Submission 87 — Speech Pathology Australia — Select Committee on Autism

Level 1 / 114 William St

Melbourne Victoria 3000 www.speechpathologyaustralia.org.au @- Sp e e ch

Pathology

G& Australia

Speech Pathology Australia’s Submission to

the Senate Select Committee on Autism

17 July 2020

The Speech Pathology Association of Australia Limited

ABN 17 008 393 440

Committee Secretary

Senate Select Committee on Autism

Department of the Senate

PO Box 6100

Parliament House

Canberra ACT 2600

Autism.sen@aph.gov.au

Dear Committee secretariat,

Speech Pathology Australia welcomes the opportunity to provide comment to the Senate Select Committee on Autism’s inquiry into services, support and life outcomes for Autistic people in Australia and the associated need for a National Autism Strategy. Speech Pathology Australia is the national peak body for speech pathologists in Australia, representing over 10,000 members. Speech pathologists are university-trained allied health professionals with expertise in the diagnosis, assessment, and treatment of speech, language and communication disabilities, and swallowing disorders.

Autism is a neurodevelopmental condition, which most often emerges in the first three years of life and is characterised by impairments in social communication combined with restricted, repetitive, and/or sensory behaviours. While there is currently no cure for Autism, there are effective evidence-based interventions aimed at addressing the core difficulties of Autism, leading to increased communication, participation and independence.

Speech pathologists are an essential part of the multidisciplinary diagnostic, intervention and support team for Autistic individuals. This is the case whether the person uses verbal language or is non speaking. The level and frequency of involvement of the speech pathologist will vary depending upon whether or not the individual has a co-occurring condition such as Childhood Apraxia of Speech, Attention Deficit Hyperactivity Disorder and/or developmental delay, intellectual disability or a mental health condition.

For many Autistic individuals, speech pathology is essential to be able to achieve educational outcomes, enter the workforce, form social relationships and participate in society. Involvement with a speech pathologist can occur as part of an intervention program during early childhood, be delivered at school, in a small group setting to facilitate communication and social skills or provided through private speech therapy sessions. At present, the level of support individuals with Autism are able to access from a speech pathologist is often inconsistent and/or inadequate. For many it depends on where they live and/or whether they are able to afford private speech therapy. Furthermore, there is also inadequate understanding generally of why a person who is able to speak may still need speech therapy.

We hope the Committee finds our feedback and recommendations useful. If we can be of any further assistance or if you require additional information please contact Ms Amy Fitzpatrick, Senior Advisor

Disability at the Speech Pathology Australia National Office

Yours faithfully

Tim Kittel

National President

Table of Contents

• About Speech Pathology Australia

• About communication and swallowing disability

• About Autism

• About Complex Communication Needs

• The roles and responsibilities of speech pathologists working with individuals with Autism

• Speech Pathology Australia’s feedback regarding relevant terms of reference:

• a. current approaches and barriers to consistent, timely and best practice Autism diagnosis

• b. the prevalence of Autism in Australia c. misdiagnosis and under representation of females in Autism data, and gender bias in Autism

• assessment and support services

e. the demand for and adequacy of Commonwealth, state and local government services to meet the

• needs of Autistic people at all life stages

f. the interaction between services provided by the Commonwealth, state and local governments,

• including:

• i. health and mental health

• ii. education

• iii. employment

• iv. justice

g. the social and economic cost of failing to provide adequate and appropriate services, including to

• support key life stage transitions of Autistic people

h. the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for Autistic people,

• including:

• i. Autism understanding within the NDIS

• ii. the utility of the Early Childhood Early Intervention Pathway for Autistic children

• iii. the ability of the NDIS to support Autistic people with complex needs, including those transitioning from prison settings

• iv. the adequacy and appropriateness of supports to empower Autistic people to participate in the NDIS planning process, and exercise self-determination through choice and control over their support services

i. the development of a National Autism Strategy and its interaction with the next phase of the

• National Disability Strategy

• j. the adequacy of funding for research into Autism

• k. the social inclusion and participation of Autistic people within the economy and community l. the capacity and sustainability of advocacy, self-advocacy and self-determination supports for

• Autistic people, including mechanisms to self-represent to government as enshrined in the United Nations Convention on the Rights of Persons with Disabilities

• m. any other related matters.

• Recommendations

• References cited in this submission

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Speech Pathology Australia’s submission to the Senate Select

Committee on Autism

Speech Pathology Australia (the Association) welcomes the opportunity to provide comment to the Senate Select Committee on Autism’s inquiry into services, support and life outcomes for Autistic people in Australia and the associated need for a National Autism Strategy. We have structured our feedback in response to relevant terms of reference and include, where appropriate, examples provided by our members working with people with Autism. We also include feedback from a recent member survey addressing the terms of reference, answered by 100 Speech Pathology Australia members across Australia, as well as comments prepared by a dedicated working party, representing highly experienced speech pathologists working across different sectors and states/territories.

Speech Pathology Australia was in the privileged position of having an Autistic speech pathologist contribute to this submission and provide feedback on behalf of the Autistic community, particularly around the Autism specific terminology used and presumed needs of Autistic people. As such, it is important to note that this submission will be using the preferred language of the Autistic community such as “Autistic person” or “person with Autism”, rather than commonly used terms in the literature such as “Autism Spectrum Disorder”. Similarly, generic labels such as “high” or “low” functioning or “severe” will not be used. Instead, descriptive terms such as “Autistic person with intellectual disability” and “Autistic person with communication support needs” will be used. As key health professionals advocating for communication and inclusion, this was deemed important as a way forward to develop a completely inclusive society, whilst still acknowledging the diverse support needs of the Autistic community.

We  preface  our remarks and recommendations  with background  information on communication

disabilities, complex communication needs, swallowing disorders and the role of speech pathologists.

About Speech Pathology Australia

Speech Pathology Australia is the national peak body for speech pathologists in Australia, representing over 10,000 members. Speech pathology is a self-regulated health profession through Certified Practising Speech Pathologist (CPSP) membership of Speech Pathology Australia. Speech pathologists work in a variety of sectors, across early childhood, education, justice, health, mental health, aged care, and disability services, in both public and private practice.

The CPSP credential is recognised as a requirement for approved provider status under a range of

funding  programs  including  Medicare, some Commonwealth  aged  care  funding  such  as  the

Commonwealth Home Support Programme (CHSP), Department of Veteran Affairs (DVA) funding, the National Disability Insurance Scheme (NDIS) and all private health insurance providers.

As the national body regulating the quality and safety of speech pathology practice in Australia, Speech Pathology Australia manages the formal complaints process for the profession and can, if necessary, place sanctions on practice for any member who is demonstrated to contravene the Association’s Code of Ethics.

About communication and swallowing disability

Some people have problems with their speech, language, communication and swallowing that are permanent and impact on their functioning in everyday life.

Difficulties  in speech, language, fluency, voice, social communication and swallowing can occur  in

isolation or the person may have difficulties in more than one area. Communication and swallowing difficulties can arise from a range of conditions that may be present from birth (e.g. Down Syndrome), emerge during early childhood (e.g., stuttering, severe speech sound disorder), or during adult years

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(e.g., traumatic brain injury, stroke and head/neck cancers, neurodegenerative disorders such as motor neurone disease) or be present in the elderly (e.g., dementia, Alzheimer’s disease, Parkinson’s disease).

Communication  disorders  encompass   difficulties  with  speech  (producing  spoken  language),

understanding or using language (including oral language, reading, spelling and written expression), voice, fluency (stuttering), and pragmatics (the social use of language), or a combination of areas. There is very strong international and Australian evidence that communication disorders negatively affect an individual’s academic participation and achievement, employment opportunities, mental health, social participation, ability to develop relationships, and overall quality of life.

Swallowing disorders  affect the  ability to safely swallow food or  liquids and can lead to medical

complications and a reduced  ability to safely and enjoyably participate  in social, employment and

education experience where consumption of food and liquid is needed. Swallowing problems are common in people with complex disability.

About Autism

Autism refers to a group of pervasive neurodevelopmental conditions with onset  in early  life and

characterised by impairments in social communication skills and restricted, repetitive behaviours and/or sensory impairments.i Eating and drinking disorders are also commonly observed in individuals with

Autism.ii

Autism is a life-long condition and individuals with Autism require support across their life span.

Autism is a heritable condition in many cases, but with substantial genetic heterogeneity resulting in

varied presentations and diverse  needs.iii There are some  similar patterns  of behaviour  (e.g.,  all

individuals with Autism will have impairments in using or understanding non-verbal communication) but each individual with Autism will have unique skills and varied difficulties. For example, an individual’s

communication  skills and  difficulties may vary across a range  of contexts and with a  variety  of

communication partners.  It  will often be easier to communicate with a family member than with an

unfamiliar person. The individual’s needs will also vary and fluctuate across their life span. For example, some Autistic individuals may experience increased challenges to their ability to be involved in activities and to participate at times of transition or marked change (e.g. from primary to secondary school, from being single to being in a relationship, or when becoming a parent). This can be very difficult for those unfamiliar with the impact of the situation and context on the person with Autism to understand, particularly when the person does not have an intellectual disability and appears to cope well in most situations.

A diagnosis of Autism may be expressed very differently in different individuals, with some showing what might come across as minor difficulties, while others experience more significant needs in more than one area, for example, learning, social skills, communication and fine motor skills. Some individuals with Autism have no or limited speech and require a system of augmentative and alternative communication

(AAC)  to communicate. Other  Autistic people  will have average speech and language  skills but

experience  difficulties  with understanding language  in a  social  context, such as having  difficulty

understanding sarcasm, not reading body language such as standing too close to someone or identifying when someone isn’t interested in the same topic as them.

