Investigation: After 74 years of discovery, autistic and special needs children still remain a challenge to science

Investigation: After 74 years of discovery, autistic and special needs children still remain a challenge to science

- Special needs children are a great challenge to parents who are getting confused daily on the best way to handle them

- Autism, a specie of special needs children, was discovered by scientists in America in 1943 but from then till now, scientists have not discovered cure for the challenge

- Non-governmental organisations have tried all they could to help the children manage the situation but they accuse of not contributing to combat the challenge

Mrs. Joan Abieme has a son who can be described as a child with special needs. His name is David. Unfortunately for her, David is her first son and not just first son but first born. After giving birth to the child on August 20, 2004, Mrs. Abieme has never been happy with herself. She feels pained that her first child has challenges which appear insurmountable or untreatable in the world of medicine.

She told NAIJ.com that her world seems to have crashed as her 14-year-old son whom her hope rests upon is not as happy as she wanted him to be. Her greatest pain is that the boy finds it difficult coping with normal school challenges as other children of his age. Besides the fact that he cannot attend normal school, his abnormal behaviour and speech impairment are a turn-off for her.

She explained that at times she would not want to take him to places with her due to his abnormal condition but she has no option than to take him along. Most times in public places like church, David is always the object of attention. This is so because his action draws attention to church ushers and other leaders of the church, even members who feel distracted by his uncontrollable behaviour.

Mrs. Abieme said: “Most times in the church I do not concentrate because he is always walking from place to place and disturbing other members of the church. At times when they hold him, he will refuse to listen to them and as such times, I feel uncomfortable and embarrassed in the church.”

Though Abieme is optimistic that her son would have his dreams fulfilled and live a normal life as his mates, she is yet to come to terms with the situation surrounding her son. For her, it is impossible to explain what transpired during the pregnancy period that resulted to giving birth to a child with disabilities, her only hope is in God to change the situation of her 14-year-old son and restore him all the systems to enable him behave as other children of his age.

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Abieme is among many parents in Nigeria who are getting disturbed on daily basis over the challenge of autism, cerebral palsy, Down syndrome, asphyxia, dyslexia and other neurodevelopmental challenges affecting children across the globe. Most parents are getting confused on the medicine to apply to change the condition of their children with no immediate solution coming their way.

It is estimated that, overall, between 500 and 650 million people worldwide live with a significant impairment. In a report by the World Health Organization (WHO), around 10 per cent of the world’s children and young people, some 200 million, have a sensory, intellectual or mental health impairment. Around 80 per cent of them, according to the report, live in developing countries including Nigeria.

An additional 8 per cent can be expected to have learning or behavioural difficulties, or both. These estimates were found to be useful in the detailed analysis of statistics on incidence and prevalence of childhood disability in the UNICEF study on children and disability.

A psychologist, Miss Mary Ojo, listed certain traits to be observed in a child that will qualify him to be a child with special needs. Miss Ojo told NAIJ.com in Asaba that special needs children are children with behavioural disabilities. These, according to her, are neurological disorders that might manifest themselves as difficulty listening, thinking, writing, speaking, spelling or doing mathematical calculations.

She said a child with special needs is one who requires some form of special care due to physical, mental, emotional or health reasons. Because each child is unique and has unique needs, no single approach to caring for children with special needs can be applied to all children, even those with the same feature of disabilities.

She said: “Every child is a special person, but some children may need special care due to physical, emotional, health or development needs. The kinds of special needs vary greatly. They may be simple allergies, developmental delays, a diagnosed disability or a serious illness. A child with special needs requires the same things that all of the children need to feel loved and nurtured, to feel good about themselves and to reach their fullest potential in becoming independent beings.”

She identified some occurrences that will show that the child is a special child. She said: “If the child rubs his eyes frequently; seems to have trouble following people or objects with eyes; holds head in a strained or awkward position, tilting it one side or the other, or forward or backward, when looking at an object; has trouble focusing or making eye contact; seems to have trouble finding or picking up small objects from floor or closes one eye when looking at distant objects. These are indication that the child needs special handling.”

