NDIA Accountability Project

Submission 129 — Autism Queensland Ltd — Select Committee on Autism

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SENATE SELECT COMMITTEE ON AUTISM: RESPONSES TO TERMS OF REFERENCE

Submitted by: Autism Queensland
Date of submission: 19 August 2020

Autism Queensland is a member of the Australian Autism Alliance. Autism Queensland supports the key issues and recommendations made in the Australian Autism Alliance submission to the Senate Select Committee on Autism.

The following submission provides some additional information and recommendations based on feedback from Queensland autistic people and their families.

TERM OF REFERENCE (A): CURRENT APPROACHES AND BARRIERS TO CONSISTENT, TIMELY AND BEST PRACTICE AUTISM DIAGNOSIS

  • Diagnosis of adults is currently unfunded and results in considerable out-of-pocket expenses for adults
  • Medicare rebates are available for diagnosis of autism for children under 14 years, but these only cover a portion of the cost, therefore the cost of diagnosis is also a barrier for many parents.
  • Differential diagnosis of adults with co-occurring conditions is complex. Co-occurring conditions increase markedly when individuals on the spectrum progress through adolescence and become adults.
  • Waiting times to access diagnosis can be problematic, particularly in rural areas of Queensland.
  • Parents and autistic people often report that they do not receive adequate information time of diagnosis about service and support pathways, and many diagnosticians remain confused about NDIS and HCWA Medicare items since the cessation of HCWA Early Intervention funding. A more seamless referral and post-diagnostic support is required.
  • Autism Queensland supports calls by the Australian Autism Alliance, including extension of Medicare rebates to cover the full cost of assessments and diagnosis for children and adults and reduced waiting times for assessment.

In response to a Queensland-wide survey (Autism Queensland, 2017), 724 parents of children on the spectrum and 59 adults on the spectrum answered this question:

“Did you have any difficulties accessing the service that diagnosed you/your child?”
“If yes - please describe the difficulties.”

  • Yes 43%
  • No 57%

Nature and frequency of concerns about access to diagnostic services reported by respondents who answered “Yes”

  • Wait times for appointments: 59%
  • Travel/distance: 31%
  • Lack of services and/or diagnosticians with appropriate knowledge & training: 28%
  • Cost: 25%
  • Concerns not taken seriously/profs unwilling to refer or diagnose: 7%
  • Other: 7%
  • Reason not provided: 4%
  • Misdiagnosed initially: 4%

724 parents of children on the spectrum and 59 adults on the spectrum also answered this question:

“Did you have any concerns about the follow-up provided after you/your child was diagnosed?”
“If yes - please describe the difficulties.”

  • Yes 43%
  • No 57%

Nature and frequency of concerns about post-diagnostic follow-up reported by respondents who answered “Yes”

  • Lack of information/guidance/recommendations: 42%
  • Lack of appropriate referrals/coordination of care: 28%
  • Lack of any follow-up/support: 26%
  • Lack of emotional support: 10%
  • Reason not provided: 10%
  • Lack of services with appropriate HPs: 9%
  • Cost: 7%
  • Wait times: 4%
  • Other: 4%

“Delays in getting appointments” … “…access to services, need to travel, lack of professionals to diagnose, public health professionals unwilling to diagnose” … “Lack of service, lack of availability, ill-informed or not qualified enough, time, travel, cost.”

“Lack of emotional support, lack of appropriate referral to services that could help my child and myself” … “… basically just got the diagnosis and pushed away!” … “Continuing issues with poor coordination of care.”

TERM OF REFERENCE (D): INTERNATIONAL BEST PRACTICE WITH REGARDS TO DIAGNOSIS, SUPPORT SERVICES AND EDUCATION, EFFECTIVENESS, COST AND REQUIRED INTENSITY

Education services for children

Some parents of school students on the autism spectrum report that mainstream schools have not adequately accommodated the needs of their child. As a consequence, many families change schools frequently in search of a school that will meet their child’s needs, while other families elect to home school.

The need to change schools because the school is not a good fit

In response to a Queensland-wide survey (Autism Queensland, 2017) 647 parents of children on the spectrum and 59 adults on the spectrum answered this question:

“Has your child/have you ever had to change schools because the school wasn’t the right fit for him/her?”

  • Primary school-aged children (n = 403): 34%
  • Secondary school-aged children (n = 175): 53%
  • Adolescents and adults who have left school (n = 128): 53%

“If yes, please describe what the difficulties were, and when and how many times you/your child changed schools.”

