Submission 49 — Yellow Ladybugs — Select Committee on Autism | External submission

Autistic Girls and Women – Yellow Ladybugs Submission

to the Select Committee on Autism – July 2020

Introduction………………………………………………………………………………..Page 1

About Yellow Ladybugs………………………………………………………………..Page 1

Recommendation 1……………………………………………………………………..Page 1 Development of a National Autism Strategy that prioritises funding for autistic-led organisations such as Yellow Ladybugs

Recommendation 2……………………………………………………………………..Page 2 Select Committee Inquiry to prioritise autistic voices and autistic-led organisations throughout the Inquiry such as Yellow Ladybugs

Recommendation 3………………………………………………………………………Page 3 The ‘misdiagnosis and under-representation of females in autism data, and gender bias in autism assessment and support services’ is addressed on a national level as a matter of urgency

Recommendation 4………………………………………………………………………Page 4 Improved services to support the Mental Health needs of autistic girls and women

Recommendation 5………………………………………………………………………Page 7 The education needs of autistic girls need to be addressed specifically with national consistency in mind

Recommendation 6………………………………………………………………………Page 9 The NDIS better understands and supports the hidden needs of autistic girls and women

Recommendation 7………………………………………………………………………Page 10 A national approach and investment in the social inclusion and participation of autistic girls and women within the economy and community

Recommendation 8………………………………………………………………………Page 11 Investigation and national support to ensure the capacity and sustainability of advocacy, self-advocacy and self-determination supports for autistic girls and women

Recommendation 9………………………………………………………………………Page 12 Investigation and redevelopment of the family law system to better understand, protect and support autistic mothers

Appendices…………………………………………………………………………………..Page 13

17 July 2020

Yellow Ladybugs Submission: Select Committee on Autism

Introduction

Yellow Ladybugs is grateful for the opportunity to make a submission to the Select Committee on Autism. In making this submission, Yellow Ladybugs intends to further its stated mission to improve the lives of autistic girls and women1 and gender diverse individuals by ensuring that we are seen, heard, supported and valued. As an autistic-led organisation, our submission also reflects both the lived experience and the professional expertise of the actually autistic community. We request a specific hearing focused on autistic girls and women so we can discuss and give justice to the multiple recommendations made.

Autistic women and girls currently comprise around one in four autism diagnoses in Australia. Strong anecdotal evidence and “Many people still have a narrow view of autism and girls and women continue to be under-represented in research suggests the actual prevalence of autism amongst accessing recognition of their neurology. We are women and girls to be considerably higher. Understanding beginning to see a shift, but it is not consistent across around autistic women and girls forms a relatively new Australia. Therefore, many autistic girls and women (and gender diverse individuals) commonly fly under the radar discipline and as recently as the mid-1990s, women and girls and miss out on a diagnosis until much later in life - if at were thought to comprise only one in 25 diagnosed autistic all. We are all too often misdiagnosed, misunderstood or missed completely. The negative impacts caused by this people. Autistic girls and women have been overlooked are lifelong and come at not only a personal cost to us historically due to the gender bias of standard diagnostic tools but to our family and our community as a whole. We and the socialisation of girls to perform a more submissive need to do a lot better at understanding and supporting autistic girls and women.” gender role. The issues raised and recommendations proposed KATIE KOULLAS, CEO – YELLOW LADYBUGS will reflect the layered vulnerabilities, economic disadvantage and inequality in healthcare and diagnosis autistic girls, women and gender diverse individuals face. Furthermore, autistic girls have restricted access to education, limited access to communities and their autistic peers (Appendix 10). Autistic girls and women have a higher rate of co-occurring conditions such as anxiety, depression and eating disorders and this must be treated in the context of autism. Many autistic girls and women are often misdiagnosed, misunderstood and missed completely.

About Yellow Ladybugs

Yellow Ladybugs is an autistic-led non-government organisation with strong bridges to the community. We are dedicated to the happiness, success and celebration of autistic girls and women. We believe all autistic individuals of all genders deserve to be recognised, valued, accepted and supported in order to realise their full potential. We are committed to shining a light on autistic girls and women through the creation of positive and inclusive experiences for our members and through advocating for the rights of all autistic individuals and celebrating their neurodiversity.

1 This document will use identity-first language based on our community’s preference. We will also use the term ‘girls and women’ as our key focus but also support and represent gender diverse individuals. We are committed to helping people understand the less heard about and understood internalised autistic experience, which is less visible and often found with women, girls and non-binary individuals, but seen in all genders

Yellow Ladybugs runs regular informal social events that offer peer-to-peer connections for autistic girls2 generally between the ages of five and sixteen. Our events bring our members together in an inclusive, fun and sensory-friendly setting. Underpinning every Yellow Ladybugs event, our mission is to foster a sense of belonging for all our autistic girls, to help them connect with their tribe and to instil a sense of autistic pride within our community.
We are also committed to changing the common misconceptions about autism, ensuring autistic girls and women are properly supported according to their needs and building a society that values and empowers all autistic individuals. We actively seek to address the many challenges the community of autistic girls and women face, including barriers to diagnosis, lack of inclusion in school and employment and access to support services.
Yellow Ladybugs is an inclusive organisation, and while we have a particular focus on autistic girls and women, we recognise all genders and welcome trans and gender diverse autistic individuals into our community. As an organisation we do not support the idea of gendered autism or that there is a ‘female presentation’ and we seek to dismantle all stereotypes which are harmful to the autistic community. We know that autistic girls and women, and particularly those with hidden needs, continue to be significantly disadvantaged however and we remain committed to our mission to reduce these issues.

Recommendations

Yellow Ladybugs welcomes the opportunity to participate in the Select Committee Inquiry into Autism and is committed to ensuring that the needs of autistic girls and women are specifically addressed as part of this Inquiry. The recommendations are based on the Terms of Reference. They are informed by our experience and our deep interest in shaping and creating change.

Recommendation 1: Development of a National Autism Strategy that prioritises funding for autistic-led organisations such as Yellow Ladybugs.

Recommendation 2: Select Committee Inquiry to prioritise autistic voices and autistic-led organisations, such as Yellow Ladybugs, throughout the Inquiry.

Terms of Reference: Current approaches and barriers to consistent, timely and best practice autism diagnosis.

2 Yellow Ladybugs also welcomes gender diverse autistic individuals to our events.

Recommendation 3: In accordance with the Select Committee TOR, the ‘misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services’ is addressed as a matter of urgency. We recommend a national approach, similar3 to the Victorian Parliamentary Enquiry which stated: “The Victorian Government ensure that training and professional development be provided to health professionals diagnosing autism in the recognition of how autistic girls present with ASD, including gender specific behaviours and symptoms”.4 RECOMMENDATION 7.1 (Appendix 3)

Discussion

Autistic women and girls currently comprise around one in four autism diagnoses in Australia. Strong anecdotal evidence suggests the actual prevalence of autism amongst women and girls to be considerably higher. Understanding around autistic women and girls forms a relatively new discipline and as recently as the mid-1990s, women and girls were thought to comprise only one in 25 diagnosed autistic people. We need greater understanding on how to recognise the hidden traits autistic girls and women may present in order to ensure they have access to diagnosis.

Misdiagnosis: “I have been under the public mental health system, on and off, since 2001. I have been given multiple mental illness diagnoses, yet none of them ever fit quite accurately. Not once was autism ever suggested - I don’t necessarily see this as blatant discrimination, more a serious lack of awareness as to how autism presents in females.” Anonymous – Submitted to YLB 13/07/20 (Appendix 6)

Yellow Ladybugs recognises the rapidly evolving research, literature and experiences of autistic individuals and wants to highlight that we move along with this and do not support the view that there is a ‘female presentation’ of autism as such, but believe gender and sex biases together with harmful stereotypes may impede timely recognition of autism in females and equitable support and care. We support Lai and Szatmari’s (2019) findings that a holistic approach to understanding the person in the contexts of sex and gender is essential for timely and accurate diagnosis and support.5

In 2016, Yellow Ladybugs was invited by the United Nations Office of the High Commissioner for Human Rights (OHCHR) to contribute to the report on the Health and Human Rights of Autistic girls and women. In compiling this submission (Appendix 10), Yellow Ladybugs obtained input from 1,974 autistic girls and their parents from

Australia, United States of America, Morocco, European Union, Canada, New Zealand, United Kingdom and

Ukraine. From this, only 52% of girls were diagnosed correctly within the first assessment. Lack of professional training could account for 22% of girls requiring a second assessment, 17% of girls needing more than two assessments and 9% of girls are still waiting to be diagnosed. Late or no diagnosis impacts on our ability to access early support.

3 Suggest this is adapted to remove “girls present” and add in the recognition of gender and sex bias and harmful stereotypes. 4 PARLIAMENT OF VICTORIA Family and Community Development Committee Inquiry into services for people with Autism Spectrum Disorder Final Report. 5 Lai, Meng-Chuan & Szatmari, Peter. (2019). Sex and gender impacts on the behavioural presentation and recognition of autism. Current Opinion in Psychiatry. 33. 1. 10.1097/YCO.0000000000000575.

Terms of reference: The interaction between services provided by the Commonwealth, state and local governments for autistic girls and women and gender diverse individuals with a focus on mental health and violence.

Recommendation 4: Improved services to support the Mental Health needs of autistic girls and women. We call for a National Autism Strategy and the subsequent development of properly funded programmes, education and training for providers and services to ensure that the mental health needs of autistic girls and women are met. Specifically, the impacts of inadequate mental healthcare for autistic girls and women in the following areas:

Escalation to suicide, self-harm and severe depression
Discrimination due to autism diagnosis
Insufficient public mental health services and knowledge
Rural access to mental health services and community support
Lack of expertise in autistic girls and women, gender diverse individuals and cross intersectional groups such as LGBTQIA
High costs associated with mental healthcare services
Lack of knowledge on where to get help
Lack of support for autistic mothers

Discussion

We wish to highlight the specific challenges autistic girls and women experience with respect to their mental health and wellbeing (Appendix 12). Autistic girls and women have a higher rate of co-morbid mental health issues which is compounded by mental health professionals having less understanding of the hidden needs of autistic girls and women. New BYU research draws attention to our challenges which showed a strong correlation between how much women with autistic traits camouflage—hide or compensate for autistic qualities to fit in—and the severity of their mental health concerns. Of the 58 women in the study, who all had symptoms of autism, the majority reported frequently masking autistic characteristics. Troublingly, the majority also reported significant psychological distress—including depression (62%), stress (66%) and anxiety (67%)—and 62% reported past or present thoughts of suicide.6

Insufficient public mental health services “We turned up to the Royal Children’s Hospital on a Saturday night with my daughter who is autistic and suffers with depression and anxiety – she was suicidal, and it was life threatening. We had to wait four hours in the busy waiting room, where she was further triggered by the sensory overload. We waited, and then we finally got a bed, but because there was not one single psychiatrist on duty (or available on phone consult) we stayed overnight, and eventually got transferred to another hospital for inpatient stay. It should be MANDATORY that all children’s hospitals have at least one psychiatrist available in person at all times.” Anonymous – Submitted to YLB 12/07/20

6 Beck JS, Lundwall RA, Gabrielsen T, Cox JC, South M. Looking good but feeling bad: “Camouflaging” behaviours and mental health in women with autistic traits. Autism. 2020;24(4):809-821. doi:10.1177/1362361320912147

Intersectional Disadvantage: Autistic girls and women are impacted by their membership of other groups which also experience intersectional disadvantage. Autistic women with mental health issues are experiencing three intersectional disadvantages - being autistic, being female and having co-morbid mental health issues. On top of this, our community of LGBTQIA and gender diverse individuals have yet another layer of disadvantage to overcome. Some of the areas in which intersectional disadvantage is particularly apparent include employment, education, housing, parenting, access to justice and/or legal services and access to healthcare, including mental healthcare. “I believe, perhaps, had I been a male patient in the psychiatric unit, I would have been treated with more respect and/or validation. Autism in males seems to be more accepted and more understood within the health care system. There is very little understanding at all within the mental health system of how differently ASD can present in females - one social worker from the community mental health clinic told me my diagnosis of ASD was seen as ‘controversial’.” (Appendix 6)

Gender Identity: “I was discriminated against for different aspects of my identity. I was recently admitted into a psychiatric hospital for my mental health conditions deteriorating to the point where my life was at risk. I was able to get into the admission fine, but the system had no capacity to input any gender identity other than male or female, any pronouns other than he/him, she/her or any preferred name other than your legal name. All of these things for me therefore were incompatible with the system I was expected to trust my life with, so I think reasonably lead to a lack of willingness on my part to call out other things I found issue with as more barriers would come my way.” Anonymous – Submitted to Yellow Ladybugs 12/07/20

Motherhood: Yellow Ladybugs is aware that Australian autistic mothers are encountering stigma and discrimination. Autistic women require targeted support to combat mental health distress in pre-and post natal support, promotion of parenting capabilities and reduction of professional stigmatisation and discrimination in their roles as mothers. Professionals require targeted training, by autistic people, to help them to provide meaningful support to families.

