What future holds for autistic children in Tanzania

Dar es Salaam. A cloud of uncertainty hovers over the future of Tanzanian children living with autism—a condition that affects their development and social skills.

For many years, researchers on child health have established that autism is increasingly becoming common in Tanzania.

This is happening at a time when there is a critical shortage of basic clinical services, quality care and inadequate investment in teachers for the children with special needs.

Prof Karim Manji, a specialist in pediatrics and child health, believes that there is a pressing need to draw attention to the policy-makers on the need toincrease resources in screening and caring for the affected children.

Prof Manji, a neonatologist from Muhimbili University of Health and Allied Sciences (Muhas), has been researching on the autistic children for years now.

His study, which was published in the Tanzania Medical Journal (TMJ), has exposed gaps in the health system, which need to be fixed in order to ensure a better life for autistic children.

Titled ‘Identifying gaps in knowledge, prevalence and care of children with autism spectrum disorder in Tanzania’, the study found out that there is limited information available on autism in the country.

“There have been scattered information and no concerted efforts for these children. The education and care in the public facility are scanty and the private facilities have a huge burden of costs, and are mainly donor dependent. There is also a lack of trained human resources to cater for these children,’’ says the study. According to data cited by the study — sourced from the Ministry of Education, Science, Technology and Vocational Training —there are about eight registered public schools only.

Further, the study says, there are eight private centres, which are yet to be registered by the ministry.

“The prevalence in these centres was 437 children, which may be a gross underestimate, since these are predominantly in Dar esSalaam and north-eastern regions of Tanzania,’’ it further reveals.

When Prof Manji presented a paper on the autistic children during a professorial lecture at the Muhas recently, a senior mental health specialist, Prof Gad Kilonzo, noted that certain mental health issues remain unattended to in Tanzania because of shortage of expertise, and yet little is done to mitigate the problem.

“Raising the profile of this matter (autism) is important. If more investment is put in training of more psychologists and psychiatrists, it would help serve the purpose. When I began working as a psychiatrist at Muhimbili many years ago, there were just a few of them and as I speak they are still few,’’ he added.

Govt admits shortage

Recently, the government admitted in Parliament of a critical shortage of specialised teachers for autistic children, saying that there are1,416 children with the problem, but the country has 157 teachers only in 18 primary schools.

The deputy minister for State in the President’s Office (Local Government and Regional Administration), Mr Joseph Kakunda, made a commitment that his office would ensure the distribution of such teachers to schools with special needs—including those with autism—is done by this December.

Prof Manji’s revelation

Prof Manji gave his narrative of how he has been attached to the children with autism, what inspired him to study their condition and what the future holds for autism in Tanzania.

Through his paper, which he presented before researchers and government officials, titled ‘Gaps in Knowledge, Prevalence and Care of Children with Autism in Tanzania’, it was revealed that children with autism and other disabling conditions are discriminated and considered useless.

“These groups of children are deprived of any treatment or therapy and end up in institutions enduring terrible suffering for the rest of their lives,” he noted.

“Though it is very difficult to find specific data on the number of children affected by autism in Africa, the number of diagnoses is risingand it is now higher than it has ever been before.

“Third world nations in Africa or in Asia don’t have that kind of powerto go to the community and collect statistics for us.It is still poorly diagnosed and poorly managed. Autism has social, societal, educational, psychological and economic impact on the family.”

Prof Manji’s findings tally with details from various reports, which show that in Tanzania, like many other African countries, there is scarce data, and most of the data seems to be sourced from South Africa or Nigeria.

Yet, as Prof Manji says, there is still very little information on risk factors, knowledge and interventions. There are no translated and validated tools, and lack of expertise.

He describes a typical situation where a male child with autism is diagnosed at a late stage, when he is unable to adjust in school and is non-verbal.

Such a child, who is likely to have seizures, he says, is labelled as stubborn.

Over the years, he has realised that the autistic children receive minimal support from their fathers.

Can private sector help?

Prof Manji believes that the private sector can help, stressing that there are organisations, which have been carrying out interventions and providing care for the autistic children in the country.

Four years ago, researchers at the Brown University and the University of Georgia (UGA) said they had developed a culturally compatible diagnostic approach that they applied in Tanzania and found it to be effective for diagnosing.

The techniqueis a collection of instruments.

The lead researcher under the project, Mr Ashley Johnson Harrison, as per information from the Brown University, saidthe diagnosis was evaluated from 41 Tanzanian children.

It was reported that the children came to clinical facilities inKilimanjaro and Dares Salaam with features suggestive of autism.

Mr Harrison, although he could not speak Swahili, could now work with local interpreters and managed to identify the children with autism from those without the condition.

