Autism is not a word many people are familiar with; in fact if you pick people randomly and ask them what autism means, very few would be able to tell you. If you describe the behavioral characteristics of those living with autism, only a few people would relate to what it is really. Many believe people living with autism are possessed by demons or that they suffer from mental issues. But that is not the case.
Autism is a developmental disorder that impairs one’s ability to communicate and interact relative to how most people would. It involves persistent challenges in social interaction, speech and nonverbal communication, and restricted/repetitive behaviors. The effects of ASD (Autism Spectrum Disorders) and the severity of symptoms are different in each person which makes it quite an uphill task to easily identify symptoms.
It is estimated by the World Health Organization (WHO) that 1 in 160 children worldwide live with autism. While accurate figures in Nigeria are hard to come by, some reports say up to 1 million Nigerians are on the autism spectrum. Despite this huge number however, awareness about ASDs and the management remains very low. Experts point to factors like stigma, ignorance, negative cultural practices, tortuous or delayed pathways to care, inadequate number of trained personnel, inadequate health care facilities, and burden of care (emotional and financial) as issues.
Numerous efforts have been made to raise awareness about autism in Nigeria and one of the most consistent is the Orange Ribbon Initiative by the Guaranty Trust Holding Company (GTCO). The Initiative which began in 2009 is an advocacy program which brings together globally renowned medical specialists, parents, caregivers, health practitioners and the academia to share ideas on how to support children and adults living with Autism. A key component of this program is the annual Autism Conference which is now in its 11th year. The conference aims to drive needed conversations about life with autism and stop the stigmatization associated with ASDs in Nigeria while providing support and educating society on best practices.
At this year’s edition which had as its theme “Life Beyond The Diagnosis” various experts and thought leaders in health and the academia were brought together over a 2-day period to share insights on autism spectrum disorders and provide important advice for parents, health workers and caregivers on how to manage those living with autism. These are 4 key things we learned from the conference.
There is no one-size-fits-all approach to Autism
Even though there are similar characteristics among different people with Autism, one cannot use any individual case to compare another as each case of ASD and its management is different. With this in mind, it is important that parents seek the opinion of qualified health professionals early to determine whether or not their wards might have ASD instead of running with suggestions from family members or friends on how to manage autism. Early diagnosis, and consequently treatment reduces the symptoms of autism and improves the quality of life of individuals with autism and their families.
Autism is not a death sentence.
It is a fact that people with autism can go on to live long and fruitful lives. The popular actor Sir Anthony Hopkins who is now 83 was diagnosed with autism and says his unique ability to look at people differently and deconstruct a character is a result of living with ASD. However, it is necessary to note that the life expectancy of those with autism is considerably lower. This is as a result of several other factors that may be directly or indirectly related to Autism such as; suicide, drowning, road accidents, seizures. Also, those living with autism are easy targets for violent crimes, which can also result in their death.
Autism does not exist only in children.
As children with autism grow into adults, they grow with the disorder and live all their lives with it. The quality of life they live, will depend on how much they are prepared for it which is why it is important for parents to look beyond just catering for their needs and help them become independent, functional adults. The belief that people with autism need babysitting at all times opens up the risk that those with ASD will not be able to care for themselves at least to some extent if the need arises.
Help is available
One thing every parent who has a child with autism wants is for the child to be cured but at the moment no cure for ASDs exists. What experts advise is proper management, and as we have highlighted earlier, there is no generic treatment for autism. It is advised that focus should be on providing necessary resources and tools that will help the child and make the learning process as simple as possible. Luckily there are many resources and tools available on the internet and in-person that can help parents and caregivers better understand and manage autism. Like these ones from experts who spoke at the 2021 Guaranty Trust Autism Conference.