Submission 24 — Reframing Autism Ltd — Select Committee on Autism

Reframing Autism

Submission to the Select Committee on Autism

(April 2020)

Reframing Autism is pleased to present a submission to the Select Committee on Autism, addressing those articles of the Terms of Reference in which we have expertise and interest.

1. Introduction: Reframing Autism Reframing Autism aims to create a world in which the Autistic community is supported by families and allies to achieve genuine acceptance, inclusion, and active citizenship, and in which Autistic culture and identity are celebrated and nurtured.

Reframing Autism is a company run by and for Autistic people, and for their families and allies. We combine capacity-building and leadership development with education, research, resource development, mentoring, and support to strengthen the Autistic community. We also promote a united community, bridging the divisive gap between the Autistic community (those identified or who self-identify as Autistic) and the ‘Autism’ community (the broader non-autistic community with a connection to Autism).

Through Reframing Autism, Autistic people, and non-autistic families and allies of the Autistic community, come together to understand Autism. We promote equity and acceptance. Our vision and goals align with the Australian National Disability Strategy 2010−2020 and the UN Convention on the Rights of Persons with Disabilities. We are funded under the NDIS ILC schemes for DPFOs and ICB.

Reframing Autism builds hope in the Autistic community by fostering great expectations for a rewarding life grounded in the civil, political and social participation of Autistic people. Reframing Autism also builds hope in the families and allies of Autistic people, moving beyond the narrative of causes, cures and interventions and offering a way to embrace the Autistic community.

Working within the neurodiversity movement, Reframing Autism provides both support and education. Through Reframing Autism, families and allies learn from Autistic people of all ages, to establish inclusion founded in reciprocal respect and a mutually supportive community. It encourages environments in which Autistic individuals can live authentically, and it builds the capacity of families, allies and Autistic people themselves to be leaders and change agents.

2. Terms of Reference a) current approaches and barriers to consistent, timely and best practice Autism diagnosis Recommendation: That the government prioritise and fund research into developing a co-produced national protocol of practice to guide diagnostic communication, and developing Autistic-authored resources to support families and individuals at diagnosis.

Diagnosis is historically, and remains, a contested and controversial subject in the Autism context (Volkmar & McPartland, 2014). Currently, this controversy in parts concerns diagnostic criteria (for example, regarding substantial changes to the fifth edition of the Diagnostic and Statistic Manual of Mental Disorders in 2013; American Psychiatric Association, 2013; Burns & Matson, 2017; Mazurek et al., 2017), and best practice diagnostic tools and processes (Anagnostou et al., 2014; Charman & Gotham, 2013; Ozonoff, Goodlin-Jones & Solomon, 2005), but other issues are also prominent in the literature.

Reframing Autism is interested in an area of diagnosis that is grossly under-represented: that of the impact of diagnostic communication.

Of the studies looking at experiences of diagnosis, most are purely parental, with an emphasis on the diagnostic process (length, tools, assessment procedures, cost, waiting periods) and parents’ satisfaction with it (Abbott, Bernard & Forge, 2013; Goin-Kochel, Mackintosh & Myers, 2006; Mulligan et al., 2012). There has been less interest in understanding the impact of those experiences on parental, and Autistic, perceptions of Autism or in investigating how that impact influences parents’ (and individual’s) choices about interventions and ‘next steps’ (cf. Dale, Jahoda & Knott, 2006; cf. Wachtel & Carter, 2008).

Research into the specific impact of the communication (in terms of both content and style) of an Autism diagnosis on families and individuals is largely lacking, although some studies exist. Abbott, Bernard and Forge (2013) explore parental experiences of the structure, style and content when diagnostic findings were shared with parents and recommend that these experiences should inform the development of best practice guidelines, as Reframing Autism recommends.

Similarly, Brogan and Knussen (2003), who examine the factors and determinants associated with parental satisfaction with the disclosure of a childhood Autism diagnosis, recognise ‘the importance of the interaction between parent and professional during the disclosure interview’ (p. 31). Studies by Banach et al. (2010) and Crane et al. (2016) evidence the need for quality information to be given at diagnosis and emphasise the importance of post-diagnostic support, results which inform Reframing Autism’s recommendation to provide quality resources to families and individuals at diagnosis. Importantly, Crane et al. (2016) conclude that ‘more needs to be done to improve parental experiences and perceptions of the diagnostic process’ (p. 159), including with regards to the provision of quality information at disclosure, and post-diagnostic support.

