In many parts of the world, including some underdeveloped and developing societies, there seems to be increasing concern over the rise in cases of autism spectrum disorders (ASD). In some countries, these concerns have resulted in efforts to enact laws mandating early diagnosis and intervention; the provision of free, appropriate services and education for children with autism; acceptance and inclusion of such children in mainstream or regular schools; and training of special education and regular teachers on best practices in meeting the goals of each child’s individualised education plan.

Beginning in the United States in the early 1940s and in South Africa in the mid-1960s, serious efforts have been made in many parts of the world to recognise autism as a disability in its own class and to address its many challenges. In South Africa, this effort began when Dr. Vera Buhrmam became aware of the extent of the problem of autism in Cape Town. In 1970, the first school for autistic learners opened in the city, and there are now about five such schools in South Africa.

However, the situation in Nigeria seems to hark back to pre-1943 America, when children with autism were thought to be schizophrenic or mentally retarded, and when maternal deprivation and spiritual causation held sway as explanations for its cause. In many parts of Nigeria today, particularly in rural areas, people with autism are thought to be possessed or evil.

The level of awareness about autism in Nigeria is pathetically low. There is some awareness amongst those in the medical community, but the extent of their knowledge is often limited. Most only know the symptoms and manifestations of “infantile autism”. The majority do not know that there are different forms of autism spectrum disorders (such as regressive autism); some don’t believe the condition is treatable; and nearly 70 percent have no clue as to where to refer cases and/or what to do even when sure about a diagnosis. We still have medical doctors who say that autism is rare, foreign and ‘Oyibo wahala’ (White man’s problem). Many children in Nigeria with autism are either not diagnosed or misdiagnosed. They end up being hidden at home or are ‘lucky’ to be categorized with the deaf and mentally ill children. In rural areas, where there are no psychiatric hospitals, the majority end up on the streets, labeled ‘insane’.

There is a serious and disheartening lack of understanding about autism in Nigeria. I have met many special educators, psychologists and even medical doctors who seem to be hearing the word ‘autism’ for the first (or poorly-remembered second) time. Parents are often the most confused. Different doctors say different things, and by the time parents visit ten professionals, they come out with ten conflicting professional explanations of the same condition. In most countries, a multidisciplinary team assesses, diagnoses and develops an individualised educational plan for each child with autism; however, what happens in Nigeria is very far from that. Here, the children are hidden at home, especially if the special schools (centres for the deaf, blind or mentally ill) reject them.

Nigeria’s first experience with individualised, one-on-one treatment for autism dates back to 2001, when Dr. Helen Nwanze began working with an American expatriate boy. At the same time, the boy’s parents brought in Ms. Stephanie, a behavioural therapist they met in South Africa, to work with him. Soon after, they invited Linda Herbert, a Cape Town-based behavioural consultant who was also a teacher at the prestigious Vera School for autistic learners in Cape Town. Herbert and a colleague of hers offered a diverse intervention technique called Special Needs Adapted Programme (SNAP), which later became the Autistic Spectrum Adapted Programme (ASAP).

As the boy made fantastic progress with the programme, more and more children were referred to Dr. Nwanze, who eventually started an organisation called Acceleration Therapy. The organisation began to recruit and train therapists on the ASAP. William Ekanem of Autism Associates was among the first group of therapists to be trained on the programme, and the number of children in Nigeria partaking in the programme grew from one to seven in 2002.

As more therapists were being recruited and trained, I joined the team after completing a Master’s degree in Psychology at the University of Lagos. I had a vibrant enthusiasm for autism advocacy and awareness, and we began organising small seminars and holding meetings with parents.

In 2005 – along with Yemi Oduwole, a fellow psychologist – I was sent for training at the Vera School in Cape Town. Upon my return, having seen the quality of facilities and programmes available in South Africa for persons with autism, I felt strongly about increasing awareness of autism in Nigeria among parents, government and professionals. My then employer, Acceleration Therapy, organised the first of many national conferences and workshops on autism with the valuable support of the likes of Linda Herbert, and overseas counterparts, including the Blue Ridge Autism Centre in Virginia, USA, which have helped to train professionals, and bring the issue into the public eye. Other notable organisations that have educated the public about autism include Dr. Akindayomi’s Children Developmental Centre in Lagos and the Zammar Institute in Abuja.

In January 2007, I led a group of parents and professionals to form Autism Associates. Our primary goal is to campaign for early detection, appropriate diagnoses and intervention for ASD. Autism Associates is also assisting with the formation of CADD (Centre for Autism and Developmental Disabilities) which will focus on advocacy, research and training. There is a need for specialised services such as speech and occupational therapies, and there is also a great need to train the medical community and educate them on early detection and diagnosis of autism. Our first major public event was the April Autism Awareness month project, tagged “Learn the signs – act early.” This singular event attracted the attention of the federal government and received extensive media coverage.

