Introduction 2
Key Areas for Change 3
- An autistic girl, a double disadvantage 3 Terms of Reference 3
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Misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services 3
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Current approaches and barriers to consistent, timely and best practice autism diagnosis 3
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International best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity 3
Recommendations 6
- Barriers to inclusion in mainstream education for girls with ASD Terms of Reference 6
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The interaction between services provided by the Commonwealth, state and local governments, including: ii health and mental health ii education 6
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The social inclusion and participation of autistic people within the economy and community 6
Barrier 1: Lack of consultation 8
Barrier 2: Lack of reasonable adjustments 9 Barrier 3: Lack of knowledge 10 Barrier 4: Lack of inclusion 11
Recommendations 11
- Mismanaged transitions and avoidable trauma 12 Terms of Reference 12
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The social and economic cost of failing to provide adequate and appropriate support services, including to support key life stage transitions of autistic people 12
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The adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people, including: iii the ability of the NDIS to support autistic people with complex needs 12
Recommendations 14
Conclusion 14
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Introduction
May I begin by thanking the committee for this Inquiry and note, I would welcome the opportunity to present this submission in person.
I am the mother of a 13 year old girl with autism spectrum disorder (ASD)1 . I do not represent an organisation, or group, or body. I represent the high social and economic price our daughter and family have paid, and continue to pay, for well known systemic barriers for autistic girls in the Education State.
1 Interchangeable descriptors are used to honour the many ways autistic persons might choose to be described including: girls with autism, girls on the autism spectrum, autistic girls and girls with Autism Spectrum Disorder (ASD).
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This submission will highlight 3 key areas:
- An autistic girl, a double disadvantage
- Barriers to inclusion in mainstream education for girls with ASD
- Mismanaged transitions and avoidable trauma Each area will be underpinned by the relevant terms of reference, evidence-based research, my daughter’s and family’s personal experience and will include recommendations for how the issues can be addressed.
The aim of sharing our story is to champion change for all autistic girls and to secure a future where timely diagnosis, early intervention and equitable educational outcomes are secured to mitigate the impacts of this life long disability.
Key Areas for Change
- An autistic girl, a double disadvantage
Terms of Reference
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Misdiagnosis and under representation of females in autism data, and gender bias in autism assessment and support services
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Current approaches and barriers to consistent, timely and best practice autism diagnosis
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International best practice with regards to diagnosis, support services and education, effectiveness, cost and required intensity
Recent surveys suggest that girls2 , on average, are diagnosed much later than boys and this is most certainly true for our daughter. Despite consistent engagement with health professionals for more than decade (for behaviours of concern) she missed out on a timely diagnosis. Like so many girls with ASD, she flew under the radar and did not receive her diagnosis of autism spectrum disorder until 11 years of age.
2 Yellow Ladybugs 2016. Submission to United Nations Office of the High Commissioner for Human Rights, November 2016. Available at https://www.yellowladybugs.com.au/Advocacy
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In autism data there is an under representation of girls which can be attributed to:
- the nuances of the female presentation of autism
- current gender biases in screening and diagnostic tools3 Failing to diagnose these girls early places them at a huge disadvantage because they are missing out on best practice for autism. It is widely accepted that 15-20 hours per week of EIBI (Early Intensive Behavioural Intervention)4 for autistic children before the age of 4 years is key to improving developmental trajectories over their lifetime by allowing them to be as independent as possible and participate to their full potential in education, employment and their community.5
Our daughter missed the opportunity of EIBI and this has forced her to compensate in maladaptive ways (e.g obsessive compulsive disorder) for her ‘hidden disability’. This has had profound negative effects on her self-esteem, sense of identity, ability to participate in community, mental health and our family’s ability to function. Retrospectively, I see the barriers to timely diagnosis were:
- she is without intellectual disability
- she did not have a language delay
- current diagnostic tools do not identify girls as readily as boys
- she works hard to ‘mask’ her symptoms6 3 Loomes R et al 2017. What is the Male-to-Girls/women Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis. J Am Acad Child Adolesc Psychiatry, vol 26, no, 6, pp. 466-474; Dworzynski K et al 2012. How different are girls and boys above and below the diagnostic threshold for autism spectrum disorders?, Journal of the American Academy of Child & Adolescent Psychiatry, vol. 51, no. 8, 2012, pp. 788-797; Rivet T and Matson J 2011. Review of gender differences in core symptomatology in autism spectrum disorders, Research in Autism Spectrum Disorders, vol. 5, no. 3, pp. 957–976; Lai, M., et al 2015. Sex/gender differences and autism: Setting the scene for future research. Journal of the American Academy of Child and Adolescent Psychiatry, vol. 54, no, 1, pp. 11-24, available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284309/ 4 Wood, S., Christian, M.P. and Sampson, A. (2018), Audit of outcomes following a community-based early intensive behaviour intervention program for children with autism in Australia. Aust J Psychol, 70: 217-224. doi:10.1111/ajpy.12193 5 Prior M et al 2011. A review of the research to identify the most effective models of practice in early intervention of children with autism spectrum disorders. Australian Government Department of Families, Housing, Community Services and Indigenous Affairs, Australia.