‘Autistic mothers were more likely to have experienced additional psychiatric conditions, including pre- or post-partum depression, and reported greater difficulties in areas such as multi-tasking, coping with domestic responsibilities and creating social opportunities for their child. They were also more likely to report feeling misunderstood by professionals, and reported greater anxiety, higher rates of selective mutism, and not knowing which details were appropriate to share with professionals. They were also more likely to find motherhood an isolating experience, to worry about others judging their parenting, or feel unable to turn to others for support in parenting. However, despite these challenges, autistic mothers were able to act in the best interest of their child, putting their child’s needs first.’7

“I went to a reputable psych clinic, for assessment of my oldest. They basically diagnosed me with refrigerator mum, told me I’m not implementing recommendations and the children’s developmental delays are a result of my neglect. They called child protection, who’ve now taken my children. I am a good mother, I just feel let

7 Pohl, A.L., Crockford, S.K., Blakemore, M. et al. A comparative study of autistic and non-autistic women’s experience of motherhood. Molecular Autism

down by a system that is not built to support autistic women – I am still fighting this”. 8 Anonymous – Submitted to

YLB 08/07/20

Violence against autistic girls and women is far too prevalent. Autistic women are often the victims of social predators and opportunists. 83% of women with disabilities will be sexually assaulted in their lifetime (Stimpson & Best, 1991). From the 2016 Yellow Ladybugs Survey, female autistic student respondents indicated that 71% had experienced some form of bullying • 48% of autistic girls have been verbally abused • 20% have been physically abused • 12% have had their property damaged.

“I am a 33-year-old autistic woman who has faced violence in many forms throughout my life. Not only am I at greater risk to family violence being a woman, but it worries me that other autistic women like myself experience violence and have so many barriers to getting help. We need programs to keep us safe, that can help teach and protect autistic females about unhealthy relationships, how to identify them, how to recognise abuse and family violence and how to advocate for ourselves. This is the hardest part. Even going through the process and getting involved in reporting it was overwhelming for me. Even going to the police to report family violence is bad, let alone going to court – which is not setup at all to support my needs as an autistic woman.” Anonymous – Submitted to YLB 13/07/20 (Appendix 5)

Comments from the 2016 Yellow Ladybugs Survey are provided below to illustrate some of the serious and distressing impacts of inadequate mental healthcare for autistic girls and women experiencing mental health issues (for more detail on these impacts, refer to Appendix 2).

Escalation to suicide, self-harm and severe depression “Your child has to be deemed on the verge of killing themselves or someone else before you can even get an assessment.” “If your child isn’t trying to commit suicide you can’t access mental health services.” “She has been suicidal and self-harms, suffers from severe anxiety - I have to access private counselling which is expensive.” “It took my child trying to kill herself to access free supportive therapy.”

Discrimination due to autism diagnosis “My daughter was in the mental health service but as soon as she was diagnosed with ASD they discharged her.” “Long waiting lists, also a diagnosis of ADHD seems almost to make MHI (mental health issues) irrelevant…‘it’s because she’s autistic.’” “…were not interested and insisted on discharging her from their services once we received her diagnosis despite still exhibiting auditory and visual hallucinations.”

Insufficient public/government mental health services “They left her unsupported for three whole years following an urgent referral for her mental health.”

Rural access to mental health services and community support “Any services we ‘have access to’ means a two hour drive minimum.” “I pay for a private practitioner five hours from our home.” “In rural areas mental health can be frustrating because of lack of continuity and changing over of staff often.” “Our location is a huge

8 Anonymous, Melbourne, Submitted to Yellow Ladybugs 13/07/2020

limitation to what support we can access. Extensive travel is required. Travel is physically draining on my children.” “She has been in mental health unit for past seven months, but when allowed to go home to our country town there are hardly any services that could help me at all.”

Terms of Reference: International best practice with regards to education

Recommendation 5: In accordance with the Select Committee TOR the interaction between services provided by the Commonwealth, state and local governments, including education for autistic girls needs to be addressed specifically with national consistency in mind. We recommend a national approach, similar9 to the Victorian Parliamentary Enquiry which stated: “The Victorian Government ensure that training and professional development be provided to health professionals diagnosing autism in the recognition of how autistic girls present with ASD, including gender specific behaviours and symptoms”.10 RECOMMENDATION 7.1. (Appendix 3)

Discussion:

Although there are some shared traits, students who are female (or socialised as female/identify as female) may present differently in the classroom, with their difficulties and needs more internalised (Appendix 10) This can result in their needs being missed. Autistic girls may be better at masking their difficulties and are often less noticeably disruptive than their male peers. This is why many girls frequently fly under the radar and many misconceptions currently exist around autistic girls.

The common challenges typically experienced by autistic girls at school do not usually attract funded support, as they are less ‘disruptive’. These include internalising, hidden anxiety, peer relationships, teamwork, completing tasks, executive functioning and class rules.11

The Department of Education and Training Victoria has consulted with autistic organisations such as Yellow Ladybugs to get a better understanding of autistic girls’ needs in education. It would be beneficial to have a national approach to supporting autistic girls at school and we look forward to opportunities to work with each department nation-wide. Multiple resources have been developed, and given the strong autistic voice and true focus from autistic females and gender diverse individuals, are considered best practice.

However, even with this support, there is still a continued need to investigate, invest and further support autistic girls in their education. Issues such as bullying, exclusion, restricted access to education, little to no modifications provided, as girls’ needs are often hidden.

Schools minimizing the extent of need: “Concerns are often dismissed due to my daughter ‘appearing’ to function well (flying under the radar). She is very compliant and mimics other children so appears to be coping.”

9 Suggest this is adapted to remove “girls present” and add in the recognition of gender and sex bias and harmful stereotypes. 10 PARLIAMENT OF VICTORIA Family and Community Development Committee Inquiry into services for people with Autism Spectrum Disorder Final Report. 11 Attwood 2007; Garnett et al 2013 cited in Moyse R 2015.

Lack of preventative support: “I feel that they don’t listen enough, as my daughter is so quiet they just overlook her till she melts down. I feel that because she is also high-functioning they don’t seem to think her being autistic needs a lot of their attention.” Insufficient staffing and budgeting: “It has been difficult getting support, we’ve been told they are understaffed and a lot of IEPs in the classroom. We hope this year is better in introducing different learning styles and providing opportunities for our daughter to LEARN.”

Education: Lack of funded support 34% of respondents felt their daughter needed access to an aide, but were ineligible due to funding requirements, despite an autism diagnosis.

No funding: “My daughter has strong language skills, so missed out on funding. She didn’t get funding for behaviour because she is not outwardly disruptive to other students, but she is imploding internally, not performing to her potential and I am concerned the real impact will not be seen until her teens and adult life.”

“I only wish that when teachers and those in authority noticed these things that they felt were irregularities in what they expected from me that instead of verbally berating me they asked if I needed help or support. I hope teachers now are better able to identify the need for support instead of assuming the student is lazy/careless/frivolous. This resulted in me internalising a strong inner narrative that I was clearly defective in some way or another and my mental health deteriorated greatly, including suicidal ideations. My diagnosis and joining Yellow Ladybugs was the best thing to happen in my life. I have a loving husband and two daughters, and with Yellow Ladybugs I feel I have community. I feel so proud to be me.” Anonymous – Submitted to YLB 13/07/20 – Appendix 8

“After experiencing severe bullying in year 7 my daughter “I am a 17-year-old queer, gender diverse (they/them), transferred to a different secondary school (for year 8) but due autistic, mentally ill (anxiety, depression, PTSD, OCD, to her increasing mental health issues found it difficult to ARFID) and chronically ill (endometriosis, fibromyalgia) make social connections. She therefore withdrew from person. I identify as being disabled. I have certainly mainstream schooling and commenced distance education. battled many barriers in my life and a number of them Prior to doing distance education my daughter was one of the to the extent of discrimination. The areas in which I have found this problematic have been when I have smartest students at school, her NAPLAN results were in the been attempting to access and use services essential top triangles, she received distinctions in the UNSW to me. One of the most notable being that my previous competitive exams and often received academic awards (her mainstream high school was completely unwilling to abbreviated IQ is also in the gifted range). So an intelligent make changes for my access needs to the extent that I student, who was once a top student, isn’t even completing was heavily bullied for various parts of my existence year 10 because of so many barriers.” that challenged the norm as well as my mental health further deteriorated to the point where I could not ANONYMOUS – ON BARRIERS TO EDUCATION (APPENDIX 1) attend school whatsoever. I was forced to drop out of school.”

ANONYMOUS – ON BARRIERS TO EDUCATION

Recommendation 6: In accordance with the Select Committee TOR, the adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people, including better understanding of the hidden needs of autistic girls and in particular women and gender diverse individuals, who often miss out on support and funding due to lack of information and understanding of unique needs.

“I am an autistic woman who has been unemployed for many years. I only just received my diagnosis and know I could get back into the workforce with the right support. I tried to apply for NDIS, but was rejected because they deemed me too ‘high-functioning’ but they don’t see my hidden needs.” Anonymous – Submitted to YLB 03/07/20.

“My discrimination story is trying to get diagnosed with autism in the first place, being subjected to a totally inappropriate ADOS, being told that I ‘just’ have anxiety, social anxiety, depression and executive function deficits but ‘not autism’. No recognition of a female presentation of autism, no recognition of masking, no understanding of how special interests and hyper focus manifest in girls/women. Let alone even looking at the NDIS.” Anonymous – Submitted to YLB 03/07/20.

Recommendation 7: In accordance with the Select Committee TOR, a national approach and investment in the social inclusion and participation of autistic girls and women within the economy and community.

