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Development and Initial Utility of The Autism Clin

The document discusses the development and initial utility of the Autism Clinical Interview for Adults (ACIA), a new diagnostic measure aimed at improving autism assessments for adults. The study involved interviews with 17 autistic adults and their relatives, demonstrating that the ACIA effectively identifies core autism characteristics and co-occurring conditions. Initial findings suggest the ACIA's potential for clinical use, with plans for further validation and testing to enhance its acceptability and utility in autism diagnostic services.

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25 views7 pages

Development and Initial Utility of The Autism Clin

The document discusses the development and initial utility of the Autism Clinical Interview for Adults (ACIA), a new diagnostic measure aimed at improving autism assessments for adults. The study involved interviews with 17 autistic adults and their relatives, demonstrating that the ACIA effectively identifies core autism characteristics and co-occurring conditions. Initial findings suggest the ACIA's potential for clinical use, with plans for further validation and testing to enhance its acceptability and utility in autism diagnostic services.

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Development and Initial Utility of the Autism Clinical Interview for Adults: A
New Adult Autism Diagnostic Measure

Article in Autism in Adulthood · February 2020


DOI: 10.1089/aut.2019.0052

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AUTISM IN ADULTHOOD
Volume 2, Number 1, 2020
ª Mary Ann Liebert, Inc.
DOI: 10.1089/aut.2019.0052

Development and Initial Utility of the Autism


Clinical Interview for Adults:
A New Adult Autism Diagnostic Measure

Sarah Wigham, PhD,1 Barry Ingham, DClinPsy,1,2 Ann Le Couteur, FRCPsych,1


Tom Berney, FRCPsych,1 Ian Ensum, DClinPsy,3 and Jeremy R. Parr, MD1,2

Abstract
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Background: Clinicians use diagnostic interviews to help them gather and organize information collected in the
assessment of autism. Most instruments are developed for children and few measures have been developed that
are reliable, valid, and appropriate for use in adulthood. This is a significant barrier to providing a high-quality,
timely service for adults. The aim of this development study was to assess the initial utility of the recently
developed Autism Clinical Interview for Adults (ACIA) for use in autism diagnostic clinical services before
further large-scale testing and evaluation.
Methods: We invited adults who had received an autism spectrum diagnosis through a U.K. National Health
Service (NHS) multidisciplinary adult autism assessment to participate. Seventeen autistic adults (8 women and
9 men, mean age of 37 years) and four relatives agreed to an interview. The semistructured ACIA interview
comprises subject and informant versions, and a self-report preinterview questionnaire. In combination, the
ACIA components cover topics relevant to autism and co-occurring condition assessment. We evaluated
clinical utility and content validity via comparison with the Diagnostic and Statistical Manual Fifth Edition
(DSM-5) and NHS diagnostic reports.
Results: Each interview took between 60 and 90 minutes to complete. Comparison with DSM-5 and the NHS
autism diagnostic report demonstrated that the ACIA accurately identified information on core autism char-
acteristics needed for a diagnosis, and identified co-occurring conditions. In response to participant suggestions
we revised the interview.
Conclusions: These initial findings support the potential utility and validity of the ACIA for adult autism diagnostic
clinical services. Further investigations of the acceptability, utility, and validity of this interview are planned.

Keywords: adult, autism, ASD, diagnosis, Diagnostic and Statistical Manual Fifth Edition (DSM-5), interview

Lay Summary
Why was this study done?
Clinicians use diagnostic interviews during assessments to help gather and record information both from a
person suspected to be on the autism spectrum and from an informant (someone who knows them well).
However, most autism diagnostic interviews were originally developed for assessing autism in childhood, and
few have been developed for use with adults. The lack of diagnostic interviews developed specifically for use
with adults makes it difficult to provide a good-quality, consistent assessment.

What was the purpose of this study?


The study tested a new semistructured diagnostic interview called the Autism Clinical Interview for Adults
(ACIA). The ACIA includes a questionnaire for people to complete before their interview. This is followed by

1
Population Health Sciences Institute, Faculty of Medical Science, Newcastle University, Newcastle upon Tyne, United Kingdom.
2
Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, United Kingdom.
3
Avon and Wiltshire Mental Health Partnership NHS Trust, Bristol, United Kingdom.

