Study reveals why parents sought medical attention before child was diagnosed with ASD
Parents in Accra, Ghana discuss what kind of behaviors led them to take their child to the doctor where the child was diagnosed with autism
What was the context of the study?
62 out of every 100,000 children is diagnosed with autism spectrum disorder (ASD). The prevalence in Africa is unknown, however it is confirmed that ASD is present in Africa. ASD in Africa has later diagnosis and increased severity due to the delayed diagnosis. Intellectual disability (ID) is a common symptom in African children with ASD, which raises fear that children that do not display ID are underdiagnosed. There is a stigma and lack of knowledge on ASD in Africa which contributes to the lack of information on prevalence. Limited resources are available for parents; however, they are limited. Parents struggle to access these resources due distance, time limits, and lack of knowledge.
What methods were used in the study?
Data collection took place in July of 2012 in Accra, Ghana. The sample consisted of 25 participants most of which were children (n=10 3 to 5, n=13 7-13, n=2 19 & 30). Participants and parents were interviewed to obtain demographic information, symptoms, education, treatment history, medical history, developmental history, needs, and medications. Next, the DSM-IV TR subscale of Autism, Spectrum Rating Scales was used to assess the severity of ASD in the participant.
What did the study find?
The onset of concern for parents was when the child was aged 0-41 months and the average age of diagnosis in this sample was 37 months old. Parents reported seeking medical attention because the child had a speech delay (40%) or another developmental delay (24%). 72% of parents sought medical attention because they were worried about a medical issue such as seizures or hydrocephalus. It was found that most children were found to have "elevated" or "very elevated" forms of autism with percentiles ranging from 73% to 99%. When it came to causes, 25% of women experienced complications during pregnancy such as gestational diabetes and/or high blood pressure. 33% of mothers recalled complications during delivery of the child including malaria diagnosis and asphyxia. For the children with ASD 16% had a history of seizures, 8% had a history of allergies, and 5% had hearing impairments. 24% of the children were taking medications (carbamazepine, lamotrigine, risperidone, albuterol, clobazam). 25% of parents reported difficulties with feeding the child and the child’s sleeping pattern. In the sample 86% of the children were in private school, so they had access to group instruction, speech therapy, behavioral therapy, and recreation. The parents reported needs were as follows: speech therapy (36%), teacher education (36%), parent/family training (32%), behavioral management (28%). The reported issues by the parents were hyperactivity (40%), tantrums (36%), lack of communication (28%), and managing the child in public (28%).
What were the conclusions of the study?
This study was conducted in an urban setting and the parents were educated. Thus, it is not representative of rural areas because the families in this study have the resources and knowledge to seek medical attention. This stresses the importance of conducting research in rural areas, as these populations can be marginalized. Moving forward, it is important to conduct research with a larger sample in order to see the relationship that different demographics play in ASD. Despite the higher education, parents still reported difficulties with managing the child, solidifying the need for more parent training in regard to ASD.
Thomas, P., Badoe, E., Akva, N., Owusu, N. (2015). Family Perspectives of Autism Spectrum Disorder in Urban Ghana. Journal of International Child Neurology Association, 15(107). Doi:10.17724/JICNA.2015.107