There are a range of interventions currently available to individuals with Autism and their families, however there is currently no single effective intervention for all individuals with Autism.iv Interventions address the core symptoms of Autism (e.g., improving understanding of language, use and understanding of non-verbal communication) and aim to help improve an individual’s quality of life and increase social acceptance and participation. Substantial benefits can be obtained for Autistic people and their families across the lifespan by the implementation of appropriate, empirically supported interventionsv, with appropriate frequency and longevity.

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Many individuals with Autism experience associated medical (e.g., epilepsy), learning (e.g., intellectual disability) and mental health (e.g., anxiety, depression, Obsessive Compulsive Disorder) difficulties.vi Between 40 - 83 per cent of Autistic children also have attention deficit hyperactivity disorder (ADHD). Approximately 80 per cent of Autistic children will have an intellectual disability and many of these individuals will also experience high levels of emotional and behaviour disturbance.vii Individuals with Autism also present with more psychiatric symptoms and diagnoses than the general population.viii In early childhood the most commonly experienced mental health concern is anxiety.ix x

About Complex Communication Needs

Over half of the Autistic people  in Australia have “profound or severe communication  restriction”.xi

Instead of ‘profound or severe communication restriction, the Association uses the term Complex Communication Needs (CCN) to describe difficulties with understanding or the expression of language and communicating using speech alone, which occur as a result of, or in association with, other sensory, cognitive or physical impairments. Individuals with CCN may have little, no speech or unintelligible speech. Many people with CCN benefit from the provision of additional or alternative methods of communication such as aids and devices. For people with CCN, the need for specialist assessments and intervention by speech pathologists is crucial, and an individualised approach is essential to make sure the right communication system meets the needs of the person across the lifespan.

Augmentative and alternative communication (AAC) refers to methods of communication that either support speech, where speech is difficult to understand, or as an alternative to speech, when speech is very limited, or the person has no speech. AAC can include ‘unaided’ methods of communication such as signing and gestures, body language and facial expressions; it can also include ‘aided’ communication, using pictures, symbols, text and spelling with paper-based or electronic resources. Communication software on an iPad, or a dedicated speech generating device can provide a voice for Autistic people. AAC needs to be sufficient to enable a person to use language – however, it is in a different form to what most people use day to day.

Some people with CCN rely on informal communication such as body language, facial expression and gestures to communicate their needs and wants. They may have associated challenging behaviours, such as yelling or hitting, resulting from feeling frustrated that their communication signals are not being identified, acknowledged or responded to.

It has been estimated that 17 – 25 per cent of Autistic people do not develop functional speech.xii Given this, the importance of having an effective method of communication is paramount to that person’s participation and enjoyment in life, as well as a basic human right. The successful use of AAC systems and strategies contributes to personal well-being and quality of life for people with CCN.xiii

The roles and responsibilities of speech pathologists working with individuals with Autism

Speech pathologists work to give people with Autism a voice and connect with others in an accessible and meaningful way, assist in teaching the social communication skills required to participate in different environments, and reduce the impact of swallowing or feeding difficulties experienced by individuals with Autism and their families across the lifespan and all life activities.

The pervasive nature of certain difficulties, varied and fluctuating presentation and high incidence of co existing conditions requires a thorough diagnostic process that examines all aspects of development and

functioning.  It  is the Association’s position that the diagnosis process must involve a collaborative

multidisciplinary team.

The professional assessment team most often consists of a medical practitioner such as a paediatrician, or psychiatrist, a speech pathologist and a psychologist. Other professionals involved may include an occupational therapist, physiotherapist, maternal and child health nurse, educator or employment support

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personnel. The most important part of the assessment team is the Autistic person and their support networks, as they are required to give information in an interview style about how they, their child, or the person they support may have demonstrated traits of Autism over time, and in different environments, and often, whether they or the person identify as Autistic. The speech pathologist can provide support to this process by using different strategies and resources to facilitate understanding of the questions for people with different abilities and learning styles.

Speech pathologists are essential members of the diagnostic team as they are the only profession with the knowledge and skills required to comprehensively assess the core communication, speech, language, social pragmatic and eating and drinking difficulties associated with Autism. The speech pathology assessment process involves multiple assessment sessions as the speech pathologist observes and assesses the individual in a range of contexts (for example, clinic, home and/or educational setting) and with a range of communication partners (e.g. family, peers or strangers). This will often include a standardised assessment and a comprehensive report addressing all areas of communication and eating/drinking.

An important role of a speech pathologist  in the diagnostic process  for Autistic individuals  is the

differential diagnosis of Autism and other communication related conditions; including specific language impairment, social (pragmatic) communication disorder, language disorder, speech sound disorder (e.g., childhood apraxia of speech), and specific learning disorder (e.g., dyslexia). In addition, the speech pathologist will assist the multidisciplinary team to decide if the person’s communication profile is more consistent with a description of intellectual disability, trauma, anxiety, or attention deficit disorder, or Autism in conjunction with one or more of these other conditions.

Speech pathologists play an important and fundamental role in supporting individuals with Autism and their families as they are often the first professional consulted when parents are concerned about their child’s development and the most frequently utilised service among young children with a diagnosis of Autism.xiv A 2011 Australian survey of interventions used by families of preschool children with Autism, showed that the most frequently accessed service was speech pathology, with 43 per cent reporting that they had previously used speech pathology and 62 per cent reporting that they currently used speech pathology.xv

Speech pathologists are also trained to plan and evaluate interventions for individuals with Autism, their families, educators, employers and the community. Examples of interventions include; teaching key word sign language or how to use a communication device to an Autistic person and their support networks so the person can be understood and participate in different environments, and helping Autistic people attend, listen to, and understand verbal speech, as well as supplementing this with visual material as needed. Speech pathologists write goals in conjunction with Autistic people and their support networks and review them at regular interviews to ensure outcomes are clear and progress is being made.

Working with Autistic individuals is in scope for all graduated speech pathologists. In order to work effectively in this area of practice, speech pathologists require professional development and supervision. The Association offers formal mentoring support to early years speech pathologists and runs a number of communities of practice designed to increase skills and knowledge in the area of CCN, Autism and eating and drinking difficulties. Speech Pathology Australia has published a clinical guideline - Evidence Based Speech Pathology Practice for Individuals with Autism Spectrum Disorderxvi - for working with Autistic people that is reviewed by academics working in the field and an expert working group at regular intervals and is committed to providing ongoing professional support and education to its members to ensure Autistic people receive the best possible services that are person centred and evidence based. The guideline states that speech pathologists working with individuals with Autism must engage in continuing professional development and maintain appropriate professional supervision and support.

Speech Pathology Australia advises members that individuals working for organisations will require workplace or external training whilst others working as sole practitioners will require strong links with other disciplines, as well as access to external supervision as needed. Just as in other areas of practice, speech pathologists managing complex cases such as a dual diagnosis of trauma and Autism, will require

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additional training and experience. Speech pathologists with additional knowledge and skills may consult, mentor, and provide supervision to fellow speech pathologists providing service to individuals with Autism and their families or carers. The Certified Practising Speech Pathologist certification program requires the member to list annually the relevant education that they have completed to ensure current knowledge about the profession and best practice, and members are required to achieve a number of training hours to retain their credentials.

Speech Pathology Australia’s feedback regarding relevant terms of reference:

a. current approaches and barriers to consistent, timely and best practice Autism diagnosis

A timely diagnosis and access to appropriate interventions as early as possible is crucial in supporting people with Autism to achieve positive outcomes. Best practice guidelines recommend a waiting period of no greater than three months.xvii Unfortunately, this target is not often met in Australia, where the median wait time for an assessment in the public health sector is 16 weeks, with a range of 2 - 108 weeks. In rural, remote, and regional Australia, the wait-time is twice as long as in metropolitan areasxviii and for adults there are no public assessment centres at all, indeed 78 per cent of Speech Pathology Australia members surveyed reported that in their location, assessments were not conducted within 4 months.

One member reports:

“There were children on the waitlist in the western suburbs of Melbourne who were waiting over three years for an Autism assessment, just because they happened to be over 7. In the meantime, some of these children were getting expelled from school as they were considered to have behavioural issues.”

These wait times mean that significant socioeconomic disadvantage emerges, as families that can afford to, will often seek private assessments, and therefore can access funding services such as the NDIS much more quickly. There are also families who borrow money or put themselves into debt because they are desperate for answers and direction about how to best support their child. Although there are some limited Medicare items to support Autism diagnosis, these need to be activated and used by the time a child is 13xix and the total possible rebate is $340. It is worth noting that these Medicare items need to be activated by a paediatrician or psychiatrist, and this appointment is often at an additional cost. Given that private assessments cost up to $2750xx this is unachievable for many families.

A member story highlights one family’s experience:

“I worked with a single mother who was so desperate to get her son assessed after waiting a year, that she took out an advance on her Centrelink payment and will spend months paying this back, just because she needed others to understand that her son wasn’t naughty or violent, he had significant sensory difficulties and anxiety that made being in different environments and eating anything other than chicken nuggets extremely scary for him”.

Another example was given whereby:

“One young boy attempted suicide at school because he felt so stupid and misunderstood. He could not get a diagnosis for over three years as his family could not afford to pay privately, and the government funding dictated children under 6 needed assessments first. When the young boy finally attended his assessment and had the diagnosis explained to him, he made the comment “oh, so I’m not just stupid?”

The average age of diagnosis in Australia is 49 months, despite Australian research showing that Autism can be reliably diagnosed from 2 years of agexxi and that early intervention is essential in making long term progress.xxii Similarly, the NDIS requires children to be diagnosed by the age of seven in order to access funding or continue to receive funding if moving from the Early Childhood Education Intervention (ECEI) pathway, adding extra stress for families who have already been waiting for lengthy periods for a diagnosis. If their child then receives a diagnosis of level 1 Autism, acceptance into the NDIS is unlikely

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without highly skilled advocacy, so the process for receiving funding becomes far more complicated and confusing, adding another layer of stress for families who have now been waiting many years for answers and support.

