Appendix 3

Additional supporting material

This appendix provides further supporting material that is referred to through the main report.

Appendix 3.A — DSM-5 Autistic Diagnostic Criteria

The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) is the standard for diagnosing autism spectrum disorder. The table below outlines the autistic diagnostic criteria as referred to in chapter 2.
Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history
Deficits in social-emotional reciprocity
For example, abnormal social approach and failure of normal back-and-forth conversation; reduced sharing of interests, emotions; failure to initiate or respond to social interactions.
Deficits in nonverbal communicative behaviours used for social interaction
Poorly integrated verbal and nonverbal communication; abnormalities in eye contact and body language; total lack of facial expressions and nonverbal communication.
Deficits in developing, maintaining, and understanding relationships
Difficulty adjusting behaviour to suit social contexts; difficulty sharing imaginative play or in making friends; absence of interest in peers.
Restricted, repetitive patterns of behaviour, interests, or activities, as manifested by at least two of the following, currently or by history
Stereotyped or repetitive motor movements, use of objects, or speech
Simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases.
Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behaviour
Distress at small changes, difficulty with transitions, rigid thinking patterns, need to take same route or eat same food every day.
Highly restricted, fixated interests that are abnormal in intensity or focus
Strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest.
Hyper- or hypo-reactivity to sensory input or unusual interests in sensory aspects of the environment
Apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement.
Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life)
Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning
These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay
Source: Autism Speaks, Autism Diagnosis Criteria: DSM-5, (accessed 23 June 2021).

Appendix 3.B — The Scottish Strategy for Autism 2011–2021


That individuals on the autism spectrum are respected, accepted and valued by their communities and have confidence in services to treat them fairly so that they are able to have meaningful and satisfying lives.


Dignity: people should be given the care and support they need in a way which promotes their independence and emotional well-being and respects their dignity.
Privacy: people should be supported to have choice and control over their lives so that they are able to have the same chosen level of privacy as other citizens.
Choice: care and support should be personalised and based on the identified needs and wishes of the individual.
Safety: people should be supported to feel safe and secure without being over-protected.
Realising potential: people should have the opportunity to achieve all they can.
Equality and diversity: people should have equal access to information, assessment and services; and health and social care agencies should work to redress inequalities and challenge discrimination.

Outcomes and priorities (for 2018–2021)

A healthy life: autistic people enjoy the highest attainable standard of living, health and family life and have timely access to diagnostic assessment and integrated support services.
Choice and control: autistic people are treated with dignity and respect and services are able to identify their needs are responsive to meet those needs.
Independence: autistic people are able to live independently in the community with equal access to all aspects of society. Services have the capacity and awareness to ensure that people are met with recognition and understanding.
Active citizenship: autistic people are able to participate in all aspects of community and society by successfully transitioning from school into meaningful educational or employment opportunities.


Foundations (by year two)

Access to mainstream services where these are appropriate to meet individual needs.
Access to services which understand and are able to meet the needs of people specifically related to their autism.
Removal of short-term barriers such as unaddressed diagnoses and delayed intervention.
Access to appropriate post-diagnostic support for families and individuals (particularly when there is a late diagnosis).
Implementation of existing commissioning guidelines by local authorities, the NHS, and other relevant service providers.

Whole-life journey (by year five)

Access to integrated service provision across the lifespan to address the multi-dimensional aspects of autism.
Access to appropriate transition planning across the lifespan.
Consistent adoption of good practice guidance in key areas of education, health and social care across local authority areas.
Capacity and awareness-building in mainstream services to ensure people are met with recognition and understanding of autism.

Holistic-personalised approaches (by year 10)

Meaningful partnership between central and local government and the independent sector.
Creative and collaborative use of service budgets to meet individual need (irrespective of what the entry route to the system is).
Access to appropriate assessment of needs throughout life.
Access to consistent levels of appropriate support across the lifespan including into older age.

Implementation and reporting

An Autism Strategy Review Group was established to help monitor and coordinate implementation of the strategy. The Autism Strategy Review Group reports regularly to the Cross-Party Group on Autism. In 2020, the Cross-Party Group published a progress report on implementation of the strategy. In 2021, the impact of the strategy will be evaluated and reported to the Scottish Parliament.

Appendix 3.C — National strategy for autistic children, young people and adults: 2021–2026 (UK)

Priority areas

Improving understanding and acceptance of autism within society.
Improving autistic children and young people's access to education, and supporting positive transitions into adulthood.
Supporting more autistic people into employment.
Tackling health and care inequalities for autistic people.
Building the right support in the community and supporting people in inpatient care.
Improving support within the criminal and youth justice systems.

Key steps in 2021–2022

Improving public understanding of autism and inclusion across the public sector.
Making transport and communities more autism-inclusive.
Improving educational professionals’ understanding of autism and inclusive cultures within schools.
Improving how the Special Educational Needs and Disability system supports autistic children and young people.
Supporting positive transitions into adulthood.
Continuing to support autistic children and young people during the COVID-19 pandemic.
Improving employment support and the welfare system.
Including autistic people in plans for restoration and recovery from the COVID-19 pandemic.
Improving early identification and reducing autism diagnosis waiting times.
Improving health and care professionals’ understanding of autism.
Reducing the health and care inequalities autistic people face.
Improving crisis prevention and avoidable admissions into inpatient settings.
Improving the quality of inpatient care for autistic people and facilitating timely discharges from inpatient care
Addressing the use of restrictive practice
Improving understanding of autism across the criminal and youth justice systems
Improving access to services for autistic people in touch with the criminal and youth justice systems

Enabling actions

Improving autism research, innovation and examples of best practice.
Improving data collection and reporting to monitor implementation of the strategy and drive system improvement,
Strengthening governance, leadership and accountability.

