“You’ve actually got two patients, you haven’t got one”: parent-informed criteria for evaluating the autism assessment process

Abstract

Purpose

Parents whose children have undergone an autism assessment often describe the process as extremely stressful. This affects how parents engage with services post-diagnosis, meaning less likelihood of using subsequent service support despite struggling to cope. Since parents already report many barriers to accessing services, e.g. long waiting lists, lack of co-ordination and limited resources (Sapiets et al. 2023), negative experiences during assessment should not pose another potential barrier to engagement. This study aimed to address how families’ needs can be better met during the assessment process.

Design/methodology/approach

In this qualitative study, the author conducted semi-structured interviews with 11 parents whose child had undergone an autism assessment in the last five years. Thematic analysis determined key themes.

Findings

The six themes were: clarity and communication, access to support and resources, aftercare, recognition of parent concerns, personalisation of the assessment process and concerns around the use of personal protective equipment/online assessments. These themes led to criteria to assess the quality of autism assessment services in line with parent perspectives.

Practical implications

These parent-informed criteria could facilitate the consideration of parents’ views into service evaluations of autism assessment services across the UK.

Originality/value

Previous research indicates that the autism assessment experience is often extremely stressful and overwhelming for families (Crane et al., 2016). Despite this, guidance to improve autism services rarely prioritises the opinions and experiences of service-users and their families. The criteria presented here were derived from themes identified by interviewing parents on their experiences of the autism assessment process, thus shifting the focus onto service-users.

Citation

Burden, D.G. (2024), "“You’ve actually got two patients, you haven’t got one”: parent-informed criteria for evaluating the autism assessment process", Advances in Autism, Vol. 10 No. 1, pp. 12-24. https://doi.org/10.1108/AIA-02-2023-0008

Introduction

Around 1% of the UK (United Kingdom) population are autistic (Baron-Cohen et al., 2009). The presentation of autistic traits can vary across individuals but commonly includes differences in social communication and social behaviour patterns (Hodges et al., 2020). Individual life outcomes are highly variable: research suggests that autistic people face higher levels of unemployment (López and Keenan, 2014), greater prevalence of mental health problems (Lai et al., 2019) and a lower average quality of life compared to non-autistic people (Ayres et al., 2018). However, positive life outcomes for autistic people are more likely for those who have diagnostic assessment earlier in life (Oredipe et al., 2022) and who engage with support services earlier during childhood (Elder et al., 2017; Hosozawa et al., 2021; Klin et al., 2015). Hence, positive outcomes for autistic children depend on both early diagnosis and a strong partnership between parents and their local autism services.

For most parents, their first encounter with autism services will be in their child’s assessment, so these experiences will likely affect their subsequent views of and engagement with services. Parents commonly report barriers to accessing autism support, with negative consequences for the whole family (Challenging Behaviour Foundation, 2020), which may be compounded by negative assessment experiences. Legg and Tickle (2019) identified several potential needs for parents during their child’s assessment: emotional, informational and relational. However, parents often seem dissatisfied with all areas of the autism assessment process (Makino et al., 2021). According to Howlin and Moore (1997), the way in which information is presented during these assessments has long-lasting effects on parents’ attitudes towards autism, their levels of coping and acceptance, and their view on services and professionals. Dissatisfaction at assessment can therefore have an enduring negative impact on parents and children.

Receiving a diagnosis of any kind for one’s child brings stress, likely exacerbated by a negative assessment process. In a recent UK study involving over 1,000 parents of autistic children, Crane et al. (2016) found around 56% of parents rated their child’s experience of the assessment process as “very stressful”. Greater parental stress reduces the resources available to cope, provide support and be a successful advocate for a child with additional needs (Meadan et al., 2010). Further, Clauser et al. (2021) found that behavioural outcomes in autistic children tend to be poorer where parental stress is higher. In short, parental dissatisfaction with the autism assessment process has a negative impact on parents and children alike, with potential knock-on effects on both engagement with services in the present and subsequent quality of life for families.

However, improving parent satisfaction with the assessment process is not straightforward. Firstly, findings on this topic often seem conflicting. For example, Makino et al. (2021) highlighted studies where parents perceived the autism assessment process as too lengthy and overly comprehensive (Mulligan et al., 2012), while a study in Vietnam suggested that assessments were seen as too short and superficial (Ha et al., 2017). Further, a review by Hayes et al. (2018) highlights how clinical guidelines themselves can be complex and contradictory, as guidance is often inconsistent from one governing body to another (e.g. on presentation of symptoms, impact of stressors on symptoms, and interpretation of symptoms in differing cultural contexts), leading to disagreement amongst professionals about how best to support families.

