Submission to
Select Committee
on Autism
JULY 2020
Enquiries regarding this submission can be directed to:
Debra Parnell
Manager, Policy and Advocacy
Dr Sebastian Cordoba
AASW Senior Policy Advisor – RMIT Industry Fellow
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The Australian Association of
Social Workers
The Australian Association of Social Workers (AASW) is the professional body representing more than 12,000 social workers throughout Australia. We set the benchmark for professional education and practice in social work, and advocate on matters of human rights, discrimination, and matters that influence people’s quality of life.
The social work profession
Social work is a tertiary qualified profession recognised internationally that pursues social justice and human rights. Social workers aim to enhance the quality of life of every member of society and empower them to develop their full potential. Principles of social justice, human rights, collective responsibility and respect for diversity are central to the profession, and are underpinned by theories of social work, social sciences, humanities and Indigenous knowledges. Professional social workers consider the relationship between biological, psychological, social and cultural factors and how they influence a person’s health, wellbeing and development. Social workers work with individuals, families, groups and communities. They maintain a dual focus on improving human wellbeing; and identifying and addressing any external issues (known as systemic or structural issues) that detract from wellbeing, such as inequality, injustice and discrimination.
Autism, neurodiversity and disability
The AASW welcomes the opportunity to make a submission to the Senate inquiry into the services, support and life outcomes for neurodiverse individuals, more specifically people with autism. We want to begin by recognising the importance of language and self-determination. As People with Disability Australia points out “non-disabled people need to be led by, respect and affirm each individual person with disability’s choice of language they use about themselves.”1 While the AASW
1 https://pwd.org.au/resources/disability-info/language-guide/identity-vs-person/
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uses person-first language, as people should not be reduced to their disability, we also recognise the right of every person to use language that best reflects their experience and identity.
We also want to recognise the importance of understanding neurodiversity in relation to Autism. Neurodiversity is the concept that humans don’t come in a one-size-fits-all neurologically “normal”. Neurodiversity is seen as a movement by many towards more equal treatment and more widespread acceptance for those on the spectrum, and with disabilities in general.2
In this document we will use the term people with autism, and in doing so we acknowledge that the term encompasses a wide range of experiences and it is commonly reduced in society to narrow characteristics.
More broadly, social workers prioritise a holistic understanding of the person, seeing their disability as only one aspect of what makes them who they are. This view is driven by a deep belief in the intrinsic worth of all human beings and their inalienable right to dignity and self-determination. Drawing on the significant contribution of the self-advocacy movement, social workers understand that people with disability are a diverse group and have a wide range of experiences, abilities, impairments and potential for development.
Social workers make a distinction between impairment and disability. While impairment refers to the differences in capacity that can cause difficulty in everyday functioning, disability represents the larger and more complex interaction between an individual with impairment and the structures and processes of society. It is not physical, cognitive or sensory impairments that cause disability, but rather the way in which societies fail to accommodate natural aspects of difference between people.
Therefore, social workers adopt a person-in environment approach that includes a focus on the structural and cultural factors that may negatively impact on an individual’s ability to engage with the social world. Social workers believe that all people regardless of difference have the right to be included in society and to have outcomes equal to other citizens.
It is this understanding and commitment that social workers bring when working with people with disability.
Our submission
Our submission is based on the practice and lived experience of our members.
A national strategy
The AASW strongly supports a National Autism strategy to improve the outcomes of people with autism as it provides much needed cohesion, collaboration and integration of services. Where someone lives must not determine the level or quality of services they can receive. Unfortunately, the Australian system of supports is fragmented leading to poorly coordinated services that are not
2 https://autismawarenesscentre.com/un-adopts-new-goals-disabilities/
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client centred and contrary to best practice guidelines. The current model has created ‘professional silos’ where medical, allied health and other workers work independently of each other leading to poor overall services and outcomes, especially for those in lower socioeconomic and disadvantaged groups. The AASW calls on federal and state governments to act on the evidence, highlighting the need for a national and collaborative model that is person centred and human rights focused.
Our members highlight a concerning lack of understanding held by the general community, including professionals that contribute to a concerning lack of consistency in supports. Social workers have highlighted numerous experiences of working with psychiatrists, GPs, Paediatricians, pre-school and school-teachers, to name a few, who, from their reported responses, do not have accurate and current information about autism, in particular from a psychosocial perspective. This lack of widely available consistent, relevant and accurate information means that these important (in gate-keeping roles) and highly influential professionals can compromise and impede therapeutic supports, and capacity to access appropriate community resources in a timely manner, that further reduces best practice and optimal outcomes.
AASW members continually highlight that one of the biggest barriers to consistent, timely and best practice autism support is the misinformation across all sectors of Australian community, even the professional sectors that in many cases are the first point of contact. Public misinformation accounts for potential trauma, especially in relation to stigma and discrimination. A balancing of what autism actually is, for the public’s benefit, would be useful to create more inclusive community cultures. For instance, media attention plays a significant role in this and for example tends to relate autism to violent crimes.
A whole of person approach
The support system currently does not adequately recognise the important contribution that families have in the lives of people with autism. We continue to see medicalised and individualised approaches to supports that fail to appreciate the strengths and needs of families. AASW members highlight that utilising the strength of family supports is profoundly valuable in assisting with skill development and social skills training. Self-regulation and social skills can have a positive impact on life-long social support networks, reducing potential for peer related trauma that makes it more difficult for individuals to operate effectively within society, much less reach their potential.
