Access to resources for diagnosis and intervention for children with ASD in South Africa appears to be limited in some families. These findings are discussed in this research study, with particular emphasis on the implications for early intervention in South Africa.
Rationale & Introduction
Rationale
High levels of parental stress can be compounded as they often have to wait years before an accurate diagnosis of ASD is made (Layne, 2007; Siklos & Kerns, 2005). This study will document the experiences parents face in the period before and after an accurate diagnosis of Autism Spectrum Disorder (ASD).
Introduction
This research consists of the subjective stories of parents in the years leading up to and following the diagnosis of an autism spectrum disorder in their children. The results are reported via themes and excerpts from the transcripts of the parent conversations.
Literature Review
Autism: Definitions & Features
- History of Autism
- Definitions of Autism: Potential Problem Areas
- Subcategories of Autism
- Features of ASD Individuals
- Prevalence of Autism
- Aetiology
Over the last few years, the idea of Autism has been expanded to Autistic Spectrum. The idea of a spectrum of autistic disorders is one of the possible reasons for the increase in incidence rates.
Issues in Diagnosis
- Early Diagnosis: Importance and Difficulties
- Early Diagnostic Tools
- Research into Diagnostic Processes
Furthermore, the language and social skills (or deficits in them) needed to determine whether a child with an ASD is diagnosable cannot be found or assessed in very young children (Mooney et al., 2006). In their multi-country survey (America, England/Ireland, Canada and Australia/New Zealand) Goin-Kochel et al. 2006) concluded that parent satisfaction increased with fewer professionals seen before diagnosis and the younger the age of the child at diagnosis.
Impact on Parents and Families
- Parents‟ Experiences
- The Grieving Process
- Depression and Stress
- Broader Family Impact
Research like this indicates that valuable time in the form of early intervention is lost in the lengthy process of diagnosing an ASD. There is much evidence that an ASD child significantly affects neurotypical siblings (Bagenholm & Gillberg, 1991; Hastings, 2003; Kaminsky & Dewey, 2002).
Conclusion
Much research has shown that social support determines positive outcomes for all families of children with disabilities, including autism spectrum disorders (Bristol, 1987;). This study aims to bridge this gap by qualitatively exploring parents' experiences within the South African context.
Research Design and Methodology
- Research Questions
- Research Design
- Research Methodology
- Sample
- Procedure
- Data Analysis
- Data Management
- Familiarisation and Immersion
- Inducing Themes and Coding
- Elaboration
- Interpretation and Checking
- Credibility and Trustworthiness
- Credibility
- Transferability
- Dependability
- Confirmability
- Ethical Considerations
- Informed Consent
- Confidentiality
- Beneficence
- Nonmaleficence
- Conclusion
An explanation of the research study and the participant's role in the study was explained by telephone before the appointment time. Difficulties in the research process and variations within the parameters of data collection were taken into account by the researcher in the analysis phase of the study.
Results
Demographic Information
Experiences Leading up to Diagnosis: Quantitative Findings
- Number of years and medical professionals required to make a diagnosis
- Types of professionals consulted
- Types of medical procedures used in the diagnostic process
This in turn led to a number of referrals, as the lack of certainty among paediatricians seemed to be great. Along the journey to diagnosis, all participants reported that their ASD children also underwent other types of medical assessments. Joanne insisted that metabolic and chemical tests be carried out on her son, which proved to be extremely important as he was then diagnosed with a rare metabolic disorder known as LCAD (Long Chain Acyl-CoA Dehydrogenase), on top of his Asperger's diagnosis. .
The most common medical assessments, involving four of the seven participants, were CT scans and blood tests.
Experiences Preceding, During & Following Diagnosis: Qualitative Findings
- Pre Diagnosis Experiences
- Diagnosis Experiences
- Post Diagnosis Experiences
We've been told many times that we don't have to have that name, but it really, really is. You're not wallowing in the dark wondering, "What do I do, where do I go?" It's easier to be open with people and say, "That's her, she's autistic." We were still in the state of denial, where it is something that will go away.
You know that it will take a long time to accept that 'this is it', and that you will have to deal with it for the rest of your life. And it was constantly looking for other answers, hoping it would steer you away from that initial diagnosis. It must be a mistake; you keep feeling like he made a mistake.
Advice to Other Parents
Research autism, and if you go to a therapist, follow what they do.” You just have to accept that it is what it is, there's only so much you can do, you try your best, you do what you can, we're not therapists, we don't have special insight that you don't have, and we are just ordinary people trying to make a reasonable living for ourselves. Don't come with me and say this global delay what, why is there a global delay?'' There are reasons for global delays, he wasn't bumped on the head or fell out of his chair, he's not cerebral palsy. , and he's not epilepsy, he's not ADD, and I can go on.
