During 2014 I ran a research project researching the effects the Autism diagnosis process had on parents within East & North Hertfordshire. The sample although small and population limited to pre school children; led to the development of services within the NHS and support groups being set up within the county to support the parents during this time.
Within my work as a Behavioural Specialist I often see the daily struggles parents endure when it comes to provison and support for their child and in the future I am hoping to run a follow up study looking at support for children as they reach adolescence and are looking towards secondry schools. Within my experience It would appear that those children who are deemed high functioning appear to suffer the most when it comes to specialist provision and support when needed.
Below I have a snap shot of my scientific justification, method and discussion;
*Service names have been deleted for privacy
**figures were correct at time of publication in 2014.
Given the impact that Autistic Spectrum Disorder has on the individual and the family, it is clear that early intervention is essential to ensure the best quality of life for all those affected. To implement early intervention, early diagnosis of ASD is crucial. Alongside delayed diagnosis, meaning a child misses out on interventions to support and develop, it also appears to have detrimental effect on the family network surrounding the individual. This issue being highlighted by Twoy, Connolly and Novak (2006) who showed that the time parents wait for a formal diagnosis of autism correlates with depression, isolation and spousal relationship problems. Renty and Roeyers (2005) investigated parent’s satisfaction with formal support and found a reoccurring theme in the problems with waiting so long for a diagnosis. Parents reported to have first become concerned with their child’s development and seeking help as young as 18 months but incredibly not receiving diagnosis until their child was at least 3, with some stating that their child was finally diagnosed at the age of 6. Parents reported frustration and anger at the time and reflected on the long delay of diagnosis as ‘a loss of valuable time that could not be recaptured’ (Renty and Roeyers, 2005, p.377).
Renty and Roeyers (2005) argue that delay in obtaining a diagnosis is often the first major influence on parental stress and family functioning. This research echoes Mansell and Morris’s (2004) earlier study, investigating parent’s reactions to the Autistic Spectrum diagnosis. Mansell and Morris’s (2004) results also focused on parent’s frustration at delays in diagnosis and highlighted the severe stress placed on the family and concurs with Siklos and Kern (2005) who suggested that a parents experience with the diagnostic process is impacted by the time they have had to wait for it and that parents also reported high levels of stress surrounding the diagnosis itself.
Another key factor present throughout previous research is the lack of professional and social support for families waiting for a diagnosis. Renty and Roeyers (2005) discussed this in their research and Twoy et al (2006) highlight the low level of support by health care providers and other forms of social support. Moh and Magiati (2013) revealed that contact with more professionals was also seen as a source of stress for parents. Boyd’s (2005) critical literature review presented correlations between mothers under great stress and lack of social support and also suggested that low levels of support are a powerful predictor of depression and anxiety in mothers of children with ASD (Boyd, 2005, p. 208). White and Hastings’s (2004) research looking directly at social support available for parents with children with intellectual disability showed that depression and anxiety levels were significantly higher than parents with typically developing children and that parents with a child with ASD report higher stress levels than those compared with typically developing and children with other forms of disability (White & Hastings, 2004). [SS1] When looking at the importance of early diagnosis in terms of access to treatment, it is clear that is a necessity for families. Without a formal diagnosis, families are unable to access specialised support, which is key to helping their child access support and to support the wellbeing of other family members.
Reflecting on the wealth of research into the diagnostic period it is clear that process of ASD diagnosis is a challenging and exasperating time for parents. In fact, in light of such stresses, Grayeer (2006) stated that ‘as a challenge to the family, autism must rank among the most stressful of childhood developmental disabilities’ (p.232). It can be clearly argued that early diagnosis is key to providing families and the individual with the appropriate support and advice to attain the best outcomesand intervention to avoid the family stresses and to reduce maternal and parental mental health illness. However, a limitation to all previous research is that parent experiences are reported retrospectively, sometimes in the case of Mansell and Morris (2004) between six to nine years after diagnosis, and was carried out before the changes in the DSM-V. Also, whilst research attempted to determine what can be learnt about the diagnostic process through reporting retrospectively it has not managed to focus on the anxieties and concerns and support available to parents who are currently in the process of attaining a diagnosis for their child. This is problematic as it makes it difficult to understand whether changes to services overtime, alongside better public and professional understanding of ASD, has led to improvements in diagnosis and access to support.
