Neuropsychology Strengths-Based Approach for the Assessment of Autism in Adults: Qualitative Thematic Analysis of Clients’ Experiences of the Diagnosis and Feedback Process
Investigate the utility of a neuropsychological strengths-based approach to the assessment of Autism in adults; to determine the acceptability of the approach and feedback provided to clients; and gather information about improving the assessment process for future clients. The approach was grounded in a neurodiversity-positive framework, providing diagnosis-affirming care. Participants were inpatient clients of the neuropsychology service of a private adult, mental health treatment service. A structured, qualitative, interview framework and thematic analysis was employed, with questions focused on clients’ experience of the assessment process, recommendations for improvements and utility of the feedback provided. Ten adult clients with Autism participated (83% participation rate). All participants described having a positive experience with the assessment, from the information pre-assessment, to the assessment tasks, and the clinicians’ approach. Several hampering or challenging factors were also reported, including sensory challenges and mental fatigue. Most found the feedback process a positive experience. Suggestions for improving the feedback included simplification and individualisation of the information provided, and ensuring access to multiple and extended feedback sessions. Some clients conceptualised the assessment as part of their Autism identification journey and some found the concept of neurodiversity helpful. Strengths-based neuropsychology assessments, grounded in a neurodiversity-positive framework, were acceptable for adult inpatient participants recently diagnosed with Autism. All reported positive sentiments about the assessment, in addition to helpful adjustments to improve the process. Gaps were identified in opportunities to access Autism specific support following diagnosis. A number of recommendations are provided to assist neuropsychologists conducting Autism assessments for adults.
Categorising Autism from a strengths-based approach is an alternative to deficit-focused medical models (Dinishak, 2016; Urbanowicz et al., 2019). Traditional Autism diagnostic methods that dominate Western healthcare systems are strongly focused on the perceived negative aspects of the condition– as viewed from a neurotypical lens, and say very little, or often nothing, about the strengths people with Autism have (American Psychiatric Association, 2013; World Health Organization, 2022). The current Diagnostic and Statistical Manual, Fifth Edition (DSM 5) demarks all defining social features of Autism as deficits (Criterion A), and utilizes predominantly negative descriptors as categorisations for behavioural features (Criterion B; e.g. Restrictive, repetitive patterns of behaviour…;…inflexible adherence to routines…) (American Psychiatric Association, 2013). International Classification of Diseases, 11th Revision (ICD-11) is very similar in its descriptors for Autism features, leading with characterisation of the social features as “persistent deficits”, and similar adverbs for behavioural features, including restricted, inflexible, atypical, etc. (World Health Organization, 2022).
Additionally, Autism-related strengths are often reframed as being negative or pathological under these diagnostic systems. For example, the capacity to focus on a topic and gather vast swathes of detailed information about a specific topic area, and commit this information to memory, could be categorised as a significant cognitive strength, particularly when viewed vocationally for roles such as a subject matter expert. However, when viewed from a deficit-focused lens, these skills have been characterised pejoratively as “Highly restricted, fixated interests that are abnormal in intensity or focus…” (American Psychiatric Association, 2013). This suggests that this trait is universally and objectively a challenge, and ignores the contexts and situations in which it could be viewed as a strength.
This can leave people with Autism, and those seeking diagnoses, in a double-bind. Not only are the areas in which they interact and communicate differently from neurotypical people viewed as individual deficits originating within themselves, so too are their strengths (Dawson & Mottron, 2011). This potentially sets an impossible standard, from which a neurodiverse person may struggle to foster self-acceptance and build a robust self-esteem, due to constant comparison to an unattainable neurotypical “ideal”. This can be problematic, as “faking” neurotypical can come at a cost to an individual and their wellbeing. Camouflage, mimicking and masking—behaviors that are used by Autistic people to best ‘fit-in’ with neurotypical norms and/or hide their Autism, have been associated with poorer mental health outcomes, including depression, anxiety and overwhelm (Alaghband-rad et al., 2023; Chapman et al., 2022; Franks et al., 2009; Hull et al., 2020; D. E. M. Milton & Sims, 2018).
To counteract the potentially detrimental impact of traditional deficit-focused approaches, the neurodiversity movement has grown. Neurodiversity espouses the idea that diversity in brains, behaviour and processing are part of legitimate human variation (den Houting, 2019; Owren & Stenhammer, 2013). The neurodiversity approach takes a positive view of individual differences, and emphasises the strengths shown by people with neurodevelopmental conditions, rather than the aspects of difference that, from a neurotypical lens, have been viewed as ‘disordered’ (Nocon et al., 2022).
This viewpoint is supported by recent research indicating that it is the communication between autistic and neurotypical individuals that is problematic, not the communication abilities of autistic individuals themselves (Crompton et al., 2020). In the study by Crompton, et al., (2020) both autistic and neurotypical people self-rated the rapport and connection they experienced when conversing with someone in their own peer group (i.e. in autism-autism, or neurotypical-neurotypical dyads), as stronger than when in a mixed pair (autism-neurotypical dyad). Also, interestingly, both autistic and neurotypical observers rated the rapport and connection established between autism-autism dyads as stronger than either of the other dyad types (i.e. neurotypical-neurotypical and autism-neurotypical) (Crompton et al., 2020). The problem with the current neurotypical-centric approach to characterization can be further summarized by the following scenario analogy: One cohort of people, Group A, let’s call them English Speakers, say to another cohort of people, Group B, French Speakers, “We don’t understand you. You have a language disorder”. Group A, through their lack of understanding of Group B, seeks to both ‘other’ and pathologise them. This erroneous conclusion ignores the fact that both cohorts have their own way of interacting and communicating that is understandable within their peer group, and that it will take effort on the part of members of both groups to develop a shared understanding and common communication pathways (e.g. becoming bilingual).
The tendency for Autistic and non-autistic people to struggle to understand the communication, intentions and emotional states of each other has also been referred to as the double empathy problem (Crompton et al., 2021; D. Milton et al., 2022; D. E. M. Milton, 2012). The basis of the double empathy problem is that non-Autistic people can struggle to “read” the meaning and intention behind the communication of Autistic people, just as frequently as Autistic people may struggle, in reverse, with “reading” neurotypical people (Crompton et al., 2021). Examples of this include the tendency of non-Autistic people to over-estimate the extent to which Autistic people are anchored to a particular perspective, and for neurotypical people to form more negative first impressions of Autistic people than neurotypical people (DeBrabander et al., 2019; Heasman & Gillespie, 2018).
Given the highly deficit-focused approach of current medical-model frameworks, novel approaches are needed to provide assessments within a neurodiversity-positive and neuro-affirmative framework (Hartman, et al., 2023). This includes the utilisation of diagnostic tools that take a strengths based approach to characterising features of the condition. The framework proposed by Gray and Attwood (2013), takes a counter approach to the DSM 5 and ICD-11 diagnostic systems, outlined above, by proposing three defining areas of the condition, all of which are framed from the perspective of advantage or proficiency. The first two defining areas are described as, “A) A qualitative advantage in social interaction, as manifested by…” and “B) Fluent in autism, a social language characterized by…”. To continue with the analogy example introduced above, the categorisation of Autistic traits that may make someone a skilled subject matter expert, have been described by Gray and Attwood as strengths, rather than as pathological or disordered, for the third area of defining features of Autism in their diagnostic framework:
“C) Cognitive skills characterized by at least four of the following: (1) strong preference for detail; (2) original, often unique perspective in problem solving; (3) exceptional memory and/or recall of details often forgotten or disregarded by others, for example: names, dates, schedules, routines; (4) avid perseverance in gathering and cataloguing information on a topic of interest; (5) persistence of thought; (6) encyclopaedic or digital knowledge of one or more topics…” (pg. 3) (Gray & Attwood, 2013).
Neurodiversity frameworks allow clinicians ways of presenting Autistic traits in a positive light that also emphasises the functional advantages of these traits. This also forms a stronger basis for later assisting with positive, diagnosis-affirming care (Hartman, D., O’Donnell-Killen, T., Doyle, J. K., Kavanagh, M., Day, A., & Azevedo, 2023; Nocon et al., 2022). Although, it is important to note these criteria are not universally applicable as they may not be suitable for use with nonspeaking people, for example.
When approaching autism assessment from a neuropsychology perspective, the utility of neuropsychological assessments has already been outlined in some areas, including in assisting to differentiate between similar, or co-occurring conditions, and for monitoring progress, particularly academically (Braconnier and Siper, 2021). Clinical neuropsychology involves the assessment of cognition (e.g., intellectual and academic skills, attention, information processing, learning, memory, language, problem solving), emotion and behaviour via clinical interview, observation, and the administration of objective neuropsychological tests (Lezak et al., 2012). In most countries these assessments are undertaken by neuropsychologists, who are specialist clinicians trained in understanding brain-behaviour relationships across the lifespan. Clinical neuropsychological assessment can enhance diagnostic clarification and allow for the provision of tailored and appropriate follow-up care (Allott et al., 2011; Fisher et al., 2017).
However, existing evidence indicates that traditional neuropsychological assessment procedures may not be acceptable or satisfactory for neurodiverse adults. A previous study conducted in a mixed cohort of adults with neurodevelopmental conditions (including Autism, ADHD and Tourette’s syndrome), examined client satisfaction with their neuropsychology assessment feedback (Holst et al., 2009). While comprehensive, the neuropsychological approach utilised for assessment was predicated on the idea that deficits would be found, i.e.:
“The idea is that patients who have struggled throughout their lives with neuropsychological and social problems would benefit from going through a neuropsychological assessment and receiving an explanation for their psychiatric and cognitive impairments.” (pg. 50) (Holst et al., 2009).
Findings from this mixed cohort study, almost half of whom (46%) had Autism, indicated that the overall satisfaction rating after neuropsychology feedback was low, and that satisfaction was the lowest in participants who also had low self-esteem. Participants with higher satisfaction, in addition to higher self-esteem, also reported a more positive experience with the examiner. A qualitative study that included Autistic adults and parents of autistic children reported similar sentiments, with professionals’ tendency to focus on negatives, not positives, and a lack of rapport with clinicians described as barriers to satisfaction with the diagnostic process (Crane, et al., 2018).