42
THE AUTISM CLINICAL INTERVIEW FOR ADULTS 43

an interview that can be conducted with the person themselves and a separate version to be used with someone
who knows them well (if permitted). The interview covers autism traits, strengths and difficulties, and co-
occurring physical and mental health conditions. We wanted to find out if the interview is useful for autism
diagnostic services by comparing information collected using the ACIA with clinical diagnostic reports.

What did the researchers do?


We invited people who had received a diagnosis of autism from a U.K. National Health Service (NHS)
assessment to take part in an interview. We asked them if we could also interview someone who knew them
well, and if we could compare their NHS autism diagnostic report with information gathered using the ACIA.

What were the results of the study?


Seventeen autistic adults (average age 37 years; 8 women and 9 men) and 4 relatives/supporters (2 parents, a
spouse, and a cohabiting partner) agreed to be interviewed. Each interview took 60 to 90 minutes to complete.
A comparison with clinical reports showed the ACIA identified autism traits relevant for a diagnosis, as well as
co-occurring conditions (e.g., depression). Participants suggested some ways to improve the interview, and
revisions were made.
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What do these findings add to what is already known?


There are few diagnostic interviews designed specifically for use with adults seeking a diagnosis of autism. The
findings from this study show that the ACIA is a promising new interview.

What are the potential weaknesses of the study?


The study is small. However, it is important to run an initial test study before involving more people and
resources in larger studies. Building on these results, we aim to undertake further studies on the acceptability
and usefulness of the new interview with a larger number of people, including people from a range of
backgrounds.

How will these findings help autistic people now or in the future?
The ACIA has potential for use in adult autism clinical assessment services and as a resource for research and
training. The semistructured format helps gather important and relevant information, and the interview length
supports feasibility in clinical and research settings. The ACIA has the potential to streamline autism assess-
ments and speed up the process for adults who currently wait a long time for their diagnosis.

Introduction interview.14–16 This report describes the development work


and findings from a small study assessing utility of the Aut-

T here are few reliable tools to aid clinicians in the


diagnosis of autism in adults, representing a gap in re-
sources.1–3 Existing diagnostic measures have limitations
ism Clinical Interview for Adults (ACIA) for adult autism
diagnostic services before undertaking further testing.

when used in the presence of co-occurring conditions, Methods


which are common in adults suspected of being on the au-
Interview development
tism spectrum.4–6 Assessment may also need to proceed
without information from a developmental history, which We adapted the FHI to create the ACIA during multiple
many diagnostic tools rely upon.7–9 Diagnostic tools also investigator meetings.17 The investigators included an au-
need to be structured and sufficiently detailed to be accurate tistic adult, adult autism diagnostic service clinicians, and
and efficient for use in specialist and nonspecialist assess- clinical researchers. Interview content and format were iter-
ment settings and brief enough given service and resource atively refined and modified informed by Diagnostic and
constraints.8,10–13 Statistical Manual Fifth Edition (DSM-5) criteria.18
The Family History Interview (FHI) was designed to The ACIA has subject and informant versions and three
quantify the broader autism phenotype (traits related to the components. Clients complete the preinterview questionnaire
autism spectrum).14,15 The FHI characterizes social com- (PIQ) before their face-to-face interview to provide infor-
munication and repetitive behaviors to calculate a standard- mation about demographic characteristics, relationships,
ized score of subthreshold, autism spectrum traits. The FHI living arrangements, and medical history. This information
was found to be a reliable measure of the broader autism facilitates clients and clinicians preparing for the assessment
phenotype.14,15 Building on research experience of using the and informs the diagnostic process about the wider context,
FHI with adults with a wide range of strengths and impair- including physical and mental health, as well as social and
ments, we adapted the FHI to create a new autism diagnostic family situation. The semistructured main interview (MI) has
44 WIGHAM ET AL.