Social Inclusion: “People often treat me harshly because they have high expectations of me (due to how I look/ my gender/ my academic strengths etc.) and they fill the void that exists (due to lack of understanding of me and of autism) with incorrect assumptions about what’s behind my behaviour (laziness/ rudeness/ carelessness/ selfishness). So information is the key. Information that builds everyone’s understanding of the hidden presentation of autism. Information that fills that void, realigns expectations and reduces negative assumptions.” Anonymous – Submitted to YLB 13/07/20

Employment: “A year ago I worked for a mental health organisation and disclosed my autism diagnosis to them. I quickly found that I wasn’t coping with certain aspects of the office environment. When I asked for very reasonable adjustments I was told, and I quote verbatim, “It’s too hard, we can’t do it. This isn’t a safe place for you to work so you won’t be coming back here.” I did submit a complaint with the Equal Opportunity Commission who were actually fantastic. But the ex-employer’s response was that they disagree with everything I have said and they are not interested in attending a hearing should I wish to take this further. I was so broken down at that point, as that whole process had carried on over six months, that I dropped it as I felt so exposed, humiliated and drained……all because I asked if I could sit at a desk in a quiet corner, put a $60 filter over the fluro light above my desk, and work 10-4 instead of 9-5.”Anonymous – Submitted to YLB 13/07/20 (Appendix 7).

“Funding should be given to organisations that support employment specifically for autistic women – I am so sick of getting asked to apply for computer programming jobs, because of the cliché and limited understanding of autism. I would love to get into teaching, beauty therapy or something with animals. We are not all engineers. Our interests are unique, but all existing services cater for male autistics.” Anonymous – Submitted to YLB 09/07/20

“I am an autistic woman, I work as a speech pathologist in a community health organisation and recently requested to return from maternity leave one day per week. After ten years at this organisation they refused my request. I have also previously requested to alter the mix of my work duties - specifically to complete more non-clinical work for our team over face to face duties, as this may enable me to work more hours (due to less exhaustion from maintaining a client interface all day). Any variation to my work duties or role was refused. As a result I will not be returning to the workforce for the foreseeable future. I know I have so much to offer my profession, but I just need flexibility from my workplace regarding working a reduced time fraction and structuring my days so that I see no more than 2-3 face to face clients a day.” Anonymous – Submitted to YLB 13/07/20 (Appendix 8)

Housing: “I think there is a massive, massive need for property managers to have included in their training the awareness of how much power they have when they choose to turn someone away (I just want to advise that I had a flawless rental history, I had never made a single late payment in 20 years of renting, and I had outstanding references, so I wasn’t being turned away for that reason). Property managers should have included in their training, modules on disadvantaged groups and what happens to them when they decide to turn them away over someone who can present ‘well’ (but isn’t necessarily a good tenant!), that favouring ‘mentally healthy’ tenants is what puts a burden on public housing systems. I wish property managers were trained in the needs of a tenant with autism. I wish landlords were more forthcoming when it came to saying ‘yes’ to reasonable requests from autistic tenants, or any disabled tenants.”

Recommendation 8: Investigation and national support to ensure the capacity and sustainability of advocacy, self-advocacy and self-determination supports for autistic girls and women, including mechanisms to self-represent to government as enshrined in the United Nations Convention on the Rights of Persons with Disabilities.

Recommendation 9: Investigation and redevelopment of the family law system to better understand, protect and support autistic mothers. This extends to also understand and support the needs of autistic girls - whose needs are often hidden, ignored and diagnosis questioned.

Discussion

We wish to highlight the need for change in the family law system to better protect and support autistic women and girls. Family law professionals dealing with autistic women or girls should be specifically trained and have experience in understanding us, our particular needs and hidden traits. Family law professionals include solicitors, barristers, report writers, social workers, psychologists and any other professional that has a significant impact or bearing on the outcome.

We hear many stories where diagnosis not believed in court – especially for autistic girls who camouflage or mask and one parent is accused of making up the diagnosis.

“I nearly had my daughter taken off me. I was accused of having Munchausen syndrome by my partner and his lawyers because my daughter’s autism didn’t match their limited stereotypical view. I tried everything for them

to believe me, but the court-appointed psychologist also questioned it, stating she was not autistic – she was ‘too social’ and could look at him in the eyes. This is an absolutely outdated and tragically damaging stance and had huge ramifications for her and me. If she presented as a Sheldon Cooper, or another cliché stereotype, perhaps we wouldn’t have had to go through the ringer. This is why autistic girls are being discriminated against – because of the lack of knowledge in the legal and medical systems – it is failing them.”

Anonymous, Submitted YLB 13/07/20

“If there was more training in autistic females there would be better outcomes for autistic women and autistic girls and less opportunities for various professionals and representatives in court to use autism as a tactic or point score, nor see autism as an in inherent failure in parental capacity. I was left to navigate the judicial system completely on my own because the court, my lawyer, no one had any idea how to accommodate my autism or my daughter’s autism. Disability advocates should have been welcomed throughout the judicial process ensuring judicial fairness, there should have been accessible information on the website and social stories available. A separate secured sensory room, similar to victims of violence at all courts, should have been made available to me and my daughter. There should also be increase funding in legal aid resources for autistic mothers, inclusive of those who fall out of the means test. I wish I had support from an organisation to help me increase my self-advocacy and self-determination, provide guidance and mentorship about the legal process and what I was to expect on the day – so I could have accessed better justice.” Anonymous, Submitted YLB 13/07/20 Autistic woman (See Appendix 5 for complete submission)

APPENDIX 1 Individual Story

Submitted to Yellow Ladybugs on 15/07/2020

My 16 yo daughter is autistic and has severe anxiety and depression (both diagnosed and is on medication). She has experienced significant disadvantage at school and in fact has told her school today that she will be withdrawing and unfortunately won’t be completing secondary school (she’s currently in year 10).

After experiencing severe bullying in year 7 my daughter transferred to a different secondary school (for year 8) but due to her increasing mental health issues found it difficult to make social connections. She therefore withdrew from mainstream schooling and commenced distance education. Prior to doing distance education my daughter was one of the smartest students at school, her NAPLAN results were in the top triangles, she received distinctions in the UNSW competitive exams and often received academic awards (her abbreviated IQ is also in the gifted range). Unfortunately, due to her increased anxiety and depression, her motivation while doing distance education wavered and her work submission was up and down. At the end of year 9 we submitted a request for her to undertake a VCE subject (in the area of her special interest) in year 10 and was told it would be fine as it’s common practice. However, at the commencement of year 10 that request was rejected on the grounds that her work submissions in year 9 were not consistent.

We subsequently appealed and after much advocating, she was allowed to undertake her VCE subject. She completed ALL work submissions in her VCE subject (and had to catch up on approx. 4 weeks of work which she successfully did) and obtained B grades in her first two SACS. However, midway through term 2 (during COVID-19 isolation) she had a mental health breakdown (was admitted to hospital) and we suspended her studies. At the end of term 2 we contacted her school to request a reduced workload for term 3 to help with her recovery but she had one main request which was to continue her VCE subject as she was really enjoying it and was her main motivating factor for continuing her studies (she was also in the process of completing her final SAC from term 2).

The school approved her reduced workload but unfortunately advised she could not continue with her VCE subject.

We subsequently appointed an advocate who advised that under the Disabilities Discrimination Act (1992) the Act makes it unlawful for an education provider to discriminate on the grounds of a student’s disability which they believe the school did as our daughter had met all requirements for her VCE subject, so there were no grounds for not allowing her to continue. However, before this could be finalised, our daughter advised that she felt overwhelmed and not supported by her school (and her anxiety increased once again) so she is now withdrawing from her studies altogether. So, an intelligent student who was once a top student isn’t even completing year 10 because of a decision by the school to not allow her to continue in the only subject that kept her going.

APPENDIX 2 PARLIAMENT OF VICTORIA Family and Community Development Committee Inquiry into services for

people with Autism Spectrum Disorder Final Report

From Page 299 onwards “The Committee recommends that:

RECOMMENDATION 7.1 The Victorian Government ensure that training and professional development be provided to health professionals diagnosing ASD in the recognition of how girls present with ASD, including gender specific behaviours and symptoms. In relation to the schooling of girls with ASD, the Committee is of the view that teachers require a greater awareness and understanding of how girls with ASD present in the classroom and the learning needs of girls with ASD. School environments need to better accommodate the particular learning needs of girls with ASD.

RECOMMENDATION 7.2 The Victorian Government ensure that, as part of their training and professional development in ASD, teachers are provided with specific training to better understand how girls with ASD present, and the learning needs of girls with ASD. Given the evidence it has received, the Committee is of the view that girls and women with ASD benefit greatly from the work of community groups, such as the Yellow Ladybugs, that are focused specifically on their needs. Such groups generally lack funding support, which inhibits the range of support services they can provide. The Committee believes that the Information, Linkages and Capacity Building (ILC) of the NDIS is well suited under its grant scheme to fund community groups such as those created to support girls and women with ASD. Accordingly, the Committee recommends that:

RECOMMENDATION 7.3 The Victorian Government use its position on the COAG Disability Reform Council to advocate for the NDIA to provide grant funding opportunities under its Information, Linkages and Capacity Building program to community groups that specifically offer support programs and activities to girls and women with ASD. The Committee received limited evidence in relation to women with ASD and employment. However, in the evidence it did receive it was clear that the needs of women with ASD do not appear to be being met, either by disability employment services, or potential employers. As outlined in Chapter Five, the Committee believes that, as part of an updated State Autism Plan, an employment strategy for people with ASD will be needed and will include specific provision for the needs of women with ASD. From the evidence received, it is clear to the Committee that there is limited community awareness of the needs of girls and women with ASD. The State Government can enhance community awareness of girls and women with ASD and the issues they face through a community awareness program delivered through an updated State Autism Plan. Accordingly, the Committee recommends that:

RECOMMENDATION 7.4 The Victorian Government, in the updated State Autism Plan, and as part of the community education campaign aimed at raising awareness of ASD, include specific information on ASD in girls and women”

Ref:https://www.parliament.vic.gov.au/file_uploads/FCDC_Report_into_Services_for_people_with_Autism_Spectrum_Disorder_Z5KhPNcW.pdf

APPENDIX 3

Individual story

Submitted to Yellow Ladybugs on 15.07.2020

I am a 17 year old queer, gender diverse (they/them), autistic, mentally ill (anxiety, depression, PTSD, OCD, ARFID) and chronically ill (endometriosis, fibromyalgia) person. I identify as being disabled. I have certainly battled many barriers in my life and a number of them to the extent of discrimination. The areas in which I have found this problematic have been when I have been attempting to access and use services essential to me. One of the most notable being that my previous mainstream high school was completely unwilling to make changes for my access needs to the extent that I was heavily bullied for various parts of my existence that challenged the norm as well as my mental health further deteriorated to the point where I could not attend school whatsoever. I was forced to drop out of that school and eventually make the decision to transfer to a different alternative school which was far easier for me to access, with lower contact hours and far less intensity.

That was very helpful in allowing me to still be able to get formal high school education. Another noticeable time where I was discriminated against for different aspects of my identities was when I was recently admitted into a psychiatric hospital for my mental health conditions deteriorating to the point where my life was at risk. I was able to get into the admission fine, but the system had no capacity to input any gender identity other than male or female, any pronouns other than he/him, she/her or any preferred name other than your legal name. All of these things for me therefore were incompatible with the system I was expected to trust my life with, so I think reasonably lead to a lack of willingness on my part to call out other things I found issue with as more barriers would come my way. Additionally, I found myself overhearing an interaction between a couple of nurses and a patient where they were derogatorily describing a characterisation of someone that they wouldn’t want to interact with. They described them in a variety of mean ways and then a nurse said “well they would definitely be on the spectrum” to which point the other people in the conversation laughed. I interrupted their laughing to question why there was anything wrong with being on the spectrum, to them then tell me that they knew autistic people were all like that. I told them that firstly it was a false characterisation based on derogatory stigmatised assumptions, and that I was autistic and found their conversation very hurtful. I didn’t receive an apology, or them backtracking on what they had said, instead the same nurse who made the comment said to me “I don’t think you’re autistic, do you just think you are or do you actually know?”, I responded that I had gotten a clinical assessment and diagnosis of ASD, to which point she said “ok sure” and then walked off.