  • Changed once: 181
  • Changed twice: 34
  • Changed 3 times: 26
  • Changed 4 times: 13
  • Changed 5 to 7 times: 4
  • About to change or wanting to change: 39

30% of those who had changed, had changed more than once

Number of times students changed schools

Reasons for changing schools across the school years (n = 681 responses)

  • Lack of appropriate support: 157
  • Bullied by other students: 109
  • Lack of understanding of students’ ASD: 70
  • Unfair/inappropriate treatment by teachers: 39
  • Lack of academic progress: 31
  • Exacerbated mental health issues (anxiety, depression): 28
  • Non-acceptance of students’ ASD (e.g. seen as naughty): 27
  • Student not coping: 23
  • Behavioural issues (bullying others, aggression): 23
  • Reason not specified/unclear: 22
  • Social issues/lack of friends: 22
  • Diagnostic issues: 21
  • Repeated suspensions: 18
  • Reduced attendance/parent often asked to collect student: 13
  • Neglect of student: 13
  • Lack of appropriate communication with family: 11
  • Exclusion: 11
  • Sensory issues/overload: 9
  • School/classes too big: 7
  • Medication issues: 6
  • School too small to have supports: 5
  • Lack of consistent teachers/change of teachers: 4
  • Lack of expectations of student: 3
  • School refusal: 3
  • Issues related to ADHD: 2

“We have tried several schools that said they could support my son, but they could do very little for him and he could not continue attending. He could not cope with the social environment of school and was not able to perform his calming rituals and behaviours. We left 4 schools in 3 years, not staying longer than 1 term in each. He was bullied more than enough at each school. The social pressures caused severe depression. Home education worked for a short time, but his symptoms were debilitating, and we had to find a school that could take him on. We moved the family to the city to find a school fit.”

Parental preferences re school placement options

In response to a Queensland-wide survey (Autism Queensland, 2017), 402 parents of primary-school aged children on the spectrum and 175 parents of secondary school aged children on the spectrum answered this question:

“What are your preferences regarding your child’s school placement?”

Respondents selected from options including regular classroom in a mainstream school, special education class in a mainstream school (not autism-specific), autism-specific class in a mainstream school, home school/distance education, special school (not autism-specific), autism-specific school, and a combination of part-time options.

Responses of parents of 402 primary school-age students

  • Regular mainstream classroom: Current 61.50% | Preferred 50.90%
  • Combination of part-time options: Current 17.80% | Preferred 12.90%
  • Special education class in a mainstream school: Current 7.20% | Preferred 5.70%
  • Autism-specific class in a mainstream school: Current 0.00% | Preferred 13.90%
  • Special school: Current 5.30% | Preferred 2.50%
  • Autism-specific school: Current 2.50% | Preferred 8.40%
  • Home school/distance education: Current 4.80% | Preferred 3.00%

Many parents prefer autism-specific classes or schools

Responses of parents of 175 secondary school-age students

  • Regular mainstream classroom: Current 48.90% | Preferred 42.90%
  • Combination of part-time options: Current 20.10% | Preferred 21.10%
  • Special education class in a mainstream school: Current 17.80% | Preferred 9.10%
  • Autism-specific class in a mainstream school: Current 0.00% | Preferred 10.90%
  • Special school: Current 9.20% | Preferred 1.10%
  • Autism-specific school: Current 1.10% | Preferred 9.10%
  • Home school/distance education: Current 2.30% | Preferred 4.60%

Many parents prefer autism-specific classes or schools

  • Regular mainstream school classrooms placements were the most preferred placements. However, around half of respondents identified an option other than a regular mainstream classroom as their most preferred option.
  • Of these other options, part-time options, autism-specific classes in mainstream schools, and autism-specific schools were the most preferred.
  • Parents described preferences for many combinations of part-time options including (a) regular mainstream classroom and a special education classroom, (b) home school/distance education and special education classroom, (c) home school/distance education and an autism specific school, and (d) regular mainstream classroom and an autism specific school.
  • The most notable differences between parent-preferred school placement options and current school placements were that parents preferred:
    • autism-specific classes in mainstream schools rather than special education classes that were not autism-specific
    • autism-specific schools rather than special schools.
  • This replicates the findings of a UK National Autistic Society nationwide survey which also found that parents value expertise in autism including autism-specific schools and autism-specific classes (Batten, Corbett, Rosenblatt, Withers, & Yuille, 2006)

Respondents to the Autism Queensland survey (2017) were asked to describe the reasons for their preferences regarding their child’s school placement.