Also, she said: “If a child has frequent earaches; frequent ear, nose, or throat infections or allergies; does not look to the source of voices or react to loud noises by four months of age; talks in a very loud or very soft voice; may have difficulty responding to a call from across a room; watches faces intently; does not use spoken language as expected for his or her age group; turns up volume on television or toys or has difficulty understanding what is being said, such a child needs special attention.”

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Speaking with NAIJ.com, a foundation identified four kinds of special needs children. They include those with cerebral palsy. These children, according to her, are like plastic, their faces could turn to their left while they are actually facing the other side.

There are also those with speech problem. Among these are kids with hearing defects, those with little vocal cord while some talk but not clearly.

The third group is mental disability. She explained that children with such disability are prone to forgetfulness. These are children who could be taught one thing several times but they will find it difficult retaining the knowledge.

She also identified emotionally-disordered children or what is commonly called autistic children. But, she pointed out that if a child is restless, that does not make the child autistic.

When they are sweating, it’s like they are mad, they can run from one end to the other, they come back but they can’t tell you what is wrong with them,” Iselebor explained. “Some who want to go to the toilet, instead of going straight to the toilet, they will run across the toilet, hit their heads on the wall and come back again, fall down, sweat and cry. But, by the time you know their life routine, you set a clock and alarm to monitor them."

For the psychological explanation for such abnormal behavior, Iselebor said it is chromosome disorder. Though she said medical science has no solution to the challenge, she traced the cause to women who fail to adhere to medical precautions during pregnancies.

Investigation: After 74 years of discovery, autistic and special needs children still a challenge to science

Dr. Leo Kanner of John Hophkins University who discovered autism in 1943

A doctor will tell a woman not to take alcohol during pregnancy or some women don’t know they are pregnant and continue taking medicine; that could disfigure a child,” she said.

A woman who doesn’t know she is pregnant and continues taking ginger, could affect the child. It hurts the child to the extent that when such a child is born, it may become physically challenged. The secret most times remains with the mother of the child forever.”

Mr. Olusola Bello, programme coordinator of Centre for Autism and Developmental Disabilities (CADD) in Asaba, also gave vivid details on special needs children with special reference to autistic children.

He said autism manifests in four major areas in children. One, it affects their social interaction. It affects their behavior, their communication, speech while in others, it affects their sensory.

For him, the cause of autism is not known to the world of science. “So far, with my level of understanding, till date, science has not actually identified the main cause of autism. Some say it is hereditary, meaning it is hidden in the family lineage and manifest in the most vulnerable children.

“Scientists have not really say this is the real cause of autism. I have not come across any scientist that says this is the cause of autism. A lot of research is still ongoing. Even in the United States where autism was first discovered in 1945 by a scientist called Leo Kanner, the cause is not known.

“Kanner, an American doctor from Johns Hopkins University, identified autism in some children he was working with. He carried out research on them and found out that some were doing well, others were not doing well. He discovered a behavioural challenge in several of the children he studied who acted withdrawn, removed from social interaction and became isolated.

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He tried to find out what was the cause but he could not. He looked at them not doing well socially and academically, he started helping them to cope with the challenges of life, so till date, scientists have not been able to find out the cause of autism.

“Some are also saying, it is a result of immunisation. Some groups in America who are fighting government say it’s a result of the normal vaccine immunization that causes autism. But none of these has been proved to be the actual cause of autism.”

Mr. Bello said society has not been fair to children with autism. He said in Nigerian communities, people see children with special needs as people with spiritual problems. “So, if a child is not doing well, he is having a psychological problem, many think it’s a spiritual thing. They conclude he is a witch and needs to consult the oracle for solution.

Investigation: After 74 years of discovery, autistic and special needs children still a challenge to science

Nigerian school children in need of proper health care. Photo: The Trent online

“Acceptance here, I can’t actually rate it, it is zigzag. Some people are truly accepting to help them, others do not. Some accept them to join the mainstream school. If you look at disability, it is broad. It takes a professional to identify and separate one from the other.”

