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doi:10.1111/jpc.12832
ORIGINAL ARTICLE
Aim: This paper describes the Toddlers at Risk of Autism Clinic (TRAC), which utilises the Social Attention and Communication Study (SACS)
and/or Autism Detection in Early Childhood (ADEC) play-based assessments to facilitate the early diagnosis of autism.
Methods: A retrospective audit was conducted of all 42 children assessed over a 3-year period in the TRAC. A semi-structured interview and
play-based assessment (SACS and ADEC) were used to aid experienced clinicians in diagnosing autism. Intervention was recommended, and
families were routinely followed up. Analysis was conducted on the tools used, the outcomes of assessment, diagnosis and stability of diagnosis
on follow-up.
Results: During this period, 35 boys and 7 girls were assessed, with a mean age of 25 months. The average waiting time for clinic was 11.6
weeks. Twenty-ve patients were diagnosed with autism; 90.5% of toddlers given an initial diagnosis retained that diagnosis at follow-up. Out of
the 17 children who were not diagnosed with autism in the TRAC, one child was later diagnosed with autism.
Conclusion: Experienced clinicians can use the SACS and/or ADEC to assist with a Diagnostic and Statistical Manual diagnosis of autism in
toddlers.
Key words: autism; autistic disorder; child development; early diagnosis; early intervention.
A change in the presentation of a young child with autism has symptoms relating to autism or developmental delay are
been associated with factors12 such as access to early interven- referred to the service by parents, educators, allied health pro-
tion, the childs capacity and personal attributes (e.g. tempera- fessionals and doctors. The diagnosis of autism has been tradi-
ment, language ability, IQ, imitation and social interaction, tionally made by comprehensive multidisciplinary diagnostic
motor and adaptive skills), and probably genetic autism sub- team assessment (CMDA). In a CMDA, a developmental pae-
types. Several studies have shown that autism symptom severity diatrician and psychologist (with support from a social worker
has little predictive power; ongoing review is therefore an or special educator as required) gather information from parents
essential part of management.2,16 and early intervention providers; it also includes a physical
examination, play-based child interview and psychometric
Assessment Process assessment. This process, including feedback, and the lengthy
detailed report takes a combined time of approximately 12 staff
The gold standard for autism diagnosis is a multi-disciplinary hours. Since 2010, all children under 2.5 years with symptoms
assessment by a designated autism team conducting a detailed of autism were referred to our Toddlers at Risk of Autism Clinic
profile of the child and diagnosing autism according to the (TRAC), as opposed to CMDA.
DSM.17,18 The TRAC aimed to expedite an autism assessment for tod-
The Autism Diagnostic Observation Schedule Toddler Model dlers. Previously, families were on a waiting list of many months
(ADOS-T) was developed in 2009 specifically for autism diag- to have a CMDA. This long wait for an appointment was per-
nosis in children under 30 months.19 The ADOS-T has been ceived by clinicians to increase parental anxiety and delay access
shown to have good diagnostic validity; however, it is costly, to optimal early intervention, including the Governments
takes a significant amount of time to perform and score, and it Helping Children with Autism funding.
requires extensive training to ensure reliability.19,20
The Social Attention and Communication Study (2010)
(SACS) aimed to identify key markers of autism in 12- to
Aims
24-month-old children. The SACS is a semi-structured play- This study aims to describe the TRAC as a model of assessment;
based assessment that lists a series of social and communicative to explore the versatility of the SACS and ADEC as diagnostic
behaviours together with a list of behaviours of concern related aids; and to evaluate the overall stability of diagnosis.
to autism. The clinician scores on the presence of these behav-
iours and arrives at a not at risk or at risk outcome. Designed
as an ongoing primary screening tool to be used by community Methods
nurses, it has a positive predictive value of 81%.21 The SACS is TRAC
free to access.22
The Autism Detection in Early Childhood Manual (ADEC) The SACS and ADEC tools were considered most useful for the
was developed for use by allied health professionals as a psy- TRAC, in view of their cost, availability and versatility.
chometrically valid, self-taught screening tool for identifying the Both tools are validated for use with children less than 24
risk of autism in pre-verbal children aged from 1 to 3 years.23,24 months, and both were used in our cohort in order to compare
It measures the childs responses to social initiations and facili- their usefulness. In children 2436 months, only the ADEC
tated play, and reports on these responses, which can give a could be used. This is the only clinic the authors are aware of
basis for targeted intervention. Scoring puts the child into a risk that utilises these tools to facilitate a definitive diagnosis of
category for autism: low, moderate, high or very high risk. autism.
The TRAC is staffed by a developmental paediatrician (or an
Early Intervention experienced paediatric fellow) and an allied health professional
(speech therapist or autism early intervention educator). Infor-
Access to targeted early intervention may affect the consequent mation from all other professionals working with the child and
diagnosis. Children who received early intervention may show family is obtained by written correspondence or telephone
increased capacity to perform on standardised tests of IQ and interview during the pre-clinic intake process and later inte-
improved adaptive functioning, and were more likely to have grated into the assessment. In the clinic, the family interview is
their diagnosis changed from autistic disorder to pervasive conducted by the doctor while the SACS/ADEC are performed
developmental disorder.2527 by the allied health clinician in the same room. The team then
Research is not clear on the optimal age for early intervention break for approximately 20 min to evaluate their findings and
or the best type of intervention.28,29 Randomised control trials come to a diagnosis according to the DSM (IV or 5) and prepare
are challenging in this population in view of the huge variation for feedback. Feedback, including a diagnosis, is given in a
in individual symptoms, treatment schedules and developmen- sensitive, family-centred approach. Information on autism
tal patterns.15,16 (print/DVD/websites) is given to the family as well as individ-
ually prepared recommendations on childcare, therapy, funding
Background to the Study options and medical investigations.
After the TRAC, all families are offered phone and email
The Kogarah Diagnostic Assessment Service (DAS) is a public contact support by a clinician as well as being referred to a
tertiary developmental service with a large geographically con- 2-hour group parent information session, which is run monthly.
tained catchment within south-eastern Sydney. Children with It supports families with practical information to build their
capacity and confidence in advocating for their child, as well as two using the SACS alone. Three children did not have a SACS
negotiating through services. A few families (20%) require a or ADEC locatable in their patient records.
second appointment within 2 months of the TRAC. Reasons for One hundred per cent of patients with a high-risk or very
this second clinic include persistent distress with the diagnosis, high-risk score on the ADEC also had an at-risk SACS score.
vulnerability due to social/CALD background, inability to attend Twenty-one of 25 children (84%) with a high-risk score on the
the parent information session or a need to involve other family SACS and/or ADEC were given a clinical autism diagnosis (see
members to support them in the care of the child. Time required Table 2). The four children not diagnosed with autism in the
for this TRAC process is up to 30 min pre-clinic preparation, up TRAC in spite of a high-risk SACS and/or ADEC were diag-
to 2 hours face to face and approximately 20 min of post-clinic nosed with global developmental delay, language delay and two
communication (excluding attendance of the group parent children with delay in social communication. One of these latter
information session). patients was diagnosed with autism in a follow-up clinic.
All families are scheduled for a routine follow-up assessment A low-risk score on the SACS and/or ADEC resulted in a
612 months later, and those diagnosed with autism or devel- clinical autism diagnosis in one out of 13 children. This child
opmental delay are scheduled for CMDA. While the doctor in subsequently had his autism diagnosis removed at follow-up.
the CMDA may have also been present at the TRAC, the devel- Overall, when using a positive result in either the SACS or the
opmental psychologist would be new to the child. At the point ADEC as a diagnostic test for autism, there is a sensitivity of
of CMDA, the child and family have had the benefit of 612 95.5%, specificity of 75%, a positive predictive value of 84%
months of therapy targeted specifically at remediating the and a negative predictive value of 92.3%.
symptoms of autism. The three children who had the SACS/ADEC information
A retrospective audit was carried out on all children attending missing from their file were all diagnosed with autism.
the TRAC between August 2010 and April 2014 through review Five out of the 42 children also required a Griffiths Mental
of the Kogarah DAS patient database. The information obtained Development Scale30 conducted to facilitate the TRAC evalu-
was collated on a Microsoft Excel (Microsoft, Redmond, WA, ation for autism.
USA) spreadsheet and the Statistical Package for Social Sciences
(IBM, New York, NY, USA) was used to help with statistical Diagnostic stability
analysis. Ethics approval was obtained for this study.
Twenty-five out of the 42 patients seen (59.5%) were diagnosed
with autism (four females, 21 males). This gender ratio is within
Results
the range of general Australian statistics.31,32
There were 42 children assessed between August 2010 and April Thirty-four of the 42 children had follow-up via face-to-face
2014. Seven were girls and 35 were boys. Eight children had a consultation (or a phone discussion); phone follow-up was only
sibling with autism. The mean age of the children assessed was conducted when the family asked not to come in as they felt
25 months (range 1530 months, median = 26 months, stand- there was no need, given they were satisfied with the findings
ard deviation (SD) = 3.8). Families came from a range of back- and to come to a clinic was imposing on them. Eight patients are
grounds, including Indigenous and Caucasian Australians, due for their follow-up appointment after this paper was
Greek, Polish, Lebanese, Slovakian and Czech. Children were written.
referred by a paediatrician (50%), their parents (23.8%) or from Of the 25 children diagnosed with autism in the TRAC, 21
another source (see Table 1). The mean waiting time following have had follow-up (the other four were scheduled for appoint-
referral was 11.6 weeks (range 231 weeks, median = 10 ments after this paper was written). Nineteen out of 21 followed
weeks). Comparable wait times for our CMDA clinic was up (90.5%) had the autism diagnosis re-confirmed at their
approximately 2040 weeks. CMDA or via clinical reassessment. Two out of 21 children
(9.5%) who were diagnosed with autism at the TRAC had their
Assessment tools
diagnosis removed on follow-up appointment.
Out of the 42 children seen in the TRAC, 22 were assessed using Only one of the 17 children not diagnosed with autism in the
the SACS and ADEC concomitantly; 15 using ADEC alone; and TRAC was later diagnosed with autism. At the time of the initial
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