Most common reasons for parental preferences for regular mainstream classrooms

  • To develop ability to socialise with mainstream peers: 20.6%
  • Learn to manage in a typical school environment: 10.3%
  • Preparation for real world adult life incl. employment: 9.9%
  • Don’t want to feel different/want to feel included: 9.4%
  • Child coping because of appropriate support: 7.2%
  • Child has academic capability to be in mainstream/requires extension: 5.4%

“Kids on the spectrum need to be around other children in mainstream schooling so they get some role modelling. When they are adults they will be around different kinds of people so its important not to shelter them from this.”

Most common reasons for parental preferences for autism-specific schools

  • Needs specialised support of an autism-specific school: 22.6%
  • Needs specialised understanding of autism: 17.7%
  • Has not coped well in mainstream/special school: 8.8%
  • Needs downtime/smaller class to cater for emotional/sensory needs: 6.9%
  • Needs differentiated learning strategies: 5.9%
  • Feels more included/safer around other students on the spectrum: 4.9%
  • Academic capabilities greater than special school expectations: 4.9%

“Autistic specific schools understand Autism. The child-to-teacher ratio is lower. It’s designed for their needs.
Mainstream schooling as it stands is useless for most of these kids.
Special schools deal with intellectual disability and a large percentage of Autistic kids are not intellectually disabled. Special schools do not cater for them.
Unless a mainstream school is small with smaller classrooms, autistic kids struggle. It’s just a sensory overload to enter a closed-in space with 20+ kids.”

Recommendations

  • The frequency with which students on the spectrum change schools suggests that there are many schools struggling to successfully include these students in regular mainstream classrooms. Around half of parents preferred options other than regular mainstream classrooms. These findings suggest that a range of placement options may be required to cater to the highly variable needs of students on the spectrum at different times during their school career. Examples include:
    • Mainstream classes
    • Autism-specific classes in mainstream schools
    • Dual enrolments (e.g., autism-specific school and mainstream school)
    • Smaller classes with a number of students on the spectrum, such as the ASD Nest program which has 4 students on the spectrum in a class with 12 typically developing students (Koenig, Bleiweiss, Brennan, Cohen. & Siegel, 2009)
  • Enhance education about autism of pre-service teachers and existing teaching staff in all schools
  • Increase levels of support for students on the spectrum in mainstream schools including access to teachers and allied health staff with autism-specific expertise.
  • Improve education around school bullying including government education programmes and campaigns to increase awareness of bullying and consequences
    • Increase accountability and responsibility for bullying including the family and parents of the perpetrators.
    • Supervised lunchtime programs for students who are vulnerable to bullying such as those on the spectrum (Carrington et al., 2017).
  • Offer more support in schools for students on the spectrum in mainstream schools who have autism and co-occurring conditions including specific learning disorder, intellectual impairment, language disorders and mental health conditions such as anxiety and depression
  • Offer support to prevent the development of mental health issues in school-aged children on the spectrum particularly in secondary schools, when mental health issues often increase (see below).

Mental health issues of adults on the spectrum

Respondents to Autism Queensland’s survey (2017) were asked to indicate other formal diagnoses that the person on the spectrum had been given, including anxiety disorder and depression. Mental health issues were found to increase as children on the spectrum. mature into adulthood.

Mental health issues reported by respondents to Autism Queensland’s Have Your Say survey (2017)

  • Children yet to start school (n = 84): Anxiety Disorder 2.3% | Depression -
  • Primary school-age (n = 403): Anxiety Disorder 26% | Depression 4%
  • Secondary school-age (n = 175): Anxiety Disorder 44.5% | Depression 14%
  • Adolescents & adults who have left school (n = 128): Anxiety Disorder 59% | Depression 48%

Research findings re mental health in adults on the spectrum

  • Over half of Australian autistic adults have diagnosed mental health conditions. Autism Queensland’s survey of 128 autistic adults (2017) found 59% have diagnosed anxiety disorders and 48% are diagnosed with depression.
  • Other Australian (Aspect, 2013) and international (Hofvander et al, 2009; Lugnegård, Hallerbäck, & Gillberg, 2011) studies of autistic adults report similarly high rates of mental health conditions of 50% or greater.
  • Alarmingly, Cassidy et al. (2014) reported that 66% of adults newly diagnosed with ASD contemplate suicide (compared to 17% of the general population) and 35% plan or attempt to end their lives. Paquette-Smith, Weiss and Lunsky (2014) also reported a 36% suicide attempt rate in 50 autistic adults, greatly exceeding the 4.6% general population lifetime prevalence rate.
  • Autistic adults have been found to be over 10 times more likely to be admitted to a psychiatric hospital than neurotypical people (Weiss et al., 2018).