Maternal Child Health Nurses (MCHNs) are often the first health professionals to notice a developmental delay in a child. Australian studies have shown that training MCHNs in using standardised screening tools for the early identification of Autism is highly successful in early referral and identification of Autism,

however this  is yet to be implemented  nationally.xxiii Speech pathologists are often the  first health

professional referred to when the MCHN has developmental concerns, but due to lack of funding in the public health system, there is usually a delay of many months to receive an initial assessment. This in turn is then exacerbated by another long wait to see a paediatrician or psychologist to initiate an Autism assessment when the speech pathologist identifies concerns. Knowing that there is an effective way of identifying children early makes any failure of the system even more frustrating and distressing for speech pathologists already feeling pressured to provide an effective and ethical service to families who have had concerns about their child for a long time.

Speech Pathology Australia has recently become aware of instances where families are encouraged by health professionals and some employees of the NDIA or companies contracted by the NDIA, to seek a diagnosis of Autism in order to receive funding and support services. This is extremely concerning for the person who may receive an inappropriate diagnosis, and it also undermines the journey many Autistic people face to gain identity and a place in the world, as well as damaging the reputation of health professionals committed to using best practice to diagnose Autism. Similarly, health professionals are sometimes asked by families or other parties to change severity levels in order to access funding. If these anecdotal reports are correct, it undermines the ethical integrity of health professionals, who are bound by codes of conduct by regulatory or peak bodies. Such actions not only represent significant barriers to consistent and best practice diagnosis, they also highlight the desperation some families feel in trying to help their child.

b. the prevalence of Autism in Australia The current prevalence of Autism in Australia is estimated at between 1.5 and 2.5 per centxxiv and in more recent parental reporting studies, this figure increases to between 2.9 and 4.5 per cent.xxv It is important to note that given the delays in diagnosis, and common misdiagnoses, this number could be far higher, and if assessment processes improve, so will true estimates of the prevalence and funding support needs for people with Autism.

The Australian Bureau of Statistics, Survey of Disability, Ageing and Carers (SDAC) states that in 2018 ‘there were 205,200 Australians with Autism, a 25.1 per cent increase from the 164,000 with the condition in 2015.’xxvi

c. misdiagnosis and under representation of females in Autism data, and gender bias in Autism assessment and support services

According to the Australian Bureau of Statistics, in 2018 ‘males were 3.5 times more likely than females to have the condition, with prevalence rates of 1.3 per cent and 0.4 per cent respectively.’xxvii

However, given the tendency for girls to be mis-diagnosed or under-diagnosed, these figures may not be accurate. Sixty-nine per cent of respondents to our member survey indicated that they believed there was common misdiagnosis or underdiagnosis of girls and women in their state, with common themes such as:

• Many young women (late teens - early twenties) are only just receiving their diagnosis • Often mothers will start the diagnostic process on themselves after their daughter receives a

diagnosis due to lack of public information around the different presentation of Autistic girls

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• Girls being identified as having eating disorders, selective mutism and/or anxiety when they in fact have Autism.

• Many second opinions come through due to lack of understanding of how Autism presents in females • Younger girls have had difficulty obtaining a diagnosis even though it was clinically warranted, as

they are less likely to be considered for assessment before the age of 10

• Females are often not seen to have Autism due to them having a desire to seek friendships despite being unable to successfully initiate/maintain conversations

• Males whose cluster of symptoms is more typical with a female presentation of Autism are often misdiagnosed or not diagnosed as Autistic as do not fit the ‘standard pattern’ of Autism

One member writes:

“That was exactly my experience as a child without a diagnosis – someone who got the “too” or “just” labels e.g. “too awkward, too sensitive, too emotional, too difficult, just fussy, just a worrier…” knowing that you’re not “too much” and that it’s your ND (neurodiversity) is much more protective. Giving kids the

chance  to  develop  a  positive  self-identify  early  on  would make  a  difference  to many   life

trajectories. Having a diagnosis would have made school and Uni much easier for me.”

Increasing awareness and acceptance for Autistic girls and women, and indeed those who identify as a non-specified gender, and early diagnosis for all Autistic people, will continue to help people feel like a valued part of the workplace and society in general.

e.  the demand  for and adequacy  of Commonwealth, state and  local government

services to meet the needs of Autistic people at all life stages

Ninety-six per cent of respondents to the Speech Pathology Australia member survey reported that there were not adequate services to meet demand at a Commonwealth, state or territory government level to meet the needs of Autistic people at all life stages.

Some common themes reported in the survey included:

• Research and funding focus on early intervention, but given the majority of people are diagnosed later than this, most people miss out on funding and the number of skilled therapists trained in working with adolescents and adults is very small

• Autistic adults with significant care needs are often unable to find supportive accommodation, and their elderly parents don’t know where their child will live when they pass away

• There seems to be an understanding that the NDIS is responsible/should provide for supports, and therefore community organisations offer less support within, or deny access to their own programs.

The 2018 SDAC highlighted that of the 170,100 Autistic people who required assistance, many did not receive some or all of the assistance they needed, with 30,100 people having an unmet need for

communication and 61,000 an unmet need for cognitive and emotional support.xxviii  Often  if a person

does not have an effective method of communication, interventions for emotional support are difficult to deliver, making the need for communication of two-fold importance.

When a child is suspected of having Autism, they are often deemed ineligible to receive services from a state-funded centre, such as a community health or child development centre. They then wait for an Autism assessment for an unspecified amount of time, to be able to enter the early childhood early intervention pathway. During this time they are not receiving intervention to see if this may improve their function, and if they have not had an Autism assessment by the age of 7, or if they receive a diagnosis of level 1 Autism, they may not receive any state-funded therapy, as 1:1 therapy sessions are rarely funded in education or health settings. This increases the urgency speech pathologists feel to refer as early as possible for both early intervention services and Autism assessments, and for public assessment centres to triage referrals to meet age restrictions.

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With regard to Autistic people in schools, the 2018 SDAC results again demonstrate the need for increased speech pathology services with 77.7 per cent of the Autistic survey respondents experiencing difficulty in their place of learning, 59 per cent reporting social difficulties, 55.3 per cent reporting learning difficulties and 51.5 per cent communication difficulties.xxix Given that speech pathologists are the main health professionals targeting communication, social language communication and communication based learning skills such as reading and writing, and their experience in complementing the developmental and teaching expertise of educators, the lack of funding and investment in Autistic children during these foundational years is concerning.

There is also an increasing need for speech therapy for people with Autism and gender dysmorphia. Research shows that Autistic individuals are more diverse in their gender identities than the general population, and experience more traits of Gender Dysphoria, particularly Autistic females.xxx As people continue on their gender identity journey, speech therapy to give the Autistic person the voice they want that matches their gender identity is an essential part of future social and economic participation. This is an area of specialty that currently does not have enough speech pathologists to cover demand.

First Nations people have a lower prevalence of Autism diagnosis, but this is likely due to the lack of

access  to  assessment  and  the  cultural  difference  of  accepting  individuals  with  Autism.xxxi

Recommendations from First Nations people and communities about helping to educate the community about Autism, as well as involving the wider community in the assessment and treatment of Autistic people need to be acted upon. Speech pathologists are committed to engaging with families in a culturally respectful and inclusive way and providing education at a community level. With additional resources and funding, speech pathologists can provide more timely and effective services to First Nations people.

f. the interaction between services provided by the Commonwealth, state and local governments, including:

i. health and mental health The healthcare system is not currently offering consistent access to high quality, coordinated,

collaborative healthcare to people with Autism. One of the impacts of the NDIS has been the loss of the means and opportunities for information sharing between the disability sector and mainstream health services. Where there may be an understanding of the need, and a willingness to gather comprehensive information about health history and co-morbidities of people with cognitive disability, the changes to the service delivery system have made it more difficult to access and share this type of information.

The Committee may be aware that healthcare services have often reacted to people with Autism and behaviours of concern by placing them into forensic facilities and/or implementing restrictive practices. There is a lack of systems/structures within health services to ensure coordinated and comprehensive care for Autistic people, whose presentations may be complex and where various factors interact in ways that impact upon treatment. Providing better supports for communicative participation – to help prepare the person for their health service experience, to enable the healthcare staff to understand the person’s needs around communication, and to support the person to feel that their messages are being identified, acknowledged and responded to – are an important component of addressing these issues.

Health systems may be unprepared, or unwilling, to offer the adjustments needed by people with Autism to access high quality care. This includes a lack of flexibility/funding to provide services in a way that is accessible. For example, last minute rescheduling, or no preparatory information being provided prior to procedures (i.e. surgery) leads to many Autistic people becoming unnecessarily stressed, with a range of negative impacts on their access to healthcare as a result of the behaviour they may exhibit when stressed.

Our members have provided the following real-life examples:

“A young man who cannot tolerate wearing clothing. His care staff asked the doctor’s office to avoid a waiting room environment due to this, so time with clothing was minimised. This was not accommodated, 11

which led to the young man undressing himself in the waiting room. He was then asked to leave and was unable to attend his Neurology appointment.”

“A man’s family requested appointment be conducted in the van outside as he becomes agitated in new environments and with new people (including demonstrating behaviours of concern that would have put members of the public at risk). This was refused and consequently, he has still not been able to see a neurologist. “

“A young woman with Autism was to be admitted for minor surgery. Her community speech pathologist and occupational therapist attempted to contact the hospital for information about the procedure, and photos of the environment in which the procedure would occur in order to help address anxieties and sensory sensitivities and help to prepare her. The health system did not respond, and it wasn’t possible to help the young woman prepare for the procedure. This led to a very stressful day for both the young woman and her mother, as it increased her behaviours of concern.”