This study builds upon Crane et al.’s (2016) research surveying over 1,000 UK parents by conducting more in-depth qualitative interviews with parents to identify areas of importance relating to the autism assessment process. Findings led to a set of criteria for evaluating autism assessment services based on what parents deemed important.

Method

Participants

In total, 11 parents (9 mothers, 2 fathers) consented to take part in the spring of 2021. A planned 12th participant withdrew before interview for unknown reasons. However, it was judged that the remaining participants achieved data saturation (Ando et al., 2014). The inclusion criterion was any parent or carer whose child had undergone an autism assessment in the UK in the last five years, regardless of diagnosis, where their child was aged between 5 and 11 years of age at the time of assessment.

No further information was collected around specific participant characteristics (e.g. age, ethnicity).

Design

A semi-structured interview was developed identifying areas of interest and concern about the autism assessment process, covering expectations, understanding of the process and potential areas for improvement, as well as attitudes to assessments conducted during COVID-19 either online or with personal protective equipment (PPE). Supplementary questions were added where necessary to clarify or prompt discussion.

Ethics

Ethical approval was granted by the body was the University of Sussex.

Procedure

Participants were recruited via social media (Facebook, Instagram and LinkedIn), word-of-mouth and email to known interest groups. Participants received an information sheet and consent form and were offered time slots and the link to an online interview, requiring access to video-calling.

Interviews lasting 15–45 min were carried out by the author via Microsoft Teams. After a reminder of withdrawal rights, participants gave verbal consent for audio-recording.

Interview transcripts were anonymised to ensure participant confidentiality, and audio-recordings were deleted by 8 pm on the interview day.

All participants were thanked and offered the chance to ask questions. Given the potentially emotive nature of the research, all were given links to advice and support.

Data analysis

Interview transcripts underwent thematic analysis carried out by the author, following Braun and Clarke’s (2006) six phases for conducting thematic analysis (1: familiarization, 2: coding, 3: generating themes, 4: reviewing themes, 5: defining themes and 6: summarizing/writing-up).

The themes and sub-themes identified were used to formulate 25 yes/no criteria, outlined in Table 2. These criteria are designed to provide services with a way to identify areas for potential service improvement, rather than for cross-service comparison.

Results

Thematic analysis resulted in six main themes and 13 sub-themes outlined in Table 1. Each theme is explored in detail below, with illustrative quotes:

1. Clarity and communication.

According to the National Institute for Health and Care Excellence (NICE) guidelines, good communication between professionals, children and their families is essential when working with autistic individuals (NICE, 2013). A key theme from parent interviews was the need for greater clarity and communication both from and between services prior to assessment. There were three main three sub-themes:

• Clarity around the assessment process.

In all, 10 of the 11 parents described knowing very little about what to expect from their child’s assessment and expressed frustration that they were not given more clarity around the assessment process to sufficiently prepare themselves or their child:

They don’t really tell you anything about the diagnosis session. You just kind of go along and then you have nothing to do with it. They say, well, you have to wait out there which, if you have a child that has special needs of any type, that’s not a good thing because they’re not prepared for that. [Participant 1]

For another mother, this lack of preparation directly affected their son’s assessment:

X on his assessment was taken into another room and for the first 20 minutes refused to speak because I wasn’t in the room because I had told him that we were going to go to an appointment together. He didn’t know how to verbalize that because he was expecting me to be there. [Participant 3]

Autistic children generally benefit from high predictability and consistency (Iseminger, 2009); therefore, it is unsurprising that many parents experienced a lack of clarity as a concern:

• Communication about waiting times.

Eight parents expressed frustration at the lack of communication from services about expected waiting times for an assessment, causing concerns that their child had been forgotten about or lost in the system. One mother described a lack of response despite requests:

I rang them every day for two years, even when I was in hospital for six months, and nothing happened there, you couldn’t get through […] but I know it wasn’t just me that couldn’t get through to them […] it was a constant call thing that I had to do before I got the golden letter. [Participant 1]

Of those eight parents, two said receiving regular updates from services would have put their mind at ease. One father described how additional communication would have been reassuring:

I think it would have been quite nice to have some indication of where we’re at in the process, and maybe to get every 3-6 months just someone to say this is where we are. At least then you know that nothing’s been forgotten, and you are slowly making progress towards the top of the list to be seen. [Participant 11]

While long waiting times for an autism assessment in the UK are well documented (Crane et al., 2016), this sub-theme highlights how continuing communication could help parents feel better supported and reduce dissatisfaction during this waiting period:

• Communication between services

Some parents expressed disappointment at the seeming lack of communication between services, whereby they felt that they needed to keep their own records to ensure things were not missed. For example, one mother described their process for ensuring that clinicians were aware of their child’s case:

I’ll turn up to the appointments with every single thing printed out ‘cause I’ve realized that none of the records go over, nothing actually gets handed over. [Participant 2]

2.Support and resources.