Too often, these children with special needs are marginalized and excluded from society. They are less likely to attend school, receive medical care or have their voices heard. Many face daily threats to their survival in the form of poor nutrition or physical abuse.

Such children and their families constantly experience barriers to the enjoyment of their basic human rights in society. Their abilities are overlooked, their capacities are underestimated and their needs are given low priority. Yet, the barriers they face are more frequently as a result of the environment in which they live than as a result of their impairment.

On the positive side, there has been a gathering global momentum over the past two decades, originating with persons with disabilities and increasingly supported by civil society and governments.

In many countries, small, local groups have joined forces to create regional or national organizations that have lobbied for reform and changes to legislation. As a result, one by one the barriers to the participation of persons with disabilities as full members of their communities are starting to fall.

The inclusion of children with disabilities is a matter of social justice and an essential investment in the future of society. It is not based on charity or goodwill but is an integral element of the expression and realization of universal human rights.

In May 2002, heads of state and government under the United Nations General Assembly signed a statement endorsing the right of children thus:

“Each girl and boy is born free and equal in dignity and rights; therefore, all forms of discrimination affecting children must end.... We will take all measures to ensure the full and equal enjoyment of all human rights and fundamental freedoms, including equal access to health, education and recreational services, by children with disabilities and children with special needs, to ensure the recognition of their dignity, to promote their self-reliance, and to facilitate their active participation in the community.”

But the implementation of this right is still a matter of conjecture. Hence, Mr. Bello is not happy with government ineptitude to caring for children with special needs. For him, government tends to look at disability as a whole, grouping all into one. He said that is a wrong assumption. He said government is focusing more on physical disability, hence it has schools for the blind, deaf and the physically challenged.

“I have not heard in this country where government is having resources for children with autism. I have not heard of it. Maybe they are cooking it but like today none, compare to other nations like South Africa where they have at least six big centres where government is funding and even providing free services.

“Here, in Nigeria, government is not thinking in that direction. What happens in Nigeria is individuals setting up centres for children with special needs and autism. There are many of such organisations in Lagos. Some have children with autism, they decided to establish centres to cater for their children and other families who have autistic children. They bring professionals to help attend to the needs of the children.”

Bello said he would like a situation where government will fund big centres so that families with autistic children could go for care for their children. According to him, a lot of families are out there who do not know what to do. They don’t know where to go, they are confused.

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What we understand is that early intervention is the key. If there is no intervention when the child is growing up, the tendency is that when they grow old it becomes a problem to the family and to the society.

“Who knows some of those people roaming around the street are not mad people. It could be a result of issues like this and nobody cared for them long time ago. Since 1945 when autism was identified in America, is it not the same planet that we are.

“Same thing may have happened here. Those people roaming about, nobody taking care of them, I’m not saying so, but it might be because nobody took care of them. When there is no intervention, anything can happen.”

Ovie Ebireri, a public analyst, agreed that Nigerian government is not doing enough for children with special needs.

He said: “There is very little government and community support for families living with cerebral palsy. These families usually bear the burden alone. Facilities for treatment and rehabilitation of children with cerebral palsy are lacking. The manpower gap is enormous. There is no national policy framework and no roadmap for treating cerebral palsy in Nigeria.

He believed that if: “Primary healthcare centres should be equipped with trained manpower and instruments necessary for efficient functioning of maternal, newborn and child care, the occurrence of these abnormalities will reduce.”

Medical experts warn pregnant women to be cautious of what they eat or give their children as they are growing up. This is because infections, stress, nutrition and many others are contributory factors that affect the wellbeing of the child. Evidence shows that things taken during pregnancy or before a child attains five years old most times affect the child in a negative way.

Government should fund research programmes in the field of cerebral palsy. Government should formulate policies that will assist and protect people living with disabilities, pass legislation that will ban the use of derisory words on people with disabilities as well as enact laws to ensure freedom of movement and social interaction of disabled persons within the community,” Ovie added.

Source: Naij.com

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