Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder manifesting in early childhood that is characterized by deficits in social-communication functioning and the presence of repetitive behaviors and/or restricted interests [1]. A recent review of epidemiological surveys of ASD worldwide suggests prevalence estimates of 62/10,000.The results of this review do not support systematic differences in ASD by geographical region or ethnic group [2]. However, prevalence estimates of autism spectrum disorder(ASD) for African countries are not available and limited research is available on ASD in Africa [3,4]. Since Lotter’s [5] documentation of the presence of ASD in Africa, subsequent studies have described the clinical characteristics children with ASD in case reports, revealing clinical characteristics similar to those seen in Western societies [6,7,8,9]. Bakare & Munir’s [4] review of available studies on ASD in Africa indicated that the majority of children studied had intellectual disability (ID), severe speech delay, and were diagnosed after age 8 years. For example, in a case series study of children from Tanzania, Mankoski and colleagues noted concern that ASD is rarely diagnosed among children without ID, which implies that the full spectrum of ASD, specifically higher functioning children, may be underdiagnosed [9].

Bakare and Munir [4] propose that stigma and a lack of awareness about ASD amongparents and professionals combine to result in late diagnosis, which results in delayed-intervention and thus low speech and cognitive functioning. This supposition is supported by the works of Igwe and colleagues, who contributed a series of articles concerning the training of healthcare workers in Nigeria [10,11,12]. Their research found that health care professionals and students in the health care professions were in need of education and training in the identification and care of ASD.

Few published studies provide information about ASD in Ghana, though several unpublished documents, most prepared by non-governmental organizations, describe the education and treatment of children with disabilities in Ghana, including ASD. Owusu conducted a needs assessment by interviewing professionals and parents regarding the treatment of communication disorders, including ASD, in Ghana (A needs assessment in speech and language therapy provision for children with communication disabilities in Ghana, unpublished observations, Owusu, 2006). Her research revealed that assessment and treatment resources are available, albeit limited, but parents have difficulty gaining access to these resources due to distance from facilities, time-lim-ited programs, and lack of information. Anthony conducted a study of access to education for students with autism in Ghana (Access to education for students with autism in Ghana, unpublished observations, Anthony, 2009). In Ghana, the majority of children with disabilities are schooled in general education classrooms rather than self contained special education classrooms composed solely of children with disabilities. Anthony’s results suggested that children with ASD did not have access to needed special education services and experienced ostracism and discrimination resulting from the social stigma of having an ASD. Denkyirah & Agbeke have provided the only quantitative study on ASD in a Ghanaian classroom [13]. In this study, teachers were asked to rank the importance of different types of services for preschool children with autism transitioning to kindergarten. The majority of teachers ranked early planning and preparation and collaboration with families as most important, while parent training and assistive technology were ranked as the least important components of transition planning. The nongovernmental organization, Inclusion Ghana, produced a report on the stigmatization and discrimination experienced by persons with ID in Ghana, including autism (Report on the level of stigmatization, discrimination and exclusion of persons with intellectual disability and their families in Ghana, unpublished observations, 2011). This report, which echoed many of the results from Owusu’s and Anthony’s papers, added that a primary factor in the identification of children with ID is lack of health professional’s knowledge of ID, particularly in rural areas.

The developing literature on ASD in Africa has:

1. established the presence of ASD in Africa;

2. described possible trends among a small sample of case reports, and

3. illustrated the need for increased awareness of ASD symptoms among healthcare workers and the general population.

However, more research is needed to inform screening, diagnostic, educational, and intervention efforts. The symptoms commonly associated with autism (e.g. tantrums, sleeping and eating difficulties), have not been described in the literature on ASD in Africa. The current study includes the largest sample to date describing the clinical characteristics of ASD in Africa. The purpose of this study is to increase understanding of the diagnosis, treatment and education of children and adults with ASD. Specifically, the study objectives are:

1. to describe the demographic, medical and developmental characteristics of an urban sample of children with ASD;

2. to describe the educational and therapeutic interventions received by the sample;

3. to describe caregivers’ primary concerns about their children with ASD, and

4. to document treatment needs.

Utilizing questionnaires and a structured interview, the current study gathered information from families of children and young adults with ASD. A summary of demographic, medical, school, and treatment characteristics is presented alongside case reports to illustrate common themes.

Parent and family characteristics are presented in Table 1. The majority of interviewees were mothers of children with autism (64%). Parent marital status was reported to be primarily “married” (92%). The majority of households (64%) contain more than two adults in the home, including extended family members and live-in house help. The median number of siblings was reported to be 2, with the child with autism most likely to be the first (44%) or second (28%) born. The majority of parents were educated beyond high school, with 64% of mothers and 96% of fathers having at least a bachelor’s degree. The mean no of siblings in the family was 2 (SD=1.96).

Parents reported being concerned about their children early in their development (age range 0-41 months), and the average age of diagnosis was 37 months. Table 2 provides the basic demographic characteristics of the children with ASD in the study. All parents in the sample sought medical advice once they became concerned about their child’s behavior or development. The most common reasons for concern were reported to be speech delay (40%) or delays in other areas of development (24%). Medical concerns were the presenting problems in 12% of cases (i.e. seizures, hydrocephalus) and regression was the presenting concern in 8% of the cases. The current median age of children was 9 years. Current symptom severity measured using the ASRS revealed that the majority of children had ASD severity scores in the “elevated” or “very elevated” ranges, with percentile ranks ranging from 73 to 99%.

