FAQ

WHAT IS ASD?

Autism Spectrum Disorder (or ASD) is a developmental disability. It is characterized by impairments in reciprocal social interaction, in verbal and non verbal communication, and the presence of a pattern of repetitive, stereotypic activities. The term spectrum disorder is used to describe the group of developmental disorders that includes Autism, Asperger’s Syndrome and Pervasive Developmental Disorder – Not Otherwise Specified (PDD NOS).

WHAT IS PDD NOS?

This category should be used when there is impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but all the criteria for Autism are not met.

WHAT CAUSES ASD?

The specific cause of ASD is not known.

5-10% cases of autism have an identifiable underlying medical disorder.In the remaining 90% cases of Autism, there is no identifiable cause (idiopathic). Current research evidence available gives families empirical recurrence risks only.

Although the cause of Autism is not fully understood, there is a complex genetic component interacting with environmental factors. Researchers throughout the world are looking to identify these factors and explain why autism arises as a spectrum of disorders. Outside of this, explanations such as bad parenting and misbehaviour have now been dismissed.

ARE THERE ANY PRENATAL OR CARRIER STATE TESTS TO DIAGNOSE AUTISM?

There are no prenatal or carrier state diagnostic tests to diagnose Autism.

IS ASD HEREDITARY?

In many families, there is a pattern of ASD, suggesting that there is a genetic basis to the disorder. There is some tendency for ASD to cluster in families with the incidence rate amongst siblings 50 times that of the general population.

WHAT ARE THE MAIN CHARACTERISTICS OF ASD?

The core features of ASD are impairments in social skills, communication and rigid, repetitive behaviour. Not all children display all of the behaviors described here. However to be diagnosed with ASD the child must show all the essential core features of Autism and meet certain diagnostic criteria.

Social skills

Children and adults with ASD have difficulty understanding and displaying appropriate social and emotional behaviors such as –

• Lack of or abnormal eye contact particularly in younger children
• Inappropriate use of facial expressions and body language
• Difficulty in developing and maintaining friendships
• Difficulty in understanding and responding to the emotions of others
• Apparent insensitivity to the feelings and needs of others
• Inappropriate social interactions with others
• Lack of or difficulty in displaying affection

People with ASD are often described as living in a world of their own; they seem to have different interests and priorities from others. Their interactions with other people are often to meet their needs rather than for the enjoyment of social interaction. Sometimes parents feel that there is something different about the child, from a very early age.

Communication

Children with ASD have difficulty with both verbal and non verbal communication. Language development is usually delayed in onset, and disordered in development. Problems in the development of language and communication are manifest by behaviours such as –

• Echolalia (repeating words or sentences), and pronoun reversal (saying ‘you’ or ‘give him’ instead of ‘I’ or ‘give me’.
• Idiosyncratic use of language.
• Repetitive use of language and obsessive talk.
• Difficulty in initiating and sustaining conversations.
• Unusual rhythm, pitch and intonation in speech.
• Relatively poor language comprehension in comparison to expressive language.
• Difficulty understanding and using facial expressions and body language.

Interests, activities and behaviours

Autism is also characterized by restricted, repetitive and stereotyped patterns of behaviour and interests. These characteristics are manifest in behaviours such as –

• Impaired creative and imaginative play, eg. prefers odd objects or lines up objects
• Insistence on sameness and resistance to change
• Ritualistic behaviours, eg. insisting on taking the same route to places
• Obsessive preoccupation with interests, activities or objects often with things that are unusual for the child’s age
• Inappropriate attachment to objects
• Unusual body use, eg. hand flapping, finger wiggling, grimacing, toe walking, rocking, odd gait and body posturing

WHAT OTHER FEATURES ARE ASSOCIATED WITH ASD?

The following features are not part of the core diagnostic characteristics but are sometimes seen, particularly in younger children.

Difficult & Unusual Behaviours

• Excessive temper tantrums
• Mood swings
• Unexplained periods of distress or giggling/laughing
• Aggressive/destructive behaviour (in a minority of cases)
• Unusual fears or phobias, eg. very frightened of certain TV ads
• Self injurious behavior, eg. hand biting, head banging
• Sleep disturbances, eg. needs very little sleep and is active at night
• High stress and anxiety levels
• High activity levels and short attention span except in interest areas
• Some children are very strong willed and resist compliance with other’s requests
• Bizarre sense of humor

Deviant Sensory and Motor Development

• Apparent deafness, eg. the child seems to ‘tune out’
• Distress at hearing certain sounds, eg. panics when the vacuum cleaner or pressure cooker is used, or intensely dislikes loud noises
• High tolerance to pain and insensitivity to heat and cold
• Light gazing, unusual use of peripheral vision, looking at objects at odd angles, etc
• Spinning objects or self and high tolerance to becoming giddy
• Resistance to being touched or intolerance to the feel of materials on their skin but enjoys rough and tumble play
• Self imposed unusual and restricted food preferences
• Delayed toilet training and some times fears and phobias related to the toilet
• Unusual sniffing or smelling of objects or heightened sense of smell
• Inconsistent motor skills

WHAT IS THE INCIDENCE OF ASD?

