The aim of My Life My Decisions is to facilitate a multi-disciplinary approach to sharing, discussion and learning in order to create new knowledge and practice that will identify and address key barriers and enable individuals on the autism spectrum to develop and exercise self-determination and express their “voice” across the lifespan.
My Life My Decisions’ objectives are to:
- facilitate the voice and self-determination of individuals on the autism spectrum and their families
- facilitate the provision of support and targeted services that enhances the lives of people with Autism and their families
- facilitate self-knowledge, goal setting, self-regulation, and problem solving for individuals on the autism spectrum
- support an individual’s ability to accomplish their goals in life through a variety of support services
- advocate on behalf of, to promote and to protect the interests and well-being of all persons with autism and their families
- develop and empower people with autism
- promote knowledge, understanding and awareness of the problems and behaviour of persons who may be diagnosed as having Autism, within the community.
- promote and/or undertake activities for the education, training, employment and well-being of persons with autism and their families.
- encourage and support the parents and siblings of individuals with autism
- engage in research into Autism and allied conditions;
- consult with Government Departments and other agencies to assist with funding and services to people with Autism and their families.
Terms of Reference:
Statements of Affirmation
My Life My Decisions Inc. is comprised of individuals who offer different perspectives, experiences and knowledge, but who all share an interest in promoting the self-determination and voice of individuals on the autism spectrum. Members represent autistic adults, parents of children on the autism spectrum, professionals working in areas of service delivery, and researchers aiming to advance knowledge and practice related to the domain. To guide us in our interactions, the following guidelines and points of agreement are proposed.
- We acknowledge that we are a diverse group with differing knowledge, perspectives and experiences and confirm the value that these different perspectives are an essential aspect of developing a shared understanding of the domain and the creation of new practice.
- We affirm the right of everyone to disagree and to express their view.
- We recognize that we will not and do not aim to agree on all issues, but will work to develop a collective understanding of the issues involved and practice required by listening and acknowledging the perspectives of others.
- We acknowledge the right of everyone to participate in their own way and will support the different ways that members interact and communicate.
- We agree to provide supports and flexible strategies to support members ability to participate fully and equally.
- We agree to work together to fulfill the following principles of partnership in our association: communication, equality, respect, trust, competence, advocacy and commitment.
Terms and Use of Language
My Life My Decisions Inc is mindful of how identification can impact both the individual and the community who views them and that different individuals hold different perspectives regarding terminology. With that in mind, we propose the following regarding the use of terminology and language during interactions and information sharing:
- Identity-first language vs Person-first language. We recognise there are strong arguments for both identity-first language (autistic person) and person-first language (person with autism) when referring to autism. Given our shared focus on empowering self-determination, we recommend the use of identity-first language such as autistic adult or the more neutral term of individual/child/adolescent on the autism spectrum. If at all possible, individuals should be consulted regarding their own preference.
- Gender and pronouns. We acknowledge each individual’s preference of gender identification and use pronouns that they wish to be identified by in all situations. We understand that there may be occasions when identification is incorrectly used by accident, acknowledge mistake and continue on with discussion with correct pronoun use.
- Autism spectrum disorder (ASD). ASD is preferred terminology instead of autism spectrum condition (ASC) for academic and diagnostic purposes and should be used when discussing issues around diagnosis and not as a label or description of an individual.
- Asperger syndrome (AS), Asperger’s, and the personal identifying term of aspie. We recognize that Asperger syndrome was removed from the current Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and was brought together under the Autism Spectrum Disorder classification. We respect those who wish to be identified with AS instead of autism as this is individual preference and choice.
- High and low functioning. We agree that the terms high-functioning and low functioning are misleading and potentially segregating description of people on the autism spectrum. Instead, we will endeavor to use language that describes specific attributes or characteristics (i.e. level of support needed, communication differences, etc.).
- Neurotypical (NT) and non-autistic. Preferred terms when referring to individuals who have not been identified as being on the autism spectrum.
- Strengths-based vs Deficits-based language.
- We encourage all members to take the strengths-based approach, referring to autism as a condition or disability, not as a disease or illness.
- Use neutral terms such as non-autistic or typically developing instead of normal or healthy.
- Refrain from terms such as “suffering from” or “affected by autism”.
- Use co-occurring instead of co-morbid when attributing secondary conditions.
- We emphasise the use of neutral or positive language when referring to characteristics of autism. For example, communication “differences” instead of “deficits”.
Copyright 2021 My Life My Decisions Inc. ABN 19 397 693