Currently[SS2] in East and North Hertfordshire once a parent identifies there may be an issue with their child’s development and they have discussed their concerns with their General Practioner, parents and their child will be referred to their local Child Development Centre, where they will be seen by a paediatrician who will assess the child using a Ruth Giffus Developmental check to assess the child’s cognitive ability along with social and communication skills and motor development. During this assessment the paediatrician also take a detailed history from the parents and discusses concerns. Once the assessment has taken place, if ASD is being questioned the child will then be referred to a number of different professionals and assessments, for example Speech and Language Therapy, Occupational Therapy and the Special Needs Health Visiting Team. Fundamentally, following this initial assessment the child will be placed on the Communication Disorders Assessment Clinic waiting list. The Communication Disorders Assessment Clinic is an appointment where both the child and all professionals involved are invited too, where a number of psychological tests, such as the Autistic Diagnostic Observational Schedule are undertaken , and a diagnosis of ASD is determined based upon the criteria described in the DSM V and the ICD -10.
If a child, once seen in their Child Development Centre appointment is clearly presenting as Autistic to the Paediatrician and the child’s family are accepting on their child’s atypical development, the child may be placed on the waiting list for a Shorter Diagnostic Clinic (an SDC). An SDC is reserved for children who are clearly presenting as Autistic and who would not benefit from a full assessment as intervention and support is needed right away. An SDC is concluded by reports from the paediatrician, a highly specialised Speech and Language Therapist and the Special Needs Health Visitor. These reports are compiled based upon observations of the child in their home, childcare and clinic settings. The main difference between the SDC and a full Assessment in the CDAC is the SDC clinics do not use an ADOS to conclude a diagnosis. These clinics, as not as detailed or needing as much professional input tend to be implemented sooner than a CDAC with an average waiting time of six months. In East and North Hertfordshire only a small amount of children will meet criteria for an SDC with only one or two clinics being held each month.
In East and North Hertfordshire there are almost 100 children on the Communication Disorders Assessment Clinic waiting list. There is a 12 – 18 month wait for a diagnostic assessment clinic appointment. During this waiting period, parents of children who are being assessed for ASD are referred to the Special Needs Health Visiting Team. The role of this team is to provide support and expert advice to parents during this process including information about ASD, signposting to support groups and specialist pre-schools, home visits to discuss concerns of families and to prepare for the Communication Disorders Clinic. The team also provide a specialist service working directly with the child to improve social and communication skills and to implement aids to support this. The team are involved with the Communication Disorders Assessment clinic, assessing the child through observations which are fed back into the clinic and also assisting with psychological assessments as part of diagnosis. After a diagnosis has been obtained, the team also facilitates access to interventions such as the Communication Disorders Team and other educational and health support.
This study aims to engage with parents who are currently being supported by XXXXXX in order to explore their thoughts and feelings towards the diagnostic process; what impact the process has on child and parent wellbeing and what support was available from xxxxxx and whether it was perceived to be helpful or unhelpful. The results of this study are intended to explore the experiences of parents and to highlight, for professionals, the positive aspects of support services, and areas that from parent perspectives, could be improved. The study is interested in providing up to date information, through the current experiences of families in the diagnostic phase or who have recently gone through it. This is to address the issue in previous research being out-dated in the current service context since much research is based on retrospective accounts. These are often after a considerable time period has passed since the child received the ASD diagnosis, thus making it difficult to apply the findings to enhance services from the current structure.
It is anticipated that the results may assist the XXXXX in Hertfordshire in service development, and will also be of interest to other professional groups involved in supporting children and families during this difficult process. It is hoped that the research will yield useful information for both parents and professionals about the diagnosis period[SS3] .
Participants and Recruitment
Parents of children awaiting assessment for an ASD diagnosis via the Hertfordshire Communications Disorders clinic/ those who had received a diagnostic within the last 6 months and were on the XXXXX caseload were invited to take part in the research by two special needs health visitors involved in service management. Thirty parents were identified who could have contributed to the study, with an aim of 8-12 agreeing to contribute. Eligible participants were sent an information[SS4] sheet outlining the research and asked to contact the student researcher if they would like more information or would like to take part. Parents were advised to carefully consider if they would like to contribute to the study and were advised that informed consent would be sought before any data is collected.
Parents with little or non English language skills were excluded from the study as were those who were receiving psychological support so as to not add any additional strain. The inclusion criteria stated that only families on Communication Disorders Assessment Clinic waiting list, or those with a child who had received diagnosis within the past six months could be recruited, alongside only parents with good written and verbal English language skills.
Of those contacted 12 agreed to take part, yielding a response rate of 40%40 %. . 11 of the parents who took part had a child who had recently received a diagnosis of Autism within the last 3 months and one parent had a child currently on the Communication Disorders Assessment waiting list.
