Positive trends in the treatment of autism

Dr N P Karthikeyen & Subathra Jeyaram

Autism is a developmental disability, the result of a neurological disorder that affects the functioning of the brain. It is characterised by profound disturbance in the emergence of social relations, apparent as early as the first months of life and almost always by three years of age. People with classical autism show three types of symptoms:

• Impaired social interaction
• Problems with verbal and non-verbal communication and imagination
• Unusual or bizarre activities and interests

Autism is often referred to as autism spectrum disorder [ASD], meaning the symptoms and characteristics of autism can present themselves in a wide variety of combinations, from mild to severe, and no two individuals with autism are same.

The National Institute of Mental Health, US, report an incidence of 2 to 3 ASD children per 1000 children. There are about 1.5 million individuals suffering from autism in USA alone. Statistics also indicate that the incidence is increasing alarmingly with millions suffering around the globe.

However, there are no reliable statistics pertaining to our country, as we do not have any central referral institute or reporting body. Anecdotal reports suggest an increasing rate of incidence of autism on par with the rest of the world. The need of the hour is to create a positive awareness about this condition in our country among parents and medical and non-medical professionals.

It will be interesting to learn about the untiring efforts of people to change the concept from a psychiatric illness to a neuro-biological disorder. The parents of autistic children have spearheaded the movement into positive scientific research. The legacy still continues today.

A look back into history

In 1943, Leo Kanner, a John Hopkins university psychiatrist identified a group of 11 children exhibiting a set of unique behavioral characteristics and identified autism as a distinct neurological condition. He named the syndrome early infantile autism because it usually appeared sometime during the first three years of life. Before 1940’s, children who are now called autistic were labeled emotionally disturbed, schizophrenic or psychotic.

Psychoanalysis, the method Sigmund Freud developed for the interpretation and therapeutic treatment of psychological disorders, had come to dominate the field of psychology and had far reaching influence in the medical community at large. Psychoanalysis is based on the concept of the unconscious mind, and it focuses on emotional disturbance, usually the result of some early childhood experience or trauma as the cause of psychological disorders, rather than organic factors in the brain and nervous system. Freud’s work put particular emphasis on the first few years of life because he theorised that early childhood experiences were the root cause of unhealthy development in the human mind.

The legacy of psychoanalysis can be clearly traced in the early history of autism diagnosis and particularly the phenomenon of mother blame. Armed with their understanding of psychoanalytic theory, medical experts in the early 1940s searched for emotional causes for autistic symptoms and identified the root of these symptoms to be the figure most dominant in children‘s early lives-their mothers.

Kanner created the diagnostic criteria for autism under particular circumstances that help explain the origin of refrigerator mothers’ theory. Kanner had observed a small group of children from educated families typically from the academic community. Because of the limited size and selectiveness of his study, Kanner made an unreasonable conclusion that autistic children were more likely to be born to highly intellectual parents who were white and middle or upper class.

Though Kanner thought the inability to relate to others was probably innate, he also stressed what he observed to be the cold intellectual nature of the parents, especially their mothers. He is attributed with coining the term ‘refrigerator mothers’ to describe the mothering of autistic children- as if from a refrigerator that did not defrost.

Coming from an early expert on autism, Kanner’s focus on the dysfunctional mother-child relationship helped successive psychiatrists embrace a psychological cause for the disorder and the refrigerator theory became the reigning psychiatric orthodoxy.

At that same time, as Leo Kanner was developing his theories, Hans Asperger, an Austrian psychiatrist was working to identify a similar disorder and attribute a genetic cause to it. The symptoms Asperger identified in 1944 were closely related but not identical to Kanner’s early infantile autism.

Asperger syndrome sufferers experienced the same difficulty with social interaction as autistic children, but had greater facility with language; often including remarkably large and highly developed vocabularies, and an unusual grasp of highly technical knowledge.

