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Journal of Child Psychology and Psychiatry 60:12 (2019), pp 1353–1356 doi:10.1111/jcpp.13110

Editorial Perspective: Delivering autism intervention

through development
Jonathan Green1,2,3
1
Faculty of Biology, Medicine and Health, University of Manchester, Manchester; 2Royal Manchester Children’s
Hospital, Manchester University NHS Foundation Trust, Manchester; 3Manchester Academic Health Sciences
Centre, Manchester, UK

addition to this, but has the benefit as we will see

The challenge
of evidenced interventions that are consistent with
Autism is a priority because of its prevalence and its
these models.
enduring impact for individuals, families and society.
The prevalence estimates are consistently 1%–1.8%
globally (Elsabbagh et al., 2012). Just one reflection of Self-management
the overall impact is the estimated £1.5 million lifetime
Evidence synthesis of >1,500 studies (Taylor et al.,
individual health and societal cost in the United
2014) finds ‘self-management’ to be essential to qual-
Kingdom ($2.4 million in USA) for ASD with intellectual
ity care in long-term conditions, but crucially that this
disability (£0.92 million/$1.4 million without intellec-
is a complex intervention in its own right, requiring
tual disability), a total £32 billion per annum in the
focused education, psychological and systems support
United Kingdom and $196 billion in the United States
to be effective. In this context, it so happens that the
(Buescher, Cidav, Knapp, & Mandell, 2014). These
currently best evidenced primary preschool interven-
costs exceed those of stroke, heart disease and cancer
tions in ASD are carer-mediated (see A,C below) and can
combined in the United Kingdom, but do include
thus enable family self-management and resilience
essential and appropriate social outlays for individual
consistent with this strategy. Further support for self-
difference, as well as those that one might wish to
care can come from psycho-education and support
mitigate. Two characteristics of ASD are likely to be
groups around diagnosis (B below) and creative use of
relevant to such impact: first, the life span-enduring
telemedicine and remote clinical monitoring.
nature of the condition for most people and second, the
core difficulties in social functioning and cognitive
flexibility that tend overall to reduce social indepen- Case management
dence.
Sustained key working in good communication with
Making an effective and efficient response to the
specialist clinicians is a key part of the ‘Collaborative
extent of this public health issue poses new challenges
Care Model’ for mood disorder in adults (Archer et al.,
for international health and care systems. The current
2012). This is also part of NICE recommendations for
pattern of provision internationally is patchy, usually
management of families, children and young people in
short-term focused and commonly unevidenced
autism (National Institute for Health & Care Excel-
(Green & Garg, 2018). I argue here for the need to re-
lence, 2013), although can be challenging to deliver in
frame intervention planning in the context of the
practice. Predictable transition stress points (infant-
enduring nature of the condition, with an integrated
junior; primary–secondary; transition to adulthood,
sequence of developmentally orientated evidenced
inappropriate school placement) can be anticipated
approaches to optimise social functioning and relat-
and managed through proactive case management.
edness and to manage co-occurring difficulty.
Case management also facilitates integrated planning
with other agencies including education (the latter an
Models from enduring illness care aspect not covered in this Editorial but a key factor in
Researched models for managing chronic and endur- the child’s developmental outcomes).
ing conditions in other areas of health care empha-
sise key components of (a) patient self-care and
Stepped care
resilience, (b) clinical case management and (c)
access to step-up specialist care as needed. The The stepped-care model (Bower & Gilbody, 2005)
ASD context requires a developmental focus in advocates replacement of unequally distributed
intensive specialist care (common in the autism field
internationally), with more a more equally dis-
Conflict of interest statement: No conflicts declared. tributed foundational treatment of lesser intensity