6 See for example, Kirkovski M et al 2013. A review of the role of girls/women gender in AUTISM. Journal of autism and developmental disorders, vol. 43, no. 11, pp.2584-603; Dworzynski K et al 2012. How different are girls and boys above and below the diagnostic threshold for autism spectrum disorders?,
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At 2.5 years our daughter received a diagnosis of Sensory Processing Disorder. When I asked for a more complete diagnostic assessment at 3 years old, I was told to wait until she was 7 years old. When I asked for further assessments at 7 years of age, I was told it was not required and we should focus on her handwriting via a block of occupational therapy which we did. (It is worth noting here that issues with handwriting may serve as a red flag for girls with ASD7 ).
Just how low our daughter needed to go before triggering a diagnostic assessment at age 10 years was when, for a period of more than 6 months, she experienced debilitating symptoms that significantly impaired her ability to function for the most part of everyday. These symptoms included:
- insomnia
- extreme anxiety
- behaviours of concern such as aggressive outbursts
- social difficulties
- panic attacks
- obsessive compulsive traits
- intrusive thoughts
- sudden drop in academic performance What we have since learned is, these escalating behaviours of concern were symptomatic of her autism. Autism explained her inability to cope with the increased academic demands and social complexities of upper primary school. Autism also explained her long standing rigidity causing strong resistance to change or even the thought of change. Diagnostic assessment uncovered previously unknown social and pragmatic communication deficits. Put this all together with the looming prospect of high school and life simply became intolerable for our daughter and for our family. She
Journal of the American Academy of Child & Adolescent Psychiatry, vol. 51, no. 8, pp. 788- 797; Rivet T and Matson J 2011, Review of gender differences in core symptomatology in autism spectrum disorders, Research in Autism Spectrum Disorders, vol. 5, no. 3, pp. 957–976; Van Wijngaarden-Cremers PJ et al
- Gender and age differences in the core triad of impairments in autism spectrum disorders: a systematic review and meta-analysis. Journal of Autism and Developmental Disorders, vol 44, no, 3, pp.627-35; Victorian Parliament 2017. Inquiry into Services for People with Autism Spectrum Disorder
Final Report. Family and Community Development Committee. June 2017. Available at
https://www.parliament.vic.gov.au/fcdc/article/2588. 7 Asperger’s and Girls: World-Renowned Experts Join Those with Asperger’s Syndrome to Resolve Issues
That Girls and Women Face Every Day! By: Tony Attwood (Editor), Temple Grandin (Editor)
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didn’t sleep, which meant we didn’t sleep. She would not let anyone else care for her which meant we never received any respite. She could not tolerate social gatherings which meant we slowly became isolated from our community without even realising it was happening. Following an effort that spanned a decade, we could no longer keep up the appearance of functioning well.
Because our daughter is pro-social and academically able, her autism has been described as mild. And mild it may seem, when she is ‘presenting/performing’ for others outside our home in an epic effort to ‘fit in’ and say what she thinks is expected of her to say. But this effort comes at a cost and truth be known, for the majority of days in our family there is very little that feels mild about it.
