Submission
No 145
INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM
DISORDER
Name: Name withheld
Date Received: 30 May 2016
Name
withheld
Submission S145 Received 30/05/2016
Family and Community Development Committee
As the mother of two children, 8 and 15 who both have a diagnosis of ASD, I would like to share some of my experiences in relation to:
B) THE AVAILABILITY AND ADEQUACY OF SERVICES PROVIDED BY THE
COMMONWEALTH, STATE AND LOCAL GOVERNMENTS ACROSS HEALTH, EDUCATION,
DISABILITY, HOUSING, SPORT AND EMPLOYMENT SERVICES.
D) EVIDENCE OF THE SOCIAL AND ECONOMIC COST OF FAILING TO PROVIDE
ADEQUATE SERVICES
Heath and Education Services
A profoundly disappointing and damaging experience with Austin Hospital CAMHS, DHS and Kildonan.
In 2013, prior to my son receiving a diagnosis of ASD, my eldest son, 11, came under the care of Austin Hospital CAMHS as a result of some very complex and challenging behavioural and emotional issues. Both ambulance and police had been involved in dealing with my son’s highly escalated state (involving significant property damage, threatening behaviour towards myself and his 6 year old autistic brother and my elderly mother, now deceased). Despite my view that there was an underlying condition contributing to these behaviours of concern, the health professionals involved in assessment insisted that these behaviours of concern were caused solely by ‘parent child relational issues’ and other contributing factors due to relocation, divorce and ongoing conflict between parents. While I received emotional and behavior management support, I knew there was something more going on with my son but they were adamant and they were the ‘experts.’
The CAMHS senior clinical psychologist/case manager and the team leader spent very little time attempting to engage with my son. As a result of my son’s reluctance to engage and his visible discomfort at the initial meeting, it was decided to abandon the meeting after 20 minutes because ‘he didn’t want to be there.’ I was stunned by how quickly the meeting was wound up and how firmly the onus was put on my son to engage, or not. His choice. He was 11 years old at the time. I had expected that a little more effort would be made to sit with the discomfort or to try other strategies to connect with my son. I had expected that they as health professionals, would be understanding of how difficult it might be for my son to engage and that it might take several sessions.
After 10 months of CAMHS involvement and worsening crises (two crisis admissions through ED and several thousand dollars’ worth of property damage due to severe emotional dysregulation and behavioural issues), the CAMHS psychologist finally agreed to visit my son at school in an attempt to engage him. He spent 1.5 hours talking with my son. My son listened, talked a little and in the end, broke down and cried. It is a pity that he had to endure such distress and that I had to work so hard to convince this professional that it was worth a try. Given my son’s emotional distress and confusion and our very limited support network, my son needed to know that someone else cared about his well-being and that he needed guidance and support to make sense of what was happening for him.
Just prior to Christmas in my son’s final year of primary school, CAMHS abruptly cut service. Apparently, this was due to political issues between CAMHS and DHS as to who would hold case management, and cutting service was an efficient was to force DHS to step up and take over case management. This happened just prior to Christmas and left us with negligible
support over the Christmas/New Year period. It was devastating.
Deeply distressed and profoundly determined, I watched this critical support disappear and I watched my family disintegrate as we waited and waited for the support that we so desperately needed. My son did not attend his own graduation. He holed up in the bedroom at his grandmother’s house where he was staying, playing videogames and watching YouTube late into the night. I was forced to withdraw in the middle of the final placement of my postgraduate course so that I could focus on supporting my son, waiting for support services, managing his behaviours of concern and managing my own fears and anxiety about the impact of this ongoing crisis - on the mental health of my son and his younger brother, already diagnosed with ASD.
I lodged a complaint regarding the abrupt cessation of service with the Office of the Chief Psychiatrist and after discussions, CAMHS resumed service to provide a more appropriate and sensitive transition to the next service provider, Kildonan whose focus would be to address the underlying issues and work towards the goal of family reunification, for my then 12 year old son to return to my care. Despite Kildonan’s initially strong commitment to address the complex underlying issues – which were stated as a central premise of their ‘Stronger Families’ program, the significant difficulties in communication between my ex-husband and myself resulted in our complete exclusion from a pivotal care team meeting where the goals were changed by professionals, supposedly, for the good of my son and our family. I was firmly relegated to the periphery and support for reunification with me was cut as they decided to direct support primarily to the dad/son unit. This was ironic, given how apathetic and dismissive my ex husband had been with the process.
Kildonan are well versed in the machinations of the system and were able to reframe goals in a way that satisfied their own agenda. Kildonan staff steered the care team along to to move things along, tick boxes and try something different. My position as parent and primary carer was fundamentally undermined, further entrenching the rupture between my son and I as something ‘sad and painful and almost inevitable’. I could not disagree more strongly.
There is little point in hypothesizing about how things would have been dealt with had my son been properly assessed and diagnosed. My son’s very splintered IQ profile from assessments at 6 and 10 years of age - typical of an ASD profile was given little consideration. Without denying the complexity of our family circumstances: relocation, divorce, sibling with special needs, ongoing conflict between parents, complex family history of mental health issues, I continued to question the lack of a diagnosis beyond ‘parent/child relational issues’ which made little sense in light of my son’s significant issues with emotional regulation, black and white thinking, difficulties in communication and making friends and rages of anger in response to firm and reasonable boundaries.
