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doi:10.1111/jpc.12832

ORIGINAL ARTICLE

Identifying autism early: The Toddlers at Risk of Autism

Clinic model
Tessa Davis, Deirdre Clifton and Con Papadopoulos
Kogarah Developmental Assessment Service, Sydney, New South Wales, Australia

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.

What is already known on this topic What this paper adds

1 Early intervention benets children with autism.
2 Diagnosing toddlers with an autism spectrum disorder is chal-
lenging, and there are typically long delays between the onset of
symptoms and diagnosis.
3 More efcient diagnostic processes may help alleviate long
waiting lists and parental concerns.
1 This paper describes an efcient and reliable model to facilitate
a diagnosis of autism in toddlers.
2 This paper demonstrates viability of using SACS and ADEC
autism screening tools as a diagnostic aid within the context of
a multidisciplinary team.

Early diagnosis of an autism spectrum disorder is gaining more Age

importance as we recognise the benefits of early intervention
and the distress felt by families who are in need of support.1,2 It
allows for early education to assist families with understanding
the impact of autism on their childs development, and it allows
for the provision of information on ways to navigate the support
options available.3
For the purposes of this paper, the term autism will be
used to refer to a Diagnostic and Statistical Manual (DSM IV
or 5) diagnosis of autistic disorder, Aspergers disorder, PDD-
NOS (pervasive developmental disorder not otherwise speci-
fied) and autism spectrum disorder.
The reliability and stability of an autism diagnosis can be
affected by age, assessment process and early intervention.
Correspondence: Dr Tessa Davis, Kogarah Developmental Assessment
Service, Corner of Railway Parade and Belgrave Street, PO Box 90, Kogarah,
NSW 1485, Australia. Fax: 0295883135; email: tessardavis@me.com
Conict of interest: None declared.
Accepted for publication 9 December 2014.
Clinicians have often inferred that diagnosing autism in toddlers
is unreliable and that it may be better to wait and see how they
respond to time and early intervention.4 Young et al.5 demon-
strated that features of autism that occur in older children
cannot be assumed to occur in infants. In toddlers, autism is
associated with multiple secondary deficits such as atypical
regulation of attention and emotions in addition to impairments
in social communication.6,7 However, mounting evidence sug-
gests that if autism is clear in the under 2-year-olds, then this
diagnosis will be stable on re-evaluation 12 years later,811 with
a diagnostic stability of 8090%.12
Clinician experience is a key factor in diagnostic stability, and
Volkmar et al.13 identified that diagnosis by an experienced cli-
nician is the most robust diagnostic tool. Although a clear
autism diagnosis is typically stable, symptoms may improve
markedly over the following years.14 Better outcomes with
earlier diagnosis may be associated with factors such as fewer
challenging behaviours, less rigidity, a reduction in family stress,
as well as early intervention facilitating brain plasticity and a
family sense of empowerment.15