Anecdotally, autistic people with mental health conditions are often excluded from community mental health services primarily because mental health professionals lack confidence in working with them. This is despite evidence to support the effectiveness of psychotherapies such as cognitive behaviour therapy and mindfulness-based stress reduction with autistic people (Lang, Register, Lauderdale, Ashbaugh, & Haring, 2010; Sizoo & Kuiper, 2017). Rather, medications such as antidepressants are often relied upon to treat the mental health conditions of autistic people (Jobski, Hőfer, Hoffmann & Bachmann, 2016). As antidepressants are often ineffective in this population, Jobski et al. (2016) suggest that they should only be prescribed for selected cases. The lack of effective preventative community-based services can lead to a deterioration in the mental health of autistic people and subsequent psychiatric hospital admission, which is expensive and distressing, given their inability to cope in unfamiliar environments (Weiss et al. 2018).

Factors that may impact on the mental health of adolescents and adults on the spectrum include:

  • Lack of meaningful occupation
  • Social isolation
  • Increased complexity of social interactions
  • Bullying
  • Increased awareness of social challenges (Haertl, Callahan, Markovics, & Strouf Sheppard, 2013).

Recommendations

  • Provide services and supports for adults on the spectrum to ensure that they are socially connected
  • Provide services and supports for adults that offer meaningful occupation (e.g., employment, interest-based programs, volunteering)
  • Improve access of autistic adolescents and adults to community-based mental health services
  • Increase the autism-specific knowledge of community-based mental health service providers.

TERM OF REFERENCE (G): THE SOCIAL AND ECONOMIC COST OF FAILING TO PROVIDE ADEQUATE AND APPROPRIATE SERVICES, INCLUDING TO SUPPORT KEY LIFE STAGE TRANSITIONS OF AUTISTIC PEOPLE

Autism Spectrum Disorder has been found to produce an economic cost of $9.7 billion per annum in Australia (Synergies Economic Consultants, 2011). The most significant factors that contributed to the economic cost were:

  1. reduced income due to less/no paid work
  2. informal care (provided by families)
  3. reduced quality of life, and
  4. reduced well-being.

In response to Autism Queensland’s survey (2017), 730 parents of children on the spectrum responded to this question:

“Do you currently do less paid work than you would like to (e.g., work less hours, or not work at all) because you need to care for your son/daughter with autism? If yes, please provide details.”

Responses of 84 parents of children yet to start school

Percentage who reduced or abandoned paid work to care for their autistic child

Reasons for reducing or abandoning paid work

Parents of 402 Primary school age children

Percentage who reduced or abandoned paid work to care for their autistic child

Reasons for reducing or abandoning paid work

Parents of 175 Secondary school age children

Percentage who reduced or abandoned paid work to care for their autistic child

Reasons for reducing or abandoning paid work

Parents of 69 young people who have left school

Percentage who reduced or abandoned paid work to care for their autistic son or daughter

Reasons for reducing or abandoning paid work

“I cannot leave my son to go out to work. My other children and I find ourselves in financially frightening circumstances. We cannot find another rental property because I am caring for my son, and we are almost destitute. I do not think other people/services realise how frightening this is. I provide my son with a sense of safety and security, and he is free to be himself and to achieve whatever he can achieve, but it comes at a great cost.”

How can we improve services to support parental workforce participation?

  • Improved quality and availability of in-home care/respite services
  • Early intervention and therapy services embedded within early childhood services
  • Autism-friendly and informed schools to overcome the need for parents to collect their children early, or home-school their children
  • Autism-friendly and informed after-school and vacation care
  • Autism-friendly and informed mental health services for children, adolescents and adults on the spectrum
  • Family supports focusing on improving parental mental health
  • Improved supports in tertiary education for students on the spectrum
  • Autism-friendly and informed workplaces to enable workforce participation of adults on the spectrum
  • Improved quality and availability of community access/day care services for adults on the spectrum
  • Services aimed to improve the independence of adults on the spectrum (e.g., meal preparation, household chores, catching public transport, money management, driving and relationships)

Targeting these factors would enable individuals on the spectrum and their families to access more support, enable parents to work, and increase quality of life and well-being. In turn, this would not only reduce the economic cost of autism in Australia but contribute to the Australian economy through the increased employment of autistic people and their families.

