Post-Autism Diagnosis Support for Adults in the United Kingdom: Positive and Negative Experiences and Proposed Solutions to Address Gaps in Service Provision

Abstract

Background:

Research highlights that access to support services after a diagnosis of autism in adulthood is limited, but few studies have investigated possible solutions to this problem. We explored the experiences of survey respondents receiving or providing an autism diagnosis in adulthood, identified support, and examined characteristics of valued or desired support, in the context of limited-service provision.

Methods:

We surveyed autistic adults, relatives, and clinicians about experiences of UK adult post-autism diagnosis support and services within 12 months following diagnostic assessment. We used thematic analysis with a hybrid deductive/inductive approach; we defined broad a priori themes and triangulated respondents’ perspectives and views.

Results:

In total, 343 autistic adults, 45 relatives, and 35 clinicians completed parallel surveys. We defined four superordinate themes: (1) using networks post-diagnosis to make changes, (2) characteristics of effective and acceptable support solutions, (3) making autism support better informed, and (4) ways of addressing perceived gaps in support services.

Conclusions:

We have described examples of support leading to positive change and constructive recommendations that can guide and inform quality improvement activities by (1) those commissioning and providing adult post-autism diagnosis support and (2) professionals evaluating provision, to enhance evidence-based post-diagnostic support services.

Community Brief

Why is this an important issue?

There are limited supports and services for autistic people after they receive a diagnosis in adulthood. While research has focused on deficits in support and service provision, less research has examined positive experiences and solutions.

What was the purpose of this study?

We wanted to explore the views of autistic adults, relatives, and clinicians involved in providing diagnostic services. In particular, we wanted to know what post-diagnosis support service has worked well and what could work better by asking people about their experiences.

What did the researchers do?

We surveyed 343 autistic adults, 45 relatives, and 35 clinicians about their experience of support for autistic people after diagnosis in adulthood. We looked at what they said to find themes about what happened after an autism diagnosis. We also explored themes about positive experiences of support and possible solutions alongside descriptions of gaps in service provision and suggestions and recommendations for improvements to available support.

What were the results of the study?

We found the views of the autistic adults, relatives and clinicians could be grouped into four key areas or themes. The first theme described how community networks could be used to make changes after diagnosis. The second theme described support solutions. Examples included individualized support, psychoeducation, and support for autistic carers, families and relatives. Thirdly, we found a focus on autism experts, training and integrating support within specialist and mainstream settings. Lastly, we identified a theme which described ways of improving access to community resources and opportunities.

What do these findings add to what was already known?

We identified recommendations for ways of improving support and services based on what autistic people, families and clinicians told us. One example was finding ways of sharing information from diagnostic reports about strengths, difficulties and reasonable adjustments with healthcare staff or employers. The examples of support we identified that led to positive change can be used by healthcare and other providers to enhance post-diagnostic support provision.

What are potential weaknesses in the study?

The respondents we surveyed had recently received an autism diagnosis (during the 5 years before the study started) and described their experience of support in the year after diagnosis. Attitudes of autistic adults and relatives to receiving an autism diagnosis and accessing support and services may change over time with transitions and life experiences. The views of participants we surveyed may therefore not represent the experiences of autistic adults and relatives at other life-course stages.

How will these findings help autistic adults now or in the future?

A greater understanding of direct experiences of service users, relatives and clinicians, including learning about the positive experiences and recommendations we identified can be used to help shape support and services for autistic adults now and in the future.

Introduction

Most autistic people receive their autism1 diagnosis in childhood, but many are not diagnosed until adulthood.¹ Autistic people generally report receiving a diagnosis in adulthood as life-changing and positive but highlight a lack of post-diagnosis support.² Others describe greater self-understanding and self-compassion, positive and unhelpful reactions from other people (e.g., being “patronized”), and problems accessing support and mental health services.³ Accessing support may be beneficial during the process of adjusting to a diagnosis and in the longer term.^3–4

The UK National Institute for Health and Care Excellence (NICE) published clinical guidance (CG) and quality standards (QS) for the assessment and diagnosis of autism in adults (CG142 and QS51) to encourage delivery of best practice in health and social care provision. The recommendations are evidence based, using information available from high-quality scientific research. In contrast to the guidance on assessment and diagnosis, much less evidence is available on the provision and management of support after a diagnosis of autism in adulthood.⁵ In keeping with recent research studies, our UK survey of autistic adults, relatives, and clinicians identified gaps and areas for improvement in UK post-autism diagnosis service provision and significant unmet support needs.⁶ Fewer than 40% of autistic adults reported receiving support across several prespecified areas, for example, information on sensory issues. Many autistic adults commonly experience co-occurring mental and physical health conditions; however, significant gaps in service provision persist, and improved accessibility with adapted interventions is required (e.g., eating disorder services).^7–11 In a separate qualitative UK study, autistic people diagnosed in adulthood said the support they requested was unavailable or “not suitable”; the authors recommended support should be personalized and flexible, with opportunities for community and autistic-led social connections.¹²

Studies from other countries report similar findings; in New Zealand the diagnostic experiences of autistic adults highlighted unmet needs and dissatisfaction with post-diagnosis support.¹³ An Australian study found a lack of post-diagnostic support.¹⁴ Similarly in the United States, unmet support needs (e.g., for counseling [45.7%] or vocational support [56.5%]) and multiple barriers to accessing support such as distance and transportation costs were common (n = 1204).¹⁵ In Singapore, autistic adults reported a need for flexible support, while in Australia, autistic adults identified that employment support is often restricted to obtaining work rather than career maintenance and progression.^16,17

Research suggests that many services such as physical and mental health, social care, local authority, employment, and statutory services have limited understanding of the strengths and needs of autistic people.^10,18 Autistic people face barriers accessing primary health care while being more likely to experience co-occurring physical and mental health conditions.^19–20

Examples of positive support experiences include a multidisciplinary team (MDT) facilitated a 7-week online post-autism diagnosis group that respondents described as beneficial, for example, for sharing experiences and a sense of belonging.²¹ Peer support has been found beneficial if properly supported and funded.¹² However, most research has focused on deficits, and few studies have focused on positive experiences of post-autism diagnosis support for adults. We wanted to investigate the ways UK adult post-autism diagnosis support in the 12 months after diagnosis could be improved. To achieve this, we aimed to learn more about examples of support available and potential ways of improving support in the context of the limitations and gaps reported. This information could be used to guide and inform development of support services for autistic adults, overcoming the barriers and challenges and working toward creating more positive experiences for autistic individuals and families in the future.