Most extant studies on parental experiences of Autism diagnosis come from the United Kingdom, with some studies from the United States and elsewhere (for example, France); Australia is vastly underrepresented in this field of research. The dearth of literature from an Australian context is striking given that the Cooperative Research Centre for Living with Autism (Autism CRC) and the National Disability Insurance Agency (NDIA) have together released new guidelines to shape the process of diagnosing Autism in Australia (Whitehouse et al., 2018).

A National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia (Whitehouse et al., 2018) aims to standardise the diagnostic process across Australian states to establish parity and decrease subjectivities and variability in Autism diagnoses. The National Guideline is concerned primarily with the assessment process, offering criteria that are intended to formalise best practice

diagnostic process and ensure the reliable, equitable, comprehensive and transparent Autism diagnosis in Australia. Reframing Autism notes that in the 78-page document, only two pages specifically address the ways in which diagnosticians should communicate a diagnosis of Autism to families and individuals (see Section 11, Sharing Findings, Whitehouse et al., 2018, pp. 47-48). It is Reframing Autism’s recommendation that research be undertaking concentrating on communication rather than process.

In its Sharing Findings recommendations, the National Guideline calls for ‘meaningful’ and ‘appropriate’ communication, ‘facilitated by a tone that encourages understanding and acceptance’ (Whitehouse et al., 2018, p. 47). Given the process-focus of the Guideline, the particulars of what constitutes such an encouraging tone, or what information might promote understanding and acceptance, is not explicated. The National Guideline’s Recommendation 58 of what information should be conveyed to clients and their caregivers at diagnosis gives weight to diagnostic criteria and rationale, severity levels, support needs, and developmental status and functioning, as well as to ‘activity-related and character strengths’ (p. 48). Reframing Autism questions how diagnosticians can best achieve such an encouraging tone and simultaneously communicate necessary information without negatively impacting the mental health and quality of life outcomes of families and individuals, including children (see also Gaspar de Alba & Bodfish, 2011). We call for a protocol of practice for how to achieve the Guideline’s recommendation for a hopeful tenor (Mulligan et al., 2012; see also O’Brien & Daggett, 2006).

Interrogating the moment at which a diagnosis of Autism is first broached with individuals and/or their families, or at which a diagnosis of Autism is shared and communicated to individuals and/or their families, is crucial to accessing how families and individuals react to this information, their immediate decisions, their short- and long-term mental health and quality of life outcomes post-diagnosis, and their approach to and perception of Autism and interventions (Hutton & Caron, 2005). Research into communication will thus ascertain firstly whether individual’s and families’ experiences of having an Autism diagnosis communicated to them are subjective, divergent or idiosyncratic, in terms of manner, content and style, depending on the communicating diagnostician, and, secondly, whether the way in which an Autism diagnosis is communicated has an impact on caregiver and individual attitudes to Autism, mental-health and wellbeing, and decisions about interventions and therapies.

Reframing Autism strongly recommends that research is prioritised and funded to examine the requirements for positive, helpful and respectful diagnostic communication. We further recommend that these requirements are made explicit in the form of a protocol of practice, with clinical guidelines for what, how and when to share an Autism diagnosis (O’Brien & Daggett, 2006), informed by key stakeholder perspectives. We argue that such a protocol of practice, co-produced with the Autistic community, will allow for the kinds of educated, cooperative encounters between diagnostician and clients that result in best practice and best outcomes (Gillman, Heyman & Swain, 2000; Turnbull & Turnbull, 2001).

At present, families and individuals undergo vastly differing experiences of having a diagnosis of Autism communicated to them (Crane et al., 2016). Moreover, research suggests that for some, the medicalised, pathologised and deficit-based frame often offered by diagnosticians can have a negative impact on mental health, decision-making, and forward planning (Chamak et al., 2011; Chamak & Bonniau, 2013; Huws & Jones, 2009; see also Gillman, Heyman & Swain, 2000). Reframing Autism argues that the ideology of Autism that diagnosticians hold impacts on the narrative of Autism they offer to families. That ideology affects the way in which diagnosticians relate to families, and to the newly diagnosed individual themselves. The way in which an Autism diagnosis is delivered, and the ideological classification it receives (for example, as a ‘disorder’, a ‘condition’, a ‘neurodivergence’), are keys factor underlying the way in which individuals and their families understand Autism and communicate that understanding to the broader community.

b) The prevalence of Autism in Australia Recommendation: That the government funds Autism diagnostic processes to establish equitable access to diagnosis and support for Autistic adults.