Many parents highlighted a need for better support and resources, describing existing support as difficult to access or ill-suited to needs:

• Difficulty accessing resources.

Parents often mentioned difficulties accessing support and resources both before and after their child’s assessment. Following their son’s diagnosis, one father likened their experiences to having to “fight” to receive support:

You have to fight for pretty much everything. You have to fight to get disability living allowance, you have to fight to get an EHCP for him. You have to fight literally to get the support in school because maybe the school has other children that need it. So literally everything on that pathway is a fight and it shouldn’t be […] [Participant 4]

In addition, in the absence of a diagnosis, support was reported as lacking, as one parent described in their efforts to manage their non-diagnosed son at home:

“And there’s no support for it because I haven’t got an ASD diagnosis, […] where’s the actual physical help for those children?” [Participant 1]

• Resources not suited to parent needs.

Four parents described the resources they received as not what they wanted or needed at the time:

The information leaflet that comes out is quite basic, we did have one leaflet, and I remember looking at it and thinking it’s the kind of leaflet you’d stick in a child’s bookbag for autism awareness week. You kind of need a bit more in depth about what autism is. [Participant 7]

While most parents did not specifically describe the kinds of support that they would have found beneficial, it is likely that this would vary between services and over time. Nonetheless, this sub-theme highlights the need to include parents when designing and assessing the appropriateness of resources to ensure they are suitable:

• Schools not equipped.

Four parents mentioned the need for additional resources/support for their child at school, feeling that schools were not adequately equipped.

One mother expressed their concerns over the available support:

When we get to senior school in September, how am I going to enforce the homework and stuff? If the tablets run out then what do you do? And there’s no support for it because I haven’t got an ASD diagnosis [for the child]. [Participant 1]

Such concerns were also coupled with descriptions of the school environment as being a stressor for autistic children, leading to attendance problems:

We’d have lots of issues with school every day crying, um, being sick, and me constantly battling with the school just to try and tweak things to make it easier for him […] But things were still really bad at school and honestly lockdown was heaven for him because most of his anxiety is around school. [Participant 5]

School was of concern for almost all parents interviewed, despite no direct questions addressing this topic:

3.Aftercare.

All participants alluded to aftercare, with nine describing a negative aftercare experience. Overall, parents placed emphasis on: emotional support for parents, and advice and signposting:

• Emotional aftercare.

Many parents described their child’s assessment and subsequent diagnosis as a highly emotive process, highlighting a need for emotional aftercare following assessment. For one mother, the news that their son was autistic brought on mixed feelings:

I was half about to cry and half celebrating. Like I didn’t really know. It was very mixed emotions for me. I was like Yes! We’ve got the diagnosis and now we can kind of crack on, there’s certain things we can kind of do for him. But then on the other side I was like “well that’s my baby […]” [Participant 7]

Some also described feelings of self-doubt, concerns that they were making the wrong decision, or worries that they or their partner might also be autistic. One mother summarises these feelings well:

I think whenever you’ve got a child and a parent you’ve actually got two patients, you haven’t got one. [Participant 2]

Other parents described more positive experiences of aftercare, illustrating ways that services can better meet parent needs. For example, the following father described how the clinician kept in contact post-diagnosis:

And then post that we had, I think a couple of, sort of touch points with [the doctor] again where she literally just already reached out and said “How are you getting on? What’s happening? It’s been six, eight months” whatever it was. Um, and there was a kind of a feeling that there was a follow up, I suppose, the feeling that they are bothered. [Participant 4].

• Advice and Signposting.

Eight parents directly stressed the need for practical support from practitioners, including appropriate signposting and advice. For example, one parent implied feeling abandoned by services post-diagnosis:

It’s almost like you get that diagnosis and it’s like “Bye! See ya! You’ve got your piece of paper now you don’t need anything else!” [Participant 8]

Similarly, one father expressed a lack of guidance:

Most parents have no idea what to do after they’ve had the ASD assessment. They actually just get the child’s ASD diagnosis and then […] wandering around in the dark to try and figure out what to do next. [Participant 4]

4.Recognition of concerns.

