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Triage and Efficiency in Autism Assessment – An initiative to reform assessment
protocols and reduce Irish waiting lists using the Gale-Shapley stable matching algorithm
Caroline Ward-Goldsmith MBPsS, MEHPS
University of East London Department of Psychology October 2015
ABSTRACT
This review paper explains the condition of Autism and its spectrum of presentation including
exploring costs, prevalence, aetiology of causes and early signs. Early intervention, and new
research are discussed in addition to diagnostic protocols for best practice. The issues regarding
waiting lists are explored and a solution proposed with the aid of Gale & Shapley’s (1962) stable
matching algorithm. Proposed to be utilised for more effective patient to service match through
triage-priority of need for available national assessment slots.
Currently children in need of an Autism assessment are prioritised from region to region by the time
they have spent on waiting lists. However this often unfair practice is considered in light of the fact
that a child in one part of the country may have a higher need and spend longer on the waiting list
than a child in a different geographic location. The case is put for considering a protocol for
assessment prioritisation through triage factors which identify children according to priority of need.
Secondly unnecessarily time consuming, inefficient assessment procedures which lack standardised
structure are explored. It is proposed that developing a triage system based on the stable matching
algorithm, matching children to available assessment spaces would cut waiting times and make best
use of available resources. Further it is proposed streamlining the assessment procedure itself
would increase output by more than 100% and ensure upwards of 20 children a month can be
assessed by intervention teams consisting of Clinical, Educational and Assistant Psychologists, a
Speech and Language Therapist and an Occupational Therapist. A micro managed plan detailing
service provision and appointment times is worked through in order to show the feasibility of the
initiative to reform assessment protocols and reduce macro waiting lists for Autism in Ireland. Finally
onward focus is discussed in relation to considerations for instigating the proposals.
What is Autism?
Autism is a neuro-developmental condition with a strong genetic component (Bailey et. al., 1995)
which affects the individuals’ ability to engage and communicate socially often accompanied by
compulsive atypical behaviours and can present with or without intellectual impairment and
language impairment (Gould & Wing, 1979). Severity of the presentation including intellectual
function denotes classification on the spectrum which ranges from low functioning and or non-
verbal to articulate and high functioning (HSE, 2012). To take into account the range of
presentations Autism is described along a continuum of Autism Spectrum Conditions or ASC
(Lai et. al., & Barren-Cohen, 2011).
The Cost of Autism
Figures for the overall lifetime costs in Ireland were unavailable, however recent research carried
out for the UK and USA estimate the lifetime cost of providing for a person with Autism to range
within an average of 2.4 million dollars when the person has an intellectual disability, and 1.4 million
without. The study states that in the USA 40% of autistic people present with an intellectual
disability (Buescher, et.al., 2014).
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Prevalence of Autism
Autism affects just over 1 in 100 new births with a prevalence rate of 1.1% (Constantino, 2014).
Therefore of the 67,462 children born in 2014 in Ireland, CSO.ie (2014) 674 were born with Autism.
It is a lifelong condition that equates to an adult prevalence of approximately 50,000 in a population
of 4.5 million, CSO.ie (2014)
A significant proportion of the parents and carers of those children will eventually seek a diagnosis
and treatment interventions to address traits related to educational functioning, social interaction,
compulsive behaviours and difficulties in communication which impact on the child’s ability to
engage and benefit from educational and social settings (Bailey, et. al., 1995).
Aetiology – Causes of Autism
There is a strong genetic correlation in Autism according to twins’ studies (Bailey, et. al., 1995)
however prevalence rates decrease as environmental factors vary. To illustrate this point consider
identical twins have the highest prevalence rates, then non identical twins followed by siblings.
Considering the identical twins shared the same egg, same DNA and same womb space at the same
time and the non-identical twins shared a different egg, similar DNA same womb space at same time
and the siblings shared different eggs, similar DNA, different womb space at different times this
additionally correlates to a strong environmental component. No specific individual gene has as yet
been identified however to date more than 200 – 400 genetic markers have been identified as linked
to the Autism phenotype-presentation of behaviours (Pinto, Pagnamenta, Lambertus, et.al., 2010)
Early signs
Frequently parents do not notice anything amiss until the child is 18 months to two years of age
(morsolutions, 2015). Causes for concern come typically as the child develops isolated own agenda
behaviours, limited or diminishing eye contact, failure to acquire language and lacks or has a
reduced inclination towards reciprocal social interaction. More importantly speech delay is
accompanied by a lack of communicative intent where the child seems uninterested in
communicating with others (Suzman, 1999). They may also have a tendency towards compulsive or
obsessive habits or a pre-occupation with sameness or insistence on routines being adhered to
(Bello-Mojeed, et., al., 2013).
