People all over the world celebrate Autism Awareness Day, on April 2nd, every year, to raise awareness for those with autism.
Autism is a disability that affects how people perceive the world and interact with others. That is how they see, hear and feel the world around them.
Autism is a spectrum condition; as it affects individuals in different ways such as learning disabilities, mental health issues and other conditions.
Approximately one in six children have autism and more than 6 million people in the world live with an autism spectrum disorder.
Much progress has been made to support autistic people. However, there is still discrimination of autistic people in the society. The majority of autistic people continue to be victims of marginalizations, and abuse that lead to low self-esteem, inferiority complex and timidity.
There have been several efforts by both individuals and corporate organizations to tackle the issue of autism. Prominent of which is “Autism speaks”; an American non-governmental organization dedicated to promoting solutions, across the spectrum and throughout the life span for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of people with autism spectrum disorder, and advancing research into causes and better interventions for autism spectrum disorder and related conditions.
In Nigeria, a lady, Miss. Omotoke Olowu has taken the challenge to establish “The Autism Awareness Place” to create more awareness about the autism spectrum and advocate for an all-inclusive society where autistic individuals would participate in all societal activities without any form of discrimination and marginalization.
Speaking with The Vortex, Olowu explained that it remains the job of everyone in the society to create awareness about the autism spectrum to support autistic individuals and also assist in ensuring inclusiveness.
She said, “We have a lot to do to create awareness on autism. Autistic individuals find it difficult seeing the world from our perspective and that hinders their relationship with the rest of us. We cannot fold our hands and watch the discrimination these individuals face in our society and we have to stand up to the fight against all forms discrimination against autistic individuals”.
“Everyone needs to join the campaign as we create more awareness about the autism spectrum; it’s not a business for one person alone, but with a collective strength we can help support autistic individuals and help bridge the gap with society”, she added.
Olowu noted that with the help of volunteers, her organization has been able to carryout sensitizations and campaigns, aimed creating awareness about the autism spectrum and also pursue an all-inclusive society for autistic individuals.
She said, “We have more awareness this year than we had last year. People are getting to know more about autism spectrum and are becoming more willing to assist autistic individuals in societal activities. We’ve been able to achieve this through our social media platforms, door-to-door campaigns, road walks, and other channels”.
“As an organization, we have also supported children with autism through our initiative for free screening, art, craft and training. Our primary focus is on how we can integrate these children into school settings, partnering government at various levels; and all of this is in an attempt to end the stigmatization and discrimination of autistic people”, she added.
Autistic persons should be embraced, celebrated and respected. However, discrimination against autistic children and adults is more the rule rather than the exception. In many countries, particularly in Nigeria, autistic persons lack access to services which would support, on an equal basis with others, their right to health, education, employment, and living in the society. When available, services are often far .
Autistic persons are particularly exposed to professional approaches and medical practices which are unacceptable from a human rights point of view. Such practices justified many times as treatments or protection measures, violate their basic rights, undermine their dignity, and go against scientific evidence.
In an interview with The Vortex, Mrs. Lydia Okocha, a psychologist in Port Harcourt explained that autistic individuals should be handled with utmost respect and not exposed to all forms of unfair treatments in the disguise of medical practices.
She said, “Autistic children and adults face the proliferation of medicalized approaches relying on the over-prescription of psychotropic medications, their placement in psychiatric hospitals and long-term care institutions, the use of physical or chemical restraint, electro-impulsive therapy, etc. This may be particularly harmful and lead to the deterioration of their condition.
“The autism spectrum should be understood from a broader perspective, including research. We call for caution about enthusiastic attempts to find the causes of autism and ways to “Cure” autism through sophisticated but not necessarily ethical research. Autism as a condition is very critical and the practice and science of medicine should not be used to cause the suffering of people”. Mrs. Okocha added.
The situation in Nigeria seems to be the same as in 1943 America when children with autism were thought to be schizophrenic, mentally retarded, and when maternal deprivation and spiritual causation held sway as explanations for etiology. In many parts of the country, particularly in rural areas, persons with autism and disabilities are thought to be possessed and evil.
The level of awareness about autism is pathetically low. There is a little bit of awareness amongst the medical community, but mostly to the extent that they know the symptoms and manifestations of “infantile autism”. Majority do not know that autism spectrum disorders have forms (e.g regressive autism), some don’t believe the condition is treatable and nearly 70% have no clue as to where to refer cases and or what to do even when sure about a diagnosis. We still have medical doctors who say that autism is rare, foreign and “oyibo” wahala (white man’s problem).
Many children in Nigeria with autism are either not diagnosed or misdiagnosed. They either end up being hidden at home or “lucky” to be clubbed with the deaf, dumb or mentally retarded children. In rural area where there are no psychiatric hospitals, majority end up on the streets as insane fellows.
The legal framework necessary to support individuals with autism is another deficit area. The trend in most parts of the world is that “No child should be left behind”, “Every disabled child matters”, “No exclusion”, “free basic education to all”. However, the narrative in Nigeria is such that one may get the impression that society and the government are saying, “Autistic children are hopeless economic liabilities or you must be deaf, blind or physically handicapped to deserve any support”.
There is no recognition of autism as a disability and nothing; absolutely nothing is available to meet the needs of those with the condition.
The worst hit are millions of families in the rural areas where there is hardly any school for typical children talk less of facilities for challenged ones.
Because there is no welfare programme in Nigeria in terms of Government funding for the special educational and professional services needed by these children, the burden is on parents. The few affluent ones prefer to send their children abroad. If they must reside in Nigeria, they prefer to bring in experts from South Africa, USA, UK and so on who would work with their children ALONE! Often times, the cost of bringing in such experts would otherwise be more than sufficient to train 30 local therapists.
The world’s most influential autism associations like Autism society of America couldn’t have succeeded were parents not actively involved. The IDEA (individual with Disabilities Education Act) was a product of intensive parents’ network and campaign. In Nigeria, efforts at forming viable parents group and professional groups are constantly being muffled by greed and class ego.
Nevertheless, Autism Associates and other likeminded groups appear serious about making a difference and we believe that there is hope for the over 190,000 children in the country who are yet to be diagnosed.
But the government can do more in ensuring an all-inclusive society for autistic individuals through establishments of specialized schools for them and provide occupational therapist in public schools, health care coverage for individuals with autism and a change in the educational curriculum to accommodate their peculiar needs.
And in line with the theme for the world Autism awareness day 2019 which says, “Assistive Technologies, Active Participation”, we need to focus on what kind of assistive technology can be produced or provided to improve the participation of children and adults with autism to foster inclusiveness in Nigeria.