Nine parents noted times when their concerns were not recognised, experienced as being dismissed or aspects of their child overlooked:

• Concerns dismissed

In all, 10 of the 11 parents interviewed described feeling that their concerns were dismissed by professionals during the assessment process. One mother described their experience with the practitioner at their son’s assessment:

I did bring up what I wanted to say, but it was very much shut down. She was there to do the job. She was there to look at him during the autism assessment […] But when I started talking about the sensory sides of things and I started talking about the sleep, none of it was written down. She didn’t ask any questions. She didn’t, didn’t sort of investigate that at all. [Participant 2]

Similarly, one father described feeling unable to challenge the decision made at their child’s initial assessment:

We’d had discussions with a colleague of [the assessor], which was very dismissive. Um, and in that case we didn’t, we didn’t feel like we could say anything at all it was literally just like well, you were assessed before. It was a no. What do you expect me to do? [Participant 4]

• Things being missed.

In addition to feeling dismissed, six parents expressed concerns that things were being missed during the assessment because clinicians did not appear to acknowledge the additional information that parents had to give.

For example, one mother described concerns over their child appearing more neurotypical during the assessment:

And actually there could be several things that they’re missing. Um, but we have no idea because you’re not part of the process […] and also these children behave very differently for other people than they do for their parents. And I know they know that, but they’re not seeing the behaviours that happen at home. [Participant 1]

5.Need for personalisation.

Another key theme emerging often was the need for the autism assessment to be more personalised for children and their families. Personalisation covers a broad range of ways that the assessment could be reasonably adjusted to meet a families’ specific needs and highlights a broader issue regarding flexibility and accessibility.

For example, one mother described their experience of meeting online due to Covid-19 restrictions and how this benefited them because of their own disability status:

I love the whole of the online situation, honestly. I was made disabled in 2017. So when somebody says, can you just pop to the doctors? No I frickin can’t. […] I just think 98% could be online stuff, not all medical is 100% necessary and online stops traffic and time. And all of those things I think are excellent. I think it should be done more. [Participant 1]

Another mother recalled how their child’s assessment was a positive experience because of the assessor’s adjustments:

Uh, so they were still able to follow the ADOS criteria as per NICE guidelines, etcetera, but they needed to adapt it. […] .If he wanted to write it on the floor, then they just let him, because it meant that they could observe that, you know, and those findings were reflected in their report. [Participant 8]

One mother expressed relief that their child’s diagnosis was delivered to them, not their child, at their request:

One of the things I didn’t like was the thought of him hearing and then it somehow traumatising him because I’d like to tell him in a way that he could understand. [Participant 10]

6. Concerns around PPE/online assessments.

Unsurprisingly, given the interview timing and the direct questioning on this topic, many parents expressed concerns around the use of PPE or online assessments. The sub-themes (child well-being, engagement and assessment validity) offer an insight into how these factors affect families:

• Child well-being.

Some parents expressed concern over their child’s well-being should PPE or online assessments be used, with four individuals describing how assessments conducted in this way may be difficult for their child or other children to adapt to. As one parent explained:

I don’t think he would have coped with like the full PPE, like, he hates the sound of rustling aprons and that, he’s quite sensitive to sound like that. [Participant 7]

One mother described how this may affect their child’s behaviour:

It’s a very artificial situation, which they’ve not been exposed to, and you’re not therefore going to see their normal behaviour. You might see them being frightened and not say something you might see them being, you know […] you’re not going to see a normal interaction. [Participant 2]

• Engagement.

Some parents also suggested that children may refuse or struggle to fully engage with practitioners if they wore PPE or conducted assessments online. For example, one mother described how the use of PPE could pose a problem when it comes to child engagement:

Um, so I, I think PPE could be a huge barrier to having honest answers and also some children with ASD would find that extremely intimidating and off-putting and may not even engage at all. […] So, whilst I understand that that’s vital I also think that that could be a big hindrance. [Participant 3]

Further, over half of the parents questioned were quick to criticise the use of online assessments, with some branding them as “completely pointless” or “a waste of time” because of difficulty in maintaining child engagement online:

• Assessment Validity.