TERM OF REFERENCE (H): THE ADEQUACY AND EFFICACY OF THE NATIONAL DISABILITY INSURANCE SCHEME (NDIS) FOR AUTISTIC PEOPLE, INCLUDING AUTISM UNDERSTANDING WITHIN THE NDIS

Improved pathways to support

  • Autism Queensland supports the Australian Autism Alliance’s call for NDIS reforms including automatic access to the scheme for young children with an autism diagnosis and a specific autism and neurodevelopmental pathway.
  • Autism Queensland receives multiple requests daily from parents and autistic people all over Queensland seeking support and information regarding the NDIS. Many of them report being confused by the complexity of the process and distressed at being unable to access clear, consistent information or guidance. Many diagnosticians are also unclear about the pathway and unable to provide accurate information.
  • NDIS and NDIS partner staff require additional training to enhance their understanding autism and to develop effective ways of engaging with people on the spectrum in order to gain an insight into the way that they are functioning in a range of area and settings. By gaining a deeper understanding of the needs of the person on the spectrum, planners will be better equipped to suggest appropriate services and to develop more effective plans.

Improved acknowledgment and support of the critical roles of families and carers

  • Due to the way that NDIS individual funding is structured, autism services focus on the needs of the person with the disability, and many families feel their need for information and support is ignored. Neglect of the broader family context can impact negatively on the family’s capacity to support their autistic child.
  • Since the introduction of NDIS, many important supports for families such as respite, sibling programs and parent programs are no longer funded and have therefore closed. Families of autistic children can experience higher levels of stress than those of typically developing children and children with other disabilities (Hayes & Watson, 2013). Providing adequate support for families will build family resilience which will have a positive influence on their ability to support their autistic child and lead to improved social and economic benefits for the family and child.
  • Young children require family-centred plans that identify and support active family engagement in the child’s early intervention. Many of the wrap around supports for families are currently not funded or not adequately funded under the child’s individual funding package. The development of programs should be driven by child and family needs and evidence-informed practice, rather than being driven by the price guide.
  • Parents and carers of children recently diagnosed with autism or who think their child may have autism need access to information about autism, strategies and pathways of support. Under the HCWA package (DSS funded program), Early Days Workshops are available to parents and carers of young children with autism or those who may have autism. These workshops provide current, high quality, evidence informed information to parents and in a range of face-to-face, telephone and webinar formats. This flexibility has ensured information has continued to be available to families throughout the pandemic. Many families tell us that this is the first practical information they have received about autism as they wait for other services and supports. Since 2011 approximately 3300 workshops have been delivered nationally for approximately 26,500 parents and carers, however Early Days will cease at the end of June 2021. Continuation of the Early Days Workshops Program is recommended to provide parents and carers of young children access to current, high quality information.

Need to empower autistic people to participate in the NDIS planning process, and exercise self-determination through choice and control

  • When people on the spectrum attend NDIS planning, they are asked to identify (a) their short-term goals and (b) their medium to long-term goals. This can be challenging for people on the spectrum due to their social and communication challenges and social anxiety (Hagner, May, Kurtz, & Cloutier, 2014).
  • The use of the Adolescent/Adult Goal Setting Tool (AAGST) (Ashburner et al., 2019) by NDIS planners would empower people on the spectrum by making it easier for them to identify, prioritise and articulate their goals.
  • The AAGST is a picture-based card sorting tool which capitalizes on the relative strengths of people on the spectrum in processing pictures rather than words (Kamio & Toichi, 2000).
  • Information is presented in concrete ways, which is more accessible to people on the spectrum than information presented in more abstract ways (Falk Ross, Iverson & Golbert, 2004).
  • Similarly, the use of the Family Goal Setting Tool by NDIS planners would empower families of young children on the spectrum by making it easier for them to identify, prioritise and articulate their goals (Jones, Rodger, Walpole, & Bobir, 2018).

NDIS funding of group interventions and supports

  • The sudden changes to the 2020 NDIS Price Guide have greatly increased the administrative complexity of the provision of group interventions and supports. This creates a significant barrier to the provision of group-based and innovative support options. For example, since 2014, Autism Queensland has been running a highly successful evidence-based group program focusing on mentoring young adults on the spectrum in the digital creative arts (Ashburner, Bobir & van Dooren, 2018). Participants are supported by therapists and mentors, with digital creative arts expertise, many of whom also have lived experience on the autism spectrum. This model was developed under and supported by previous price guides, however with little notice and no consultation, this model is no longer supported in the 2020 price guide. It has made the future of this highly successful program for autistic adolescents and young adults uncertain due to administrative complexity and financial unsustainability. The latest price guide has a bias towards more traditional one-on-one therapy and supports, which ignore the fundamental need for autistic participants to build social skills and confidence with peers in safe group settings.
  • The primary aim of many interventions for people on the spectrum is to develop social/communication skills. Individual therapy and support can be less efficacious than group programs in addressing social skills goals with peers such as reciprocal communication, sharing, turn-talking, conversational skills, and cooperative play or leisure skills (Roberts et al., 2011).
  • Group interventions and supports are often the most appropriate and requested option for people on the spectrum of all ages, including early intervention, school-age and adult interventions.
  • Individual therapy and supports are also more expensive and are therefore often shorter and less frequent, which further reduces their efficacy.