Recommendations
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Funding allocated to design appropriate diagnostic tools for autistic girls
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Health and early education professionals are supported with resources and professional development opportunities to assist in the identification and support of girls with ASD
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Information for parents about the female presentation of autism is developed and added to the Raising Children Network website’s section on autism
- Barriers to inclusion in mainstream education for girls with ASD
Terms of Reference
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The interaction between services provided by the Commonwealth, state and local governments, including: ii health and mental health ii education
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The social inclusion and participation of autistic people within the economy and community
When our daughter received her diagnosis of autism aged 11 years, her health team led by our Paediatrician, assured us the diagnosis would enable school staff to provide a more inclusive environment. This was certainly the case throughout her remaining time in primary school and her Principal writes:
I highly recommend (child) as an excellent student. We have worked closely with both family and specialists to support her. I would strongly suggest this continue
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as we note that with support she can succeed academically, socially and
available on request) emotionally.(evidence
The 2017 Victorian Parliamentary Inquiry8 highlighted mainstream schools were not commonly providing an inclusive model of education for children with ASD. Part of the subsequent $22.4 million Victorian Government response was to support children with ASD in the school system and aimed to:
- build the capacity of teachers and school staff to better understand and support girls with ASD through the release of resources to support staff in all Victorian schools9 .
The above goal should have positively impacted on our daughter but instead, the enrolment process, orientation and transition into her first year of secondary education in an all girls public school was marked by failure on the school’s part to deliver inclusion processes as stated by the Department of Education10 . Our experience demonstrates how senior staff lack knowledge to interpret and carry out recommendations by both the Department of Education and health teams. It also highlights how a lack of supportive practices have devastating and irreversible negative impacts.
Barrier 1: Lack of consultation
Our local girl’s high school received detailed information about our daughter’s diagnosis including test results, reports and recommendations within the required time frame. During my initial phone contact with the school to discuss suitability, I asked specifically ‘when does consultation happen?’ I was informed by the Deputy Principal “we will not talk to you until your daughter’s enrolment has been processed”.
10 The principal, or their delegate, will meet with you and your child to talk about what type of adjustments will best meet your child’s needs. This is called consultation. To make sure your child has the same learning opportunities as children without disability, an education provider must make reasonable adjustments.
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Part of the enrolment process was an upcoming entrance test. I explained that in test situations my daughter’s processing difficulties and anxiety got in the way of her academic capabilities and asked “what supports could be put in place to adjust for these?” I was informed adjustments would not be necessary as the results did not influence the way the girls were placed into classes. Our daughter sat the exam without any adjustments for her challenges which I believe disadvantaged her significantly given what transpired.
Soon after, we received a letter informing our daughter she had been placed into the minority language group (which was not her preference). For context, the school separates students into a majority language group (7 classes) and a minority language group (2 classes). The minority group in which my daughter was placed did not include 1 of her 7 friends from primary school.
I pushed for a meeting to learn more about how these decisions were made in the absence of consultation. My daughter was in the room with me when I asked the “was the school aware of her diagnosis before they made the decision to separate her from her friends?”and“what assistance is offered for her transition?” the response from the school Pyschologist, directed to my child, was:
We can do nothing for you. This is high school and you need to learn that you will be 1 of 800 girls here and you do not get everything you want in life. We have a very good transition program and we transition all our girls the same,
available on request) they don’t need anything other than what we offer11.(evidence
This hostile encounter caused our already anxious child extreme levels of distress and once home she screamed at me through tears “you told me they would help me with my diagnosis not make it harder for me”. And I had, how little did I know.
Barrier 2: Lack of reasonable adjustments12
Following decisions and omissions by the school, my daughter experienced severe panic attacks, was subsequently unable to leave the house and started to verbalise
11 A complaint was lodged with the Department of Education, the Psychologist denied making these statements and the Principal accepted her account. No-one sought clarification from the third person in the room that day - my daughter. 12 To make sure your child has the same learning opportunities as children without disability, an education provider must make reasonable adjustments. https://www.education.vic.gov.au/parents/additional-needs/Pages/disability-adjustments.aspx
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suicidal ideation13 . Alone, I attended the school to try and salvage the situation by pursuing reasonable adjustments with the Deputy. I asked could our daughter:
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meet the minority language teacher? “No”
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see the minority class in action? “No”
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move into the majority language class with her friends? “No”
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have at least one friend in her class? “No”
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opt not to do a language? “No - what would we do with her?” The Deputy offered one adjustment:
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extra time for our child to hand in assignments This in absolutely no way reflected our child’s needs. Our daughter is a highly conscientious and organised student who has consistently achieved above expected results on her primary school reports with a B grade average. Without consultation, the school was completely incapable of knowing what reasonable adjustments would be beneficial for our child. The decisions were also completely opposed to ‘recommendations to the school’ by our Developmental Paediatrician, one of which states:
Particular consideration should be given to needs relating to building and sustaining confidence, emotional regulation skills and social skills difficulties.