While all pregnancies were reported to be full term, approximately one-fourth experienced maternal complications during pregnancy (e.g. gestational diabetes, high blood pressure). About one-third of the sample reported maternal or child complications during delivery (e.g. malaria, asphyxia). Table 3 contains medical history information, as reported by caregivers. Few participants had a history of seizure disorder (16%), allergies (8%), or hearing impairment (5%). Prescription medications are used by 24% of the children in the sample (e.g. carbamazepine, lamotrigine, risperdone, albuteral, clobazam). Sleeping and eating difficulties were reported in approximately one-fourth of the sample.

School and treatment history are presented in Table 4. Those children attending school (86%) were in private school settings, the majority at AACT. Children at AACT receive group instruction, speech therapy, behavioral therapy, and recreation. The majority of children at AACT have an assigned paraprofessional “carer” who works with them throughout the day on individual goals. About half of children experienced changes in their schooling as a result of their autism diagnosis, including changing schools (48%) or missing school due to expulsions or while parents searched for more appropriate placements (40%). Few (16%) parents reported seeking assistance from traditional healers regarding their child’s autism diagnosis or symptoms. The majority of the sample (92%) is reported to receive speech therapy through their school or center.

Interviewees were asked to list the services that are needed to help their children with autism. The most frequently reported service needs were speech therapy (36%), teacher education (36%), parent/family training (32%), and behavior management (28%). Similarly, interviewees were asked to list the most challenging behaviors that they encounter in their children with ASD. The most challenging behaviors were hyperactivity (40%), tantruming (36%), lack of communication (28%), and difficulty managing children in public places (28%).

The children and young adults that were the focus of this study were primarily male with severe symptoms of ASD. Participants were identified in early childhood, due to parent concerns about developmental delays, primarily lack of speech. They resided in an urban setting, Accra, the capital city of Ghana, in homes with well-educated parents. As a result, the results of this study are not likely representative of the majority of parents’ experiences. This is similar to Ametepee & Chitiyo’s [6] observation that within the literature on ASD in Africa there is an overrepresentation of parents with high socioeconomic status. The results of the current study depart from those of previous studies wherein the age of diagnosis tended to be in middle childhood. The average age of diagnosis (37 months) is comparable to epidemiological studies of US and UK populations, which suggests that parent education and socioeconomic status are strong predictors of age at diagnosis [16]. Educated parents are more likely to have access to resources that can lead to earlier diagnosis, such as information available via the internet on common signs and symptoms of autism, ready transportation to clinics, and financial resources to pay for private clinic services. The Child Neurology service that provided the diagnostic evaluations for the children in the study is well known to professionals and parents, which also likely facilitated the early presentation of children. Additionally, an obstacle to seeking help is often disability-related stigma. It is possible that the stigma often associated with disability may be less severe for parents in the sample who may view autism as a biogenetic disorder, which can result in less perceived blame for the disorder [17]. These results have implications for the identification of ASD in children from rural areas and those whose parents have less knowledge of child development, and who thus may not seek consultation in early childhood. Similar to previous studies, the majority of children in the current study had a history of speech and language impairment. Health conditions and difficulties commonly associated with ASD, such as restricted eating patterns and problems with sleep onset or maintenance, were found in approximately one quarter of the sample compared to other studies that have reported sleep problems in about half of study samples of children with ASD [18,19]. Few participants received medications commonly prescribed to treat the associated symptoms of ASD. Further, seizures were not treated with medications. Many parents reported being discouraged to attempt suggested medications by family members or school personnel. Reported rates of current or past seizure disorder are consistent with other studies [20,21]. As the majority of the sample was recruited from institutions serving children with ASD, the majority received speech therapy services and attended private schools. While education in Ghana is compulsory, children who are not able to function independently in the regular classroom setting are not guaranteed accommodations, and are often asked to seek alternative settings. This finding corroborates Owusu’s finding that many school-aged children are schooled at home because parents cannot find schools that would admit or maintain them. The absence of special education services in public schools has created the need for private, specialized settings, such as those sites who recruited participants for this study.

With regard to the type of services parents desire, a variety of service needs were reported, including those specifically for parents/families, (e.g. parent training, assistance with behavior management at home, support groups) and for the professionals serving their children (e.g. teacher education and healthcare worker education at ASD). Parents report the most difficulty with externalizing behaviors (e.g. hyperactivity, tantruming). Behavior management in public places was cited as a particular concern, particularly with regard to difficulties with public transportation and negotiating busy open markets. In summary, the findings from this study expand upon what is known about autism in Africa, particularly with regard to the influence of parent education and perceived need for services.

Future research should be conducted with larger sample sizes to allow the statistical power to detect differences among sub-groups and explore relationships among variables. Future studies will need to include participants from less educated families and rural settings in an effort to understand unique challenges of parenting children with ASD in environments with fewer resources. The current sample may not represent the experiences of urban families who are not receiving services; it was largely taken from schools or centers providing services. Despite being highly educated and having sufficient resources to provide access to treatment, the caregivers in this sample cite significant concerns about managing behavior, highlighting the need for additional parent training.