Autism spectrum disorder Disability Snapshot

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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.

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.

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

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allied health and medical expertise. The DSM 5 is the most commonly used diagnostic criteria in Australia.

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.

Enabling social and economic participation

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).

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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.

Barriers to achieving economic and social participation

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

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 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) 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.

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

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 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  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

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 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.

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.

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

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 Autism Queensland  Autism South Australia  Autism Tasmania  Autism Association of Western Australia  Other Autism Organisations

Version control

Version Amended Brief Description of Change Status Date by

2.0 ZWECKM Changes to better reflect that autism can APPROVED 2019-08-30 present differently in women and girls. New information added to myths section and to general considerations in tailoring a meeting. As females with autism can be more adept at masking their symptoms, the use of gentle probing questions and seeking other evidence sources to determine supports is recommended.

Class two approval.

3.0 NAN927 Annual review. APPROVED 2020-04-28

Class 1 Approved

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APPENDIX A

Common misconceptions about autism spectrum disorder

Some facts about autism are shown below against some common misconceptions.

 Autism neurology is life-long.

  • A misconception is that Autism is only a childhood condition.  Many individuals are not comfortable making eye contact while others may focus on

other parts of the face or body to gain some meaning from non-verbal

communication. Although some people with autism are able to make eye contact,

forced eye contact may limit the individual’s capacity to listen.

  • A misconception is that people with autism don’t look at you.  Most people with autism want to have friends but often face challenges knowing how

to make and keep friends. Sensory differences, social anxiety and difficulties with

executive functioning (executive functioning definition: the cognitive processes that

help us regulate, control and manage our thoughts and actions) can also present

challenges in managing and making plans for social interaction.

  • A misconception is that people with autism are not interested in social interaction.  People with autism experience emotions and feel empathy, often very intensely.

However, they may communicate or perceive them differently.

  • A misconception is that people with autism do not experience emotions or show empathy.  People with autism and in particular, girls and women tend to use social

camouflaging to mask their sensory differences and social anxiety. Capacity and

support needs should be determined based on a range of evidence not just their

presentation during an appointment.

  • A misconception is that people with autism who present well socially require less support.  A label such as “low functioning” discounts a person’s strengths and likewise a label

of “high functioning” can lead to missing a person’s needs. This is the same for

phrases such as “severe autism” and “mild autism”. It is important to focus on the

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support requirements of individuals, so these assumptions are not made. Functional

capacity will also vary according to the task and the environment.

  • A misconception is that people with autism may be “high functioning” or “low functioning”.  Currently, professionals commonly diagnose autism using DSM-5 criteria,

introduced in 2013. A diagnosis made before this time may not include severity level

ratings but the diagnosis remains valid. A re-diagnosis is not required. Diagnosis

using DSM-5 is based on two areas, social communication and restricted repetitive

behaviours or interests. There are three severity levels in each area. Severity levels

also vary according to context and can fluctuate over time.

  • A misconception is that everyone diagnosed with autism has a “severity level rating”.  People with autism generally have an uneven developmental profile, meaning that

their level of ability may differ across different skills. All people with autism have

strengths and in some cases a person may display remarkable abilities or a

particular skill which may be described as a ‘savant skill’.

  • A misconception is that all people with autism have a savant skill (an exceptional skill or brilliance in a field).  Although some people with autism do not have other conditions, many do. Some of

the other common conditions people with autism may be diagnosed with include:

intellectual disability, language disorder, attention deficit/hyperactivity disorder,

specific learning disorders, sensory processing disorder, developmental coordination

disorder, anxiety disorders, depression, epilepsy, connective tissue disorders that

effect the joints and ligaments in a person’s body and Fragile X Syndrome (linked to

X chromosome leading to intellectual disabilities and cognitive impairment).

  • A misconception is that people with autism do not have other conditions or disorders.  The way autism is diagnosed has changed. We now recognise a wider range of

characteristics as forming part of the autism spectrum. Also, as awareness

increases, parents and professionals are better able to identify the signs of autism.

  • A misconception is that there is an autism epidemic.

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 No two people on the autism spectrum are alike. All people on the autism spectrum

are different and will experience the effects of autism in different ways. Many people

with autism enjoy family, friends, have a sense of humour and participate in all

aspects of society. People with autism are more likely to be victims of violence

rather than perpetrators of violence.

  • A misconception is that aggression is a characteristic of autism.

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