To improve the usefulness of a neuropsychological assessment, a strengths-based approach may be more acceptable to people with Autism, and ideologically more closely aligned to the neurodiversity and neuro-affirmative diagnostic and therapeutic framework. Neuropsychology assessment can provide a high level of detailed information about a person’s relative cognitive strengths and assist with diagnosis-affirming care, (Allott et al., 2020; Kully-Martens et al., 2022; Steele et al., 2021). From a clinician’s perspective– it can be both helpful and reassuring to have the capacity to approach a feedback session armed with knowledge about the strengths a client has, in addition to any differences in functioning relative to neurotypical norms. Clinicians have identified that a strengths-based approach can assist to improve clients’ self-confidence, sense of empowerment and agency, and can be used to improve the therapeutic alliance and engagement in treatment (Steele et al., 2021). A neuropsychological approach imbedded in a strengths-based framework seeks to build on strengths, to assist with any areas of difficulty, which in the case of people with neurodiversity,1 may be largely the product of having to function in a society set up for neurotypical preferences (Duckworth et al., 2005).
The current study sought to investigate the utility of a neuropsychological strengths-based approach to the assessment of Autism in adults. To our knowledge, this approach is yet to have received substantial evaluation in the literature. The setting was an inpatient, private mental health treatment facility. The aim of the study was two-fold. The first aim was to determine the acceptability of the assessment approach and feedback provided to clients, and the second was to gather information about how to improve the assessment process for future clients.
Methods
Materials
Utilising the principles outlined by (Braun & Clarke, 2013), a qualitative interview guide was developed by the research team (five Masters or Doctoral level Clinical Neuropsychologists with four to 20 years clinical experience, three females and two males). The questions were designed to address the research aims described above. The questionnaire collected demographic information and was followed by three open-ended questions, adjunct with a series of prompts to assist the interviewer to elicit further information if required. The questions were:
1. How did you find the process of having your Autism assessment at [service name]?
(Prompts: What do you recall about the assessment? How did you feel having the assessment? What did you experience during the assessment?).
2. Can you describe anything about the assessment you thought could have been done differently?
(Prompts: Do you have changes you would recommend? Is there something that would have made it better for you?).
3. How useful was the feedback you were provided about the results and about Autism as a condition?
(Prompts: Do you feel information about Autism was explained well? Did you get enough feedback? Would more information have been helpful?).
The interview questions outlined above were presented to clients as part of a broader research project, with subsequent phases involving co-design of a mental health therapeutic support program. In addition to evaluating the acceptability of the neuropsychology assessment process (current study, phase one), for phase two, the same client group were concurrently asked about their experiences with mental health treatment, and their interest in, and ideas for, a potential group-based adult Autism mental health treatment program. As all clients were referred for their neuropsychology assessment via a mental health service and all had co-occurring mental health conditions, these issues were intrinsically linked, with post-diagnostic psychological adjustment and mental health needs having high importance. Clinical staff at the service were also interviewed in phase two of the project to gauge their ideas for an adult Autism mental health treatment program. The results of phase two will be presented in publications (currently in preparation).
Procedure
This project was approved by the The Melbourne Clinic Research Ethics Committee [Project number 339]. Eligible participants were clients who had undertaken an inpatient neuropsychology assessment for Autism, and received a diagnosis, at the service over a two-year time period (and for whom current contact details were available). The neuropsychology diagnostic service, operated in an inpatient capacity only, and as such, sourcing clients assessed at the service as outpatients was not possible. The treating psychiatrists of eligible clients were contacted first, to check for suitability to participate. Using convenience sampling, clients who met criteria were invited in a serial fashion (in chronology order, from date of neuropsychology assessment), and recruitment continued until data saturation was obtained. Of the eligible clients who were contacted (N = 12), 83 percent agreed to participate.
All eligible clients and those who participated had been previously assessed at the clinic using a neuropsychological strengths-based approach. As part of this process an individual’s strengths were assessed for, and emphasised equally, if not more, than any difficulties that may have been identified on assessment. A neurodiversity-positive (rather than deficit-based) approach to autism was employed by all treating clinicians, to support diagnosis-affirming care. The discovery criteria outlined by Gray and Attwood (2013), described above, were utilised to form the basis for conceptulising diagnosis from a neurodiversity positive lens. The principles of the specific approach are outlined in later sections of this manuscript (please see Table 3 for specific details about the principles implemented within the strengths-based approach from the inception of the study, and implemented with all clients, and those recommendations developed and supplemented to the strengths-based approach, based on client feedback, during the study). The strengths-based, neurodiversity positive approach was implemented throughout the assessment. This included during explanation the purpose of the assessment and how the assessment would be conducted. Further, it was utilized in the way feedback sheets were structured (cognitive profiles and behavioral, social and sensory preferences), how feedback sessions were conducted, and when feedback sessions also included education and support for family members or support people. An example of how Autistic features were framed in a neutral, positive, or adaptive way rather than from a deficit focused lens is provided in the following two sentences. When considering routines, a tendency in this area, an example of how this would be described is:
“[Client Name] has a preference for routines and structure, within their daily life. They feel more organized and calm, when they stick to a similar schedule for their activities, and find they are more productive and effective when they can plan, and be ready, for what is coming up in the day”.
In contrast, similar preferences described from a deficit focused lens might be described as:
“[Client Name] sticks rigidly to routines during the day, and tends to have a melt-down when things occur that don’t go to schedule”.
Whilst a neurodiversity positive approach was applied whenever possible, it should also be noted that DSM 5 Autism criteria (an inherently deficit-based framework) was also employed to guide clinician diagnostic judgement, as this was required, should clients wish to apply for the National Disability Insurance Scheme (NDIS; i.e. funded support) after diagnosis. When assessing using this diagnostic framework, clinicians used ‘difference’ rather than ‘deficit’ based comparisons to describe and discuss behaviours or functioning that may differ from neurotypical individuals/norms. An approach that has also recently been outlined in the area of paediatric Autism diagnosis (Turowetz, Wiscons, Maynard, 2024). Reports written to support an NDIS application tended to utilize more of the deficit-focused, DMS 5 aligned language, as this fitted with expectations of the insurance provider. However, the client feedback sheets (which are separate from the clinical diagnostic reports and always provided in lay language), were always written from a neurodiversity positive lens. An example of how these feedback sheets were structured and phrased, is provided in Appendix 4. On the occasions where clients were provided with both their feedback sheets (provided first, and used to support diagnosis affirming assessment feedback) and their full clinical reports, such as for NDIS applications, an additional discussion was facilitated explaining the why there was a difference in tone/language and how (at the time) the NDIS was operating from a deficit framework, so provided reports were required to mirror this framework.
All clinicians involved in the study received clinical supervision from the head of service neuropsychologist, which provided monitoring of fidelity to the assessment approach. The head of service clinician was experienced working with clients with autism across children, adolescent, young adult and adult services, and had undertaken multiple recent training workshops in the area. Supervision included the use of assessment tools, diagnostic frameworks, and the provision of feedback sessions, feedback information and family/friends education sessions in a diagnosis affirming manner. A rigid, fixed (unalterable) assessment battery, or sole and specific way of administering feedback, was not implemented, as, in keeping with the neurodiversity framework, flexibility to tailor and modify the approach suit the needs of individual clients was required. Client assessments generally took the following format: 1) general history taking; 2) cognitive, autism and mental health questionnaires; 3) neuropsychological assessment; 4) Autism features structured diagnostic interview (± ADHD interview if indicated); 5) questionnaires and interview with an informant (if appropriate/available); 6) provision of feedback about results (including written feedback sheet); 7) psychoeducation and adjustment-based supportive therapy. Clients were evaluated between three to five assessment sessions (duration of sessions and session breaks varied according to the individual client’s needs) and received one to four sessions of feedback, psychoeducation and supportive therapy. The number of feedback sessions varied according to discharge status, with clients who had already been discharged at the time of feedback generally receiving one feedback session (often online), and those that were still inpatients receiving up to four sessions. Please see Table 1 for the information about the neuropsychological and diagnostic assessment measures and questionnaires that were utilised.
Table 1
Neuropsychological and diagnostic assessment measures
Core– used all or most of the time
Additional– If indicated and appropriate
Domain
Measure
Domain
Measure
Autism Interview
Grey and Attwood Criteria (2013)
Structured Clinical Interview using DSM 5 Autism criteria
Developmental and social history
Informant information
SRS-2 Information Report
Grey and Attwood Criteria (2013)
Structured DSM5 Clinical Interview
Academic Reports
Autism Questionnaire
Social Responsiveness Scale 2nd Edition (SRS-2) Self-report
Delis-Kaplan Executive Functioning System (DKEFS) selected subtests or Controlled Oral Word Association Task/ Victorian Stroop task
Trail Making Test
Academic Functioning
Wechsler Individual Achievement Test, Third Edition (WIAT-III) selected subtests
Social Cognition
Advanced Clinical Solutions (ACS)– Social Cognition selected subtests
Mood
Depression, Anxiety and Stress Scale– 21 Items (DASS-21)
HVLT hopkins verbal learning test, CVLT California verbal learning test, RAVLT rey auditory verbal learning test
To attempt to minimise coercion to participate, a clinician from the neuropsychology service, who was not the client’s assessing neuropsychologist, contacted the client (via email or telephone) to invite them to participate. If they consented, this same (non-assessing) clinician conducted the research interview, in an attempt to minimise bias with responding. It was hoped that this would also reduce the perceived expectation on the clients to provide a positive evaluation of the assessment process, as information was gathered by someone who was not their direct assessing clinician. Participants were interviewed alone using a structured qualitative interview framework, either online via videoconferce, over the telephone or in person (on site at the service), whichever modality was preferenced by the participant (and feasibly practical from an infection control perspective, if COVID precautions were active). Emailing responses to the interview questions was also offered as a participation method, but this was not preferenced by any of the participants. All of the research team had acted as the assessing clinician for at least one of the participating clients. All but one of the research team conducted at least one interview. Prior to commencing the interview, participants were informed that the motivation for conducting the study was to find out if Autism assessments provided by the neuropsychology team had been useful for clients. They were informed that the researchers were interested in any feedback they could provide be it positive, negative or neutral, and the goal was to determine if the service was meeting the needs of clients.