We conducted a large UK survey and gathered quantitative and qualitative data (from open-response questions) on the characteristics of optimal autism diagnostic assessment services and on the support received, provided, or required in the 12 months following a diagnosis of autism in adulthood. We analyzed quantitative survey data and published the findings in two previous articles.^6,22 Our quantitative analysis showed that autistic adults, relatives, and clinicians identified some aspects of support as positive, alongside significant opportunities for improvement. We developed 11 statements describing optimal post-autism diagnostic support service provision.⁶ These findings informed data analysis in the current study.

The objectives of this article are to present findings from our qualitative analysis of the survey data we gathered and to integrate the views of autistic adults, relatives, and clinicians to capture relevant and important views regarding post-autism diagnosis support from these three different perspectives. The aims are to explore (1) experiences of receiving or providing an autism diagnosis in adulthood and any support services that may be required, (2) positive experiences and solutions to address gaps in post-autism diagnosis support services provision, and (3) the perceived gaps and limitations in support service provision.

Methods

We described our methods in detail in the linked published papers, and so we present a summary of the methods here.^6,22

Recruitment and consent

We invited three participant groups to take part in our study: autistic adults, relatives of autistic adults, and clinicians working in adult autism assessment and diagnosis services. This allowed us to explore and triangulate their different perspectives and experiences of post-diagnostic support. Autistic adults and relatives of autistic adults were invited to participate if they met the study inclusion criteria: aged 18 years and above and had received an autism diagnosis in adulthood (or were related to an adult who had received an autism diagnosis in adulthood) during the 5 years before the study. We recruited autistic adults and relatives via the Adult Autism Spectrum Cohort-UK (ASC-UK). ASC-UK is a cohort of autistic adults and relatives of autistic adults recruited to longitudinal research (https://research.ncl.ac.uk/adultautismspectrum). Regarding autistic adults who lack capacity to consent for themselves (e.g., some people with an intellectual disability), ASC-UK enables a consultee/proxy to join the cohort to represent them. Clinicians were invited to participate in the survey if they conducted UK adult autism diagnostic assessments. UK NICE guidance recommends an MDT approach to delivery and coordination of care (including autism assessment and diagnosis) and interventions for autistic adults. We recruited MDT clinicians from a range of UK sources including special interest groups, those supporting recruitment to the ASC-UK cohort, and networks of professionals working in adult autism assessment and diagnosis teams.

Data collection

The ASC-UK team searched the cohort database to identify autistic adults and relatives of autistic adults who met the study inclusion criteria. In total, 667 autistic adults and 189 relatives of autistic adults were sent an invitation to participate in the survey. A lead clinician from each participating autism diagnostic service completed the survey on behalf of their MDT team. Respondents were sent online or paper versions of the information/consent forms and the survey. Responders were defined as those respondents (from the three groups) who gave informed consent and then completed the appropriate version of the survey.

Measures

Responder’s adult Social Responsiveness Scale (SRS-2) scores and demographic information were available from the ASC-UK cohort datasets.²³ We developed a set of three surveys with parallel versions for each responder group: “Getting an Autism Spectrum Disorder Diagnosis in Adulthood, and Support or Services Received Afterwards” (see Supplementary Appendix). The survey was informed by UK NICE Clinical Guidelines (UK CG142) and Quality Standards (QS51).^5,24

All three surveys included closed and open-ended questions on five topics (service/setting, referral/pre-assessment, diagnostic assessment, post-diagnosis, and training/consultancy). The autistic adult survey (completed by adults able to give informed consent/or a consultee/proxy on behalf of adults unable to give informed consent) and the relatives’ survey each consisted of 32 questions covering three time periods: Part A: before your diagnostic assessment; Part B: during your diagnostic assessment; Part C: after your diagnostic assessment. The wording of the relatives’ survey was adjusted to ask about the autistic adult from the perspective of the relative (e.g., When did your relative get their diagnosis? rather than When did you get your diagnosis?). Ten questions focused on the post-diagnosis period and either included an option to write more detail or were open-ended. The verbatim responses to these questions were included in the qualitative analysis (see Table 1).

Table 1.