There are many anecdotes of serious medical conditions being dismissed as behaviour issues without possible medical causes being investigated. Because people with Autism and CCN may express pain in different ways clinicians have difficulty ascertaining if a person’s behaviours are a demonstration of new

or worsening symptoms of  illness, and therefore are less  likely to provide the same standard of

care/therapy as they would to someone without Autism.

With regards to the mental health sector, there appears to be a reluctance from health professionals to engage with Autistic people, even if their most disabling condition is their mental health concern.

One member writes:

“I feel like most of my time was trying to figure out who was going to help this young person get a diagnosis and some help instead of speech therapy. If they needed mental health support and had suspected autism, this was considered out of scope for state mental health practitioners, and the child urgently needed mental health support to deal with his anxiety while waiting for an autism assessment. This was not a good example of team work, even though we were working in the same building”.

There is also a lack of precision in diagnosis when someone may have Autism and a mental health condition, with a tendency for professionals to choose one or the other, due to the complex nature of the presentation for these people, who take a significant time to assess and diagnose, and are often difficult to communicate and interact with.

A member reports:

“ Some health professionals find it difficult to differentiate between trauma and autism, and are more likely

to diagnose autism than conduct a  multidisciplinary assessment  with a number  of standardised

assessment tools to ensure the correct diagnose is made, and often state autism gets funding, and trauma doesn’t”.

ii. education

The following scenario is indicative of the lack of consistency between different sectors, and the amount of confusion and discouragement this causes for Autistic people, their families, and professionals within these systems. One member writes:

“When our (public) assessment service transitioned to using the National Assessment Guidelines, we no longer included a speech pathology and psychologist report in every assessment, as in some cases a paediatrician was the sole diagnostic clinician. About a week prior to school commencing, at least 20 school principals rang us panicking as their requirements for inclusion support required all three health professionals to sign off on an autism diagnosis, and their funding did not allow for therapists to complete autism assessments. Our service was put in the situation of assessing children already given a diagnosis ahead of children waiting on the waiting list so they could get an aide at school, or saying no and expecting the family to pay for a private assessment. “

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Similarly, each state has a different system, making access inequitable across the country and confusing to understand for those making policy.

iii. employment

There is currently a huge gap in services to support Autistic people entering the workforce. Autistic

people  report  that  the  barriers they face  in  gaining  or  retaining employment  include a  lack  of

understanding of Autism from potential employers, being unable to attend interviews due to their Autism or anxiety, poor health, and lack of support available to find a job.xxxii

Difficulty changing jobs or getting a preferred job was the most common restriction, reported by 50 per cent of people with Autism and disability of working age (15–64 years old). About 3 in 10 (29 per cent) people with Autism were permanently unable to work due to their condition or disability. Around 3 in 4 service users aged 16 and over with autism (74 per cent) received the disability support pension as their main source of income, and a further 13 per cent received another pension or benefit. Only 6 per cent reported paid employment as their main source of income.xxxiii

Current government disability employment programs and support services need to be adapted in order to meet the social and communication needs of Autistic people.xxxiv Speech pathologists advocate for and provide consultation for communication access in workplaces, train people in communicating effectively with people with CCN and provide therapy to Autistic people regarding the social communication and conduct needed in workplace settings. Providing funding for speech pathologists to attend on-site and assist with these initiatives will improve inclusion and long-term outcomes for Autistic people, allowing them to gain and retain employment.

iv. justice

Several neurodevelopmental disorders with associated speech, language and communication needs,

such as attention  deficit hyperactivity disorder (ADHD), Autism and  fetal alcohol spectrum disorder

(FASD) are overrepresented in the justice system.xxxv

Similarly, members report a number of people they consider having undiagnosed Autism in prison. This has huge implications, given people with unrecognised speech, language and communication needs are likely to struggle to access treatment and rehabilitation programs delivered verballyxxxvi which has further consequences for recidivism. Given this link, and the potential for challenging behaviour, it is important for those working in the justice sector to be able to make the connection between behaviour of concern and communication in order to respond appropriately. It is essential therefore for speech pathologists to contribute their expertise regarding the assessment and management of undiagnosed communication needs such as Autism within multidisciplinary treatment approaches targeting the management of challenging behaviour.

Autistic people may experience neglect through a lack of timely and consistent access to support services such as speech pathology and intermediary services which in turn affects their ability to access and participate effectively in the justice system. Access to speech pathology services varies significantly according to an individual’s age, diagnosis and geographical location. Additionally, Autistic people may not be considered to need communication support if they are verbal, and can hold a basic conversation, but struggle more with understanding difficult concepts and following long conversations.

People with Autism are also at risk of the unnecessary use of seclusion and/or restraints - as they are more likely to display challenging behaviour or meltdowns in a stressful situation due to a lack of awareness, recognition and understanding by the justice system workforce of the link between Autism and such behaviour.

In terms of access to the justice system, for people with CCN, the major issues relate to:

• Reduced expectation of competency that people with CCN are able to give evidence on their own behalf, and that the message that they are communicating is their own.

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• Limited acceptance of alternate forms of communication as ‘legal’ or accepted modalities with which to give evidence.

• Limited awareness, skills, and knowledge by police and court personnel as to the most appropriate way to communicate with people with CCN.

• The increased risk of harm and abuse to this population of our society because perpetrators know that their evidence will not be accepted in court.

Dealing with the police

The multi-modal communication systems used by those with CCN are often complex and highly individual, meaning that specific training or familiarisation is required by communication partners before

being able  to communicate  effectively with a person or  interpret  their responses. Supporting the

communication and  participation  of people with CCN  is a  specialist and challenging area. Even

experienced practitioners in this field require familiarisation with the person and their system to be able to do this.

While basic generic  training  for police to develop  their understanding and awareness  of complex

communication is of huge benefit and is needed, it cannot prepare them, or other public servants, for the process of interacting with or interviewing individuals with CCN. Even police officers with specific training in disability could not be considered competent to elicit and understand the responses of many people with CCN. Without an understanding of how to use appropriate communication supports, the person with CCN may be presented with a series of ‘yes/no’ questions to answer. This not only compromises the elicitation of their spontaneous communication; it also makes the process of responding more problematic for them as it requires the use of more complex language structures and requires better receptive language and auditory memory ability. In order to ensure that the voice of people with CCN can truly be heard, trained communication intermediaries who are given the opportunity to familiarise themselves with the person and their communication modes prior to the police interview and provide support throughout the interview and in court, if required, is paramount.

The operation of the courts

People who use alternate forms of communication must have the same rights as the wider population in being able to give evidence within a court proceeding. The use of AAC systems therefore should be an accepted and acknowledged part of the legal system; just as accessibility requirements for physical disability are provided and accepted.

There are, however, many other aspects of the legal system and court process that are likely to be problematic and prove challenging for most people with complex communication needs. For example:

Availability of relevant vocabulary

Availability and access to vocabulary to enable  full and spontaneous communication  is always an

underlying issue with AAC. Unless a user can spell or otherwise create words to convey meaning, people who use AAC are reliant on those in their environment to provide the vocabulary they can use to express themselves. Consequently, they often would not have access to, or an understanding of the vocabulary needed to participate fully in the legal system. While it is important that the necessary vocabulary required to enable a person to express themselves efficiently and explicitly is provided, it is also critical to consider how this can be done in a way that will reduce the possibility that the veracity of their communication can be challenged. Training of the police and the development of skilled communication support people is required.

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For those individuals already in the justice/correctional system, identifying and supporting their speech,

language and communication needs can  increase  engagement/participation  in  verbally mediated

criminogenic programs and restorative justice practices, and, given the benefits of good communication in the maintenance of positive social networks and education/employment, may reduce future recidivism. There are now speech pathologists employed in several youth justice facilities, such as in Queensland and South Australia, however this is not yet consistent across all youth justice services, or within adult correctional or forensic mental health settings, across Australia.

g. the social and economic cost of failing to provide adequate and appropriate services, including to support key life stage transitions of Autistic people

Ninety-five per cent of Autistic people report having experienced challenges in education due primarily to

social, communication, and learning  difficulties.xxxvii  It  is often assumed that children with average

cognitive abilities do well academically. In fact, academic achievement varies widely in Autistic students, despite cognitive ability. One critical area of academic achievement is learning to read, and a high

percentage  of  Autistic students have reading comprehension  difficulties, which lead  to academic

difficulties.  If students cannot read adequately, high school  is a  difficult environment, and  tertiary

education opportunities are often  limited, meaning many  Autistic people who could have received

assistance early on in school miss out on varied employment opportunities later in life.

One member writes: “I work with a young lady who comes to see me to “crack the code” on workplace social skills. She says that her Autistic friends don’t really accept her because she works full time, has a Master’s degree and has a boyfriend. But she says the anxiety of having to hold it all together all the time around people that just don’t get her need for space and her particular diet, and having to constantly read people’s non verbal cues is exhausting. She just wishes she could just be Autistic and ask for what she needs in the workplace, but as a “mild” Autistic, she feels she just has to be grateful and try to fit in.”

h. the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for Autistic people, including:

i. Autism understanding within the NDIS At present NDIS planners and local area co-ordinators (LACs) are not required to have experience in disability, or relevant qualifications. This means that rather than having specific training and coming to the planning process with skills and experience within the disability field, planners and LACs only have their lived experience and understanding of disability and therapy interventions from limited sources such as mainstream media. This lack of knowledge about disability and appropriate supports amongst planners is particularly problematic as they are in the position of authority to determine the supports that the Autistic person receives and therefore the participant and/or their family are under immense pressure and stress during the planning process to convince them of their needs.