This made me feel completely upset and unwelcome in a hospital that I needed to be in for a medical risk caused by my mental health. I also had a number of other issues of misgendering, using incorrect names, having my psychiatrist at the time suggest I would be sexually assaulted because I was a “girl” (firstly a denial of my gender but even if that wasn’t a factor completely unacceptable) if I left hospital. Additionally, as I have a parent who doesn’t believe in mental illness (his words), was in denial about my ASD diagnosis for a while, absolutely ignores my gender identity, name, pronouns and who has caused me to have PTSD, a lot of my struggles have been with him mistreating me because of these things, which off the bat has made it harder to exist in the world at all, let alone being proud of my identity.

So many things need to change, trauma informed care (whereby service providers acknowledge that services can have caused and heightened trauma and act with that knowledge), as well as autism competency training for institutions, queer education for all institutions and just generally more care and willingness to understand me as a person from all facets.

APPENDIX 4

Individual story

Autistic Woman – Experience with Justice. Family Court - the Commonwealth:

I am writing this submission from the lived experience as an autistic mother with an autistic daughter having entered the Family Court system.

The Family Law Act is written in 1975. Back then, little was known about autistic females. Going through Family Court was a demoralising experience. Our knowledge base of autistic females is limited within the Australian society. This is exacerbated in the spheres of fairness and justice within the judicial process. As a female, and an autistic female, and autistic mother during the judicial process, I experienced the process as rigid, inconsistent, not predictable, illogical decisions, parties don’t follow the rules, daunting, confusing, further vulnerability and discrimination. My right, voice, self-determination and advocacy had been removed.

There is no disability liaison at a Family Court. Furthermore, the information on the website is not autistic friendly and thus inaccessible. No staff at the family court or advocacy organisations were able to advise me of my rights as to ‘accommodations’ when taking the stand during a 3-day trial, where I would be cross-examined by barristers in a court room for hours on end. This is a stressful situation enough for an average person who may not have any sensory, auditory or processing issues. You are required to give verbal information and answers. This format is its’ process, in particular the way we are required to ‘present’ and our communication contributes to being judged and determinations about your case is made on this basis. This is not an equalised playing field, for an autistic mother who has been abused by the other party before and throughout the proceedings or does not have access or the same access to economic resource to obtain legal representation or equal access and barriers to information about proceedings to achieve any sense of justice.

Family court consultant - Their keynote report and custody recommendations - heavy influence in the outcome: The day of your consultation you and your child need to change your routine and attend an unfamiliar environment by travelling into the city. This is enough to trigger myself, me as an autistic mother and having to remain calm for my autistic child. The assessment usually take place at the court, in a child-care type setting. They will not come to you. There is no social story available to either myself or my child about the assessment day. There is no visual picture of the settings or picture of who we meet on the day. I was sent a letter to expect to meet a particular consultant, the day of arrival, I met someone else. The practice manager did not inform me of this last-minute change, knowing we were an autistic family when I had called to ask if there was a social story available. I was told there was only a booklet to provide all children. However, this booklet is grossly inadequate, and appears to be formatted for neuro-typical children. I arrive on the day of the family assessment in an already heightened state and this has only served to worsen rather than support us during a stressful process.
The assessment involves the parents and child/ren being interviewed. Then parents are separately observed of how we play with unfamiliar toys with our child and also for the consultant to determine your attachments. Is there a correct way for any parent to play with their children? Are we being observed playing with our child based on being an autistic parent or based on what the report writer thinks play should look like? The assessment by way of interviews, take place are not autistic friendly. As for being an autistic mother, and expert in my child’s life, our advocacy and opinions are removed, being forthright is frowned upon. The questions asked during the interview, is by verbal submission which I was further disadvantaged. The questions seemed standard and read from a laminated sheet that is used for all their interviews - I was not once asked anything specific to my daughter’s autism. And anything extra they wanted to know, “I will ask you”. No specific disability questions, none. My daughter’s autism was NOT a considered a factor in the report and this reflected with inadequate custody recommendations.
Discrimination by report writer: One of the recommendations was to increase the last overnight sleep when “child reaches this ‘particular age’ and she will be deemed independent”. This is grossly discriminatory. There were no specific question/s asked related to my daughters’ autism, in order to formulate context to make a tailored qualitative recommendation - with the ultimate court’s goal - the child’s best interest. Rather, I received a discriminatory recommendation, my autistic daughter will be independent by a certain age (under 10). What does independence look like for any autistic child? And at the age

being recommended? How can a consultant project so far into the future if the therapist she works with disagreed with such statement, on what basis was this age formulated? The consultant had no information about her development, has not read a professional report about her autism, the consultant had access and resources to contact these professionals. Alike, other consultants, have been known to do. There is no consistency in their approach with autistic children or autistic mothers, from the family report writers/assessors during the judicial process and system, all whom work for the Commonwealth. The recommendations are based on consultant’s own experience of autism and a based on their interaction/brief interview of less than 30mins with my daughter. The children’s lawyer tended to follow report writers’ recommendations, as they are viewed as ‘experts’.

Discriminated against as an autistic mother: I have spoken to other autistic women. Anecdotally, autistic women have their children removed from court, more than what we think is occurring. This is a breeding ground to disadvantage autistic mothers. Due to: claims made by the other parent, perception of professionals, no solid risk assessments, subjective interpretation of the legislation, poor standards of evidence and knowledge base of autism. I consider myself lucky. There is stigma in court and assumptions made about you, my autism has been pre-determined based on their experiences of my interaction/s or what they think they know about autism and apply that to your case, although this should be viewed qualitatively. In my case, I was viewed poorly and received disrespectful flippant remarks, as an autistic mother. Such as, “the mother is a rigid parent”. This was viewed as negative. I am not a rigid parent, and which standard is rigid negative? Am I an autistic mother with my own lived experience of how my autistic daughter’s brain my work? Is this not seen as a gift to have a child be guided in her life by her autistic mother? Or my apparent rigid parenting is actually just responding to what my autistic daughter is needing? Other discriminatory remarks were “due to her autism, has made negotiations difficult, her being autistic makes things difficult”. And in “my experience this tends to be the case with people with autism”. Without examples, of how of which I articulated on the day, was concluded about me by the family report writer from a brief 90-minute interview.
Autism poorly misunderstood and stigmatised similarly to having a mental illness: The other party claimed we made up autism, because we present ‘normal’ and invalidates our diagnosis. And having to prove ourselves and how we are impacted. It was also claimed that my autism was a mental illness. Due to this I was required to undertake a further assessment from a forensic psychologist to assess, said mental illness and to evaluate my parental capacity. Although, it was not my parenting in question at that point in time. There are some parties during court proceedings that misconstrue what autism is, as a tactic of point scoring, the system of justice is used to prey on autistic mothers and enabled by poorly trained professionals involved in the judicial process, this means that that autistic mothers are under the microscope due to no fault of her own. This is a breach on human rights.
Lack of training in understanding female presentation of autism - Family report writers: The report noted, ‘the mother asking childcare staff for a visual schedule for the day, although child did not show distress’. How does a report writer determine a level of distress for an autistic girl, as they have a tendency to internalise? And made comment on this within the 6 minutes of meeting us? Some girls may have a processing delay and no immediate behavioural obvious issues. With no knowledge about autistic girls, why assume, interviewing her in a Q&A like fashion, is the best approach? Did you know commonly listed traits in autistic girls, prefer to ‘people please’ and tell you what you think you want to hear? Autistic girls also do not like to perceive a sense of getting anyone in trouble, especially their parent, therefore, she is not going to disclose truthfully what is occurring at home. Therefore, my child is vulnerable and at risk in obtaining justice. This raises questions as to how qualified is an assessor is to decipher from an autistic girl camouflaging vs the crux of the legal issues in question? Furthermore, the intersection between being a female who are more than likely to experience or be exposed to abuse or family violence is further compounded when you are a female with disability. Not all autistic girls are able to identify what is healthy and safety, abusive behaviour. Or be able to express it in a typical or coherent manner. Where safety issues go unchecked during a process that is meant to safeguard us. With this complexity in mind, and non-disclosure influences such custody recommendations, is then gifted wrapped and presented as the child’s ‘wishes’.
Denial of Accommodations for my autistic daughter: The childcare staff on the day of the family assessment did not know what a visual schedule was. Even after my explanation. My self-agency was removed because they ‘knew better’, she seemed fine to them. This resulted in my child being denied a reasonable accommodation, within her rights, within a building, on a day that is meant to provide justice. The next day resulted in her lashing out in therapy, hiding under a table, absconding from session, and could not ask her what

game she would like to play, as she interpreted this negatively and as us “trying to get information from her”. Her experience at court has disrupted and destabilised the therapeutic relationship she has with her therapists. The court assessment was traumatising and distressing for her. On the day, she ‘kept it together, and she did not show signs of distress’, according to the report writer. It may have been more suitable to interview autistic girls in a familiar environment.

Lack of Access to the court: There are no sensory free rooms at any court. Given the extreme stress endured, there is no room available to be free from the sensory insults. You are also expected when the judge is in session, you sit very close to people and having to sit very still. So, any self-regulatory behaviour is not socially acceptable whilst court is in session. I had to suppress myself.
Professionals involved in the judicial process are poorly trained and qualified: The family court report writer work from the court, one is allocated to you by luck of the draw. Only after the report is written up you are privy to their training and or qualifications. For instance. the writer we got was a social worker. A worker who has no formal training in autism. A social worker assessing a neuro-divergent family. The family court do not have government resources to allocate autistic individuals with more suitability trained and qualified assessors to achieve fairness for vulnerable families. Furthermore, my understanding is, there is no follow up to see what was settled on between the parents and how close it aligned with the report writer’s recommendations. There is no feedback loop to the writers. What is the evidence base behind separated autistic families? What reflective practices is being utilised or encouraged by the government employing report writers, whom have their own codes of practices? Judges, again, a mixture of results. Some are willing to listen to the parent. Some not so much. Not all judges have a family legislative background and no formal training in ASD. Autism tends to be generalised to any person who says they have autism.
The independent children’s lawyer [“ICL”] - representing autistic child’s best interest: At times, a children’ lawyer is appointed to represent an autistic child and is in their best interest. The autistic mother who is the matter subject expert and with her lived experience is removed, voiceless as to what she feels is to occur in her daughter’s life. This is extremely concerning when the children’s lawyer has no specialised training in ASD or for girls with autism - who then go on to represent the child during the judicial process - they have a strong influence in the outcome of the proceedings. Similarly, to the family court report writers, there are variable experiences with how ICL’s approach representing judicial fairness for the client - my autistic child nor there is no follow up to see how the outcome has impacted their autistic client. In my experience, the children’s lawyer, had not obtained any professional reports despite being in the system for some time. Discussions that took place were, “by the time she is older and in school, by that age…. she be right” type of attitude. Whereas, other ICL’s obtain documents from the very beginning. How can an ICL advocate for an autistic child in the family court system if they are missing information and not trained? How can, what they believe about autism be value free? How is justice achieved for my autistic daughter in this respect?
Legal aid Victoria: The compliance section of Victorian Legal aid confirm they do not have any specific stream of children lawyers or lawyers that specialise in autism or girls with autism that I could be referred too. - whom you are allocated too is luck of the draw. Autistic mothers do not have the same economic resources for legal representation and having to go through Legal aid lawyers who often are time poor and not able to thoroughly explain the many questions an autistic mother will have. These autistic mothers are carers and are already under constant stress due to their parental responsibilities and now put within the legal system without support. Some autistic mothers, whilst still vulnerable, miss out on legal aid funding because they have employment, but their vulnerabilities still remain, and need to self-represent and thus, their rights to equal representation is infringed upon.

