In 1943, the American psychiatrist Leo Kanner used the term “early infantile autism” to describe children who lacked interest in other people. In 1944, an Austrian paediatrician, Hans Asperger, independently described another group of children with similar behaviours, but with milder severity and higher intellectual abilities. Since then, his name has become attached to a higher functioning form of autism, Asperger syndrome as noted by, Kakkar et al, 2017. It was not until the 1980s that the term pervasive developmental disorders was first used.
The term autism spectrum disorders (ASD) has been used to describe their variable presentation. For their part Speaks A, 2011 and Baker et al 1992, stated that there is no exact cause for autism, however, stated that there are speculations of it being caused either genetically or by environmental factors. In a similar vein, there is no known cure for the disability, there is therefore the need for early therapeutic treatment according to various literature sources. Although the cause of these disorders is not yet known, studies strongly suggest a genetic basis with a complex mode of inheritance. The definition and diagnosis of these disorders has been broadened over the years to include milder forms of autism.
The term autism spectrum disorders (ASDs) is currently used to describe three of the five pervasive developmental disorders listed in the Diagnostic and Statistical Manual of Mental Disorders. According to various literature sources, (ASD) is a complex neurological disorder that affects an individual’s brain function and causes impairments in multiple areas of development. ASD has become one of the most common neurodevelopmental diagnoses. Physicians caring for children with autism during the child’s acute illness may face challenges in diagnosis and treatment that can negatively impact quality of care. The difficulties according to the literature stem in large measure form the core features of the syndrome. Specifically, ASD is characterized by impairments in communication skills, impairments in reciprocal social interactions and restricted, repetitive and stereotype patterns of behaviour and interests.
The literature further states that ASD is often accompanied by impairments in cognitive and adaptive functioning, attention deficit, sensory processing disorder, and aggression or self-injurious behaviour and in the presence of an acute illness, it can be extremely difficult to disentangle the core behaviours of autism from other illnesses. Teasing out the core deficits of ASD from an acute underlying medical condition is a real and significant challenge for medical providers. Various researchers have indicated that not all children with autism will engage in aggressive behaviours toward themselves such as head hitting or biting, and presentation with such behaviours may not simply be manifestations of autism.
According to the literature, parents and society need to always consider that abnormal behavioural findings in ASD could potentially be due to a more sinister cause, such as intense abdominal pain from a ruptured appendix, severe headache from an intracranial pathology, or pain secondary to fractures from an unwitnessed trauma. They are even more important clues in non-verbal patients, including many children with autism. To compound matters, new environments are often difficult for children with autism. They are extremely sensitive to environmental stimuli and are highly dependent on predictable routine. The bright lights, smell, and fast pace of the ER can easily overwhelm the senses of an autistic child.
Various literature sources also indicates that the barrage of questioning and interactions with multiple care providers, ranging from ancillary staff to nurses and physicians can be difficult for them to process. Unfamiliar settings or procedures will lead to anxiety, which often manifests as disruptive or aggressive behaviours because of limitations in social and communication skills. In addition, because of cognitive impairments and an inability to understand what is being expected of them, children with autism may become frustrated. This combination of sensory overload, fear, anxiety, and frustration can lead to exacerbation of behaviour and a vicious cycle of confusion for the patient and caregiver alike. So, the very setting in which the physician sees the child can often contribute to an increase in symptoms, all of which can complicate the evaluation of the presenting illness seen in an ER.
Parents of these children face difficulties in dealing with challenging behaviours, communication pattern, and basic life skills. Parents appear to carry the larger burden of care and experience stress related to coping with the heavy load of care giving. Other related challenges may be the inability of the children to fend for themselves, the child’s educational challenges and the stigma and stereotypes that comes with having a child with ASD. For example, at the age of two, most children should be toilet trained; however, this is not the case with children living with autism. At that age they would still have to be assisted in almost every facet of their lives. It makes it very stressful for their caretakers especially their mothers, as noted by Boyd, 2002. Although the symptoms of autism tend to last for a long period of time, it is stated that, it is more difficult for the parents to take care of the child when he is younger or when the child is a toddler.
Stigma and stereotyping is a very common issue for parents with children with autism. The mere fact that parents have a child with that condition is a very hard thing to accept and the situation is made worse when the society instead of giving a helping hand stigmatize you. Stigma therefore is a major challenge of parents with children with autism. This stigma is heightened by the embarrassing comments that people make when they first realize a parent has a child with that condition.
Parents with autistic children are financially strained as they must deal with the financial burden, it may be really expensive to take care of children with autism due to expensive treatments that the children require periodically. As an effort to deal with the challenges and to develop coping mechanisms the literature indicates that some parents have resorted to relying on spirituality. They rely on God and have found solace in the spiritual in order for the supreme being to give them strength to deal with their situation and cater for their children.
Knowing the challenges parents with children with autism face would constitute grounds for support to be given to them by professionals. If the challenges the parents are going through are clearly spelt out, therapists who deal with the families of children with this disorder will know the type of treatments to provide, even if it has not been asked for. Aside helping therapeutic professionals, the findings will also inform the teachers at special schools as to how to draw their curriculum to meet the needs of the autistic children. This goes to show that the findings of this work will make meaningful contributions to policy making research and practice.
Even though, all these challenges are faced by parents with autistic children, much work has not been done in Botswana to ascertain the particular problems that the parents are facing. With this, there is the need for a research work that will look at the challenges that parents with autistic children go through in their daily lives. However, in Botswana positive strides are being made as witnessed recently by the setting up on “Raising the Ladder” to look at the ASD situation in the country as well as the extent to the policy development response. Raising the Ladder is comprised of a group of medical and learner support professionals as well as health policy experts to provide easy and seamingless assistance to children with autism as well as their parents and support structures and by and large to bring to the party the relevant policy actors and stake holders in agenda setting for policy development and response in the country.
Thabo Lucas Seleke, Ph.D Candidate, London, UK & Layani Makwinja, Ph.D Human Development Specialist Child and Educational psychologist
