Development and Initial Utility of The Autism Clin
Development and Initial Utility of The Autism Clin
net/publication/339576896
Development and Initial Utility of the Autism Clinical Interview for Adults: A
New Adult Autism Diagnostic Measure
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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.
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.
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.
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 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
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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