This study has contributed to qualitative research reviewing the impact of the ASD diagnosis process on family functioning and the families’ experiences. More specifically, the study explores the thoughts and feelings of parents whilst awaiting a diagnosis of ASD and identifies what support is available to families at this crucial period. This study aimed to engage with parents who are currently being supported by XXXXXX in order to explore their thoughts and feelings towards the diagnostic process; asking what impact the process has on child and parent wellbeing and what support was available from the XXXXX and whether it was perceived to be helpful or unhelpful. The study used a recent sampling direct from an NHS service case load, with participants completing a semi structured interview exploring their experiences of the ASD diagnosis process. The results from this study have addressed these aims providing interesting discussion points and providing important information for service development which will be expanded upon below.
Parents experiences of diagnosis:
It appeared from the results from the data that parents had a negative thought process in relation to the diagnosis process. Parents described the process as ‘hard’ and a ‘negative time’ in their lives. From the results given it could be suggested that this negative feeling stems from the parents initial Child Development Centre assessment and their perception of professionals. Parents described the initial assessment as overwhelming and unsympathetic. It appears that this assessment and the parents perception of professionals sets the scene for the diagnostic process and if the professionals are perceived as unsympathetic or blunt in their assessments then this initial experience flows into negative thoughts and feeling toward the entire diagnostic process.
Another factor which could be argued is responsible for parents negative views on the diagnostic process is their lack of confidence in being able to contact the relevant health professional for any future needs for their child. Interestingly all 12 of the parents interviewed claimed they had no confidence in contacting the relevant professional, which could be argued is a reflection of the interaction they received during the diagnostic process. It was highlighted in the research that the experience of multi-agency working was a key theme, with the majority of parents reflecting on their experience and explaining how poor communication between professionals and how interaction from professionals was ‘fleeting’. It could be suggested that this lack of confidence stems from the parents experience of multi-agency working which in turn, adds to reasons for parents negative thoughts and feelings towards the diagnostic process.
These findings add new elements to previous research by highlighting parent’s thoughts and feelings towards professionals and the multi-agency working, something that has not been researched before. Previous research has highlighted the impact of diagnosis and support whereas this research has added the thoughts and feelings which highlights more concerns for those researching the impact of this diagnostic process.
The findings from this study concurs with previous research investigating the impact of the diagnostic process. Parents reported mental health issues such as depression and anxiety which concurs directly with Ghaziuddin, 2005 whose research suggested parents with a child with ASD are most at risk of developing depression and anxiety. Parents also reported relationship break downs and family break ups, highlighting the huge impact the diagnostic process is having upon parent and family wellbeing.
Unsurprisingly, from the data collected it appeared that the long wait for diagnosis could be the reason for this adverse effect of the diagnosis process. 10 out of 12 parents interviewed protested the wait for obtaining an ASD diagnosis for their child had been far too long. From the sample the average wait for diagnosis was 14 months with one parent waiting almost 2 years for a diagnosis for their child. Parents explained this wait as a stressful time and also that the experience fed into their self-esteem, for example ‘being constantly fobbed off’ and ‘I felt under constant observation…my parenting was in question’. These experiences and how they relate to an individual’s self-esteem could be argued to be adding to factors causing anxiety and depression parents are experiencing, along with the long wait for diagnosis.
These finding relating to the unfavourable impact the diagnosis process appears to be having upon families and the suggested reasoning of the long waiting list, concurs with previous research by Twoy, Connolly and Novak (2006); Renty and Roeyers (2005) and Mansell and Morris (2004), all of whom argue that the long wait for a diagnosis of ASD causes increased frustration, anxiety, depression and family breakdowns amongst parents.
It is crucial that the waiting list, which currently stands at approximately 12 months is addressed and ideas and pathways are developed to bring this wait down. Currently the NICE guidelines argue that diagnostic assessment should be started within three months of referral (NICE, 2011) and interestingly also highlight the need for a case co coordinator to act as a single point of contact for parents, . sSomething that parents in this study all expressed a wish for, but were clearly without.
Interestingly, two parents described the impact of diagnosis, along with their thoughts and feelings towards it, in a very different perspective to all the other parents, for example , describing their perception of professionals as positive and in relation the topic, the process was also described as ‘fine’ and the wait as ‘fine….it gave us time to understand’. What is interesting about this difference in results is the parents mentioned are male. These distinctive views from male participants was also echoed when discussing their child’s initial Child Development Centre appointment and first meeting with a paediatrician with all three male participants describing it positively, for example; ‘she was good as gold…we’d rate them highly’, ‘brilliant, proactive, patient’, in comparison to female participants who reported a more negative first appointment.
Previous research, such as, Koegel et al, (1992) and Hastings et al, (2005) both suggest that the diagnostic process has a detrimental effect on mothers however there seems to be very little research investigating the impact on fathers alone. The results from this study add new material to previous research, asking further questions relating to gender differences when reflecting on the diagnosis process. Perhaps fathers view the process in a different manner than mothers do, perhaps as they are not experiencing the psychological distress that mothers do, they see the process as less wearing?
