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ADVOCACY AND AWARENESS
IFA is collaborating with other agencies to create Autism Awareness and advocate for Autism courses in Nigeria through Seminars and workshops. IFA will be sponsoring or partnering with others to sponsor workshops/seminars to educate the general public on autism related issues.
From our activities to date, we have learnt lessons and identified clear gaps in the awareness and management of autism in Nigeria. (IFA offers free assessment and diagnosis to families and then have the families referred to service providers). IFA will intensify its work in this area as part of its mandate. Our useful Lessons/Experience includes:
1. There is a lack of suitably trained personnel within organisations offering autism services.
2. Teachers are often unable to recognise the symptoms of autism and usually label a child with autism as disruptive.
3. Parents’ who are concerned about child development issues go to General Practitioners as their first point of contact and that often lead to mis-diagnosis.
4. Parents who are unable to manage the behaviour of their children with autism are often frustrated and that could lead to abuse.
5. Limited or lack of information on autism coupled with fear of stigmatization usually lead to denial.
6. IFA is working with other stakeholder to facilitate the passage of disability law.
Nigeria Specific Awareness and advocacy Material
There is very little Africa specific awareness and advocacy material available in Nigeria. Most of the materials were not reflective of Nigeria’s target audience, both in terms of images and culturally relevant information. A key element of IFA’s awareness and advocacy campaign is to provide materials to the general public that are reflective of the target audience both still, video and cartoon characters. The available awareness and advocacy materials will be adapted to suit the Nigerian context; we are already working with Autism Speaks and the National Autism Society of Nigeria (NASAN) on this, with the hope of later translating some of the literature into some of the main Nigerian languages.
The IFA Autism Series
The IFA Autism Series is a special series that IFA is embarking on to develop its Nigeria specific content for TV, Radio on and offline print. The series will include interviews and discussions with various groups of Nigerian families and stakeholders. It will involve, Fathers series “I am a Father My Child is on the Spectrum” which will take the form of an informal discussion with a group of Nigeria fathers whose children are on the spectrum, their hopes fears and how they cope in the face of mass stigmatization, etc. The same format will be used for the Siblings and Mothers, respectively. This will be both educational and provide an important insight into how Nigerian families cope with autism. In addition, this series will also involve recording and questioning members of the public from different backgrounds from youth to those working in the medical field. This will give us an insight into the level of awareness of autism in Nigeria and help with our sensitization efforts. The information gathered will be uploaded onto some of IFA’s social media platforms to elicit talking points.
Established an Autism Assessment Centre.
IFA has set up and is running the first Public Private Partnership (PPP) Autism Assessment Centre of its kind in Nigeria. It is situated within National Hospital under a PPP arrangement with the Federal Ministry of Health and National Hospital (Ike Foundation for Autism Assessment Centre National Hospital) and is strategically located within the Paediatrics department. This is a free service whereby parents are either referred to or can walk in and book an appointment for assessment of their children suspected to be on the autism spectrum. A number of people have made use of the autism assessment services at the clinic even before any mass awareness campaign has been carried out. This has provided IFA with vital information and an insight into the challenges of parents who are often confused and at a loss as to what to do or whom to believe. Parents are getting relief and we believe the centre is an important step in the early autism identification and intervention.
Capacity building is a package of mutually reinforcing activities which strengthen the knowledge, abilities, skills and behaviour of individuals and improve institutional structures and processes such that organizations can efficiently meet their mission and goals in a sustainable way. It also involves specific interventions that will be designed and delivered by IFA to build and or strengthen the capacity of individuals, groups, organisations and institutions to reposition them and increase their effectiveness. Weak capacity is one of the major challenges confronting individuals, parents, teachers and institutions involved in autism building interventions such as training, technical assistance, mentoring, coaching, supportive supervision, workshops/seminars, exchange programs/study visits etc. The goal of the strategy is strengthened capacity of stakeholders on the management of Autism challenges. Capacity building will be provided in the following target stakeholders
Parent’s awareness and skills training program
Studies show that, with training, parents are able to manage their children on the spectrum much better, stress levels amongst parents are reduced and the children have much better outcome. The training is also expected to facilitate stigma reduction against persons with developmental disorders and result in increased inclusion and participation of children with ASD and intellectual disabilities.
IFA will be using and adapting Autism Speaks/WHO model and plan to pilot the program in Abuja before rolling out to each of the 6 geopolitical zones.
Autism Education Program
The level of Teachers’ skills and awareness about autism is low. Teachers need to be trained on a regular basis on how to identify and intervene and cope with the needs of children with ASD. We have registered with the FCT Universal Basic Education Board, and are working with the Board on plans to raise ability and carry out training to benefit teachers within some schools in the FCT. The training programs will be aimed at teachers, parents Parents-Teachers Associations, school administrators and at a later date, pupils.
Health Care workers training and Sensitization
A study amongst Nigerian health care workers in Nigeria found that 41.1% were of the opinion that autism was a spiritual problem, (Bakare 2009a). The belief that neurological disorders such as autism are spiritual attacks is one of the major challenges in Nigeria which makes an urgent case for training and educating health care workers, from Paediatric nurses, general practitioners and psychiatric workers. This will avoid parents’ concerns being overlooked, and ensure early intervention. The training will commence as a train the trainer program piloted within Abuja FCT.
EARLY INTERVENTION PROGRAM
Autism intervention is a costly process with a range of specialized services and professionals involved in the care and education of the child. The cost of care where it is available is out of the reach of low income families. Thus, support to this group of persons who have autism are not likely to be sustained without community involvement and commitment. Ike foundation for autism wishes to address this by setting up PPP Autism Community Centres in each of the six geopolitical zones, including FCT. These Centers will be multi-purpose one-stop facilities and will cater to all persons with autism irrespective of their age, income levels or socio-economic status. The IFACCs will provide assessment, early intervention services, educational and vocational training, recreational facilities and address the medical and physical needs of this group. In fact, the ultimate goal is to have dedicated community centres that will serve as multi-purpose facilities specially designed to meet the needs of persons and families living with Autism in Nigeria. The implementation of this phase will first commence in FCT and one other geopolitical zone as a pilot. IFA would like to learn lessons from the pilot before mainstreaming it to all the geopolitical zones
Achievements to Date
To date, Ike Foundation for autism has achieved the following:
• Advocacy and awareness campaign
• Established an Autism Assessment Centre
• Opened IFA Resource Centre
• The IFA Autism Series
Collaborated on Data and Information Generation and Dissemination
To date no country or community based epidemiological studies of ASD in Nigeria have been carried out. To address this and plan for future needs of persons with autism and their families, IFA spear-headed an epidemiological study and is collaborating with Autism Speaks one of the biggest International autism organisations in the world, the World Bank and the Nigerian National Bureau of Statistics on developing a range of specially designed autism screening questions which will be part of a nationwide household survey. This will provide critically needed information of childhood development issues and indications as to the possible prevalence rate of Autism in Nigeria. This survey will also assist with policymaking and advocacy in the area of autism.
Target audience both still, video and cartoon characters. The available awareness materials will be adapted to suit the Nigerian context; we are already working with Autism Speaks and the National Autism Society of Nigeria (NASAN) on this, with the hope of later translating some of the literature into some of the main Nigerian languages.