As indicated above, crucial in optimal outcomes for people with autism, is how that person is received in the community in which they circulate at various times in the life cycle, including, significantly, school. We know from Attachment Theory and Adult Attachment theory, supported by associated neuroscience research, and trauma related theories, how impactful early relational experiences are. Early relational experiences do not simply refer to the primary caregiver-child bond, although it is of paramount importance. Early relational experiences move beyond early childhood and extend to schooling. Unfortunately, the experience of many people with autism and any form of disability is one of exclusion, lack of flexibility and understanding, having significant and traumatic life-long impacts.
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Trauma can significantly hinder a person’s capacity to understand a social context and to appropriately self-regulate in that current context. This severely inhibits social connection, compounds trauma experiences, and reinforces trauma-related themes and narratives around relationships/interactions as dangerous. This results in the person with an unprocessed trauma history left without resources that would otherwise help them to auto affect regulate (self-sooth) and self-manage in healthy ways, such as connection with someone of importance. Without this, they are vulnerable to self-soothing through unhealthy means, including substance abuse, self-harm and eating disorders. Trauma clearly compromises life outcomes.
Schools are key social institutions and there needs to be greater resourcing and training to assure that students and school staff understand autism in order to be able to adequately support individuals and families. While there are great resources and efforts across Australia, there needs to be greater incorporation of non-educational professions in schools, like social workers, who can contribute their knowledge of social, emotional and developmental needs and how they can impact learning if they are not met.
Autism and mental health
There is significant research to demonstrate that people with autism are more likely to experience mental health issues than the general population, with studies showing 50–70% of people also experience mental health conditions. 3 The most common mental health conditions experienced by autistic people are depression, anxiety disorders and/or obsessive-compulsive disorder.
As Amaze points out:
“There are many barriers that make it harder for autistic people to get the right mental health care. These can include low autism awareness and understanding by mental health practitioners, communication difficulties (particularly when a person is non-verbal), sensory sensitivities and a lack of coordination and collaboration between mental health, mainstream health, disability services and other sectors, including education, employment, justice and housing.
Poor autism understanding can lead to healthcare professionals assessing an autistic person’s mental health concerns as simply part of their autism. When this happens, the individual’s mental health issues are often not properly diagnosed or treated, resulting in poor outcomes for their health and wellbeing.”4
Mental health services need to be better resourced and educated to support people with autism, improve autism recognition and understanding, together with improved service coordination and collaboration across sectors.
3 https://www.amaze.org.au/understand-autism/about-autism/mental-health/ 4 https://www.amaze.org.au/understand-autism/about-autism/mental-health/
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Girls and women
Rates of autism prevalence suggest that boys are, on average, 4 times more likely to have autism than girls. But this figure may hide the true incidence of autism in girls and women, with some estimates ranging from 7:1 to as low as 2:1. 5 Our members have raised repeated concerns about the frequency with which girls and women with autism are missed altogether, very notably high functioning individuals.
Social workers reported having worked with numerous individuals who were missed altogether in the education, health and family systems, and seriously compromised as a result. This missing of girls and the subsequent gender bias in autism assessment and support services most certainly puts girls and women at risk, educationally, vocationally, interpersonally, and of experiencing complex and relational trauma that compromises all functioning and the reaching of potential.
We would like to draw attention to Autism Spectrum Australia’s work6 on the gender gap by highlight the following:
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The way that autism is diagnosed is biased towards the ‘conventional’ (male) features, and needs to be modified to be more appropriate for women and girls
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Autism in women and girls is ‘overshadowed’ by a mental health (mis)diagnosis (e.g. anxiety, depression, eating disorders)
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Quietness or shyness in a girl is considered ‘normal’ due to stereotypical social expectations of females
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Females on the autism spectrum are more socially motivated to engage with peers leading to a missed diagnosis
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Women and girls on the autism spectrum are better able to camouflage or mask their challenges through social imitation which results in them not receiving a diagnosis
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Of course, it is also possible that autism may actually occur more frequently in males than females, as is the case for a number of developmental conditions; however the current gender gap might be larger because of all the factors listed above
This includes recommending the following strategies to support the wellbeing of girls and women on the autism spectrum:
- Provide support and education, especially regarding safety
- Create a space where you can talk openly about anything
- Provide structure and routine, and work together on strategies to help them to cope with life
- Understand and acknowledge strengths
- Recognise and openly discuss the challenges of being female on the autism spectrum, this can be very validating
5 https://www.autismawareness.com.au/could-it-be-autism/autism-and-girls/ 6 https://www.autismspectrum.org.au/uploads/documents/Fact%20Sheets/Aspect-Research-girls and-women-on-the-autism-spectrum.pdf
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- Consider seeking professional support for distress tolerance, mindfulness or cognitive behaviour therapy (CBT)
Appropriate supports
Evidence shows that people with autism benefit from social and emotional interaction supports, including reading cues and hence learning to recognise, respond to and apply healthy and appropriate limits and boundaries.7 This is most particularly crucial in adolescence and early adulthood when they are starting out with engaging in sexual interactions. Children and young people need support to learn how to cognitively and interactionally read social and emotional cues in others. The benefits of early support provide improved life-long outcomes.
Social inclusion and participation within the economy and community is clearly a distinct problem. For social inclusion and participation in community and work force, people need to be received with far greater understanding, that translates into dignity and respect, and acceptance. Related, is the discussion around the need for varying supports across life stages. Commonwealth, state and local government services are required to meet the needs of people with autism at all life stages. Again, autism supports is not simply a service required in early childhood. We need a consistent approach to supports that recognise the changes in need across life and different stages, including independence and starting a family.
Conclusion
We welcome the opportunity to make a submission to this inquiry and discuss any of the points raised
7 https://www.learningforlife.com.au/useful-resources/
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