Early intervention
A number of educational, communicative and occupational interventions have been found to have
good efficacy if applied at the first possible juncture. Early intervention is key to interventions having
the greatest impact on outcomes (Rogers & Vismara, 2008).
New Research
Dr Ami Klin’s eye tracking research has led to drastically earlier identification of markers using a
specially adapted eye tracking camera which measures the target focus and duration of the infants
gaze from as young as two months onwards (Klin, 2009). Dr. Klin discovered babies are usually very
social creatures born with highly developed social curiosity through their use of eye contact which
starts to decline from the 3rd month onwards and is significantly impacted by age 36 months in
children who are later diagnosed with Autism. This correlates to a direct contrast in neuro-typically
developing children whose eye contact dramatically increases during the same period.
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Such research has many ongoing implications not withstanding one of the first pathological
diagnostic methods to diagnose Autism much earlier and to intervene and monitor effectiveness of
interventions, through the evaluation of eye tracking software (Klin et. al., 2009).
Diagnosis of Autism
The Klin research gives a hopeful prognosis for much earlier future diagnosis however in the absence
of an established pathology testing protocol, clinical observation and reporting is relied upon to
formulate a diagnosis of Autism. Various interview and observational instruments coupled with
clinical observation establish the history, manifestation and presentation of impairments
(HSE, 2012).
Multi-disciplinary Assessment
Best practice for the assessment and diagnosis of Autism was laid down in a British study which
stated “Autism Assessment should include the use of instruments designed to assess multiple
domains of functioning and behaviour, the inclusion of parents and caregivers as active partners,
and the consideration of developmental factors throughout the diagnostic process”
(Huerta & Lord, p.1., 2011).
The study reviewed several diagnostic tools including; ADI-R, ADOS,
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cognitive assessments,
adaptive functioning assessments, speech and language and occupational therapy protocols
(Huerta & Lord, 2011).
Commonly used in diagnosis the ADI-R is a semi-structured interview for parents or caregivers
consisting of 93 questions across three domains of functioning; communication, reciprocal social
interactions, and restricted, repetitive, and stereotyped patterns of behaviour. Up to 42 of the items
are systematically combined to produce a diagnostic algorithm for autism based on the ICD-10
(World Health Organization [WHO], 1990) and DSM-V (American Psychiatric Association [APA], 1994)
criteria as specified by the authors (Kim & Lord, 2011). Although the ADI-R can assist in forming a
diagnosis it is of note the algorithm was found to perform less accurately against clinical judgement
especially prior to 20 months of age (Cox, et.. al., 1999). Further it has been argued that over
reliance on diagnostic scales, as opposed to clinical judgement alone is not sufficient and vice versa.
A balance between the two is most conducive to good diagnostic practice (SIGN, 2007). ADOS is an
observational schedule where the activities presented are designed to elicit behaviours and traits
associated with Autism which are atypical in the general population (Lord, Rutter, Goode, et.al.,
1989). Combining multidisciplinary components with the ADI-R with ADOS, assessing adaptive
function, speech pathology and occupational functioning is the gold standard of autism diagnosis in
clinical practice. Moreover this protocol gives rise to insights for optimum effective intervention
(Birnbrauer & Leach, 1993) from multiple perspectives.
Waiting lists for assessment
In Ireland over-demand for Autism assessment has created long unacceptable waiting lists for
children, with over 700 currently waiting in Dublin and Cork alone (Irish Times, 2015). According to a
recent UK department of health study 76% of reported cases involved a child under five years of age
yet the average age for diagnosis is well over five years of age (Change.org, 2015).
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ADI-R - Autism Diagnostic Interview - Revised edition
ADOS – Autism Diagnostic Observational Schedule
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Official national figures for waiting list times are not available for Ireland however anecdotal
evidence from parent’s groups estimate wide variance all over the country, reporting that time on
the lists can be between nine months to five years or more before a child is seen by appropriate
professionals.