Parental support was seen unanimously by the study sample as essential throughout diagnosis. The level of support received had a direct effect upon parent’s experience of the diagnostic process, with low levels of support proving detrimental to a parent’s experience. The Special Needs Health Visiting Team appeared to be parents first experience of support during the diagnostic process, and received positive feedback regarding the type of support that was given, for example, signposting, benefit information as well as social support and ‘normalising’ the situation. Parents described the XXXXX as easily accessible by telephone and helpful in answering questions, although rather fleeting in face to face engagement. However it is important to highlight that the Special Needs Health Visitors initial meeting with families is not until 10 – 12 weeks after parent’s initial Child Development Centre appointment and first discussion of ASD. This means that parents are experiencing a three month period between an initial assessment and first contact with their Special Needs Health Visitor with no support or information.
The importance for parental support is clearly highlighted with those parents who obtained a diagnosis through a Shorter Diagnosis Clinic, so waited the least amount of time still reported the same negative experiences as those who waited up to two years, showing the need for parental support whilst they await a diagnosis regardless of how soon their child will be seen in clinic is fundamental.
The results concur with previous research such as, Renty and Roeyers (2005), Twoy et al (2006) and Boyd (2005) who argue that lack of social support is a predicator for stress, depression and anxiety in parents with a child with ASD. It is important that this gap in support it addressed within service context as suggested, by implementing an information pack to be discussed at point of initial appointment, to ensure the service is acting within the demands on the NICE guidelines for Autism diagnosis in Children and Young People, who state that ‘Good communication between health care professionals and families is essential ‘(NICE, 2011, P.6). It is interesting to compare the experience of communication between professionals and parents within this sample size and the National Autistic Society guidelines (NAS, 2003) along with the NICE guidelines as it could be suggested that the service is not acting within the guidelines, an issue which should be addressed immediately to ensure parents receive a more positive diagnostic experience.
Implications for Service Development:
The research has presented some key problematic areas for the service as well as displaying service strengths. By addressing the key themes and suggestions reported, service development can ensure problem areas are addressed and parent’s thoughts and feelings towards the diagnostic process can be reported as a more positive and less detrimental experience. For example, by implementing a case coordinator as suggested within the NICE guidelines and as suggested by the sample, the service would alter parent’s experience of multi-agency working and therefore alter perceptions of diagnosis.
Support for parents experiencing the diagnostic process is essential and it is paramount the recess between the initial Child Development Assessment and the introductory meeting between parent and XXXXX is bridged with signposting and information on ASD.
Crucially the Communication Disorders Assessment Clinic Waiting List length needs to be explored. As argued, the NICE guidelines suggest the assessment should begin within three months of referral, whereas within this service the wait is around 12 months with parents waiting up to as long as 24 months. This wait has been shown to be directly detrimental to parent’s health, mental wellbeing and family relationships, and therefore other pathways need to be reinforced to reduce the waiting list to provide parents with a less stressful diagnosis experience.
Study Strengths and Limitations
One of the main strengths of this study is the recent sampling it used. Previous research has used samples of parents who reflect upon their experiences retrospectively, for example, up to nine years after diagnosis. This study used a recent sampling with parents whose child received a diagnosis up to three months prior (M = 6 weeks) meaning parents thoughts and feelings were very current and reliable. The study also recruited through an NHS Service, presenting a current and focused sample resulting in areas of service development being able to be discussed and addressed. The study presents clear evidence and concise themes to explore parent’s thoughts and feelings toward the diagnostic process, with results concurring with previous research whilst including additional findings to explain previous findings in more detail, such as themes such as perceptions of professionals and experience of multi-agency working. The study has strengths in the relevance of its content, with the recent changes of the DSM V and the way Autism is being diagnosed and by sampling a service that has previously not been researched, resulting in promoting positives within the service and discussing areas of improvement.
A key limitation to the study is in regards to the response rate. A larger sample would have perhaps presented more variation and more data to explore. It is interesting to comment that only one parent yet to receive a diagnosis would take part in the study suggesting parent’s nervousness and perhaps that they have lost faith in talking to professionals? Another problematic area for the study is the sampling. The sample was recruited via self-selection by the XXXXX, so it could be argued that bias sampling took place with health visitors recruiting parents who they felt would represent their service well. Also it is worth highlighting that the student researcher also had a professional relationship with certain parents, again which could be argued as bias responding, with parents taking part who perhaps represented the XXXXX unfairly as had good working relationships with them? Nonetheless, results still concur with previous finding suggesting the sample recruited was representative of the population.