Data Analysis
All interview data were coded and analysed using the inductive thematic analysis framework outlined by Braun and Clarke (Braun & Clarke, 2006, 2013), managed in an excel spreadsheet. The interviews were audio recorded, and transcribed using Otter.ai transcription software, and then fully cross-checked by one of two study researchers (JP and CF). All difficult to decipher utterances were cross-checked and discussed with the interviewing researcher until a consensus on the content was reached. The interview transcripts in their entirety were read by two researchers (CF and JP). Notes of interest were taken and discussed, and a code-book was developed. Codes were derived from brief phrases or discussion points provided by participants that captured a semantic-meaning unit. They mirrored the participants’ language and concepts. The codes were latent in nature, utilising the researchers’ conceptual and theoretical frameworks to identify implicit meanings. Complete double coding of the entire data set was then undertaken by two researchers (JP and NG). Coding output was then reconciled and all discrepancies resolved by mutual agreement.
Saturation refers to the concept that within qualitative interview-based research there is a point at which data set size (e.g. number of interviews) does not yield any further new information. Acknowledging the lack of consistency, and varying relevance, of data saturation calculation methods, an inductive thematic saturation approach was applied (Braun & Clarke, 2013; Saunders et al., 2018).2 Based on the proposal by Guest and colleagues (2020), a conservative base size of eight interviews was employed, followed by a recommended run length of two interviews (Guest et al., 2020). The new information threshold was also set conservatively at 0% for any new themes or subthemes identified. From the developed code book, coding and initial, early theming were discussed as a whole research team, after the full coding of eight interview transcripts, to determine consistency and clarity. The remaining two interviews were then coded, and analysis undertaken to determine if data saturation had been achieved. Whilst interviews number nine and ten generated new codes, they did not identify any new themes or sub-themes, and thus, based on the aforementioned criteria, thematic saturation was determined to be achieved after completion of ten interviews. The thematic grouping and descriptors were then discussed and finalised by three of the authors (CF, JP, NG) in a subsequent, final data analysis session. This included rearranging of codes and sub-theme groups to ensure that themes had a central organizing concept to capture the most salient patterns in the data, and the refinement and condensing of the themes via a thematic map2. In this session theme names were also finalized.
Results
Demographic and neuropsychological assessment data characterising the 10-participant cohort is provided in Table 2. Participants spanned across the young adult and middle age-range, however no participants were older adults (i.e. ≥ 60 years). One participant identified as transgender and one as non-binary. Several participants also identified themselves, during the interviews, as being part of the LQBTIQA + community. The duration between the time of the participants’ assessment to the time of the study interview spanned between one month to almost two years. Half of the participants were in paid employment.
Table 2
Participant Characteristics, N = 10
Demographic and psychological characteristics
Cohort features
Age mean years (SD), range
32 (9.89), 20—52
Sex assigned at birth
6 Female, 4 Male
Gender identity
4 Female, 5 Male, 1 Non-Binary
Mean time elapsed between assessment feedback and interview in months (SD), range
8.5 (7.46), 1—22
Existing or co-morbidly diagnosed ADHD
7 confirmed, 2 possible
Mean number of mental health comorbidities provided at time of referral (SD), range
3.9 (1.81), 2—8
Number of Current/Previous Depressive disorder
10
Number of Current/Previous Anxiety disorder
9
Number of Current/Previous Trauma related condition
4
Number of Current/Previous Substance use disorder
3
Number of Current/Previous Eating disorder
3
IQ mean—Full or Prorated WAIS-IV FSIQ (SD), range
106 (15.83), 72—124
Verbal Comprehension Index mean* (SD), range
109 (10.80), 93—127
Perceptual Reasoning Index mean* (SD), range
112 (17.14), 69—127
Working Memory Index mean (SD), range
96 (13.81), 74—119
Processing Speed Index mean (SD), range
105 (18.59), 71—137
SRS-2 Self-Report Total T-Score mean (SD), range
80 (4.56), 70—88
SRS-2 Self-Report Social Communication and Interactions T-Score mean (SD), range
79 (5.22), 70—90
SRS-2 Self-Report Restrictive Interests and Repetitive Behaviours, T-Score mean (SD), range
82 (6.20), 68—90
ASC Mean Affect Naming Standard Score
8.4 (3.35), 2–12
DASS-21 Depression mean (SD), range
18.6 (11.93), 2–40
DASS-21 Anxiety mean (SD), range
16.00 (8.94), 3–34
DASS-21 Stress mean (SD), range
16.20 (10.15) 4–38)
Interview duration mean minutes (SD), range
36.70 (16.75), 19—69
Age, gender identity, employment status were recorded at the time of study participation. All remaining variables were measured at the time of the participant’s most recent neuropsychology assessment; FSIQ full scale IQ. Ethnicity data is not consistently or routinely collected at the health service, and this data is not available for this cohort
* Full or pro-rated
All participants had a least two existing mental health diagnoses/conditions (as listed by their referring psychiatrist) at the time of their neuropsychology assessment. All clients had been admitted to the treatment facility for management, treatment or diagnostic clarification of mental health issues. For some clients, an assessment for diagnostic clarification, including evaluation for neurodevelopmental conditions, was a primary purpose for the admission. For other clients, treatment of an existing mental health condition constituted the initial reason for admission, with Autism features noted by their treating team, or raised by participants themselves, and a diagnostic evaluation sought as a secondary opportunity during the admission. All clients were fully informed an evaluation for Autism had been requested as part of the neuropsychology referral, and consented to this occurring during the assessment.
There was a high rate of ADHD comorbidity confirmed through the neuropsychology diagnostic process, while in several other clients ADHD was considered possible (but could not be confirmed at the time due to recent substance use affecting diagnostic clarity). The majority of clients (9/10) had overall intellectual skills (FSIQ) scoring in the Average range of ability, or above. The IQ score of one participant fell in the Borderline range (3rd percentile). However, this participant had a personal cognitive strength in the area of verbal comprehension (Average range), and did not have any trouble participating in the interview process. Three participants had overall intellectual skills in the Superior range of ability (i.e. FSIQ scoring at the 92nd percentile or higher). All participants had SRS-2 Total, Social Communication and Interactions and Restrictive and Repetitive Behavior self-report T-scores of 65 or higher, consistent with the clinical diagnoses of Autism, provided by their assessing neuropsychologists. The average Advanced Clinical Solutions Affect Naming scaled score, assessing facial emotional expression recognition, fell at the lower end of the Average range, but was characterised by wide variation ranging from < 1st to the 75th percentile. High levels of symptoms of depression, anxiety and stress were also present in the cohort at the time of their assessments, with all mean symptom levels more than two standard deviations above normative mean levels (Crawford et al., 2009). The interview lengths (comprising of both phase one and phase two questions) ranged between 19 and 69 min, due to variations in the level of elaboration and detail provided to questions by the study participants.
One participant had received a diagnosis of Autism in childhood, but the details were unclear, and records not available, and the client and their treating team sought a review assessment. A second participant indicated that had previously undertaken an assessment for Autism, a number of years prior at a different service, but were not given a diagnosis at that time. This participant sought a review assessment, and indicated that they felt recent trauma and mimicking and masking behaviours, had clouded the diagnostic picture, previously.
Participant responses to the qualitative interview questions were organized at a thematic level into three broader categories: (1) Experience of Having an Autism Assessment; (2) Assessment Feedback; and (3) General Recommendations for the Clinic. Graphical representations of the themes within the first two categories are shown in Figs. 1 and 2. Key quotes, providing examples of participant responses, in their own words, is shown in Fig. 3. Responses will be discussed below grouped by category, themes, and subthemes.
Fig. 1
Graphical representation of themes and subthemes for experience of having an autism assessment
Twelve themes were identified in the participant’s responses about their experience of having the assessment, a number of which also contained further subthemes. Figure 1 graphically depicts each of the themes and subthemes. The table provided in Appendix 1 documents all of the themes and subthemes, including frequency counts, and example responses in the participants own words, to illustrate views about each of the themes. Chronologically, the themes spanned from the process of gaining Access to an assessment, right through to the Care after assessment that participants received. Themes are provided below in Bold italics, and subthemes in Italics.
Some clients found Access to the assessment straightforward, whilst others described needing to repeatedly ask their treating psychiatrist to gain a referral. When discussing their Attitude to the assessment, a number of participants reported an openness to the process, one felt excited, another competitive with themselves on the cognitive testing. Whilst conversely, another participant stressed they were aware it was not about achieving a “high score”.
All participants provided at least one sentiment that described a Positive experience of assessment, and the highest proportion of responses related to this theme. Four subthemes were identified. A high number of statements of Positive regard were provided about the assessment, which including enjoying the experience, finding it helpful and stimulating, and feeling comfortable and welcome during the process. Many statements about Positive clinician traits were also provided. These included the clinician having a friendly, pleasant, gentle and professional demeanor, and clinicians being reassuring and non-judgmental, allowing them to celebrate their “idiosyncrasies” Participants also reported feeling trust in their assessing clinician and that the clinician was able to relay information clearly. Positive features of administration were also described. This included that the assessment process was not judgmental, condescending or intimidating and that participants did not feel interrogated or analysed. A number of participants felt that the assessment was straightforward and that the environment was not stressful or unpleasant from a sensory perspective. Many felt that their questions were answered appropriately, and were pleased to be able to utilise breaks and have the assessment over a number of sessions. Further Assisting practices/processes that were described included knowing what to expect, in advance, and having assessment tools that were ready-to-go and functioning properly.
A number of participants described there being an Advantage of an inpatient assessment. This included that it was easier to access, cost-effective (as their health insurance was already paid for), that it allowed them to have an in-depth assessment, that they considered was of high quality. They also appreciated having daily care needs supported by the inpatient clinical staff, so they could prioritise their focus and energy on getting through the assessment. Participants also appreciated that Clinician-client collaboration occurred, especially when the Clinician discussed diagnostic options with the client, and when the Clinician asked for client feedback on the diagnosis. Several participants commented on Comparisons to previous assessments they had had, where “nothing” had been found, that they were unaware of the assessment results from their childhood, and that the current assessment had been “much nicer” compared to a previous assessment they had undertaken for Autism.