A 2012 HSE report stated “Geographically, current services can vary from robust, comprehensive
and integrative to isolated, patchy and ineffective” (HSE, p.16, 2012). Parents spend so long on
waiting lists, research into how to support them through the long journey from first concerns to
assessment was deemed necessary for investigation (Connolly & Gersch, 2013).
Gale & Shapley’s (1962) Stable Matching Algorithm
Consider 30 psychology assessments to allocate to 30x5 year olds. A first come first served basis may
seem in order. However if there are 30 assessment spaces for 40 children at various ages and stages
for example 8x2 year olds, 15x3 year olds, 10x8 year olds and 7x12 year olds, all with varying
degrees of function and other mitigating factors, the sorting task becomes much harder to imagine a
fair allocation. Complicated further by the individual needs of the child and subjective psychosocial
priorities.
A similar situation once faced college administrators when universities did not know how to match a
widely spread out student population to available courses they were keen on and best matched to
attend, therefore a mathematical algorithm was sought as a solution (Gale & Shapley, 1962). The
Nobel prize winning stable matching algorithm
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works on the principal of taking certain factors into
consideration and applying them to available resources. You may not always get the first choice you
want but it will be within a certain preference range and the best available matched choice for you.
If one applies the stable matching algorithm to the problem of assessment places and priority of
need for matching, it would be seeking to ensure assessment places went to the most crucial of
recipients with the most pressing of needs. For example a non-verbal child who is younger would
have a more pressing need than an older child who is verbal, for early intervention because their
window of opportunity is narrowing as to how effective intervention is going to be. According to a
set list of triage factors the child would be allocated points moving them up the waiting list, for
‘assessment slots’ across the country for Psychology, SLT and OT. The results of the assessments
would be logged into a member page for that child where any professional could access them and
contribute their work to the file.
For example triage factors may include allocating points for, age, being verbal/non-verbal, limited
eye contact, peripheral vision bias, teacher or health professional raising concerns, transitioning
from one level to another, (e.g. pre-school to primary or primary to secondary) odd habits and or
compulsions, resistant to change, sibling with a mental health diagnosis or being flexible on location
for assessment.
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Lloyd Shapley and Alvin Roth won the Nobel prize for physics in 2012 for a later version of the Stable
Matching Algorithm.
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Current Assessment procedures in practice
The goal of the assessment procedure should be to establish as quickly and accurately as possible if
the child meets or exceeds the diagnostic criteria of the ICD-10 or DSM5
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depending on schedule
use, and if so which category of diagnosis and intervention is most appropriate.
However in state practice things are a little different. Although a multidisciplinary approach is in
place, not as much weight is given to the input of the speech, language and occupational
professionals or educational psychologists as is given to the clinical psychologist who is in charge of
all the information, assigns the final diagnosis and compiles the report.
The clinical psychologist often prefers to approach the task from scratch although there is a wealth
of information already available. Despite a complete history being taken by previous professionals
the clinical psychologist will again do another history and use assessments that duplicate
information already obtained through the SLT or OT disciplines. The role adopted by the clinical
psychologist instils an air of mystery to the whole process like some grand high order of diagnosis
and ensures the assessment procedure is shrouded in mystery, overly lengthy and reports often take
months to complete. Coaxing clinical psychologists to relinquish some of their hold will likely be the
most challenging part of assessment reform.
The state procedure as it stands at present often takes one eight hour day for a clinical psychologist
to carry out their part of one Autism assessment and then the report takes anything up to three
months or more. They usually do between three to five assessments a week (usually three as the
other days are set aside for report writing and clinical work). Making a total of 10 – 12 assessments
per month from the clinical side, then the educational psych, SLT and OT parts take another half a
day each. Currently each assessment is taking four professionals the best part of three days to
complete not including writing the report.
Component Assessment Procedure
A component assessment procedure would cut out all the mystery and monopoly that clinical
psychologists wield over the assessment process, and better utilise the vast experience and talents
of other health professionals such as assistant psychologists, speech and language professionals and
occupational therapists.