Relationship with Legal representation: Your relationship with your lawyer, is very important and crucial that you understand each other. But how often do they come across an autistic mother? You need to put so much trust in them that they will do the right thing. As an autistic mother, I did not recognise when I was being taken advantage of and mistreated. Because they were “my lawyer” and my voice in the judicial process, they must care about my interests, right? In my case, my representative jeopardised my case and in aim to close this case. I had to have a supportive friend to sit in with my meetings to help me communicate what I needed. She too found my representative condescending for asking the simplest of questions. There was a strong power dynamic over me. I often felt during the proceedings, suppressed and misunderstood and discriminated against from all corners. Another important issue of concern is the ‘day of court’. Court system is unpredictable, you never can predict an outcome. The day of court often leads to social exhaustion before lunch time and having to ‘step outside’ to negotiate with the other party and or their representative. This means you HAVE to listen, process this information and think very quickly, there is NO TIME to process what is being often, no time to ask questions and consider consequences. I needed that time to process, this was not available to me. I was often pressured and bullied into agreements. This is not judicial fairness. If there was an advocate, I should think time to process be fair on autistic mothers.

As there is no autistic liaison at court no one could guide or mentor me about the ‘unwritten hidden rules and protocols’ and what to expect on the day of court, socially acceptable dress codes and the important things like needing to bow to the judge upon entering the court room. On the outset, I am faking it until you make it. This is not the legal representative place to do so.

How I felt: Shockingly, my case is considered lucky. The legalisation or process isn’t designed to protect the vulnerable but work against you. If there was more training in autistic females there would be better outcomes for autistic women and autistic girls and less opportunities for various professionals and representatives to use autism as a tactic or point score, nor see autism as an in inherent failure in parental capacity. I was left to navigate the judicial system completely on my own because the court, my lawyer no one had any idea how to accommodate my autism or my daughter’s autism. Throughout this, I still had to be strong and my daughter’s advocate ensuring she was not treated like a cookie cutter, because she was, despite her being represented. There is no information about accommodations, it does not appear it is a ‘thing’, how can I think to even ask for our needs to be met, or even if there an existence of such policy or an accommodation when there is no information available, or by virtue of “this is how court goes”, “this is how it happens for all of us” and everyone is treated with the same standards. Would this be the same as someone in a wheelchair? Us autistic mothers are invisible. We are measured against neuro-typical standards, alongside being a female, and the person sitting behind a desk has little knowledge about us. My daughter’s autism was not a considered factor to achieve judicial fairness for her. There are numerous inconsistencies within the judicial processes and reflected in poor outcomes, which I am one of many.

Recommendations:

Training for all professionals. lawyers, report writers, judges, forensic psychologist and single expert witnesses;
Disability advocates being welcomed throughout the judicial process ensuring judicial fairness;
Accessible information on the website and social stories available. And a time allowed to look through the facilities on a separate occasion;
Family report writers able to come to the autistic child, uniformity in approach to formulate recommendations. ie. mandatory that they ring their therapist and different interview questions tailored to autism to make improved recommendations in best interest of the child.
Allocated separated streams for those with autism;
Funding for children’s lawyers specialise in autism and rights of children and parents with disability;
Funding for specialised trained report writers in autism, particularly autistic girls and
Autistic liaison in all courts;
A separate secured sensory room similar to victims of violence at all courts,
Increase funding in legal aid resources for autistic mothers, inclusive of those who fall out of the means test.
Some organisation for autistic information to help self-representatives, increase their self-advocacy and self-determination, provide guidance and mentorship about the legal process and the day thus accessing justice.

APPENDIX 6

Individual story

Submitted to Yellow Ladybugs 13/07/2020 - Anonymous

I feel that I have been discriminated against multiple times over the past 20 years at least. I have been under the public mental health system, on and off, since 2001. I have been given multiple mental illness diagnoses, yet none of them ever fit quite accurately. Not once was autism ever suggested - I don’t necessarily see this as blatant discrimination, more a serious lack of awareness as to how autism presents in females. I have suffered a lot over the past 25 years with mental health issues and was constantly told I needed to try harder to help myself, to put the strategies into place. I was constantly made to feel it was my fault that I was not improving in my functioning level and emotional regulation/severe anxiety, etc.

More recently, I experienced discrimination when trying to seek a referral to have an ASD assessment as a 41-year-old adult woman. One GP stared at me in confusion and said she didn’t know where to send me as I wasn’t a child; another GP laughed and told me I was clutching at straws and mentally ill; a public psychiatrist shrugged and said I might be autistic but it wasn’t his area, and it wasn’t important. Each time I left in tears and felt very invalidated and alone. I did eventually find a very good GP who is very knowledgeable about the presentation of ASD in females - she picked it up in my presentation from the first few minutes of me being in her office. Last month I was admitted to the local psychiatric unit for a short stay due to reaching a very low point; grieving from such a late ASD diagnosis, personal stressors, dealing with PMDD, and ending up suicidal. I had reached burnout point. I was honest with the psychiatric registrar/Dr’s in there about my recent diagnosis of autism, level 2. His response was to look confused and dismiss it, even after I explained I had actually gone through an intense formal diagnosis assessment with a highly regarded clinical psychologist, and this diagnosis had also been confirmed by a private consultant psychiatrist. (Incidentally, the consultant psychiatrist is actually the head of the mental health clinic, so is kind of like the boss of the Dr’s who dismissed my diagnosis in the psychiatric unit). During my time in there, I was struggling with symptoms of shutdown/regression, meaning that I was struggling to speak, move fast enough, eat or drink. The nursing staff in there became very frustrated with me as I assume they felt I was being difficult? I honestly don’t know. I genuinely was silently screaming inside my head “Come on, C!” as I couldn’t get the words out fast enough to respond to their questions or move fast enough when they told me the Dr wanted to see me, and they were getting annoyed. One nurse screamed my name down the corridor as I wasn’t coming fast enough from my room for her liking. Another nurse got angry when I wasn’t able to eat or drink, implying that I was doing it on purpose (I have an eating disorder history). I ended up having a huge anxiety attack in the lunch room, which was very embarrassing, and all staff simply ignored me. The only one to offer any assistance was the lovely lunch man (PCA). I had repeatedly requested an antidepressant, to which the Dr replied, “There is no medication for autism”, effectively contradicting his earlier dismissal of my ASD, and also using this diagnosis against me. Just because I am autistic does not mean I cannot be depressed, just like any other human being? I felt very discriminated against and powerless. I ended up discharging myself after 48hr as I felt like the staff were all annoyed with me, weren’t understanding my symptoms at all, and I was getting more and more desperate/suicidal. They knew how suicidal I was and they let me leave regardless.

The reason I have outlined my experience above is because I believe, perhaps, had I been a male patient in the psychiatric unit, I would have been treated with more respect and/or validation. Autism in males seems to be more accepted and more understood within the health care system. There is very little understanding at all within the mental health system of how differently ASD can present in females - one social worker from the community mental health clinic told me my diagnosis of ASD was seen as ‘controversial’. Even my discharge summary letter from the psychiatric unit implies that I am fixated on the diagnosis, to the point where my supposed grief is written in quotation marks, and the registrar wrote “There are no significant pointers of ASD seen in the patient”, and ASD is not listed under their diagnoses of me. This shows a complete lack of awareness and understanding of autism in females, as I was actually more ‘overtly autistic’ in there purely because I was in shutdown/unable to mask/selectively mute/severely socially anxious, etc. It is also highly disrespectful to the two highly regarded private clinicians who took me through the very intense ASD assessment earlier this year.

I am currently in the process of making a formal complaint about my experience in the psychiatric unit, with my clinical psychologist backing me all the way. I am very scared to do this, but I keep thinking there are so many other females out there who are at risk of experiencing this kind of treatment too (given that mental health issues are common for girls on the spectrum) and it truly isn’t fair. I came very close to acting on my suicidal ideation after discharging myself from the psychiatric unit, purely because of the way the staff

were treating me in there when I was already in a fragile state emotionally. It is very hard to sit in a room of three or four health professionals, mostly men, and find the courage to express your feelings and to be honest about a late diagnosis of autism, level 2, when you are already very anxious and distressed. To then have them react as though they didn’t believe me, or that they felt it was incorrect, or that it wasn’t important in regards to my mental health was so disheartening. It is hard enough to come to terms with a late diagnosis of ASD at the age of 41yr, let alone to then have it invalidated or dismissed by the very health professionals who are meant to help when you are already at rock bottom point mentally.

I am sorry this is quite long. I just feel that I am not alone in this experience, and that perhaps, collectively, if more of us speak out, maybe health professionals might eventually sit up and listen. I have stated in my letter of complaint that further training about the presentation of ASD in females needs to be given to all staff working in healthcare, so that other females who are already struggling mentally don’t have to experience the invalidation and discrimination that I (and many others) have experienced. Thank you for reading my story.

APPENDIX 7

Individual story

Submitted to Yellow Ladybugs 13/07/2020 - Anonymous

I have written stories about 2 occasions, one in employment and one in housing, where I was let down by the system. It really is impossible to make it short. My struggles can’t be condensed down to a single quote or paragraph, but I still did cut the stories very, very short, just so you know.

Employment: I’m going to cut a very long and convoluted story short, so keep in mind this is not the entire picture. A year ago I worked for a mental health organisation and disclosed my autism diagnosis to them. I quickly found that I wasn’t coping with certain aspects of the office environment. When I asked for very reasonable adjustments I was told, and I quote verbatim, “It’s too hard, we can’t do it. This isn’t a safe place for you to work so you won’t be coming back here.”

I have already communicated to them what they could do better during that whole process, but it fell on deaf ears. I had suggested they do some autism training through a local organisation which would educate them on how to be an autism friendly employer and they could get official acknowledgement of that and use it to promote themselves as such (as long as they applied the things they had learned). They couldn’t have been less interested and actually ignored the email I sent them. Throughout the process of me asking for adjustments, they kept telling me they were having meeting upon meeting about me, involving the General Manager, and higher-level supervisors and HR….but I was never involved in the meetings. I had no say in any of the process and the end decision which resulted in my job loss (and I am still unemployed a year later). They could’ve not pretended to be autism friendly, or even mental illness friendly, to begin with and lure me in by me trusting them and making myself vulnerable to them. They used their power to make a very big decision about me which had a very big impact on my life from which I am still suffering the consequences one year on.

I did submit a complaint with the Equal Opportunity Commission who were actually fantastic. But the ex-employer’s response was that they disagree with everything I have said and they are not interested in attending a hearing should I wish to take this further. I was so broken down at that point, as that whole process had carried on over 6 months, that I dropped it as I felt so exposed, humiliated and drained……all because I asked if I could sit at a desk in a quiet corner, put a $60 filter over the fluoro light above my desk, and work 10 4 instead of 9-5.

Housing: 2 years ago I found myself in an unstable housing situation for 9 months. This caused me to have a huge increase in severe meltdowns, severe and prolonged anxiety, and dissociation as I moved house five times (and I mean a whole house of furniture and belongings, requiring a truck each time).