Participants also described less positive features of their assessments. Hampering Factors that were identified, including the subtheme of Negatives/things to improve on, such as wanting more information about the assessment ahead of time, encouragement to speak up when experiencing sensory challenges, and the participant’s concern that they were taking up an inpatient bed to have the assessment, when they felt other people needed them more. Sensory/environmental difficulties described included external noise during the assessment, the lighting in the environment not suiting their sensory needs, rooms being too warm, and preference to have a consistent assessment room across sessions.
Additional assessment specific Aspects that were challenging for participants included Assessment specific factors such as the evaluation being mentally taxing, having trouble fitting it in with competing inpatient demands (i.e. other allied health inpatient sessions) and Pre-existing cognitive factors (dyslexia and memory issues) impacting on their engagement with the assessment process. Anxiety was also raised by a number of participants. This included feeling anxious about their assessment, with all three participants reporting anxiety voicing the concern that the assessment would fail to reveal anything or that they would not receive a confirmatory diagnosis of Autism. Another theme identified was concern about Informant involvement with questionnaires and history taking, particularly in reference to feeling invalidated when informants held a different view to the participants own view of themselves..
Following the evaluation, several participants described dissatisfaction with the Care after assessment they received from their treating psychiatrist. This included difficulty obtaining an appointment to see their psychiatrist post-assessment to discuss the outcome, and a lack of support from their psychiatrist with their Autism diagnosis.
Finally, the remaining major theme that was identified in participants’ responses about having an assessment for Autism was related to their Autism Identification Journey. A number of participants described Traits identified through prior learning they had undertaken, prior to their formal Autism assessment. This including knowledge gathering during their attendance at a sensory processing inpatient group, and prior independent reading about Autism. Others indicated that they had particular Traits pointed out by others with Autism, that were typical of people on the spectrum, or that they were explicitly asked when they had been diagnosed with Autism (before they had been referred for a formal assessment). Several participants also indicated that Autism had been raised with them in the past, but not previously confirmed, or looked into. Some participants indicated that the assessment allowed for Celebration/revelation of Autism traits, which they found empowering. A number of people indicated that during the assessment they were able to view their Autism traits with a lifelong perspective, and that it had helped them to retrospectively better understand situations and experiences from their past.
Assessment Feedback
Eighteen themes were identified in participants’ responses about their assessment feedback. See Fig. 2 and the table provided in Appendix 2, and the patient quotes in Fig. 3. A main theme in this area was Aspects that were helpful from the feedback process, with five subthemes identified in this area. This included the Skills Characterisation, with participants pleased to be diagnosed via what they excelled in, as well as having information about their cognitive strengths, in addition to any areas of difficulty. A number of participants appreciated receiving a Written Feedback sheet, finding this an accepting and helpful experience, with logical and understandable information provided that they could re-read after the session. Many commented that they gained an Improved understanding, namely of themselves, making sense of past events/happenings, and that this helped them to process happenings differently going forward. Participants generally felt that the Quality of the feedback they received was high, including being thorough, detailed and in-depth, as well as clear and well written. Other General comments that were positive about the feedback included feeling a sense of relief, that it was helpful for their NDIS application, that they felt supported by it, and that the feedback allowed them to be future focused.
Clinician qualities during the feedback were also described, which included the clinician having empathy, and encouraging participants to contact them if they had further questions. Although, some participants felt they could not take up this offer, even though it was explicitly extended. A number of participants felt receiving a Diagnosis helped. This included helping them to know which operating system they were using (see quote in Fig. 3), unpacking confusion and contributing to self-acceptance. The concept of Neurodiversity discussed during feedback was helpful to some, being described as empowering and useful in that it did not demark diversity by negative differences.
How feedback was provided varied and included in-person (inpatient feedback sessions), online sessions after discharge, and the provision of written feedback sheets on the day, or shortly after the feedback session. Participants showed variation in the Modality preference for feedback, including, email, online, and written, verbal, visual modalities. The majority of participants indicated that they found the Provided strategies and resources useful, this included incorporating them into their daily life, and finding readiness for discharge planning sessions helpful.
Participants also reported several less positive aspects of the feedback process. Some participants found the feedback Overwhelming or difficult to understand, noting that there was a lot of information to take in, and that this might be more challenging to process for people with impairments. Several participants provided comments that were classified under the theme of Brevity/rushed. These participants noted that due to their pending discharge from the inpatient service, they were not able to have a second, or follow-up, in person feedback session while they were admitted. One participant noted they did not feel they could take up the offer for an online follow-up feedback session after discharge, even though it was offered. This dovetailed with the theme of Desire for more information. A number of participants indicated that there were further things they would have liked to clarify, including having mode opportunity to explore and better understand the implications of the diagnosis, and what the assessment results meant for specific aspects of their life, including work, relationships and day-to-day functioning.
Helpful Suggestions to improve feedback were also provided. These included reducing the complexity of the text provided in the written feedback sheet, through using dot points, concise or “plain English” summaries, more diagrams and visual information, and incorporating similes and metaphors. Interestingly, one participant expressed Concern about the clinician’s time and workload. Participants viewed the clinician’s time as important, and that due to the clinician’s need to service other clients, they were reluctant to take up any further feedback sessions, even when they wanted them.
A number of different Feelings during feedback were described. These included not knowing what to expect from the feedback session, reluctance to ask questions or look foolish, feeling overwhelmed, as well as feeling comfortable and supported. The Emotional reaction to diagnosis also varied across participants, some reported feelings of grief and regret at not receiving a diagnosis until adulthood, whilst others felt lost. Several participants noted that they Processed the diagnosis with others who were also on the Autism spectrum, and that gaining information from others with a lived experience of Autism was very helpful. Having Gender differences with Autism features and presentation explained, and the tendency for later diagnosis in females, was helpful for others. Some participants had sourced a Follow-up admission at a later date, after the admission for their assessment, to allow them to work further with their assessing neuropsychologist to further process the diagnosis. Others sought input an assistant from the clinic's Consumer consultant (staff member with lived experience of mental health conditions, who acts as a peer support worker).
General Recommendations
Participants also provided a number of general recommendations about their admissions and care with the service, see the table provided in Appendix 3. Themes identified in this category included Staff knowledge improvement, particularly in regard to the understanding of nursing staff that Autism is a lifelong condition, and how to better assist clients when they are experiencing an episode of acute overwhelm (sometimes referred to by participants as a “meltdown”). This dovetailed with some participants reporting that their Autism felt like a Hidden diagnosis, because on subsequent admissions clinical staff appeared to have little knowledge of this diagnosis. Service environmental and sensory factors that contributed to distress included Noise levels, the environment triggering a sense of Overwhelm, and location and qualities of admission Rooms. There was support raised for the implementation of Autism Navigator/Peer Support roles, as well as including specific therapy and psychoeducation Groups on the inpatient group timetable that covered Autism and neurodiversity. Participants voiced support for the clinicians in the Outreach outpatient mobile support service, and felt service promotion should be increased for clients with Autism, particularly those unable to access the NDIS. Finally, a greater degree of liaison with the LGBTIQA + community was recommended, with a participant reporting there was a higher degree of neurodiversity in this cohort (of which they, themselves, identified as a member).
Discussion
Meeting the first aim of this explorative study, the rich qualitative data obtained highlighted that strengths-based neuropsychology assessments, grounded in a neurodiversity framework, were a largely positive experience for the majority of participants (adults recently diagnosed with Autism). Participants experienced differences in the ease of gaining access to the assessment, and a range of feelings and attitudes leading up to the assessment. A high number of positive statements, regarding the assessment process were provided, across the participant group. All participants reported at least one positive aspect to the assessment. Most (8/10) specifically reported finding the assessment enjoyable or helpful. Positive regard was expressed about the skills, approach and empathy of assessing neuropsychologists, including reports of how the clinicians’ manner assisted participants to feel more comfortable during the assessment process. Aligning with the strengths-based, neurodiversity positive approach, this included being non-judgmental and reassuring, which allowed participants space to celebrate their traits and characteristics. Having client–clinician collaboration in making the diagnosis was also appreciated. A number of participants felt having the assessment as an inpatient was an advantage, as they perceived it to be in-depth and of high quality, and appreciated being cared for by inpatient clinical staff whilst undergoing the evaluation.
There were mixed sentiments expressed about the sensory suitability of the assessment environments. Some participants indicated that they were happy with the environmental surrounds of their assessment spaces, whilst others indicated that external noise, lighting and the size of the assessment rooms where not ideally suited to their sensory preferences. Some challenging aspects about the assessment process were raised, including that it was mentally taxing, that difficulty was experienced filling in some of the self-report questionnaires independently, and that others felt pre-existing cognitive conditions (such as dyslexia) impacted on their engagement. Further, some participants found the informant involvement as part of the diagnostic process confronting when informant views did not align with their own views of their traits in certain areas. However, negative and challenging aspects were reported less frequently, by the participant cohort.
A number of participants had conceptualised the assessment as part of an Autism identification journey, assisting them to process and reconceptualise prior personal experiences from a different perspective. This aligned with participants sentiments about aspects of the feedback process that were helpful. Many participants reported that feedback allowed them to have a better understanding of themselves, and that having the results outlined in a written feedback sheet was a broadly positive and accepting experience. Aligning with the strengths-based, neurodiversity positive approach appreciation was voiced for being diagnosed on their personal strengths, and having a balance of both strengths and difficulties outlined by a professional. Also aligned with this approach, the concept of neurodiversity also resonated with some participants and they found the concept encouraging and empowering.
Meeting the second aim of the study, participants provided a number of helpful and practical suggestions for improving the Autism diagnostic assessment process for future clients, and for improving the general experience of the inpatient mental health admission. Whilst some participants felt well prepared with information about the assessment, others did not, and indicated a preference for more information in the lead-up to their evaluation. Several participants reported finding the feedback process was overwhelming. Suggestions to improve this included altering the way in which the information was provided (content and nature of the feedback sheet) and ensuring there was access to follow-up sessions for further discussion and exploration, so clients did not feel rushed and were able to have time to process information between sessions. Many wanted more information about Autism, and the meaning of, or implications for this, in their daily life. An Autism education or therapy group was suggested by participants as a potentially useful way to assist people to process a new diagnosis. Improving the knowledge of general clinic staff (outside of the neuropsychology team) in Autism was recommended, as well as mitigating some of the sensory aspects of the clinic that were overwhelming, particularly noise and lightening. Several participants indicated that they would have liked to have received more support as an outpatient after the diagnosis, identifying that they did not feel supported by their referring psychiatrist, in this area.
