How families are finding strength in caring for children with autism in Nigeria

Autism or Autism Spectrum Disorder (ASD) are both terms used to describe a group of complex disorders of brain development for which no cause has been found. These disorders are characterised by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some people with ASD do very well in visual skills, music, math and art. Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between two and three years of age. Early intervention with proven behavioral therapies can improve outcomes.  People living with autism need special and individualized care and education in order to help them learn both academic and life skills.

To commemorate Autism Awareness Day on April 2, many organisations around the country organised awareness drives and walks. The C.A.D.E.T Academy brought together families, care givers and partners to share stories, successes and challenges of caring for children living with autism, in its first ever Autism Family Support and Stakeholders Forum.

Dennis Shatima, a pediatric neurologist and the chief consultant pediatrician at the National Hospital, Abuja, described the presentation of autism in a child in three major areas; “language; non-verbal communication or speech delay;  socialisation; (ordinarily a child will run to you when you come into a room but when you see a child running away from you, avoiding contact or getting preoccupied with a toy,  that should be a warning sign) and thirdly behavioural;  they like doing the same thing over and over again, and if they like a toy they might even lie on the bed with it and any attempt to touch the toy will result in great anxiety. These are some of the signs that a child who falls under the spectrum of autism might present.”

He said autism cannot be treated overnight. “I always tell parents it’s a developmental challenge, so you measure improvement in months not days. When it comes to autism, the response is a process; it needs a lot of patience, perseverance and intervention by specialists.”

A much debated issue at the event was the involvement or non-involvement of the government in helping families who are caring for children living with autism. Moses Ntuen, a legal practitioner came to the forum with his wife and two kids, one of whom has autism. “Taking care of children like this is a full time job, full time in the sense that from the care centre to the home the child must receive the same pattern of care and training.” He added that with parents having to work to pay for the care and education of their children, it becomes difficult for them to give the attention required unless one parent stops working. “The centres do not give this treatment for free. If parents work so hard and pay so much for the care of the child, how do they just leave their work, sit back to take care of the child? How do they feed? This is where the society comes in, that is where the government should help. In other settings, these children are not seen as children with disabilities, they are seen as children with special needs, and these needs might be a bit more challenging, but with special care, they can mostly all become valuable members of society.” Parents with children with special needs are caught between a rock and a hard place in Nigeria.

He called on activists for autism awareness to advocate for greater government involvement and partnership in assisting families caring for children living with autism. “If the government gets involved, care centres like Dew Drops will have more resources to grow the services that they provide. The issue is not going away, we cannot wish it away; as the population of the country increases, more children will be born that will have these challenges, so we need the government to do something.”

Angela Ikuomola is the founder of the Ephphatha Centre, inspired by her personal journey of helping her son develop successfully despite having autism.  She emphasizes the role of the parents in the care of children with autism, warning that parents have to stay involved. “You cannot expect the care givers to do everything for you. You have to be involved. That child will spend five to six hours at the centre and then come home. You have to know what he has learned at the centre and continue from there, and to do that you have to be well informed, and be equipped.  Behind every child that makes progress is an actively engaged parent.”

She encouraged parents who were struggling with their child’s diagnosis to stay the course. “I know it feels like, oh my goodness, what am I dealing with, but the truth is that we have countless positive stories. Special education is needed so that child can learn to live an independent life.  You are going to make sacrifices, you will spend some money, and drop some luxuries, to focus on your child. It’s not easy, but you should look at the end point, the goal of what you are doing… ” She also encouraged the audience to use the Autism Treatment Evaluation Checklist (ATEC Score) to evaluate their child’s progress.

Ada Ezeokoli