Implementation and reporting

The full list of commitments in 2021–2022 is set out in the national strategy implementation plan. Implementation will be overseen by an Executive Group that reports directly to the relevant Ministers at biannual accountability meetings. Progress will be monitored against measures of success defined in the national strategy implementation plan.

Appendix 3.D — National funding and initiatives supporting autism research

Autism CRC
The Autism CRC was established as the world's first national autism cooperative research centre. Initial funding for the Autism CRC included $31 million from the Australian Government, as well as over $74 million in cash and in-kind contributions.
The Autism CRC also receives funding from other Australian Government and state and territory government grants, as well as cash and in-kind contributions from participating universities and organisations.
The Autism CRC undertakes innovative research to directly improve the lifetime prospects of individuals with autism, provide guidance, support and direction for their families, and enable medical practitioners, educators, therapists, support workers and employers to work effectively with people with autism.
The Autism CRC provides government with access to robust, contemporary evidence about best practice.
National Health and Medical Research Council (NHMRC)
The NHMRC is the Australian Government’s main health and medical research funding body.
The Australian Government allocates funds for health and medical research primarily through the Medical Research Endowment Account (MREA) and the Medical Research Future Fund (MRFF).
NHMRC administers the MREA and some MRFF funds through grant programs.
Since 2010, the NHMRC has provided $33 826 231 in funding towards autism research.
Autism Specific Early Learning and Care Centres (ASELCCs)
The Department of Social Services has funded six ASELCCs to collect clinical data, held in a centralised database, and to conduct and publish research to further understanding of best practice early intervention for children with autism and the efficacy of the ASELCC model for children and families.
By June 2018, the ASELCCs and associated research institutions and partners had published 57 peer reviewed academic publications and five research reports.
Medical Research Future Fund (MRFF)
The MRFF provides grants to support health and medical research and innovation to improve the health and wellbeing of Australians. It operates as an endowment fund with the capital preserved in perpetuity. At maturity, the MRFF will reach $20 billion.
The MRFF provides a long-term sustainable source of funding for endeavours that aim to improve health outcomes, quality of life and health system sustainability. The MRFF is in addition and complementary to research funding through the NHMRC.
MRFF investments are guided by the Australian Medical Research and Innovation Strategy 2016–2021 and related set of Australian Medical Research and Innovation Priorities 2018–2020 developed by the independent and expert Australian Medical Research Advisory Board following extensive national public consultation.
$2.5 million over five years is being provided from the MRFF – Emerging Priorities and Consumer Driven Research Initiative from 2019-20 to understand the causes of autism.
Disability Research Strategy
In December 2019, the Disability Reform Council agreed to a disability research strategy with the Australian Government already committing:
$15 million for the development of the National Disability Data Asset; and
$2.5 million to the Melbourne Disability Institute at the University of Melbourne to further develop a National Disability Research Partnership with other interested research and community organisations.
Over the next three years, the disability research strategy will seek to:
establish a national framework and approach to collaboration on shared research priorities across government;
build capacity, capability and partnerships within the disability research community;
improve the quality, availability and utility of data to inform disability research; and
maximise the value of research in improving service models practicing and outcomes for people with disability in Australia.
Source: Department of Social Services, Department of Education, Skills and Employment, Department of Health, Submission 53, pp. 25–27.

Appendix 3.E — Summary of progress on recommendations from the ECEI Implementation Reset

ECEI Implementation Reset Progress
Explain and rename the early childhood early intervention approach.
Develop and publish new early childhood operational guidelines
Clearly explain developmental delay and practical guidance to make decisions
Explain how the approach to supporting families and children helps them reach their full potential
Create a delegate/planner workforce for young children
In the next 12 months
Working with state, territory and federal governments to find and fill gaps and strengthen services
In the next 12 months
Tailored support for families in remote and very remote areas
In the next 12 months
Publish guidance about what is considered 'reasonable and necessary' when making support decisions for children on the autism spectrum
In the next 12 months
Improving support and information sharing for families when transitioning from the Scheme
In the next 12 months
Focussing on best practice early intervention by making Scheme access decisions under section 25 of the NDIS Act
In the next 12 months
Make the 'provider outcomes report' mandatory to evaluate provider's effectiveness in delivering supports and services
In the next 12 months
Improve provider compliance with NDIS Best practice standards on early childhood supports and increase awareness of these providers
In the next 12-24 months
Help early childhood partners give families clear advice about the best providers for their child and situation
In the next 12-24 months
Understand what disadvantaged and vulnerable families need, and create culturally appropriate services and resources
In the next 12-24 months
Help partners connect with more families in communities experiencing hardship or disadvantage
In the next 12-24 months
Help families connect to local support networks and services
In the next 12-24 months
Do more research on outcomes for young children after receiving early intervention support
In the next 12-24 months
Increase partner capacity to provide more short-term early intervention support for children under 6 with developmental concerns
Over the next 24 months
Increase capacity and flexibility of early childhood providers to help families navigate NDIS plans and connect to supports
Over the next 24 months
Change the age limit for the early childhood approach to children younger than 9
Over the next 24 months
Introduce a 'capacity building support in natural settings' item in the NDIS Price Guide
Over the next 24 months
Create a transition plan to help children and families move to the next stage of their lives
Under review, may not be required
A tailored independent assessments approach for young children and their families
Source: ECEI reset recommendations update, (accessed 21 December 2021)

 |  Contents  |