A component assessment would consist of; a central history, an SLT piece, an OT piece, a cognitive
piece and a clinical psych piece. The first part would be one central history and review of prior
reports taken by an assistant psychologist in compliance with a pre-arranged formula adhering to
best practice, and logged to the file for the whole team to view. Each person would complete their
own assessment for their discipline, compile their findings and write a short explanatory summary to
log to the child’s unique page. The assistant psychologist would then collect all the summaries and
compile them into a prearranged frame report and log it to the child’s file for the clinical
psychologist who would then contribute their piece and make the diagnosis based on the findings
from a pre-arranged list of diagnostic categories set out in the ICD-10 or DSM 5.
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ICD-10 – International Classification of Diseases tenth edition and DSM 5- Diagnostic and Statistical Manual of
the American Psychiatric Association 5th edition are standard criteria for diagnosis of mental health
impairments
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A separate list of possible interventions would also be complied and each discipline would tick off
options to contribute to what they deem appropriate. Suggestions would then be incorporated into
an intervention report. Such an approach is favoured in private practice as an efficient protocol.
The designers of the ADI-R stress the instrument can be completed in 90 minutes to two hours
maximum. The ADOS assessment takes between 30 – 45 mins maximum of one hour including
scoring. The SLT assessment takes 2- 4 hours depending on age and ability and the
educational/cognitive assessment takes 1-2 hours similarly depending on age and ability. The
Vineland adaptive behaviour assessment has a parent report facility which is rarely used but can
actually be prior emailed to the parents and brought in on the day to be scored by software which
generates a report.
As a safeguard and second opinion of adaptive functioning the Occupational Therapist carries out an
extensive OT assessment in 2-4 hours so no child is going to be missed if the results of the parent
report and the OT differ.
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Table 1 outlines a selection of assessments best practice suggests could be used in Autism
Assessment, their purpose and the people best qualified to administer them.
Instrument
Best Professionals
to administer this
tool
Maximum Time to
complete
Software
available
to score
Purpose and aims in using this
tool
Patient History
& Review of
prior reports
OT/SLT/Assistant
Psych
45 minutes to 1 hour
no
To document the
developmental, medical & social
history pre/post-natal and up to
date.
ADI-R
Interview
Clin psych
2 hours
yes
A parental/caregiver interview
to establish the history
presentation and manifestation
of traits and behaviours related
to Autism (dx) and differentiate
other presentations (ddx)
ADOS
assessment
Needs two pros (1
to watch 1 to
score) clin psych &
SLT or OT
1 hour
yes
Observational play based
schedule designed to elicit traits
usually associated with Autism
SLT
Assessment
SLT
2-4 hours depending
on age and
development
yes
To determine
expressive/receptive language
and communication functioning
OT
Assessment
OT
2-4 hours depending
on age and
development
yes
To determine levels of
occupational functioning
Ed Psych
Assessment
Ed Psych
1-2 hours
Depending on age
and development
yes
To determine cognitive
functioning and full scale IQ
Vineland
Assessment
Parent completes /
scored by assistant
psych
15 mins
yes
To determine adaptive function
as observed by a parent,
caregiver or teacher
Report
assembly
Assistant
psychologist
1 hour
no
To assemble the report in order
to summarise all relevant
professionals involvement
Intervention
report
OT/SLT/Clin Psych/
Assistant Psych
1 hour
no
To determine an ongoing
intervention plan based on
strengths and challenges
Diagnosis and
Report sign off
Clin Psych
1 hour
no
To pull together the information
from all disciplines and
determine a final diagnosis
based on the evidence of the
findings.
Looking at the time it takes for each component a child could be assessed in approximately 10 hours
across four disciplinary components spread out over various days in a one week period.
(Appendix 1, Tables 2- 6)
Splitting the whole process into manageable assigned components and working together with each
discipline co-operating and helping each other would allow for assessments to be done on an
efficient systematic basis, using the time and resources of each professional to optimum capacity.
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When all components are complete they can be assembled and signed off by the Clinical
Psychologist who assigns the diagnosis. The reports are assembled and finalised over a three day
period the following week and there is then a one hour feedback meeting for parents on the last two
days of the second week.
With this protocol it would be possible to conduct 10 – 12 assessments, reports and feedback
meetings within a 10 day period. And to do at least 20 assessments per month per team comprising
a Clinical Psychologist, Educational Psychologist, Assistant Psychologist, Occupational Therapist and
Speech and Language Therapist.
