Deji is a healthy one-year-old, but his parents were concerned because he was not doing what children at his age do, like expressions, gestures etc. His parents got him toys but he hardly played with them, they tried to sing to him so he could dance but he never responded and most of all, he hardly makes eye contact. His parents were worried because he wasn’t doing many things that his elder sister did while at his age or even what his age mates do like playing peek-a-boo and mimicking expressions and gestures. Deji was taken for a check and it was discovered that he is autistic.
Parents never want to accept that their child (or children) has a health challenge so some live in denial but medics have affirmed that early discovery ideally by the age of eighteen months–makes a huge difference because the younger the child, the greater the impact of treatment on symptoms of autism. Treatment is said to be able to reduce the disorder’s effects and help the child grow and thrive.
Autism Spectrum Disorder (ASD) is a complex, disabling, lifelong neuro-developmental group of disorders, which affect a child usually before the age of 36 months. Impairments in ASD affect virtually all aspects of the child’s functioning. However, three key areas are majorly affected. One of these areas is the area of social skills from which the term “Autism” was derived. The other two core areas of deficits are with communication and behavioural skills.
The 2nd of April every year, is World Autism Day and this year again, GT Bank in collaboration with Blazing Trails International Centre, are putting together a week’s activity to create more awareness about autism.
A team of about seventeen consultants from the US including few Nigerian consultants on ground that include psychiatrists, psychologists, behaviour analysts, speech pathologist, physical therapists, occupational therapists, pediatricians and more are giving free consultations, including assessments and diagnosis at LUTH from 2nd to 6th of April and from 8th-9th of the same month, and there will be a symposium at Muson Centre.
According to Anna Lamikanra, a medical practitioner and the executive director of Blazing Trails International Centre, “we are driven to help children with disabilities live a meaningful life. It is difficult in many countries to get across to people with children with disabilities even till the child grows to adulthood so it is important to start early so they can be part of the economics of the country. Awareness level in Nigeria is good but can be better. We have spoken to people who said their in-laws think it’s their fault; some think it is spiritual and so on.
“It is better to find out what works best for a particular child because it differs. I like people to know that autism is here and will always be around. The reasons may not be known but we need to know that these children need to live a meaningful life and they have to be assisted. It is one of those conditions people hide from the public. Nigerians have been receptive but there is more work to be done,” Anna concludes.
Echoing the same line of thought with Anna is Shirley Marks, a board certified psychiatrist also from the US. According to her, “this is the third year we are participating in collaboration with GT Bank and we are doing evaluation. Some have been diagnosed already and some don’t have it at all. We give the parents guidance and begin to work with the families and see long-term follow up. We are comforted with the awareness level which is high here because we have 1,500 people who have registered. The information I am getting not only from word of mouth but from physicians is that there is a form of denial; some feel it is a curse or a spiritual issue and that it will go away.”
“One of the challenges with autism is that the social interactions are delayed and people with autism need to be assisted. In America, the law is there to provide services for the disabled and that helps but you don’t have that here in Nigeria nevertheless, advocacy can help promote that cause. Generally, even in America, we have those who are in denial too. But like I said, the law helps them,” Shirley quips.
Autism is actually a subtype of a class of disorders known as Pervasive Developmental Disorder (PDD) and there are five of these disorders which include Autism (Autistic disorder); Asperger syndrome; Rett’s disorder – also called Rett’s syndrome; Childhood Disintegrative (CDD) – sometimes referred to as Heller’s syndrome or disintegrative “psychosis” and Pervasive Development Disorder Not Otherwise Specified (PDD.NOS) – sometimes called a typical autism.
Autism is one of the fastest growing serious neuro-developmental disabilities in the world that generally appears before the age of 3yrs. Autism is more common than childhood cancer, diabetes and AIDS combined. Approximately 67 million people worldwide are affected by autism and about 40% of children with autism do not speak. If one identical twin has autism, the chance of the second twin affected is about 90%. In families with one child living with autism, the risk of having a second child with the disorder is approximately 5%….which means 1 in 20. Autism affects boys more than girls in a ratio of 4:1 and children living with autism are very prone to sexual abuse. There is a huge burden of care on families with children living with Autism and divorce rates are high in families with a child living with autism. Sadly, like some other medical conditions, autism is treatable but has no cure.
Speaking about the prevalence of autism in Nigeria, Maymunah Kadri, a psychiatrist and Mental Health advocate revealed that “1 in 145 children are autistic, because the screening was among children with intellectual disabilities. In 2011, prevalence of autism spectrum disorders was 0.8% in a south eastern hospital and this means 1 in 100. The management is multidisciplinary; it involves a cocktail of interventions. The team includes the psychiatrist, psychologist, speech and language pathologist, occupational therapist, special educator, behavioural analyst and so on. This makes the management expensive especially in our country Nigeria where there are no support services for individuals living with autism.”
Speaking on the way forward, Maymunah suggests that “having the Disability Act passed will go a long way. Other necessities include having child friendly hospitals, subsidised or free healthcare for children with special needs, encouraging business friendly environment for individuals with special needs and finally, more and more advocacy.”