Survey Questions Included in the Analysis

Adults	19. Please list up to three things about your assessment that went well for you. 20. Please list up to three things that would have improved your assessment for you. 23. Did you have an opportunity to discuss what support might be beneficial? 24. Did getting an autism spectrum diagnosis make a difference to you? 25. Did getting a diagnosis affect access to other services? 27. Have you had an opportunity to discuss the impact of your diagnosis (e.g., strengths and difficulties, impact on work/ career, relationships)? 28. Please also list up to three things about the impact of your diagnosis you found helpful to discuss. 29. Please use the list below to tell us about any support or services you received in the 12 months after your autism spectrum diagnosis. 30. Is there any other support that you have found useful that hasn’t already been covered? 32. Could you suggest any improvements to the whole assessment process?
Relatives	19. Please list up to three things about your relative’s assessment that went well for them. 20. Please list up to three things that would have improved the assessment for your relative. 23. Did your relative have an opportunity to discuss what support might be beneficial? 24. Did getting an autism spectrum diagnosis make a difference to your relative? 25. Did getting a diagnosis affect access to other services? 27. Has your relative had opportunity to discuss the impact of their diagnosis (e.g., strengths, difficulties, impact on work/ career, relationships)? 28. Please also list up to three things about the impact of your relative’s diagnosis they found helpful to discuss. 29. Please use the list below to tell us about any support or services your relative received in the 12 months after their autism spectrum diagnosis. 30. Is there any other support that your relative has found useful that hasn’t already been covered? 32. Could you suggest any improvements to the whole assessment process?
Clinicians	21. Does your service provide any preventative interventions to support the wellbeing of people with ASD who are not in crisis? If “Yes,” please describe what services are provided: 22. Does your service treat the comorbidities or mental health conditions identified during the diagnostic assessment? If “Yes,” please describe what services are provided: 23. Within your current resources please list any ways you think your team could improve the provision of autism spectrum disorder diagnostic assessment services for adults with a possible autism spectrum disorder: 24. With increased resources please list any ways you think your team could improve the provision of autism spectrum disorder diagnostic assessment services for adults with a possible autism spectrum disorder: 28. Does your team have the resources to offer any further support/advice after a follow up session? If “Yes” (please specify what is provided): 29. Please tell us what in your opinion are the most effective ways to support adults in the first 12 months following completion of an autism spectrum disorder diagnostic assessment. 30. Within current resources please list any ways your service could improve the provision of follow-up support for adults with a possible autism spectrum disorder: 31. With increased resources please list any ways you think could improve the provision of follow-up support for adults with a possible autism spectrum disorder:

The clinicians’ survey consisted of 31 questions covering service/setting, referral/pre-assessment, diagnostic assessment, post-diagnosis, and training/consultancy. Eight questions relevant to post-diagnosis had an option to either write more detail or were open-ended and were included in the analysis (Table 1). For all three survey versions, questions about post-diagnosis focused on the period immediately following and up to 12 months post-diagnostic assessment.

Analysis

We analyzed the data using thematic analysis with a hybrid deductive/inductive approach, which is appropriate for integrating quantitative and qualitative data.²⁵ First, we used a deductive approach to identify initial a priori themes from the quantitative data.^6,25,26 Then we used an inductive approach to analyze the qualitative data. Themes were identified through the deductive and inductive approaches and were combined. Theme names changed as we progressed through analysis cycles, to reflect respondents’ views more accurately. When analyzing qualitative data, we focused on identifying positive experiences of support service and suggestions for improvements. Respondents’ descriptions of barriers and gaps in support also informed analysis indicating where services needed to improve. We examined respondents’ verbatim comments to identify themes that we labelled to reflect respondents views regarding (1) post-diagnostic support/services viewed positively/found helpful, (2) solutions regarding what might have been helpful and/or what respondents would have liked to receive or provide as part of post-diagnostic support, and (3) experiences receiving the diagnosis and barriers to accessing support as context to respondents’ views on effective and acceptable support.

The data analysis process comprised six iterative stages: (1) we familiarized ourselves with the data; (2) we developed a coding frame based upon the aforementioned a priori themes; (3) we organized data excerpts according to codes; (4) we grouped codes according to themes; (5) we reviewed, revised, and confirmed themes; and (6) we specified definitions of themes and example quotes.^25,27

S.W. and P.W. are experienced in thematic analysis and trained a team of students (A.F.-R., R.L., O.M., L.N.) to code the data. A.F.-R. and S.W. developed the initial coding frame in a word document; the frame included codes, a priori themes, data extracts, and example quotes.²⁸ Coders worked independently to code data using the same coding frame. Data extracts and example quotes were allocated to codes. Similar codes were then grouped into subthemes within overarching themes. Coders met together and with the full research team to discuss the coding process, the coding frame, how the codes best fitted into themes and subthemes, and the wording of themes. Coding continued until no new codes were identified. S.W. and P.W. completed second coding for 10% of the data analyzed, found good correspondence with the coding frame, and made small adjustments to clarify wording of codes and organization of the codes within the themes.²⁸ While quality coding can be achieved through single coding,²⁶ we conducted second coding to facilitate team working and familiarization with the large dataset among the team of six coders. The aim of second coding was not to assess inter-coder reliability or derive a numerical measure of agreement between coders; rather it facilitated team discussions around coding process, data interpretation, and development of themes.²⁸

Quality and trustworthiness

Our analysis process aligned with best practice indicators of methodological quality for thematic analysis.^25–29 Data from the three different responder groups provided us with verbatim accounts from multiple perspectives for analysis. This facilitated the development of broad insights into the topic enhancing credibility.^25,27,29 Multiple coders conducted the analysis over several months allowing prolonged and extensive engagement with the data, which informed the researcher triangulation, further enhancing credibility.^27,29 We followed best practice in qualitative research by developing detailed themes with multiple quotes to illustrate context, commonalities, and divergent views, facilitating potential for transferability of our findings to other settings.^27,29 We kept researcher meeting notes and have included descriptions and examples of our data analysis process (Supplementary Table S1).²⁷

Reflexivity

Team members comprised psychology students and clinical academics; some had lived experience of adult autism assessment and diagnosis services, and their range of perspectives facilitated in depth data analysis and interpretation.²⁹ S.W. is an experienced researcher and worked on the project over several years, with J.R.P., A.L.C., C.W., and B.I. to collect the survey data and analyze the quantitative data also collected during the survey and published elsewhere.^6,22 J.R.P., A.L.C., P.W., and B.I. are experienced clinical academics with experience of autism assessment and diagnosis services across the life course.

We received a positive opinion from Wales Research Ethics Committee-5 (Reference:17/WA/0188).