The legal framework necessary to support individuals with autism is another deficient area. The trend in most parts of the world is that ‘no child should be left behind’, that every disabled child matters, and that there should be free basic education for all. However, here there is no recognition of autism as a disability, and there are next to no services available to meet the needs of those with the condition.

Currently, the government has not accepted autism as a disability needing special attention, and it has not recognized the rising cases of ASD. Even the federal ministry of education does not categorise autism as a distinct disability, despite the fact that the condition is currently reputed to be the third most common childhood disorder and the fastest growing developmental disability. Many of the so-called ‘mad’ people on Nigerian streets are autism sufferers who were neither diagnosed nor treated. Yet they could have been treated. They could have been our Temple Grandin, Tony DeBlois or Ping Lian (of Malaysia)

The worst hit are the millions of families in rural areas where there are hardly any schools for children in general, much less facilities for the challenged ones. Exorcism is the common treatment, and mothers are blamed for their children’s autism. There is much stigma and discrimination against disabled persons.

Because there is no welfare programme in Nigeria to offer government funding for educational and specialised services needed by these children, the entire financial burden is placed on parents. The few affluent ones prefer to send their children abroad, and if they must reside in Nigeria, they hire an expert from South Africa, the USA or the UK to work with their children one-to-one. Often the cost of bringing in an expert would otherwise be more than sufficient to train 30 local therapists.

The denial of the disability, the selfishness, and status assertion are some of the major challenges hindering the formation of a viable parent support group. Currently, there is no national association for people, families and professionals involved with autism. Parents can be very powerful allies in improving service conditions for special needs children. Some of the world’s most influential autism associations, such as the Autism Society of America, couldn’t have succeeded were it not for the involvement of parents. In Nigeria, however, efforts at forming a viable parent group and/or a group for parents allied with professionals are constantly being shot down by greed and class ego.

Nevertheless, Autism Associates, CADD and other like-minded groups are serious about making a difference. We are determined to influence government policies, attract support and provide leadership for the right direction forward.

We believe that people with autism have a right to accessible and appropriate education. We should restore hope and help for the estimated 380,000+ undiagnosed children (in 2007, we estimated 190,000+ undiagnosed children) by empowering our own parents and professionals with up to date information and effective skills. The majority of us are highly motivated and enthusiastic but lack sufficient skills needed to help this growing population. We appreciate the kindness of various organizations who through their websites offer free access to information. We further appreciate the emerging “Autism around the Globe” project by the Nancy Lurie Marks (NLM) Family Foundation which promises to offer a global, interactive, public awareness website. In my opinion, countries such as Nigeria and other poor African nations will greatly benefit from such free access. The challenge, however, is that still only a few privileged persons have access to the internet. In the rural areas where there is hardly access to power supply, the dream of accessing autism information via the internet will probably take a long time to come true. There is therefore a need to bring these resources nearer to these people. Information can lead to early detection and possibly early intervention, thereby saving a lot of damages.

At the April 2007, 2008 and 2009 Autism Awareness Month press conferences, Autism Associates implored the Nigerian government, corporate organizations and particularly the press to help increase awareness of autism by sharing the following important messages:

•  ASDs are no longer rare. Autism is in Nigeria and the cases are increasing

•  ASDs are neither confined to the upper class, nor are they only ‘Oyibo wahala’.

• Many of the children with or at risk for ASDs are not being identified early

• There are limited services available for this growing population. Doctors do not know who to refer them to; regular schools reject the children; the adults end up on the streets as “mad” persons; parents are left completely on their own.

• Services are in very critical shortage and our educational institutions are as yet, unable to bridge the gap in training. Even our universities provide little or no autism-specific programmes. As a result, would-be professionals must sponsor themselves abroad for training. The implication of this is that their fees are often above the reach of the average parents. Note that in Nigeria presently, parents do not get any subsidy or funding from the government for the specialized health and educational services of their children. They bear the cost 100%!

• It is high time the government recognized autism as a disability and ended the discrimination against families and children with ‘unseen’ disabilities.

• People with ASD are not burdens or economic liabilities. They, like everyone else, are human beings with potentials and capabilities for productive lives. Whether these potentials are actualized or not is largely a function of what support systems are available.

Since there is, as yet, no practical response to this three-year-old call, we are using this medium to repeat the call and to draw the attention of all stakeholders to help give hope back to the affected children and families with autism in Nigeria.

Okey-Martins Nwokolo
Psychologist
2010

This is a modified version of an article originally published with the title, “The Taboo of Autism” in 2007 in Metro Éireann.

 

---

The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.