In all, 8 of the 11 parents were concerned about assessment validity where PPE or online practices were used. One mother, for instance, expressed their doubts around the ability of professionals to detect certain autistic traits using these methods:

Then I think how can you test whether someone can read facial signals if you don’t show them a face? [Participant 2]

Another mother suggested that the use of PPE may have been the reason that their son did not receive a diagnosis:

Um, but I think because there was these people in masks and visors and gloves and stuff, he was a bit […] like, yeah. So I do think it caused a barrier slightly too. Or blurred the results to what they should have truly shown. [Participant 8]

Several parents expressed concern about things missed or overlooked for assessments conducted online. One father suggested this might influence how parents felt about the service they received:

If you’ve waited two years for somebody and you have a 1-hour video call and you don’t feel like somebody’s been able to get a good enough sense, if you then don’t get a diagnosis and then you’re discharged from the process, then you’ve just waited two years. I think it would be easy to feel like you just didn’t get a fair assessment. [Participant 11]

Parent-informed evaluation criteria for autism assessment services

In total, 25 evaluation criteria for autism assessment services were derived from the themes from parent interviews (see Table 2).

Discussion

While many researchers have considered the experience of parenting an autistic child, far fewer have focused specifically on the autism assessment process, despite the importance that this may have on both family coping (Howlin and Moore, 1997) and subsequent outcomes for autistic children (Clauser et al., 2021). Previous research has identified both that parents have specific needs during their child’s assessment (Legg and Tickle, 2019) and that services may not always meet parents’ needs (Galpin et al., 2018), yet this study is the first to develop criteria for evaluating the autism assessment process derived from parents’ views and experiences. This could help improve the quality of service evaluations in ways aligning with parent needs and expectations. Better experiences during diagnosis could support improved parent coping and collaboration with services, increasing chances of more positive outcomes for autistic children, as research suggests that children often bear the consequences of their parents’ stress and burnout (Meadan et al., 2010).

Consistent with previous findings, all parents interviewed described feelings of dissatisfaction and stress associated with the assessment process (Crane et al., 2016). Several novel themes emerged, indicating feasible areas for service improvement. Each criterion also implies a specific change, which could be used to help services identify specific areas for improvement post-evaluation.

The themes highlight areas of importance to parents, which could be explored in future research. For example, concerns around a lack of communication between services do not align with NICE guidelines (NICE, 2011) that autism referrals should include all relevant information about an individual. Concerns around schools not being equipped fit with previous reports of increased parental stress around school transitions (Byrne, 2013) and a perceived lack of support during this time (Cremin et al., 2017) and highlight the importance of communication between assessing services and local schools.

Themes also support and build upon previous findings, e.g. Crane et al. (2016). For example, concerns around support and resources support findings by Crane et al. (2016) that parents who received more information about autism, how it affected their child and where they could go for help experienced greater satisfaction with services. Previous research has identified barriers related to this theme, such as inconsistent staffing (Sulek et al., 2017), underfunding for services and inadequate policy frameworks (Dowden, 2018), which may explain why this theme continues to emerge. NHS England’s most recent policy framework on autism assessment pathways (NHS England, 2023) refers to a “demand-capacity gap” acknowledging that providing adequate support is not always possible: access to information could mitigate this to some extent.

The emotional toll of receiving an autism diagnosis for one’s child was very apparent for our participants (as shown by the theme of emotional aftercare) and is also well documented throughout the literature (Feinberg et al., 2014; Crane et al., 2016). This highlights the need to support parental well-being and addresses the known link between family functioning and outcomes for autistic children (Clauser et al., 2021). Theme 4 (recognition of concerns) echoes Filipek et al.’s (1999) suggestion that professionals have historically underestimated parent concerns in relation to autism and other neurodevelopmental difficulties, leading to diagnoses being delayed until later in life. The experiences described in this study also emphasise how receiving news that one’s child is not autistic can leave parents feeling helpless and frustrated, highlighting the need to support those in this situation.

Where parents mentioned things missed, they often, directly or indirectly, attributed this to masking behaviours by their child. Masking describes a process whereby an autistic individual may attempt to appear neurotypical by controlling their natural behaviours and/or copying the observed behaviours of neurotypical others (Hull et al., 2017). Pearson and Rose (2021) argue that assessment tools such as the autistic diagnostic observation schedule (ADOS) may not adequately account for masking, given their reliance on visible external behaviours that may be made less obvious due to masking. Despite this, current guidelines (NICE, 2011) do not give specific recommendations related to the effects of masking during the assessment process. Future guidelines could address this issue. Some parents showed concerns over the validity and suitability of online autism assessments or those conducted using PPE such as masks, while others suggested that there may be concerns over engagement should these methods be used. Further research should address the validity of such conditions and provide evidence relevant to parent concerns.