mandatory prompts guiding a systematic approach, and op- 16 co-occurring condition items. A second research team
tional prompts allowing further clinical enquiry.19 The MI member also blind to diagnostic report content independently
covers autism characteristics (22-core items) used to calcu- scored and coded 13 subject interviews (76%), which we
late social communication and interaction (SCI) and re- used to calculate inter-rater agreement. We then compared
stricted and repetitive behavior (RRB) scores corresponding information on the coding frames with information in the
to DSM-5 domains.18 In addition, there are questions NHS reports. The interviewer asked all participants about any
covering wider topics, including activities, occupation, and comments on the interview and recorded responses. We used
aspirations. Finally, a co-occurring conditions interview descriptive statistics to analyze the interview data, and used
(6 items on genetic, neurodevelopmental, and physical health content analysis to code and group participant comments.20
conditions and 10 items on mental health) covers conditions Wales-5 Research Ethics Committee gave the study a fa-
associated with autism and a framework to collect informa- vorable opinion (reference: 17/WA/0188).
tion before any additional diagnoses. Information gathered is
coded at item-level as ‘‘0’’ (no difficulties), ‘‘1’’ (difficul-
ties), or ‘‘2’’ (frequent difficulties/impact), and allows as- Results
sessment of characteristics from child and adulthood. Seventeen adults who had received a diagnosis of autism
spectrum disorder completed the subject ACIA. Four par-
ticipants’ relatives completed the informant version.
Piloting
Participants took 10–20 minutes to complete the PIQ and
Study inclusion criteria were adults (age 18 years or older) none requested help. Table 1 shows information gathered
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who had received an autism spectrum diagnosis via a U.K. using the PIQ. Each subject and informant MI took 60–90
National Health Service (NHS) multidisciplinary team as- minutes to complete. Inter-rater agreement on coding for the
sessment and a relative. The NHS service provided study 22 autism items was 95% and 98% for the 16 co-occurring
information to potential participants who had received an conditions. There was some disagreement on items relating to
autism spectrum diagnosis within the last 5 years. Interested the circumscribed nature and intensity of interests.
participants contacted the research team. Following consent, Because we have not yet developed an ACIA algorithm,
an ACIA-trained researcher arranged face-to-face interviews we calculated total SCI and RRB scores using the 22 MI core
with participants, at a location of their choice. Participants autism items (Table 2a). We then arranged the 22 items into
consented to the NHS service providing the research team preliminary groups corresponding to DSM-5 subdomains.
with a copy of their autism diagnostic report. The researcher We totaled participant scores for MI items in each group, and
was aware of inclusion criteria, but remained blind to diag- calculated mean scores. DSM-5 criteria for a diagnosis of
nostic report content until after all interviews were con- autism require difficulty present across 3 SCI and q2 RRB
ducted. The interviewer scored information gathered using subdomains.18 Comparing the MI item group mean total
the ACIA and mapped onto a coding frame the 22 autism and scores with the DSM-5 subdomains indicated that the MI

Table 1. Information on Participant Characteristics Gathered Using the Preinterview Questionnaire,


Main Interview, and Co-Occurring Conditions Interview
Participant characteristics (n = 17)
Preinterview questionnaire Co-occurring conditions interview
Female 8 (47%) Self-reported genetic, neurodevelopmental,
Male 9 and physical health conditions
Age (years) Chronic physical health conditions 12 (71%)
Mean (SD) 37 (12) Attention-deficit/hyperactivity disorder 2 (12%)
Motor co-ordination problems 8 (47%)
Range 20–66 Eating problems 3 (18%)
Main interview (subject) Epilepsy 1 (6%)
Sleep problems 12 (71%)
Education and highest qualification Self-reported mental health conditions
Reported school literacy difficulties 8 (47%) Anxiety 12 (71%)
Educated to school leaving qualifications 7 (41%) Depression 11 (65%)
Further education or vocational qualifications 6 (35%) Bipolar disorder 2 (12%)
Educated to degree or postgraduate level 4 (24%) Affective disorder summary code 14 (82%)
Employment Obsessive/compulsive disorder 2 (12%)
Employed 16 (94%) Substance use disorder 4 (24%)
Professional or skilled occupation 9 (53%) Personality disorder 1 (6%)
Unemployed long term 1 (6%) Behaviors that challenge 4 (24%)
Eating disorder 0 (0%)
NHS report assessment method Other psychiatric conditions 1 (6%)
Bespoke MDT interview with two clinicians 17
ADOS21 4/17 Intellectual disabilitya 1 (male)
a
Information from the NHS report.
ADOS, Autism Diagnostic Observation Schedule; MDT, multidisciplinary team; NHS, National Health Service; SD, standard deviation.
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Table 2. ACIA Main Interview Total Scores and Comparison with DSM-5 Criteria for a Diagnosis of Autism
(a) ACIA MI total scores
Social communication and interaction (14 items) Restricted and repetitive behaviors (8 items)
Informant Informant mean
Subject mean (SD) (n = 17) mean (SD) (n = 4) Subject mean (SD) (n = 17) (SD) (n = 4)
Adulthood 17.35 (3.8) 15 (4.7) Adulthood 4.58 (1.8) 4.25 (2.6)
Childhood 14.17 (4.6) 16.5 (4.9)a Childhood 2.6 (1.4) 2.5 (0.7)a
Adult SCI subject mean score for women = 17; men = 18 Adult subject mean RRB score for women = 4; men = 5
Adult SCI subject mean scores for >37 years of age = 18; p37 years of age = 16 Adult subject mean RRB score for >37 years of age = 5; p37 years of age = 4

