Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom
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A total of 128 adults with high-functioning autism spectrum disorders were surveyed concerning the process they went through to obtain their diagnosis and the subsequent support they received. Results suggested that routes to diagnosis were quite heterogeneous and overall levels of satisfaction with the diagnostic process were mixed; 40 % of respondents were 'very/quite' dissatisfied, whilst 47 % were 'very/quite' satisfied. The extent of delays, number of professionals seen, quality of information given at diagnosis and levels of post-diagnostic support predicted overall satisfaction with the diagnostic process. Important areas and suggestions for improvement were noted for all stages of the diagnostic pathway. Respondents also displayed above average levels of depressed mood and anxiety, with greater support being requested in this area.
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Referral via general practitioners and mainstream mental health professionals were common pathways to adult autism diagnosis.
“Referral via general practitioners (GP) and mainstream mental health professionals were common pathways to adult autism diagnosis, as shown by data from self-report surveys (Jones et al., 2014) and diagnostic service records (Happé et al., 2016; Hofvander et al., 2009; Nydén et al., 2010; Wilson et al., 2016).”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Jones et al., 2014
There is often a gap of several years between first concern, professional consultation, and diagnosis.
“Due to these issues, there is often a gap of several years between first concern, professional consultation, and diagnosis (Begeer et al., 2013; Jones et al., 2014).”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Jones et al., 2014
Adults and parents described that professionals not recognising signs of autism and multiple referrals resulted in delays before and during assessment.
“Adults and parents described that professionals not recognising signs of autism and multiple referrals resulted in delays before and during assessment (Bargiela et al., 2016; Griffith et al., 2012; Jones et al., 2014; Raymond-Barker et al., 2018).”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Jones et al., 2014
Diagnosticians were often unable to provide follow-up due to pressure and lack of resources, leaving clients dissatisfied with the conclusion of their diagnosis experience.
“Diagnosticians were often unable to provide follow-up due to pressure and lack of resources (Crane et al., 2018), leaving clients dissatisfied with the conclusion of their diagnosis experience (Jones et al., 2014).”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Jones et al., 2014
Over 50% of adults in a UK survey had expected the diagnosis, but others described it as a surprise.
“Over 50% of adults in a UK survey had expected the diagnosis (Jones et al., 2014), but others described it as a surprise (Crane et al., 2018).”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Jones et al., 2014
A UK survey found that autistic adults' preferred forms of support were counselling (44.5%), social skills training (36.7%), and support groups (35.9%).
“A UK survey found that autistic adults' preferred forms of support were counselling (44.5%), social skills training (36.7%), and support groups (35.9%) (Jones et al., 2014).”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Jones et al., 2014
Longer duration was associated with reduced satisfaction.
“Efficient diagnostic processes benefit adults undergoing autism assessment as longer duration was associated with reduced satisfaction (Jones et al., 2014).”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Jones et al., 2014
Efficient diagnostic processes benefit adults undergoing autism assessment.
“Efficient diagnostic processes benefit adults undergoing autism assessment as longer duration was associated with reduced satisfaction (Jones et al., 2014).”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Jones et al., 2014
Twenty studies examined the pathways and processes of adult autism diagnosis from service user and provider perspectives, as well as the impact of DSM-5 criteria on diagnosis.
“Twenty studies examined the pathways and processes of adult autism diagnosis from service user (e.g. Jones et al., 2014) and provider (e.g. Rutherford et al., 2018) perspectives, as well as the impact of DSM-5 criteria on diagnosis (e.g. Wilson et al., 2013).”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Jones et al., 2014
Adults often did not receive post-diagnosis support but would prefer counselling.
“Adults often did not receive post-diagnosis support but would prefer counselling.”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Jones et al. (2014)
Adults experienced a delay of 3 years between initial concern and first consultation.
“Adults experienced a delay of 3 years between initial concern and first consultation”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Jones et al. (2014)
The majority agreed with their diagnosis, but emotional reactions were mixed.
“Majority agreed with their diagnosis, but emotional reactions were mixed.”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Jones et al. (2014)
They experienced 2 more years before receiving a diagnosis.
“and 2 more years before receiving a diagnosis”
From Diagnosis of autism in adulthood: A scoping review (2020) · cites this paper as Jones et al. (2014)
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- Authors
- Jones, L., Goddard, L., Hill, E. L., Henry, L. A., & Crane, L.
- Affiliations
- Goldsmiths University of London (GB)
- City, University of London (GB)
- Corresponding author
- Crane, Laura
- Venue
- Journal of Autism and Developmental Disorders
- Published
- 2014-06-11
- Volume
- 44
- Issue
- 12
- Pages
- 3033-3044
- ISSN
- 0162-3257 (ISSN-L)
- 1573-3432
- OpenAlex
- W2032693111
- Cited by
- 204
- References
- 53
- Citations by year
- 2026: 11 · 2025: 25 · 2024: 21 · 2023: 24 · 2022: 22 · 2021: 28 · 2020: 19 · 2019: 16 · 2018: 15 · 2017: 6 · 2016: 8 · 2015: 9
- FWCI
- 4.28
- Type
- journal article
- Language
- en
- Open access
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Journal of Autism and Developmental Disorders (publishedVersion)
- PubMed (publishedVersion)
- Goldsmiths (University of London) (acceptedVersion)
- City Research Online (City University London) (submittedVersion)
- UCL Discovery (University College London) (submittedVersion)
- University of Birmingham Research Portal (University of Birmingham) (submittedVersion)
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Social Sciences › Psychology › Clinical Psychology › Psychology and Mental Health
- Keywords
- autism spectrum disorder, high-functioning autism, diagnostic process, delayed diagnosis, patient satisfaction, post-diagnostic support, mental health, depression, anxiety, autistic adults
- MeSH terms
- Adolescent, Adult, Aged, Anxiety, Child Development Disorders, Pervasive, Data Collection, Depression, Female, United Kingdom, Humans, Male, Middle Aged, Patient Satisfaction, Young Adult
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