© 2019 Association for Child and Adolescent Mental Health

Published by John Wiley & Sons Ltd, 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main St, Malden, MA 02148, USA
1354 Jonathan Green
(although, crucially, still of demonstrated effective-
ness), alongside an efficient system of step-up access
to more intensive specialist care when needed;
returning to the lower-intensity management as soon
as is appropriate. While such a model promises
better equity and resource efficiency, necessary
components are that the foundation intervention
itself is evidenced (so that this is not a lesser
standard of care), and that the system is monitored
and ‘self-correcting’ (i.e. avoiding patients dwelling
overlong in low-intensity care that is ineffective or in
high-intensity care that is wasteful). As we will see
below, current autism intervention science gives us a
unique platform with which to implement such a
stepped-care model, since family-mediated interven-
tion is simultaneously relatively low intensity and
the best evidenced of the primary autism interven-
tions available, providing the foundational treatment
against which step-up can happen.
Developmentally phased intervention model
for ASD
Within the context of long-term management theory
and current intervention science evidence, I propose
for ASD therefore a developmental sequence of
initiatives from infancy onwards (Figure 1). Com-
bined over time, they may be hoped to be additive in
effect, although this has not yet been tested.
(A) Infancy prodrome
The developmental period before symptoms consol-
idate into a diagnosable phenotype can last typically
(A) Prodrome
Social interaction interaction
(B) Diagnosis
Psycho-education support
(C) Core symptoms
a and self-care
g
e Social communication
intervention
(D) Comorbidities
Specific disorder treatment
(E) Transitions
Case management
Figure 1 Sequential Intervention Model. Intervention Column, strength of colour-fill reflects strength of current supporting evidence.
‘Social Interaction Intervention’, ‘Social Communication Intervention’ see Text. Universal, Selective, Indicated interventions; see text
[Colour figure can be viewed at wileyonlinelibrary.com]
J Child Psychol Psychiatr 2019; 60(12): 1353–6
for the first 2–3 years, but sometimes longer. Two
decades of prospective developmental research with
infant siblings of ASD probands have revolutionised
our understanding of this prodromal period and
suggested potential treatment targets. Autism does
not have sufficient prevalence to justify a universal
population approach, but ‘selective’ (with increased
prior likelihood of ASD) or ‘indicated’ (showing early
signs of ASD) identification is feasible. Randomised
controlled trial evidence here is mixed. Intervention
with infant-siblings suggesting developmental gains
in symptom severity (Green et al., 2017) is not
replicated to date in an ’indicated’ population sample
(Whitehouse et al., 2019). Later interventions for
toddlers with early developmental atypicalities in the
second year have shown short-term but not always
sustained effects on social interaction (Green &
Garg, 2018). Nevertheless, pre-emptive intervention
in infancy for autism and other social communica-
tion difficulties is becoming routine in some coun-
tries and subject to increasing user-expectation; it
can also be used as an early response to emerging
concerns prior to formal diagnosis, perhaps obviat-
ing later assessments in some cases. However,
further work is necessary to test the specificity of
case identification and long-term added value of
such intervention.
(B) Around diagnosis
Postdiagnostic psycho-education workshops and
family support are commonly used and clinically
intuitive; they not yet formally evidenced for impact
but there are ongoing trials work proceeding.
Selective/ Pre-
indicated emptive
care
Family
Resilience
Universal
Social
functioning
Step-up care
Indicated
Universal Ongoing
support
© 2019 Association for Child and Adolescent Mental Health
doi:10.1111/jcpp.13110
(C) Early intervention after diagnosis
Family-focused intervention during this period has
the strongest current effectiveness evidence. Impacts
have been found in relation to the child’s immediate
social communication or behaviour with caregiver,
more generalised social functioning change beyond
their caregiver dyad, and longer-term downstream
effects on autism symptoms in development (Green &
Garg, 2018). Specifically, social communication inter-
vention delivered through parents or teachers has
enough evidence to be the ‘consider’ recommendation
for early intervention in core symptoms in UK guid-
ance (National Institute for Health & Care Excellence,
2013) and more recent UK IAPT autism and Learning
Disability Curriculum. One such social communica-
tion intervention has shown sustained impact to
reduce symptom severity for 6 years after treatment
end (Pickles et al., 2016), and others show medium-
term effects on language and parent–child social
engagement (Kasari, Paparella, Freeman, & Jahromi,
2008). Working with and through parents in this way
is the best evidenced early intervention to optimise
symptoms and social adaptation, and is also relatively
low intensity compared with therapist-delivered ther-
apy direct to the child. It has the adjunctive benefit of
increasing parental empowerment, family resilience
and self-management, providing the early support for
family self-management and resilience in a chronic
care context as described above (Taylor et al., 2014).
(D) Reactive/step-up care for adjustment and co-
occurring disorder
Into the school years, the life for a child with autism
(and their family) can become stressful and complex,
increasing vulnerability to high levels of mental health
comorbidity. A transactional approach recognises that
difficulties for the child in understanding the environ-
ment are often matched by those of the environment
understanding the child. Formulating this is a crucial
part of designing effective intervention and often ben-
efits from experienced specialist clinical management
within a stepped-care framework (Bower & Gilbody,
2005). Presenting difficulties are often the result of the
autistic child being within a poorly adapted relational,
educational or physical environment; equal attention
therefore needs to be paid to environment adjustment