(evidence available on request)
The simplest way of interpreting this recommendation and supporting our child would have been to work with her preferences and place her with at least one friend.
Barrier 3: Lack of knowledge
The inability of senior school staff to interpret the above recommendation highlights that a lack of knowledge persists and is consistent with what was exposed by the 2017 Victorian Parliamentary Inquiry14 . When I addressed the disadvantage of removing an
13 The term ‘suicidal ideation’ refers to thoughts that life isn’t worth living, ranging in intensity from fleeting thoughts through to concrete, well thought-out plans for killing oneself, or a complete preoccupation with self-destruction. https://headspace.org.au/assets/download-cards/suicidal-ideation-mythbusterv2.pdf 14 https://www.parliament.vic.gov.au/fileuploads/FCDCReportintoServicesforpeoplewithAutismSpectrumDisorderZ5KhPNcW.pdf
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already at risk child from her friends and not working with her preferences the written response from the Principal was:
I have read through the information you have sent to the school. There is no
available on reference to (your child) needing to do a certain language.(evidence request)
Something that failed to register with the Principal is that this is not about a ‘certain language’. It is about equitable educational outcomes for a child with special needs. It is about providing individualised support for the disadvantages my child needs to overcome every single day before she even steps foot into the school setting. Why actively disadvantage her further by treating her the same?
Barrier 4: Lack of inclusion
The Australian Bureau of Statistics shows 86% of autistic students face “difficulty” at school15 . Following the above interactions with the school to this point, our daughter’s health team called an urgent meeting with us and advised “it is our strongest recommendation that you find another high school”. It was clear to all involved our daughter would have difficulty in this school.
We sought assistance from the Department of Education to help with alternate options and were dismissed in writing “sorry you have changed your mind about the suitability of the school, when you make a decision about a school, I am sure they will provide available on request).you with a suitable transition experience”(evidence
Highly stressed, anxious and running out of time (the month was December) we approached several bordering public high schools (where our daughter had friends) and were told they were unable to consider our application because we were out of the geographic area and we were redirected back to our local school.
Inclusion in education is often considered in terms of changing the education system to fit the needs of the student, rather than attempting to change the student to fit the school. Our local girls’ high school makes no such attempts and their message is clear
- inclusion does not happen here. 15Varney,C 2015,‘Education system failing students with autism ’The Age, 7April, 2015 https://www.smh.com.au/opinion/education-system-failing-students-with-autism-20150406-1mezfn.html
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*At the time of writing The Department of Education has been unresponsive to us and our several written attempts using their formal complaints process channels(evidence available on request).
Recommendations
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The Department of Education mandates public high schools provide consultation, reasonable adjustments and inclusion for autistic girls
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Parents have the right to recourse through the Department of Education when barriers to inclusion are experienced
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Primary school staff are part of the consultation and transition process for autistic girls entering high school.
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Staff in girls high schools are prioritised for professional development about the female presentation of ASD16
- Mismanaged transitions and avoidable trauma
Terms of Reference
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The social and economic cost of failing to provide adequate and appropriate support services, including to support key life stage transitions of autistic people
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The adequacy and efficacy of the National Disability Insurance Scheme (NDIS) for autistic people, including: iii the ability of the NDIS to support autistic people with complex needs
My autistic daughter’s mismanaged transition through a key life stage is not unique and sadly, the social and economic cost of failing to provide support to her through this is irreversible. The systematic review Broken bridges - new school transitions for students with autism spectrum disorder17 reports:
16 Danuta Balhak-Paterson is an expert in the field and provides a service for autistic girls https://www.uniqueupsychology.com.au/ and is able to provide Professional Development for school staff (permission to cite obtained).
17 Nuske, Heather & McGhee Hassrick, Elizabeth & Bronstein, Briana & Hauptman, Lindsay & Aponte, Courtney & Levato, Lynne & Stahmer, Aubyn & Mandell, David & Mundy, Peter & Kasari, Connie & Smith, Tristram. (2018). Broken bridges—new school transitions for students with autism spectrum disorder: A systematic review on difficulties and strategies for success. Autism. 23. 136236131875452. 10.1177/1362361318754529.
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Children transitioning to secondary school faced additional challenges with their mental health, sensory, behavioral and adaptive functioning, academics, peer relations and social skills, engagement in transition and orientation, and transportation challenges in their new schools, which disrupted their adjustment and learning.