Community involvement statement

An autistic co-investigator has been a member of the ASC-UK research team throughout this and related studies.^6,22 A number of authors of this article are autistic. When designing the study, we invited autistic adults and relatives to attend two focus groups co-facilitated by a relative of an autistic person, to review and discuss study documentation (draft survey schedules, information/consent forms). We received feedback and recommendations on format (font style/size, layout, free-text space) and content (question wording/number) and revised study documents accordingly. We gave members of the autism community attending focus groups vouchers to cover their costs and thank them for their time. We invited autistic adults and relatives who had participated in our survey and who were from North East England (where the research team is based) to a local community engagement and dissemination event. We presented our study findings and received feedback that this was an important topic and that it would be helpful to tailor support to meet the needs of people with different demographic characteristics. We provided a summary of our findings in one of the regular newsletters that are sent out to all members of the ASC-UK cohort (https://research.ncl.ac.uk/adultautismspectrum).

Results

We have described the characteristics of the responders in detail in two related articles and have presented a summary description here.^6,22 In total, 343 autistic adults completed our survey (responders) (Table 2); we compared their key characteristics with those from the ASC-UK cohort we invited to complete a survey but who did not participate (nonresponders). We found no between-group differences in autism traits according to SRS-2 scores (U = 31,351; p = 0.56). Responders were significantly older (median age 42 years) than nonresponders (median age 37 years) (U = 61,204; p = 0.001). Responders more frequently self-reported depression [χ² (1) = 3.41; p < 0.05] and/or anxiety [χ² (1) = 3.95; p < 0.05] than nonresponders. The ratio of women (56.5%) to men in our study was slightly higher among responders [χ² (2) = 7.83; p < 0.05].

Table 2.

Characteristics of Responders (Autistic Adults and Relatives)

Autistic adults (n = 343)		Relatives and autistic adults (n = 45)
Gender	N (%)	Relationship to autistic adults	N (%)
Female	194 (56.6%)	Parent	32 (71%)
Male	137 (39.9%)	Grandparent	2 (4.5%)
Another gender/rather not say	12 (3.5%)	Partner	9 (20%)
Mean age [range]	43.2 (13) [19–89]	Carer or friend	2 (4.5%)
Mean age at diagnosis [range]	40.8 (12.8) [18–86]	Age adult received autism diagnosis: mean (range)	32.5 (19–65)
Ethnicity		Adult’s relationship status
White British	316 (92.1%)	Married	7 (15.6%)
Highest education		Single	27 (60%)
Postgraduate degree	68 (19.8%)	Divorced	2 (4.4%)
Bachelor’s degree	80 (23.3%)	Other or missing value	9 (20%)
School leaving qualifications	45 (13.1%)	Unemployed	28 (62.2%)
Employed	143 (41.7%)	Employed	9 (20%)
Unemployed	101 (29.4%)	Volunteering	5 (11.1%)
Retired	19 (5.5%)	Retired	3 (6.7%)
		Adult’s education
Currently in a relationship	161 (46.9%)	School leaving qualifications	24 (53.3%)
		Basic skills/vocational qualification	13 (28.8%)
		Bachelor’s degree	12 (26.6%)
		Postgraduate	6 (13.3%)

Forty-five relatives completed our survey regarding an autistic person. Among the participating relatives, 36 (80.0%) relatives were women, 9 were partners (20%), and 35 were parents (71%). The characteristics of the autistic person the relatives reported on are shown in Table 2. In addition, 35 clinicians completed our survey (Table 3).

Table 3.

Characteristics of Clinicians

Respondents	n = 35
Service type
Specialist autism team	16 (45.7%)
Adult community mental health	9 (25.7%)
Private	2 (5.7%)
Neurodevelopmental	1 (2.9%)
Forensic	3 (8.6%)
Learning disability	4 (11.4%)
Professional discipline
Psychiatrist	14 (40.0%)
Nurse	2 (5.7%)
Clinical psychologist	16 (45.7%)
Speech and language therapist	1 (2.8%)
Senior autism practitioner	2 (5.7%)

Responses to the open-ended questions ranged from a few words and short sentences to several paragraphs. The themes, derived from data from all responders (autistic adults, relatives, and clinicians), are shown in Figure 1. Themes, subthemes, and codes are shown in Tables 4–5. All the quotes are from autistic adult responders unless stated otherwise.

FIG. 1.

Themes and subthemes.

Table 4.