For example, one member reported:

“Planners need to actually know something about disability. I had a situation last year with a brand new planner who had just finished a Uni degree in human resources, was 21, and told the family that there was no need for OT and SP [speech pathology] because they ‘did the same thing’. This child was having meltdowns at school where his whole classroom had to be evacuated because the other children were at risk - he has extreme sensory reactions, and didn’t have the language to explain what was happening. This was right before Christmas, and this planner put them (and me) through hell, demanding more and more supporting information and documentation, because they didn’t understand Autism. The mum was so exceptionally stressed, she stopped sleeping, was in constant contact, and I was actually worried she

would need medical intervention.  I have worked with this family for 3 years under NDIS, but  still on

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Christmas Eve 2019 I had to write a third report, free of charge as they had run out of funding by that point, just explaining that yes, SPs do work with children with Autism, simply because the NDIS planner doesn’t understand Autism, or different allied health professions.”

Another member discussed the behaviour of a planner towards a family attempting to advocate for their child with Autism, who is not speaking, to have speech therapy in their plan:

“[the mother] got told by the planner to get a grip on reality… I believe he even swore at her while doing so. So many planners without the necessary skills trying to make judgements in areas that are outside their knowledge base.”

Speech Pathology Australia members, both  in  their discussions with Association  staff, as well as

throughout the recently conducted member survey, consistently raise similar issues in regard to their clients with Autism:

•   There are  significantly less supports available  for adults with Autism, compared with children,

particularly young children under seven years of age, and this appears to be due to an assumption that Autistic individuals cannot improve their skills as adults.

• Those who are better able to advocate, or are more articulate, are given greater amounts of funding and supports, directly disadvantaging families who come from culturally and linguistically diverse backgrounds, have lower literacy, or have mental health concerns or disabilities themselves.

• NDIS staff do not have adequate understanding of the different roles, skills and capabilities of the various allied health professionals in providing supports for Autistic people, frequently seeing them as interchangeable, or that one type of therapy - often speech pathology – is unnecessary if you have another. One Speech Pathology Australia member produced a fact sheet about speech pathology, feeding and Autism that she had sent to each planner she worked with to save time, as she had been

  repeatedly told that speech pathologists and occupational therapists worked interchangeably,

particularly in the area of feeding and fussy eating.

Speech pathologists report feeling that their clinical opinions and voices are ignored, their written reports may not even be read by NDIS staff, despite potentially having worked with the Autistic individual for a considerable length of time and/or having a wealth of clinical experience with Autism.

There are also significant difficulties accessing the NDIS if the Autistic individual does not fit the ‘typical’ presentation. From the reports of both speech pathologists and families there appears to be a set of strict criteria or check boxes that Autistic people are expected to fit in to, almost as if there is a checklist of what Autism encapsulates. This is not the reality for most individuals, making the process for gaining and maintaining access to the NDIS incredibly arduous, and therefore beyond reach. For instance, there appears to be an arbitrary reliance by the NDIA upon the DSM levels as determining the needs of the Autistic person, although they were not designed for this purpose.

There are frequent reports from speech pathologists that:

“Many children with lots of potential are excluded automatically because they are level 1. Some also at level 2 (if parents can’t state their case well)”

“NDIS personnel not sufficiently trained to understand people who ‘appear’ to function at a higher level. Some planners have no idea about what an autistic person may need and that they may have co occurring disabilities. “

“Every time I speak with NDIS they ask me if the child is going to recover and grow out of the Autism“

“There is a very limited understanding of autism within the NDIS (Particularly very young children, girls, and verbal or bright children) and limited knowledge of or willingness to follow evidence based practice, lack of consideration of functional impact and focus on labels and levels (Which are considered by many to be outdated), often seems to be a “one size fits all” approach - opposite of the purpose of the NDIS. Often complete disregard for recommendations from trained and experienced professionals. Lack of easily accessible information about processes - often get a different answer each time you call. Most 16

frustratingly - it operates under an exclusionary model, requiring vulnerable people to fight for access for a scheme that should be designed to support access and reach out to them.“

Although the ability to exercise choice and control in choosing goals and providers has been welcomed by many families, there are many who report being impacted by the high emotional load of advocating for services, providing evidence, chasing reports and coordinating care. Some members report that they

have seen large differences  in dollar amounts  in plans  for those well-educated families who can

understand the system, and those from culturally and linguistically diverse backgrounds, who have varying levels of proficiency in English.

One member reports:

“I had two families living on the same street who both had Autism level 3. One received therapy supports for $2,000 and the other for $10,000. One was a migrant family lived in Commission housing and one wasn’t. When this was questioned, I was told that $2,000 was the limit for that age group. I provided a de-identified copy of the other child’s plan with the family’s permission, and was able to get the amount matched.”

The following member story highlights the tension many parents and therapists feel when providing and receiving services:

“I am lucky to have a supportive workplace, but other workers are not. This leads to systemic high turnover of staff, in a field where our clients need consistency more than anyone. NDIS plans do not consider the whole child because they do not consider the needs of the parent. I have seen parents that absolutely want the best for their child but they are drowning in appointments, because all 5 children have some level of ASD. They break down in tears because they have nobody else to talk to, and I can tell them about self-care but even to me the words are hollow, because when exactly do these parents have a moment of respite?”

The gruelling nature of the planning process seems unnecessarily painful and punishing for people who are at a time where they require understanding and support. This reflects the inadequacy of training for planners and LACs regarding Autism and disability in general. NDIS staff could have a greater trust in therapists to request supports that are reasonable and necessary on behalf of their clients, and more empathy for families in a very stressful time.

ii.   the  utility of the Early Childhood Early Intervention Pathway for Autistic

children

The Early Childhood Early Intervention (ECEI) Pathway demonstrates some benefits over the traditional pathway, in that ECEI partners are usually required to have a relevant qualification in the areas of

disability,  allied  health,  or  education.  This  often means  that  the ECEI  partners have a  better

understanding of the needs of Autistic people as compared to LACs or planners. Nevertheless, there are still some significant difficulties reported by members and families.

Waiting times to engage with the planning process are of a particular concern. Whilst young children should be prioritised to begin the access process, this is not always the case. An issue that has caused delays to access NDIS supports and services, and unnecessary added frustration and administrative burden to families, is the loss of Early Intervention applications/files. This seems to be occurring for a number of reasons including NDIA IT problems, administrative lapses or communication breakdown, indeed one family has reportedly had their application lost six times.

The ECEI pathway has a notion of ‘short to medium term’ supports however there appear to be no guidelines as to what these do or should entail. This often means it is left to the interpretation of the partner agency, developing further inconsistencies. The lengthy wait times can leave many families desperate for supports, whilst they wait to hear if they have been accepted, or for the plan to be instated, this is compounded when there are errors with the plan that require re-submission, which we understand still frequently occurs.

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Speech Pathology Australia members reported:

“Because nobody knows  their benchmarks/rules, providing evidence  is a nightmare and incredibly

stressful for parents”

“This ECEI pathway should be a bucket of funding for the age group to allow more families to seek support without having to deal with the application process (often up to 6-8 months, before receiving approval) to start therapy.”

“The system we had in WA while not perfect was known and working reasonably well with main issue waitlists. Issues were known and were being worked on collectively across the sector. NDIS has added complexity and confusion. It is very difficult to navigate especially with families with minimal English and low literacy levels. Previously we were able to support these families in navigating services. The ECEI process has complicated and shut us out leaving many families in limbo “

“EI service is very poor and this is in a well-resourced regional centre. Clients are not able to get service even with a diagnosis due to enormous demand. Often families are not given an estimate on how long it will be before they can access a service.“

The nature of the ECEI program means that different organisations tender for contracts which results in different geographical areas potentially having their own organisation, which functions differently to the service in another area. This also can confuse families in that they are being contacted by a service provider organisation e.g. The Brotherhood, and do not understand this is actually the NDIS. Additionally, the paperwork burden to access the pathway remains high, creating barriers for families from linguistically diverse backgrounds, or who have low literacy or disabilities themselves.

Again, the burden remains upon the family to advocate strongly for the supports they require, however they may only just be starting to learn about Autism and what this means, and not understand what they may need at that time. The process of having their supports reviewed is described by families as complex and arduous, and some may be discouraged from applying for review for fear that their supports will be removed altogether, Some children may be rejected, simply due to misunderstandings regarding the paperwork that is required, and some families may financially not be able to gather the necessary documentation, or be fearful of interacting with the medical system. These barriers are significant for families, particularly those from culturally or linguistically diverse backgrounds. Extensive community liaison and education to explain the NDIS, the ECEI pathway and the supports for children with Autism is sorely needed.

A member explains:

“It   is  extremely   difficult  for  families  of  children  with  Autism who  are  already  stressed  to

access [services] and funding unless they are extremely capable. The system depends on the capacity of the family to understand the needs of their child, what is an appropriate intervention - this changes - and to be able to advocate in a system that does not want to help.“

iii.   the  ability of the NDIS to support  Autistic people with complex needs,

including those transitioning from prison settings

A member discussed the following when addressing ‘complexity’:

“Firstly, people on the NDIS are, by any definition, already ‘complex’ as they have a significant disability. There are no ‘easy’ or even ‘less complex’ people with disability, at all. It is simply the mix of complexity that changes. Secondly, the disability is not the only thing that contributes to complexity, often all the other things make a client complex, such as family support and engagement with services, literacy level of family and other supports, access to other services including both other support services and general community services, level of rurality or remoteness which impact on things such as isolation, limited disability support workforce, limited basic community supports and transport issues, trauma, behaviour, siblings, other pulls on the family such as other family members that need support, transiency which can be a big issue with many families with disability. The actual disability is generally the least complex issue.” 18

This wholistic understanding of complexity is often lacking, as Autistic people accessing the NDIS are expected to fit in to one clearly marked area, but this is not the case. Autistic individuals may also have issues with trauma, additional diagnoses, or health concerns un-related to their disability, but where their care is impacted because they have Autism.