Using the current CDC estimation of Autism prevalence (1/54), statistically, over 470,000 Australians should meet diagnostic criteria for Autism. In fact, in 2015 there were only approximately 164,000 diagnosed Autistic Australians. Even with improvements in the recognition and diagnosis of Autism, Reframing Autism acknowledges the fact that a significant percentage of Autistic people thus remain unidentified.

In other words, more than half of Autistic Australians are not formally, professionally identified as Autistic. Most of these undiagnosed Autistic individuals are likely to be adults.

As an Autistic-led organisation, Reframing Autism has deep networks and connections to the Autistic community. We can attest to the fact that many Autistic adults self-identify as Autistic but are not officially or professionally diagnosed.

In the Autistic community, self-identification is a valid and legitimate avenue of diagnosis, but such self identified individuals are ineligible to access the kinds of supports (through, for example, the NDIS) which individuals with formal diagnoses can receive.

Importantly, the most often cited reason for self-identified Autistic adults not pursuing formal diagnosis is the monetary cost of diagnosis. That is, self-identified Autistic adults often do not eschew formal diagnosis because they do not need or desire support (psychological, medical or allied health), but rather because they cannot afford to pursue the diagnosis. Without a formal diagnosis, these individuals cannot access funding programs which would ultimately help them to improve their mental and physical health. They are thus denied the same services that their formally diagnosed Autistic peers are offered.

This situation is inherently inequitable. Reframing Autism calls on the government to provide financial support for adults to access formal diagnosis should they so desire.

c) Misdiagnosis and under representation of females in Autism data, and gender bias in Autism assessment and support services

Although Reframing Autism agrees that a gender bias in Autism assessment exists, we argue strongly that the concept of gendered presentation of Autism is misinformed and based on outdated and overly reductive understandings of Autism.

These views, stemming from the Baron-Cohen (2002) theory of Autism and the ‘extreme male brain’, do a disservice to Autistic individuals of all genders. They also adhere to a binary understanding of gender that does not reflect the gender experiences of the Autistic community.

Reframing Autism argues, along with Lai and Szatmari (2020), that ‘appreciating the multilevel sex and gender impacts on presentation, development, and diagnosis is key to sex-equitable and gender equitable care for autistic individuals. A holistic approach to understanding the person in the contexts of sex and gender is essential for timely and accurate diagnosis and support’.

d) International best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity

Recommendations: Reframing Autism recommends that families be given accurate information about the evidence-base for – and against – Applied Behaviour Analysis (ABA) and Early Intensive Behavioural Interventions (EIBIs).

Just as any practitioner has a duty of care to disclose risks and benefits of any intervention, so too, disclosure of the risks of ABA (including the lack of Autism-specific training for practitioners, and the significant risk of PTSS/PTSD) should be disclosed prior to commencement or exposure to ensure proper informed consent requirements.

Furthermore, Reframing Autism recommends that the burden of proof lies with proponents of ABA and EIBIs to prove, through co-produced research, that these interventions are not psychologically harmful.

Reframing Autism calls on the medical professionals who have a duty of care, including the NDIS and other related funding bodies, to question whether it is responsible to recommend or to fund a potentially harmful, restrictive practice, especially given that EIBIs are antithetical to a social model of disability and can offer no proof of long-term safety (Sandoval-Norton & Shkedy, 2019).

We ask whether the majority of the goals of EIBIs – to suppress Autistic neurology and eliminate authentic self-expression – align with the NDIS principles for choice and control.

Summary

Reframing Autism acknowledges that many therapies have the potential to be beneficial for Autistic people at certain stages across their lifespan.

Psychology, Occupational Therapy, Speech and Language Therapy, Music, Art and Physical Therapies,

and enabling communication through the provision of alternative means such as AAC or sign language, may be intrinsic to helping Autistic individuals to manage the challenges inherent in living in a world that is not oriented to an Autistic neurology. We endorse the use of these therapies when they are approached from the strengths-based, citizenship framework that is fundamental to the social model of disability, and when they are utilised to support an Autistic individual to be their best Autistic self.

As an organisation, however, Reframing Autism has grave concerns about the provision of any therapy or intervention which “normalises” Autistic people or suppresses intrinsic Autistic behaviours. We also reject any intervention which suggests (whether tacitly or explicitly) that a non-autistic neurology is superior or even preferable to an Autistic one.