Themes 1 and 2: Subthemes and Codes

Theme 1: Using networks post-diagnosis to make changes			Theme 2: Characteristics of effective and acceptable support solutions
Subtheme	1: Interpersonal changes experienced through engaging in communities.	2: Intrapersonal changes experienced through post-diagnostic support about autism and what it means to the person.	1: Individualized and flexible support.	2: Psychoeducation.	3: Support for autistic carers, families, and relatives.
	People having better understanding: all relationships and neurotypical population		One-to-one support; support workers	Information pack: resources, signposting, psychoeducation
	Building community		Support in work, education	Information pack: resources, signposting, psychoeducation
	Better understanding: intimate relationships	Confidence in acceptance in oneself	Peer support	How to access support resources	Peer support
	Better understanding: intimate relationships	Confidence in acceptance in oneself	Flexible individualized support matching service user wants/needs (e.g., time/type of group)	How to access support resources	Peer support
Codes	Other people having greater understanding of behavior helped relationships	Positivity about diagnosis		Strengths, difficulties, impact on work/career	Support for relatives and families required
		Greater understanding of why I think/act in certain ways		Strengths, difficulties, impact on work/career
	Greater understanding of other people
	Working in roles to help further understanding of autism and support others		Targeted support
			Support with difficulties: employment, utilities, finances, grants, benefits	Implications of diagnosis
		Drawbacks to diagnosis		Implications of diagnosis
	Help for family/friends understand	Understanding my strengths, weaknesses, so I could accommodate better to them		Acceptance of diagnosis	Relationship support
	Inappropriate treatment due to diagnosis		Proactive use of information	Acceptance of diagnosis
	Working to support other autistic adults		Open-ended support in place, until no longer needed	Access to relevant books, online resources, role models, apps, social media.
	Felt heard and understood		Open-ended support in place, until no longer needed
	Find people like me	Empowering	Follow-up appointments
	Help for GP/medics to understand, accommodate to diagnosis	Empowering	Follow-up appointments	Time to process diagnosis (e.g., consider disclosing at work)	Family, friends: strong informal support system
	Help for GP/medics to understand, accommodate to diagnosis	Identity	Support offered is adapted for autistic people
	Ability to discuss impact of diagnosis with others	Greater understanding of sensory/social sensitivities	Support offered is adapted for autistic people
	Ability to discuss impact of diagnosis with others	Greater understanding of sensory/social sensitivities	No requirement for support services; no help needed	Help to understand sensory and social sensitivities
	Help to explain difficulties to others: in education/work/housing	Explanation of past behaviors/struggles	No requirement for support services; no help needed	Help to understand sensory and social sensitivities
			Support accessing travel/public transport	Strategies for managing
	Explanation of sensory/social issues		Support accessing travel/public transport	Strategies for managing

Table 5.

Themes 3 and 4: Subthemes and Codes

	Theme 3: Making support autism informed		Theme 4: Ways of addressing perceived gaps in support services
Subtheme	1: Autism experts and training.	2: Integration with mainstream and other specialist settings.	1: Improving access.	2: Access to appropriate community resources/opportunities.
Codes	Training, consultancy	Person to support and engagement with other agencies	No support available in my area/location	Community support
	Awareness raising	Clear communication between practitioners and providers from other sectors	Difficulty accessing services	Counselling
	Adapted psychological support, for example, CBT	Quick access to other services	Online support	Proactive work earlier before crisis
	Access to specialists for co-occurring conditions	Interventions across-agencies	Stopped getting support/services after diagnosis	Independent and third sector organizations
	Acknowledgment of strengths/difficulties in other sectors, for example, industry	Clear transition pathways between services	Support would have been helpful	Social groups
	Proactive use of information	Connections with other service providers	Communication with service provider
	Proactive use of information	Groups around needs not addressed by mental health services, for example, social skills Access to mental health services

CBT, cognitive behavioral therapy.

Theme 1: Using networks post-diagnosis to make changes

Subtheme 1: Interpersonal Changes Experienced Through Engaging in Communities

Responders described reactions and responses to having the diagnosis, including how the diagnosis helped them to reconcile and explain past difficulties and life events and to understand other people. The diagnosis helped other people understand them, creating changes in relationships with other people. Some responders said the diagnosis facilitated finding a community of autistic people, peer support, and networking: “I’d always felt like an outsider who didn’t fit in, so to be part of a group of people all the same was a good thing!” Others described new roles after diagnosis: “I’ve become a governor at my local mental health trust.” Responders said other people sometimes did not accept the diagnosis and reacted in unsupportive ways: “My parents…told me they didn’t believe I had [autism]…they didn’t believe the diagnosis.” Another said: “Sometimes I think I’m a lot more vulnerable than people see me as being and that’s not just a mental illness thing, it’s also having difficulty navigating a largely ‘neurotypical’ world successfully.” A relative commented: “Others…draw inferences from the label of autism and treat her in an inappropriate and patronising way.” We found that there was a sense of limited opportunities to disclose and difficult decisions to be made about whether to discuss and share experiences of diagnosis: “I’ve spoken to a few trusted friends, but it feels very personal, and I don’t feel like I’ve anyone I can speak to about it who really understands.”

Subtheme 2: Intrapersonal Changes Experienced Through Post-Diagnostic Support About Autism and What it Means to The Person

Our second subtheme relates to reactions and changes experienced within the self. Some respondents felt upset by the diagnosis: “I feel confused and…have lost self-confidence; I ruminate about it a lot.” Some wished the diagnosis had been received earlier: “I was very angry. I’d lived for over 25 years with a misdiagnosis”; “It made me very angry as I’d slipped through the net so many times over so many years”; “…things might have been very different for me…I would’ve done a lot better in life.”

Some responders said the lack of suitable available support compounded perceived negative aspects of an autism diagnosis: “Without follow-up I’m still struggling”; one responder questioned utility of diagnosis when there was little support available: “I’ve no idea if the diagnosis was worth it. I seem to have been labelled then told ‘good luck with that”; another said, “I feel worse about my situation because of the lack of support for autistic people.” However, other responders described increased confidence, self-understanding, and acceptance; one adult describing receiving the diagnosis as “empowering and enlightening,” and another said: “I’m not so hard on myself if I struggle socially, or with sensory [information].” For some responders, receiving the diagnosis improved mental health: “…my social anxieties…subsided once diagnosed. I was able to reduce my anxiety meds from 200 mg to 50 mg daily.”

Theme 2: Characteristics of effective and acceptable support solutions

Subtheme 1: Individualized, Flexible Support

Responders valued offers of individualized and flexible support. This could be provided through services specifically designed for autistic people; for example, one responder said that cognitive behavioral therapy (CBT) adapted for autistic people “…was very, very helpful” and “helped to think about why I feel the way I do.” Another responder said: “I was referred to a local social group for people on the spectrum which has been very helpful for getting people’s insights on certain things.” This type of support also facilitated the benefits of connecting with peers. One responder said: “It was great to meet other people like me”; another highlighted the perceived benefits when such opportunities were not available: “Connections to peer support networks. This would have been most valuable.”