This time frame would be accomplished by;
The Clin Psych doing four ADI-R Interviews in a day instead of one so in three days the Clin Psych
would do 12 ADI-R interviews.
The Clin Psych & SLT / OT would do 6 ADOS in a day so in two days they could do 12.
The Ed Psych would do four assessments in a day making 12 in three days
OT could do four assessments a day making 12 in three days
SLT would do four a day Making 12 over three days
Clin /Assistant psych need three days to write the 12 assessment and intervention reports
Ed psych needs three days to write their 12 reports
OT needs three days to write their 12 reports
SLT needs three days to write the 12 reports
Working to an organised efficient plan over a period of five days the 12 assessments across
inter/multi- disciplines would be completed. The following week, three days would be allocated to
writing the reports which could be ready for the final parental feedback meetings which take
approximately an hour to complete, and could be accomplished in the last two days of the second
week. Making a total of ten days from start to finish for 10 – 12 assessments from beginning to end.
The estimate of 10 to 12 is based on the possibility of one or two children being unable to complete
the assessment in the allotted time frame and may need a second visit to any given professional.
Within the course of working practice this occurrence is rare however is accommodated during quiet
days when a child may need to pop back for a follow up appointment to complete a component.
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Summary and Conclusions
Autism is a neurodevelopmental condition with a strong genetic component (Bailey, et. al., 1995)
which affects the individuals’ ability to engage and communicate socially, often accompanied by
compulsive atypical behaviours and can present with or without intellectual impairment and
language dysfunction.
Figures for Ireland of the lifetime cost to provide for a person with Autism are unavailable, however
in the USA recently researched estimates state 2.4 million dollars when the person has an
intellectual disability, and 1.4 million without.
Autism affects just over 1 in 100 new births in Ireland with a prevalence rate of 1.1% equating to
approximately 670 new cases annually with 50,000 adults already affected.
A significant proportion will eventually seek diagnosis and treatment interventions to address traits
related to educational functioning, social interaction, compulsive behaviours and difficulties in
communication which impact ability to engage and benefit from educational and social settings
putting strain on assessment and intervention services.
There is a strong genetic correlation in Autism where 200-400 genetic markers have been identified
as linked to the autism phenotype - presentation of behaviours
Frequently the child is 18 months to two years before concerns are raised which may include
isolated own agenda behaviours, limited or diminishing eye contact, failure to acquire language and
lacks or has a reduced inclination towards reciprocal social interaction and communicative intent
with or without obsessive or compulsive behaviours and preoccupation with sameness.
Early intervention is key to those interventions having the greatest impact on outcomes.
Dr Ami Klin’s eye tracking research has led to drastically earlier identification of markers using
specially adapted eye tracking cameras which measure the target focus and duration of the infants
gaze from as young as two months onwards and afford an opportunity for much earlier diagnosis
and intervention.
Current diagnosis combines multidisciplinary components of the ADI-R with ADOS, assessing
adaptive function, speech pathology and occupational functioning as the gold standard of autism
diagnosis in clinical practice. Moreover this protocol gives rise to insights for optimum effective
interventions.
Parents suffer on long waiting lists varying from nine months to over five years. Geographically,
current services can vary from robust, comprehensive and integrative to isolated, patchy and
ineffective.
An archaic hierarchy system of assessment is hampering an efficient system being established.
Information is often duplicated or not utilised effectively from other professionals.
A national database set up of available assessment slots for OT, SLT and Psych services using the
stable matching algorithm could solve the problem of assessment places by a triage system of
priority need for matching. Thus ensuring assessment slots are allocated to the most crucial of
recipients with the most urgent need. The database could have a log-in page for each child ensuring
information is logged directly and easily shared.
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A component assessment procedure, comprising an inter/multi-disciplinary approach would clarify
the assessment process, better utilise the vast experience and talents of other health professionals
and drastically increase productivity in a climate of transparency and cooperation.
Assessments would be done over a two week cycle (10 working days) assessment protocol with
scheduling for 12 children per assessment team incorporating time for assessment, report writing
and parental feedback. Assessment officers would be required to liaise with parents offering them
available component assessment slots where they could ‘bank’ components to the child’s profile.