Reframing Autism specifically rejects the use of any therapy or intervention which utilises a system of rewards and punishments to modify Autistic behaviours and train Autistic individuals to act and perform non-autistically, or which are intensive in nature.

EIBIs and ABA

1. EIBIs and ABA as Evidence-Based Practices We note that, in Australia, many families are being recommended ABA as the “only” evidence-based, effective “treatment” or intervention for Autism (Lizard Centre, 2017; Autism Partnership Australia, 2013),

with ABA offered as a family’s best hope of setting their child up for a successful and ordinary, independent life (Grasswill, 2014). This recommendation is coming from some paediatric and diagnostic teams, as well as some service providers themselves (e.g., AEIOU, 2019).

Reframing Autism has severe concerns with the framing of this recommendation, including:

• the inherent conflict of interest in ABA providers prescribing intensive ABA to families;

• the existence of other, non-intensive, non-behavioural therapies that are evidenced to have positive outcomes for Autistic individuals (Lindgren & Doobay, 2011);

• diagnosticians, and ABA and EIBI providers, often present families with only worst-case scenarios about a child’s future, exploiting vulnerable parents with “apocalyptic” conjecturing, into committing to expensive and time-intensive interventions (Lilley, 2011; see testimonials below);

• the conflicting evidence demonstrating the non-efficacy of ABA and EIBIs (e.g., Magiati, Charman & Howlin, 2007; Howlin, Magiati & Charman, 2009);

• the lack of balanced information given to families regarding EIBIs, and

• the lack of genuine choice offered to families at their child’s diagnosis, at which families are often given no choices (ABA is presented as the “only” effective choice), or are given a bewildering array of choices and rely on their own research to make decisions about their child’s therapy (Deyro, Simon & Guay, 2016).

We also note that families usually make decisions about interventions and therapies for their Autistic child shortly after an official diagnosis. Research shows that official diagnoses are often accompanied by dire predictions for a child’s future life outcomes (Chamak and Bonniau, 2013; Laser Beak Man, 2019; Chan, 2019; see above), and parents report pressure to make intervention decisions immediately without delay to get the best outcomes for their child, citing a “window of opportunity” for early intervention (Edwards et al., 2017).

Reframing Autism does not wish to engage here extensively with the claim of an “evidence-base” for EIBIs. It should be noted, however, that a comprehensive 2018 Cochrane review cites significant reservations about the extant evidence for the efficacy of EIBIs, concluding that “there is weak evidence that EIBI may be an effective behavioral treatment for some children with ASD” (Reichow et al., 2018; emphasis added).

Research also challenges the oft-cited evidence that ABA promotes Autistic learning and engagement, suggesting that in fact it exacerbates hyper-specificity and undermines organic Autistic processes of learning (Harris et al., 2015).

More recently, in a report to Congress dated October 25, 2019, the United States Department of Defense stated about its Autism Care Demonstration package, that after a year of ABA treatment, 76% of Autistic participants showed “little to no change in symptom presentation” and, in fact, 9% demonstrated “worsening symptoms”. Equally, Hassiotis et al. (2018), documents no reduction in “challenging” behaviours in clients with intellectual disability receiving reward-based behavioural interventions.

Emerging research moreover indicates that EIBIs are less effective for non-traditionally communicating Autistic children, and that prompt-dependency, reward-expectation, reduced performance quality, difficulty generalising, unquestioning compliance, and learned helplessness characterise the adult Autistic population exposed to EIBIs as children (Sandoval-Norton & Shkedy, 2019). Whilst compliance might superficially seem like a reasonable goal for children, conditioning already vulnerable Autistic individuals to be unquestioningly compliant puts them at even greater increased risk for emotional, physical and sexual abuse.

We also note the existence of research which suggests that EIBIs misinterpret and thus exacerbate self injurious behaviours in children (Shkedy, Shkedy & Sandoval-Norton, 2019), that they stifle organic communication preferences, and that such intensive “therapisation” of the home detrimentally affects the mental health and quality of life outcomes not only for Autistic children, but for their whole family by sacrificing the sense of “intactness” that is fundamental to an individual’s feelings of self-worth, self efficacy, and self-determination (Turnbull et al., 1999).

2. Stated Outcomes of EIBIs With these reservations about the evidenced limitations of EIBIs stated, we wish to engage with the exact outcomes that EIBIs are ostensibly evidenced to produce in Autistic individuals. ABA and other EIBIs have, as their purpose, the “recovery” of Autistic children who become “indistinguishable from their peers” as a result of behavioural intervention (Autism Partnership, 2015).