Protection of NDIS participants on the spectrum when services are delivered by providers who are not registered with the NDIS

  • Participants or their carers often require support workers to be providing supports relating to the participant’s personal, health and safety needs (e.g. physical intervention due to behaviours of concern, carrying out PEG feeding and maintenance).
  • If the support worker is employed by an agency that has chosen not to be NDIS-registered, or the worker is self-employed and has chosen not the be NDIS-registered, it can mean that the support worker is not provided with or obliged to undergo officially ratified training to carry out these tasks correctly.
  • This represents a significant risk to the participant and can reduce the potential benefits from some supports, e.g., a registered specialist behaviour support provider working with an unregistered support worker with a participant for whom physical intervention may occasionally be needed for safety purposes. Accredited training in physical intervention techniques is a pre-requisite for the implementation of such a strategy but where the support worker does not have that training, the physical intervention strategy is not able to be recommended by the registered specialist behaviour support provider as the risks to participant and worker are considerable.

TERM OF REFERENCE (K): THE SOCIAL INCLUSION AND PARTICIPATION OF AUTISTIC PEOPLE WITHIN THE ECONOMY AND COMMUNITY

Current participation of adolescents and adults on the spectrum after leaving school

Sixty-nine parents of adolescents and adults on the spectrum who had left school responded to this question on Autism Queensland’s survey (2017):

“Which of these options best describes the way that your son/daughter spends most days?”

Respondents selected from options including (a) tertiary education/training, (b) day program/community access (c) employment, (d) staying at home and (e) volunteering. Their sons and daughters were aged 16-45 years (mean age 22 years)

Of those who stayed at home most days, most would prefer another daily occupation:

This finding suggested that although many adolescents and adults are spending a lot of time at home with little meaningful activity in their lives, the majority would prefer to be meaningfully engaged (e.g., working, studying or attending a day program).

Tertiary education

Sixty-nine parents of adolescents and adults on the spectrum who had left school responded to this question on Autism Queensland’s survey (2017):

“Has your son/daughter previously commenced tertiary education or training but not completed it? If yes, please describe any difficulties he/she experienced.”

Around 29% of 69 adolescents and adults were reported to start but not complete tertiary education courses. The most common reasons are shown below.

Parent-reported current daily activities of 69 adolescents and adults on the spectrum

Reasons for not completing tertiary education

Independent Living of 69 adolescents and adults (parent report)

Sixty-nine parents of adolescents and adults on the spectrum who had left school responded to this question on Autism Queensland’s survey (2017):

“Where is your son/daughter living?”

The parents also answered this question:

“If your son/daughter lives independently, do you need to provide regular support? If yes, please describe the type of support.”

Type of support provided, if living independently

Recommendations

  • Of 41% of young people on the spectrum staying home most days, most would prefer to be working (48%), studying (17%) or attending a day program (17%). Staying at home without any form of regular daily activity often leads to an entrenched reluctance to leave the house due to anxiety, and often ultimately exacerbates their mental health issues. As many young people may not transition to any meaningful activity after leaving school, there is a critical need for effective post-school transition programs.
  • The challenges experienced by young people on the spectrum in tertiary education suggests a need for better support in tertiary education. In particular, peer mentoring programs at universities have been found to be an economical and highly effective approach to support autistic university students (Thompson, McDonald, Kidd, Falkmer, Bölte, & Girdler, 2020)
  • The challenges experienced by young autistic people in living independently suggests the need for living skills programs such as travel training, meal preparation, money management and budgeting programs.

Employment

People on the spectrum are under-represented in the workforce.