Studies suggest the prevalence is somewhere between 1 in 100 500. In recent years there has been a large increase in the number of children diagnosed with ASD, particularly those in the high functioning category. This is probably due to a broadening of the criteria for diagnosis, and better diagnostics methods enabling detection at a very young age. The high prevalence of ASD makes it one of the most common developmental disabilities, commoner than cerebral palsy or Downs syndrome. Yet many in the community lack an understanding of how individuals are affected by it.

WHY DOES ASD AFFECT MORE MALES THAN FEMALES?

Approximately three out of four people with ASD are male. It is not known why this occurs, but this high ratio of boys is consistent, with other disorders involving language and learning.

IS THERE A CONNECTION BETWEEN ASD AND EPILEPSY?

About 30% of children with ASD will also develop epilepsy. The group most likely to develop epilepsy are those children who have a more severe intellectual disability. The onset may occur at any age but most frequently occurs during adolescence.

HOW IS ASD DIAGNOSED?

There is no absolute test available for an Autism diagnosis. These children are diagnosed based mainly on behavioral characteristics that meet certain criterion in three main areas of impairment, namely social interaction; language and communications; and thought, behaviour and interests.

It is a clinical diagnosis based on observations. This diagnosis may include contributions from psychiatrists, pediatricians, speech pathologists, neurologists and other consulting authorities.

Autism is diagnosed by examining the child’s development and behaviours. Sometimes Autism can be difficult to diagnose, so it is important to have a comprehensive assessment to distinguish ASD from a range of other difficulties. A hearing assessment may also be required.

WHAT ARE THE DIFFERENCES AMONG SCREENING, DIAGNOSIS AND A FULL ASSESSMENT OF ASD?

A screening tells you if a child is at risk for having an ASD and should have a more detailed assessment. Screenings are brief, easy to use (by parents and professionals), and inexpensive. A positive screening should be followed up by a diagnostic assessment.

Screening always carries the risk of false positive and false negative results. Thus, if parents are concerned, they should be wary of quick screenings and reassurances that everything will be all right, without careful attention to their concerns.

Parental concerns are always an indication for evaluation by an expert.

HOW YOUNG CAN A CHILD BE TO RECEIVE A DIAGNOSIS OF ASD?

Autism spectrum disorder is probably present from birth and is usually evident before the child is around three years of age. Some children have such clear symptoms that they can be reliably diagnosed with ASD at 12 15 months, but most clinicians will want to wait until a child is 18 – 24 months before giving a diagnosis. It is important for children who receive diagnosis before 3 years of age to be re evaluated, including measurement of changes in cognitive and language skills.

Because of the extreme variability of presentation verbal children are often missed and may not be diagnosed till they are in school.

ARE THERE DIFFERENT TYPES OF ASDS? ARE SOME CASES OF ASD MORE SEVERE THAN OTHERS?

Within the category of Autism Spectrum Disorder, there are a number of subtypes that are associated with different levels of severity in different areas.

Autism is the disorder that has received the most study and has been recognized for the longest time. It is defined by the presence of difficulties in each of the three areas listed above (social deficits, communication problems and repetitive or restricted behaviours), with onset in at least one area by age 3 years. It may or may not be associated with language delays or mental retardation.

Asperger Syndrome is a form of ASD that is often identified later (e.g., after age 3, usually after age 5) and is associated with the social symptoms of Autism and some repetitive interests or behaviours, but not with language delay or mental retardation. Many parents and professionals use this term with older and/or more verbally fluent individuals with Autism because they feel it is less stigmatizing.

Rett Syndrome and Child Disintegrative Disorder are both very rare, severe forms of ASD that have particular patterns of onset, and, in the case of Rett Syndrome, a specific genetic basis (usually seen in girls).

Pervasive Developmental Disorder Not Otherwise Specified (PDD NOS) is a form of ASD used to describe individuals who meet criteria for Autism in terms of social difficulties as well as communication problems and restricted, repetitive behaviors. However they do not meet all criteria for Autism. Yet they have problems both at home and in school bringing them to a professional. The difficulties of children and adults with Asperger Syndrome or PDD NOS are similar, and milder than those of individuals with Autism, suggesting that these distinctions are fairly arbitrary and should not be used to limit services or benefits.

WHAT IS HIGH FUNCTIONING AUTISM?

About 70% of people with ASD have an IQ within the intellectually disabled range. The other 30% have normal to above average levels of intelligence. This group may be referred to as having high functioning Autism. Individuals with high functioning Autism have lifelong social difficulties. However, impairments are not as severe in their communication skills.

