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

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It’s Autism Awareness Month this April and several groups in Nigeria are advocating for greater awareness and engagement in providing care for this special segment of our population. In this week’s piece, we highlight the challenges surrounding autism care in Nigeria, focusing on one special needs group in Abuja where parents and caregivers meet, to share and advocate for the needs of children with autism.

 

One of the things we observed was that at an early age he reproduced everything he saw on the screen…  He could spell all the colours, he could produce Channel’s logo, AIT’s logo, and if you gave him sheets of paper he would just keep on drawing… but he could not talk, he would not socialize.”  Mr. Babatunde Akano is talking to a room of parents and caregivers in the NAF Conference Centre, Kado, explaining when his son, who is now 7 years old, first began showing signs of autism.

He says that at first he didn’t take the speech delay seriously, because his son would gesture for everything that he wanted. That changed one day when he disciplined him out of frustration with his non-verbal communication. “Whenever he cried, it was so intense, you could feel the pain. You could tell that he was hurting inside. I realized that we were not communicating on the same level.” At this point, he started considering the thought – could his son have autism?

Babatunde Akano shares his story at the Autism Family Support Forum. Photo Credit: Ada Ezeokoli/Nigeria Health Watch
Babatunde Akano shares his story at the Autism Family Support Forum. Photo Credit: Ada Ezeokoli/Nigeria Health Watch

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.

[wpdevart_youtube]PAKEx1G5xLA[/wpdevart_youtube] A documentary called Autism Through Our Eyes, shot by three students who have autism.

Mr Akano and his wife set out to research everything they could find online, and in the process made an important discovery for their son. “I have loads of videos, TED talks, about all the issues,” he said, adding, “We got to know about C.A.D.E.T  Academy through the internet. I told my wife until we can enter into their world, we may not be able to reach out to them and communicate, until we are able to speak their language. ” The Comprehensive Autism and related Disabilities Education and Training (C.A.D.E.T) Academy is a special education needs provider in Abuja that was founded in 2013 by Mrs. Omolola Aneke.  Its non-profit arm, The Dewdrops Community Centre for Special Needs, was established to improve access to special education to underserved and low income families.

Omolola Aneke, front centre, is the Executive Director of C.A.D.E.T. Academy, which provides special needs education for children with various learning disabilities, including autism. Photo Courtesy C.A.D.E.T Academy.
Omolola Aneke, front centre, is the Executive Director of C.A.D.E.T. Academy, which provides special needs education for children with various learning disabilities, including autism. Photo Courtesy C.A.D.E.T Academy.

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.

Dr. 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.”

Dr. Dennis Shatima, a renowned pediatric neurologist, speaks at the Autism Family Support Forum. Photo Credit: Ada Ezeokoli/Nigeria Health Watch
Dr. Dennis Shatima, a renowned pediatric neurologist, speaks at the Autism Family Support Forum. Photo Credit: Ada Ezeokoli/Nigeria Health Watch

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.” This process means time, and money, spent on special interventions. Aneke pointed out that professionals need to be aware that “families of a child with disabilities may be at risk of financial hardship, strained emotional relationships, a restricted social life, higher stress levels, modifications to family activities and goals, and time restrictions caused by care demands.” She said that in Nigeria, about 75 percent of families with a disabled child live, or have lived in poverty, and it is estimated that the cost of bringing up a disabled child is three times the cost of raising a child without disability.

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. Barr. Moses Ntuen 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.

Barr. Moses Ntuen and his family call for advocacy to the government for greater involvement in supporting parents of children with autism. Photo Credit: Ada Ezeokoli/Nigeria Health Watch
Barr. Moses Ntuen and his family call for advocacy to the government for greater involvement in supporting parents of children with autism. Photo Credit: Ada Ezeokoli/Nigeria Health Watch

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.”

Mrs. 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.”

Angela Ikuomola whose son has autism, encouraged parents at the Autism Family Support Forum to get involved and stay the course for their children. Photo Credit: Ada Ezeokoli/Nigeria Health Watch
Angela Ikuomola whose son has autism, encouraged parents at the Autism Family Support Forum to get involved and stay the course for their children. Photo Credit: Ada Ezeokoli/Nigeria Health Watch

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.

Babatunde Akano said that while there are clearly challenges for parents, he looked forward  to a reunion, maybe 10 years down the line, on a bright day with all the children. “It would be great to see how well they have all done in whatever fields of endeavor they go into.”

For him, those living with autism are not disabled, but rather are simply differently abled. He referred to an example that has stuck with him – an article about an autistic man who can draw from his mind, who drew the New York Skyline. He went looked at it for 20 minutes, and in three days reproduced the entire skyline.  “Every autistic child is a special child, and has some special understanding and probably sees the world in a different way, and one day, the world will need that knowledge.”

[wpdevart_youtube]saPgAv2Q4js[/wpdevart_youtube] A documentary about living with autism in Nigeria by C.A.D.E.T. Academy and DewDrops Community Centre, Abuja

Managing children with autism is a huge burden and one that should not be left for those parents of children with autism alone. This really requires every society to organise itself to respond in order to share the added pressures. This may be through subsidies to centres like C.A.D.E.T. Academy or Ephphatha Centre, or it may be via grants to the parents of these children so that they can afford to spend more time with their children. However this is done – these are the indices that actually define “development” in a society or country, i.e., how we come together to take on common challenges using common resources. If you think it does not concern you, we invite you to think again. The answer is obvious…

But while we wait for our society to organise itself, why don’t you do something? Reach out to your friend or acquaintance who has a child with special needs and ask them… how you can help.

Ada is the Editor of Nigeria Health Watch. She has a B.A. in Communications - Journalism and Creative Writing, and an M.A. in Ancient Near Eastern History. She is a documentary photographer. She tweets as @adankemeze.

Discussion5 Comments

  1. Kate Onyegbule

    I appreciate the contributions and want to be part of it all. My family is in dire need of help. Our 14 years old son is autistic. We reside in Owerri and help is far fetched. His academics has been quite cumbersome
    and he is out of school.
    We are handling him at home but it has been so so difficult.

    • Although this is coming late I hope it proves helpful. Join a community of people living with autism on Facebook. Supports like this are very helpful.

  2. I appreciate the contributions and want to be part of it all. My family is in dire need of help. Our 14 years old son is autistic. We reside in Owerri and help is far fetched. His academics has been quite cumbersome
    and he is out of school. We have been managing him at home. Thanks

  3. Nice post! when i went through this post i would like to introduce the team Alpha to Omega They are a educational institution which is specially made for education for special needs children.It is located in Singapore and in India .I had experienced the difference in my daughter when she started schooling in Alpha to Omega.You could contact them for any assistance.
    http://alphatoomega.org/singapore
    Thanks

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