Being at the mercy of property manager after property manager, having them decide my fate, whether I was worthy enough to get a roof over my head or not; me excruciatingly aware of how mentally ill I appeared to others as I could no longer hide it, knowing this would affect my presentation and ability to gain rental housing. And it did.

Eventually, after the 4th property I was in had far too much exposure to noise, commotion, lack of privacy and neighbours who told me outright they didn’t want me there, I contacted Housing SA as I had been on their priority waiting list for about 2 years. I had contacted them several times during that year with no reply. I had contacted my social worker earlier in the year seeing if she would advocate for me to Housing SA. She took 5 months to reply to my email. So finally I decided to commit the undignifying act of grovelling to them yet again. I was in a severely mentally ill state and wrote a very vulnerable and pleading email to them, begging for housing and explaining what my meltdowns looked like (a very private thing, but I needed someone to know how bad I was and how badly I needed a stable and suitable home). I received no reply. I followed up about 2 months later asking why I had not received a reply, and I received no reply to that either. About 6 months after that I got a standard letter from Housing SA advising me that if I wish to keep my place on the priority list it was time for a review where I would need letters from doctors explaining my situation. I threw the letter in the bin as I felt so degraded by the whole process. I am still processing residual trauma from that period in my life.

There are so many intersections in the housing story (which has been very condensed) at which someone could’ve done something better. There was such a long chain of people whose mercy I was at who could’ve made a huge difference in things not progressing to getting as bad as they got had they made a different decision about me, or had just responded to me reaching out in desperation.

I had actually, in hindsight rather naively, told a couple of property managers that I was autistic and that I really needed this specific place as it suited my needs regarding my disability. I was treated with what I can only describe as ‘disgust at my entitlement’. They assumed I felt entitled to priority over other applicants because I disclosed my disability and they said as much to me.

I think there is a massive, massive need for property managers to have included in their training the awareness of how much power they have when they choose to turn someone away (I just want to advise that I had a flawless rental history, I had never made a single late payment in 20 years of renting, and I had outstanding references, so I wasn’t being turned away for that reason). Property managers should have included in their training, modules on disadvantaged groups and what happens to them when they decide to turn them away over someone who can present ‘well’ (but isn’t necessarily a good tenant!), that favouring ‘mentally healthy’ tenants is what puts a burden on public housing systems. I wish property managers were trained in the needs of a tenant with autism. I wish landlords were more forthcoming when it came to saying ‘yes’ to reasonable requests from autistic tenants, or any disabled tenants. I wish private rentals were more disability friendly in general. Not everyone with a disability can gain public housing, so some will need to be in private rentals for their entire life. Why should I have to forfeit all of my needs because I am in private rental? A person employed full-time will always win over an applicant with a disability. I want property managers, and landlords, to consider what flow on effects that has (people with disability in substandard housing or homeless or in unstable accommodation), and that they are the ones who single-handedly have the power to change that with informed decision making.

APPENDIX 8

Individual story

Submitted to Yellow Ladybugs 13/07/2020 - Anonymous

I am Autistic with comorbid diagnoses of Anxiety and Depression. I’m 34 years old and was diagnosed Autistic 4 months ago- after it became apparent my eldest daughter is Autistic. She is three years old, and I have another one-year-old daughter who I believe may also be Autistic.

WORK

I work as a speech pathologist in a community health organisation and recently requested to return from maternity leave one day per week (as I couldn’t find appropriate care for my daughters more than one day a week, and I could psychologically only manage one day per week). After ten years at this organisation they refused my request.

I have also previously requested to alter the mix of my work duties - specifically to complete more non-clinical work for our team over face to face duties, as this may enable me to work more hours (due to less exhaustion from maintaining a client interface all day). Any variation to my work duties or role was refused. As I result I will not be returning to the workforce for the foreseeable future. I know I have so much to offer my profession, but I just need flexibility from my workplace regarding working a reduced time fraction and structuring my days so that I see no more than 2-3 face to face clients a day.

PARENTING

In regards to parenting, I feel very isolated and unable to participate in many of my local supports for parents

I found it difficult to participate in my new parents group due to the large number of people in the group (10) meaning I experienced difficulty with conversation in the group format. I also have difficulty with larger groups of parents and kids coming into my home. A group of 4 would have suited me, or maybe once a month structured sessions led by a facilitator for the first year of my daughter’s life would have helped.
I desperately need support and respite but struggle to receive it from family/friends due to looking “normal”. The expectations placed on me by in-laws are high due to my difficulties being invisible, and my inability to meet these expectations leads to animosity against me. My requests for support are often not met because others feel I dictate how I want to be supported and don’t show appreciation in the right ways. I request visitors don’t drop in unannounced - that I have warning. I sometimes ask people to be a bit quieter when they are here because I get sensory overload. I don’t come to evening gatherings with my children. I sometimes stay home and let my husband take the kids places. I say no to offers of tickets to kids’ concerts.

All this has been met with animosity, passive aggressive behaviour and put downs and I have needed regular psychology sessions to help deal with the problematic relationship. I really wish there was understanding and support from my in laws and extended family, and flexibility to do things differently so that myself and my daughters can best participate in family gatherings.

SCHOOL

As a high performing student I was often heavily penalised for errors or instances of poor performance. I was often verbally berated by teachers and people in authority, with the assumption being that I was careless/lazy/frivolous (when in actual fact I was trying my bloody heart out at everything).

Examples:

I was verbally berated by a teacher at the end of year 10 for being “scattered” and told I will need to “try harder” for year 11 and 12 (despite consistent top marks). The interaction left me in tears and I left for school holidays with no further support.
I was stripped of volleyball captaincy in year twelve for being late for a bus on one occasion, and verbally berated as “careless” by my coach. I was benched for entire games and told I needed to demonstrate more leadership. (My teammates actually all seemed to quite like me, but my coach struggled with my personality)
I was verbally berated by the dean of my residential college in first year uni and threatened to have my scholarship removed because 23

my poor academic performance (B+ average). I was accused of partying too much (I never partied, but battled with severe depression and anxiety during my time there).

All this resulted in me internalising a strong inner narrative that I was clearly defective in some way or another and my mental health deteriorated greatly, including suicidal ideations. I only wish that when teachers and those in authority noticed these things that they felt were irregularities in what they expected from me that instead of verbally berating me they asked if I needed help or support. I hope teachers now are better able to identify the need for support instead of assuming the student is lazy/careless/frivolous. My diagnosis and joining Yellow Ladybugs was the best thing to happen in my life. I have a loving husband and two daughters, and with Yellow Ladybugs I feel I have community. I feel so proud to be me.

APPENDIX 9 Report on Remote Learning Due to COVID

Yellow Ladybugs is pleased to make the following submission on the experiences of autistic girls at schools in Victoria, during remote and flexible learning in response to the COVID-19 pandemic. This submission is based on 57 responses received from the Yellow Ladybugs members who were invited to share their experiences of remote learning for autistic girls. The Yellow Ladybugs community has maintained an open dialogue on this topic following the return to school, and this feedback has also been collated for the purposes of this submission.

SUMMARY

Yellow Ladybugs notes that the remote and flexible learning experience brought both positive and negative outcomes for autistic girls. While some autistic girls thrived in the online learning environment, many others struggled.

76% of survey responses were mostly negative. A number of respondents commented that remote learning has highlighted the lack of specialised support their child receives in the classroom. The experience put a spotlight on the extent to which the current education system is failing autistic girls, particularly those with hidden needs, who are being disadvantaged both academically, and in terms of their wellbeing and engagement.
24% of responses were mostly positive. The key theme was that some autistic girls experienced less social anxiety and sensory overwhelm in not having to deal with classroom pressures. Someparents observed that they have been asking for a more flexible home-based approach to education for their child for many years, and had always been told this was not possible. The remote learning experience has demonstrated that this type of schooling option is feasible and should be made available going forward.

RECOMMENDATIONS

We welcome the review into remote and flexible learning. As an autistic-led organisation, with a specific mission in supporting autistic girls, and a strong track-record in collaborating with the Department of Education and Training Victoria, we are calling for a dedicated Roundtable discussion on students with disabilities, and are available to participate in this, and any ongoing discussions.
Remote and flexible learning has highlighted the fact that there is no one-size-fits-all approach when it comes to supporting autistic girls at school. It has confirmed the need for a more flexible and individual needs-based approach, where autistic girls are given the opportunity to learn in the environment and style that works best for them.
Further work is needed on reviewing the unique needs and challenges of autistic girls, in particular their hidden needs such as executive functioning challenges and anxiety. This work needs to occur under the umbrella of a finalised State Autism Education Strategy.
All autistic girls, whether they have PSD funding or not, need access to additional supports, and specifically, Individual Education Plans. Schools need to be providing families and autistic students with more consistent information about what adjustments and supports can be provided.
Further investigation is required into understanding why this approach has worked so well for some students, and how more flexible education options can be provided in the future

KEY BENEFITS OF REMOTE AND FLEXIBLE LEARNING FOR AUTISTIC GIRLS

Reduced anxiety in dealing with social issues within the classroom
Freedom to address sensory needs and movement breaks as required
Less noise, less sensory overwhelm resulting in more learning time
Less pressure around daily executive functioning tasks, such as getting dressed, getting to school on time.
Some autistic girls expressed relief that there is no bullying at home, no playground or friendship issues to deal with.
For some autistic girls, the true benefit of remote learning was that they received continual 1-to- 1 support.

Case Study: K was in mainstream public school until Grade 3. We then moved her to a Catholic school because the support she would receive with an aide. When K started high school at the beginning of 2020, she began to experience disengagement, self-harm, mental health concerns, school refusal and bullying. She was placed in a psychiatric ward for one week and was taken out of

school. The shift to remote learning has been a positive experience for her, and an eye-opener for me as her parent. Learning from home has allowed K to relax. She has less anxiety and is more physically comfortable without sensory overload. She is able to learn without needing to wear her ‘mask’ and is more engaged as a result. I’ve seen her learn and do more work in the past four weeks then she did in the past four years! I believe that more opportunities like this need to exist for the autistic girls, who attend mainstream school, but don’t get the support they need, because they fly under the radar. This experience has proved that we need to rethink how we deliver education for those autistic girls for whom neither physical school attendance, nor traditional home schooling, meet their particular needs. I think there is an amazing opportunity for autistic girls like K to have their education needs delivered through a group learning program via the distance education platform but where they maintain social connection through autistic-led organisations like Yellow Ladybugs.

