World Autism Awareness Day: Challenges of COVID-19 on autism community, caring for the child and keeping hope alive
When Nwanze Okidegbe’s son was diagnosed with Autism at the age of two and half years, he was in denial. Nwanze, who was former Chief Economic Adviser to the President of Nigeria in July 2011, thought that he would outgrow his son’s diagnosis and continued to hope for change. However, though residing in America, with passing years of medical interventions and research, he came to the realization that it has no cure and that he could not wish it away. That realisation was followed by acceptance and the desire to do something about it. Hence the birth of the foundation, Ike Foundation For Autism (IFA), where he is President and Founder.
“The reason why I started the Foundation is two-fold. First, is to increase the awareness of autism in Nigeria and eliminate the stigma associated with it while providing services to autistic community that improves their quality of life. Second and most important to me is to use my family as a source of hope and service to others.” Nwanze said.
According to the Centers for Disease Control and Prevention (CDC), Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less.
In Nigeria, a study found 11.4% children with ASDs according to diagnostic criteria for childhood autism, and 51.2% of children demonstrated a lack of expressive language in cases of ASDs in the age group researched.
Sadly, Nigeria does not have a policy in place for neurodevelopmental disorders; perhaps because the figures aren’t adequate because many parents are in denial or some prefer to keep mute on the issue as they prefer that no one is aware they have a special needs child.
Today, being World Autism Awareness Day (WAAD), the idea is to put a spotlight on the hurdles that people with autism and others living with autism face every day. Thanks to WAAD, activities are planned every year to increase and develop world knowledge of children and adults who have ASD.
That is not all, World Autism Awareness Day goes one step further to celebrate the unique talents of those with autism, while putting a huge focus on the warm embrace and welcome that these skills deserve through community events around the globe.
Nurturing a special needs child isn’t easy however, most of the parents of such children have often summoned up courage to pull through.
“I give all the credit to my wife. She had to give up her successful career as a Pharmacist to nurture him and take care of his other siblings. Taking care of an autistic child is not a walk in the park. It is very demanding.” Nwanze said adding that “There is also a danger that all attention is given to the special needs child at the expense of the siblings. I cannot describe how she managed and continues to manage it but it takes a toll” Said Nwanze.
According to Okidegbe, “Autism is a spectrum and no two persons on the spectrum are the same. What works for one person may not work for the other. It has no cure but it is treatable. Some are high functioning while some cannot lead independent lives. One commonality is that, most persons within the autism spectrum have communication and behavior challenges.” He explained.
“Early interventions for children with Autism Spectrum Disorders have been documented to positively influence prognosis. So, identifying the symptoms of Autism in early years and instituting intervention, improves the educational and vocational opportunity for individuals with Autism.” Muideen Owolabi Bakare, Chief Consultant Psychiatrist (Consultant Special Grade 1), Head, Child and Adolescent Unit, Federal Neuro-Psychiatric Hospital, Enugu, told BusinessDay in an exclusive chat.
He said that this ultimately leads to an opportunity to contribute to economic development of their community, with appropriate policies in place that can mitigate discrimination of the patients and the parents and promote community inclusion.
According to Bakare, “The advantage of caring for children with Autism is that it helps them to get involved in community participation, contributing their own quota to development of their community, rather than being a persistent burden and source of drain to the community resources”
It is sad to know that there have been various misconceptions about children with special needs.
Muideen says it has been documented that knowledge and awareness about Autism is largely limited in sub-Saharan Africa. Usual areas of misconception are the etiological or causative factors that are almost always attributed to spiritual origin like witchcraft among other obnoxious belief.
“This affects the help seeking behaviour among the parents and relatives, seeking spiritual interventions from traditional religious practitioners and the relatively new religions of Christianity and Islam. Exorcism, making sacrifices often include the types of interventions often sought before coming in contact with orthodox practitioners, leading to late intervention and poor prognosis.” He said.
Following the same line of thought with Bakare, in another exclusive chat with BusinessDay, Kure Hajara, Senior Registrar in Paediatrics at the National hospital, Abuja says “The care for an autistic child is nearly as important as the care for any child with any chronic illness. This is because an autistic child is a child trapped in his own world and finds means of communicating with the external world which is in turn interpreted as abnormal behaviour.
So, it’s our duty as Physicians to lead them through life by communicating and understanding them, guiding them through task with specific tools and helping parents with specific skills to be able to cope with the stress.” Hajara advised.
Sadly, the burden of COVID 19 is upon us and special needs children cannot be ignored.
Muideen explains that parents with children with autism should equip themselves with information about COVID-19 such as modes of transmission, simple preventive strategies such as good hygiene, like frequent hand washing, social distancing and avoiding crowded environment.
“Extra caution needs to be taken to ensure the children with Autism engage in frequent hygienic practices at this period, limit hospital, church and other visits as much as possible this period and ensuring the children are within the watch of the parents.
They should keep in touch with their doctors and other professionals through phone or other IT consultations. They may want to engage the children in learning through electronic media like Tablets and computers at this period in lieu of physical presence in school or vocational environments.” Muideen recommended.
For Nwanze, “COVID-19 is particularly difficult on autism community. Many children on the autism spectrum are very hyperactive and always in motion. That makes it difficult for parents to keep them confined in the house. Parents will have to find out the activities that their children like and try to engage them with such activities.
I want the parents to know that they are not alone. IFA is always searching for and sharing activities that parents may consider for their children. We are in it together and this phase will pass. Do not lose hope. God will give us all the strength to soldier on.” He said.
On the need for government’s intervention, Nwanze says “In the USA where I live, the government provides educational and health services to autistic persons up to the age of 18 years and after that, social security and medicare kicks in for the rest of the autistic persons’ life. The private sector organisations and philanthropists support autism organisations with donations and CSRs.”
However, the case in Nigeria is different. “In Nigeria, parents with autistic children are on their own. There is little or no help from the government and those parents with limited means leave their children to waste.
I will appeal to government to support special needs children and their families. A society is judged by how they take care of the least among them. History will judge us harshly if we do nothing. The private sector organisations provide some support but they can do more. I also appeal to them to increase their support to special needs causes.” He implored.