A voice for children and adults living with autism

By Victoria Ngozi Ikeano

Nigerians, especially the elites are slowly being aware of autism. Still there is a big gap in our understanding of it for, majority of Nigerians as elsewhere in Africa ascribe negative things to it. It is generally associated in this part of the world with mental derangement. And so, it is that many parents with autistic children often lock them up in the house because of the stigma that goes with it. They are usually in denial. Disappointment, guilt and fear characterize these parents. Some families, under pressure from outsiders, namely, friends associates, relatives even consign them to traditional and religious homes for ‘healing’ in a desperate bid to find a cure which however, comes to nought.

Each child is a gift and loan to the parents for they can be taken away from them by the Almighty at any time. No matter the physical condition in which a child is born into a family both the child and all those connected with it (parents, siblings, etc.) will benefit spiritually through the experience in offering genuine love and care to the child. Autistic children are not mentally ill people as such but people with special needs like other physically handicapped persons.

We have transited over the years from referring to aforementioned persons as blind/deaf persons, disabled persons, people with disabilities to physically handicapped, physically challenge persons to the current nomenclature of ‘people with special needs’. The term ‘special needs’ apply to persons with one form of disability or the other. People with autism are referred to in some circles as ‘persons with slow learning abilities’ and ‘persons with delayed development’. Experts say this is not altogether true as autistic people suffer from multiple disorders such as communication, behavioral deficiencies. For this, they require more special attention with multiple specialists. The term, ‘Autism Spectrum Disorder’ (ASD) is now in use by experts to describe it and they say ASD ranges from mild to severe. They stress that it is a disease which has no cure but can be managed. So, it is a life-long condition once one is diagnosed of it. Notwithstanding that physically handicapped persons have now been accepted in our society more or less, in that there are now formal, organized institutions and unions to cater to their needs and welfare, autistic persons are still largely disadvantaged.

Thanks to the GT bank which over the years has been raising awareness on autism by bringing together experts from various parts of the world to talk about and give useful information/insight on how to better handle various needs of autistic children. This year’s Autism conference which held on Monday and Tuesday was the tenth in the series. And it was unique in that it was held online because of COVID-19. This means that more people could join in from any part of Nigeria (indeed the world) than the relatively fewer people that could have made it were it held in a particular physical venue, because of travel and financial constraints. The resource persons made their presentations from their bases. This is one advantage of this COVID-19 pandemic – webinars, that is, online conferences, seminars, workshops etc., are getting popular, leading to the democratization of information, knowledge. That is how I joined in although I could not listen to all the presentations as my data ran out.

One commends GT bank for this initiative. Corporate social responsibility is not just about donating money, equipment to government/society to fight a particular cause or donating certain structures to them, it is also about disseminating/sharing knowledge on something that is beneficial to people. When this knowledge concerns a particular, minority segment of society that are often overlooked and disadvantaged, it makes it a noble endeavour. Knowledge of course, cannot be quantified in naira and kobo.

With the theme, ‘Autism: Focussing on Similarities rather than Differences’ the two-day conference kicked off with a keynote address by the chief executive officer/managing director of the sponsoring bank, Mr. Segun Agbaje. The first paper on the topic, ‘Creating a community of support for people living with Autism’ was given by the senior vice president, Public Health and Inclusion, Autism Speaks, USA, Dr. Andy Shiih; Dr. Pamela Dixion Director of clinical services and Inclusion, Autism Speaks, USA, presented the second paper titled, ‘Implementing training in the home post-COVID-19’, while Dr. Loretta Burns, Founder/chief executive officer of Advanced Behaviour and Educational Clinics, USA took on the topic, ‘Re-imagining learning spaces for children with special needs. It was stressed among other things that home lessons for autistic persons has to have frequent breaks apparently because of their relatively low attention span. Later in the day, Dr. Brook Ingersoil a psychologist and director, MSU Autism Lab, USA, presented the fourth paper on ‘Using Telehealth to deliver parent training’; Lanre Duyile, Board Certified Behaviour Analyst, Canada, spoke on ‘Addressing Behaviour difficulties in children and adults’. The last paper for the day was by Maleshwane Mauco another Board Certified Behaviour Analyst from South Africa whose topic was on ‘Managing eating difficulties with Autism’.

The topics are indeed diverse touching on various aspects of the special needs of autistic persons. They emphasized the need for evidence-based data, constant research to monitor things to be able to identify problems and their solutions. The question and answer sessions were also instructive, with parents with such children making enquiries too. It means such parents are now coming more and more to the open. The presentations were by slides but the speakers were happy to make their papers available online and also dropping their contact addresses for those wishing to get in touch for more or specific information or to be linked with some other organisations working on autism. They spoke of upcoming publications by the World Health Organisation and their own organisations based on research findings.

The second day was devoted to discussions, first on the topic ‘Cure versus Acceptance of Autism’ and the second,’ Parents forum: Preparing a child for independence/interdependence’. Needless to state that there were parents with autistic children on this panel. Families were warned against being deceived by people who profess to be able to cure or have drugs that cure the disease. They also revealed that an autistic child cannot be totally independent by way of undertaking certain activities on their own as they still have to be carefully supervised. To the question of people who give testimonies about their autistic children being cured, the experts on the panel said those children could have been suffering from something else, not autism. The last session was again devoted to questions and answers and there were plenty of them. Kudos go to caregivers of autistic persons, including their educators and researchers. They are the heroes.
Victoria Ngozi Ikeano writes from Lafia via 08033077519

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