As one member reports:

“Complex needs generally are not well served. The NDIA seems to think it can divvy up people’s needs, but that’s not how it works, they are people, not pie”

NDIS planners do not have adequate supports in place to enable them to make decisions, based upon

the NDIS Act and the ‘reasonable and necessary’  criteria, that effectively take  in to account the

intersection of the health and disability sectors. It seems that as soon as there is any mention of a person with disability (such as Autism) needing to access the health system, the immediate response is that the NDIS is not responsible to provide any supports.

The NDIS needs to develop processes to help planners to understand their responsibility to fund core supports for people with Autism where they face additional barriers or have additional needs in order to participate in an episode of care within the health system. This is separate from the responsibility of the health system to fund health services and supports for people with disability just as they would for any other citizen. Currently Autistic people face barriers and delays to getting core or capacity building supports included in their plans to help prepare for or manage a planned engagement with the health service, for example, to support liaison with trained communication partners.

People with Autism are often caught in the middle of debates between the disability and health sectors regarding who should provide funding for the wrap-around or integrative services, or for transition to home. It is people with disability, including Autistic people, who are impacted by the implementation of a ‘hard line’ between NDIS and health services. There is a need for both systems to develop strategies and agreements around timely and streamlined processes to address issues of funding in order to support coordinated and collaborative care, and continuity of care for people with cognitive disability, both when entering and leaving health services.

Additionally, services are frequently siloed, even when the Autistic person has co-morbid diagnoses, or the need for a range of professionals, they will often have multiple therapists and/or organisations involved, but a lack of funding to allow them all to communicate and liaise effectively. Support co ordination is not automatically provided within plans, particularly for Autistic adults, and co-ordinating their own supports may not be possible.

As one member describes:

“NDIS has inadvertently fractured teams through business  restructuring, dismantling  of groups  of

expertise and coordination options, and under supply of skilled professionals for the demand.”

There are also issues around the market being able to provide timely and responsive community NDIS supports for people with Autism who have additional needs and require more specialised services. Due to the business model of the NDIS, with variable plan funding amounts, and inconsistent timelines for the commencement of funding, it is challenging for providers to be able to leave timeslots available to support these participants when they are transitioning out of the healthcare or justice services and into the community. This can result in NDIS participants with Autism remaining within the healthcare system longer than is necessary, or potentially having a gap without services. The wider impact of this is far reaching and can go as far as placing people in danger if the Autistic individual also has behaviours of concern.

These community supports are also lacking when Autistic people are released from the justice system, whereby underlying difficulties and behaviours of concern may directly contribute to further interactions with the justice system. People with complex communication needs are more likely to exhibit challenging behaviours as well as emotional and social difficulties.xxxviii People who have difficulty with comprehension

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of verbal instructions or the communication of their concerns to others in a socially acceptable manner, are more likely to exhibit challenging behaviour leading to offending behaviour.xxxix

The lengthy wait for a plan, and lack of advocacy within this process may mean that NDIS supports are not able to be put in place in time for the Autistic person to access them effectively. Certain supports, such as social workers are not routinely provided within plans, but as the Autistic person is accessing the NDIS, they may not always qualify for community or public services. Often these types of professionals do not work privately, or may be unable to register as providers if participants do have funding in this space, creating a huge gap in access to services.

As a member highlights:

“There are many people incarcerated with undiagnosed ASD I believe. More social work needs to be provided and many registered providers do not have social workers given families who need it usually don’t request this service”

iv. the adequacy and appropriateness of supports to empower Autistic people to participate in the NDIS planning process, and exercise self-determination through choice and control over their support services

Currently there are little to no supports offered to Autistic people participating in their own planning process, in regard to Autistic advocates (who often are Autistic themselves), support co-ordinators, or

therapists being able to attend. Meetings are frequently called with  little or no notice, making  it very

stressful for the participant and/or family, and therapists have been actively discouraged from attending to provide support. Support co-ordinators have also been told that they are not funded to attend these meetings, therefore sometimes providing this support free of charge to the participant, however frequently older children and adults are not even allocated support co-ordination within their plan and are expected to go it alone.

Parents are often the only ones who are involved in this meeting, obviously for underage children with Autism, but also sometimes for adults with Autism, particularly if they have an additional need such as a cognitive disability. Frequently the person with Autism is not present at the meeting at all, and there have been reports that LACs and planners have specifically told parents not to bring their child with a disability, or when they have attended out of necessity due to a lack of suitable care arrangements, planners have been reportedly ‘horrified’.

This further compounds the issue of planners and LACs lacking training in disability, as they frequently do not even meet the person with Autism, creating plans based upon a hypothetical.

Our members report:

“Planners have very low abilities to engage people with complex communication needs in conversations and therefore they are rarely included in the discussions and mainly defaulted to the family“

“The system is so complex and combative that many people with Autism find it overwhelming and therefore cannot access it without support”

Attempting to gain access for Autistic individuals is therefore often described as a ‘fight’ or ‘battle’. Those who are more willing, or able, to fight harder or for longer periods are more successful in gaining the necessary supports.

“Many parents and families are exhausted and exacerbated by a system, worried if they don’t use the right wording or say anything positive about their child they will not get adequate funding. Many battles for families and those without strong English skills or education are often left without support or understand the system. The process is exhausting families who are already spending all their energy supporting their children with disabilities”

Like many services, those for Autistic people living outside of metropolitan areas are limited. One member writes: 20

“In rural areas, there are limited service providers and limited choices around who to work with. There are only a few NDIS planners and if they don’t have a good idea about diagnosis and best practice, the person’s plan is often inadequate. Because of limited resources, people with autism often need to engage with service providers they don’t want to engage with as there is no other choice.”

Another reports:

“As a professional I am trying to seek further education to support adults with autism but I’m only one person in an area of over 10,500 square kilometres. “

Due to the complex presentation of Autism there is not a ‘one size fits all’ approach to interventions, or the needs and preferences of Autistic people. Greater flexibility and sensitivity on the part of NDIS staff is needed, with extensive training in this area, ideally involving Autistic individuals themselves.

i. the development of a National Autism Strategy and its interaction with the next phase of the National Disability Strategy

Speech Pathology Australia supports the development of a National Autism Strategy to assist in helping Autistic people participate at all levels in the decisions that affect their lives, including policy and program implementation. The Association also acknowledges the need for this strategy to support all people with diverse needs or disabilities, not just people who are eligible for the NDIS. A streamlined, national strategy will address many of the issues described previously that are caused by a lack of consistency in services funded through NDIS, other disability service providers and mainstream services (e.g. health), and the tendency for people to get bounced between systems without receiving services until their eligibility is determined.

j. the adequacy of funding for research into Autism As a profession that is strongly committed to evidenced based practice, Speech Pathology Australia endorses and acknowledges the important research conducted by organisations such as the Autism CRC Telethon Kids Institute and draws the Committee’s attention to their submissions and publicationsxl. Speech Pathology Australia would also like to acknowledge the tireless efforts of speech pathology academics educating future speech pathologists, as well as designing and evaluating programs to add to the large evidence base in the profession.

Speech Pathology Australia would like to highlight the research conducted by Whitehouse et al. (2019)xli which describes the emerging success of an early intervention program delivered by speech pathologists, highlighting the key role of the speech pathologist in the early stages of Autism identification. This is an important area for further funding and consolidation.

As stated previously, Speech Pathology Australia is also committed to providing a voice for those who do not have an adequate voice in society. Therefore, more research into the needs and wants of Autistic

people  from  diverse  backgrounds such as  First  Nations  people,  Autistic  people  with complex

communication needs,  Autistic people with  intellectual  disability,  Autistic people from the LGBTI+

community and those from culturally and linguistically diverse backgrounds is recommended, with a focus on providing inclusive ways for people to share their stories directly.

k. the social inclusion and participation of Autistic people within the economy and community

The barriers to participation in civic, political and economic life are due in part to a high level of ignorance

at a population  level about  disability and  disability  rights, and about the concept  of  participation

(inclusion). Furthermore,  there  is widespread misunderstanding about  the  nature  of Autism and

communication needs, a lack of knowledge about the range of supports, and multi-modal communication

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options, including AAC, available to help Autistic people who do not use speech to communicate and participate to their full potential. It is also very common for able-bodied and non-Autistic people to make assumptions which lead to discrimination against people with disabilities, particularly Autism, resulting in

reduced/inadequate supports being  provided which  affect an  individual’s  ability  to develop  their

communication skills.

Communication access is a prerequisite for participation in our communities by people with complex communication needs, including Autistic people. Supports for communication access and participation are provided by, under the direction of, or with input from speech pathologists, and draw on the knowledge and theoretical frameworks for the profession, including the World Health Organisation’s International Classification of Functioning, Disability and Health. Communication accessible environments are critical if individuals with communication disability are to engage in and use mainstream services and to participate in the community, education and employment sectors.

In the 2018 SDAC survey, 68.9 per cent of Autistic people reported having a profound or severe core activity limitation, that is, they need help or supervision with at least one of the following three activities: communication, self-care and mobility.xlii As the bulk of care was provided by informal carers (usually relatives or friends), this makes independent participation in community and economic life difficult for both the Autistic person and their carer/s.

A number of common themes emerging from the Speech Pathology Australia member survey included:

• People with both Autism and gender dysphoria, or Autistic people with high IQ and those in their late teens and early twenties with transition to adulthood needs tend to find fitting in to society difficult and do not have strong self-advocacy skills.

