Autism and the Awareness Gap

Autism Spectrum Disorder is not a 'brave struggle', it is a celebration of the strength and enduring spirit of the human character. Read more...

The first time I heard about autism was in 2000, when I met Emeka (not his real name). I escorted my aunt to her friend’s house, with whose family we were to go on a picnic. While waiting for them to get ready, I watched Emeka, their 8-year old son, fumble with his shoe lace. He had insisted on tying them himself, but his brother, two years younger, finished doing the same thing several minutes earlier. We waited ten more minutes as he continued in vain but determined not to give up. I saw tears roll down his mother’s cheeks as she quietly left the sitting room; the pain would have been too much for her to bear. However, no one seemed as surprised as I was; they knew something I didn’t nor do most Nigerians.

Few minutes later, Emeka’s mum reappeared, her tears dried up. She went straight to Emeka and helped him lace his shoes, ignoring the boy’s protest. The 10-minute drive to the picnic the longest ride of my life. No one said anything. But once the kids were out playing on the field, Emeka’s mum smiled and I knew she was going to talk about what happened at the house anytime soon. I was not supposed to be part of a ladies’ day out, but that didn’t matter now, all I could think about was Emeka.

“He has autism,” his mum told me. Emeka is one of the more than a million Nigerians believed to be living with autism today. Many of them are still suffering from the lack of awareness on the condition. He was diagnosed with autism when he was three. Five years on, his parents still struggle to cope with his condition. “It gets easier but you never get used to it,” his mum told me.

Emeka’s parents knew very little about the condition when he was initially diagnosed. One of the most difficult things they have faced was trying to create a healthy support system for him. Emeka’s mum said it was very hard to do this; it was even harder for his siblings to understand that their brother was different in some ways.

After my encounter with Emeka, I realized that the world is yet to fully understand autism for what it is – a lifelong developmental disability that affects how a person communicates with, and relates to, other people.

Scientists are not certain about what causes autism, but it is likely that both genetics and environment play a role. The condition has no cure, but early detection can help in providing the right therapies and behavioural interventions that could bring about substantial improvement. Parents should watch out for some of these signs:

  • No pointing or babbling by 12 months
  • No single words by 16 months
  • No noticeable response to name
  • Poor eye contact
  • Excessive lining up of toys or objects
  • No social responsiveness

Autism is a spectrum condition. This means that while those with autism share certain difficulties, their condition affects them in different ways. Some are able to live relatively independent lives, others may have accompanying learning disabilities and need a lifetime of specialist support. Emeka’s mum said her son was in the middle of both, “sometimes he is able to do things by himself, other times he hardly gets by the most menial of tasks.” She said that prior to transferring him to a special school, his teachers in his former school sometime found it difficult managing him.

One of the biggest problems parents face is ignorance. More awareness needs to be created about autism. The incidence of the condition is increasing daily. The society needs to know more about autism and accept those living with the condition as part of the society. There are schools for people living in autism in Nigeria where the best system for teaching children with such condition has been adopted. There are also NGOs that are focused on helping parents cope with the challenges they face, as well as helping kids with autism lead better lives.

Emeka, now 23, is a first year student of Bio-Chemistry in a federal university in South-West Nigeria. While the average enrolment age into Nigerian universities is between 17 and 19, He gets off better than most people with worse variation of his condition. “He is not really a loner,” his mom, now a retired civil servant told me when I visited them recently, “he’s the type that prefers a few but very close friends.”

Emeka’s biggest asset seems to be his loving family, who have learnt to understand and support him through many challenges.