We experienced our own broken bridge before our child even got a chance to begin her secondary schooling. The combined experience of a) significantly rising anxiety with b) significantly reduced support triggered a rapid deterioration in our daughter’s already fragile mental health. Not only did she experience exclusion because of the high school’s decisions and omissions, she also experienced rejection by her peers. Soon after she communicated that she would no longer be going to this high school as planned, her friends were no longer accepting of her and stopped communicating with her both in person and online. She was not invited to her Grade 6 graduation party. We were officially in crisis.
The insomnia returned, so did worsening panic attacks. Obsessive compulsive disorder took hold. Her aggression escalated which jeopardised the safety of our family and for the first time emergency services were called to our daughter who really wanted to kill herself. She had become a mental health emergency and was taken to hospital in an ambulance with a police escort. Our daughter was seen by CAMHS (Child and Adolescent Health Service) and referred to a Psychiatrist. The wait was 12 weeks. We were unable to leave her side. In a matter of mere months our daughter had progressed from a diagnosis of mild autism to be known as a complex case.
Our daughter exhibits frequent and intense behaviours of concern (aggression, disruption, inappropriate vocalisation and absconding) and is unable to attend school. As is often the case in Psychiatry, she requires multiple off label medications to function which attract no subsidies. Because I can not leave her side, my leave entitlements have been exhausted and we took out a personal loan to cover my leave without pay. Our finances at breaking point, we could no longer fund the gaps for therapies using medicare or Helping Children with Autism (HCWA) funding. We needed the NDIS (National Disability Insurance Agency) and the good news is, the NDIS has been nothing but positive for our child and family.
Because of the NDIS our daughter now receives highly specialised behavioural intervention services with Irabina Autism Services. Because of the NDIS we receive
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funding to engage support workers who can be with our daughter to provide respite and mentorship and we can pay for specialised psychology services.
Having experienced the many benefits the NDIS has provided for our family and child it is easy to see why and how the education system is getting it so wrong. They are not experts in disability. The NDIS is. Schools need to know how to provide inclusion in education for children with disabilities and the NDIS is well placed to provide this direction.
Recommendations
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NDIS provides professional development to education settings
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NDIS and schools work in partnership (with parents) to support transitions for girls with ASD
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NDIS coordinates and participates in consultation, provides advice on reasonable adjustments and supports transitions for girls with ASD
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Transition preparations begin 6 months in advance of anticipated change of setting and follow through for 6 months after the change to the new setting has been made (kinder to school, school to school transfers, primary school to high school, high school to tertiary settings, tertiary settings to places of work)
Conclusion
Frederick Douglass said “It is easier to build strong children than to repair broken men.” And it’s true. You can never reverse the trauma experienced by a child.
When our daughter was 11 years old just before her diagnosis, her Psychologist of 8 years said to me “I’ve never seen anxiety so extreme in a child without trauma”. And I guess it depends how you define trauma. For the neurotypical person trauma seems clear. It’s violence, abuse or neglect. But for a child with autism; who has deficits with pragmatic language, social skills, executive functions, sensory integration and emotional regulation there is trauma in just navigating everyday life.
For our child, I recognise trauma as a cumulative experience. I heard trauma in her high pitched squeals as a baby. I saw trauma in her inability to separate from me as a toddler. It was traumatic for the whole family when she failed to adjust to her baby sister’s arrival. Trauma was within every meltdown. Chronic sleep deprivation, was this trauma? I would argue yes. And yes, there was definitely trauma when she would
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willfully hurt herself by banging her head into hard surfaces. In the playgrounds she was traumatised by the sensory overload and unpredictability of other children. Not getting invited to birthday parties. Getting invited to birthday parties and not being able to go (because of the anxiety). Going to school camp but returning 48 hours later with no sleep. Not going to school camp and instead throwing up because she missed out on what other kids seemed to do so easily. Sitting tests and running out of the time you need to perform. Seeing your grades fall suddenly… which brings us back to the point of diagnosis and so my question is:
Could this trauma have been avoided?
And as the mother of a 13 year old girl with autism, I say to you; with better diagnostic tools for girls the answer is “yes”. With early intensive behavioural intervention before the age of 4 the answer is “yes”. With better models of inclusion in mainstream education the answer is “yes”. And with better management of key life transitions the answer again is “yes”.
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