FOI 24/25-0367 DOCUMENT 2

Autism spectrum disorder Disability Snapshot

SGP KP Publishing

Exported on 2024-10-18 03:09:45

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SGP KP Publishing – Autism spectrum disorder Disability Snapshot

1 What is autism spectrum disorder …………………………………………………………………………. 4

2 How is autism spectrum disorder diagnosed? ……………………………………………………….. 5

3 Language and terminology ……………………………………………………………………………………. 6

4 Enabling social and economic participation …………………………………………………………… 7

5 Barriers to achieving economic and social participation ………………………………………… 8

6 How can I tailor a meeting to suit a participant with autism spectrum disorder? …… 10

7 Peak body consulted …………………………………………………………………………………………… 12

8 Helpful links ………………………………………………………………………………………………………… 13

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SGP KP Publishing – Autism spectrum disorder Disability Snapshot

This Disability Snapshot provides general information about autism spectrum disorder to assist you in communicating effectively and supporting the participant in developing their goals in a planning meeting. Each person is an individual and will have their own needs, preferences and experiences that will impact on the planning process. This information has been prepared for NDIA staff and partners and is not intended for external distribution.

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SGP KP Publishing – Autism spectrum disorder Disability Snapshot

1 What is autism spectrum disorder

Autism spectrum disorder (ASD), referred to as “autism” in the remainder of this snapshot, is the collective term for a group of neurodevelopmental conditions affecting the brain’s growth and development. Autism can affect the way individuals interact with others and how they experience the world around them.

Autism is a life-long condition which can impact, to varying degrees, all areas of a person’s life, including social communication and social interaction.

The behavioural features of autism are often present before a person is three years of age but in others they may not be recognised until their school years or later in life. The developmental challenges, signs and/or symptoms can vary widely in nature and degree between individuals, and in the same individual over time – that is why the term “spectrum” is used.

Autism has a strong genetic base so there may be multiple diagnoses or related conditions within a single family and their extended family.

A person living with autism may experience:

challenges with communication and interacting with others
repetitive and different behaviours, moving their bodies in different ways
strong interest in one topic or subject
unusual reactions to what they see, hear, smell, touch or taste
preference for routines and dislike of change.

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SGP KP Publishing – Autism spectrum disorder Disability Snapshot

2 How is autism spectrum disorder diagnosed?

Autism is diagnosed on the basis of behavioural presentation and developmental history. Careful developmental monitoring of social attention and communication behaviours in early life can lead to early identification and referral for a diagnosis. A reliable diagnosis is possible from as early as 18 to 24 months of age. Some people may be diagnosed in later childhood, adolescence or adulthood. Diagnosis is ideally undertaken by a multidisciplinary team with allied health and medical expertise. The DSM 5 is the most commonly used diagnostic criteria in Australia.

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SGP KP Publishing – Autism spectrum disorder Disability Snapshot

3 Language and terminology

Terminology can be a sensitive subject and reflects a range of personal perspectives.

Some families and individuals prefer “person first” language for example, “I am a person with autism”. Others prefer “identify first” language, for example, “I am autistic”.

You should let the participant take the lead in describing themselves, their disability and their preferred terminology. Use their preferred terminology consistently in all meetings and correspondence.

Common terms used include:

DSM-5 - the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition. It is published by the American Psychiatric Association and is the most commonly used tool across the world for diagnosing psychiatric conditions and disabilities
neurodiversity - the concept that neurological differences are a natural part of human diversity. It highlights sensitivities to words like “disorder” and “cure”
neurodivergent - is a broad term meaning atypical neurology; meaning there is a general functional difference
neurologically typical (also referred to as NT) - a reference for people who are not on the autism spectrum.

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SGP KP Publishing – Autism spectrum disorder Disability Snapshot

A person’s support needs for social and economic participation will vary depending on their strengths and level of function.

Data from the Australian Bureau of Statistics Survey of Disability, Ageing and Carers (2015) indicates people with autism experience poorer outcomes compared to other disability groups in relation to education, economic participation, social participation and independent living. Consider supports that reduce these barriers such as capacity building or support coordination. Planning for transitions from school to higher education or work is also important.

NDIS funding can support people with autism to build life skills, capabilities and independence. It can give them a greater understanding of what their interests are and what work might be suitable. It can assist them build specific work related skills which could support them to engage with other government services such as Disability Employment Services (DES).

Work adjustments or NDIS funding for specialist disability assessment services can help create opportunities for jobs to be adapted to meet the capabilities and strengths of the individual and to address access and lived challenge barriers as described below.

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SGP KP Publishing – Autism spectrum disorder Disability Snapshot

Likely barriers to achieving similar levels of independent living, education, economic and social participation to other disability types were identified in the ABS Survey (2015) and are listed below.

NDIS supports can assist to address some of these barriers and improve access to social and economic participation for people with autism. Funding for capacity building can support participants build their planning, organisation and independent living.

