autistic child takes is one of special education that aims to meet their specific needs and is likely to include social skills and behavioural training. As each child will manifest unique elements of communication and behaviour specific to his/her disorder then his/her educational plan needs to be tailored to reflect these often-complex needs.
Autistic spectrum disorder (ASD) impacts on individuals to varying degrees, with some children who have been diagnosed with the condition facing developmental delays in acquiring social and language skills.”
While many individuals with autism are still segregated from their peers, e.g. in regular school classes and community settings, there is a growing body of evidence that suggests that higher-functioning children experience greater benefits when they are fully integrated into their cultural, social and educational systems. This current movement toward integration, combined with early intervention, is a step in the right direction toward improving the quality of life for those with autism, but this must be made on a case-by-case basis commensurate with their individual needs. The attempted integration of a child with severe autism can be counter-productive, unless this activity is carefully controlled. Inclusion should be more about appropriate provision than location, yet this is often difficult to achieve.
Possibly one of the most famous autistic characters to be portrayed in film media is that of Raymond Babbitt, the high-functioning autistic man played by the actor Dustin Hoffman in the 1988 film The Rain Man. This was possibly the first time that autism and the idiosyncrasies of autistic behavior had reached a mainstream audience and the film served to dispel many myths surrounding ASDs. Likewise, the more recent English language novel by Mark Haddon titled The Curious Incidence of the Dog in the Night Time tells the story of a 15 year old boy who has Asperger’s Syndrome and provides a fascinating insight into the behavioural nuances and talents of a high-functioning child. Both of these stories, whilst enjoyable in their own right, also serve to educate about these often-misunderstood disorders.
Whilst the focus on autism is almost always to those individuals with learning difficulties and severe communication problems, it is worth considering, as this is a spectrum disorder, the upper end of the continuum. If we look closely at the phrases that Kanner reported from the parents of the children he observed, you can see that they involve descriptions of isolation. We can see that they can also apply to the stereotypes of scientists dedicating their lives to finding cures for diseases while locked away in a laboratory, or colleagues who are driven by their work and apparently unaware of anything else around them, or friends who we admire for being really intelligent but don’t seem to have a clue in social situations. And surely we all have our very own idiosyncrasies that charm or irritate our loved ones. Would these behaviours and communication difficulties also warrant a diagnosis of autism; albeit at the very upper end of the spectrum?
As future research findings into ASDs become available, it is hoped that the complexity of these disorders will unravel and that evidence-based treatments and improved quality of life solutions will be found. In so doing, it is hoped that we will have a better understanding of the challenges that face individuals diagnosed with an ASD, ultimately leading to inclusive communities that are better placed to support them.