BY JOSFYN UBA AND KATE HALIM
These children demand more attention from their parents, family members and neighbours for survival. They are special children caught in the web of developmental disability at tender ages. They are autistic children.
Many parents whose children have been diagonised with autism sink into depression and keep asking the ‘why me’ question instead of bracing the odds and hoping for the best. For others, it foretells hard times because of the huge cost of caring specially for an autistic child. Nigerians, especially rural dwellers, stigmatize children with autism. Some of them even perpetrate the killing of these children in some Nigerian communities.
Autism affects girls and boys of all races, in all geographic regions and has a large impact on children, their families, communities and societies. The prevalence is currently rising in many countries around the world. Educating and caring for children and young people with this condition places challenges on healthcare, education and training programmes.
On December 18, 2007, the United Nations General Assembly adopted resolution 62/139, tabled by the State of Qatar, which declares April 2 as World Autism Awareness Day (WAAD). The World Autism Awareness Day resolution encourages all Member states to take measures to raise awareness about autism and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges.
World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. In addition, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe.
The National Institute of Neurological Disorders and Strokes (NINDS), Bethesda, USA describes Autism Spectrum Disorder (ASD) as, “a range of complex neuro-development disorders, characterized by social impairments, communication difficulties, restricted, repetitive, and stereotyped patterns of behaviour.”
Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form known as Asperger syndrome, and childhood disintegrative disorder and pervasive developmental disorder usually referred to as PDD NOS. Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group. Experts estimate that six children out of every 1,000 will have an ASD. Males are four times more likely to have an ASD than females.
According to the World Health Organization (WHO), autism is the fastest growing serious developmental disability in the world. More children will be diagnosed with autism this year than with diabetes, cancer and AIDS combined. There is no medical detection or cure for autism yet but early diagnosis and intervention improve outcomes.
While scientists are yet to fully understand what causes ASD, it is believed that both genetics and environment play a role. Researchers have identified a number of genes associated with the disorder. Studies of people with ASD have found irregularities in several regions of the brain. Other studies suggest that people with ASD have abnormal levels of serotonin or other neurotransmitters in the brain. These abnormalities suggest that ASD could result from the disruption of normal brain development early in fetal development caused by defects in genes that control brain growth and that regulate how brain cells communicate with each other, possibly due to the influence of environmental factors on gene function.
Diagnosis of Autism
Presently, there is no medical test that can diagnose Autism. Instead, specially trained physicians and psychologists administer Autism-specific behavioral evaluations. Often, parents are the first to notice that their child is showing unusual behaviors such as failing to make eye contact, not responding to his or her name or playing with toys in unusual, repetitive ways. For a description of early indicators of Autism, parents should learn the signs.
Events organized on World Autism Awareness Day include:
Panel discussions with autism experts, politicians and non-governmental organization (NGO) representatives. Informational events for parents of children with autism. Conferences and workshops for professionals working with people with autism, and artistic workshops for people with autism. It also includes the launch of educational materials for parents and teachers, and exhibitions of artwork by artists with autism. Special clinics are also organized for families dealing with autism to obtain consultations with pediatricians, educational psychologists and social workers.
Mrs Khadeejah Katagum Ronke, Founder, Zamarr Institute in Abuja has taken it upon herself to care for Nigerian children with Autism. Katagum has touched many affected homes, giving assistance, enlightenment and words of encouragement to families with autistic children within Nigeria and beyond. Her passion stems from filling a gap that people are reluctant to relate with when it comes to dealing with autistic children.
She noted that, “persons with autism do not see the world the way normal people see it. When such attitude occurs, we, in this part of the world seem to misconstrue it to mean something unacceptable to the society. In some parts of the country, they are labeled witches and hunted like animals. They require special care and attention not discrimination.”
Since 2007, the Zamarr Institute continually strives to create awareness and sensitize Nigerians on autism and other related behavioural disabilities through activities such as village talks in the rural areas, workshops, seminars and trainings, and fundraising events.
According to Dotun Akande, Founder and Proprietress of Patrick Speech and Language Center, Lagos, the general perception of autism in Nigeria is scary and nothing to write home about. “Autism is viewed as a spiritual attack, a curse, a mental disorder, a menace that people should avoid and a disgrace to the family.” Akande urges Nigerians to assist children living with autism by accepting them into the society. She revealed that most families consider these children a thing of shame and so, hide them at home instead of helping integrate them into the society.
Even though autistic kids have social challenges, they are different from children suffering from Down syndrome. Down Syndrome children have an extra chromosome, known as chromosome 21. They also have a physical presentation, a drawn face, while individuals with Autism have no physical presentation. The individual usually looks typical. There is also no chromosomal disorder in the individual with Autism. They usually have high or above average IQ.