Autism Not A Spiritual Problem, Says Izuwah

By Bassey Udo, Asst Business Editor

When Doris Izuwah graduated from Abia State University in 2000, going back for her doctorate may not have been part of her immediate career plans. But, a year and a half later, fate altered all that, as she was faced with a peculiar challenge she was determined to deal with, if not for her, for the sake of millions of families of the world and their children that may be enduring pains from a strange ailment.

Her son was diagnosed of autism, a neuro-developmental disorder characterised by impairments in social interaction and communication as well as repetitive behaviours often manifested in children before their third year.

Children with autism do not have speech. If they have speech, it might be delayed or abnormal. They do not know how to interact or play with other children. They are always aloof and into themselves. They are indifferent to their surroundings. Some do not even know they exist, neither are they aware that other people exist.

They do not understand social boundaries or cues. If they are attracted to any particular thing one is wearing, they can grab and pull it from the owner without any care. They do not know that they are not supposed to touch somebody inappropriately.

Though the experience vary, but some usually have sensory perception impairments that makes victims to recoil at some sounds, while some might refuse to eat, avoid being touched or cuddled. Yet, others are restless with sleeping problems. They are usually hyperactive. Some can work on their toes. Some can be quite destructive. Some can indulge in self-injurious behaviour. They can hit or beat themselves up as well as other children for no just reason. They do not know how to play with toys. They can bang it on the wall. They cannot pretend in play. Some times, people might think it is a spiritual problem. They do not have eye contact. They cannot look at somebody in the eye to understand what is happening or how they feel. Most of them do not decode facial expressions. Whether one is frowning, angry, sad or laughing, it does not make any meaning to them. If one is crying or laughing, they do not understand what it means. They do not know how to behave, whether in public or private. They can, without any reason, roll on the floor, scream and shout. They can even start to giggle and laugh heartily, when there is nothing around them that appears to have elicited such behaviours.

For Izuwah, her son had lost his speech and could hardly communicate a single word, as children his age are wont to do. In an environment without the basic facilities to diagnose the problem, which most people erroneously say has spiritual foundation that has no cure, the Izuwahs became desperate. They took their son everywhere for a behavioural therapy, including the United States and United Kingdom.

But, one of the ways Mrs. Izuwah opted to get to the roots of the problem was by sharing her experience with people during conferences, seminars and training programmes she attended in the United States. Besides, she decided to begin to work by correspondence to acquire the necessary training on how to treat and take care of children with autism.

Her medical background suggested there was a biological issue in the case that could be explored to get to the roots of the problem. She would not accept claims that autism was a lifetime disability that has no cure, unlike some parents who even harbour the superstition that it is a spiritual problem that has no medical solution.

Samples were collected from the son and sent abroad through couriers for tests in several laboratories, while results were returned through email. The drugs constituted mainly of specialised food supplements that cost a fortune to bring into the country. Perhaps, she may not have known that was the beginning of her family’s campaign to ‘defeat autism’.

Today, even as the son, who was six last February 3, has recovered, rather than continue to dwell on the painful experience of their son’s painful predicament, the Izuwahs have opened a centre, Defeat Autism in Nigeria (DAIN), for the purpose of accepting other families in similar painful situations, to teach them that there is hope for children with autism and related disabilities.

DAIN comprises OLG Health Foundation and Autism Centre, Port Harcourt; Zamarr Learning Institute, Abuja; Hope School, Abuja, and Patrick’s Speech and Language Centre, Lagos.

During a recent special awareness project in Abuja, DAIN, which is an alliance of private autism service providers and parents of autistic children, educated the people on the challenges of autism. The ‘DAIN Awareness Walk’ took participants to the National Assembly, Federal Ministries of Health, Education and Women Affairs as well as the National Agency for Food, Drug Administration and Control (NAFDAC).

During the exercise, project co-ordinator, Dr. (Mrs.) Doris Izuwah, identified autism as the third most chronic childhood ailment in the world, with one in 150 children affected, while a child is diagnosed with autism every 16 minutes.