  • The unemployment rate for people on the spectrum was 34.1%, more than three times the rate for people with disabilities in general (10.3%) and almost eight times the rate of people without disability (4.6%) (Australian Bureau of Statistics, 2018) .
  • A recent NDIS quarterly report found that only 15% of participants on the spectrum aged 15 to 24 years were employed, as compared to 19% of those with an intellectual disability, and 19% of those with Down Syndrome (National Disability Insurance Scheme, 2018).
  • The most common barriers to employment include social and communication difficulties, such as poor interview skills and difficulty following directions (Neary, Gilmore & Ashburner, 2015).
  • Many Australian autism-specific employment programs have focused primarily on jobs in information technology (IT) and data management (Flower, Hedley, Spoor and Dissanayake, 2019).
  • People on the spectrum can have a wide range of strengths and interests. While many people on the spectrum have strengths and interests in IT, others have interests in other areas (Lorenz & Heinitz, 2014). People on the spectrum have a wide range of abilities ranging from those who are academically gifted to those who experience learning and language comprehension challenges.
  • Employment programs that are autism-specific have been found to be more successful than generic employment programs (Wilczynski, Trammell & Clark, 2013).

Recommendations

  • There is a need for more inclusive autism-specific employment programs that accommodate job seekers with a wide range of abilities and interests. For example:
    • Job seekers with no post-school qualifications or experience require low-skill, entry-level positions.
    • Job seekers with university degree qualifications require high-skill professional positions.
  • Employment programs should be provided by professionals with skills and experience in working with people on the spectrum
  • Autism-specific workplace supports are required. These may include visual schedules and instructions, video-modelling, explicit written rather than oral instructions, use of cues and reminders using technology, and social narratives and scripts (Wilczynski, Trammell & Clark, 2013).
  • Supervisors and co-workers require training to assist them in understanding autism and the best way to support individual employees on the spectrum, and
  • Workplace audits should involve detailed analyses and adaptation of tasks and environments to suit people on the spectrum.

References

Ashburner, J., Bobir, N. I. & Kate van Dooren, K. (2018). Evaluation of an innovative interest-based post-school transition programme for young people with autism spectrum disorder, International Journal of Disability, Development and Education, 65 (3), 262-285, DOI: 10.1080/1034912X.2017.1403012

Ashburner, J. Jones, J., Tomkins V., Bobir, N., McLucas, R., Taylor J. & Lister J. (2019). The development and evaluation of a goal setting tool for adolescents and adults on the spectrum. Full report. Cooperative Research Centre for Living with Autism, Brisbane. Full report. Cooperative Research Centre for Living with Autism, Brisbane. Retrieved from https://www.autismcrc.com.au/sites/default/files/reports/3-047_AAGST_Final-Report_2019.pdf

Australian Bureau of Statistics (2018). ABS Survey of Disability, Ageing and Carers: Summary of Findings 2018, Canberra: Author.

Autism Queensland (2017). “Have Your Say” Survey Report. Brisbane, Australia, Author.

Autism Spectrum Australia (Aspect). (2013). We belong: The experiences, aspirations and needs of adults with Asperger’s disorder and high functioning autism. Sydney: Author. Retrieved from http://www.autismspectrum.org.au/content/we-belong-report

Batten, A., Corbett, C., Rosenblatt, M., Withers, M., & Yuille, R. (2006). Make school make sense. Autism and education: the reality for families today. The National Autistic Society, London, UK.

Carrington, C., Campbell, M., Saggers, B., Ashburner, J. Vicig, F., Dillon-Wallace, J. & Hwang, Y. (2017). Recommendations of school students with autism spectrum disorder and their parents in regard to bullying and cyberbullying prevention and intervention, International Journal of Inclusive Education, 21 (10), 1045-1064. DOI: 10.1080/13603116.2017.1331381

Cassidy, S., Bradley, P., Robinson, J., Allison, C., McHugh, M., & Baron-Cohen, S. (2014). Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinical cohort study. Lancet Psychiatry, 1, 142–47 http://dx.doi.org/10.1016/S2215-0366(14)70248-2

Falk-Ross, F., Iverson, M., & Gilbert, C. (2004). Teaching and learning approaches for children with Asperger’s Syndrome. Teaching Exceptional Children, 36(4), 48-5.

Flower, R. L., Hedley, D., Spoor, J. T., & Dissanayake, C. (2019). An alternative pathway to employment for autistic job-seekers: a case study of a training and assessment program targeted to autistic job candidates. Journal of Vocational Education & Training, 71(3), 407-428, DOI:10.1080/13636820.2019.1636846

Hagner, D., May, J., Kurtz, A., & Cloutier, H. (2014). Person-centred planning for transition-aged youth. Journal of Rehabilitation, 80(1), 4-10.

Haertl, K., Callahan, D., Markovics, J. & Strouf Sheppard, S. (2013). Perspectives of adults living with autism spectrum disorder: Psychosocial and occupational implications, Occupational Therapy in Mental Health, 29 (1), 27-41, DOI: 10.1080/0164212X.2012.760303

Hayes, S. A. & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 629–642. DOI 10.1007/s10803-012-1604-y

Hofvander, B., Delorme, R., Chaste, P., Nydén, A., Wentz, E., Ståhlberg, O., & … Leboyer, M. (2009). Psychiatric and psychosocial problems in adults with normal-intelligence autism spectrum disorders. BMC Psychiatry, 9, 35–44. doi:10.1186/1471-244X-9-35.

