The first time I heard the word Autism in 2011, I was just in SS1 and I borrowed a novel from Jemi, my then bestie. It was Karen Kingsbury’s Unlocked, and though I didn’t get to the end of Holden’s journey, I took two things away. First, autism was a disorder with no known one cause and secondly, music was a key that unlocked Holden’s inner world locked by autism.
I was dilly dallying on Facebook some weeks ago when I saw the event by GT Bank. I clicked the interested and after really giving it some thought, I went back to click going and it was free. So, all I had to do was to get myself to the venue! On arriving Muson centre, the orange and white backgrounds were screaming I was in the right place. Fixing my orange ribbon broche, getting the writing materials and brochure all provided by GT Bank was all needed to settle in.
The conference, which has been running for eight years now, had this year’s theme as the Role of Family and Community in raising a child living with Autism. The orange ribbon initiative set up in 2009 to support people with developmental abilities and special needs especially Autism Spectrum Disorders (ASD), has recorded massive attendance of over 5,574 attendees in the past. The Shell Hall being filled up before 11am and the many persons standing in Agip hall for want of space testify to this number.
For a caregiver, a parent, a teacher or health personnel, the conference has in one way or another helped their careers judging by the professionals that were pulled together. For an ordinary inquizi-tive person like me (see what I did there), I have gotten a firsthand knowledge of this developmental disorder. At least I know that boys are 4 times more likely to have autism than girls and this should help guard against myths like “Boys talk late”, “they will outgrow it”, “he is possessed” and so on. I also now know that Autism is a spectrum with three different levels and most importantly, Children living with Autism can grow up to live a life as normal as getting a job and even finding love, with the son of one of the facilitators who will be graduating with a Bachelors degree in mathematics next year an example.
The Q&A sessions in between revealed that parents came from Rivers, Ibadan and Kano just to attend the conference. It is then only fair that the event be free since they would have spent on transport. I also thought it excellent to have chosen the centre of excellence as the location for the event.
While speaking to a psychologist friend who I met at the event, he said that Children and Adults living with Autism are in a world of their own, but based on Dr. Maymunah’s presentation, these children are not to be blamed. In her own words, “doing so is akin to blaming a cancer patient for their condition”. Here in this part of the world, we say that it takes a village to raise a child. As true as this may be, we cannot deny that this same village stigmatises children who don’t fit into the “raising” circle and this defeats the aim of collaboration. For the parents, Camile Proctor of The Color of Autism foundation urged parents to be their children’s best advocate. She noted how easy it is for the society to label them irresponsible but until they realise that advocacy like charity begins at home, the journey won’t become easier for them.
Still on sensitizing the village made up of the family and community, labels are to be avoided like the plague. The children are best addressed as Children living with Autism not Autistic children. The former allows one to be open enough to see what they are first before what they suffer while the later makes no distinction between what they suffer and what they are, a difficult and demeaning manner of approach. Assumptions are also a danger to collaboration in raising Children living with Autism, because with the many stories I heard, I can easily diagnose a child with Autism but self diagnosis is wrong! People like me are only allowed to speculate, but a medical report from a professional is key in making any decisions. On the part of either therapists or teachers, anybody at all on the team, don’t assume, ask questions to ensure the health of the child is not jeopardised in any way.
The children are best addressed as Children living with Autism not Autistic children. The former allows one to be open enough to see what they are first before what they suffer while the later makes no distinction between what they suffer and what they are, a difficult and demeaning manner of approach.
Another milestone this awareness conference will achieve is educating people on inclusive education. For those teachers who resort to extreme capital measures, they should really take a chill pill. Some seizures discussed which are symptoms of Autisms are not visible; the child might be bodily present but absent minded. The panellists also deliberated on other reasons why a child might not be learning as he should such as poor eating habits, excess intake of processed foods, poor eye sight, uncomfortable learning environment, et cetera. It is however, dangerous to conclude without a medical report from a trusted professional.
More To Read on Autism: Why I’m All For Inclusive Education
For siblings and family members of Children living with Autism, patience is required to help loved ones through this condition. According to Dr. Adegboyega a Speech Therapist based in New York, some parents are desperate to have their children speak while forgetting other means of communication. It boils down to finding their strengths. It could be music, like the nine-year old who played a piano at the event, or painting or any other way different from the conventional.
The founder and director of Patrick Speech and Languages centre, Mrs Akande, mentioned that the Governor Ambode administration supports special education through scholarships and such other awards. This made me think of how much difference this could make for the children living with Autism all over the country if other state governors helped in this regard. Evaluating the fact that almost all of the resource persons spoke through their noses, having some of them from the College of Medicine University of Lagos, The Neuropsychiatric centre Aro Abeokuta, and Lagos State University Teaching Hospital (LUTH), one can rightly say that all hope is not lost for government-owned institutions. We only have to keep striving to bridge the gap and maybe one day the Grand Commander of the Federal Republic could have his cold treated at LUTH.
Other banks could also take a cue from GT Bank. They could channel their CSR programmes to other groups in the society who need platforms to gain support financially, emotionally and otherwise. A particular mama Ebun who came all the way from Ibadan to seek solution for eighteen year Ebun represents a good percentage of the poor masses who have only enough to eat and none to spare on therapy and the rest. It was a case of the haves and the have-nots; while the have-nots cried out for support, the haves asked about cannabis oils and stem cells as healing options. From the answers from experts in different fields, it was made known that the two means have not been reported to have high rates of success and should be avoided till proven otherwise. Although getting help online was not completely discouraged, the need to carefully follow through with the help of a professional was highly advised.
I didn’t get to hand in my evaluation form so I’ll just shout from here and hope they will hear. The venue, food, speakers, and co-ordination were all on fleek, save the little hitches for those of us who watched the streaming from Agip hall and those who were standing too. The best part was that I watched everything going on the second day via facebook live streaming. In the end my curiosity was satisfied, learnt a whole lot, enough for me to be a voice.
So, wouldn’t you rather be a voice?
Featured image: NAN
I think, therefore I write