Speaking Out for Autism Spectrum Disorder (SOfASD) is a group that gives voice to people affected by Autism Spectrum Disorder (ASD) in the Australian Capital Territory (ACT). SOfASD advocates for better services, supports and outcomes for people affect by ASD.
Autism Spectrum Disorder is a diagnosis described in the Diagnostic and Statistical Manual of Mental Disorders, 5th edition (known as the DSM-5) that was published in May 2013. Previously, the 4th edition (known as the DSM-IV) described the diagnostic criteria for pervasive developmental disorders (PDD) where the most common diagnoses were:
- Autistic Disorder,
- Asperger's Disorder and
- Pervasive Developmental Disorder - not otherwise specified (PDD-NOS)
The World Health Organization has its own classification scheme (currently, the ICD-10) that uses different names for the diagnoses in the DSM-IV. A more comprehensive description of ASD (sometimes call "autism") is available at http://a4.org.au/ASDformal.
People who are affected by ASD include:
- autistic people (or people with ASD)
- members of families that include an autistic person
- other carers of autistic people
The limited services and supports for autistic people that currently do exist in the ACT result entirely from the efforts of volunteers and from advocacy and lobbying over an extended period.
SOfASD is the former ACT ASD Political Action Group. SOfASD continues to give people affected by ASD an effective voice in politics and in their community. Unfortunately, people with ASD need a specific voice since many of their outcomes are substantially worse than people with disabilities generally. The inequitable outcome are because services that are designed as generic disability services, or for other particular disabilities, are mostly ineffective for people with ASD. Sometimes, autistic people are denied services they need purely because they have ASD. SOfASD strongly supports people with other disabilities having their needs met; we just want the needs of autistic people recognised and addressed as well so their outcomes are more equitable than currently.
As with most other types of disability, views of people affected by ASD vary about what is needed. Rather than try to reach a single consensus view on all issues, SOfASD accepts that people have varied needs and views about what should to be done. When there is no consensus, SofASD represents the varied views brought to it as effectively as it can. SOfASD leaves it to political decision makers, if they cannot respond to all needs, to decide policy and resource use. SOfASD's role is to ensure politicians have the information they need ... and to press them to act, to make effective decisions.
SOfASD's role is systemic advocacy and community awareness for ASD in the ACT and region. SOfASD functions with minimal costs so it will not raise (or compete with anyone) for funds. Membership is open and flexible. SOfASD is keen to cooperate with other advocates with shared goals.