Individualized support could also be through the provision of services for autistic people with similar demographic characteristics. One responder expressed a desire for personalized support tailored for specific demographic groups: “It would’ve been better if they’d discussed with the mature women the possibility of running a course specifically for them, even if it had meant waiting longer.” Another responder said: “Once I had a diagnosis, I joined a social group for young people with autism which made me feel better about myself.”

One way of promoting individualized support was the inclusion of specific advice and recommendations about required adjustments within the diagnostic report. One respondent explained: “My diagnosis letter was in my birthing notes and helped me have an infinitely better birthing experience. I had my own room after the birth and not thrown onto a ward with even more crying babies (total sensory overload meltdown situation first time around without knowing why).”

With regard to flexible support offers, one respondent was unable to join a group because of childcare commitments “I cannot access the group, because it’s at the time I have to be home for my daughter after school who is also autistic.” This suggests that running support groups at flexible times to better accommodate group members’ commitments would be valued. One relative’s suggestion highlighted views on flexible service access: “Once diagnosed it should [activate] the autism organisation and it should be an open-door never-shutting approach.” UK NICE guidance recommends a follow-up appointment after the diagnostic assessment to discuss implications of diagnosis and consider any current or future support needs (whether or not there may be appropriate support available).⁵ One clinician in our study described making a longer-term flexible support offer: “Clients are kept open for one-month post-feedback, then discharged if no-contact. The support offer is open-ended, and a few clients have contacted us months or years post-discharge.” Maintaining flexible contact with support services was considered desirable, even if support was not accessed initially: “I was given opportunity to have follow-up sessions, but we agreed I probably didn’t need them, though I was still able to utilize them if I changed my mind.”

Responders highlighted how flexibility facilitated an individualized approach and being responsive to individual needs: “For some they just want our report, plus the information we highlight to them (hospital passport, local third sector services [charities and voluntary groups], web-links).” Hospital passports⁵ comprise individualized information about autism, health, or specific support needs and skills of a person. Examples of specific individual types of support provided included advice on dealing with utilities and transport (e.g., a “bus pass to help me to be more independent”).

While gaps and limitations in support were a concern for most responders, the value of individualized and flexible approaches was demonstrated though not everyone feeling that they wanted support. Responder comments included: “We explained we weren’t really looking for services; just answers” and “I didn’t need any [support], two chat sessions was great.” Others were unsure what support might be effective: “I didn’t know what support to ask for, as I’m nearly forty and have spent a lifetime dealing with these things myself.”

Subtheme 2: Psychoeducation

Psychoeducation involves accessing information/knowledge (provided in different forms including face-to-face verbal interactions, access to handouts or online resources) to facilitate insight into mental health and well-being and coping strategies. Psychoeducation has been evaluated in some population groups, for example, people with schizophrenia; however, less research has evaluated psychoeducation for autistic adults.³⁰ Responders in our study described how accessing new understanding might be helpful: “I spent a month wondering what it all meant and what to do now”; “I’ve still not got a clear understanding of the particular set of problems I have.” Others indicated that psychoeducation had facilitated gaining insight, understanding their strengths and difficulties and opportunities for developing skills and coping strategies to mitigate difficulties experienced. One responder described a course as “helpful in trying to understand why there are complete disconnects between autistic and non-autistic people. There was a lot of role-play, the psychologist would demonstrate scenarios (like how to rid oneself of a neighbour who has outstayed their welcome!) or how to ask for things…describing and understanding emotions.”

We found that for several responders, support to understand sensory sensitivities was a common topic. One responder described getting “access to an OT [occupational therapist] specializing in autism. She explained why I’m sensitive to some things e.g., noise and insensitive to others, and helped me find ways to manage these difficulties. I spent days afterwards walking around saying WOW!! Brilliant.” Another reported: “It was enlightening and validating to have my sensory challenges acknowledged, and also sensory issues I had not acknowledged myself brought to my attention and the impact explained.” Others commented: “Would DEFINITELY benefit from this!!!”; and “I attended a series of talks given post-diagnosis…I found [sensory sensitivities] the most rewarding.”

Subtheme 3: Support for Autistic Carers, Families, and Relatives

Our analysis showed that support for those with caring responsibilities was valued: “I would have liked respite care [short breaks] for my two autistic children so I could continue studies.” Another person agreed this would be helpful “especially at particularly difficult times and new situations to be dealt with. For example, son starting school and a large amount of social interactions to be dealt with.” Responders highlighted the effectiveness of carer peer support: “For me, meeting other autistic mothers would’ve been a lifeline.” Those caring for other family members also viewed the possibility of support positively: “I was a carer for Mum and Dad and couldn’t go out with no support.”

Another reported: “My wife and I attended parallel courses. Myself for those diagnosed with autism, and my wife for those who were ‘carers’. It was helpful…although I would’ve liked more on relationships, since this is where autism has the greatest impact for me…The ‘carers’ including my wife, have kept in touch and meet monthly.” Others valued relationship support and advice: “Couples support…was very helpful”; “This would have been nice!…couples support (my husband is also on the spectrum).”

Theme 3: Making autism support better informed

Subtheme 1: Autism Experts And Training

Respondents highlighted limited availability of appropriately knowledgeable support or autism trained practitioners; for example, a relative said: “A therapist with a good knowledge of autism would be a very helpful thing indeed!” A clinician identified a need for autism experts and training: “More people to facilitate integration into mainstream services…and strategic placing of autism experts” and also “implementation of wider training strategies beyond awareness-raising especially in mental health services.” “Autism experts” could be either people with lived experience of autism, advocates, or practitioners experienced in working with autistic adults and with expert knowledge of their strengths and needs. Responders who were accessing autism experts endorsed this: “Having a therapist who understood autism and made adjustments for it was so helpful”; “I had some CBT sessions via occupational health at work which were useful as she had a background in adult autism.”