Theme 5 (the need for personalisation) suggests several ways professionals can adapt the autism assessment process in line with parent needs and how small changes, such as adapting how and where the assessment is conducted, can be important to parents and improve satisfaction and cooperation with services. The need for personalisation and professional flexibility during the assessment process is potentially of particular importance for inclusion of specific marginalised groups, e.g. those with disabilities, ethnic minorities or non-native English speakers. However, demographic data was not collected in this study, and further work is needed, especially given the known stigma towards caregivers of autistic children among ethnic minority groups (Pang et al., 2023).

This study has clear limitations. The sample was small, with a potential selection bias in their motivation to respond to an interview about diagnosis experiences, given that those dissatisfied with the experience may be more likely to respond. All respondents were parents rather than carers with other relationships with the child. However, this study did include the opinions of two fathers of autistic children, an under-represented group in research. The results also relate to experience within England: other contexts may differ.

The researcher conducting the analysis had no clear bias as they were not a parent, did not have an autism diagnosis and did not work for any service currently conducting autism assessments. It is recognised, however, that given the emotive nature of the topic, some unconscious bias may remain. There may also be some further bias caused by a difference in communication style between potentially autistic participants and a non-autistic interviewer, which could lead to misinterpretation of language/meaning (Crompton et al., 2020).

These findings have clear implications for service improvement and wider policy. Given that service barriers are often related to costs and where funding for autism services in the UK is largely determined on a nationwide scale (Parkin et al., 2016), future research would benefit from addressing the cost-benefit feasibility of each suggested improvement area.

Table 1

Themes and sub-themes from thematic analysis of interview transcripts

Themes	Sub-themes
1. Clarity and communication
	1a. Clarity around assessment process
	1b. Communication of waiting times
	1c. Communication between services
2. Support and resources
	2a. Difficulty accessing resources
	2b. Resources not suited
	2c. Schools not equipped
3. Aftercare
	3a. Emotional aftercare
	3b. Signposting and advice
4. Recognition of concerns
	4a. Concerns dismissed
	4b. Things being missed
5. Need for personalisation
6. Concerns around PPE/online
	6a. Child well-being
	6b. Engagement
	6c. Assessment validity

Source: Author’s own work

Table 2

Parent-informed evaluation criteria for autism assessment services

Themes and sub-themes	Criteria (Y/N)
1. Clarity and communication
Clarity around assessment process	1. Are parents given detailed information about what to expect during their child’s assessment before being seen? 2. Are parents offered support to prepare their child/themselves before assessment? 3. Are parents offered an opportunity to ask questions about the assessment process before their child’s assessment?
Communication of wait times	4. Are parents sent routine updates on where their child is on the waiting list? 5. Are parents given the opportunity to contact services prior to assessment for an update on expected wait times?
Communication between services	6. Are all relevant case notes from doctors/schools/healthcare professionals passed over when the child is referred to the service? 7. Does the services’ procedure require assessors to read all case notes prior to seeing the child/their family?
2. Support and resources
Difficulty accessing resources	8. Is support available for parents before assessment/diagnosis? 9. Are parents made aware of all available support (and how to access) when referred to the service?
Resources not suited	10. What kinds of support are available? Are these suitably varied? 11. Are parents encouraged to provide feedback on the support offered? 12. Are parents involved in the design/type of support offered?
Schools not equipped	13. Does the service provide guidance to schools around generalised support for children with ASC/sensory needs? 14. Does the service routinely provide specific information to schools about how to best support children assessed by the service?
3. Aftercare
Emotional aftercare	15. Are parents routinely contacted following their child’s assessment to discuss their well-being? 16. Are parents given a chance to ask questions about their child’s diagnosis during the assessment? 17. Are parents given a chance to ask questions about their child’s diagnosis after the assessment?
Signposting and advice	18. Are parents offered signposting to support as a routine part of the assessment process? 19. Are parents offered the chance to ask further questions about available support on the day of the assessment?
4. Recognition of concerns
Concerns dismissed	20. Are parents offered an opportunity to voice their concerns during the assessment process? 21. Is there a procedure in place to ensure parent concerns are met (where there are concerns)?
Things being missed	22. Do parents receive a report about their child following their assessment? 23. If yes, are parents offered the opportunity to provide a response to this report?
5. Need for personalisation	24. Is there scope for the assessment process to be adjusted (where feasible) to suit parent and child needs and preferences? 25. Are parents made aware of how to request adjustments prior to their child’s assessment?

Source: Author’s own work