Nigeria, with a population of about 140 million people, analysts say, runs the risk of losing one million children to autism, since children suffering from the ailment always have difficulty perceiving their environment.

Izuwah said since these children need supportive intervention by government, groups and individuals to help them function in the society, the main objective of DAIN was to provide the platform to combat the problem.

According to her, the idea of awareness campaign was to provide the scientific evidence to parents that autism is not only bio-medically definable, but also treatable, with early intervention as the key to successful outcome.

At the National Assembly, the group submitted a petition demanding legislations, like America’s Disabilities Act, Combat Autism Act and the Expanded Promise for Individuals Living with Autism proposed law currently before the U.S. Congress, to help combat autism and other disabilities in the country.

Other demands included a formal declaration by government that autism is a threat to the life of the Nigerian child as well as the future of the nation, while the screening for autism should be made mandatory for every predisposed Nigerian child before second birthday.

Besides, the group also called for a law mandating all Federal and state ministries of Health to provide autism care facilities, ensure that importation of Biomedical Autism Care supplements are duty/tax-free, support non-governmental organisations (NGOs) involved in the establishment of a National Autism Research Centre for excellence, while laws should be made demanding adequate funding to support these facilities.

Earlier, Izuwah had called for special attention for babies by government at all levels to check the spread of autism, saying due to high cost of procuring the specialised food supplements required as cure for the defect, government’s intervention was necessary by way of subsidy on drugs and the provision of infrastructure to cater for the peculiar needs of the patients.

She identified the major challenge to the problem as inadequate information, data and statistics about autism in Nigeria, pointing out that with adequate education and awareness, the problem could be checked by giving special attention to the early stages of the child’s development to detect its symptoms.

"There are developmental milestones in child development. From six months, a child should be able to coo and babble and have some social cues. When the mom is coming home, the child should be able to show some excitement. If the child is not showing all these behaviour patterns, the child should be watched closely.

"At the age of one, a child should be able to say one word or play with some toys without getting hurt. At the age of two, the child should be able to say a few words like mama, papa, and do a lot of other things. The child should not be excessively hyperactive. If the child is not meeting the various developmental milestones, the child should be examined immediately," Izuwah maintained.

Government, she said, can lay the foundation for elimination of autism among Nigerian children by rescheduling the nation’s vaccination calendar.

"Government should review and put in place a policy that would make it compulsory for every child from the age of six months to be screened for defects in their developmental milestones," she said. Between the ages of 12 and 16 months, Izuwah urged government to establish schools dedicated for autistic children and related disabilities, so that they can be properly taken care of to avoid becoming a problem to themselves, their families and government as a whole.

"Government can also help set up a world-class laboratory to carry out these tests. Currently, all investigations on autistic patients are done abroad at huge costs. If government is involved in these ways, it would reduce the cost and help subsidise the burden of parents, particularly those who cannot afford it."

On challenges the group is facing in creating awareness about autism in Nigeria, Izuwah identified funding as key, saying for one to create effective awareness, one must have adequate financial assistance to be able to produce the banners and other publicity materials.

"A lot of people in this environment do not know what autism is, and that it does not go away; that they grow into autistic adolescents and adults. People need to know that it is not a spiritual problem. Often people do not even get to see them, because after they have been diagnosed, they do not come out. Their parents hide them away. "The people do not believe that something can be done to mitigate the problem. That is why it is important that people should know first that there is a problem called autism; that autism is not a white man’s disease; that it is in our midst, and knows no socio-economic boundaries and racial values.

Though she traced the problem to the genetic predisposition of the parents, relating to the presence of heavy metals like mercury, lead, aluminium, etc. in their system, which can make a child to have memory problems, lose concentration, focus, and become unstable with behavioural issues.

She called for the removal of those elements from the child’s diet and replaced food supplements that would make for those things that should be given to the baby at the initial stage of his development.

On prospects of collaboration with foreign partners to establish specialised laboratories and research centres in the country, Izuwah said they have been working with laboratories in the U.S. and UK, adding that there are enough medical experts to manage these facilities if established in the country.

OTHER ARTICLES IN THIS SECTION

• Autism Not A Spiritual Problem, Says Izuwah