Support coordination can connect participants with services and providers for assessment and support. For example, referral to a specialist providers such as an occupational therapist can help arrange adjustments to the physical environment for school, work or social activities.

Societal attitudes

lack of public awareness and understanding regarding autism and how it impacts on daily living
negative media portrayal of autism

Accessibility challenges

access to timely and affordable assessments, including an understanding of the functional impact for the individual
access to timely and appropriate supports and services following initial diagnosis and as needs change over time
structures or physical features of the built environment, for instance lighting, noise, smells, colours, crowding
mainstream and specialised supports and services not understanding autism or taking individualised approaches

Lived challenges

cognitive and social differences
difficulties with planning and organisation
failure of agencies and services to work in partnership with the individual and their friends/family to understand and address needs
experiencing bullying and harassment in schools, community settings and workplaces
failure of mainstream and disability services to provide reasonable adjustments in education and work settings
the specific characteristics of autism (difficulties in social interactions and communication, inflexible behaviours and routines, and executive function difficulties)

SGP KP Publishing – Autism spectrum disorder Disability Snapshot

may lead to increased difficulty in relationships, completing education, gaining and maintaining employment, housing and health care

failure of services to recognise other health conditions (comorbidities) such as anxiety, stress and depression.

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SGP KP Publishing – Autism spectrum disorder Disability Snapshot

6 How can I tailor a meeting to suit a participant with autism spectrum disorder?

Before a meeting

In preparation for a meeting:

provide detailed information about how and where to present for a meeting and what the planning process will cover. Many people with autism find new events or tasks difficult and may need
provide information at least five days before a meeting, where possible
offer a choice of meeting options such as, face to face, phone, using written and/or verbal information
inform the individual a support person can attend
if the meeting needs to be re-scheduled or the Agency staff member attending changes, give as much advance notice and explain the reason for the change
gather information about autism and the person you are meeting with. The participant and their support person are best placed to inform you about their needs and experience living with autism.

Communication during a meeting

When communicating during a meeting:

anticipate the participant may not make eye contact
consider the sensory environment, for example, sound, lights and invite the participant to use supports to stay calm, such as, fidgets
simplify your language and use key words, natural gestures and pictures where appropriate. Be prepared that the individual’s understanding of verbal communication could be very literal
allow time for processing information if necessary. Pause periodically, to allow questions and check for understanding
use positive statements as it is easier to understand positive sentences that say what to do, rather than what not to do
sit side by side rather than face to face
acknowledge anxiety. If the individual keeps coming back to a particular issue, be patient and allow time to answer the necessary questions to put their mind at ease
make things as predictable as possible, including running the meeting to time
allow for gender differences in the presentation of autism. Females in particular can be adept at masking their symptoms and tend to show less severe social and communicative symptoms. Be prepared to use gentle probing questions and draw on a range of evidence sources to identify their support needs

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SGP KP Publishing – Autism spectrum disorder Disability Snapshot

consider many individuals view their autism as an important and valued part of their personal identity. They don’t see their autism as a condition that needs to be “fixed or cured
be aware that parents attending the meeting may also be highly stressed and anxious or may also be a person with autism.

Planning considerations

Things to consider when developing or reviewing a participant’s plan:

focus on the functional impact of the diagnosis. Verifying the diagnosis or interpreting reports made by health professionals can be frustrating for families and individuals who have undergone an extensive (and costly) diagnostic process
include support coordination where there are complex needs or other health conditions (comorbidities) that cross health, disability, community, housing and/or employment sectors
consider and plan for life stage transitions, such as primary to high school or school to work
remember people with autism have individual and unique needs which can change throughout their life. It is best not to make assumptions based on your existing knowledge and experience of autism.

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SGP KP Publishing – Autism spectrum disorder Disability Snapshot

7 Peak body consulted

In developing this resource we consulted with the Australian Autism Alliance, who consulted with the following partners and supporters:

AEIOU Foundation
Amaze
Autistic Self Advocacy Network (ASAN AUNZ)
Australasian Society for Autism Research (ASfAR)
Autism Asperger Advocacy Australia (A4)
Autism Association of Western Australia
Autism Co-operative Research Centre (CRC)
Autism Queensland
Autism SA
Autism Spectrum Australia (Aspect)
Autism Tasmania
I CAN; and
Autism Awareness Australia.

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SGP KP Publishing – Autism spectrum disorder Disability Snapshot

8 Helpful links

For further information refer to:

Australian Autism Alliance
Raising Children
Autistic Self Advocacy Network
Autism Aspergers Advocacy Australia
I Can Network

See also, service providers who are partners of the Australian Autism Alliance:

Amaze
Autism Spectrum Australia
AEIOU Foundation for Children with Autism
Autism Queensland
Autism South Australia
Autism Tasmania
Autism Association of Western Australia
Other Autism Organisations

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