World Autism Awareness Day is observed on April 2 every year to make people understand and accept people with autism, foster worldwide support, and inspire people. It is a day that spreads kindness and autism awareness.
The theme for this year is :Inclusion in the Workplace-- which aims at directing attention towards obstacles faced by people with autism on a daily basis. This theme spotlights difficulties people with autism experience at the workplace.
With the COVID-19 pandemic outbreak, education of people with autism is, particularly, disrupted highlighting the need for more inclusion to help integrate people living with autism.
Autism, or autism spectrum disorder (ASD), applies to a wide range of neurodevelopmental condition that distorts the communication and social interaction skills of an individual.
People with autism have challenges with social skills, repetitive behaviours, speech and non-verbal communication.
Pointers to a child suffering from this condition may be evident before a child reaches the age of three years old. There are many subtypes of autism, mostly influenced by a combination of genetic and environmental factors. Because autism is a spectrum disorder, each person with autism has a distinct set of strengths and challenges.
The ways in which people with autism learn, think and solve problems can range from highly skilled to severely challenged.
Some people with ASD may require significant support in their daily lives, while others may need less support in some cases and live entirely independently.
ASD can be associated with other conditions including Intellectual Disability, Attention Deficit Hyperactive Disorder (ADHD), anxiety disorders, Obsessive Compulsive Disorders and Epilepsy.
The exact prevalence of ASD in Ghana is not known, however Victor Lotter, a researcher, estimated a prevalence of 0.7 per cent in Africa using six different countries with Ghana inclusive. USA estimates a prevalence of one in 54 children with a higher prevalence in boys (4:1) of ASD.
The exact cause of ASD is still being investigated but there is ample evidence to show that it is largely a multigenetic condition with some environmental risk factors.
Some environmental factors identified include certain infections during pregnancy like rubella, taking sodium valproate during pregnancy and many others. Red flags or features pointing to possibility of ASD include poor or inconsistent response to name even though child has normal hearing.
Delay in use of communicative gestures like pointing, waving, nodding, poor eye contact and poor attention to voice are worrying signs.
Repetitive behaviour or activities like hand flapping, whole body rocking or spinning or unexpected reactions to the way things look, smell, feel, sound and move may be early pointers.
Picky or selective feeding habits, delayed communication or repetitive language are also reasons to suspect ASD.
Some children may engage in solitary play or a typical or unusual and narrow interests and play. Emotional dysregulation, tantrums and being bothered by minor changes in their environment are also pointers.
There is no blood test or brain imaging that is used to diagnose ASD. It is diagnosed using special assessment tools that look for features of ASD. It is done through an extensive interview (Autism Interview) together with observation of the child and interaction with the specialist.
There is no cure or medicine for ASD but there is evidenced based treatment that works well when done consistently and when started early. Early diagnosis and early intervention give the best prognosis in ASD. Concerns about a child’s communication or suspicion of a child being on the spectrum should warrant prompt assessment by a health professional who will refer you to the appropriate place for an assessment.
You may be asked to check your child’s hearing and you may do other blood tests or imaging studies depending on associated findings.
Treatment therapies include speech therapy, occupational therapy, behaviour therapy and special education support. There are medications for associated problems seen in some Individuals with ASD including ADHD, epilepsy, sleep problems, constipation etc.
Depending on the severity and level of ASD, some children will do well in mainstream school with special educational supports- what is known and highlighted by this year’s theme as inclusion.
Others will do better in special schools. Others may start from early intervention centres/special schools and move to mainstream when they have gained enough communication and self-help skills.
Every child with Autism is different and there is no one size fits all when it comes to programme planning. It is, therefore, important to have people who can help make such decisions and evaluate decisions periodically.
Take home message is that autism is real and a biological condition definitely not spiritual. There is treatment and early diagnosis makes a lot of difference. Treatment needs consistency and may take a life time but when given the right supports individuals with Autism can thrive and use their unique abilities to do amazing things. We, as a society, need to learn acceptance of individuals with different abilities and stop stigmatising individuals and families affected by Autism.
‘Let’s wait and see’ ‘s/he will grow out of it’ is never a good idea. If indeed your child has Autism or some form of communication delays, early intervention is best not waiting and seeing.
Special thanks to Dr Marilyn Marbell-Wilson, a Paediatric Neurologist, who works at Mission Paediatrics in Caprice, Accra.
The writer is a member of the Paediatric Society of Ghana.