(b) How participant ACIA MI scores related to their DSM-5 criteria for a diagnosis of autism

DSM-5 subdomains and preliminary corresponding ACIA MI items

Social communication and interaction Restricted and repetitive behaviors

Subject Subject
DSM-5 subdomain18 ACIA MI items (adulthood) mean (SD)b DSM-5 subdomain18 ACIA MI items (adulthood) mean (SD)b

A1: Social/emotional 1. Pragmatics 6.8 (1.6) B1: stereotyped movements 1. Echolalia, idiosyncratic phrases 1.1 (0.7)

45
reciprocity deficits 2. Lack of interest in social or speech formal and stereotyped speech
chat/conversation 2. Ritualized patterns of verbal
3. Reciprocal quality of behavior, repetitive speech
chat/conversation 3. Stereotyped or repetitive motor
4. Social responsiveness patterns
5. Emotional cues and B2: insistence on sameness 4. Rigidity/insistence on sameness 1.3 (0.7)
responsiveness 5. Repetitive patterns of behavior,
rituals, and routines
A2: deficits in nonverbal 6. Nonverbal communication 5.7 (1.3) B3: highly restricted 6. Perfectionism 0.9 (0.5)
communication summary interests
7. Literal understanding
8. Demonstrativeness
9. Affection
A3: deficits in developing, 10. Aloof 3.6 (1.1) B4: hyper/hyporeactivity 7. Sensory experiences (positive 1.2 (0.7)
maintaining, and understanding 11. Social shared play and to sensory input or negative)
relationships imagination 8. Low sensory reactivity
12. Reciprocal, quality friendships
13. Reciprocal and intimate
relationships
14. Social behavior
a
No childhood total score for two participants whose informant was spouse or cohabitee.
b
Mean total scores for participants across the preliminary MI item groups; MI individual item scoring: 0 = no difficulties; 1 = difficulties; 2 = frequent difficulties/impact.
ACIA, Autism Clinical Interview for Adults; DSM-5, Diagnostic and Statistical Manual Fifth Edition; MI, main interview; SCI, social communication and interaction; RRB, restricted and repetitive
behavior.
46 WIGHAM ET AL.

did gather sufficient information to identify difficulties report ACIA gathers detail covering symptom domains re-
corresponding to 3 SCI and q2 RRB DSM-5 subdomains quired for a DSM-5 diagnosis of autism for participants when
(Table 2b). no informant was available. The ACIA may therefore be less
Methods of assessment used in the NHS diagnostic reports are reliant on developmental history compared with existing
shown in Table 1. Comparison of information from the subject tools—an advantage for some assessments.7,9 The informant
MI 22 autism items with that derived from the NHS diagnostic ACIA is another way of supporting clients who may be un-
report demonstrated strong agreement (95%). Differences in able to participate in an interview, including some with an
recording were noted for social behavior, social play in child- intellectual disability.22 Autism and intellectual disability
hood, intimacy/relationships, and repetitive speech. Agree- commonly co-occur, however, only one participant with an
ment on co-occurring conditions was 97%. Overall, the intellectual disability completed the subject ACIA, limiting
focus of the NHS diagnostic reports was on the diagnosis of our findings in this area.23–25 In future studies, improving
autism and compared with the ACIA there was more detail recruitment of informants will facilitate investigating psy-
on early development. In contrast, the ACIA systematically chometric properties of both informant and subject versions
collected more detailed information on sensory sensitiv- and comparing information gathered from each.
ities, interests/activities, and co-occurring conditions. The ACIA is a contribution to the currently small number
For 13 participants it was not possible to obtain an infor- of diagnostic tools available for adults.1–3 The semistructured
mant interview. Reasons given by these participants in- format can serve as an important guide for diagnostic accu-
cluded age and geographical distance to possible informants, racy in specialist settings, as well as in mainstream services
limited relationship with family members, and informants’ where skills in autism assessment may be limited, and where
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commitments. case recognition, autism diagnosis, and identification of co-