Many professionals are familiar with the signs of classic autism but there seems to be a dearth of understanding when it comes to Aspergers Syndrome (now known as Autism Spectrum Disorder – level 1 with no intellectual disability or language disorder). This profound lack of knowledge and insight into the nuances of presentations at the ‘invisible’ end of the spectrum inadvertently caused profound trauma for my son, his brother and me.
In light of my new found lowly status as mother ‘non grata’ and with inadequate support, I was shattered to the very core of my being. I focused on piecing myself together, caring for my younger son and my mother who had been recently diagnosed with stage 4 cancer. My eldest son remained angry and shutdown, living with his father and refusing contact with me for 15 months. I had been placed in an impossible position to manage his increasingly challenging
behaviours and care for his younger brother. While a diagnosis does not fix things, it does provide a framework for understanding behavior and it very often links to more appropriate supports. I continued to reach out to my son with the message that as rough as things had been, I was there for him and that things could be different … little by little, he started coming home and a year ago, he moved home permanently. It was a very long slow process to rebuild our damaged relationship as he held me responsible for the trauma caused by his experience with emergency services and in the CAMHS unit.
It has been an immensely painful and fraught experience. With my son home, we have made slow small steps towards repairing our bond. One day earlier this year, in the midst of a very loud and violent meltdown, he yelled out to my partner who was minding him ‘I know I’m autistic’. He then texted this same message to me. I was amazed and relieved and to this day, I am thankful for my son’s courage to speak of what he saw in himself. This was a pivotal turning point that gave us permission to seek help once again, resulting in a diagnosis of ASD confirmed by two highly regarded professionals.
Three years have passed since the fraught experience of seeking help from CAMHS and Kildonan. The repercussions of ill thought decisions made by professionals along the way have left deep scars in my family. While things have improved substantially since my eldest son was finally diagnosed and we are now getting the support that is needed, not a day passes without feeling the reverberations of the trauma caused by past interventions by certain members of the caring professions who unwittingly caused significant harm to our family.
Earlier this year, I was at last able to complete the final placement for my postgraduate course. This was only possible with a funding grant of $12,000 from Melbourne Citymission to provide respite. My youngest child experienced significant school refusal (Approx 5% attendance from June to December 2015) and began transitioning to special school for autism in 2016. While I have completed this qualification and theoretically, could seek employment, I will not be doing so in the near future due to the ongoing complexity of caring for my my two sons with ASD. I will continue to receive the Carer Payment and work minimally.
The time and energy I expend in supporting my son, navigating the exhausting system to access support, and helping others understand their presentations of autism, leaves little time and energy for anything else. Despite recommendations from past lecturers that I pursue a Masters and PhD, I can see little scope for the realisation of my own potential and gainful employment when I have to work so hard to make sure that my two sons do not fall through the cracks in the system.
Last year, when my youngest son was Grade 2, his anxiety reached such high levels that it often took 2 hours to get him to school. Once, again, Austin CAMHS were involved but unfortunately, the psych support CAMHS provided did little to address this issue until it reached the point where my son flatly refused to attend school. There was no effective psych support through the school, Department of Education or CAMHS in relation to the issue of school refusal. I was stunned that there was such little support given his young age.
My son became increasingly shutdown and refused to leave the house. He also developed obsessive compulsive disorder through picking at his sores until his arms and legs were covered in open sores that took 5 months to heal. This has resulted in ongoing need for support through the Affirming Families Program (Melbourne Citymission) to manage the increasingly complex and challenging behaviours.
Dealing with autism and the often accompanying mental health issues is complex and challenging but dealing with the system can be so exhausting and at times, disempowering that it can inadvertently contributes to higher levels of stress and loss of hope for families that are already dealing with significant challenges.
Research shows that autistic children (with no Intellectual Disability) consistently underperform in relation to their IQ. I fear this will happen to my son given the very limited scope of educational services in Victoria for children with autism.
How do we support children on the spectrum in mainstream and special schools when the Department of Education mandates that autism specific schools only report on social, personal and communication goals, excluding academic goals, even for ASD children with no intellectual disability, inadvertently, lowering expectations? How do we support children with autism to achieve their full potential if their strengths and interests are not supported in a meaningful way? How will unrealistic expectations impact on the self-esteem, future educational opportunities and life options of children with autism?
We need to better understand the complexities and nuances of Aspergers and higher functioning autism rather than default to a stock standard - one size fits all - understanding of autism.
We need to proactively nurture the strengths and interests of children on the spectrum by expanding their world and understanding through their special interests.
We need to fully integrate social skills/emotional regulation programs into the curriculum for children on the spectrum.
We need to ensure that we do not limit their life options by neglecting their education and the development of critical literacy and numeracy skills.
We need to understand the critical role that respite plays, as an essential support that allows parents to continue on in their role as primary carer of their child with autism.
We need to listen to each other - as parent, health professional, teacher and child - and develop a meaningful and effective collaborative partnership to support the development of the child with autism. Kind regards,