The suggestions provided by participants across the study, and identified via common links in key themes, informed the development of a series of recommendations for practice for improving the experience of adults undertaking Autism assessment. These recommendations have been provided in Table 3. The neuropsychology service at The Melbourne Clinic has since implemented a number of these recommendations. The service has also completed phase two of the study (described above, and submitted in a subsequent publication). In light of findings from phase one and two, a third phase project has also been completed, a consumer co-design project developing a mental health and well-being program specifically for adults with Autism. This program is currently under pilot implementation. These practice recommendations dovetail with the themes identified in a recently published qualitative study in adults recently diagnosed with Autism (Cage, et al., 2024). In this study, an identified theme indicated that participants reported wanted less pathologizing by professionals and stereotyping of their experiences, along with a desire for more intersectional representation, local connections and knowledge of what supports were available (Cage, et al., 2024).
Table 3
Client-Centred, Strengths and Neurodiversity-Positive Evaluation Process for Adults Undertaking Autism Assessment: Framework Implemented to Conduct this Study and Additional Recommendations Based on Client Feedback
Preparation
• Provide clients with information about the assessment process, ahead of time. Be clear about session times, durations, types of activities, session location, and assessing clinician
• Explain the strengths-based approach to clients from the outset, so that they understand that areas of strength are just as important in the diagnostic process, as areas that may differ from neurotypical norms and standards
• Explain the neurodiversity approach and emphasise that the goal is to help clients understand how they process cognitive and social information, not to pathologise or stigmatise the way they act or interact in the world
• Ensure the strengths of neurodiversity are reinforced just as much as any differences, relative to neurotypical expectations
• Reinforce that much of the “disability” that occurs for neurodiverse people comes through the challenges of having to operate in a society designed for, and by, neurotypical people
Assessment
- Encourage clients to speak up about sensory processing issues, and specifically enquire about sensory challenges in the assessment environment. Adjust for these wherever possible
• Maintain a consistent assessment room across sessions, if possible
• Check in about fatigue and energy levels. Adjust session length and frequency, as needed
- Provide assurance that allowances/accommodations will be made for pre-existing cognitive issues (such as dyslexia or memory difficulties), to assist clients to engage to the best of their abilities with the assessment process
- Use a client–clinician collaboration model when working through diagnostic features. Check-in with clients as features are being confirmed/unconfirmed, to ensure you have conceptualised the information they have provided accurately. This process is also helpful for providing education about neurodiversity and why/how diagnoses are provided
- Talk with clients about the positives and potential negatives of utilising informant involvement in their diagnostic assessment process. Encourage the client to nominate only informants they feel comfortable providing information, and discuss with them in advance, how they will feel if informant responses come back with a different perspective from their own
Feedback
- Prior to feedback, ask clients how they prefer to receive information. This may involve having examples of ways feedback could be provided, such as: 1) a detailed written feedback sheet, with a range of recommendations, resources and strategies; 2) a briefer bullet point feedback sheet containing key results and recommendations; 3) a primarily visually based feedback sheet, using diagrams, graphs or flow-charts to illustrate key information. Provide clients with a feedback sheet that suits their information processing preferences
- Incorporate multiple feedback, psychoeducation and supportive counselling sessions into the process. Clients may be reluctant to take-up opt-in opportunities for additional sessions, even when they desire further support and information. Make these part of the standard process
- Be prepared for a range of reactions in response to providing a diagnosis. Be aware clients may also experience different stages in their response process, spanning positive and negative emotions, at different times, or concurrently
Post Evaluation
• Offer to provide neurodiversity education sessions to partners, family and friends
• Actively assist in sourcing pathways for further support, following a diagnosis. With permission, liaise with the client’s treating team, and/or provide referrals to professionals who are skilled in working with clients with neurodiversity
- Provide opportunities for group and peer support
• Link clients into local Autism support or mentoring groups, if they are interested
• Link clients with suitable mental health therapy programs, if they are interested
- Co-design an Autism specific therapy program with, and for, your clients to promote well-being and support with the Autism identification journey
• Principles implemented within the strengths-based approach from the inception of the study, and implemented with all clients.
- Recommendations developed and supplemented to the strengths-based approach, based on client feedback, during the study.
The current study adds to a small, but growing body of literature investigating the utility of taking a strengths-based approached to diagnosis and patient care in neuropsychology clinical contexts (Allott et al., 2020; Kully-Martens et al., 2022; Steele et al., 2021). The results support the use of this approach in the diagnosis of Autism in adults admitted to a private inpatient mental health treatment facility. This is consistent with the recommended adoption of this approach for adults with Autism in the employment sector (Johnson, 2022; Wong et al., 2018). Since the commencement of this project a number of frameworks have been published which emphasize the utility of assisting clients to develop a positive autistic identity focusing on acceptance, self-compassion and personal strengths, as well as addressing difficulties and differences from neurotypical norms (Ferenc et al., 2023; Stark et al., 2021). Importantly, some of these frameworks have been developed by people with Autism with the specific purpose of assisting clinicians to think from the perspective of an Autistic person (Stark et al., 2021). This approach is novel in placing the emphasis on the therapist to take on the point of view and perspective of the person with Autism, rather than assuming a neurotypical perspective is the default “correct” view or perspective.
The results of this study contrast with a previous study that employed a traditional neuropsychology assessment approach in a group of adult clients with neurodiversity (46% with Autism) (Holst et al., 2009). The authors the of previous study stated that an incoming presumption of the research team was that clients would benefit from receiving information about their mental health difficulties and cognitive impairments that had caused them to experience struggle, throughout their lives. This approach appears to root the cause of the ‘struggle’ clients had experienced, with features intrinsic to themselves, as individuals, rather than to the mismatch of living with neurodiversity, in a world set-up for neurotypical preferences. It is possible that this contributed to the majority of clients rating their satisfaction with the neuropsychology assessment as low, especially those participants with low self-esteem. The results of the current assessment, in contrast, indicated that using a strength-based neurodiversity approach resulted in all participants reporting positive sentiments about the assessment process, with statements relating to the theme of Positive experience of assessment occurring the most frequently, out of all themes (10/10 participants; 99 code occurrences in this theme). The results indicate that the strengths-based, neurodiversity positive approach was beneficial in a cohort of clients with a high rate of co-occurring mental health conditions, a relatively common occurrence in adults with Autism (Lai et al., 2019).
Several limitations of the current study are important to acknowledge. The implementation of the research project by staff in the neuropsychology team who also conducted the diagnostic assessments adds a potential source of bias. Efforts were made to reduce this, by ensuring the approaching and interviewing researcher was never the participant’s assessing clinician. Nevertheless, participants were aware their clinician was part of the research team, and this may have impacted on the type of feedback they provided. Secondly, it is possible that only clients who were happy with the service they received agreed to participate. Thus, views of those who were less satisfied may not have been captured. Notably, however, 83 percent of the clients meeting criteria, who could be reached for contact, agreed to participate. Finally, the project only included clients who received a confirmatory diagnosis of Autism, as a result of their assessment. It is possible that clients who were assessed, but did not receive an Autism diagnosis, may have provided different feedback. Finally, as a cohort, the majority of participants in this sample had overall intellectual skills that were Average, or above, for their age group, with no participants having verbal comprehension skills (i.e. WAIS-IV VCI) below the Average range of ability. Thus, different perspectives may have been provided by clients in different intellectual ranges, and those for who verbal information sharing was not a modality preference.
Conclusion
A strengths-based diagnostic assessment approach to Autism in adults is acceptable, and predominantly helpful, from the perspective of inpatient clients seen at a private mental health treatment facility. Positive statements were provided, including that it was enjoyable, stimulating, supportive, respectful and improved participants’ understanding, of themselves. Hampering factors with the assessment process generally involved sensory challenges in the environment and fatigue. The feedback process was also positive and helpful for many. However, some indicated that opportunities for further feedback, tailoring of the feedback to suit their information processing preferences, and specific information about affected aspects of their daily life, would have been beneficial. Anchoring clinical assessment and practice in a neurodiversity-positive framework, and providing diagnosis-affirming care, may be a more acceptable way to approach adult Autism assessment, than traditional deficit focused modes of practice.
Acknowledgements
We thank all participants for their generosity of time with this project. We thank staff from the Olga Tennison Autism Research Centre at La Trobe University for their guidance during the early phases of this project. We also thank Dr Honor Coleman of the University of Melbourne, for her guidance with the research methodology.
Declarations
Competing interests
The authors report there are no competing interests to declare.
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Neuropsychology Strengths-Based Approach for the Assessment of Autism in Adults: Qualitative Thematic Analysis of Clients’ Experiences of the Diagnosis and Feedback Process
Auteurs
Caroline A. Fisher
Nicci Grace
Edmund Tsang
James Lewis
Jessamae Pieters
“I found it difficult in terms of getting my psychiatrist to believe me, that it was a concern. I think it took me about two years of saying that—I think it’s something else, I think it’s something else, it’s not just depression, I think there’s something more significant here—to get the referral in.”
“…and they were like, you know, you can get tested here if you want to. And I was like, "Oh really?", and then I asked my psychiatrist about it and then, it was pretty easy from there.”
Attitude to assessment
Openness towards assessment and admission (3)
Required a level of insight into myself (1)
Excited to have the assessment (1)
Not about trying to get a high score (1)
Competitiveness, wanting to be my best (1)
Sense of achievement after assessment (1)
“… so myself I had come in here with an openness knowing that there was, there was only something you know, to gain because I really felt like I had nothing.”
“And I started to do some reading. And I was like, my goodness, this explains a lot. So the assessment was really important to me…. I was also very excited to have that opportunity for the assessment.”
“I mean, I think, certainly, as a test taker, I’m someone who wants to do well and normally does do well. So there is an element of competitiveness or wanting to get the best out of myself in the test, but realising that the idea was to identify what I’m good at…. so it was fine.”