Journal of Paediatrics and Child Health 51 (2015) 699703 699

2015 The Authors
Journal of Paediatrics and Child Health 2015 Paediatrics and Child Health Division (Royal Australasian College of Physicians)
Identifying autism early
A change in the presentation of a young child with autism has
been associated with factors12 such as access to early interven-
tion, the childs capacity and personal attributes (e.g. tempera-
ment, language ability, IQ, imitation and social interaction,
motor and adaptive skills), and probably genetic autism sub-
types. Several studies have shown that autism symptom severity
has little predictive power; ongoing review is therefore an
essential part of management.2,16
Assessment Process
The gold standard for autism diagnosis is a multi-disciplinary
assessment by a designated autism team conducting a detailed
profile of the child and diagnosing autism according to the
DSM.17,18
The Autism Diagnostic Observation Schedule Toddler Model
(ADOS-T) was developed in 2009 specifically for autism diag-
nosis in children under 30 months.19 The ADOS-T has been
shown to have good diagnostic validity; however, it is costly,
takes a significant amount of time to perform and score, and it
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
24-month-old children. The SACS is a semi-structured play-
based assessment that lists a series of social and communicative
behaviours together with a list of behaviours of concern related
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
nurses, it has a positive predictive value of 81%.21 The SACS is
free to access.22
The Autism Detection in Early Childhood Manual (ADEC)
was developed for use by allied health professionals as a psy-
chometrically valid, self-taught screening tool for identifying the
risk of autism in pre-verbal children aged from 1 to 3 years.23,24
It measures the childs responses to social initiations and facili-
tated play, and reports on these responses, which can give a
basis for targeted intervention. Scoring puts the child into a risk
category for autism: low, moderate, high or very high risk.
Early Intervention
Access to targeted early intervention may affect the consequent
diagnosis. Children who received early intervention may show
increased capacity to perform on standardised tests of IQ and
improved adaptive functioning, and were more likely to have
their diagnosis changed from autistic disorder to pervasive
developmental disorder.2527
Research is not clear on the optimal age for early intervention
or the best type of intervention.28,29 Randomised control trials
are challenging in this population in view of the huge variation
in individual symptoms, treatment schedules and developmen-
tal patterns.15,16
Background to the Study
The Kogarah Diagnostic Assessment Service (DAS) is a public
tertiary developmental service with a large geographically con-
tained catchment within south-eastern Sydney. Children with
700
Journal of Paediatrics and Child Health 2015 Paediatrics and Child Health Division (Royal Australasian College of Physicians)
T Davis et al.
symptoms relating to autism or developmental delay are
referred to the service by parents, educators, allied health pro-
fessionals and doctors. The diagnosis of autism has been tradi-
tionally made by comprehensive multidisciplinary diagnostic
team assessment (CMDA). In a CMDA, a developmental pae-
diatrician and psychologist (with support from a social worker
or special educator as required) gather information from parents
and early intervention providers; it also includes a physical
examination, play-based child interview and psychometric
assessment. This process, including feedback, and the lengthy
detailed report takes a combined time of approximately 12 staff
hours. Since 2010, all children under 2.5 years with symptoms
of autism were referred to our Toddlers at Risk of Autism Clinic
(TRAC), as opposed to CMDA.
The TRAC aimed to expedite an autism assessment for tod-
dlers. Previously, families were on a waiting list of many months
to have a CMDA. This long wait for an appointment was per-
ceived by clinicians to increase parental anxiety and delay access
to optimal early intervention, including the Governments
Helping Children with Autism funding.
Aims
This study aims to describe the TRAC as a model of assessment;
to explore the versatility of the SACS and ADEC as diagnostic
aids; and to evaluate the overall stability of diagnosis.
Methods
TRAC
The SACS and ADEC tools were considered most useful for the
TRAC, in view of their cost, availability and versatility.
Both tools are validated for use with children less than 24
months, and both were used in our cohort in order to compare
their usefulness. In children 2436 months, only the ADEC
could be used. This is the only clinic the authors are aware of
that utilises these tools to facilitate a definitive diagnosis of
autism.
The TRAC is staffed by a developmental paediatrician (or an
experienced paediatric fellow) and an allied health professional
(speech therapist or autism early intervention educator). Infor-
mation from all other professionals working with the child and
family is obtained by written correspondence or telephone
interview during the pre-clinic intake process and later inte-
grated into the assessment. In the clinic, the family interview is
conducted by the doctor while the SACS/ADEC are performed
by the allied health clinician in the same room. The team then
break for approximately 20 min to evaluate their findings and
