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Developing and testing a functional assessment for individuals on the autism spectrum

Are you an adult with autism or the carer of someone on the spectrum? Would you like to have a say about a new tool for understanding how autism affects daily life?

Curtin University and Telethon Kids Institute researchers are seeking the help of 8 to 12 people on the autism spectrum, and their parents/carers, to form a reference group informing the development of an assessment tool to help measure how people on the autism spectrum participate in daily activity.

About the project/vacancy

The researchers in this project would like to develop a self-assessment functioning tool for adults with autism and their parents/carers. The tool is based on the autism-specific codes of the World Health Organisation, International Classification of Functioning, Disability and Health (ICF).

There are over 1600 codes in the tool describing a person’s functioning across a range of health conditions, some of which are particularly relevant to autism. 

The codes are written by, and targeted, at health professionals; so it may be difficult for consumers to know what the descriptions of the codes actually mean. 

The researchers need help to develop ‘lay person’ or ‘plain language’ definitions of the autism-specific codes to allow people on the autism spectrum and parents and caregivers to complete an assessment of the functioning tool themselves. It is hoped the tool will give a better understanding of how autism affects a person’s daily life.

About the position

The group will help to guide the development of new self-report versions of an assessment of functioning tool for individuals on the autism spectrum and parent/caregivers. The group will be consulted throughout the development process to comment on the research methods and aspects of the assessment tool, including the language and usability of the assessment tools.

What am I expected to do?

You will be invited to join virtual meetings via teleconferencing services, such as Zoom or Skype.  During these meetings, we may discuss:

  • Approaches to include individuals on the autism spectrum and their caregivers in the research project
  • Proposed research methods, including guidance on running effective focus groups and survey design
  • Ways in which the assessment tools could be improved
  • Preferred language for use in the new assessment tools
  • Strategies to share the research findings with the autism and clinical communities

What skills or experience do I need?

We are looking for adults (aged 18 years or over) who are on the autism spectrum,  as well as  parents/caregivers of individuals on the autism spectrum (any age).

We will be conducting the meetings via teleconference so you will need access to the internet to be able to join.

How long am I expected to be involved?

The project will take place over a 12 month period starting in March

Where will meetings be held?

The researchers will organise 3 meetings during 2019 of approximately one hour each.

What support is offered?

$30 per meeting honorarium will be offered and you will be provided with a key contact person to support your involvement in the project.

Applications close: 22 February 2019

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