Parental Perceptions of the Diagnostic Process of Autism Spectrum Disorders in a Greek Sample

Research Article

Austin J Autism & Relat Disabil. 2016; 2(5): 1035.

Parental Perceptions of the Diagnostic Process of Autism Spectrum Disorders in a Greek Sample

Stampoltzis A* and Michailidi I

New York College, Greece

*Corresponding author:Aglaia Stampoltzis, 3, Androu street, GR-151 21 Athens, Greece

Received: September 01, 2016; Accepted: November 16, 2016; Published: November 18, 2016


Diagnosis of Autism Spectrum Disorders (ASD) is complex and parents often experience mixed feelings during and after the diagnostic process. This study focused on Greek parent’s perceptions and views of the diagnostic process relating to their child with ASD. One hundred and ninety three parents of children (N=193) completed a survey, which included information on various aspects of the diagnostic process, measures of satisfaction and perceptions of the post-diagnostic phase. Questionnaires were analyzed from a quantitative and qualitative point of view. Mothers (from the part of the family) and pediatricians (from the part of the professionals) were the first who recognized the early signs of ASD. The average age of diagnosis in the present sample was 4 years. A major finding is that parents whose children were diagnosed before or at 30 months of age held more positive and optimistic perceptions of the diagnostic process in comparison to the ‘late diagnosis’ group. In addition, the present study underlines the important role of various professionals during the assessment, although many parents do not feel satisfied from the diagnostic process. To conclude, the process of diagnosis remains a significant challenge for all those involved in this process. Implications for improvements in the diagnostic process of ASD are proposed.

Keywords: Autism spectrum disorder; Parental perceptions; Parental satisfaction of the diagnostic process; Diagnosis of ASD


ASD: Autism Spectrum Disorders; PDD-NOS: Pervasive Developmental Disorders-not otherwise specified; KEDDY: Centre for Differential Diagnosis and Support (Greek abbreviation)


Autism Spectrum Disorders (ASD) constitute a group of complex neurodevelopmental disorders characterized by impairments in communication, social interaction and restricted repetitive behaviors or interests. According to the Diagnostic and Statistical Manual-V (DSM-V, APA 2013) [1], Autism. They considered potential explanations, including different methodologies, recognition of associated behaviors and the development of specialist services. One part of the observed rise in autism disorders can be explained by the changes in diagnostic criteria and the growth of awareness of parents and professionals. However, the authors recognise that there may have been a true rise in the numbers of children with ASD, which is difficult to measure, without applying current diagnostic criteria to earlier studies [2].

The diagnosis of ASD

Early identification and diagnosis of ASD is a complex process which requires thorough investigations by different health professionals [3]. Diagnosis of ASD is made by recognizing patterns of behavior present in early life, requiring a detailed personal history that links together all the available information [4].Medical practitioners and psychologists generally conduct the diagnosis, although a multidisciplinary approach which includes assessment by a speech pathologist and occupational therapist has also been advocated as being beneficial in providing information that will assist with a diagnosis. Recently published national guidelines in each country aim to help clinicians in the diagnostic process [5].

The diagnostic process and its impact on parents

Receiving a clinical diagnosis of an ASD has an impact on the individual and the family. Assessment of ASD is a complex and ongoing process which involves a considerable amount of time. However, the benefits of an early and reliable diagnosis are many: the parents have access to reliable information about their child, the child has access to appropriate early interventions services [6,7]. Delays in receiving a diagnosis can lead to parental dissatisfaction and this can be a barrier in the implementation of effective support or intervention strategies [8]. Furthermore, parents who experience a long diagnostic delay may lose confidence in the healthcare professionals involved and are more likely to look for alternative treatments for their child which have poor empirical support [9,10]. Delays can also affect the quality of life for family members, the presence of behavior problems, care giving challenges, limited social life as well as increased risk of mental health problems for parents [11,12].

Although the symptoms of ASD can be present in a child as young as 12-18 months of age, the age of final diagnosis differs significantly between studies and countries. Howlin and Moore in a landmark large scale study in U.K found that children with ASD were diagnosed on average at 6 years old [13]. At the end of the 90’s, the age of diagnosis fell gradually. The data obtained by Latif and Williams evidenced a decrease in the mean age at diagnosis for the ASD from 5.9 in the period 1994-1998 to 5.5 in the period 1999-2003 [14]. Mandell et al. evidenced that the average age at diagnosis was 3.1 years for children with autistic disorder, 3.9 years for PDD-NOS, and 7.2 years for Asperger syndrome [15].