come to a diagnosis according to the DSM (IV or 5) and prepare
for feedback. Feedback, including a diagnosis, is given in a
sensitive, family-centred approach. Information on autism
(print/DVD/websites) is given to the family as well as individ-
ually prepared recommendations on childcare, therapy, funding
options and medical investigations.
After the TRAC, all families are offered phone and email
contact support by a clinician as well as being referred to a
2-hour group parent information session, which is run monthly.
It supports families with practical information to build their
Journal of Paediatrics and Child Health 51 (2015) 699703
2015 The Authors
T Davis et al.
capacity and confidence in advocating for their child, as well as
negotiating through services. A few families (20%) require a
second appointment within 2 months of the TRAC. Reasons for
this second clinic include persistent distress with the diagnosis,
vulnerability due to social/CALD background, inability to attend
the parent information session or a need to involve other family
members to support them in the care of the child. Time required
for this TRAC process is up to 30 min pre-clinic preparation, up
to 2 hours face to face and approximately 20 min of post-clinic
communication (excluding attendance of the group parent
information session).
All families are scheduled for a routine follow-up assessment
612 months later, and those diagnosed with autism or devel-
opmental delay are scheduled for CMDA. While the doctor in
the CMDA may have also been present at the TRAC, the devel-
opmental psychologist would be new to the child. At the point
of CMDA, the child and family have had the benefit of 612
months of therapy targeted specifically at remediating the
symptoms of autism.
A retrospective audit was carried out on all children attending
the TRAC between August 2010 and April 2014 through review
of the Kogarah DAS patient database. The information obtained
was collated on a Microsoft Excel (Microsoft, Redmond, WA,
USA) spreadsheet and the Statistical Package for Social Sciences
(IBM, New York, NY, USA) was used to help with statistical
analysis. Ethics approval was obtained for this study.
Results
There were 42 children assessed between August 2010 and April
2014. Seven were girls and 35 were boys. Eight children had a
sibling with autism. The mean age of the children assessed was
25 months (range 1530 months, median = 26 months, stand-
ard deviation (SD) = 3.8). Families came from a range of back-
grounds, including Indigenous and Caucasian Australians,
Greek, Polish, Lebanese, Slovakian and Czech. Children were
referred by a paediatrician (50%), their parents (23.8%) or from
another source (see Table 1). The mean waiting time following
referral was 11.6 weeks (range 231 weeks, median = 10
weeks). Comparable wait times for our CMDA clinic was
approximately 2040 weeks.
Assessment tools
Out of the 42 children seen in the TRAC, 22 were assessed using
the SACS and ADEC concomitantly; 15 using ADEC alone; and
Table 1 Referral source
Referral source
Paediatrician
Parent
Allied health
Childcare
GP
Kogarah DAS (internal referral)
DAS, Diagnostic Assessment Service; GP, general practitioner.
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Identifying autism early
two using the SACS alone. Three children did not have a SACS
or ADEC locatable in their patient records.
One hundred per cent of patients with a high-risk or very
high-risk score on the ADEC also had an at-risk SACS score.
Twenty-one of 25 children (84%) with a high-risk score on the
SACS and/or ADEC were given a clinical autism diagnosis (see
Table 2). The four children not diagnosed with autism in the
TRAC in spite of a high-risk SACS and/or ADEC were diag-
nosed with global developmental delay, language delay and two
children with delay in social communication. One of these latter
patients was diagnosed with autism in a follow-up clinic.
A low-risk score on the SACS and/or ADEC resulted in a
clinical autism diagnosis in one out of 13 children. This child
subsequently had his autism diagnosis removed at follow-up.
Overall, when using a positive result in either the SACS or the
ADEC as a diagnostic test for autism, there is a sensitivity of
95.5%, specificity of 75%, a positive predictive value of 84%
and a negative predictive value of 92.3%.
The three children who had the SACS/ADEC information
missing from their file were all diagnosed with autism.
Five out of the 42 children also required a Griffiths Mental
Development Scale30 conducted to facilitate the TRAC evalu-
ation for autism.
Diagnostic stability
Twenty-five out of the 42 patients seen (59.5%) were diagnosed
with autism (four females, 21 males). This gender ratio is within
the range of general Australian statistics.31,32
Thirty-four of the 42 children had follow-up via face-to-face
consultation (or a phone discussion); phone follow-up was only
conducted when the family asked not to come in as they felt
there was no need, given they were satisfied with the findings
and to come to a clinic was imposing on them. Eight patients are
due for their follow-up appointment after this paper was
written.
Of the 25 children diagnosed with autism in the TRAC, 21
have had follow-up (the other four were scheduled for appoint-
ments after this paper was written). Nineteen out of 21 followed
up (90.5%) had the autism diagnosis re-confirmed at their
CMDA or via clinical reassessment. Two out of 21 children
(9.5%) who were diagnosed with autism at the TRAC had their
diagnosis removed on follow-up appointment.
Only one of the 17 children not diagnosed with autism in the
TRAC was later diagnosed with autism. At the time of the initial
Table 2 Tools outcomes in patients given an autism diagnosis
Number
(percentage) Tools outcome Number Autism diagnosis
given
21 (50.0)
10 (23.8) Positive SACS/ADEC 25 21
8 (19.0) Negative SACS/ADEC 13 1
1 (2.4) Missing SACS/ADEC 3 3
1(2.4) Mixed results SACS/ADEC 1 0
1 (2.4)
ADEC, Autism Detection in Early Childhood; SACS, Social and Communi-
cation Scale.
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Identifying autism early
Table 3 Stability of diagnosis at follow-up
Number of Number of children
children who had a
who had a re-assessment
re-assessment whose diagnosis
changed at
re-assessment
TRAC diagnosis of autism 21 2
TRAC not diagnosed with 17 1
autism
Total 34 3
TRAC, Toddlers at Risk of Autism Clinic.
TRAC (aged 17 months), this child was described as having
delays in social communication, an absence of restrictive and
repetitive behaviours, as well as exposure to a less than optimal
social and emotional home environment.
For all children assessed in the TRAC, there was an overall
diagnostic stability of 91.2% (Table 3).
Discussion
This study demonstrates a successful diagnostic model that
could be used by other services. The TRAC model incorporates
the SACS and/or ADEC as diagnostic aids for toddlers with
suspected autism. Our clinic is run by experienced professionals;
however, the effectiveness of this TRAC model will need to be
demonstrated by replication in other services. Our diagnostic
stability was 91.2% which is comparable with other previous
research.9,33
The resources required appear less than those used in other
studies.912,34 However, no direct comparison was conducted,
and therefore, the authors cannot conclude that our TRAC
model is better than other existing clinic models. Although the
TRAC may be less comprehensive than some recommended
protocols,35,36 it is intended to rapidly identify autism in children
early and begin targeted intervention. The TRAC does not
negate the need for a later re-evaluation or psychometric assess-
ment being conducted.
Feedback collected from families via phone and email contact
during follow-up was positive, indicating a sense of relief at
having access to professional assessment earlier than expected,
as well as satisfaction with the TRAC clinic. The staged
follow-up support gave parents an opportunity to research, and
time to formulate their questions without having to deal with
an overload of information all on one day. In addition, the
format of group-structured parent information sessions was well
received and reported by parents on feedback forms to be
helpful.
This study used both the SACS and the ADEC, where possible,
in order to compare their effectiveness. This data suggest both
these tools are effective, easily administered, and there seems to
be no benefit in terms of reliability of one tool over the other.
Given the nature of managing these clinical conditions,
re-evaluation of children in the follow-up was not blinded;
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Journal of Paediatrics and Child Health 2015 Paediatrics and Child Health Division (Royal Australasian College of Physicians)
T Davis et al.
however, an experienced clinical psychologist who had not pre-
viously met the child was part of the CMDA.
During this study, there was a move from the DSM-IV to
DSM-5. The new DSM-5 requires two restrictive, repetitive
behaviours, whereas the DSM-IV only required one. Toddlers
with autism commonly present with a clinic predominance of
disturbed social communication with delayed manifestation of
restricted repetitive behaviour.37,38 This may affect future corre-
lation between the results in the SACS/ADEC and a clinical
diagnosis according DSM-5; however, there was insufficient
scope in this paper to analyse this data.
The benefits of diagnosing toddlers with autism could have
been better demonstrated by including more specific outcome
measures such as family satisfaction, family stress, quality of life,
improvements in autism symptoms or adaptive functioning.
Conclusion
The TRAC is a successful model to identify toddlers who have an
autism spectrum disorder. This gives families an earlier under-
standing of their childs behaviour, as well as access to appro-
priate services and supports. This approach is seen as progressive
in terms of current thinking and research into early identifica-
tion and diagnosis. The diagnosis is stable in 91.2% of children.
The TRAC model requires fewer resources than our compre-
hensive multidisciplinary diagnostic assessment and compara-
tively time efficient.
The ADEC and SACS were both designed as autism screening
tools; however, in the setting of the TRAC, these tools can be
used reliably as diagnostic aids that assist experienced clinicians
in a DSM diagnosis of autism. Our results demonstrate compa-
rable stability of diagnosis to other studies that have used the
ADOS-T as the diagnostic tool.911 This model can be considered
by other clinicians to guide them with autism diagnosis in tod-
dlers, and potentially reduce waiting times.
Acknowledgements
We would like to thank Karen Burton, research assistant at
Neuroscience Research Australia, for her help with the statistical
analysis.
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