Some responders had access to autism experts in the workplace, and one said a “job coach has been really helpful in supporting me to work out strategies to manage (headphones etc.) and helping my employer understand what this is like for me.” Some did not have access to autism experts. For example, one respondent commented that “advice about how to deal with people at work would have been useful.” Respondents described the value of advocates who understood autism being available in situ: “Would be helpful to have had someone to talk to my boss with me.”

Proactive use of the diagnostic report was described (in Theme 2 subtheme 1) as a way to provide individualized support from the perspective of autistic adults and was also described in this theme as effective for awareness raising among people an autistic adult may interact with and who are in a position to facilitate adjustments/support: “With my diagnosis report, the psychologist included a page to give to my work to say ‘these are the things I struggle with, and what you can do to help me’. I didn’t ask for it, so it was a wonderful and thoughtful surprise.” A clinician observed: “Recommendations in the [diagnostic] report can be useful for…informing employers about difficulties the person with the diagnosis has, to help them in the workplace to help reduce these stressors.” One responder said: “I was able to identify some reasonable adjustments to help me at work,” and another stated: “My employer offered support allowing me to work from home.”

Subtheme 2: Integration with Mainstream and Other Specialist Settings

This subtheme describes how organizational structures and service/care pathways were important to facilitate access to support but were not always available/developed. Some responders reported that receiving the autism diagnosis helped to facilitate access to support services pathways, for example, being “offered lots of advice and support for when I returned to university”; one responder was offered “extra time, rest breaks, a solo exam venue.” We found that access to support along secondary and tertiary health care services and pathways was also viewed positively, and a need for clear pathways to access support was evident “so everyone knows where to refer to when needed.” One responder said: “Two years after diagnosis I started attending a service for people with alcohol and drug problems. They helped me learn how to identify my emotions.” Planning and communication between agencies for effective transitions between health, social, or other care providers were valued: “my midwife arranged for me to have a family support worker visit me every week once I’d had the baby, which helped me with my confidence and isolation.” However, autism-specific care and support were not necessarily available. A clinician highlighted a need for the development of “clinical groups around specific health needs that are not addressed by mental health services e.g., social skills”; another suggested groups providing “access to suitable emotional or mental health support” are required.

Theme 4: Ways of addressing perceived gaps in support services

Subtheme 1: Improving Access

Respondents highlighted geographical variations and inequalities in access to support; support might be available in some urban settings but not other locations: “I was told very little support for adults existed in my area,” and another responder said: “Because I don’t live in the city where the service is based, I can only access the assessment…not any of their ongoing support services.” Virtual methods were described as one potential solution to difficulties accessing support where barriers to access related to transport or distance: “post-diagnostic materials [web-based] that could be shared” (clinician). Another suggestion for improving access to support included providing local support within primary care settings: “It would have been helpful to see someone at my local GP [general practitioner/practice].”

Subtheme 2: Access to Local Community Resources and opportunities

One responder described a community resource positively: “I’m not in permanent employment but volunteer at a local cafe. I enjoy this.” Another responder said: “A local autism charity had a social group that met twice weekly which I found a huge support. I liked that it included people from anywhere on the autism spectrum as I was able to learn about myself, how others experience autism, and to immerse myself in a supportive, fun, and accepting environment” and “joining the support group and going out with them before meetings for a meal has been pleasurable.” A clinician described referring “on to a good range of low-level support organisations locally,” and the importance of community-based support opportunities was emphasized: “proactive work earlier before crisis to prevent development of mental illness.” A clinician said: “We run weekly autism advice services based in community (i.e., non-[National Health Service] NHS) locations, accessible by anyone with a diagnosis of autism in the area.” Another clinician recommended signposting along clear pathways to community support, resources, and opportunities as a solution to gaps in services especially if it enabled “professionals to follow-up and implement strategies.”

Community-based support and counseling/advice was viewed positively by responders: “After a few months I started to struggle…my GP helped me get some counselling…my counsellor was brilliant and helped me gain some confidence and accept my diagnosis.” One responder said: “I was able to access counselling services and I was very grateful for that…my inability to understand people gave me such low confidence and mental health issues.” Another said: “We focused on certain traits that were most impacting my life, I now have coping mechanisms that help me thanks to the counselling I received.”

Discussion

Our UK survey recruited a relatively large sample of respondents and identified positive and negative examples of post-autism diagnosis support services received within the first 12 months following an autism diagnosis from a UK diagnostic service.

We have shown that aligned with previous research, the autistic adults described increased self-understanding and changes in aspects of their inter- and intrapersonal relationships and identity after receiving a diagnosis of autism in adulthood.^2,3 Our qualitative findings build on existing understanding of what UK service users value and/or would welcome in terms of recognizing individual strengths and needs of newly diagnosed autistic adults.^6,12 The accounts provide insights into the frustrations of autistic adults, relatives, and clinicians involved in receiving/providing diagnostic services and recommendations for effective and acceptable post-diagnosis support service provision and improvements. Individual verbatim accounts provided a rich resource of information about their direct experiences.²⁵

Respondents reported several recommendations for potential solutions (including both low resource and some that would require specific funding and training budgets) for effective and acceptable services, in the context of existing limited and inadequate service provision.