Children with high functioning Autism tend to have an uneven profile of skills. They may also be gifted in some areas, making it difficult for parents and professionals to recognize that they have a developmental disability.

WHAT IS THE DIFFERENCE BETWEEN HIGH FUNCTIONING AUTISM AND ASPERGER’S SYNDROME?

There is very little difference between high functioning Autism and Asperger’s Syndrome. Both disorders lie on the Autism spectrum. People with these disorders are at the more able end of the spectrum, that is, they have average to above average intelligence. Aspergers have better communication skills and tend to speak fluently although their speech may sound overly formal or have odd intonations.

WHAT IS AN AUTISTIC SAVANT?

Characterized in movies such as ‘Rainman’ and ‘My Name is Khan’, Autistic savant is the term used to describe a person with ASD who has a special skill. Around 10% of people with ASD have special or remarkable skills, even though they may have an intellectual disability.

There is a range of savant abilities.

Splinter skills are most common. Typically an individual with Splinter skills is very good at committing facts to memory or has an exceptional knowledge of their special or obsessive interest.

Talented skills refers to a highly specialized ability such as outstanding artistic ability or calculating complex mathematic problems in one’s head.

Prodigious skills are the rarest type. Only a small number of Autistic savants have these skills, which may include the ability to play an entire piano concerto after one listen, or making a detailed drawing of an entire city from memory.

There is currently no definitive explanation for Autistic savant behaviour.

WHAT IS THE PROGNOSIS FOR SOMEONE DIAGNOSED WITH ASD?

Autism is a condition needing lifelong support with no magical cures as of today, the core characteristics remaining to varying degrees. The outcomes are highly variable but are generally dependent on factors such as –

• The level of intelligence of the individual
• Development of spoken language in the individual
• Personality or temperament of the individual
• The level of family support
• Access to appropriate support services

Early diagnosis and support will greatly improve outcomes for the child and the family. The most effective time to teach the child appropriate behaviours is in their early years before problem behaviours become established.

The core characteristics and the degree in which they impact on behaviour tends to change over time. In early childhood, challenging behaviours, social and language difficulties are most marked. Middle childhood is often a more stable period, when social understanding increases, language skills improve and behavioural problems decrease. Adolescence can be a particularly difficult time, with increases in behavioural problems occurring in some cases, as well as mental health issues, such as depression. Adulthood is usually a more stable period with continued learning of social, communication and life skills sometimes taking place well into adulthood.

The majority of people with ASD will need some form of ongoing support throughout their life. Few people are able to lead independent lives. The extremely able ones may attend university, be employed in a highly skilled position, marry and have a family. However, they may experience lifelong difficulties in certain areas, such as social situations, difficulty with intimacy and empathy, communicating with their partner and display perfectionist or obsessive behaviors.

It is very likely that many talented artists, inventors and business people from the past and present are on the Autism Spectrum.

WHAT METHODS ARE CURRENTLY USED TO TREAT ASD?

There is no substantiated cure for autism. ASD, similar to other neurodevelopmental disabilities need supportive and continuous management.

Medications have not been proven to correct the core deficits of ASDs and are not the primary mode of treatment.

Management aims to maximize the child’s functional independence and improve quality of life. This is done by facilitating development and learning, promoting socialization, reducing maladaptive behaviours, and educating and supporting families.

Several methods have been developed to improve the communication and social skills of Autistic individuals, and thereby help lead autistic individuals in a positive developmental direction. Predominant among these techniques are behavioural therapies, which emphasize in building sound social and communication skills in children through Behavioural Intervention.

WHAT IS BEHAVIOURAL THERAPY / INTERVENTION?

Any action or word is a behaviour. Behaviour therapy aims at increasing desired behaviours and reducing unwanted behaviours. This is done in several ways like using reinforcers, positive reinforcement etc. The underlying aim is to improve the communication and social skills of the child, at the same time achieving instruction control by the carer.

HOW EARLY CAN WE START INTERVENTION?

Early intervention definitely promises better outcome, in terms of functioning of the child. Therefore entry into intervention is recommended as soon as an ASD diagnosis is suspected rather than deferring until a definitive diagnosis is made.

CAN DRUG AND NUTRITIONAL THERAPIES HELP TREAT ASD?

As mentioned already, medications have not been proven to correct the core deficits of ASDs and are not the primary mode of treatment. Medication may be used to treat sleep dysfunction, associated medical problems, such as seizures, GI disturbances like constipation, and for treating coexisting challenging behavioral or psychiatric conditions.

Different diets like GFCF(gluten free casein free diet), megavitamins, omega 3 fatty acids etc. have been commended by some parents and groups but are unsubstantiated scientifically. They are not recommended as an established mode of treatment by the medical community.