On 2 April each year, we celebrate World Autism Awareness Day. How many of us truly understand this condition and how a person diagnosed with autism may present? If you’ve wondered what the person’s family may be going through and how this condition is managed, read on.
This year’s theme is: “Transforming the Narrative: Contributions at Home, at Work, in the Arts and Policymaking.” To change the narrative, allow me to try and give you a glimpse into the life of an autistic individual and answer the above-mentioned questions.”
What is autism spectrum disorder?
Autism spectrum disorder is a neurological and developmental disorder affecting sensory processing, learning, behaviour and social skills. It is described as a developmental disorder as symptoms usually appear in the first two years of a child’s life. It is also described as a spectrum disorder as there is a wide variation in the type of the condition and the level of severity of it from person to person. (National Institute of Mental Health, 2023)
How does a child who potentially has autism present or behave?
Difficulties in social skills include: (National Institute of Mental Health, 2023)
- Minimal or no eye contact
- Not responding to their name when being called
- Struggling to express emotions or understand someone’s emotions or behaviours
- Struggling to engage in activities within developmental milestones
- Struggling with turn-taking during a conversation
- Not aware of social norms
Repetitive or restrictive behaviours: (National Institute of Mental Health, 2023)
- Sensory processing difficulties can increase or decrease sensitivity to visual input, auditory (sound), tactile (touch) input, and temperature stimulus.
- Need to respond better to changes to routine.
- Increased intensity in specific topics, i.e. numbers, facts, and details.
- Repetitive behaviours or unusual behaviours, or repeating phrases and words – known as echolalia.
However, individuals diagnosed with autism also present strengths such as excelling in mathematics, sciences, music or art. They may also present as strong visual or auditory learners who can learn the details of things and recall long-term information. (National Institute of Mental Health, 2023).
How does it affect the individual’s family members?
When asking parents how their child’s diagnosis affected them, they mention challenges in their relationship. This is because one parent may (incorrectly) blame the other for the child’s diagnosis; they may have different views concerning treatment interventions or experience one parent demonstrating signs of denial while the other may accept the condition. It can be incredibly overwhelming for the parent/parents as it increases the burden of care, and it usually affects the child’s siblings as they may receive less attention resulting in feelings of abandonment or rejection.
Parents’ social lives are also affected as they may avoid social settings to avoid stigmas. Going to the mall, shopping centres, or school events may be daunting when they think about how the child could behave. There are so many other effects that this condition has not only on the child but also on the family members and caregivers.
Management and treatment interventions
It is advisable to seek help from a healthcare professional who can assess the child or refer them to a suitable place to be attended to professionally sooner rather than later. Early intervention is vital as it allows the child or individual to reduce their difficulties, build on their strengths, and increase their ability to learn new skills. Healthcare professionals that provide treatment intervention for the child are a multi-disciplinary team, as treatment interventions are optimal when all healthcare professionals are involved. Special or remedial schools play an essential role in assisting the child with learning skills and behavioural problems as the schools have well-trained staff members who understand the condition and know how to manage it.
Healthcare professionals involved include:
- Child psychiatrist/ psychiatric registrar – assesses, diagnoses and prescribes medication.
- Psychologist (clinical/ educational) – psychotherapy, play therapy, behavioural therapy etc
- Occupational Therapist – therapy based on sensory processing difficulties, learning difficulties, behavioural problems, daily routine and engagement in tasks, group therapy, caregiver support groups
- Speech therapist – speech and language development
- Social worker – assessing the care needs of the individual and their families with coping skills and any social issues (autism.org.uk, 2020)
As members of society, may we be more willing to provide assistance and support to individuals who have a child or family member with this condition by being understanding, patient, non-judgmental and empathetic. May we refrain from commenting negatively, showing negative non-verbal cues or sarcasm. Let us take a moment to put ourselves in their shoes as caregivers.
If you are diagnosed with autism or know someone who is, you are not alone. Please join any of the multitudes of support groups on social media or online. Remember, try and take it one day at a time.
Happy World Autism Awareness Month!
By Katiso Ndumo: Occupational Therapist
autism.org.uk. (2020, August ). Retrieved from National Autistic Society: https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/professionals-involved/autistic-adults
National Institute of Mental Health. (2023, February). Retrieved from nimh.nih.gov: https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd