Autism Spectrum Condition (ASC) – An Evaluation of a Diagnostic Assessment Service

This service evaluation aimed to explore the views of parents whose children had been assessed at a specialist diagnostic service for Autism Spectrum Disorder (ASD). A key priority was to understand which aspects of the assessment process could be improved and to evaluate whether the service-model is suitable for all families.

 

An online survey was completed by parents (N = 9) of children who received a diagnosis of ASD at the host site before their fifth birthday. Data were analysed using thematic analysis.

 

There were five main themes noted in the data: 1) Feeling supported and listened to during the assessment, 2) Suitability of the nursery setting, 3) Concern about getting the whole picture, 4) The diagnosis was a bit of a blur, 5) Lack of post-diagnostic support. The majority of parents had positive views about the assessment taking place in a nursery setting and welcomed the support and warmth provided by clinicians. However, some said they had not known what to expect beforehand and that their children found aspects of the process difficult (such as the noisy environment and the number of people involved). The primary concern for some parents was that their children behaved differently in the nursery setting and they were worried about the potential for a diagnosis to be made incorrectly or for one being missed. The importance of getting a whole picture was voiced by many parents and some expressed they would have rather their child had been assessed at home. The feedback session was overwhelming for a lot of parents and many were dissatisfied with the lack of post-diagnostic support.

 

Given the sample was small and unrepresentative of the wider population, the following recommendations are offered tentatively and should be treated with caution:

 

⦁ Consider offering parents the option of a home assessment; as an alternative to one or both of the hospital appointments. 

⦁ Consider creating a written resource to help people know what to expect from the assessment. Explain the comprehensive steps involved in reaching a diagnostic conclusion and how a whole picture will be obtained.

⦁ Consider revising the way in which the diagnosis is explained to parents with a maximum of two professionals present in the feedback session and with time allowed for parents to process the news of the diagnostic outcome before receiving further information. 

⦁ If feasible, a written summary of how the diagnosis was reached could be provided to parents at the feedback session to aid retention of the information discussed.

⦁ Given participants’ over-whelming dissatisfaction with the lack of post-diagnostic support, it is hoped that commissioners will consider allocating the requisite resource to permit the provision of support post-diagnosis. Even if the support was time-limited (such as a parents’ workshop), it would help send the message to parents that they are not alone. 

⦁ An additional service evaluation could be commissioned to seek the views of parents whose children did not receive a diagnosis. 

 

 

Research (e.g. Lord, 1995; Moore & Goodson, 2003) has provided evidence that the diagnosis of ASD in childhood is reliable and stable, even for children diagnosed as young as two years old. This has led to the opening of early diagnostic services for children with suspected ASD nationwide, as early diagnosis can lead to better support options for children and their parents (Moore & Goodson, 2003). However, research has also suggested that many parents find the diagnostic process frustrating, stressful and unsatisfactory (Mansell & Morris, 2004).

 

Service Description and Rationale for this Evaluation

This service evaluation concerns a specialist assessment service located within a regional ASD diagnostic pathway for children under the age of five. Children and their family/carers attend hospital for an initial appointment with a paediatrician and then have two subsequent appointments (one week apart) with other members of the multidisciplinary team. These appointments take place in a large room that has been designed to appear like a typical nursery. The setting provides the opportunity for different clinicians to observe children during structured and unstructured play; to gather information from carers/parents and to conduct assessments using standardised tools, such as the Autism Diagnostic and Observation Schedule (Lord et al., 2000). 

 

The assessment information gathered from the different professionals is then analysed and synthesised. A team discussion then takes place to consider whether a diagnosis of ASD is indicated. Subsequently, parents/carers are invited to attend a feedback session in which members of the multi-disciplinary team share their diagnostic conclusions and discuss support options.   

 

The advantage of the current model is that it is comprehensive, and therefore, increases confidence in the accuracy of the assessment. However, given the difficulties commonly associated with ASD (e.g. difficulties with social communication and interaction; sensory hyper-sensitivities), the clinicians working on the pathway have questioned the appropriateness of the nursery setting for some children as it involves a novel social situation in a busy hospital. The ASD team have therefore begun exploring the potential of conducting home assessments for children with more severe difficulties.

 

Given the questions raised over the acceptability of the nursery assessments and the consideration of alternative models, this evaluation was commissioned with the aim of better understanding parents’ opinions of the nursery assessment. It was intended that the data would inform service-development. The questions this evaluation hoped to answer were: 

 

⦁ What are parents’ opinions of the current assessment process?   

⦁ Is it right for everybody?

⦁ Which aspects could be improved?

 

The methodology was chosen because it provided a balance between rigour and feasibility. Given the aim was to explore parents’ opinions, a qualitative methodology was selected. 

 

The evaluation was commissioned and supervised by a Principal Clinical Psychologist on the ASD pathway. Approval for commencing the project was obtained from the Speciality Lead within the children and families care group. The project was also approved by a regional ASD steering group.

 

The population comprised parents of all children who had been assessed via the under 5 diagnostic-pathway at the hospital. These assessments are comprehensive and, therefore, only four children per month are assessed.  To help ensure parents/carers were able to recall their experiences accurately, it was agreed that only parents who had a child assessed recently would be invited to take part. Therefore, the eligible population comprised the parents of the 28 children assessed between September 2017 and March 2018. The administration team identified these parents from service records. There were no additional inclusion or exclusion criteria specified. All parents of the 28 children were contacted via telephone and invited to take part. The purpose of the evaluation was explained and any questions answered. Those who consented to participate completed an online survey. The survey was anonymous to protect confidentiality and to encourage parents to be honest about their views. All data were stored securely. 

 

There were nine parents who took part in the evaluation (a 32.1% recruitment rate). Their ages ranged from 28 – 41 (median = 36) and eight out of nine were female. Each participant was a parent of a separate child. Children’s ages (at the time of the survey) ranged from four – six (median = 5) and six out of the nine children were male (66.6%). This was lower than the proportion of parents in the eligible population who had a male child (75%). The sample also comprised a higher proportion of parents whose children received a diagnosis of ASD (100%, compared with 82.1% in the eligible population). However, the median age of the children in the sample was identical to that of the eligible population. Demographic data were not available for the 67.9% of the eligible parents who declined to take part. 

 

  An online survey was devised in collaboration with clinical psychologists working into the ASD service. Participants were asked fourteen, open-ended questions about their opinion of the assessment process. Participants wrote their answers in free text fields which did not place any restrictions on the comprehensiveness of their answers. 

 

Thematic analysis (TA) was used to analyse the data. TA refers broadly to a method for the identification, analysis, and description of themes (patterns) within the data (Braun & Clarke, 2006). It is a flexible approach that can be used by researchers from different epistemological and ontological positions. In this case, a theoretical position was taken that was more in keeping with the essentialist/realist approach than that of a constructionist perspective. This allowed motivations, experiences, and meanings to be described in a straightforward way. The analysis considered themes across the entire data set and, although focussed primarily on the semantic content of the data, the analysis cautiously ventured into the latent level in places, exploring the underlying conceptualisations of participants (where it seemed important to do so). Themes were identified not solely on the basis of prevalence within the data set, but by the degree to which they were felt to touch something of relevance to the research questions. Data were analysed in accordance with the six-stage process described by Braun and Clarke (2006).

 

Parents’ views were characterised by five main themes. A thematic map representing these themes, together with subthemes, is presented in Appendix C. 

 

 

The majority of participants commented on positive attributes of the professionals involved in the assessment process. Communication was a particular strength and participants felt heard:

 

“I thought the questions she asked allowed me to get my views across on my child’s problems and felt I was listened to.” (Participant 1)

 

“… they were very understanding and listened to all concerns.” (Participant 2)

 

Participants also referred to the warmth and friendliness of staff. This helped some participants feel supported through the assessment process:

 

“The professionals were very warming and friendly and helped put us at ease and make the experience a lot easier to go through.” (Participant 3)

 

“Everyone was very friendly. Our SALT especially tried to reassure us and make us feel less anxious…” (Participant 4)

 

 

Commenting on the suitability of the nursery setting for their child was a common theme, with eight out of the nine participants expressing a view. Subthemes were positive aspects; coping with the social environment; not knowing what to expect and doing whatever was needed.

 

Positive aspects. The majority of participants voiced a positive opinion of the nursery setting: 

 

“Overall I think the experience was good. It was carried out well and the more relaxed atmosphere made it an easier experience.” (Participant 3) 

 

“I thought it was excellent” (Participant 5) 

 

“It was fantastic” (Participant 2)

 

Coping with the social-environment.

 

For some parents, the nursery setting offered a unique opportunity to observe their children in a social situation, but it was also an anxiety-provoking experience: 

 

It was good to see how he is in other places as we only see him at home and rarely go places where he spends time with other children. My wife was really anxious about how he would cope in that environment but it wasn’t as bad as we thought. (Participant 6)

 

Participant 1 described how the nursery environment was ill-suited to her daughter and acknowledged feeling embarrassed about being unable to comfort her:

 

It was the wrong environment for my child to much going on and to noisy. Even waiting in reception was awful as I was embarrassed as my child was getting upset and I couldn’t calm her down… 

 

Similarly, others expressed their dissatisfaction with the social-environment:

 

“Having all the adults and parents in one tiny room was a lot” (Participant 7)

 

“It was a bit overwhelming with there being so many professionals…” (Participant 8)

 

Also speaking to the suitability of the nursery setting, a number of parents referred to their children having difficulty accepting the structure of the assessment.

 

…it was a bit too loud for him and he had a problem when staff say ‘we’re gonna put these away, we’re gonna do some painting’ etc. but he didn’t really want to do what they wanted to do…(Participant 8)

 

Not knowing what to expect.

 

Participants were all asked whether they knew what to expect from the nursery assessment, so it is unsurprising they all commented on it. However, it was surprising that the majority expressed they did not have a good idea about what to expect. Dissatisfied with the information provided by the service, one participant used social media to try and find out more beforehand:

 

There’s a site on Facebook for parents in the area who are going through it so that parents can support each other so I was able to get a bit of a heads up from the ladies to see what type of thing to expect but from the pathway team themselves I was just told you’re going to come on this day, come on this day and eat and then decision time the week after and that was all I was told (Participant 8)

 

For one parent, knowing about the structure prior to the nursery would have made it easier for her daughter: 

 

Just the activities and stuff they would do would have been helpful to know as my child finds it easier when she knows what to expect. She hates singalong songs so would have been good to warn her they were coming and that she would have to join in (Participant 1)

 

 

Although the nursery assessment (and the uncertainty surrounding it) appears to have been difficult for some parents/children, others implied the outcome was more important for them than the process:  

 

“Didnt mind at all. Whatever was needed for an accurate diagnosis” (Participant 2)

 

“We didn’t know what to expect but was happy to do whatever was needed for our son to access the support he needs.” (Participant 6)

 

 

Related to the importance of the outcome, concern was raised about the assessment not fully-capturing children’s typical behaviour. For example, Participant 9 said the nursery setting, “…didn’t allow to see the whole picture of son’s difficulties as it was a new place, new expectations”. Participant 1 also referred specifically to professionals not seeing the “whole picture” and this concern was echoed in the comments of many other parents. This therefore represents a prominent theme that speaks to parents’ fears about the suitability of the nursery setting. 

 

Concern about a false-positive.

 

For Participant 1, it seems the risk was that the nursery setting could have resulted in a diagnosis being made incorrectly (a false-positive):

 

…to many noises and distractions for her. Also she gets on better with kids that make an effort to play with her but because all the kids there struggled with that kind of thing everyone just did there own thing and played by themselves so I was worried staff would see her at her worst and she didn’t get chance to show how she is at home or at school. 

 

Participant 3 thought the risk of a false –positive was mitigated by there being two separate appointments. She said her daughter probably attended the second session with more confidence which was beneficial for the professionals to see the “…side of her which was not reflected on her first visit”. 

 

 

Participant 8 also emphasised the importance of her child feeling comfortable in the environment to give an accurate picture. However, in contrast to Participant 3, she felt the assessment was not long enough and that co-morbid difficulties might have been missed (a false-negative): 

 

I think for it to be a more throough investigation of the child maybe a little bit longer would be beneficial as the child’s going to get more comfortable in that setting and come out of himself that little bit more and might display a bit more. We got the diagnosis but I still worry there could be ADHD there as well that went undetected.”

 

 

A prominent sub-theme was the perception that clinicians did not spend enough time observing the children; perhaps subordinating observation to discussion with parents:

 

“A lot of questions based on my opinion and school reports etc, rather than actual observation…” (Participant 9)

 

“…at some times I felt maybe too much time was focused on us talking to them than them observing the children.” (Participant 3)

 

However, Participant 8 implied she had initially underestimated the amount of observation that took place:

 

“I found it useful to see all the things that they noticed that I thought perhaps they didn’t see because they didn’t necessarily have their eyes up at that time but they still saw EVERYTHING!!”

 

 

Another prominent sub-theme was the desire expressed by some parents for professionals to have observed their child in their home environment in order to get a whole picture:

 

“…Children need to be seen in their home environment as well (as they do in other NHS Trusts).” (Participant 4) 

 

 “…I was concerned he wouldn’t get the diagnosis if he needed one because at home he is a lot more hectic and lively and loud and he just reverted into himself in this other setting.”

(Participant 8)

 

“I think it would have been beneficial to be seen in the home setting also, but realise this is difficult.” (Participant 5)

 

When asked how the assessment could be improved, participant 7 also suggested a home observation might be useful but added, “… I guess that wouldn’t work as you needed to see how he gets on with other children”. Therefore, for some, substituting the nursery observation for a home observation might still present a risk of not acquiring a complete picture. Present in many of the comments above is the suggestion of the home observation being an addition to (rather than instead of) the nursery observation. Participant 1 suggested one of the nursery appointments could have been substituted for a home observation:

 

I didn’t mind coming back at all but didn’t know what else they were going to find – my child was exactly the same as she was on the first week. Would have preferred to be seen somewhere else (like at home) so staff could get more of an overall picture.

 

 

Some parents commented positively on the way the diagnosis was communicated during the feedback session. For example, Participant 3 valued the professionals including “positive comments rather than all negative”. However, over half of participants described feeling over-whelmed by the feedback session and not retaining much of the information that was conveyed. Perhaps Participant 6 captured the essence of the experience when he described it as a “bit of a blur”.  It seems likely that the number of professionals that were present during the discussion contributed to the pressure:

 

I found it quite intimidating being sat there with three members of staff in front of you- it felt like an interview. It’s a lot to take in as obviously they tell you everything and then give you the conclusion and then you walk out and feel like you’ve got no idea what they said in there… (Participant 8)

 

However, Participant 1 described how the comprehensiveness of the feedback session helped increase her confidence in it being accurate:

 

…Hearing how much detail everyone had gone into to assess my child and how knowledgeable they all were really helped with my fears about it being wrong and them not seeing the whole picture. Now it’s sunk in I do think it was the right call. 

 

 

There were only two participants who felt satisfied with the support they received following the diagnosis. The other seven expressed disappointment in the lack of support:

Sent on our way. Several participants communicated a sense of abandonment after the diagnosis:

 

“Once you get the diagnosis you feel like you get left. You’ve had the diagnosis and thats end of…” (Participant 7)

 

 “Received a information pack …and sent on our way.” (Participant 9) 

 

“… we were sent away with an information pack to join private support networks and charities. This is not helpful…(Participant 4)

 

 

Several parents expressed the lack of post-diagnostic support from the service meant they were still struggling to get their child the right support. Participant 7 said, “[It] Feels like Im hitting my head against the brick wall and that noones listening”. For Participant 3, being sent on her way seems to have solidified her view of being alone, fighting an ongoing battle to get the support she needs:

 

Getting to where we are today as been a constant battle. A years waiting list to even get an assessment and then it feels as though once a diagnosis is given you are forgotten about and the battle never ends. We are constantly fighting to get the support needed where this I feel should be provided instantly and always be available to access once a diagnosis is provided. 

 

 

This service evaluation sought to answer the following questions:

 

⦁ What are parents’ opinions of the current assessment process?   

⦁ Is it right for everybody?

⦁ Which aspects could be improved?

 

A number of respondents had positive views about the assessment process taking place in a nursery setting and many felt supported and listened to by the clinicians who facilitated the assessments. However, it seemed the nursery setting was not universally-suited to all families, that is, it was not right for everybody.

 

 Some parents expressed that the social environment was ill-suited to their child and reflected it would have been helpful to have known what to expect before-hand. Some children were reported to have behaved differently in the nursery setting compared to how they behaved at home. This caused concern about whether this could have led to a diagnosis being made incorrectly or one being missed. The importance of getting a whole picture was voiced by many parents and some were perturbed by their perception of a lack of clinical observation. Some parents expressed they would have rather their child had been assessed at home. However, parents expressed they were prepared to do “whatever was needed” and that the accuracy of the diagnosis was the paramount concern. Therefore, some concern about the whole picture might still have remained if children were assessed exclusively at home.

 

The feedback session was overwhelming for a lot of parents and impacted information-retention. However, one parent expressed the comprehensiveness of the session increased her confidence in the decision.

 

The lack of post-diagnostic support provided by the service was a big disappointment for many parents. Some felt they were forgotten about after the assessment; left fighting an ongoing battle to get their child the support he/she needs. 

In summary, although most parents made positive comments about the nursery assessment, it appears it was not right for everyone surveyed. Many areas of dissatisfaction described by the participants (e.g. feeling over-whelmed; the lack of post-diagnostic support) are in line with previous research that has examined parental experiences of ASD diagnostic assessments (e.g. Braiden, Bothwell, & Duffy, 2010). To the best of the author’s knowledge, parental concern about clinicians attaining a whole picture is a novel finding. However, it is worth noting that the National Autism Plan for Children (National Autistic Society, 2003) recommends that diagnostic observations take place in more than one setting. 