The final report would be submitted for local services including SENO and HSE intervention services
Onward Focus and Considerations
This paper accords with and acts as an extension to current waiting list reduction strategies where
patients on a list in one area are offered an immediate appointment if they will travel to vacant slots
nationwide. The strategy has been successful in reducing waiting list times in fields such as
orthopaedics and dermatology and extends the thinking to mental health assessment.
The project would be better informed by consultation with I.T.
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professionals whom will be required
to adapt the algorithm to the triage protocol for assessment according to an agreed set of priority
matching criteria. In addition to consultation with interested parties including parent’s focus groups,
health professionals, policy researchers and HR departments in order to reform assessment
procedures and protocols.
New developments in eye tracking research for Autism could potentially inform much more cost
effective protocols for earlier and more effective diagnosis, intervention and evaluation across the
lifespan of people with Autism.
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I.T. – Information Technology
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APPENDIX 1
Tables 2-6 illustrate a two week time period (10 working days) assessment protocol with personnel
scheduling for 12 children by one assessment team comprising one of each Clinical, Educational and
Assistant Psychologists, Speech & Language Therapist and Occupational Therapist.
Table 2
Assessment protocol for 12 children with suggested appointment times over a one week period of
assessment. Clin Psych for ADI-R. Clin Psych & OT/SLT for ADOS
Time
Monday
Tuesday
Wednesday
time
Thursday
Friday
9-11
Clinpsych
ADIR
Child 1
Clinpsych
ADIR
Child 5
Clinpsych
ADIR
Child 9
9-10
Clinpsych
&OT/SLT
ADOS
Child 1
Clinpsych
&OT/SLT
ADOS
Child 7
11-1
Clinpsych
ADIR
Child 2
Clinpsych
ADIR
Child 6
Clinpsych
ADIR
Child 10
10-11
Clinpsych
&OT/SLT
ADOS
Child 2
Clinpsych
&OT/SLT
ADOS
Child 8
11-12
Clinpsych
&OT/SLT
ADOS
Child 3
Clinpsych
&OT/SLT
ADOS
Child 9
LUNCH
LUNCH
LUNCH
LUNCH
LUNCH
LUNCH
LUNCH
2-4
Clinpsych
ADIR
Child 3
Clinpsych
ADIR
Child 7
Clinpsych
ADIR
Child 11
2-3
Clinpsych
&OT/SLT
ADOS
Child 4
Clinpsych
&OT/SLT
ADOS
Child 10
4-6
Clinpsych
ADIR
Child 4
Clinpsych
ADIR
Child 8
Clinpsych
ADIR
Child 12
3-4
Clinpsych
&OT/SLT
ADOS
Child 5
Clinpsych
&OT/SLT
ADOS
Child 11
4- 5
Clinpsych
&OT/SLT
ADOS
Child 6
Clinpsych
&OT/SLT
ADOS
Child 12
12
12
Table 3
SLT Assessment in week 1
time
Monday
Tuesday
Wednesday
9-11
Child 2
Child 6
Child 10
11-1
Child 1
Child 5
Child 9
LUNCH
LUNCH
LUNCH
LUNCH
2-4
Child 4
Child 8
Child 12
4-6
Child 3
Child 7
Child 11
Table 4
OT Assessment in week 1
time
Monday
Tuesday
Wednesday
9-11
Child 5
Child 4
Child 7
11-1
Child 12
Child 2
Child 1
LUNCH
LUNCH
LUNCH
LUNCH
2-4
child 11
Child 3
Child 8
4-6
Child 9
Child 10
Child 6
Table 5
Ed Psych Assessment in week 1
time
Monday
Tuesday
Wednesday
9-11
Child 7
Child 12
Child 3
11-1
Child 6
Child 1
Child 2
LUNCH
LUNCH
LUNCH
LUNCH
2-4
Child 8
Child 9
Child 4
4-6
Child 10
Child 11
Child 5
Table 6
Clin Psych/Ed Psych/OT/SLT Parental feedback meetings in week 2
time
Thursday
Friday
9-10
Child 1
Child 7
10-11
Child 2
Child 8
11-12
Child 3
Child 9
12-1
Child 4
Child 10
LUNCH
LUNCH
LUNCH
2-3
Child 5
Child 11
3-4
Child 6
Child 12
Abbreviations: SLT-Speech & Language Therapist. OT–Occupational Therapist.
Clin Psych – Clinical Psychologist. Ed Psych-Educational Psychologist.
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