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Autism is becoming a big piece of social and economic crises

World Autism Awareness Day aims to put a spotlight on the hurdles and challenges that people with autism and their families face every day. As a growing global health issue owing to its increasing exposure in the press and common knowledge, autism is an issue that is only gaining more understanding and activities are planned every year to further increase and develop world knowledge of children and adults who have autism spectrum disorder (ASD).

Although awareness raising shows improvement in Ethiopia, it is far behind when compared to what is supposed to be done. In Ethiopia, autism has been getting media coverage mostly on April 2, the World Autism Awareness Day celebrated by the two nongovernmental organizations – the pioneer Joy Autism Center and the second one Nehemiah Autism Center. Autism doesn’t seem to be an issue for concerned government officials and professionals. As a result the service provision couldn’t increase in parallel with the escalating number of victims. A study by Global Mental Health (2016), witnessed this fact. According to the study, there is a great lack of autism awareness and stigma levels are high. It also revealed that few service providers are located in Addis Ababa and inaccessible to the majority of population living in rural areas.

Why autism needs special emphasis?

Autism prevalence figures are growing at an alarming rate. Although there is no study about the prevalence rate of autism in Ethiopia, statistics from the US Center for Disease Control and Prevention (CDC) estimates that autism’s prevalence rate is about 15 percent, when compared to 2012 which was one in 68. Now it is estimated to be one in 59. According to the World Health Organization (WHO), globally, one in 160 people are estimated to be living with autism. Other research findings estimated that it is one in 100. The New York Times (May 9, 2011) revealed that an international team of investigators from the US, South Korea, and Canada estimated the prevalence of autism spectrum disorders (ASD) in South Korea to be 2.6 percent of all children aged seven to 12. It is more than twice the rate usually reported in the developed world.

Autism cost is skyrocketing. A recent study estimates the average cost of ABA therapy for a child diagnosed with autism to be USD 60,000 per year from when he/she is diagnosed (typically at age three) until entering school age six or seven. The total cost for these four years of treatment is about USD 240, 000. According to Autism Speaks, the world’s leading autism science and advocacy organization, since 2006 the annual costs of autism has more than tripled to USD 126 billion in the US and has reached USD 54 billion (GBP 32 billion) in the UK.  The lifetime care of an individual with autism is highest for those with intellectual disability, which costs some USD 2.3 million. The cost of autism in the US alone is greater than the entire Gross Domestic Products (GDP) of 139 countries around the world.

Bob Wright, co-founder of Autism speaks, said, “Autism is global public health crisis. The costs are staggering and will continue to rise as prevalence continues to increase. We know that early diagnosis and treatment are critical, so it is imperative that the US and governments around step up their commitment to helping people living with autism today. The investment we make now is essential to reducing the long-term costs of autism.”

Individuals with autism spectrum disorders and their families face major challenges including social stigmatization, isolation and discrimination. Children and families in need, especially in low-resource contexts, often have poor access to appropriate support and services. In that regard, in 2014, the sixty-seventh World Health Organization assembly adopted a resolution WHA67.8. The resolution, which is entitled "Comprehensive and coordinated efforts for the management of autism spectrum disorders (ASD),"  was supported by more than 60 countries.

The resolution urges WHO to collaborate with Member States and partner agencies to strengthen national capacities to address ASD and other developmental disorders. Ethiopia was one of the signatories in this resolution.

Despite the above facts, there are a number of reasons why autism needs due attention in Ethiopia. According to a survey I conducted in 2010 at the Nehemiah Autism Center, due to lack of facilities and schools that enroll their children with autism, 28 mothers were already forced to become housewives to take care of their autistic children. Other 29 mothers and 57 fathers who are engineers, lawyers, medical doctors, bankers, teachers, and businesspeople were forced to stay at home and take care of their children with autism. The Global Mental Health study findings suggested that the existing diagnostic and educational services for children with autism are scarce and are largely confined to Addis Ababa. Families of children with autism experience practical and psychosocial challenges, including severe stigma. Lack of culturally and contextually appropriate autism instruments is an important problem to be addressed.

The implication of the costs of autism is also reflected on parents who are educating their children in private schools. Besides paying the regular school fee like any typical children, they are required to top up and hire a shadow teacher on their own. Some of the parents who can afford to hire special needs educators and psychologist spend more   for additional intervention at home. By the way, private schools need to be encouraged for enrolling autistic children despite the challenges they face by parents who have children without special needs and consider autism to be a communicable disease due to lack of awareness.

How long does it take to put policies and strategies on the ground?

There are a lot of international agreements that our country has signed including UN resolutions to develop inclusive policies. The UN Convention on the Rights of Persons with Disabilities in 2007, which was ratified it in 2010, and the International Declarations and Conventions that states education as a human right are two worth mentioning. Based on the international agreements, there are policies and strategies developed in different ministries. For example, the Ministry of Education designed a strategy for special needs education during the Education Sector Development Program (ESDP IV). However, it couldn’t be materialized on the ground and as a result it was revised in ESDP V, and a 10-year (2016-2025) Master Plan for Special Needs Education/Inclusive Education was introduced. I highly appreciate the master plan even if it has gaps regarding autism. It is very comprehensive and gives emphasis on other disabilities that are already known and have even established national associations. Although all disabilities and disorders need to be treated equally, due to its feature and the reasons I mentioned above, autism requires special consideration. Let alone as a disorder that needs special consideration, I don’t think autism has been accorded equal recognition as other disabilities in the master plan.

I have observed complacent government officials regarding the issue. The ESPD IV evaluation proved that insignificant work has been done in the five years concerning special needs education/inclusive education.  On the contrary, autism is increasing faster than ever. It keeps on showing the effects on children who don’t have early intervention. Children that need early intervention grow and when they reach their teens it will become difficult to manage their behavior. Two years again have gone since the implementation of Master Plan for Special Needs Education, which many hoped would be a solution for children with special needs. However, the implementation couldn’t come to the ground especially for children with autism and related disorders.

Taking the experiences of other countries and contextualizing it with our country’s reality, particular emphasis and appropriate consideration should be given by the government structures. In my opinion, the Ministry of Health, the Ministry of Labor and Social Affairs, and the Ministry of Education all need to work together as it requires their involvement. Earlier diagnosis is crucial because early intervention affords the best opportunity to support healthy development and deliver benefits across the lifespan of the children. A wide range of resources for recognizing early signs of autism and for accessing support and services should be available in the country.

I would like to share what Prof. Martin Knapp of the London School of Economics and Political Science told BBC News about autism, “We need to use our resources earlier, identifying people earlier and try to provide therapies and support that makes it easier to manage the condition, adding new government policies were also needed to address the enormous impact of families.”

Ed.’s Note: Getaneh Abera is Managing Director, Pyramid Education Consulting. He is an ASD and SLCN Consultant. The views expressed in this article do not necessarily reflect the views of The Reporter. He can be reached at [email protected]

Contributed by Getaneh Abera