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Care for children with autism: Uninspiring stories of parents

By Mary Agidi

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The birth of a child is supposed to be a rewarding journey filled with love, joy, and fulfillment for women, and it is so for some mothers.

However, for mothers who gave birth to children with autism, the reverse is the case, as this motherhood journey often comes with unique and significant challenges.

According to the Centers for Disease Control and Prevention, Autism Spectrum Disorder (ASD) is a developmental disability caused by differences in the brain. People with ASD often have problems with social communication and interaction, and restricted or repetitive behaviours or interests. People with ASD may also have different ways of learning, moving, or paying attention.

Traits of autistic children

Autism mothers face a multitude of hurdles that can impact their emotional well-being, relationships, and overall quality of life; from navigating the complexities of diagnosis to managing daily routines and advocating for their child’s needs.

People with autism have trouble understanding what other people think and feel. This makes it hard for them to express themselves, either with words or through gestures, facial expressions, and touch.

The moment a child is diagnosed with this brain disorder, the mother would be overwhelmed and emotionally drained considering the task ahead of her to raise the child.

From recognizing early signs to seeking evaluation, and diagnosis and facing shame and stigmatization, autism mothers often face uncertainty and anxiety about their child’s future. The stigma and misconceptions surrounding autism can add to the stress, leaving mothers feeling isolated and alone.

Autistic mothers recount tales of rejection and financial constraints

For Autism mothers who often juggle multiple roles and responsibilities, balancing the needs of their autistic child with those of the family, business, and career, can be challenging, leading to feelings of guilt and exhaustion. Even, finding time for self-care and maintaining personal interests can become secondary to the demands of caregiving, further exacerbating stress and burnout.

Sharing her ordeal, Ms. Adesola Alade, mother of a 12-year-old autistic girl, popularly known in their neighbourhood as Esther Ayaba, explained bitterly, her efforts to provide proper care for the girl from infancy, regardless of the societal stigma.

 As a single parent, she expended her earnings as an artisan to procure constant medications for the child till her current age, without help from any corner, including the father. Now, she is bankrupt due to financial constraints and could not afford payment for her shop.  She is back to living in a single room with two kids to fend for.

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At different times, she had been encouraged by some people to “put away” the child so that she could be free of the burden put on her finances due to the medical care for her.

However, this challenge does not discourage her from yielding to the family’s pressure to dispose of the girl, as she was termed a burden for her.

Nevertheless, 45-year-old Ms. Desola is strong-willed and determined to ensure her autistic child is educated like other children, probably because she is her first child.

Asked if the girl was once enrolled in a school, she said that despite her meager income, she was  enrolled in a special school in Shagamu, Ogun State following an advice that the school provides needed care for its enrollees.

 The girl’s behaviour, in terms of social interaction and education, improved then but shuttling Akure and Shagamu was exhausting and this prompted Ms. Desola to withdraw the girl back to Akure, having been informed of the presence of such school at Oke-Igbo.

Unfortunately, the situation of Esther worsened during her short stay in the new environment as she developed other traits of autism that were not visible in her before.

As she shared her challenges with The Hope, she backed up her claims and efforts with pictorial evidence. Esther is back home now with bruises on her face which she sustained from the new school, she came back with different behavioural changes that further aggravate her condition, she lamented.

Undoubtedly, the provision of specialized services and therapies for children with autism can be costly and financially draining for families.

To know if there’s special care or assistance from the government for parents of autistic children which people like Ms. Adesola might not be aware of.

Expert says Nigeria lacks support network for autistic children

The Hope spoke with Ondo State Chairman of the Agency with Persons with Disabilities, Mrs. Folasade Arise.

She hinted that, though there’s no provision for autistic children in the law that established the agency, the agency still provides care to those who seek such in respect of their autistic children.

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 According to her, Lagos State has standard policy and care services for them, which are largely supported by Non-governmental organizations and international donors, unlike in Nigeria, where victims of this disorder are seen wandering around the street, constituting a nuisance due to neglect by their families, some developed countries have policies that cater for these categories of people. 

The Americans with Disabilities Act (ADA) is the most fundamental law protecting the civil rights of people with all types of disabilities, including those with Autism. The ADA provides civil rights protections to people with Autism similar to those provided to individuals based on race, colour, sex, national origin, age, and religion. It guarantees equal opportunity for individuals with Autism in public accommodations, employment, transportation, state and local government services, and telecommunications.

While some Nigerian autistic parents couldn’t allow their child to roam the street, some have resorted to extermination of the child, as there have been reported cases of parents killing their autistic child due to the lack of a strong support network in Nigerian society.

Ms. Desola’s case is one of the few autistic mothers who are resilient and determined not to hide or kill her child despite the stress involved, others either abandon them somewhere or kill them secretly.

As she waved off the mythical belief of her family that the girl was possessed, she resolved to pray for the child with a strong belief that she would be normal one day, saying despite her condition she was still useful for house shores.

Care for autistic children: How Nigerian government can weigh in

In his contribution, a caregiver who has been catering for over 7,000 children with different types of disabilities, including autism, through his NGO, Mr. Michael Sowunmi hinted that autistic children in Nigeria suffer neglect due to the misconceptions about their personalities.

He said:” Nigerians misunderstood autism, leading to fear, isolation, and shame for families which led to lack of awareness and stigma. Special needs education is scarce, and some schools reject autistic children altogether. “

According to the Raising Stars Africa CEO, specialized care for this category of people is expensive; placing a burden on families, hence, the reason most parents of autistic children abandon them.

As one of the non-governmental organizations in Lagos state that are committed to the cause of catering for this type of children, he revealed that Raising Star Africa has solely renovated three inclusive schools to make education and care accessible to children with disabilities and train teachers on life skills to be able to cater for autistic children; rather than waiting for government.

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He affirmed that NGOs like his in Lagos state took it upon themselves to continually create awareness and advocacy events to amplify inclusion and reduce stigmatization and marginalization of autistic children in the social and educational communities.

He advised governments at all levels to increase awareness campaigns about autism, invest in Specialist Training by training more doctors, therapists, and educators to improve diagnosis and support.

Sowunmi emphasized the need for governments to establish and fund schools with trained staff to cater for autistic children’s needs.

“For the parents, they should seek support groups, seek early diagnosis, learn about their child’s needs, and fight for appropriate educational opportunities and support. With this we can help an autistic child thrive,” he added.

Level of awareness about autism low

In a research, “A Psychologist’s Perspective on the Taboo of Autism in Nigeria,” it was discovered that the level of awareness about autism in Nigeria is pathetically low. The research observed some level of awareness amongst those in the medical community but concluded that the extent of their knowledge is often limited. Most only know the symptoms and manifestations of “infantile autism”. The majority do not know that there are different forms of autism spectrum disorders (such as regressive autism); some don’t believe the condition is treatable; and nearly 70 percent have no clue as to where to refer cases and/or what to do even when sure about a diagnosis.

This was evident in the efforts of The Hope to get a medical expert who can authoritatively speak about autism. A general medicine doctor referred her to a pediatrician, the paediatrician declined interview saying that it was probably within the purview of a behavioral specialist.

 By raising awareness about the challenges faced by autism mothers and advocating greater access to resources and support services, we can work towards creating a more inclusive and supportive environment for families affected by autism, just like their counterparts in developed countries.

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