Positive experience of assessment
Positive regard
Positive/Enjoyable/Helpful/Great experience (17)
Positive regard for clinician, including looking forward to seeing them/working with them (5)
(Cognitive) Tasks fun/enjoyable/stimulating (2)
Felt comfortable/welcome (1)
Nothing stands out to do differently (5)
Grateful to clinician/for time provided (1)
“It was good, actually. It was very straightforward. So the tasks were explained very clearly. Um, it wasn’t a particularly stressful environment, it was actually somewhat fun going through all of the various tasks.”
“…it was an enjoyable experience, really. It was, it was much nicer than the first time I was assessed for autism. So, I would say that it was quite good.”
“But yeah, it was good. And like going through the cognitive tests, like everything was explained really well. And I kind of started looking forward to seeing [Clinician Name] again, because it was like, kind of comforting to just be with someone that was explaining things well, or not talking to me like I’m stupid though.”
“I wouldn’t say that the process itself would need to change too much, because I found it quite good and enjoyable.”
Positive clinician traits
Clinician pleasant/gentle/friendly (4)
Clinician was patient (2)
Clinician encouraging/provided reassurance (3)
Clinician curious (2)
Clinician reframed things in a positive way/light (2)
Developed/had trust in assessor (3)
Clinician did not have any expectations/agenda (2)
Clinician soft approach/facilitation helpful (1)
Clinician able to relay information clearly (3)
Clinician was professional (1)
Clinician was knowledgeable & spent time required to help me understand Autism (1)
“… but [Clinician Name] was great, I mean, very, personable, explained what each step was about, you know, talked about, you know, it’s not you trying get a higher score, or, you know, sort of just generally made me feel relaxed.”
“… almost giving opportunity to celebrate some of my own kind of idiosyncrasies, and I think that’s when I really started to trust [clinician]”
“[Clinician Name], they spoke very clearly, articulated what the test was required, was also quite non-judgmental, as well. So I sort of noticed that, whether or not I got, I’d [do] it fast or slow, wasn’t important. It was just, they were very non-judgmental.”
“That’s when I could sense their curiosity. And the conversation started to feel like she has a fantastic ability to put a positive spin on everything. So even if we were delving into some dark moments, you know, it was, in fact, a celebration of a choice that I made, or a characteristic that I displayed that otherwise thought to be a negative. Every moment of reveal from my part was met with a sense of almost celebration, celebrating it, which was so beautiful.”
Positive features of administration
Not condescending/judgemental/intimidating (3)
Not pushed into any particular type of answer (2)
Not an interrogation/didn’t analyse me (4)
Assessment was respectful of my needs (3)
Not a stressful environment (1)
Assessment straightforward (3)
Assessment explained clearly and in a way that I didn’t feel stupid (2)
Sensory environment was suitable (5)
Clinician answered all my questions (4)
Assessment thorough/in-depth (1)
Encouraged to raise concerns/checking in throughout to avoid overwhelm (1)
Utilised breaks and multiple sessions (6)
Assessment well run and paced—appropriate/slow/at my own pace (2)
Described cognitive tasks/flow of session(5)
“… the process of these activities was so stimulating, it did not feel condescending, it did not feel targeted or like it was pushing me toward an answer that maybe they wanted to hear. It was it was just a really fun exercise.”
“It was these questions, these assertions, these prompts were introduced with almost as if it was of their own curiosity and which it was, but they didn’t feel like a moment of interrogation.”
“And so it made it feel like it was there to kind of support me and not necessarily just to interrogate me or analyse me or anything. So that was good.”
“Well, we spent most of the day in a very small room with a window. So, I mean, there’s limited space available in a hospital to begin with. And for me, personally, being in a very small room, like that was actually somewhat comforting.”
“I found it being more than one day [was] helpful. I found time between the different parts of the assessment useful to clarify my thoughts and what I wanted to express, which was one of my biggest difficulties, being able to articulate.….those periods in between to reflect on what [Assessor Name] asked and the different things we talked about, gave me time to be able to process and be able to formulate what I was trying to say.”
“[I] wish we did this, you know, in childhood. So I don’t know. I guess it was fairly in depth. So we went through a lot of stuff.”
“I think it was a good, slow pace.”
Assisting practices/processes
Assessment tools prepared and ready to go (1)
Knowing what to expect helped (3)
Time between assessment sessions helped to clarify thoughts/what to express (1)
“So the iPad worked seamlessly, and the blocks were there. And you know, they had all the papers and pens were working, all that kind of stuff. And because, because that can, if there’s sort of like a delay in that, with technology that can, that can be very unsettling. And really break your concentration. So the fact that that worked seamlessly, that was good.”
Advantage of an inpatient assessment
Access, ease, cost, depth and quality (3)
Taken care of, whilst being assessed (3)
“But having the ability to get it done as an inpatient as part of my hospital stay meant that actually made it financially accessible, because I didn’t have to pay anything further. And I was able to take my time with it, and actually have connections to the staff doing it. So I was able to get the additional support and care that I needed, while actually doing the testing.”
Clinician-client collaboration
Clinician discussed diagnostic options with me (1)
Clinician asked for my feedback on diagnosis (1)
“…and I appreciated that [clinician] did actually discuss with me, potential diagnoses as well. They went over, you know, what disorders I was displaying symptoms of as well as autism and asked me for my own feedback, and opinions on things.”
Comparisons to previous assessments
Better than last time I was assessed for Autism (1)
Previous assessment came up with nothing (1)
Previous assessment with no known outcome (1)
“…and it was, it was an enjoyable experience, really. It was much nicer than the first time I was assessed for Autism. So, I would say that it was quite good.”
“I have a bit of anxiety because I’ve done tests in the past, and they have come back with nothing.”
“…because I had done a very similar test in my youth. But my parents never told me the outcome.”
Hampering factors
Negatives/things to improve on
Would have liked more information about assessment process (1)
More encouragement to speak up about needs (1)
Assessment could have been done as an outpatient, I took up a bed (when not being assessed) (2)
More assurance trauma symptoms would not lead to other symptoms being discounted (1)
“So I guess as much info that someone could have about what’s going to happen, may reduce anxiety about what’s going to go on.”
“… I don’t want to ask to say that, you know, maybe we’re not allowed to ask? So that, I guess being able to, again, maybe that one page is saying "it’s okay to speak up about the process".”
“So there was a few days. You know, I felt like I was taking up a bed, I sort of you know, that other people maybe need a bed.”
“I think maybe the only thing and I might not recollect if [Assessor Name] did this, this was just a validation of that to just comfort myself around that, and that it wasn’t going to be dismissed immediately because of the trauma. That would have been all…”
Sensory/environmental difficulties
External noise (4)
Small assessment room (1)
Large spaces anxiety provoking (1)
Issues with light(s) lighting (7)
Sensory challenges made me more fatigued (1)
Too warm (1)
Assessment rooms were a challenge (1)
Preference for a consistent room (1)
“Um, the thing is a little bit with me, I find it difficult if there are different sources of noise. So you know, obviously there was a lot of construction going on at the clinic when I was in there, and it was fine when we started out but then it was, it was drills or something going on.”
“It was good when I did the assessment, because we’re in a room that didn’t have the white lights in it. But when I caught up with [Clinician Name], the second time, the room that we were in had the big white light, and it was flickering, and it was extremely distracting.”
“The only thing, kind of looking back at it was maybe the setting, because we’re just in like a small room. And it was quite warm, you know, no windows or anything like that, and bright lights, that was a little bit, maybe a bit overwhelming at times. So it just made me a bit more fatigued.”
Aspects that were challenging
Assessment specific factors
Assessment was mentally taxing/exhausting (1)
Articulation is one of my biggest difficulties (1)
Trouble filling out questionnaire—left items blank (1)
ASD Assessment should have been the priority instead of competing with other appointments (1)
“Some bits, yeah, some bits were, yeah. Were a bit of a struggle, a bit of a drain on the brain, but I suppose that was its purpose. So I didn’t like that, but it had a purpose.”
“And the testing process itself was very, it was mentally taxing, but done in a way that was very respectful of my needs.”
“I had to squeeze time in between other meetings with psychologists and psychiatrists, when really the ASD testing and discussion really should have just taken precedence for a week…. Because it is really overwhelming. And you’re trying to conquer a whole bunch of issues in one week, it’s just too hard. It really took it out of me.”
Pre-existing cognitive factors
I have memory issues (2)
I also have dyslexia (1)
“So, I didn’t feel silly in any way, which was really what I was really nervous about, because I also have dyslexia, so I was nervous about that…. The questionnaire for it first, and it was like, I can’t remember exactly, but I had a lot of trouble filling it out…”
Anxiety
I was anxious/nervous about feeling silly (1)
Anxious they would find nothing/not diagnose (5)
Anxious differentiating trauma and Autism (1)
“I was incredibly anxious. Autism was something that was flagged for me a number of years ago…. and I found that significance increased, like this is important to me, increased my anxiety quite a lot.”
“I was a little bit anxious over whether or not I would be, whether we would have the diagnosis sort of taken away, or if I’d keep it.”
Informant involvement
Invalidation experienced with discordance (3)
Informer info gathering could be improved (2)
“…the responses that I had provided were quite, I guess, discordant to the responses that the friend of mine who had provided….I would say I would have responded close to a particular kind of pole and my friend would say "I don’t think that at all"… it was a bit confronting.”
Care after assessment
Lack of psychiatrist support/access on discharge (3)
Engaged with new psychiatrists as outpatient (1)
“…to get confirmed and actually talk about it, like, what does this actually mean for me, kind of thing. So that was not great. And [psychiatrist] has not offered any support whatsoever… So there’s definitely been a lack of support with the diagnosis.”
Autism identification journey
Traits identified through prior learning
Sensory therapy group lead to referral request (1)
Previous reading on Autism—identified traits (1)
Level of Autism understanding before assessment (1)
“Well, um, in terms of feedback about autism as a condition, I already knew most of it, so it wasn’t, you know, helpful or unhelpful exactly.”
