By Peter Usman://
Autism is a lifelong, non progressive neurological disorder, typically appearing before the age of 3 years. Experts say that it is neither a psychiatric illness nor a spiritual condition as erroneously speculated by many.
However, this lack of proper knowledge about autism in the FCT is about to change following a surprise visit by the FCT Minister, Malam Muhammad Musa Bello to Brain Bloom Centre, Apo, Abuja, a centre dedicated to the care of children with special needs and at the forefront of creating awareness for autism.
A request for a courtesy call to the Minister by the Center’s founder and Managing Director, Mrs. Rahanatu Yusuf as part of activities to mark Autism Awareness Month held from the 1st to 30th of April every year led to the Minister to instead visit the school with a view to rendering necessary support.
Speaking after a tour of facilities at the Centre, the Minister corroborated Mrs. Yusuf on the imperative for the creation of awareness about the disorder, even as he pledged continued support of the FCT Administration to improving the well-being of persons with autism and other neurological disorders to enable them live normal lives.
“We feel highly delighted to have come here and I share with what you are doing because autism is a reality actually. It’s probably just recently that we know autism as a name. Sometimes, you get to know it rather early and sometimes, you don’t know about it till it’s very late. I encourage you not to lose hope. Let us just keep on pushing.
“I will continue to give you publicity, and from time to time, I encourage you to do some activities. You don’t need to make it only an annual event during the autism month. If there is any need for support, you can contact my office and we will see what we can do”, he said.
Highlighting the necessity for awareness on the disorder, Malam Bello said: “I am very happy that you created a forum where parents of the autistic students can come and share ideas because we realize in life that anything that happens has happened before. So, sometimes, if you share ideas, you will be able to achieve the aim of finding solutions to any challenge.
“I assure you that the FCT Administration will give you all the needed support. You can be rest assured that I am going to be a very passionate advocate of what you do.”
On the need for an inclusive environment, the Minister revealed that the FCT Administration was working on making public buildings to conform with the Disability Act recently signed by President Muhammadu Buhari, so as to cater for persons with disabilities and other special needs.
According to him, this, coupled with the planned installation of lifts at the rail stations would provide easy access and movement to persons with disabilities in these facilities.
Mrs. Yusuf, in a welcome remark earlier, appealed for greater understanding, patience and acceptability of autistic persons to build a much more inclusive world that protects the rights of all children, particularly those with neuro-diversity.
Calling on governments at all levels and citizens not to forget the vulnerable populations and implement the Disability Act, and establish proper diagnostic centres, Yusuf said: “We want to make autism awareness more center stage and topic of conversation which is why we are bringing this to the attention of the Honourable Minister who has the capacity to make impactful policies to achieve this herculean feat.”
Trained as a Chemical Engineer, Yusuf found practice and passion in special education while researching and building her capacity to support her eighteen months old son, Usman, who had a slow start. Now Usman is 14, in a mainstream school and breaking barriers, Yusuf decided it was time to help others take care of their children with similar challenges.
She pointed out that though symptoms of autism may be similar to other neurological disorders, children with autism are different. “They all have different clusters because autism hardly exists on its own. There is usually a comorbidity along with it.
“Some of them have attention hyperactivity disorder -very short attention span. They cannot focus on one activity for more than five minutes. Some have anxiety issues. They get scared when they want to try something new.
“Some even have dietary issues and cannot deal with certain kinds of food. Some of them have epilepsy, some of them have seizures because they are all related to the brain”.
Yusuf therefore called on well-meaning Nigerians and corporate bodies to come to the aid of the children. According to her, the Centre is small and needs to be expanded, new ones established across the Territory in areas easily accessible to the needy.
Yusuf’s partner and childhood friend, Mrs. Olayinka Afolayan, a Computer Scientist by profession and special needs children advocate, stressed the need for acceptance by the society. Afolayan, though not having a child with special needs regretted that society tends to stigmatize anything it does not understand, calling for more awareness to reduce stigma and increase the possibility of early detection and care.
Narrating her experience where she was told to seek help to get more male children when she had her second female child, Afolayan lamented that such stereotype causes more harm than good in relations to Special Needs Children as early detection was key to resolving most issues surrounding caring for the children.
Some parents of autistic children narrated their ordeals, ranging from lack of diagnostic centres for neurological disorders, financial strain to physical and mental stress.
One of such parents, Mrs. Jamila Ruma Bawa, lamented that the challenge started from when they didn’t even know what the problem was with their child, then to finding a suitable place that understands and cares. She concluded: “Autism, is tasking emotionally, , physically, and particularly financially.
“You have to pay school fees, as some of the kids go to mainstream school. They come here for therapy, so you pay for therapy, pay for mainstream education, pay for some special therapies pay for special diets, pay for supplements, pay for doctors’ appointments and all these are being borne by parents”.
For Usman Ahmed Modibbo, another parent, it was equally challenging for his family as they faced facts they didn’t want to accept when their son was hyperactive and couldn’t speak a word at three. “But we have seen progress and the best decision we’ve ever made is coming to this Centre”, he said.
On her part, Mrs. Fatima Zarau appealed for inclusion of autism treatment in the national health insurance scheme (NHIS): “We as parents of special needs children have a lot of demands. Government should meet us halfway because most of the interventions our children needs are very expensive”. She also called for inclusion of special needs treatment on the NHIS.
One of the Centre’s teachers, a verbal behaviour therapist, Mr. Manji Danjuma, explained that verbal behaviour therapy was the most suitable method adopted in teaching the children since conventional learning methods were unsuitable for them.
Danjuma stressed that the therapy was an approach that applied behaviour analysis and theories of behaviorists in teaching children with autism in communication and language. Simply, verbal behaviour therapy is a Montessori teaching method involving use of images and sounds that represent those images.
For Danjuma, he finds fulfilment in the progress made by the children as they move from not being able, to being able to express themselves better.