 

It is probable that the views expressed in this evaluation do not represent the population of parents who access the service. The sample size was small and there were demographic differences between the sample and the wider population. Eight out of nine parents were female, and the proportion who had a male child was lower than that of the eligible population. Crucially, all parents had a child who received a diagnosis of ASD at the conclusion of the assessment. Their views might therefore be very different to those parents whose children did not receive a diagnosis. Furthermore, it is possible that the sample was biased because of the requirement to visit a website and provide written opinions. Perhaps this inadvertently excluded parents who were less technologically-competent, or less articulate. It might have also introduced a socio-economic bias as there might have been people who were eligible to take part but who did not possess the means to access the internet. 

Given the methodology, this evaluation was undoubtedly influenced by my personal background, experiences and beliefs. This was exacerbated by my previous experience of working into the service I was evaluating. I noticed this introduced two opposing pulls. The first was that I was drawn more to positive comments, perhaps due to a hidden motivation to want to show the service in its best light. Conversely, the second was a desire to give a voice to the families I worked with who expressed frustrations with aspects of their care to me personally (such as the lack of post-diagnostic support). It is possible this drew me to comments that resonated with this during the analysis. These biases were somewhat mitigated by maintaining a reflexive stance throughout the evaluation and by following a structured approach to data collection and analysis (specified a priori). Although it was not feasible in the current evaluation, the analysis could have been strengthened by having the data coded independently and compared to assess inter-rater reliability (Armstrong, Gosling, Weinman, & Marteau, 1997).  

There were some common themes that might have implications for service delivery and development. However, given the limitations, the following recommendations are offered tentatively and should be treated with caution.

 

 

⦁ Consider offering parents the option of a home assessment; as an alternative to one or both of the nursery appointments. This is in line with the National Autism Plan for Children (National Autistic Society, 2003).

 

⦁ Consider creating a written resource to help people know what to expect from the assessment. Explain the comprehensive steps involved in reaching a diagnostic conclusion and how a whole picture will be obtained.

 

⦁ In line with guidance from the National Institute of Clinical Excellence (2011) and the National Autistic Society (2003), the feedback appointment could be conducted by the family’s appointed case coordinator/key-worker in the autism team (with perhaps one additional professional present). Allow parents some time to process the news of the diagnostic outcome before providing further information. One professional could also offer to take written notes of the key points discussed (to aid retention of the information).

 

⦁ Given participants’ over-whelming dissatisfaction with the lack of post-diagnostic support, it is hoped that commissioners will consider allocating the requisite resource to the service to permit the provision of some type of support post-diagnosis. Even if the support was time-limited (such as a parents’ workshop), it would help send the message that parents are not alone after the diagnosis. 

 

⦁ Finally, it is recommended that another service-evaluation is commissioned to survey the views of participants whose children did not receive a diagnosis after the nursery assessment, to ensure their needs are being met. 

 

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Braiden, H.-J., Bothwell, J., & Duffy, J. (2010). Parents’ experience of the diagnostic process for Autistic Spectrum Disorders. Child Care in Practice, 16, 377-389. doi:http://dx.doi.org/10.1080/13575279.2010.498415

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative research in psychology, 3, 77-101. doi:http://dx.doi.org/10.1191/1478088706qp063oa

Lord, C. (1995). Follow-up of two-year-olds referred for possible autism. J Child Psychol Psychiatry, 36, 1365-1382. doi: https://dx.doi.org/10.1111/j.1469-7610.1995.tb01669.x

Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Leventhal, B. L., DiLavore, P. C., . . . Rutter, M. (2000). The Autism Diagnostic Observation Schedule—Generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30, 205-223. doi:http://dx.doi.org/10.1023/a:1005592401947

Mansell, W., & Morris, K. (2004). A survey of parents’ reactions to the diagnosis of an autistic spectrum disorder by a local service: Access to information and use of services. Autism, 8, 387-407. doi:https://dx.doi.org/10.1177/1362361304045213

Moore, V., & Goodson, S. (2003). How well does early diagnosis of autism stand the test of time?: Follow-up study of children assessed for autism at age 2 and development of an early diagnostic service. Autism, 7, 47-63. doi:http://dx.doi.org/10.1177/1362361303007001005

National Autistic Society. (2003). National autism plan for children: Plan for the identification, assessment, diagnosis and access to early interventions for pre-school and primary school aged children with autism spectrum disorders (ASD). Retrieved from http://www.nas.org.uk

National Institute for Health and Care Excellence. (2011). Autism spectrum disorder in under 19s: recognition, referral and diagnosis (CG128).   Retrieved from  http://www.nice.org.uk/guidance/cg128