“And I’ve done a bit of reading about ASD and two friends that are Autistic as well both asked me at different times, "So when were you diagnosed with Autism?" And I started to do some reading. And I was like, my goodness, this, this explains a lot.”
Traits pointed out by others with Autism (3)
“And then, I had a few people happen to be on the spectrum asking me if I was on the spectrum.”
Celebration/Revelation of Autism Traits (3)
“… was this kind of epiphanic moment. I think a lot of what may be kind of displays of autistic behaviour.”
Autism traits viewed with lifelong perspective (4)
“…part of the reason that I remained undiagnosed for so long was that I [viewed] my symptoms as just me.”
Autism previously raised/not-confirmed (4)
"Autism was flagged for me a number of years ago. At the time, I was dealing with a lot of trauma… So it was sort of set to the side because… they couldn’t really tell what was what.”
“…in the feedback after the assessment were these really encouraging and empowering observations made by [Assessor Name], that qualified their belief and their diagnosis more through areas that I excelled in and that was, it was just really nice.”
“…so in the feedback. Yeah, there was there was strong mention of kind of all of the things that I that I excelled in the diagnosis process, that was, it was almost like getting a report card. Like from grade school…”
“The other feedback that I got about specifics of my condition, however, the areas that I struggled most with, the areas that I excelled with, all of the actual symptoms being listed out and discussed with me. I mean, I got the summary paper that, which went into detail about everything, and that was very insightful and very helpful.”
“Ah, I did get a report, which I found helpful because I could like look back on it later on read it.”
Improved understanding
Gave me a better understanding of myself (5)
Feedback made sense/made things make sense (3)
Feedback helped me to process things differently (1)
Helpful in determining strategies & support (2)
Discussed how ADHD/ASD can interact (1)
Assessment validated knowledge of ASD traits (2)
Understanding traits led to good & bad feelings (1)
“I’ve been able to process things I guess a bit differently… have things sort of, a better understanding of why, you know, I make rational decisions. And sort of helped me accept, you know, it’s not that I’m different that I, you know, I, I don’t need to do certain things. Yeah. Like, you know, I like to sort of, outside the box kind of, just yeah, I don’t need to go with the crowd so to speak, just because that’s just what is expected.”
“It was very in-depth and made a lot of things make sense…. Especially thinking back, you know, situations that I’ve been in the past, you know, didn’t sort of make sense why those things happened.”
“I had like an ADHD assessment at the same time, so talked through that as well and kind of spoke about how the two can interact.”
Quality of feedback
Feedback was thorough/in-depth/detailed (5)
Feedback clear, well-articulated/written (1)
“Like the, the write up and explanation after the assessment was really in-depth.”
“And the stuff that we’ve gone through, was very thorough, since then. I don’t, I don’t think there’s many more topics.”
General
Feedback in line with what I was already aware of (2)
Feedback made things easier going forward (1)
Positive experience of feedback (good, went well) (3)
Feedback was a relief (1)
Follow-up session helpful (2)
Helpful for NDIS application (4)
More than just: "Here are the results, off you go" (1)
Future focused: Support/understand/follow-up (1)
“…well I think I do still have it [Feedback sheet]. But I’ve kept that with me as a really positive experience. And it helped me accept this new thing.”
“So that was good, because again, it wasn’t just, "Okay, here’s the result off you go", and kind of thing it was "Okay, so what’s next?", and I did feel kind of well supported in that. That hopefully, there’ll be a bit more follow up. And I think I was encouraged to contact anyone in the clinic if I need additional support or have any questions following up. So that was really good as well.”
“Actually, I believe they did go over some groups that are supposed to help people with autism function as adults and stuff, but I have completely forgotten what they were. But I do recall it being discussed with me, because we were talking about me applying for NDIS.”
Clinician qualities
Clinician kind/empathetic (1)
Encouraged by clinician to contact for questions (2)
“And I think I was encouraged to contact anyone in the clinic if I need additional support or have any questions following up. So that was really good as well.”
“So, I didn’t feel I could go back, even though they said "you can contact me", I didn’t feel like I could.”
Diagnosis helped
Let me know which system I am using (2)
Unpick accumulated confusion (1)
Self-acceptance (2)
Understand deeper complexity of relationships (1)
“I was able to start to use this new apparatus that I received this diagnosis to retroactively unpick a lot of confusion, intention that I’ve accumulated, especially in my teenage years.”
“Which then provided me with the kind of clarity so that upon returning and revisiting and working with [Clinician] again, would kind of look to the future a little bit or just start to start to kind of understand maybe a deeper complexity regarding interpersonal relationships.”
Neurodiversity
Good to hear positives about Autism neurotypes (1)
New to me, good shift from Autism as faults (1)
Encouraging/empowering observations (1)
Diversity not defined by negative differences (1)
”But what was sort of, strong, not strong, the best part of the feedback that came after was, how it spoke about Autism and alternative neurotypes. Qualities that were positive. So, it was really nice, because you know, in any respect, diversity should not be defined by negative differences, it can be as easily described by other areas, positive areas, areas that make [it clear] in the feedback.”
How feedback was provided
Feedback on final day of admission (1)
One session feedback (1)
Verbal in-clinic feedback (4)
Written feedback sheet posted out (6)
Feedback not face-to-face (4)
Follow-up session at later admission (1)
“And I think I ended up having to leave the hospital earlier before I got the report, but she was in contact with me via email and also gave me a phone call because I struggle with the emails and was able to talk through it with me, which was good. And then I came in again, about maybe five months after, and I was able to meet with [Clinician Name] and have that sort of reflection on the sort of, coming [to the] conclusion of a diagnosis.”
“I ended up doing a zoom appointment, because my clinician ended up getting unwell. It was going to be in person, but then ended up getting jiggled around a bit. Ended up doing it via zoom, so I still had the ability to have the option for face to face, to a degree, without the risk of [COVID] exposure or any of those things.”
Modality preference for feedback
Dislike of phone feedback/follow-up (1)
Preference for online follow-up (1)
Preference for email follow-up (1)
Specific time and modality for feedback (2)
Give options for feedback (verbal/written/visual) (1)
“But if, again, if it was the psychologist saying, "Yep, I’m going to call you at three o’clock. And we’ll go through the five questions", I’d probably be okay. But if I just got a call randomly, that said "Oh have you got time then to go through the report?", I probably would say no, and no I haven’t. And then I wouldn’t ask again”
“Because everyone’s got different languages that they speak even if it is English, if that makes sense. I respond really well to things like metaphors and similes and diagrams and stuff like that, where I can imagine a description of something being like compared to something else.”
Provided strategies & resources
Resources were helpful (8)
Resources were hard to follow-up (1)
Useful strategies dealing with ASD in daily life (2)
Strategies were simple/relevant/helpful (4)
Readiness review before discharge (1)
“And my impression was that by helping me, [Clinician] was actually going above and beyond and saying, look, we’ve done the testing. You’ve got some traits, I’m not just going to leave it with you. Here are some, things that I really believe could help you. And so I actually felt that she had gone above and beyond in providing me with those sorts of the additional strategies. So that was good.”
“And then there were some strategies that I might find useful in dealing with ASD in a day to day life. And I actually felt that those were very, very useful. And I’ve employed them ongoing.”
Overwhelming or difficult to understand
A lot to take in/overwhelming/too much info (3)
People with impairments may not understand (1)
“A bit overwhelming. I didn’t really fully understand what was said. I’m not sure whether it was just because it was a three plus page document, or whether it was just because I do a lot better when I get dot pointed information that’s really clear and concise and quick, rather than lots and lots context
Brevity/rushed
Would have liked more time on feedback (1)
Would like a second/another feedback session (2)
Feedback was less than I expected (1)
“Like, so it all was probably a bit more rushed than it normally would be. And [Assessor Name] said I would normally have another session to go through in more detail… But probably I was thinking about this today, that she said "look it’s a lot to take in", and I was a bit emotional about it, trying to process it. And they were very kind and empathetic about, you know about it. So I felt really comfortable that it didn’t matter that I was.”
Desire for more information
More questions I wanted to clarify (3)
Time to explore/unpack things (3)
Information about meaning/implications (6)
Personalised information on symptoms (3)
What results mean for work (3)
What results mean for relationships (1)
What results mean for what I’m good at (1)
What results mean for what I struggle with (2)
How it impacts you as a person, day-to-day (3)
How it interacts with other mental illnesses (1)
More explanation on Autism (3)
ASD—the way brain is structured (1)
What’s next?—would be really helpful (2)
ASD education group would have helped (3)
“So probably, what I think would be beneficial for me and might be to other people on the spectrum is, to have a bit of time to actually go through it, and either email questions or set up a Zoom or something, because for me, on the spot, I can find it difficult to ask, because I’m trying to not trouble someone, and I’m trying to please someone. And, you know, I don’t want to ask something in case it’s obvious, or I might look like a bit of a fool.”
“But maybe a little bit more detail, because yeah, you obviously, the feedback was about half of it and the rest was resources, which again, is useful. I’ve done EMP [emotion management program] in there, so some of the stuff already kind of knew. But again, if you’ve never done that, the links or resources would be helpful.”
“Possibly just more about my own personal symptoms, like in the, in the feedback there were different aspects of my presentation, obviously, in that feedback. I didn’t feel that there was, there was a great deal of personalised information in there.”
“I think there could have been a little bit more explanation of Autism. Because I did get good resources, but I found it personally hard to follow those up.”
“It’s interesting that the [Inpatient] programme doesn’t have any classes on it. They talk about a whole lot of different things…. I think that would be good. I think having a peer support session as well would be good.”
Suggestions to improve
Prefer dot-points (1)
Preferred a more quick concise feedback (1)
Plain English version of feedback sheet (1)
Slabs of text difficult/prefer diagrams (3)
Prefer metaphors/similes (1)
“So a plain English version of the report would probably be a good option if people need it. People that have less developed communication skills. Because there are certain words in there like comprehension and stuff like that, which I understand because I’m quite well educated and all those things. But I can understand that people with significant impairments might struggle with it.”
“Immensely, it was a lot easier having a human explain it to me than trying to read it off a page. I’m a very visual learner. So slabs and slabs of text can be a bit much for me.”
Concern for clinician time (3)
“I know they’ve [Clinician] got other appointments and [so] I’ll kind of wind it up for her.”