Jobski, K., Hőfer, J., Hoffmann, F., & Bachmann, C. (2016). Use of psychotropic drugs in patients with autism spectrum disorders: A systematic review. Acta Psychiatrica Scandinavica, 135(1), 8-28. doi: 10.1111/acps.12644.

Jones, J., Rodger, S., Walpole, A., & Bobir, N. (2018). Holding the cards: Empowering families through an ASD Family Goal Setting Tool. Topics in Early Childhood Special Education. Advance online publication. DOI:10.1177/0271121418766240

Kamio, Y., & Toichi, M. (2000). Dual access to semantics in autism: Is pictorial access superior to verbal access? Journal of Child Psychology and Psychiatry, 41(7), 859-867

Koenig. K. P., Bleiweiss, J., Brennan, S., Cohen, S. & Siege, D. E. (2009). The ASD Nest Program. A Model for inclusive public education for students with autism spectrum disorders. Teaching Exceptional Children, 42 (1), 6-13.

Lang, R., Regester, A., Lauderdale S., Ashbaugh, K., & Haring, A. (2010). Treatment of anxiety in autism spectrum disorders using cognitive behaviour therapy: A systematic review. Developmental Neurorehabilitation, 13(1), 53–63. DOI: 10.3109/17518420903236

Lorenz, T., & Heinitz, K. (2014). Aspergers – Different, not less: Occupational strengths and job interests of individuals with asperger’s syndrome. PLoS ONE, 9(6), e100358. doi:10.1371/journal.pone.0100358

Lugnegård, T., Hallerbäck, M. U., & Gillberg, C. (2011). Psychiatric comorbidity in young adults with a clinical diagnosis of Asperger syndrome. Research in Developmental Disabilities, 32(5), 1910–1917. doi:10.1016/j.ridd.2011.03.025

National Disability Insurance Scheme (2018). Outcomes for participants with Autism Spectrum Disorder (ASD). Canberra, Author. Retrieved from https://data.ndis.gov.au/reports-and-analyses/outcomes-participants-autism-spectrum-disorder

Neary, P., Gilmore, L., & Ashburner, J. (2015). Post-school needs of young people with high-functioning autism spectrum disorder. Research in Autism Spectrum Disorders, 18, 1–11. doi:10.1016/j.rasd.2015.06.010

Paquette-Smith, M., Weiss, J., & Lunsky, Y. (2014). History of suicide attempts in adults with Asperger syndrome. Crisis: The Journal of Crisis Intervention and Suicide Prevention, 35(4), 273–27.

Roberts, J., Williams, K., Carter, M. Evans, D., Parmenter, T., Silove, N., Clark, T., & Warren, A. (2011). A randomised controlled trial of two early intervention programs for young children with autism: Centre-based with parent program and home-based. Research in Autism Spectrum Disorders, 5, 1553–1566. doi:10.1016/j.rasd.2011.03.001

Sizoo, B. B., & Kuiper, E. (2017). Cognitive behavioural therapy and mindfulness based stress reduction may be equally effective in reducing anxiety and depression in adults with autism spectrum disorder. Research in Developmental Disabilities, 64, 47–55. http://dx.doi.org/10.1016/j.ridd.2017.03.004

Synergies Economic Consultants (2011). Economic Costs of Autism Spectrum Disorder in Australia. Australia, Author.

Thompson, C., McDonald, J., Kidd, T., Falkmer,T. Bölte, S. & Girdler, S. (2020). “I don’t want to be a patient”: Peer mentoring partnership fosters communication for autistic university students. Scandinavian Journal of Occupational Therapy. Published online ahead of print. https://doi.org/10.1080/11038128.2020.1738545

Weiss, J. A., Isaacs, B., Diepstra, H., Wilton, A. S., Brown, H. K., McGarry, C. & Lunsky, Y. (2018). Health concerns and health service utilization in a population cohort of young adults with autism spectrum disorder. Journal of Autism & Developmental Disorders, 48, 36–44. DOI 10.1007/s10803-017-3292-0

Wilczynski, S. M., Trammell, B., & Clarke, L. S. (2013). Improving employment outcomes among adolescents and adults on the autism spectrum. Psychology in the Schools, 50(9), 876-887. DOI: 10.1002/pits.21718