Give Autistic children a chance

Do employers or governments pay for the medical bills associated with treating a child on the autism spectrum? How many people can actually afford the costly Individualized Educational Plan (IEP) – driven education required for children on the autism spectrum? How about the special diets and medication required? Who pays for the time that parents have to spend to care for their children and how about the structures available at our schools to integrate and incorporate the needs of these children? Who protects autistic children from bullying and abuse from their colleagues and sometimes even teachers? Who ensures that children on the autism spectrum can even learn and practice their religious beliefs (for example, receiving sacraments in church or even attending church programmes without the other worshippers complaining about a tantrum that they threw? Finally, who cares that these children have a right to a job, to earn a livelihood and to live independently under the law?

I guess that by now readers are wondering – what I am going on and on about, and why should all of this be of such grave concern to the entire world? Well, the statistics for the prevalence of autism has been growing steadily. From about 1 in 1000 births at the turn of the last century (1999), it is now a whopping 1 in 180 births and in some countries as high as 1 in 68 births. Save for the dearth of accurate statistics in Nigeria, we would have been able to have estimates for our country. But since autism has no geographic boundaries or preferences, we can safely assume a conservative 1 in 180 for Nigeria, and if the number of people who come into our centre on a daily basis is anything to go by, then this figure is probably realistic.

With this high and sharply increasing prevalence rate, it is critical that we pay special attention to this potentially large number of people in our society. While the medical researchers and scientists are still working hard to find its cause and possibly its solution, society needs to pause and answer the questions that I have posed and even much more regarding autism. For many who hear of autism for the first time like I did 8 years ago, we may be quick to say ‘not my portion’, but with the current statistics even it won’t be your portion, it may be afflicting someone – family, friend, colleague or neighbour close to you, and we must be our brothers’ keepers if we are to make the world a better place.

So, we need serious action to protect and support children, adults and families coping with autism, and my questions proffer a few areas where this legislation should focus if we are to give that significant part of our population a shot at having fulfilled lives. For example, we must pass legislation and support it with executive action that guarantees high quality special needs education for all children on the autism spectrum. This may sound like a tall order for a country that can barely provide any form of education for its vast “neuro-typical” population, talk-less of what seems like a minority of autistic children. The truth about funding for education and development is that if you juxtapose it with the billions of dollars that are carted away each year by corrupt public officials, it pales in comparison. So, we can have better education and high quality special education if we legislate and promote zero tolerance for corruption and commit the funds that we have even budgeted into education. High quality means that at a minimum, the children must have IEPs and system for continuous monitoring and evaluation of these IEPs and a teacher to pupil ratio of nothing less than 1:3 with at least 8 hours of intense learning and other forms of supporting interventions in a five-day week. This should also be supported by subsidies to private educational institutions that cater for children and whose programmes meet certain bench mark standards. Parents with autistic children who are in private educational institutions should also receive some subsidy from the government to allow them meet the other capital intensive needs of taking care of a child with autism.

Health plans provided under NHIS and other private health plans should cover the medical tests and treatments that our children need, and there should also be legislation that makes the bullying or unfair treatment of autistic children and adults a crime, alongside other forms of bullying and discrimination. To support this, we also need a lot of education and enlightenment provided in schools, hospitals and social/work groups about autism, so that people can act responsibly and treat autistic people and their families fairly and with respect. We also need laws that provide a social security net for autistic adults who are unable to find jobs – offering them a stipend that covers their living expenses, and continuous treatment as may be necessary.

My long shopping list may seem to a few like I am asking too much, but think about our constitutional rights to life and good living, think about the disadvantage that people on the autism spectrum already have. Think about the growing incidence of autism. Think about the colossal drain that corruption and wasteful government spending has caused our society, and you will understand.

Oluwakemi Barrow