• It would be beneficial for those studying to become educators to learn about disability, Autism and inclusion during their training. This area is often currently studied as an elective subject or covered as

  a topic only. If the teachers and educators across all types of educational settings (including

mainstream settings) have the knowledge and skills in supporting individuals with Autism, true inclusion is more likely to be achieved.

• As Autistic people are seen as ‘different’ and ‘other’, there is lots of ‘othering’ and a need to fix Autistic people to make them fit the model of what is considered to be ‘socially appropriate’. Autistic people often can’t work because of this, whereas if Autism was seen more as neurodivergence, this might be different.

One member writes:

“I work with a family each year for 5 sessions to use their Medicare Chronic Disease Management Plan as this is all to family can afford to pay out of pocket- the $70 gap in the sessions. This young man is 19, with level 1 autism, and associated ADHD. We work on communication skills for interviews and written skills for university, but the young man doesn’t have the motivation to attend the interviews set up by his mother, and has failed his university course because of the organisation and planning needed to coordinate due dates and assignments. 5 sessions a year gets us nowhere. If this young man could have some funding for regular speech therapy and other supports, he might actually have a chance to get and keep a job.”

Another member highlights the issue of grouping Autistic people into specialised programs:

“There is not enough inclusive participation in the community, a lot of programs are with other Autistic people or other disabilities and limited to no neurotypical people participating (except for the program organisers). Unfortunately a lot of young adults with autism seek a friendship with a neurotypical individual but because they are not attending day programs/events with neurotypical people they don’t have the opportunity to build these friendships”.

l. the capacity and sustainability of advocacy, self-advocacy and self-determination supports for Autistic people, including mechanisms to self-represent to government 22

as enshrined in the United Nations Convention on the Rights of Persons with

Disabilities

At present, due to pervasive societal attitudes that see Autistic people as ‘different’ and ‘other’, and do not value alternative forms of communication, they often lack the opportunity to self-advocate for their rights. Frequently it is non-Autistic, neurotypical people who are presenting for, or making choices on behalf of the Autistic individual. This might be a parent, or someone within a care-giving capacity, or it may be an advocate from an organisation such as a support co-ordinator. Furthermore, people with disability, especially Autism, are mostly not aware of their rights. This is due to a lack of information about providing feedback or making a complaint, their self-perception as lacking the right or abilities to report, and potentially feeling that their role is simply to accept and/or be grateful for services.

This is partially due to many of these high level activities, such as advocating, or complaining, having certain rules placed around them, with a lack of consideration for the potential needs and comfort of Autistic individuals e.g. you must be quiet until asked to speak, wear particular clothes that might be uncomfortable, sit for lengthy periods of time, and be exposed to bright lights if you are to give evidence in a hearing. Some preferences of the Autistic person (such as wearing headphones, or sunglasses) may not be allowed in certain situations, and some calming or soothing behaviours such as tapping, rocking, clapping or pacing may be seen as inappropriate or aggressive. Many of these rules are unspoken within these situations, and therefore Autistic individuals may be unprepared for the expectations placed upon them when speaking up. Additionally, often no adaptations are offered to address the barriers to communication if speech is not the Autistic person’s preferred means of communication. Alternative communication forms require additional time to be provided both to send and receive the response, and there may be time pressures put upon the individual that are not conducive to effective communication.

In regard to determining their supports, as previously described, people with Autism may have their needs discussed without them present, and potentially supports put in place that reflect the desires of the parent or care-giver rather than the person themselves. Autistic individuals may need additional supports and adaptations to current systems to encourage their involvement. This may involve assuming competence on behalf of the person with Autism by asking for their input, and creating environments that take sensory and communication needs into consideration to assist the Autistic person to respond. Additional training and discussion with the Autistic community regarding best practice for hearings, submissions, court proceedings and other spaces where Autistic people may be required to advocate for themselves is needed.

m. any other related matters. There are significant difficulties in having augmentative and alternative communication (AAC)

recommendations for Autistic individuals accepted by NDIS staff. The Association has consistently been informed that the NDIS does not, have a ‘blanket’ ban on the provision of iPads as part of an AAC system, providing that the overall system being provided meets the reasonable and necessary criteria and yet iPads continue to be a point of contention.

For example, planners are reporting to participants that the NDIS does not purchase iPads because they are considered mainstream technology, and therefore refusing to fund the purchase of a tablet/iPad, but approving the cost of the iPad communication App. This has led to providers having to recommend (often much more costly) dedicated electronic AAC devices because the family or participant are not able to purchase the cheaper iPad, which would ONLY be used to support communication and participation.

Member experiences include:

“I know many of you have said you have had iPads funded by NDIS but in an email today a LAC assured me that these are considered ‘everyday devices’ and won’t be funded. This family is from a low socioeconomic family and don’t own an iPad. The child is doing so well using P2G [Proloquo2go AAC program] on the iPad I don’t think we need to go down the road of a dedicated device.”

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“And interestingly I’ve had two NDIA-managed clients who had applications for iPads turned down, as these were deemed to be a ‘lifestyle choice’ that could be reasonably funded from the clients’ own resources (notwithstanding that they couldn’t use the approved software without them). We had also argued that an iPad would be cheaper than applying for a dedicated device”

There are also examples of planners and/or LACs making decisions and recommendations which are outside their scope, without contacting the allied health professional concerned to talk through with them the basis for the recommendation, in order to be able to make informed and appropriate decisions about whether or not the device does in fact meet the reasonable and necessary criteria. This appears to often be the case when a particular AAC device is recommended with specific clinical reasoning, however this is over-ruled and the participant is told to get an iPad instead.

“I recently had a LAC suggest that an iPad would be a cheaper and more suitable option for my client and that an iPad would be funded by NDIS in preference to a dedicated device. It wasn’t a suitable option for my client and I provided detailed information to argue against an iPad and for a dedicated device in this instance…it takes 18 months and 3 AT applications plus detailed email as in this case”

“I’ve just had an application for an LR7 [Liberator Rugged 7; dedicated speech generating device] rejected by the NDIS, but they have told me they’re happy to fund an iPad with the software (even though my report clearly states two reasons why an iPad is not suitable and was not trialled!)”

Additionally, there have been numerous reports of planners and LACs recommending Allied Health Assistants and/or students who are seen by planners as a cheaper option to a qualified therapy provider. Whilst this is concerning from the point of view of expertise and quality service, it is also ineffective and potentially dangerous when no support or funding is included to provide for a qualified therapist to oversee them. This practice is yet another example of insufficiently trained NDIS staff making decisions about an Autistic individual’s support needs, which may be complex and require specialist assessment. This has the potential to impact negatively on the Autistic person if they are not receiving support from a suitably qualified and experienced provider.

Members report:

“We just had a planner tell one of our clients (again) they needed to get a therapist to write a plan then use a support worker to do the therapy and when client stated she was concerned that wouldn’t work due to complexity of her son’s condition (it would be extremely dangerous for this client) and what would happen in the plan needed to change he stated “Well then the support worker would have to figure that out.”

“Today I had the mother of a client who had just been approved for NDIS funding describe how her NDIS planner had advised her to use student therapists instead of qualified therapists to make her funding go further. She was told they do the same as qualified therapists. This mother is an educated & experienced user of therapy services, having two sons diagnosed on the spectrum, so she rejected the suggestion.”

“I have a client who I’ve seen 3 times with NDIS funding and is very happy with what I’m doing ask me

about getting a therapy assistant. They said that their planner has recommended  it as  it will make their

funding go further. I have had no contact from the planner at all. The client is a 2yo diagnosed with ASD”

And from a member’s client’s family:

“He has been allocated a small number of therapy hours and then a larger number of “therapy assistant” hours (at a rate of about $40). They want his therapists to only see him monthly or a couple of times a term and then a “program” to be carried out by therapy assistants. It is completely unacceptable from our point of view. I’m sure some things could be done in this way, but complex language or psychological therapies need fully qualified therapists. We are very upset that my sons plan has been funded in this way. We had clear reports from all his therapists and specialists. We even appealed (with further letters from his specialists) and we were still told they wouldn’t change it. We are now looking at going to AAT.”

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Recommendations

In summary, Speech Pathology Australia would request the Committee consider the following:

• NDIA to develop a program of training for planners, early intervention partners, LACs and support coordinators, in disability, particularly complex communication needs, AAC, and the vast level of need and abilities on the Autism spectrum and the crucial and common need for evidence-based speech pathology services

• NDIA to continue to liaise with Speech Pathology Australia and providers in order to address issues of therapist burn-out due to lack of providers, thin markets, and the need to embed paid

supervision/professional education time for both supervisors and newly graduated therapists working with people with Autism

• Remove the specification of level 2 or 3 on List A conditions that are likely to automatically meet disability requirement in section 24 of the NDIS Act, and include all people with Autism, particularly in

  the childhood, education and early adulthood foundational years. This will likely increase

independence and meaningful participation in the workplace and society during the adult years for both people with Autism and their families/support networks.

• Acknowledgement of the need and funding from the NDIA for necessary supports in transitioning of people with Autism to/from health care or the justice system.

  • Explore what supports people with Autism do, or are likely to need to access urgently, upon

discharge and consider developing some additional support items for provision of urgent/complex supports in the community at times of transition out of acute healthcare or justice services.

• Implement a system to allow for more flexible use of funds and access to rapid reviews of plans for participants with Autism due to a change in circumstances, or acute incident.

• For all planners, LACs and ECEIPs to be expected to contact the speech pathologist recommending a particular piece of Assistive Technology for further information if querying the appropriateness of the supports for the person with Autism.

  • For those people with Autism who may not be eligible for NDIS services, provide additional

government funding for speech therapy within the public and community health sectors to facilitate participation in social relationships, education, employment and healthcare.