Asperger work went virtually unrecognised until 1970s and Asperger syndrome was only recently recognised in the DSM manual of 1994. Researchers are still undecided on the relationship between Asperger syndrome and autism. Asperger himself believed that the two were distinct disorders but many today emphasise the similarity between the Asperger syndrome and high functioning autism and consider them both to be autism spectrum disorders.

Bruno Bettelheim was a renowned University of Chicago professor and child development specialist. From the late 1940’s to the early 1970’s, he served as director of the Sonia Sshankman Orthogenic School at the University, a residential treatment facility for children with behavioral disorders. Through his work at the Orthogenic school, he built a reputation as a highly regarded specialist in the treatment of autistic children and an influential figure in promoting the refrigerator mother theory.

Building upon Kanner‘s earlier work, he declared that autism was an emotional disorder that developed in some children because of psychological harm brought upon them by their mothers. Substantiated by his own questionable case studies, Bettelheim’s theories likened the lives of autistic children to the experience of prisoners Nazi concentration camps, where he himself had spent 10 months during World War II. He compared the parents, particularly mothers of autistic children to Nazi guards.

One of the factors that made the refrigerator mother theory particularly pernicious was the extent to which the theory was hyped through mainstream media largely due Bettelheim’s charisma and public status. His books, “Empty Fortress” “Infantile autism and the birth of the self” were widely read by general readers who were attracted by his forthright approach. He further popularised his theories on national prime time television shows and in popular magazines.

Bernaud Rimland, a parent of an autistic child and a research psychologist was the first person to challenge the psychiatric orthodoxy concerning autism. Through his own methodical research Rimland came to believe that the refrigerator mother theory was founded on nothing more than circumstantial and anecdotal evidence. In his book on “Infantile autism: the syndrome and its implications for a natural theory of behavior” published in 1964, Rimland questioned the theory that autism was the result of an unloving parent - child relationship and was the first to argue that autism is a biological condition.

Despite the publication of his book, Rimland didn’t have the kind of media access and celebrity enjoyed by Bettelheim, so his work and theories went largely unnoticed by the general public. Richard Pollak, a journalist and author who grew up under the shadow of autism and mother-blame in his own family; had a younger brother Stephen in Bettelheim’s Orthogenic school in the late 1940’s, until he died in a freak accident.

Years later, after a personal encounter with Bettelheim, Pollak discovered the damage that the refrigerator mother theory had caused in his own family and he was motivated to learn more about Bettelheim. Pollak spent years painstakingly researching the life of Bettelheim and ultimately published a biography, “The creation of Dr, B” in 1997. In the book, Pollack had acquired evidence that Bettelheim had misconstrued his own life story, exaggerated and even invented his credentials and expertise on autism, abused the children under his care, terrorised parents and popularised the destructive - refrigerator mother theory without adequate proof.

Meanwhile, a growing number of parents of autistic children many of whom had suffered under the mother blame myth for years began to hear about Rimland’s work. He documented the similarities in the behavior between brain injured children and autistic children. He also communicated to more than 30,000 families with autistic children to learn about the birth milestones and the age in which the parents noticed the altered behavioral characteristics of their children.

In 1969, along with a small group of parents, Rimland founded the National Society for Autistic Children, now the Autism Society of America (ASA). Originally run out of the homes of volunteer parents, NASC broke ground as a public voice for parents of autistic children who rejected the refrigerator mother myth. Rimland is also founder and director of the autism research institute in Sandiego, which serves as a data collection centre and information resource for parents of autistic children worldwide.

Since then, numerous studies are underway all over the world to analyse the basic pathophysiology of this devastating disability. Using a variety of new research tools to study human and animal brain growth, scientists are discovering more about normal development of brain and how abnormalities occur. Functional MRI and PET CT scans have thrown more light into the dynamics of functioning of higher centres in the brain. Though a definitive cause has not yet been established, researchers are convinced about the probable pathophysiological basis of this baffling brain disorder.

While Dr Karthikeyen is an ENT Surgeon and Jeyaram is a clinical psychologist - both representing DOAST Integrated Therapy Center for Autism, Chennai