Especificaciones de las prestaciones analíticas

According to literature, the diagnosis of ASD is commonly a complicated, difficult, time consuming process.21,41,48 Given the poor prognosis of this condition, the weight and

implications of such a diagnosis are significant, and diagnosis may be made cautiously, at the expense of efficiency.

In the literature, the age of the child, and the severity of the presentation were shown to impact on the timing of diagnosis.41 The severity of presentation and the prevalence of ASD have been associated with gender, such that more males are affected than females, but the females that do present with ASD tend to be lower functioning.8

The children in this study had a mean age of 6 years and 11months old. The ratio of males to females was 6.8:1 compared to the documented 4.3:1 ratio.8,21,31 The ratio of children

presenting with AD to children presenting with AS was 4.3:1 compared to the reported ratio of 4:1.20,40,41 Co-morbidities were noted in 59% of the study population which is slightly elevated in comparison with international data (6-49%).21,27 ADHD was the most common co-morbid diagnosis (33.3%), despite the fact that the DSM-IV TR criteria state that ADHD is a

differential diagnosis to ASD, and that although high levels of activity and inattention are frequently noted in ASD, an additional diagnosis of ADHD cannot be made in the presence of a diagnosis of ASD.8 While the gender and diagnostic profile of the children in this study was

the small sample size, and can thus not be taken as being representative of the profile of children with ASD in the general South African population.

This study found similar trends and delays in diagnosis to those reported in the literature. Like other studies, the children in the study were diagnosed at an average age of 4 years, 2 years after the caregivers first noted signs and symptoms.41 Very little difference (p=0.7) was noted between Group A and B in this regard. The average age at diagnosis in Group B (public sector) was 3 years 11months, while Group A (private sector) children were diagnosed slightly later at 4 years 2months. This may be affected by the level of involvement of the MDT which seemed to differ between the two groups. Also, Group A included a larger proportion of higher functioning children, who tend to be diagnosed later.41 This may account for the slight difference in the age at diagnosis.

Dysfunction is more marked and thus easier to identify earlier in the development of children presenting with AD compared to children presenting with AS. This is reflected in the average age of diagnosis for the different types of ASD.41 In this study, the difference in the time frames for diagnosis of the different types of ASD was significant (p=0.03) but not as extreme as in Howlin et al’s sample. Children with AD were diagnosed by the age of 3 years and 5 months (compared to 4 years and three months41), 1 year and 7 months after first signs were noted. Children with AS were diagnosed at the age of 6 years and 5 months (compared to 11 years41), about 4 years and 11 months after initial symptoms were noted. The caregivers in Howlin et al’s study tended to note symptoms slightly earlier than the caregivers in this study.41 This may relate to poor community awareness of ASD in SA.

The caregivers of the children presenting with AS expressed significant frustration with misdiagnosis and conflicting professional opinions. They described the limited experience and knowledge of health care professionals and educationalists regarding ASD and its various levels of presentation, as a significant barrier to appropriate service provision, and a cause for mistrust of health care providers.

This finding highlights the complexity of diagnosis with higher functioning children, when distinguishing features between various differential diagnoses become more difficult to identify.21,41,48 The need for specialised, experienced professional services is emphasised. These higher functioning children tend to have a better prognosis in the long term, and have the potential to lead fairly independent lives and maintain some gainful employment. Appropriate early intervention based on an accurate diagnosis is crucial in order to facilitate functionality and assist in preventing secondary co-morbidity such as depression and anxiety, which are common in the higher functioning adolescent and young adult presenting with ASD.21

The diagnosis of ASD is potentially devastating news to break, considering the pervasive effect on the child’s functioning and prognosis. It implies the need for lifetime care and dependence on caregivers. Bax explains that this is a daunting task for a health care

practitioner, and may make the practitioner over-cautious in giving the diagnosis, particularly if there is some doubt concerning the accuracy of the diagnosis. This may lead to further delay in diagnosis, while practitioners continue to observe a child over multiple sessions to ensure correct diagnosis.50 Bax challenges this cautiousness noting that he had experienced

caregivers’ gratitude and relief in learning what was wrong with their child, following their experience of multiple referrals and lack of diagnosis. He reported that children who are diagnosed early can be accepted and understood better by their community from early on, while children, who are not diagnosed until later, tend to be alienated by their community, who do not understand their behaviour and therefore do not make allowances for them. 50

A diagnosis of ASD constitutes “bad news”. Caregivers are likely to experience difficulty in adjusting to the news and accepting the implications the diagnosis has for the child and for the family. The need to provide support and educate caregivers regarding the condition thus forms an important part of the health care practitioner’s role in diagnosing ASD, as highlighted by Nuutila et al.47 While the majority of participants in this study (56.4%) felt they were able to ask questions about the diagnosis and (59%) were given adequate information on the condition and how it would impact on their child’s future, more than 30% of caregivers, didn’t feel they were adequately informed. Some of the caregivers explained that they were simply given the

diagnosis with a brief description of what it was, and told that their child would never be independent or achieve anything, before the session was terminated without further support. This finding mirrored Ruble et al’s finding that resources were rarely given to caregivers to assist in explaining the diagnosis or prognosis of their child.27

The majority of participants (66.7%) in this study received no support in accepting and understanding the diagnosis, largely because they were never referred for this support, or in some cases, due to work-related time constraints which prevented them from attending such appointments. A small proportion (20.5%) of the public group participants were referred to caregiver support groups which they found very helpful. No private group participants were referred to a support group by the diagnosing practitioner.

These findings demonstrate poor quality of service provision, with disregard of best practice principles advocating adequate discussion of the condition with the caregiver, appropriate long-term planning and provision of caregiver support. This practice may compromise the achievement of optimal outcomes for the child.47 Considering the vast body of literature exploring parental stress related to the diagnostic process, and then the significant burden of care experienced by caregivers in caring for a child with ASD43-45, this result is concerning. This lack of support and the limited information given to the caregiver tends to disempower them and leave them feeling hopeless and helpless. The principles of: providing support and adequate information; and building a trusting permanent relationship with clients and their families during the diagnostic phase47, are disregarded. The foundations for the initiation of appropriate management are thus already compromised.