• For children waiting for acceptance into early intervention and a diagnosis, invest in intensive speech therapy as a preventative strategy through public health or community health centres, rather than focusing on disputing eligibility or waiting for a diagnosis to secure funding.

• Facilitate early diagnosis and investment in people with Autism, so they can develop a positive identity and realise their full potential, however, do not only limit those supports to the early years.

• Engage a speech pathologist to provide a speech and language assessment for every person undergoing an Autism assessment, as a minimum, to understand their unique communication needs and ensure their diagnosis cannot be explained by another communication disability.

• Fund multidisciplinary clinics in public hospitals for Autism assessments in adults.

• Provide more comprehensive Medicare rebates for Autism assessment to reduce the burden on families seeking a private assessment, and extend both the assessment and treatment rebates to include adults

  • Provide additional funding for tertiary clinics to access training in best practice diagnostic

assessments, particularly in complex cases with a number of potential diagnoses or when providing a second opinion

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• Provide additional funding for training in accurately diagnosing girls and women on the Autism

spectrum, particularly in the Education, Health and Mental Health sectors.

• Build a greater understanding through training regarding how to conduct culturally appropriate Autism assessments with First Nations people and communities.

• Ensure training for all sectors (health, education, justice, mental health, housing, employment) in communication access, Autism, inclusion, and safe eating and drinking.

• Continue to consult with peak bodies such as Speech Pathology Australia about the National Assessment Guidelines and further implementation

• More awareness and funding for speech pathologists and others in understanding the needs of LGBTI+ people with Autism, with a particular focus on voice therapy for transgender people with Autism.

• Expand the concept of ‘universal access’ so that all workplaces should be communication accessible as standard for a diverse range of needs. Government support to be provided to encourage this adoption.

• Implement systems to improve communicative development opportunities for children with Autism and adults with complex communication needs. These include access to speech pathology services and facilitation of collaboration and coordination across the disability and education sectors in relation to the provision of supports in the education setting. Associated recognition that communication development, including literacy, is the most important and far reaching learning outcome that can be provided to people with Autism.

• Ensure supports such as School Leaver Employment Supports (SLES) funding is routinely provided in NDIS plans to support people with Autism to transition from education to work.

• Create and fund disability coordination, liaison and advocacy positions within all systems, including ‘champions’ for disability access and Autism who are working within higher level roles and are able to have influence on policy, budgets, and processes.

  • Ensure all policy making, high level investigations (such as Royal Commissions) and system

developments that are about people with Autism, involve, and encourage people with Autism to engage with the process by making them communication accessible, as well as providing any requested adaptations.

• Provide more funding incentives for speech pathologists to travel to rural and remote areas, to increase the access to supports for people with Autism in these areas.

If Speech Pathology Australia can assist the Committee in any other way or provide additional information

please  contact Ms Amy  Fitzpatrick,  Senior  Advisor  Disability

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References cited in this submission

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xv Carter, M., Roberts, J., Williams, K., Evans, D., Parmenter, T., Silove, N., & Warren, A. (2011). Interventions used with an Australian sample of preschool children with Autism spectrum disorders. Research in Autism Spectrum Disorders, 5(3), 1033-1041.

xvi Speech Pathology Australia (2016) Clinical Guideline: Evidence Based Speech Pathology Practice for Individuals

with Autism Spectrum Disorder

httos://speechpathologyaustralia.org.au/SPAweb/Members/Clinical_Guidelines/SPAweb/Members/Clinical Guideline s/Clinical_Guidelines.aspx ?hkey=0fc81470-2d6c-4b17-90c0-ced8b0fi2a5d

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vii Baird, G., Douglas, H. R., & Murphy, M. S. (2011). Recognising and diagnosing Autism in children and young people: summary of NICE guidance.BMuJ, 343, d6360.

xiii Taylor, L., Brown, P., Eapen, V., Midford, S., Paynter, J., Quarmby, L., Smith, T., Maybery, M., Williams, K. and Whitehouse, A. (2016). Autism spectrum disorder diagnosis in Australia: Are we meeting best practice standards? Autism Co-operative Research Centre. Retrieved August 7, 2019 from https://www.Autismcrc.com.au/.

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aged under 7 years in Australia, 2010-2012. Med J Aust 2015; 202 (6): 317-320. || doi: 10.5694/mja14.00328

xii Barbaro, J., Ridgway, L., & Disssanayake, C. (2011). Developmental surveillance of infants and toddlers by maternal and child Health nurses in an Australian community-based setting: Promoting the Early Identification of Autism spectrum disorders. Journal of Paediatric Nursing, 26, 334-347. DOI:10.1016/j.pedn.2010.04.007

iii Barbaro, J., Dissanayake. C. (2016). Diagnostic stability of autism spectrum disorder in toddlers prospectively identified in a community-based setting: Behavioural characteristics and predictors of change over time, Autism, 21, pp. 830-840, 10.1177/1362361316654084

«xiv May, T., Sciberras, E., Brignell, A., & Williams, K. (2017). Autism spectrum disorder: updated prevalence and comparison of two birth cohorts in a nationally representative Australian sample. BMJ Open, 7, 1-9. . doi: 10.1136/bmjopen-2016-015549

*V May, T., Brignell, A., Hawi, Z., Brereton, A., Tonge, B., Bellgrove, M.A., & Rinehart, N.J. (2018). Trends in the Overlap of Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder: Prevalence, Clinical Management,

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vi Australian Bureau of Statistics - Disability, Ageing and Carers, Australia: Summary of Findings, 2018, Autism in Australia. https://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4430.0Main+Features102018?0OpenDocument

»vil Australian Bureau of Statistics - Disability, Ageing and Carers, Australia: Summary of Findings, 2018, Autism in Australia. https://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4430.0Main+Features102018?0penDocument

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xxix Australian Bureau of Statistics - Disability, Ageing and Carers, Australia: Summary of Findings, 2018, Autism in Australia. https://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4430.0Main+Features102018?0OpenDocument

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22, 970-982. DOI: 10.1177/1362361317714587

»xi Bailey, B., & Arciuli, J. (2020). Indigenous Australians with autism: A scoping review. Autism, 24, 1031-046. httos://doi.org/10.1177/1362361319894829

»xil Jones, S., Akram, M., Murphy, N., Myers, P. & Vickers, N. (2019). Autism and Employment. Retrieved from https:/Awww.amaze.org.au/wp-content/uploads/2019/06/Employment-Communhity-Attitudes-and-Lived-Experiences

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xiv Amaze. (2018). Amaze Position Statement: Employment. Retrieved from: https://www.amaze.org.au/wp-content/uploads/2019/06/Amaze-Employment-March-2018.pdf

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xxxv See: Bower, C., Watkins, R.E., Mutch R.C., Marriott, R., Freeman, J., Kippin, N., Giglia, R. (2018) Fetal alcohol spectrum disorder and youth justice: a prevalence study among young people sentenced to detention in Western Australia. British Medical Journal. 8:e019605. doi:10.1136/ bmjopen-2017-019605

Hughes, N., & Chitsabesan, P. (2015). Supporting young people with neurodevelopmental impairment. Centre for Crime and Justice Studies. Retrieved from: https://www.crimeandjustice.org.uk/sites/crimeandjustice.org.uk/files/Supportingper cent20youngper cent20peopleper cent20withper cent20neurodevelopmentalper cent20impairment.pdf

xxxvi Bryan, K (2004) Preliminary study of the prevalence of speech and language difficulties in young offenders. International Journal of Language and Communication Disorders, 39(3), 391-400. doi: 10.1080/13682820410001666376

xxxvii Westerveld, M.F., Paynter, J., Trembath, D., Webster, A.A., Hodge, A.M., & Roberts, J. (2017). The Emergent

Literacy Skills of Preschool Children with Autism Spectrum Disorder. Journal of Autism and Developmental

Disorders, 47, 424-438. DOI 10.1007/s10803-016-2964-5

xxxviii See: Lindsay, G., Dockrell, J. E., & Strand, S. (2007). Longitudinal patterns of behaviour problems in children with specific speech and language difficulties: child and contextual factors. British Journal of Educational Psychology, 77(4), 811

828. doi: 10.1348/000709906X171127 Winstanley, M., Webb, R. T., & Conti-Ramsden, G. (2018). More or less likely to offend? Young adults with a history of identified developmental language disorders. International Journal of Language and Communication Disorders, 53(2), 256-270. doi: 10.1111/1460-6984.12339

xxxix See: Hopkins, T.K., Clegg, J., & Stackhouse, J. (2016). Young offenders’ perspectives on their literacy and communication skills. International Journal of Language and Communication Disorders, 51(1), 95- 109. doi: 10.1111/1460 6984.12188

Snow, P.C., & Powell, M. B. (2008). Oral language competence, social skills and high-risk boys: what are juvenile offenders trying to tell us? Children and Society, 22(1), 16-28. doi: 10.1111/j.1099-0860.2006.00076.x

Sanger, D., Moore-Brown, B.J ., Montgomery, J., Rezac, C., & Keller, H. (2003). Female incarcerated adolescents with language problems talk about their own communication behaviors and learning. Journal of Communication Disorders, 36(6), 465-486. doi: 10.1016/S0021-9924(03)00034-0

xl https://autism.telethonkids.org.au/

xli Whitehouse AJO, Varcin KJ, Alvares GA, Barbaro J, Bent C, Boutrus M, et al. Pre-emptive intervention versus treatment as usual for infants showing early behavioural risk signs of autism spectrum disorder: a single-blind, randomised controlled trial. The Lancet Child & Adolescent Health. 2019;3(9):605-15.

xlii Australian Bureau of Statistics - Disability, Ageing and Carers, Australia: Summary of Findings, 2018, Autism in Australia. https://www.abs.gov.au/AUSSTATS/abs@.nsf/Lookup/4430.0Main+Features102018?OpenDocument

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