KEY CONCERNS WITH REMOTE LEARNING FOR AUTISTIC GIRLS

Learning and Academic Challenges

Not getting direct and immediate feedback from the teacher
The requirement for constant supervision not possible for working parents
Video-conferencing challenging for autistic girls with slow processing speed (distracting and difficult to navigate)
Executive function challenges included being overwhelmed with the list of tasks every day and not knowing where to start, and being unable to do work independently, struggling with the lack of structure and routine
Access to the internet was a distraction - not understanding that online classroom is not a social media chat room, or difference between private and public spaces within the home
Needing full time supervision to do any learning from home
Students with PSD funding receiving no additional support from integration aides
The large volume of tasks was not directed at individual learning needs, with no adjustments offered to the curriculum
Students exhausted by being required to sit for hours at the computer
The large amount of work expected, and the lack of instruction was overwhelming, especially for autistic girls with executive functioning challenges and who need extra time to process information
Frustrations with technology which was also hard for parents to navigate
Students who are rigid or literal thinkers had trouble keeping on task
Autistic girls with a Pathological Demand Avoidance profile found it almost impossible to cope with the expectations and demands placed on them by this style of teaching

Mental Health and Wellbeing

Many families struggled to manage the competing needs of multiple children, especially when more than one of their children are autistic
Escape from classroom bullying was replaced with risk of increased cyberbullying
Many autistic children need to maintain a clear separation between school and home. Remote learning blurred this line, and meant home was no longer their safe place where they can recover from school
Negative impact on family relationships, as the line between parent and teacher became blurred
Anxiety - not knowing when this is going to end and things are going to go back to ‘normal’
Lack of welfare checks from schools and teachers
Difficult for neurodivergent families to support their children. Many parents, especially those who are autistic themselves experienced burnout, and received no additional support. The mental health strain on some parents and carers was significant

Being isolated at home meant some autistic girls struggled with the lack of connection and loss of rapport with trusted teachers/aides and friends. Some parents observed their children withdrawing.
Many autistic girls experiencing ongoing disengagement with school. Concern about how they are faring now, as prolonged social isolation has caused them to lose already fragile friendships and social connections.
Experiencing a return of separation anxiety and school refusal, sometimes from students who have not experienced school refusal before

APPENDIX 10 Health and Human Rights of Autistic Women and Autistic Girls

World Health Organisation (WHO) Submission

Australia, 5th November 2016 In response to the invitation by WHO, Yellow Ladybugs welcomes the opportunity to contribute our insights into the Health and Human Rights of Autistic Women and autistic girls. Yellow Ladybugs, a non-government organisation with strong bridges to the community, is dedicated to the happiness, success and celebration of autistic girls and women. Our mission is to protect their rights to experience a fulfilled live through the realisation of their full potential. Yellow Ladybugs do this by raising acceptance and awareness both in the autism community and the broader community of the female presentation of autism in the education, employment, medical sectors. Yellow Ladybugs are renown for creating positive and inclusive experiences for autistic girls and women and seek every opportunity to advocate for their rights. In compiling this submission, Yellow Ladybugs obtained input from 1,974 autistic girls and, their parents from Australia, United States of America, Morocco, European Union, Canada, New Zealand, United Kingdom and Ukraine. The survey respondents were predominantly parents and carers with some input from girls. We provide direct quotes from our community to give them a voice after a history, and indeed present, of under representation against gross discrimination and stigmatisation. Responses from October 2006 through online survey. Key highlights from our survey shows that 71% of girls are victims of sexual and physical assaults, verbal bullying, social exclusion and having their property damaged at school. Against bullying, only 20% of girls have had access to their autistic female peer group and 67% of parents are accessing a Yellow Ladybugs social event or wish their child to access our programs. 51% of girls have had no access to early intervention support with 48% of girls having repeated, and costly, re-assessments to find professionals that understand how autistic girls presents. 55% of girls, and their parents, have not had access to the community in the last month.

Figure 1 Length of Delay in Diagnosis for Girls Discrimination and Inequality in Healthcare Studies have shown that parents of autistic children notice a developmental problem before their child’s first birthday (reference http://www.cdc.gov/ncbddd/autism/data.html). 47% of girls are diagnosed within one year of their parent first raising concerns with their GP or pediatrician. 24% of girls wait between one and two years, 19% wait 2-5 years and 10% wait more than 5 years.

Research has shown that a diagnosis of autism at age 2 can be reliable, valid, and stable with the medium age of diagnosis of Autism Spectrum Condition being 3 years and 4 months and Asperger Syndrome of 6 years and 2 months (reference http://www.cdc.gov/ncbddd/autism/data.html). 10% of autistic girls receive a diagnosis before the age of 3, 34% aged 3-5yrs, 17% aged 9-12yrs, 6% aged 13-18 yrs. with 11% still waiting to have their disability recognized. Factors impacting on more timely diagnosis for autistic girls include:

Lack of professional training on feminine presentation of autism “No one felt that she was ASD because she didn’t line things up, showed empathy & had eye contact”
Delay to observe child development progress “Practitioners felt that she was so high functioning that there was a good chance she would ‘grow out it’.”, “Kept saying she’s young she will catch up”
Blaming parents “No one would listen. Blamed it on my mental health.” And “The first paediatrician we saw thought there was nothing wrong. Neurotic mother syndrome!”
Misdiagnosis
Treatment of co-occurring conditions “My daughter developed an eating disorder that had to focus on for about 6 months before we could pursue the ASD diagnosis”
Rural access to services “Waiting lists for speech pathology, occupational therapy and rural access to psychologist”
Internalised, quieter presentation “Because she lacked problem behaviours” 52% of girls are diagnosed correctly with one assessment. Lack of professional training has 22% of girls requiring a second assessment, 17% of girls had more than two assessments and 9% of girls are still waiting to be diagnosed. Late or no diagnosis impacts on girl’s ability to access early intervention programs. 51% of girls had no access and 49% did have access. Families are incurring expenses in seeking appropriate diagnostic support for their child. 24% had no cost, 6% paid under $250, 15% paid between $250 $500, 21% paid $600-$1,000, 19% paid over $1,000 and 16% paid over $2,000. The diagnostic process and cost implications has ramifications on autistic girls and their families. Impacts include:
Housing “ended up selling our house, almost lost our car”, “our home is currently for sale to pay the debts that have accumulated.”, “We have almost lost our home because of the money we’ve spent”
Debt accumulation “all costs went onto the credit card and its just part of the monthly interest I pay to this day”, “Extreme hardship but necessary. I took out a high interest loan and did not tell my husband”
Planning for old age “Withdrew superannuation to cover the cost”
Contribution to reduced mental health and access to services “Financial strain also mental & emotional stress”, “Means I cannot see my own psychologist”
Emotional stress on autistic girls “More impact on my daughter as she is fearful of being under constant analysis to such an extent that she screamed once as I was trying to drag her into an appointment “THERES NOTHING WRONG WITH ME!!!!”, “I had to work extra days at work even though this affects my daughter who has separation anxiety but it had to be done.”
Future family planning “We delayed having additional children”
Reduction in quality family time “No holidays for 4 years” 27

Layered Vulnerabilities and Economic Disadvantage

Consideration of the degree of vulnerability experienced by autistic girls, by systemic and community failures to meet their autistic needs, on the family unit. 82% of Autistic children are growing up in two adult households where 33% of parents share the same neurology as their child, diagnosed or self-identifying as autistic. 37% of children are growing up with parents that report their own mental health to be fair to poor with physical health a difficulty for 29% of parents. As girls struggle in education, health systems and a sense of social belonging, at home they are prone to economic disadvantage. 50% of parents are not in full or part time employment with systemic failures proving a barrier. Factors in unemployment;

When a girl is failed in education: “I need to be available if the school needs me”, “We are in deep financial debt. I had to give up work for the past 3 years to become a full-time carer to help see my daughter through school.”
When school is not accessible: “I gave up work to home school my daughter”.
When mental health support does not meet her needs “I am currently unemployed due to the emotional needs of my daughter and the emotional toll it takes on me”.
When employers are not flexible to the needs of her carers: “to start my own business with flexible hours to meet the needs of my autistic children”.
When a girl cannot access before and after school care: “I am not working by choice to manage therapies and appointments, getting her to school and caring for her as she would not cope well in out of school care.” Economic disadvantage can be a barrier to girls accessing fee paying healthcare, reduces their ability to be diagnosed and receive appropriate levels of mental health support to manage co-occurring conditions including social anxiety, depression and eating disorders. Financial ramifications on the family unit are discussed in section ‘discrimination and inequality in healthcare’.

Accessible Communities

55% of parents have been unable to access their communities in the past month. Factors of community participation;

Judgement of general community “Behaviour and others judgment can make us feel unable or reluctant to access community activities”.
Access to peer group “We automatically have community within our home, four of five of us are autistic. We have many autistic friends and families we spend time with”.
External carer support “I delay any shopping trips until my daughter is not with me as she can’t cope”
Autism friendly environments “We pace our outings and go to autism friendly places a lot”.
Service provision against life balance “my daughter is sick of going to see specialists in allied health. and this appointment fatigue contributes to my daughter’s resistance to us engaging in asd social support”.
Social media platforms “there is always internet community” and “mum always has online support”
Economic hardship Medical professionals should ensure their offices have had an autism friendly sensory audit to be accessible for autistic patients. 31% of girls are able to access their doctors without distress, 56% require loving support from a parent and carer to help them cope and manage with the environment, 12% of girls experience an overwhelming assault to their senses resulting in a meltdown or shutdown and 1% of girls access a doctor home visiting service.

There is a need for medical professionals to be trained on how to engage with an autistic girl in her communication style and help her interpret her feelings of being unwell. 5% of girls are nonverbal, 1% use assistive communication devices, 24% of girls have their parents communicate their health needs, 19% of girl’s experience mutism in doctors’ offices from being overwhelmed and 51% of girls can communicate their needs to health professionals.

Figure 2 Girls Communicating Health Concerns

Restricted Access to Education

18% of parents have been unable to access education for their daughter, due to suspension, exclusion or being sent home. 39% having to change schools, due to their daughter’s needs not being met.

Safety concerns: “She is now homeschooled as they ‘couldn’t guarantee her safety’ and would only allow her to attend an hour a day”.
Home Schooling: “I was often called to pick her up from school. She is currently on homebound (home schooling) due to her anxiety. The school does nothing to help her.”
School Refusal: My daughter has school refusal and the school has not helped build a connection. I’m not sure she’ll go back to school”
Absconding: “My daughter is only attending school for half days. This comes after a term of multiple calls each week to pick her up early due to her extreme distress, repeated absconding, physical attacks on teaching staff”
Suspended for meltdowns: “There’s been many suspensions, due to meltdowns or shutdowns” 28

Education: Curriculum not modified

44% of parents believe that the current teaching styles did not match their daughter’s learning style. This is compounded by 51% of parents feeling that their concerns were not listened to by the school. This supports the 52% rating, parents gave to schools, as to well their daughter’s needs were being accommodated overall at school.

Schools minimalizing the extent of need: “Concerns are often dismissed due to my daughter “appearing” to function well (flying under the radar) She is very compliant and mimics other children so appears to be coping”.
Lack of preventative support: “I feel that they don’t listen enough, as my daughter is so quiet they just overlook her till she melts down, I feel that because she is also high functioning they don’t seem to think her being autistic needs allot of their attention”

Figure 3 Teaching and Learning Styles • Insufficient Staffing and Budgeting: “It has been difficult getting support, we’ve been told they are

understaffed and a lot of IEPs in the classroom. We hope this year is better, in introducing different learning styles and providing opportunities for our daughter to LEARN”.

Education: Lack of funded support 34% of respondents felt their daughter needed access to an aide, but were ineligible due to funding requirements, despite an autism diagnosis.

No funding: “My daughter has strong language skills, so missed out on funding. She didn’t get funding for behavior, because she is not outwardly disruptive to other students, but she is imploding internally, not performing to her potential, and I am concerned the real impact will not be seen until her teens and adult life.”

In a study of autistic girls in mainstream primary schools, four key areas were identified as creating difficulties: class rules; working collaboratively; completing tasks; and other interactions with peers (Moyse R 2015). Furthermore, Attwood advises girls have issues such as executive functioning, difficulty in beginning and completing tasks on time, slower processing speeds, along with rigid and inflexible thinking (Attwood 2007; Garnett et al 2013 cited in Moyse R 2015). These factors are not taken into consideration, when applications are assessed for classroom aides in Victoria, Australia at mainstream schools.