EIBIs are thus ostensibly evidenced to decrease Autistic “symptomology”, to “improve” Autistic behaviours, and to decrease “challenging”, “undesirable”, “problem”, “interfering”, “non-functional”, “maladaptive” behaviours (Odom et al., 2010; National Autism Center, 2015; Prior & Roberts, 2012).

Such goals, however, reward and promote the concealment or suppression of authentic Autistic self expression, punish organic Autistic behaviours, demean Autism, and frame Autism as a disease or deviance to be cured or treated (Shyman, 2016). As Milton (2018) notes, EIBIs are “highly normative, and unsympathetic to a social model of disability”.

Take, for example, self-stimulatory behaviours (“stimming”), which are often pathologised as deviant or problematic behaviour in EIBIs. As Sandoval-Norton and Shkedy (2019) observe, EIBIs often punish stimming or reward the suppression of stimming. Given the importance of stimming to Autistic self regulation and organic communication as a form of Autistic body language (Kapp et al., 2019), Sandoval Norton and Shkedy (2019) are confident in asserting that:

A lifetime of being punished for certain movements, and being forced to engage in eye contact despite the physiological pain and discomfort of doing so, is psychologicalandphysicalabuse. A lifetime of being forced to sit still with no regard for actual cognitive abilities can createfurtheremotionaland psychologicalharm(p. 4; emphasis added).

3. Ethical Congruence: A Requirement for EBPs Reframing Autism also notes that for practices to be considered “evidence-based”, they need to correspond with the values, preferences and ethical ideologies of parents, care providers and the Autistic individual (National Autism Center, 2015).

That is, evidence-based practices (EBPs) need to epitomise the social and ethical ideologies of Autistic clients, their parents and other stakeholders (such as the NDIS).

We question how EIBIs are consistent with the ideologies of the Autistic community, given the significant and global Autistic protest to EIBIs (Ask an Autistic, 2019).

We equally question how EIBIs are consistent with the NDIS ideology of choice and control, and adherence to the social model of disability.

As Shyman (2016) notes, ABA is inherently tied to the medical model of disability; it strips the Autistic individual of all choice and control since parent and therapist are placed in the position of absolute power to define the deviant (often organically Autistic) behaviour and eliminate it.

As Autistic adult and ABA recipient, Tim Chan, notes, the basis of ABA and other EIBIs is the medical model in which Autism is viewed as a disorder and a diseased condition, with the onus on Autistic individuals to conform and adhere to social norms, expectations and conventions. This “ableist” perspective does not respect or embrace neurodivergent functioning, and “normalism” is used mainly as a disciplining, repressive force (Waldschmidt, 2005).

That is, non-autistic behavioural therapists decide arbitrarily which behaviours are, and are not, functional or problematic, and seek to apply homogenous neuro-normative values to Autistic behaviours, without an adequate understanding of Autism or Autistic neurology.

4. Undertrained Practitioners In this context, then, we also note that ABA practitioners (including Board Certified Behaviour Analysts) need not have specific training in Autism itself, with professional development concentrating on behaviour analysis, education or psychology. That is, ABA practitioners are not specialists in Autism, nor do they necessarily have qualifications or even basic training in Autism.

Moreover, EIBIs are highly reliant on sourcing junior therapists to provide the intervention for the majority of the 30-40 hour per week program. Such junior therapists are usually only given a few days of training before they begin working directly with Autistic children; they need no other formal or informal qualifications.

5. Potential to Do Harm Most importantly, ABA and EIBIs are not evidenced to improve wellbeing, or to decrease mental illness or distress, or to increase self-determination, resilience, long-term independence or communication, or to boost family quality of life outcomes.

In fact, there is emerging evidence to suggest that ABA and other “normalising” EIBIs decrease wellbeing and increase mental illness, including severe psychiatric distress like posttraumatic stress symptoms (PTSS; Kupferstein, 2018; 2019).

Whilst further longitudinal study is indicated, Kupferstein’s initial research suggests that exposure to ABA significantly increases posttraumatic stress disorder (PTSD) in Autistic individuals, with nearly 1 in 2 Autistic individuals exposed to ABA presenting with PTSD, and with extreme levels of trauma severity in half of these affected individuals. Autistic adults have a 41%, and Autistic children a shocking 130%, increased chance of meeting PTSD criteria after exposure to ABA. Autistic adults and children not exposed to ABA have a 72% chance of reporting no PTSS.