Feelings during feedback
Comfortable/supported (1)
Emotional/overwhelmed (1)
Hard to ask questions/don’t want to look foolish (2)
Didn’t know what to expect from feedback (1)
“And they [Clinician] was very kind and empathetic about, you know about it.”
“There was a lot of emotions…”
“And, you know, I don’t want to ask something in case it’s obvious, or I might look like a bit of a fool.”
“And then I wouldn’t ask again, I would have just gone, and look[ed] like an idiot.”
“I didn’t know actually what to expect from the feedback”
Emotional reaction to diagnosis
Grief, regret at late diagnosis, wish I had known earlier (5)
Felt lost (3)
“There was certainly a lot of, kind of sadness at the start for me, and a lot of regret, and then kind of a lot of, "oh, I’m off the hook, I couldn’t help that". But then also "why didn’t I know earlier?" It can be like a real, a lot of turmoil around what you feel.”
Processed diagnosis with others (2)
” But the best thing that I found was actually talking to someone else on the spectrum…”
Gender differences with Autism features (2)
“And also, they explained that my experience of being, presenting female, and not finding out until later, they expressed that that’s kind of common, especially in my age group…”
Follow-up admission
Planned a follow-up admission to learn more (1)
Time between admissions useful to process diagnosis (1)
2nd d admission focussed on looking to the future (1)
“This wasn’t like "You’re autistic bye!" But, but I’d actively sought readmission, which then happened, I think so [date of admission], and that six, seven months later, just to come back and talk about it a little bit. And that, those seven months were really important for me because I was able to start to use this new apparatus that I received this diagnosis”
Consumer consultant consultation
Utilised consumer consultant (2)
Consumer consultant did not know about Autism (1)
“So, I think if there was like, because I did try to reach out to the, what do they call it? I think their name is [Consumer Liaison Name]. I forget what they’re called. They’re like people who have been to the hospital. [Name] didn’t know too much about it.”
“It would probably be that maybe if some of the nurses were a little bit more aware of Autism, and also the student nurses especially, because I had some times where some nurses told me that I’d get better. And then like, I’d be more cured. "It’s okay, I’m sure it’s hard for you, but you will get better". And it’s like, it doesn’t make sense, because it’s a neurological thing. And that was kind of like frustrating, a bit.”
Hidden Diagnosis (2)
“I don’t think I’ve ever met a nurse that knows that, one, I have ASD, or two, how to handle that. Because, yeah, they don’t know how to handle when I’m having a meltdown or anything like that
Noise (3)
“I feel like there should be like a quiet lounge room where autistic people can go to.”
Overwhelm (5)
“Because I personally don’t tend to leave my room because it’s very overwhelming…”
Rooms (2)
“Room change requests should be prioritised for people with ASD.”
Autism Navigator/Peer support (2)
“I think having a peer support session as well would be good.”
Groups (4)
“[The] programme doesn’t have any classes on it [Autism].”
Outreach (3)
“Outreach was one of the most helpful things for me getting through COVID.”
LQBTIQA + (3)
“Maybe if there was kind of a, some sort of relationship that was developed with maybe the pride centre…”
Appendix 4
Example Feedback Sheet.
Neuropsychology Feedback Sheet.
[Patient Name & Identification Details].
You recently participated in neuropsychology testing that assessed your thinking skills in different areas. The main purpose was to assess for Autism. The results indicated that you have a number personal strengths:
Vocabulary This is your knowledge of word meanings. On this task you were required to provide definitions for a list of words that increased in difficulty. You exhibited extremely well developed skills on this task.
Symbol searching This task required you to visually match symbols quickly, across a line. It relies on visual scanning and rapid visual decision making. You were fast and accurate when completing this activity.
Verbal attention This was assessed using the digit-span task where you were required to listen to, and then repeat back, a string of numbers in order. It assesses how much basic verbal information you can take in, in one go.
Construction This task involved putting together coloured blocks to make a series of patterns, and requires visual-spatial skills and problem solving.
Story memory You were asked to listen to two verbally presented stories and then to repeat back the information from your memory, immediately after they had been read, and then again 20 minutes later. You did well taking in the stories and then recalling and retelling them, after a delay.
Category-switching verbal fluency This task assessed your ability to think of words quickly from specific categories and switch back of forth between the two (e.g. vegetables-vehicles) during a 60 second period. It requires mental flexibility and word finding skills.
On a few tasks, your skills were not quite as strong as your other skills:
Completing geometric patterns On another activity you were required to complete the missing piece from a series of visual patterns. This task requires visual sequential reasoning.
Coding speed This task involved matching numbers and symbols and re-drawing the symbols as quickly as you could over a two-minute time period.
Delayed recall of a copied complex shape You were asked to copy a complex geometric shape and then to recall and redraw the shape, from your memory, after 3 minute and 30-minute time delays. At the 30-minute mark you were not as strong in recall the smaller details from the shape.
No areas of significant deficit were identified, and as indicated above, you have many very strong skills. Overall, your profile was “up and down” sometimes referred to as a “spikey” profile with a number of very strong skills, mixed with others that weren’t quite as strong.
In addition to the cognitive tasks, you and your partner filled in a number of questionnaires, and you went through a lot of interview questions with me. A summary of these results is provided below:
Mood assessment indicated you were experiencing high levels of symptoms of Depression, and moderate levels of symptoms of Stress at the time of the assessment.
On an Autism questionnaire your responses placed you in a range consistent with autism. This including both social and communication features, and those of behavior and interests. Your partner’s ratings were similar in nature, but not as pronounced as yours, particularly in the area of behavior and interests.
Your responses on an Autism criteria interview were also consistent with Autism, and it appears that the majority of these features are long-standing. Overall, there is sufficient evidence to confirm a diagnosis of Autism Spectrum Disorder (ASD), Level 1. Some of the features included that you prefer meaningful interactions, over small-talk. You also prefer interacting in a small group and focusing on the content of what is being said (rather than facial expression or gesture). Additionally, you like to have time to “re-charge” your social battery, after you have done a lot of socializing, and feel your social battery can run low, more often than others. You reported that you like to stick to a similar daily routine, and prefer to go to familiar, known places, such as you favorite café in the city. You do not like tight clothing, bright lighting or loud noise, preferencing comfy soft clothes, low lighting environments and peaceful calm spaces. You also have strong passion areas of interest, including classic cars, and ancient Greece. You enjoy interacting with information on these topics and gathering information to extend your knowledge base.
People who have Autism can process social information in a different way to others, may not prefer to interact in the same way, and may use social cues differently to neurotypical people use when they interact. They can also process emotions in a different way– sometimes finding them overwhelming, and have sensory processing differences (sensitivities, sensation seeking, or under-responsiveness). People with Autism also tend to feel more comfortable with routines, may have repetitive self-soothing behaviours (finger tapping/waving, leg bouncing etc.), and are often very skilled at highly researching topics in a lot of detail and recalling many facts about their areas of interest. It’s important to note that no two people with Autism are exactly the same, that is why it is called a ‘spectrum’.
As discussed at the assessment, many professionals, including myself, now view Autism as a part of neurodiversity, rather than a disorder. This is because it is a condition that causes differences in the neural structure of the brain and has correlation with a number of other conditions where there is also neurodiversity. There many positive traits that people on the spectrum show, and it is just as important to be aware of these, as it is of any areas of difficulty. Often what ‘disables’ a person with Autism is society expecting them to confirm to a world set up for neurotypical people. Rather, than a society that accepts neurodiversity and caters for, and celebrates, these differences. I recommend that you do some further reading in Autism, potentially join an adult Autism support group, and discuss the diagnosis further with your treating team. I have provided some further information on this, below.
Autism Resources.
Websites/Organisations:
[Several peak body Autism organisations in area provided, several social groups, several helpful websites].
Books:
[Several books that present Autism from a neurodiversity and/or neurotype perspective, and align with diagnosis affirming care, books relevant for people with Autism and particular gender identities, including women, non-binary and transgender people].
Cognitive Strategies.
The following strategies have been provided, based on the challenges you reported experiencing in your daily life, with your thinking skills:
To help improve your concentration, take frequent, short rest breaks when conducting longer activities. Stop the activity and go and get a drink, or go for a short walk around the house, and then come back and resume the activity. This will help to refresh your focus and might reduce the chance of you making mistakes, due to fluctuations in your concentration.
Also, be aware that you do not have to complete long tasks all in one go. Divide the task up into sections, focus on one section at a time. Take a break between each section. Don’t push yourself to get things done, all in one go, if you are feeling tired or stressed.
Break down large tasks into smaller components, so that they seem less overwhelming. Focus on just one component with at a time, bargain with yourself when you will get that component started, and set an alarm to go off at that time. Take frequent short rest breaks throughout, to refresh your focus. When you have finished one component. Take and break and then decide if you have enough energy to do the next part, or if you should leave this to another session.
To help with planning an organisation– do a “brain dump” of everything that needs to be done, by getting it all done on the page. In this stage don’t worry about the correct order of things. Later, when you have all your ideas/needs down, put things in the most logical order, depending on what it makes sense to start with, you can then work your way through systematically.
To help yourself keep track of your possessions designate a particular spot at home, and try to place your important possessions there ever time your come home (e.g. keys, wallet, phone). Get a basket or container that is specific for this purpose and label it with “phone, keys, wallet”. Work hard over several weeks, when you first get home, to place your items in the container every time you get home. This will then become a habit over time.
“People with neurodiversity” or “person with neurodiversity” as used in the study refers to people with neurodevelopmental conditions, such autism and ADHD. Some people with neurodevelopmental conditions prefer to be referred to as “neurodivergent”. We believe this is an equally valid identification term. However, it is not the preference of all of the clients we worked with, and thus we have utilised a term more broadly accepted by our client group at the time this study was conducted.
Subsequent methodological updates by Braun & Clarke (2021) suggest saturation analysis is less relevant for use when conducted thematic analysis. However, this update was not published at the time this study was conducted, and thus, we have described our procedure true to the methodology we did undertake at the time, in the reporting of this paper. Similarly, the thematic analysis approach follows the Braun & Clarke (2013) methodology from which it was designed, rather than the subsequent 2021 update of their approach.
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