and management at the individual and societal level as
well as within-child factors; autism aware and respon-
sive environments are key for optimising well-being.
An individualised approach to formulating morbidity
beyond the core symptoms in autism is also essential
because the developmental science of ASD has not yet
fully addressed the pathogenesis of co-occurring con-
ditions; it is likely that the aetiological pathways
involved will importantly differ from those in a neu-
rotypical context. Recent work on the early emergence of
co-occurring anxiety in ASD (Shephard et al., 2018) is a
model for how longitudinal studies could advance
© 2019 Association for Child and Adolescent Mental Health
Delivering autism intervention through development 1355
theoretical understanding and might inform early
intervention. Good quality assessment is needed to
distinguish core autism development from co-occurring
problems and to formulate effective treatment planning.
In the absence of autism-specific evidence for
comorbidity intervention, National Institute for
Health & Care Excellence (2013) recommended use
of already evidenced interventions for specific
comorbidities, with appropriate adaptations – exam-
ples would include ADHD (stimulant medication
management; family guidance), Anxiety (adapted
CBT and/or anxiolytics), Mood disorder (adapted
psychotherapy or SSRI) and OCD (adapted beha-
vioural intervention, CBT, SSRI). Concerning (or
challenging) behaviours1 are often expression of
anxiety, environmental distress, trauma, or physical
pain and must not just be treated symptomatically.
Once remediable cause is excluded, ASD-adapted
individual parent training has good but nonrepli-
cated evidence for conduct disorder symptom reduc-
tion (Bearss et al., 2015), in severe cases medication
management with neuroleptics such as Aripiprazole.
(E) Case management, transitions, coconstruction of
treatment targets
Ongoing clinical Case Management ideally would
provide support to sustain family self-care and
resilience (Taylor et al., 2014) and be the interface
between this and multiagency collaborative care
between health, social care and education. Its imple-
mentation would reflect a health system designed
around ASD is an enduring condition, rather than
one reactive to the ‘tyranny of the urgent’ (Boden-
heimer, Wagner, & Grumbach, 2002). However how
practical is this? We have seen that guidance docu-
ments such as National Institute for Health & Care
Excellence, 2013 do recommend provision of case
management, but with little process detail. Its effec-
tiveness is not yet empirically researched in ASD, and
for that reason, the notion is vulnerable within a
highly stretched resource environment – replication
of the Collaborative Care Model research (Archer
et al., 2012) in ASD would be a real advance. Never-
theless, it has clinical face validity and could be
facilitated by for instance newer digital tracking
technologies and online communication.
As part of individuation in later development, many
autistic children and adolescents will increasingly set
their own treatment goals in collaboration with fam-
ilies and professionals. These goals may appropriately
differ from those established with families in early
childhood. There is the important process of incorpo-
rating autism within the individual’s felt identity and
the usefulness of diagnostic descriptors as part of
that. Increasingly, the intervention work will be with
the adolescent themselves, at the service of their
adjustment into adulthood and transition planning.
There is little good evidence of specific effectiveness,
but informed case management is intuitive.
1356 Jonathan Green
Summary
Models of management for enduring conditions,
combined with current evidence on autism interven-
tion, combine to support an integrated proactive and
phased developmental model of management in ASD
from prediagnosis through early development.
Before formal diagnosis, there is preliminary evi-
dence to support the value of parent-mediated
intervention from infancy to optimise early social
development in at-risk groups. Postdiagnostic psy-
cho-education and adaptation support should be
followed by an evidenced time-limited parent-medi-
ated social communication intervention to reduce
symptom severity, optimise early social development
and increase family empowerment and resilience.
Interventions which have demonstrated long-term
effect on symptoms and development should be
prioritised. Family key working should ideally be
introduced during this time within a local autism
virtual expert team, to extend support and reinforce
family resilience. Later, there should be timely
access to more intensive step-up care if needed for
emerging secondary problems. Case management
continues to support the family as needed through
predictable transitions and unpredictable life events.
Much of this pathway, as we have seen (viz A,C,D
above), is now evidenced with specific interventions.
Clinicians and commissioners thus now have the
tools to promote efficiency by evolving practice
towards such proactive evidenced care in the context
of self-management and a stepped-care framework.
Further research will be needed to test whether
combining these components in sequence as
described would indeed confer additive value on
long-term outcomes and/or child and family well-
being, or be cost-effective in doing so.
Acknowledgements
The author has declared that he has no competing or
potential conflicts of interest.
Correspondence
Jonathan Green, Child and Adolescent Psychiatry,
University of Manchester, Room 3.311 Jean McFar-
lane Building, Oxford Road, Manchester, M13 9PL,
UK; Email: jonathan.green@manchester.ac.uk
Note
1. I suggest the term ‘concerning behaviours’ in this
context. There is widespread (and often under-
standable) resistance from parents and others to
‘disruptive/oppositional behaviour’ terminology
here, which can be felt to stigmatise parenting
and channel families into inappropriate CD/ODD
‘parent-training’ intervention, an important
dynamic behind the so-called ‘Pathological De-
mand Avoidance’ concept.
J Child Psychol Psychiatr 2019; 60(12): 1353–6
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Accepted for publication: 23 July 2019
First published online: 9 October 2019
© 2019 Association for Child and Adolescent Mental Health