Reframing Autism notes, then, that there is currently no evidence to prove that ABA and EIBIs are psychologically safe for Autistic individuals or their families. Indeed, the National Autism Center’s report (2015) expressly states that it is not concerned with identifying or documenting “any adverse intervention effects” (p. 31). There does exist evidence, however, to indicate the very real and significant potential for “adverse effects”.

We acknowledge that a significant and large body of anecdotal evidence exists to speak to the potential harm that EIBIs pose to Autistic individuals.

We hold that it is inherently ableist to ignore this immense body of anecdotal evidence because it is not peer-reviewed research (Ask an Autistic, 2019; ABA Controversy Autism Discussion, 2017; Davison, 2018). As a society, we have an absolute duty to listen to Autistic voices, who are the only real experts in what they have experienced when exposed to EIBIs.

6. Fidelity We also wish to question whether the principles encoded in peer-reviewed research are echoed in the reality of service provision. Given that Hassiotis et al. (2018) cite “intervention fidelity” (or, more rightly, a lack of intervention fidelity across clinicians) as a major concern, it is apposite to question how closely interventions mirror researched practice. Indeed, parent and Autistic testimony indicates a significant disparity between research and practice (Kupferstein, 2019).

Conclusion

The Australian Autistic population is experiencing a mental health crisis, with mortality rates 2.06 times that of the general population, and with suicide a leading cause of premature death.

Research shows that concealment (as promoted by EIBIs), and stigmatisation (as is communicated by the promotion of neuro-normative performance over Autistic neurology within EIBI frameworks), are key to the dire mental health statistics of the Autistic population (Hwang et al., 2019).

Reframing Autism understands that parents of Autistic children are operating from a motivation of wanting the very best for their child. Families are a vulnerable population, susceptible to being oversold EIBIs as “cures” without due understanding of the significant risks associated with these interventions. As a society, we need to ensure safe, effective, viable and respectful information and provision of alternative service models to EIBIs, to counter the pervasive stigmatisation of Autism and to change the narrative for the benefit of the Autistic community and our families and allies.

e) Employment (article f.iii) Recommendation: That the government funds Autistic-led training and employment opportunities which respect the diverse gifts of the Autistic community, and are not informed by stereotypical generalisations about Autistic strengths.

The ABS (2015) reports that only 40.8% of those identifying as Autistic are employed, compared with 53.4% of people with disability of working age, and 83.2% of people without disability. Autistic people have an unemployment rate of 31.6%. This figure is more than three times the rate for people with other disabilities (10.0%), and almost six times the rate of people without a disability (5.3%). Many Autistic adults have never had paid employment, many have only part-time or casual employment, and many more are employed in jobs that do not match their qualifications or skills.

Astudy commissioned by AMAZE (Victoria), and undertaken by the Centre for Health and Social Research and the Australian Catholic University (2019), confirm these statistics. This study found that only one in three Autistic adults were currently in paid employment, although many more Autistic adults wanted to be employed in paid positions. Moreover, more than half of unemployed Autistic Australian have never held paid employment, even though they wished to and had the requisite skills and qualifications to do so.

Autism-specific employment agencies (rather than generic disability services) exist to support Autistic workers to find employment (e.g., auticon, Specialisterne Australia, Aspect Capable, Xceptional, DXC Dandelion Program). These organisations, however, are not run by Autistics, and they are often are seeking limited (and often stereotypical) Autism skills (e.g., IT, programming, data input and analytics). Rarely do disability or Autism-specific employment services value the skills and experiential knowledge of the Autistic community.

The impact of unemployment and underemployment for the Autistic population is difficult to overestimate. Almost one in two (around 45%) of Autistic people live near or in poverty because of their unemployment. This figure is more than 2.5% higher than for the general population.

Financial stress is a significant contributor to the overall mental health of Autistic Australians and necessarily limits the ways in which Autistic individuals can access their communities.

Indeed, Autistic Australians often cannot afford the psychological and psychiatric support they need to provide them with the confidence and scaffolding to participate in the community. Many Autistic adults then have decreased feelings of self-efficacy and self-worth because of their under- or unemployment, which exacerbates their mental health complications, which in turn limits their opportunities and expectations to participate in the community.

Employing Autistic individuals in a way that values their experiences as Autistic and provides appropriate training in important skills, is a profound way in which Autistic adults can achieve self-determination, autonomy, and independence.

Dr Melanie Heyworth

CEO & Founder

Reframing Autism Ltd

W: www.reframingautism.com.au

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