Supportive environment key to best life for autistic individuals

With good support and care, autistic children can thrive and have a good quality of life. — Photos: Filepic

In 2008, the United Nations (UN) General Assembly designated April 2 as World Autism Awareness Day to implement measures to increase public awareness about autism globally.

This Day is one of the seven official health-specific UN Days.

In 2011, Paula Durbin-Westby started Autism Awareness Month, the objectives of which were to support autistic individuals, celebrate their differences, and combat the negative stigma of autism and harmful discussion of “finding a cure”.

What you call it

Autism is a neurodevelopmental disability that an individual is born with.

People with Autism Spectrum Disorder (ASD), otherwise termed autism, often have problems with social interaction and communication, and restricted or repetitive behaviours or interests.

ASD individuals may also have different ways of learning, moving or paying attention.

While some people without ASD may also have some of the characteristics of the disorder, such characteristics can make life very challenging for those with ASD.

The commonly-used term “autism” is interpreted differently by different people.

This is not surprising as various terms have been used in its diagnosis, i.e. Asperger’s Syndrome, autistic disorder, Kanner’s Syndrome, childhood autism, atypical autism and Pervasive Development Disorder Not Otherwise Specified.

Because individuals with these diagnoses all have features of autism, the current term used is ASD or autism.

The word “spectrum” refers to the different experiences of autistic individuals, some of whom may require more support than others to live the lives that they want.

The way autism affects a person can change as they grow and develop, and experience different environments.

Common characteristics

Every individual with autism has different features and experiences. However, there are several common characteristics among such individuals, i.e.:

• The way they use language and talk may be different to most other people.
• Their use of facial expressions, tone of voice and gestures are different to most other people.
• Making and maintaining friendships may be difficult for them.
• They may have set ways of doing things and have difficulty in doing them in a different way.
• They may be focused on details and spotting mistakes.
• They may be good at identifying patterns or solutions, and providing solutions to problems that most other people cannot solve.
• They are often very good at understanding and working with structured systems, e.g. languages, computers and music.
• They may show passionate interest in certain matters, but these interests may change throughout their life.
• Certain sensations, e.g. loud noise or specific textures, may be either avoided or sought.
• They may have food fads, while they cannot stand other foods because of their smell or textures.
• They may have difficulty in grasping the global aspects of a group project, so while they can perform a specific individual role, they have difficulty in perceiving how it fits with everyone else’s parts in the project.
• While they have good ability in paying attention to details, they also have difficulty in leaving out unnecessary details during discussions or project work.
• They can be very determined and will continue with tasks or problems when other people may have given up.
• They are so determined to ensure everything is perfect that they may even skip meals or sacrifice sleep to do so.
• They may have difficulty working in groups when there is no clear communication about what is expected of them.

Individuals with autism are often excel with structured systems like music.

Diagnosing ASD

The diagnosis of autism can be challenging.

It typically depends on the individual and his or her age.

It can usually be diagnosed in childhood as it is present from birth.

However, it may also be diagnosed later in life.

Knowledge about autism has increased with time. As such, diagnoses can be made in older individuals if the features were not recognised when they were children.

There are certain features that are looked for when making a diagnosis.

However, an autistic individual may not have all these features.

For example, delayed speech or not speaking at all is a sign of autism, but many autistic children talk at the same age as a child who is not autistic.

The American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition, (DSM-5) provides standardised diagnostic criteria, i.e.:

• Persistent deficits in social communication and social interaction across multiple contexts, as manifested currently or by history.
• Restricted, repetitive patterns of behaviour, interests or activities, as manifested by at least two features, currently or by history.
• Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies later in life).
• Symptoms cause clinically significant impairment in social, occupational or other important areas of current functioning.
• These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay.

  Intellectual disability and ASD frequently co-occur; to make concurrent diagnoses of ASD and intellectual disability, social communication should be below that expected for the patient’s general developmental level.

The features in babies and toddlers include aspects in relation to talking and emotions, play and sensory, i.e. sight, touch, sound, smell and taste.

The features in children four years and above include aspects in relation to communication, relationships, different situations and sensory.

The features in teenagers include aspects in relation to communication, behaviour and different situations, learning and hobbies, emotions and relationships, and sensory.

The features in adults include aspects in relation to work and education, relationships and socialisation, hobbies and skills, communications and emotions, and sensory.

There are individuals with autistic traits, but who do not have autism.

To be diagnosed with autism, the traits have to be present from birth and have significant difficulties that impact the affected individuals’ daily lives.

The autistic individual needs to use their own ways to overcome these difficulties or need assistance from their carers to overcome the difficulties, or both.

A supportive environment contributes significantly to an autistic individual’s development, well-being and quality of life.

There are many examples of autistic individuals who have obtained doctorates and became professionals like doctors etc.

The local situation

There is no epidemiological data of autism in Malaysia.

However, the then Health Minister informed Parliament in March 2022 that 589 individuals aged below 18 years were diagnosed in 2021, compared to 562 in 2020 and 99 in 2010.

He also noted that males were four times more likely to have the condition than females.

It has been suggested that the rising rates of ASD here could be attributed to increased awareness of the condition and changes in diagnostic criteria.

There are non-governmental organisations (NGOs) that have intervention (early and intensive), vocational and therapy programmes for those with ASD.

Much more needs to be done for this condition, which is lifelong without prospects of a cure.

The measures include improved diagnostic pathways, ensuring the health delivery system is user-friendly for the autistic individual, providing supportive environments, and increasing awareness and research of autism.

Dr Milton Lum is a past president of the Federation of Private Medical Practitioners Associations and the Malaysian Medical Association. For more information, email [e-mail]. The views expressed do not represent that of organisations that the writer is associated with. The information provided is for educational and communication purposes only, and it should not be construed as personal medical advice. Information published in this article is not intended to replace, supplant or augment a consultation with a health professional regarding the reader’s own medical care. The Star disclaims all responsibility for any losses, damage to property or personal injury suffered directly or indirectly from reliance on such information.