The factors that usually hinder early diagnosis are: (a) the variability in the nature of ASD in children, (b) mild symptoms of autism (e.g Asperger syndrome) appear quite later in the child’s life and are less observable, (c) the scarcity of assessment measures suitable for use with toddlers or preschool children, (d) long waiting lists for obtaining a diagnosis, (d) a lack of specialized training among professionals to recognize the subtle, early symptoms of ASD (e) comorbidity with other disorders complicating the diagnostic process (f) a shortage of specialized centers and (g) family’s low income [6,16].

According to Mansell and Morris the diagnostic process involves at least four stages: pre-diagnosis, diagnosis, post-diagnosis and a final stage of acceptance and adaptation [15]. During the period prior to diagnosis, parents are confused with the behavior of their child, they try to explain it and they often feel stressed and worried. Evidence suggests that parents experience frustrating delays before they finally receive an appropriate diagnosis [17,18]. The time of diagnosis elicits mixed emotions for parents ranging from relief, shock, or disbelief to understanding. Most parents find the realization that their child has an ASD upset as they begin to feel the consequences for their lives. The post-diagnosis period is full of concern, hope, disappointment and search for information and support. Acceptance and adaptation is the final stage. Parents can now understand better their child’s behavior and stop blaming themselves for the condition. On the other side, the diagnosis implies that the child will never be completely ‘normal’, and creates worry about the future.

Parental perceptions of the diagnostic process

There is an increasing literature on parental perceptions about the diagnosis of ASD. Smith et al.’s pioneer research described the difficulties which parents and children face on the path to the care in autism in a period of over two decades [18]. Findings show that there has been a progress for the younger group of children in earlier referral and final diagnosis in comparison to the older group of children, but not a corresponding progress in the advice given by the professionals to parents.

Howlin and Moore [17], expanded on the Smith et al.’s study [18], collecting data with over 1200 participants falling in the age range of 2-49 years all over the UK. The average age at which the diagnosis was received was 6 years, which the authors reported as being earlier than before, but still late. Satisfaction with the diagnostic process was found to be dependent on the length of time parents had to wait, the geographical area where diagnosis was received, the child’s age at diagnosis, the child’s current age, delay between first seeking help and confirmation of diagnosis. Howlin and Asgharian [13] analyzing in depth the experiences of 700 parents from the previous study, found that parents of children given a diagnosis of Asperger syndrome had experienced significantly longer delays and greater frustration in obtaining a diagnosis than those with a child with autism. This may happen because children with Asperger syndrome present milder characteristics of autism which remain unnoticed for much more time.

A recent study by Siklos and Kerns [16] on the geographical region of British Columbia, Canada, examined the diagnostic experience of 56 parents of children with ASD. The results indicated that on average, children were being diagnosed at about 5 years of age, while parents experienced significant difficulties obtaining a diagnosis. Parents were particularly dissatisfied by the initial way the diagnosis was disclosed, and parents stated that their reactions followed the stages of the ‘grief cycle’ (e.g., shock, grief, anger, helplessness, and guilt) [19]. In addition, not only were these parents dissatisfied with the initial diagnosis, but they expressed frustration because of the long waiting lists for the services and interventions their children needed after the ASD diagnosis. A more recent study by Saggu [20] in the area of BC, Canada, underlines that the only factor that mattered regarding parental satisfaction of an ASD assessment was the time they had to wait.

Another study in Canada has been conducted by Barrie [21] including 29 parents of children with ASD. The earlier the parents are concerned about their child, the younger the children received diagnosis. Parents also reported that their persistence was a major factor in obtaining diagnoses. They also described feelings of relief and gratitude when they received the diagnosis.

A French study by Chamak et al. [22] enabled the comparison of the practices of the professionals now and in the past in relation to the autism diagnostic procedure. According to the authors, currently the diagnosis is obtained much earlier than the previous decades, around the age of 3 years old ±1 year. The mean delays between first consultation and diagnosis were significantly reduced. Regarding the way the diagnosis was announced, 63% of the parents of children with autism and 93% of the parents of adults with autism were dissatisfied. Being given the diagnosis with a large amount of information and help, contributes to decrease the degree of stress that parents experience when facing the disclosure of their child’s diagnosis. The latter is also reported by Osborne and Reed [23] who investigated parent’s perceptions of communication with professionals during the diagnosis of autism. Goin-Kochel et al. [24] conducted a large scale web-based study in five countries to determine parental level of satisfaction with the diagnostic process of ASD. Higher levels of parental education and income were associated with earlier diagnosis and greater satisfaction with the diagnostic process. Parents were more satisfied with the diagnostic process when they saw fewer professionals to get the diagnosis and when the children received the diagnoses at younger ages. However, 40 percent of the sample reported that they were not satisfied with the diagnostic process.

Gaitonde [25] surveyed 126 parents of children with ASD in the United States. He found that the diagnosis of autism is becoming more systematic and is being received at much younger ages. In this study no link between current stress of parents and satisfaction of services was found. Parents living in rural areas did not differ significantly from those living in urban areas. However, parents of children with other diagnoses (Asperger’s and PDD-NOS) reported being more satisfied with speech therapy and special education at school than the parents of children with autistic disorder. Gaitonde [25] underlines that although the analyses did not yield significant correlates of stress, it was clear that parents were experiencing stress. This stress may be exacerbated by the fact that professionals do not spend time discussing parent’s emotional reactions and coping strategies.

Generally, since autism is a spectrum disorder, it may be difficult to pinpoint the stress stemming from the unique challenges faced by parents in different countries and various public health systems. In reviewing the relevant literature, parents seem to express more satisfaction from the diagnostic process when the following issues are addressed: Firstly, there are no long waiting lists to obtain a diagnosis. Secondly, the manner in which the professionals disclose the information differs significantly. Professionals who were sensitive, knowledgeable and supportive are highly preferred. Thirdly, the amount of information given was an important factor in high satisfaction ratings. Parents were more satisfied with a significant amount of information than less, and if they had the opportunity to ask questions throughout the session [26].

ASD in Greece: The issue of assessment and diagnosis

Autism prevalence is an issue that requires further study in Greece, as no studies have been conducted using globally standardized methods and diagnostic tools. According to Autism-Asperger Hellas [27], a non-govermental organization which tries to raise public awareness of ASD, the number of children and adults with ASD is assumed to be proportional to the population of the country. The Centre of Educational Research [28] reported an increasing number of children with autism from 2004 to 2006 in the public school population which was estimated to be around 1%. However, there is no other data to cross check the results.

Diagnosis still remains a complex experience for parents and children in Greece. It is provided by government funded (public) and private organizations. Important steps have been made by changes in legislation and the establishment of multi-disciplinary teams for the diagnosis of autism and other special needs in each perfecture of Greece (Government Gazette of the Hellenic Republic) [29]. However, early intervention is mainly provided by private centres. According to Ververi et al. study [30] in a clinical, laboratory population, the mean age of diagnosis was 43.7 months in a sample of 222 children aged 1.5- 9 years from Northern Greece. Significantly earlier diagnoses were obtained in children with comorbid disorder (eg. epilepsy, hearing problems, genetic/metabolic disorders etc). This study underlines the importance of early identification of children with ASD in Greece through the appliance of screening and surveillance programs.

Parents play an important role in defending the rights of the autistic children in Greece and raising public awareness. Kalyva [31] explored the relationship between parents of ASD children and mental health professionals after an intervention with a partnership protocol. She found that after the intervention, parents expressed significantly more positive attitudes towards mental health professionals. The information that parents receive from mental health professionals was more important to them than sympathy or psychological support.

In a study by Kourkoutas et al. [32] exploring the impact of autism on parents, 24 parents were interviewed to express the problems they experience everyday when dealing with a child with autism. Most parents clearly described being overwhelmed by negative feeling immediately after the diagnosis. The following reactions are described by them: shock, distress, denial of the truth, helplessness, depression even shame towards the rest of the family. A significant finding was the low quality of the services provided to children and the intense feelings of disappointment that parents experience in their relationships with professionals. Because of the small number of parents in the former study, we decided to explore parent’s perceptions and attitudes towards the diagnosis of autism in a larger sample of parents all over Greece.

The main research questions of the present study are:

(a) How do parents perceive the diagnostic process?

(b) Which are their levels of satisfaction from the diagnostic process?

(c) Which are their feelings and thoughts after the diagnosis?

(d) How do ‘early diagnosis’ versus ‘later diagnosis’ impact on parent’s perceptions and feelings?



Parents were recruited from three local associations of parents with children with ASD from different parts of Greece. The researcher invited the associations to inform their members about the purpose and the nature of the study, and explained that their replies would be anonymous and confidential. It is indicated that parents could contact her to obtain the attached file with the questionnaire or to fill it in directly on the Internet. In addition, 75 questionnaires were sent to the autistic associations by post for parents who prefer to answer and return the questionnaire by post. Because of the double data collection methods, information on the total number of the parents approached is missing. As a result, we put a time limit for the data collection which was the period of four months. During this period any parent can access the questionnaire via internet or through their local associations of autism. The sample of the research was comprised of one hundred and ninety three parents of children with ASD (N=193). The basic demographic characteristics of the sample are presented in Table 1.