I'm not necessarily saying he's autistic, but I've worked with a lot of kids who have it to a greater or lesser degree. Find someone who knows what they are doing, who doesn't buy your denial, this is pretty important, but someone who is compassionate.
Conclusion
If you have any inclination or someone has mentioned the fact that the child is on the Autistic Spectrum Disorder or you are unsure or dissatisfied with the diagnosis made by someone else, go to a specialist, and probably a Neuro- pediatrician or someone who , you get Educational Psychologists who are incredibly knowledgeable about it.”.
Discussion
Difficulties with Diagnosis
- Average number of years and medical practitioners for diagnosis
- Misdiagnosis
- Early diagnostic tools
- Early diagnosis
- Importance of early intervention
This misdiagnosis may have affected earlier intervention and was most likely influenced by a lack of awareness among professionals about ASD and the availability of early diagnostic tools. Research by Goin-Kochel et al. 2006) states that a possible reason for this may be a lack of professional knowledge about ASD. Parents in this study recognized that these signs of ASD were evident from a young age in their children.
Mothers in this study believed that had they been aware of ASDs and had been aware of early warning signs, earlier interventions could have been initiated for their children.
Parents’ & Families’ Reactions to Diagnosis
- Parents‟ experiences
- Siblings‟ experiences
- Financial implications
The process of diagnosing ASD is extremely difficult for parents. Participants in this study highlighted the enormous financial burden associated with having a child with ASD. A study by Loynes (2000) found that the financial burden of having a child with ADHD is a huge burden on the child.
Due to the wide range of therapies that a child with ASD needs, the financial burden on parents is often high.
Aetiology
Lack of Facilities & Support
This is also highlighted by Fujiura (1998) who found that in many cases families have become the single largest provider of support for their children with ASDs and in many cases are a. Numerous studies conducted in the USA and UK also reflect these concerns and emphasize that one of the most common complaints from parents is the lack of accessibility and availability of quality facilities and services for ASD children (Shacar, 2006). The above information highlights a significant need in South Africa for greater educational facilities and support structures regarding ASD to be implemented and established in South Africa.
Prevalence
South African statistics on the prevalence of ASD are expected to be in line with those in Europe and the US, at 15 to 40 per 10,000 births. It is believed that a very small proportion of South African individuals with ASD have actually been diagnosed due to the significant lack of access that the majority of the population has to diagnostic services.
Broader Importance of an ASD Diagnosis
Existing Research & Contribution of this Study
Conclusions and Implications for South Africa
The capacity of public health sites (from provincial hospitals to rural clinics) needs to be improved through training professionals and upgrading facilities to diagnose ASDs. There appears to be a need for the South African medical curriculum to include training in developmental disorders so that doctors are exposed to ASDs during their years of tertiary education. How much more is the need for adequate facilities to be created and made available to disadvantaged members of our society.
There appears to be a need for further support and understanding of families with ASD children, as the impact on them has in many cases had far-reaching effects on the lives of siblings, parents and marital relationships.
Conclusion
Overview of Study
Limitations of this Study
The sample of research participants in this study is not representative of the South African population on a number of levels, such as racially and economically, so further research is needed to gain insight into more diverse experiences. This makes a diagnosis of ASD inaccessible and extremely difficult for the majority of the South African population. It is likely that the incidence of ASD children is equally distributed at all levels of society; however, many population groups still do not have equal access to medical facilities necessary to make specialized diagnoses such as ASDs.
Therefore, it should be noted that the generalizability of this study to the wider South African population is limited.
Considerations for Future Research
All participants were in a similar financial income bracket, allowing them access to a range of medical professionals, services and facilities. This study has identified a number of areas of urgent need in South Africa in the field of autism spectrum disorders. These include health policy, medical curriculum, support and facilities for ASD families, public knowledge and awareness of developmental disabilities, and the critical need for equal access to diagnostic procedures and interventions for all population groups in South Africa.
As previously mentioned in this study, the incidence of ASDs appears to be increasing and, whatever the reasons for the rising numbers, the urgency for diagnosis and effectiveness.
Final Comments
Examining the services received by young children with autism and their families: A survey of parent responses. A review of the research to identify the most effective models of best practice in the management of children with autism spectrum disorders. Assessment of the diagnostic experiences of a small sample of parents of children with autistic spectrum disorders.
Early social interaction project for children with autism spectrum disorders starting in the second year of life: a preliminary study.
