Building capacity around the autistic child
As a parent of a child on the autism spectrum, one of the challenges that clearly stands out is getting people around the home and community to firstly understand, and then support families with children on the autism spectrum and the children themselves.
The challenge – with very low levels of awareness, it is no surprise that family members, friends, bosses, colleagues and even your domestic workers cannot give the families and children the support they need.
Sometimes you will get friends and family members suggest that the amount of money and attention that you give to your autistic child is not worth it, especially like another parent told me “in these days of very expensive dollars”. When family members and the people around the autistic child and family are not knowledgeable enough about autism, the child and the family will struggle to make the progress they need.
For example, at your Church or other place of worship, you will get plenty of stares and rude remarks including “can’t these people discipline their child” or ‘this child does not have home training”.
Even your housemaids will come in and after a few weeks conclude that “these people have one mad/possessed child like this…” Your parents who love you so much may try to dissuade you from the continuous costly investment in your child’s special education and lifestyle changes (diets and medicines); siblings may begin to gossip about how “it must have come from your spouse’s side of the family”, while some “friends” may even stop bringing their kids to your house in case they “catch something” from your autistic child.
With more capacity in these people that are part of the society and community in which an autistic child lives about autism, the children and their families will be better integrated into the society, and be able to enjoy as much as possible a “normal life”.
While all of the above may not have happened to my family and I, some of it has, and we have experienced even much worse from people on account of their ignorance. A recent survey done by the Thoughtful House Autism Foundation based in Abuja targeted at ten schools in Abuja showed very low levels of autism awareness and knowledge among pupils and students across both privately-owned and public schools.
The research further showed that there is a strong relationship between this lack of awareness/knowledge and the proclivity to stigmatize, ostracize, bully or even abuse/exploit these children. It is therefore critical that as we roll out the drums to mark World Autism Day (02 April) and the various activities and initiatives throughout the month of April this year, we should be paying attention to building capacity around the autistic child and dealing with the “ecology” and “ecosystem” and ensuring it is not only autism-aware, but autism-friendly and enabling for the children and their families.
Where the ecosystem around the child and family is not accommodating, parents will give up and sometimes abandon their children and all the “wahala”; marriages will be dissolved on account of autism; siblings will feel “stressed”, jobs, careers and businesses will be lost and fail; schools will reap parents off by just promoting these children from one class to another while collecting school fees and teaching them nothing; and these innocent children will become the victims of bullying, abuse and exploitation.
Building capacity can take many forms, and one simple example will be educational resources targeted at these various groups of stakeholders in the ecosystem. So, imagine if organizations will get employees to listen in on presentations and participate in short seminars about autism, so that bosses and colleagues can be more accommodating of their colleagues who have autistic children, or who may be autistic themselves; or if worshippers and leaders in the faith community could give 5-10 minutes, especially around this time (April) for short talks on autism, so that they could be less hostile and more accommodating of that ever-screaming child and his “seemingly undisciplined/irresponsible parents”. Imagine if families with children on the spectrum had a book or video to give to housemaids, drivers, visitors, family and friends that could explain autism to them in simple enough language so that they could become more supportive.
Imagine if siblings who live with the autistic child, and have to bear the brunt of some of the sky-high emotions that come with the tantrums and “pampering” could read simple books or even have simple aids and tools around the house with which to engage/play with their autistic sibling. Imagine if more parents with children on the spectrum, had access to learning and therapeutic materials that were more affordable to help their children.
Imagine if we had more special education teachers, doctors, speech therapists, occupational therapists, nutritionists and others who are not just concerned about making money, but have developed core competencies to support the children on the spectrum and their families, and do so with passion and commitment.
I will really like all those concerned with autism to start to think along these lines. To recognize the perils of the abysmally low levels of awareness and knowledge, and to go beyond what we have been doing in the advocacy community: convening walks, creating awareness and writing articles (like I am doing now) to start also focus very deliberately and systematically on the ecosystem around the children and their families and building the capacity of those stakeholders within this ecosystem.
Omagbitse Barrow is Co-Author of “110 Autism Facts Everyone Should Know”, and Producer of “Chubu and Chibi Autism Adventures (an animated video series).