Senate Select Committee on Autism
13-Apr-2020
Introduction
Alex is our beautiful 12 y.o. severely autistic son, who faces a mountain of adversity each day. Full of energy, with a cheeky glint in his eye, he enjoys a wonderful, unique sense of humour. Alex spends his days reciting his echolalic phrases, delighting when a trusted carer joins in. He struggles to be in the same space as other children and only accepts certain adults. When anxiety and sensory overload combine, as they do frequently, Alex will communicate his profound distress through biting, grabbing, kicking, hair pulling and devastating self-harm – often banging his head on corners, windows or brick walls. His daily existence is a fragile balance between contentment and pleasure and chaos and utter distress.
In diagnostic terms, Alex has a complex neurodevelopmental presentation of multiple co-morbid conditions including Autistic Spectrum Disorder (ASD) Level 3 in association with a Severe Intellectual Disability (ID), a severe communication disorder, severe sensory processing difficulties and Generalised Anxiety Disorder. Alex also presents with multiple behaviours of concern that have been present since he was a toddler and are frequently resistant to intervention. Despite support from highly skilled staff in all settings, an environment which is fully adapted to meet his needs and attentive, devoted parents and carers, Alex continues to present with behaviours of concern daily. He displays high frequency, high intensity behaviours that present significant risks to himself and others on several days each week.
Alex’s physical health issues combine with his neurodevelopmental conditions to result in these severe behaviours. Alex experiences intense distress due to digestive pain which escalates when he needs to move his bowels. Alex’s bowel movements are not regular despite medical interventions to alleviate this. As a result, Alex experiences extended periods of discomfort and pain even over several days, and this is a significant trigger for his behaviour. Despite following medical advice and treatments to address Alex’s bowel issues and the pain that they cause, all interventions to date have been ineffective.
Over the last 8-10 years we have adapted our lives, re-setting our priorities, limiting our involvement in almost all areas of life to be able to do what we can to care for our precious son, born with such overwhelming and complex support needs. Alex’s number one goal on his NDIS plan is to continue living with his family for as long as possible and for us all to feel safe. This is an all-consuming challenge. We don’t go on holidays as a family, or join extended family for Christmas, birthdays or other occasions, or partake in so many other typical family activities. What we do is pour our lives into trying to make Alex’s quality of life better. At times it seems that he lives with daily torment and distress that breaks our hearts and stretches our resolve far beyond what we thought was possible for us.
Key points in submission
NDIS: The support needs of severely autistic participants with complex needs must properly be considered and managed ancillary to general approaches regarding autism. Restrictive practices rules and guidelines need a common-sense approach so as not to reduce freedoms of highly vulnerable people.
Advocacy: Much autism advocacy inadvertently works against someone like Alex and fails to acknowledge the reality and challenges of severe autism with complex needs and behaviours. Given the huge span of the spectrum, sub-classifications are necessary for any practical purpose and to foster improved understanding of the stark differences and challenges throughout the spectrum.
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TOR h. Adequacy and efficacy of the NDIS for autistic people:
Our experience with NDIS interactions and supports has been one of incredible contrasts:
‘Wonderful Team Alex’, including NDIS funded support workers and allied health professionals whom Alex now enjoys around him has been transformational to his quality of life and helped our family out of precarious and seemingly hopeless circumstances. We have found wonderful, committed people who genuinely love Alex and aspire to work long term with him. We have hope for the future!
‘Bureaucratic nightmares’ by contrast, describes our interactions with the NDIA in relation to Home Modifications (HM), Assistive Technology (AT) or relating to exceptional circumstance such as Alex’s substantial transport needs. The decision making has appeared distant and poorly informed in relation to autism, complex needs and participant choice, with long delays and opaque process. An NDIA spokesperson even made a disingenuous claim on ABC Breakfast News TV in relation to a specific decision that we received; the ensuing complaint process, unresolved a year later, has shown a lack of concern and accountability. We were advised that repairs or reinforcing of bedroom walls and windows that Alex breaks when dysregulated is not something funded by NDIS, because ‘normal, naughty children’ do also break them. Given the severity of Alex’s condition, this seemed staggeringly ignorant and inappropriate; Alex is not being ‘naughty’ when he bangs his head against windows or walls and drawing such a parallel highlighted a high level of ignorance in some parts of the NDIA.
Complex Needs: Alex is now on the Complex Needs NDIS stream. Although this stream appears to still be finding its feet, we do trust that this will result in much greater expertise and more transparent and informed decisions in relation to what non-core supports are reasonable and necessary for participants like Alex. The NDIS needs to continue to invest in developing expertise specifically with severe autism, severe/profound IDs and complex needs and behaviours. The needs of these participants must be considered ancillary to general considerations regarding autism, which in almost all advocacy and policy situations does not adequately include or represent someone like Alex, and frequently inadvertently works against his best interests.
NDIS Quality and Safeguards Commission: We trust that the Commission will serve well and protect Alex and many others over their lives. Unfortunately, it currently presents bureaucratic red tape and delays, as well as driving a reduction in services and opportunities available to Alex with his complex behaviours. