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

  

    
 
    
Responses
    
Percent of     Cases
  
  

    
N
    
Percent
  
  

    
I was confused
    
91
    
21,1%
    
48,4%
  
  

    
I didn't know what to do
    
58
    
13,4%
    
30,9%
  
  

    
I felt shocked
    
93
    
21,5%
    
49,5%
  
  

    
I felt anger
    
41
    
9,5%
    
21,8%
  
  

    
I thought 'why me'
    
73
    
16,9%
    
38,8%
  
  

    
I felt relieved
    
39
    
9,0%
    
20,7%
  
  

    
I thought the diagnosis was wrong
    
37
    
8,6%
    
19,7%
  
  

    
Total
    
432
    
100,0%
    
229,8%
  

Table 3:  First thoughts after the diagnosis.

In addition, the diagnosis seems to have a positive impact for many parents. 50,8% of parents agreed and 19,7% strongly agreed with the statement that the diagnosis help them to take decisions about the needs of their child. 50,8% of parents agreed and 30,1% strongly agreed that after the diagnosis, they understand better the behavior of their ASD child. As far as the siblings are concerned, only 26,4% of parents agreed and 8,8% strongly agreed with the statement that the diagnosis helps the sibling understand better the child with ASD. The diagnosis helped parents to stop blaming themselves in around 40% of cases, while the remaining 60% of parents continued to blame themselves after their child received a diagnosis.

Inferential statistics

Inferential statistics were used to check the effect of certain demographic variables on parent’s perceptions and feelings. As far as the sex of the parent is concerned, mothers were the first who noticed child’s difficulties in comparison to the fathers [χ² (1)=18,861, p=0.000]. The sex of the child was found to be associated with pediatrician as the first person who noticed child’s difficulties [χ² (1)=4,059, p=0.04]. This means that pediatricians observed more often difficulties in boys rather than in girls. Severity of autism was found to be associated with a feeling of relief to get the diagnosis [χ² (2)=7,564, p=0.023]. More specifically, 28.1% of the parents with children with mild autism are relieved when they get the diagnosis, in comparison with 16.2% and 10.8% of parents with children with medium and severe autism respectively.

Another set of analysis was performed based on the time of ASD diagnosis. Children with ASD were divided into two groups: a) an early diagnosis group: parents with children diagnosed with ASD at or before 30 months of age and b) a later diagnosis group: parents with children diagnosed with ASD later than 30 months of age. Chi square analysis revealed that there is a significant association between the group of diagnosis (early or later) and the following variables: parent’s first concern about child’s behavioral problems [χ2 (1)=5,787, p=0.016], parent’s first concern about lack of symbolic play [χ2 (1)=5,137, p=0.023], parent himself or herself noticed first the problem [χ2 (1)=5,203, p=0.023], nursery teacher first noticed the problem [χ2 (1)=13,854 , p=0.000], denial of the problem [χ2 (1)=5,934 , p=0.015],, talk first to the paediatrician [χ2 (1)=7,174, p=0.007], early intervention program, [χ2 (1)=5,641, p= 0.018] and special education program [χ2 (1)=11, 569, p= 0.001]. To sum up, the time of diagnosis has an influence on parental perceptions, emotions and decisions. In other words, the earlier there were concerns about children’s development, the earlier the children were referred for evaluation and the earlier the intervention started.

Analysis of parent’s responses to the open-ended question

Parent’s answers to the open-ended question ‘Note something that you think important as far as the diagnostic process is concerned’ were transcribed verbatim and analyzed through thematic analysis [35]. Two researchers read the transcripts and determined the themes. Five main themes were identified: a) positive aspects of the diagnosis, b) negative aspects of the diagnosis, c) instinct and intuition d) advice to other parents and e) factors which do not facilitate diagnosis. Below are selected quotations of the participants for each theme.

a) Positive aspects of the diagnosis

‘I think that the diagnosis was short and effective because we were in Athens and all the specialists were well informed about autism’.

‘The first diagnosis was correct and it has never been questioned later on. However, the diagnosis was confirmed 4 years later when my child showed his real profile and strengths. Searching various sources of information through articles and books, contacting foreign institutions helped me to decide about the therapeutic interventions for my child. In addition, I was better prepared to observe the changes in the behavior of my child and discuss with specialists and teachers how to support him in each developmental stage’.

‘Parents should not be afraid to seek for a diagnosis whatever symptoms they see to their child. In addition, fear and shame have no place in their life. The earlier the diagnosis is made, the better the development and course of life for the child’.

b) Negative aspects of the diagnosis

‘Unfortunately 10 years ago before when we looked for a diagnosis, we suffered a lot. Today for us who live in small cities there are no clinicians and educators to train our child with autism. Diagnosis is important but it has no value when treatment is unavailable’.

‘The pediatrician told us about our child with no sensitivity. She told us that we had to visit a child psychiatrist for further consultation. When we went to a public hospital, they didn’t tell us the whole truth which was unacceptable because we didn’t help our child early and many times we came into conflict with the therapists and with each other as parents’.

‘I felt alone. Doctors, psychologists and psychiatrists disagree with each other about the diagnosis. The first specialist spoke us about autism, the second said no, and we asked for a third opinion to come to a diagnosis. At the end, I was searching the internet to find information and see what to do’.

c) Instinct and intuition

The diagnosis came at 5 years old but I knew that something was different from the age of 2. We did many treatments but the most important is to understand the world of your child and conversely to help him understand your world. Therapists follow specific steps in their work to come to a diagnosis but the basic therapist is the parent.

After watching a film about autism on TV, when my son was 1 year old, I suspected that my child was in the autistic spectrum. I was not surprised when I got the diagnosis. Today, after 12 years I can say that I am proud and lucky because I have this little angel in my family.

d) Advice to other parents

‘When my son was 1 year old I saw a movie about autism in TV and I understood that my son is autistic. As a result I did not feel shocked when the diagnosis came. After 12 years I can say with certainty that autism is a different way of thinking and living. Early diagnosis is the most important thing. Parents should not afraid to talk with specialists about their child and they should not be ashamed of him. I thank God who opened my eyes early enough and now I enjoy and share my life with my little angel’.

‘Parents should not be afraid of asking for help. The sooner they accept autism, the better they help their child’.

‘The diagnosis broadened my horizons. I expanded my knowledge about autism and I was able to support other parents with ASD children’.

e) Factors which do not facilitate diagnosis

‘It is really sad that parents have to discover alone ‘everything about autism’. There is no guidance for early screening of autism. If you are not informed or don’t have people around you who knows about the problem, you waste valuable time. I believe that all children should be given a screening test around the age of 3 years old to identify symptoms and plan early intervention’.

‘In the province there are no specialists who are well informed about autism. Parents are looking for the solution alone. The state doesn’t give the direction. In addition there are many different specialists and the parent gets confused at the end. Many times parent’s psychotherapy is not recommended and it is false’.

‘No information about the everyday life with a child with autism and what to expect from it.. Unfortunately all the types of pervasive developmental disorder are put under the umbrella of autism. Each child is different although some characteristics are the same. It is sad that even the doctors themselves do not know enough about mild symptoms of autism. There is no awareness in contrast with other countries’.

Discussion

This is the first Greek study exploring aspects of the diagnostic process of ASD with reference to parents and children. A large number of parents took part voluntarily in the study which shows an increasing interest about autism among parents from different parts of Greece. The sample of the ASD children in this study shares common characteristics with the sample of an older Greek study [36] in terms of sex, type of ASD and educational placement of the children.

This study calculated the age at which the child presented the first warning signs of autism, the age of the first evaluation and the age of the final diagnosis. On average, families first became concerned just after the child’s second year of life (at the age of 2 years and 3 months). This finding has also been reported within the recent extant literature [37]. The first evaluation was conducted on average at 2 years and 11 months while the final diagnosis was obtained at 4 years. For the latter, the standard deviation was 26 months (more than two years) which means that some children (and consequently their families) still experience long diagnostic delays between first evaluation and final diagnosis. However, in comparison with the study of Stampoltzis et al. [38], the present study suggests a small improvement in the time of diagnosis over the last years. Although research suggests that the average age of diagnosis is decreasing over time, it is still relatively high given the importance of early intervention.

Another aspect of the diagnosis which is also mentioned by others is that parents are often the first who recognize the early symptoms of ASD [21,37] (e.g delayed speech, difficulties in social communication, obsession or repetitive movements etc). Especially, mothers noticed more often children’s difficulties than fathers. Although the parents are ‘inexperienced’ in the field of autism, they were the first to notice that ‘something is different’ in the child. This finding is enlightened by parent’s comments in the qualitative part of the study.

The paediatrician was the first who noticed child’s difficulties, more often in boys. This means that if doctors are properly trained, they can sustain parents in the path toward the diagnosis. Public hospitals, KEDDY and psyscho-educational centres were preferred by parents for the final assessment, while private doctors (paediatricians or family physicians) were preferred for the first assessment. Maybe the later are easily accessible and do not have long waiting lists. Geographical area seems to have an effect on the diagnostic process. The capital of Greece has the most diagnostic centers and attracts parents from all over Greece. Parents from small cities or villages have difficulties in accessing diagnostic services and this result is supported by the personal account of the parents in the qualitative part of the study. A similar comment is made by Gething suggesting that parents who live in rural areas may have to cope with the unavailability of services due to scarcity of trained and experienced professionals in their area, difficulties in transportation and increased expense for accessing services [25,37].

Another issue explored in our study is how many specialists families see during the process of getting an ASD diagnosis. Greek parents although they trust the public health institutions for assessment, they see and seek help from a variety of professionals (50% the families saw two or three professionals, 13% of them saw four to five professionals and 10% more than five). Essentially, the more specialists a child saw during the diagnostic process, the older he or she was when finally receiving the diagnosis. However, parents may include in this count the specialists they visited for counseling or discussing suitable interventions for their child after the diagnosis, and this may have been construed as part of the diagnostic process. Further research is needed to investigate this. Goin-Kochel et al. [24] found in their study that parents reported visiting, on average, between four and five clinicians en route to the ASD diagnosis.

The communication of the diagnosis to parents is a crucial point and a very important moment. Information, explanations, help and understanding are necessary as well as sufficient time to understand the diagnosis [22]. This is not always the case, as illustrated by the parent’s reports especially by parents whose children are now older. Some parents are still feeling the impact, remembering the expression and the style of delivery of the diagnosis (see themes b and e of the qualitative part of our study).

The present study also survey parent’s feelings of the assessment and diagnostic process. Parents seem to be moderately or little satisfied from the diagnostic process, a finding which is not surprising because it is linked with several difficulties they face in their way to diagnosis. The question about satisfaction has been further broken down into different aspects of the process, such as satisfaction from the information or advice given after the diagnosis. In these questions a similar picture was revealed. For the majority of parents, the assessment didn’t satisfy their expectations and wasn’t enough informative and helpful. Our finding is in accordance with many foreign studies revealing similar experiences [16,22,24].

Parental thoughts and feelings which accompanied the diagnosis were mixed, including shock, helplessness, confusion, anger and bewilderment. The process of adaptation is slow and full of ‘setbacks’. The diagnosis creates worry about the future [15]. An unexpected finding in our study was that although the diagnosis helps parents to stop blaming themselves, more than half of the parents (60%) in our study continued to blame themselves after their child’s diagnosis.

According to Siklos and Kerns [16] parents whose child is diagnosed with a chronic disability experience a serious crisis like a serious illness. A positive finding is that the majority of parents in our study seek help immediately after the diagnosis which means that they want to provide support to their child as soon as possible. This has a positive impact on children’s later prognosis and better chances for higher functioning. Many studies highlight the importance of minimum delay and early intervention for children with ASD [9].

Most of the parents agreed with the positive consequences of the diagnosis, which helped them to understand and accept their child’s behavior, take the right decisions about him/her and finally adapt to the new life situation. However, the siblings of the ASD child did not have a better understanding of their sibling’s situation after the diagnosis. These themes are also discussed by the parents in the openended question as the direct parental quotes prove. The positive and negative reactions to the ASD diagnosis are discussed in detail by Mansell and Morris [15].

We now discuss the results elicited in the present study when we broke the sample into children diagnosed before 30 months of age and children diagnosed after 30 month, a classification also made in Barrie’s study [21]. Parents whose children received an early diagnosis took different actions and held different attitudes in comparison to parents whose children are diagnosed after 30 months. The benefits of early diagnosis, which have already listed in the literature review of the present paper, are evident in the experimental part of this study. Early diagnosis is a key concept in the process of implementing therapeutic interventions for ASD children.

Analysis of the qualitative data of the study identifies five central themes about the experiences of the diagnostic process. Benefits of diagnosis are not analysed in depth while barriers towards diagnosis seem to attract parent’s interest. The latter include: the distance from the diagnostic centers, the lack of knowledge and sensitivity from the professionals, the lack of specialists for interventions in small towns and the time they had to wait en route to diagnosis [20]. Parent’s instinct and persistence emerged as an important factor which helped them to obtain an earlier diagnosis and provide their child with the benefits from early intervention. Finally, parents in the present study do not skip to advise other parents to be persistent and defend their children’ rights. This trend is also reported by Barrie [21].

Limitations

The present study has several limitations and weaknesses. For privacy reasons, respondents were not asked to record the place they live. We are not sure which places of Greece are represented in the sample. Parents with ethnicity other than Greek are underrepresented (only 2.6%). Most of the parents (69%) were well educated and were internet savvy together with being affiliated to autism local associations. So the results cannot be generalized to parents of children from rural areas and those who are not affiliated to support groups and networks. Another limitation is that the study includes families who received the diagnosis many years ago in comparison to families which received a recent diagnosis. The perceptions of the ASD diagnosis of the first group may not be vivid and accurate.

Conclusion

The present research is the first Greek study presenting aspects of the diagnostic process of ASD with reference to pre- and post diagnostic issues and parental perceptions. Many of findings confirm international research on the impact of ASD diagnosis on the family, showing that irrespectively of country of origin and language speaking, parents experience similar stages, concerns and challenges on their way to diagnosis. In addition, our study has many similarities with Kourkoutas et al. [32] study in relation to parent’s feelings and reactions.

The basic conclusion is that there is an improvement in the age of ASD diagnosis but this improvement may not be generalized in other samples. However, it is an optimistic, positive trend. Greek parents are in a hurry to start interventions immediately after the diagnosis and this situation encompasses both advantages and dangers. Parent’s feelings and thoughts after the diagnosis are mixed, but most of them finally managed to adapt their family life to the needs of the ASD child. Moreover, the study underlines the important role which professionals play during the diagnostic process. Clinicians working with families of children in the autism spectrum should be sensitive and keep in mind the many stresses of having a child with autism [16]. Professional manner and support seem to be important determinants of parental satisfaction.

There is much to be done to ensure a flexible, multidisciplinary approach to ASD diagnosis with minimum delay and cost where parent’s concerns and accounts will be valued and reclaimed. Greek parents in the present study express their need for information about well-researched intervention strategies and training on issues related to ASD. Finally, the process of diagnosing and helping children with ASD remains a significant challenge for all those involved in their care and support. Autism local associations should expand their services to support every day parents and their children on the spectrum in the path of life [38-40].

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