For many years, parents of the autistic children have been forced to seek care from abroad.

Organisations in Tanzania

An organisation known as Autism Connects, which works with other 10 to 15 centres in northern Tanzania, has contributed significantly in empowering and training teachers on how to handle autistic learners.

A report that was compiled by Prof Manji shows that the organisation conducts workshops and onsite training.

Four workshops are conducted annually, there is a sponsored outreach programme for rural areas and have developed simple tools for primary caretakers and teachers as well as for publicto raise awareness of the condition.

Not fully tracked

A team of researchers working with Prof Manji conducted interviews at the Muhimbili National Hospital (MNH), with psychologists and psychiatrists, only to find out that there was little follow-up on autistic children.

“They saw a lot of children with features suggestive of autism. However, they weren’t fully engaged in their follow-up ortherapy at any appreciable level,’’ says Prof Manji.

“We are working on a database that will help in monitoring these children closely, but severe shortage of human resources in the department including speech and behavioral therapists makes it even more difficult.’’

What compounds the problem, he says, is the huge burden on the existing staff to handle other psychiatry patients, those with substance abuse and even those with organic disorders such as epilepsy.

“A research to determine the phenotype as well as genetic mapping in proposed by a PhD student revealed that there are several centres for special needs and these children are clustered together with those of mentally challenged and cerebral palsy.”

Is Health Ministry getting concerned?

When Prof Manji and the team were conducting the study, they found that data from the Ministry of Health indicated that childhood mental health is not yet given much importance and seeking care for children with mental disabilities is still not much sought.

Autism, he says, is still placed in the category of “others.’ As data was being collected, autism featured as one of the conditions, thus indicating that we may be actually missing many “other” children in the community and/or mislabeling several others.

Prof Manji revealed that one senior official was quoted as saying, “Autism is poorly recognised, and clumped together with other children who have Cerebral Palsy, Mentally Challenged or other disorders.”

Interviews with four renowned pediatricians in Dar es Salaam, two each from private and public centres, echoed the same feelings that this condition is probably increasing, but is still unrecognized and facilities or centers to cater for them are lacking.

Details on care centres

Data from the education ministry, during the study, revealed only 15-20 privately owned faith-based organisations and unregistered centers which cater for these children.

Some of the good schools and resource centers have relatively and understandably high fees, whereby an average Tanzanian family may not be able to afford.

Some of these schools, details show, have visiting scholars and teachers and volunteers who come for short periods of time to train and volunteer during the summer holidays in the care of these children.

This highly appreciated activity is however not sustained due to various reasons, and due to lack of a sustainable long-term program in the country.

According to findings, one of the government-run centre at Patandi, Arumeru District, Arusha, has a teachers training centre for special needs education at certificate level and diploma level.

Yet, further details show there is also a degree course offered at St Sebastian College in Lushoto District, Tanga Region.

What govt is doing

In the efforts to improve diagnosis and raise awareness the Ministry of Education, Science, Technology) and Vocational Training is planning to establish education support resource and assessment centres (ESRAC) in all districts in the country, which will start as a national base from the Braill Press at Uhuru Primary School in Dar es Salaam, subject to availability of funds.

However, one challenge which stakeholders say should be addressed urgently, is the need to create more qualified persons in special needs education and that the availability of experts to provide a fairly accurate diagnosis and its ramifications.

Gaps in awareness

Against a backdrop of the lack of facilities, there have been good attempts by parents to come together and form an association of parents with children with autism, and this needs support and encouragement.

This also happens at a time of global imbalances. In 2013, an expert, Tomilson and Swartz found that out of a total of 764 journals about infant health surveyed 78 per cent were from North America and 16 percent from Europe, only 4 per cent were found to come from the rest of the world.

However 90 per cent of the world’s children are born in countries which are termed “low income” or developing. “It is clear that there is an imbalance of knowledge about infancy worldwide: Most infants are born in poor countries, and most of what we know about infant mental health comes from wealthier countries,’’ said Prof Manji, as he cited these reports.

What more can be done?

One, says Manji, is to raise more awareness: several institutions, have taken deliberate steps to raise awareness to the public through awareness campaigns.

Each year, April 2nd, is dedicated as World Autism Day, and the month as Autism month. Schools such as Al-Muntazir Special Education needs, the Gabriella Centre and the formation of the National Association of Parents with Autism in Tanzania (NAPAT) are trying hard to make programs for raising awareness.

But, diagnostics must be improved and this should go along with more research to find out any different genetic links with autism.

While there is scientist in Tanzania looking at the genetic phenotype, it is possible to still go ahead and study more to find out if there is any specific genetic make-up in Tanzanian children.