Six themes arose from content analysis of subject and in- occurring conditions may be particularly difficult.8,11,13 The
formant comments about the ACIA. These included diffi- study findings are an important first step in evaluating a new
culties in availability of informants (n = 5), item-wording semistructured interview that may well be useful for clinical
changes (n = 3), preference for a less structured interview assessment services for adults suspected of being on the au-
(n = 1), extra PIQ response options (n = 3), less repetition in tism spectrum, clinician training, and research.
the PIQ (n = 4), and format changes (n = 2) (e.g., adding a
timetable to structure daily activity questions and developing Acknowledgments
an informant PIQ). We subsequently made revisions, in-
We are grateful to the research participants who took part
cluding removing the term ‘‘pet-phrase’’ and shortening the
in this research and provided feedback at the end of the in-
PIQ to reduce repetition.
terviews. We also thank colleagues from Cumbria, North-
umberland, Tyne, and Wear NHS Adult Autism Assessment
Discussion service for supporting recruitment and the Research and
Development Department.
This small development study was an initial evaluation of
utility of the ACIA before undertaking further large-scale
testing. The findings show that the ACIA allows an inter- Authorship Confirmation Statement
viewer to gather detail on autism characteristics and co- J.R.P., B.I., T.B., and A.L. conceptualized the ACIA. All
occurring conditions relevant for a diagnostic assessment in authors contributed to the development of the ACIA. S.W.,
an efficient amount of time. ACIA agreement with DSM-5 J.R.P., and Ann Le Couteur wrote the article. J.R.P., B.I., Ian
and NHS reports was good supporting content validity. The Ensum, Tom Berney, and Ann Le Couteur contributed per-
findings suggest that the ACIA is a potentially useful resource spective on the clinical context. B.I. facilitated recruitment.
for diagnostic teams to aid the assessment process and sup- S.W. collected, analyzed, and interpreted the data. Ann Le
port further investigation of the psychometric properties of Couteur assisted with interpretation of data. Ian Ensum re-
the interview. viewed, commented, and provided feedback on draft articles.
A strength of the ACIA in contrast to existing diagnostic B.I. and Tom Berney reviewed, edited, and provided feed-
tools includes the breadth of information collected on autism back on the article. All coauthors have reviewed and ap-
characteristics and co-occurring conditions through infor- proved of the article before submission. The article has been
mant and self-report versions. There were similar scores submitted solely to this journal and is not published, in press,
between men and women, however, since we only included or submitted elsewhere.
those with a diagnosis, further research is needed to investi-
gate whether the ACIA accurately identifies individuals with
a range of demographic characteristics and co-occurring Author Disclosure Statement
conditions, including intellectual disability. Future qualita- No competing financial interests exist.
tive evaluation of acceptability with a diverse group of
stakeholders is also important.
Funding Information
All participants had already received a clinical diagnosis of
autism, so it was not possible to evaluate ACIA performance This study was cofunded by the U.K. autism research
in people without a diagnosis, or complete psychometric charity Autistica as part of the Newcastle University Autism
analyses, including assessment of sensitivity, specificity, or Life Course Development and Ageing research program and
severity thresholds. A limitation was that we could only Cumbria, Northumberland, Tyne, and Wear NHS Foundation
contact someone to complete the informant interview for a Trust Research Capability Funding. J.R.P. was awarded
minority of participants. Our findings suggest that the self- funding.
THE AUTISM CLINICAL INTERVIEW FOR ADULTS 47

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