One relative suggested that following autism diagnosis, diagnostic services should automatically establish a permanent link with local autism organizations for the individual. This request for automatic access to autism expertise continuity of care may be unrealistic where there are limited resources and does not necessarily recognize and/or value the rights of the autistic individual in decision-making about their care. We found that a positive experience reported by autistic people was encountering a specific person/advocate strategically positioned at university or in the workplace who could facilitate access to adjustments, support, and advice. This finding is in keeping with recent research investigating facilitating autism diagnosis disclosure in the workplace/other settings and developing job coach roles, in order to support obtaining employment through to career development.^17,31

Another crucial component of effective post-autism diagnosis support services identified was flexibility, for example, having the opportunity to keep in contact with services if required, through open-ended support, which has previously been identified as beneficial.^12,16,32 One participant highlighted transitional periods as particularly stressful such as the increased social interactions required when their children started school. Responders valued community connections, networking and highlighted the benefit/need for social opportunities that are autistic led.^12,33 We found that potential solutions to improving access and removing barriers to support groups included offering groups at flexible times (e.g., during school hours, or after work) and/or accommodating people from the same age-group, gender, or other demographic characteristics.

Responders described benefits of personalized support, ranging from gaining self-knowledge of sensory sensitivities through to psychological interventions such as CBT adapted for autistic people. Proactive use of information from the diagnostic report including specifying reasonable adjustments in hospital case-notes or for the workplace was an effective low-resource solution for facilitating personalized support outside autism specialist settings. Psychoeducation for autistic people and awareness raising and training for other people were valued.

Our findings emphasize the importance of knowledge about appropriate support being available for autistic adults attending local mainstream settings including generic mental health services—for example, access to therapists or mental health practitioners who understand the strengths of and challenges experienced by autistic people. One adult in our study questioned whether their diagnosis was beneficial when there was little support available. Research shows women’s mental health can be adversely impacted by the mental strain of living with unidentified autism prior to getting a diagnosis in adulthood.³⁴ Ensuring a diagnosis in adulthood facilitates access to appropriate support where needed.³⁵ A Canadian study found autistic women and autistic men had an increased risk of self-harm compared with non-autistic people.³⁶ This clearly shows the importance of developing post-diagnosis support services for autistic people.

The study themes align with and provide further detail for the 11 consensus statements that we previously published describing optimal post-autism diagnostic services.⁶ For example, one of the statements was “Core members of post-diagnostic autism services should include people with expertise in autism, from multiple agencies/specialists,” highlighting the value of settings (e.g., the workplace) having a good understanding of autism but also identifies ways in which “expertise” in autism can be facilitated by targeted use of information from the diagnostic report. Together the previously published statements⁶ and the themes identified in this study can be used to support service improvements for autistic people post-diagnosis.

Strengths, limitations, and future research

A strength of our study is the sample size and triangulation of perspectives from three responder groups allowing broader insights into this topic.²⁹ However, although we were not undertaking detailed interviews with responders risking thin examination of issues, this relatively large sample provided us with an opportunity to investigate broad dimensions important and relevant to this topic.²⁵ We were able to present the findings at two participant engagement events and used feedback from the events to inform our interpretation of the findings.²⁷ In contrast, a potential limitation is that we only included adults receiving a diagnosis from a UK MDT team and therefore have not captured the views of those people who self-identify as autistic. Furthermore, our ASC-UK sampling may not reflect the experiences of autistic adults and relatives at different life-course stages, since all responders had received the autism diagnosis within 5 years preceding the study and reported on their experiences in the 12 months after diagnosis. Research to investigate whether needs and access to effective and acceptable services may vary at different stages and with transitions and experiences over time is required. The attitudes of autistic adults and relatives to receiving an autism diagnosis may also change; reexamining experiences and insights of individuals over time will further inform the development and provision of effective post-diagnosis support. For example, an important topic for future research might include how best to understand associations between the age of diagnosis and the experiences of distress at diagnosis by gender and other characteristics.

We found that support for families and carers was valued but was not always available or accessible. Future research should focus on how to provide this type of support and address this service gap (e.g., couples’ support and support for autistic people with caring responsibilities). An important next step will be for us to evaluate the impact of any changes in support from the perspective of autistic people, relatives, and clinicians where there have been changes in service based on our findings.

Conclusions

We identified that acceptable support included autism-informed job coaches, community support, psychoeducation and groups appropriate for autistic people experiencing distress or mental health conditions, and access to local up-to-date information about autism support with “virtual” options. We found the characteristics of effective and acceptable support included being targeted, flexible, and personalized, with opportunities for meeting peers. We also found that individualized support may be facilitated by proactive use of information in diagnostic reports, for example, describing strengths, difficulties, and reasonable adjustments for employers. The examples of effective and acceptable support we identified in the study that led to positive change can be used by health care and other providers to enhance post-diagnostic support provision.

Footnotes

Acknowledgments

The authors are grateful to the research respondents. The authors are grateful to Dr. Alex Petrou and Professor Helen McConachie for their work on the Adult Autism Spectrum Cohort-UK, to administrators Faye Wolstenhulme and Carla Black, and to Deborah Garland (National Autistic Society) for their advice and support with the consultation groups.

Authorship Confirmation Statement

J.R.P., A.L.C., and B.I. were awarded funding. J.R.P. was Chief Investigator. S.W., J.R.P., P.W., B.I., and A.L.C. wrote the first draft of the article. S.W. completed data collection with assistance from C.W. S.W., A.F.-R., R.L., O.M., P.W., and L.N. completed the analysis. All authors contributed during the editing and reviewing process. All authors approved the final article. The article has been submitted solely to Autism in Adulthood.

Disclaimer

The views expressed in this publication are those of the authors and not necessarily those of the National Institute for Health and Care Research (NIHR), NHS, or the UK Department of Health and Social Care.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

The authors are grateful to the UK autism research charity Autistica, who funded the study as part of the Autism Lifecourse and Ageing Research Programme, and Cumbria, Northumberland Tyne and Wear NHS Foundation Trust for sponsoring the research and providing funding through Research Capability Funding. During the writing process, S.W. was supported by an NIHR Applied Research Collaboration (North East and North Cumbria) Mental Health Fellowship.

Supplementary Material

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