Limited access to support: “The principal listens but they struggle because she needs an aide for organisation and she isn’t eligible”
Lack of Training: “Her school aide is NOT trained for girls with asd so I don’t feel she really understands how to handle her”
Not understanding the female presentation: “They pretend to listen. Being a female and presenting in a very different way to boys, a lot of her challenges are masked and hidden as she deals with this internally”.
Girls and Parents Not Listened to: “They won’t listen re anxiety at home, when I ask for more supports they say “but she’s fine at school”. When I explain she’s madly compensating they don’t believe me”

Figure 4 Access to aide Autistic Girls Sense of Belonging, Friendship and Bullying

16% of girls have no sense of belonging at school, 31% have a bit, 26% have some, 21% have a lot and 76% have a tremendous sense of belonging. The tremendous amount of belonging must be viewed alongside both the rates of bullying and friendships of girls. 30% have no friends at school and 70% do have friends. However, only 29% of autistic girls have not experienced bullying. Yellow Ladybugs asked this as a multiple answer question. 48% of girls have been verbally abused, 20% have been physically abused, 12% have had their property damaged and 52% have been socially excluded.

Sexual abuse at school:” She has also been touched inappropriately by boys and has been unable to defend herself”, “Sexual harassment”, “Sexual abuse”, “Pants have been pulled down”, “sexually harassed.”
Social Naivety Results in Abuse Not Recognised: “She would not correlate kids being mean to her - she just thinks that’s how kids play.”, “Thankfully she doesn’t yet recognise that the other children are talking inappropriately to her so she’s not distressed”, “She can’t tell when they are mean to her. They try to get her to do things and say ugly things to her.”, Figure 5 Autistic Girls Bullied at School “Several children bully her. She is just beginning to understand that they aren’t good friends”, “She will call children her friends even while they’re shouting abuse at her. If she does realise they’re bullying (usually when it gets physical) she will make up stories about the children’s lives to excuse their behaviour”
Social Exclusion:” She has been excluded from parties and other events by children she considered to be her friend.”
Teacher’s as the bullies: “A teacher was removed after being witnessed harassing her in the hallway”, “She has also been teased for her meltdowns being told that she was always over reacts and makes such a drama of the smallest things”, “her previous teachers have said she has “wilfully refused” to do certain tasks, just because she couldn’t understand and/or has never been able to do the tasks.”, “Bullying from her teacher has been a major problem which has led to us removing her from the school and we are now home-schooling”, “bullying from a certain teacher to continue to make fun of her in front of the class which is then continued by some of the kids out of class.”, “The bullying was really from teachers. They dropped her on her head, sent her home on the bus with no pants on, lost her communication device, damaged or lost her iPads multiple times, ignored her in class, yelled at her, isolated her, etc.”
Discrimination based on disability: “Kids laughing at her for not speaking”, “Other kids (mostly other girls) recognised and exploited my daughters naivety / gullibility, generosity.”, “Making fun off her arm steaming, toe walking, other children thinking she is contagious”, “she has been called dumb and stupid as she does

not get the jokes or sarcasm”, “On occasion, her need for sensory input has upset another child who did not appreciate her sensory seeking and has lashed out, bitten etc.”, “She has been bullied about her anxiety (which often presents as mutism).”

Physical Assaults: “Harassing, being choked, verbally abused.”, “During a recent to session to explore the roots of new self-harming it was discovered that the harm had originated from a peer that pinched and twisted her skin (resulting in small sores) to stop her from talking when they sat together this then progressed into a self-harming habit to control behaviours”, “Had stitches on her face from rocks being thrown at her“
Verbal abuse: “Name calling… being accosted in the playground when she left a game because they weren’t playing fairly. Told she can’t play for whatever reason”, “She had a magic necklace which was a talisman for the confidence she needed to get through the day. She was mocked by her classmates”
Friends as bullies: “Not bulling, just excluded by a so-called best friend”, “Sometimes things happen to her from her friends that she doesn’t understand.”
Social media bullying: “She has been bullied verbally and via social media”, “the boys have posted sexual explicit comments on social media during school time which resulted in their suspension”, “she was threatened online after complimenting another girl that she wanted to be friends with, the other girl mistook it for sarcasm and they started an online abuse campaign against her”
Girls Victimised for being Victims: “I got suspended when I was the victim of bullying”
Reporting Mechanism: “was targeted by bullies as she wouldn’t tell anyone what happened”, “school turn a blind eye”” The school did NOTHING to stop it.”, “She has been a little bullied, but the schools have been on top of it.”, “It was well tolerated by the staff.”, “The response from the school varied according to the teacher. Mostly ineffectual.”

Girls must be able to identify when abuse is occurring, how to report the abuse and be able to escalate their concerns. 30% of parents are unsure if their child can report a problem, 15% of girls cannot, 43% of girls can tell a teacher and only 12% of girls know how to escalate their report of abuse if it is not listened to, actioned.

Girls Autistic Peer Community

80% of girls have not had access to their autistic female peer group. Yellow Ladybugs holds events for autistic girls, themed like birthday parties, for autistic girls to find their peer group and acceptance. 10% of respondents have accessed a Yellow Ladybugs event with 57% wishing to access our events, 9% of girls cannot access events and 24% have access to some support. Positive autistic female role models, 15% could name at least one, 51% do not know any and for 34% they would not understand what a role model is.

Our Recommendations for Investment, Accountability, Equality and Non-Discrimination

Access to before and after school provisions with staff trained in autism
Increased carer provisions for employers
Parents access to opportunities for their emotional resilience to increase workforce participation
Diagnostic challenges to be addressed to alleviate the need for second, third and fourth costly assessments
Professionals including teachers, medical staff and mental health workers to be trained on feminine expression of autism
Medical offices to have an autism sensory audit to reduce barriers to access health services
Doctors to have training on how to engage with autistic girls to help them be independent in self-reporting health concerns
Nonverbal girls must be given access to communication assistive devices
Girls to have access to opportunities to engage with other autistic girls
Understanding training for student peers to accept diversity as a natural component of life
No tolerance policy on bullying with recognition of all forms including physical, verbal, property damage and social exclusion
Access to gender specific social groups
Self-advocacy training
Online safety training and online moderated platforms for connecting girls

Conclusion

Autistic girls are encountering discrimination, poverty, mental health distress, education failures and social exclusion against professional’s lack of training to identify them in a timely manner. Their failures impact on girls by not accessing early intervention support alongside their autistic male peers. Children’s comments, and within some parental description of their child’s behaviours, is girls expressing “therapy fatigue” with one child referring to her therapy as “abusive”. Yellow Ladybugs does not advocate for a normalisation agenda for autistic girls, supports must be meaningful to the child and allow her space to follow her own trajectory. Autism is not to be eliminated or hidden, autism is what our girls will grow into as they age. The onus is on homes, schools, professionals and the community to allow her to grow into a confident woman, self-assured in her own identity, as an autistic female, without internalised self-oppression. Therapy sessions should not replace her right to be a child, and engage in her interests, indeed, those interests when nurtured may become her employment expertise. The wider community must take inclusion from ideal ology to practice in both building design, communication and social engagement. Autistic girls have a low-level sense of belonging, where bullying is their normal experience and accessing the community and health services leaves them ‘coping and managing’ or completely overwhelmed their voices are silenced in mutism, meltdowns and shutdowns. Autistic girls must be given their voices to grow into empowered women who can self-advocate in their own health, report when a victim and have the capabilities to advocate within systems for their needs to be recognised. For far too many girls, this is not their current reality. Autistic girls are having the stability of their home life compromised with higher levels of unemployment, higher levels of parents physical and mental difficulties and high levels of debt accumulated through parents fighting against systemic misunderstanding and poor provisioning for their children.

Thank you for considering the needs of autistic girls and women. We believe there is a real and concerning lack of funding for user led advocacy and support groups

specifically developed for autistic women and girls, such as Yellow Ladybugs. These funding gaps compound the challenges outlined above, as we are limited in our

ability to directly assist in areas that can help our community. We would like more transparency with existing funding provided to larger autism organisations to ensure

accountability and better input in how to support autistic girls and women and their rights.

APPENDIX 11 Quote: Amanda Buckland - Psychologist

Submitted to Yellow Ladybugs 16/07/2020

Internalised Autism (in women, girls and other genders).

“I am passionate about helping people understand the less visible, Internalised Autistic experience, which is often associated with women, girls and non-binary individuals, but seen in all genders. Contrary to stereotypes about Autism, many Autistic individuals are highly empathetic, relational, and social, but may socialise and communicate in different ways to the non-Neurodivergent (or ‘Neurotypical’) population. Many Autistic individuals have become experts on camouflaging or “masking”, (often unconsciously), to fit in. Growing numbers of adults are either late-diagnosed or self-identify after one or more children undergo assessment for possible Autism or ADHD or after an episode of burnout or mental health crisis. Many report a lifetime feeling different and misunderstood. They may excel at some things and struggle others without knowing why. Many find themselves misdiagnosed, or receive diagnoses and treatment for co-occurring mental health conditions, without underlying Autism being identified or accommodated. As a Psychologist, I have supported many young people and their families to navigate through these complex situations ”.

I am autistic, and because I am high masking, when I finally tell someone ‘I’m stressed’ or ‘overwhelmed’, I mean I am at absolute breaking point. I need help. I need to stop. I can’t do it any longer. Unfortunately, because my external expression and body language tends to be inconsistent with my real emotions, I tend not to be taken seriously. People sometimes think I’m joking, being sarcastic, or only mildly stressed, so they push me to try harder. Keep going. Try new strategies. But inside I’m dying.

If an autistic individual tells you they are overwhelmed, listen. Act. Take it seriously. The overwhelm is likely to be 100 times worse than you think. Remember this and you could save a life. Ort the very least, help someone from the brink of breakdown.

APPENDIX 12 Mental Health Symposium – Melbourne

https://www.youtube.com/watch?v=xy3c4SReQT0&t=2432s

Submission 49 — Yellow Ladybugs — Select Committee on Autism

Autistic Girls and Women – Yellow Ladybugs Submission

Table of Contents

About Yellow Ladybugs………………………………………………………………..Page 1

Yellow Ladybugs Submission: Select Committee on Autism

Introduction

About Yellow Ladybugs

Recommendations

Discussion

Australia, United States of America, Morocco, European Union, Canada, New Zealand, United Kingdom and

Discussion

YLB 08/07/20

ANONYMOUS – ON BARRIERS TO EDUCATION

Discussion

Anonymous, Submitted YLB 13/07/20

APPENDIX 1

Individual Story

APPENDIX 2

PARLIAMENT OF VICTORIA Family and Community Development Committee Inquiry into services for

people with Autism Spectrum Disorder Final Report

APPENDIX 3

APPENDIX 4

APPENDIX 6

APPENDIX 7

APPENDIX 8

WORK

PARENTING

SCHOOL

APPENDIX 9

Report on Remote Learning Due to COVID

SUMMARY

RECOMMENDATIONS

KEY BENEFITS OF REMOTE AND FLEXIBLE LEARNING FOR AUTISTIC GIRLS

KEY CONCERNS WITH REMOTE LEARNING FOR AUTISTIC GIRLS

Learning and Academic Challenges

Mental Health and Wellbeing

Social Connection and Disengagement

APPENDIX 10

Health and Human Rights of Autistic Women and Autistic Girls

World Health Organisation (WHO) Submission

Layered Vulnerabilities and Economic Disadvantage

Accessible Communities

Figure 2 Girls Communicating Health Concerns

Restricted Access to Education

Girls Autistic Peer Community

Our Recommendations for Investment, Accountability, Equality and Non-Discrimination

Conclusion

APPENDIX 11

Quote: Amanda Buckland - Psychologist

APPENDIX 12

Mental Health Symposium – Melbourne