Steeped in myths and prejudices, misunderstood for certain diseases similar to it, the definition of Autism alone has challenged the medical world. Specialists in the field describe Autism as a neurological and developmental disorder condition starting in early childhood and lasting throughout life. They have pointed out that the exact causes are unknown although studies point to likely trigger factors. The main challenge faced is the reluctance of parents and guardians to get their child tested by a qualified physician if he/she shows signs of a personality disorder. “Each autistic child is unique and interventions and therapy are custom tailored for his/her specific disorder. If these interventions are initiated early in life when the child is very young, we can promise the parents that their child would have a better quality of life and be able to live a near normal life”, says Dr Saraji Wijesekara, President of the Sri Lanka Association for Child Development, Senior Lecturer in Paediatrics, Faculty of Medical Science, University of Sri Jayawardenepura and Consultant Paediatric Neurologist, Teaching Hospital, Colombo South.
Excerpts:
Q. Autism is a subject that not many people understand. How would you describe Autism?
A. Autism, or autism spectrum disorder (ASD), refers to a range of conditions characterized by challenges with social skills, repetitive behaviours, speech and nonverbal communication, as well as by unique strengths and differences.
It is a neurological and developmental disorder that begins early in childhood and lasts throughout a person’s life.
Q. What are its causes? Is it a single cause or a combination of factors?
A. The exact cause of autism is still being investigated. Research suggests that a combination of factors - genetic and environmental - may account for differences in development.
Q..Are there different types of autism?
A. Autism is a spectrum condition. The term ‘spectrum’ reflects the wide variation in challenges and strengths possessed by each person with autism. There are four main sub-types of autism:
• Autistic Disorder, also known as autism
• Asperger Syndrome, also known as Asperger’s disorder or simply Asperger’s.
• Childhood Disintegrative Disorder, also known as CDD, dementia infantalis, disintegrative psychosis or Heller’s syndrome.
• Pervasive Developmental Disorder also known as PDD or atypical autism.
Q. How common is this disease in Sri Lanka and in the world?
A. Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around one in 68 American children as on the autism spectrum–a tenfold increase in prevalence over the last 40 years. In Sri Lanka, Autism may be more common than most people think. Though no proper statistics are available the actual numbers may be higher due to parents being reluctant to admit that their child has a development problem because of the stigma surrounding the condition. Delay in getting the child examined by a professional medical person could result in a delay in getting treatment he/she needs.
Q. What happens if they delay getting the proper treatment?
A. It would delay the child getting the interventions specifically tailored for each child, which are now in place in our health system.
Q. What are the signs and symptoms of Autism? Is it identifiable even when the foetus is still in the mother’s womb?
A. The timing and severity of autism’s first symptoms could vary. Some children with autism show hints of future problems within the first few months of life. In others, symptoms may not become obvious until 24 months or later.
Q. At what age is a parent able to identity these symptoms after the baby is born?
A. Possible signs of autism in babies and toddlers are usually discerned as follows:
1. By six months, no social smiles or other warm, joyful expressions directed at people
2. By six months, limited or no eye contact
3. By nine months, no sharing of vocal sounds, smiles or other nonverbal communication
4. By 12 months, no babbling
5. By 12 months, no gestures to communicate (e.g. pointing, reaching, waving etc.)
6. By 12 months, no response to name when called
7. By 16 months, no words
8. By 24 months, no meaningful, two-word phrases
9. Loss of any previously acquired speech, babbling or social skills
Q. What are the possible signs of autism at a later stage?
A. Parents should look for the following signs in an older child:
• Avoids eye contact and prefers to be alone
• Struggles with understanding other people’s feelings
• Remains nonverbal or has delayed language development
• Repeats words or phrases (echolalia)
• Gets upset by minor changes in routine or surroundings
• Has highly restricted interests
• Performs repetitive behaviours such as flapping, rocking or spinning
• Unusual and often intense reactions to sounds, smells, tastes, textures, lights and/or colours.
Q. I understand there are certain factors that put some individuals more at risk of getting Autism than others. Do you agree? If so what are they?
A. There may be different factors that make a child more likely to have ASD. They include the following:
• Children who have a sibling or parent with an ASD are at a higher risk.
• ASDs tend to occur more often in people who have certain other medical conditions. About 10% of children with an ASD have an identifiable genetic disorder, such as Fragile X syndrome, tuberous sclerosis, Down syndrome and other chromosomal disorders.
• Some harmful drugs taken during pregnancy have been linked with a higher risk of ASD, e.g. the prescription drugs thalidomide and valproic acid.
• Twelve to 13 percent of autism cases stem from pregnancy issues that result in prematurity, low birth weight or Caesarian section.
A recent multinational study of parental age and autism risk found increased autism rates among children of teen moms and among children whose parents have relatively large age gaps.
Q. How is Autism diagnosed? Is it a complex procedure?
A. A diagnosis is the formal identification of autism, usually by a multi-disciplinary diagnostic team.
Q. Who comprises this team?
A. The team usually includes a speech and language therapist, paediatrician, psychiatrist and/or psychologist. The Paediatricians and Paefiatric neurologists play a major role in Sri Lanka. For a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests since early childhood, to the extent that these limit and impair everyday functioning.
Q. Can Autism be cured? What is the usual treatment given to persons with this disorder?
A. There is no ‘cure’ for autism. However, there is a range of strategies and approaches - methods of enabling learning and development - which people may find helpful.
Each child or adult with autism is unique and, so, each autism intervention plan should be tailored to address specific needs. Intervention can involve behavioural treatments, medicines or both. Early intensive behavioural intervention involves a child’s entire family working closely with a team of professionals.
Q. What are the challenges that face those dealing with the care of autistic children?
A. Mostly delay on the part of parents to bring their child early to be examined if they see anything different with regard to his development and growth. All state hospitals have free screening facilities to evaluate the child and introduce the specific interventions. Prejudice and superstitions are the main deterring factors.
Q. What about education?
A. That too. The more educated parents usually come as soon as they see something unusual about their child’s behaviour. It is the parents in rural areas who are likely to delay in bringing their child for testing.
Q. Have you a message for parents?
A. If your child’s behaviour reflects a development problem at any stage of his/her life, do not delay getting the child examined by a professional psychologist and psychiatrist to enable him to enjoy his / her fullest potential.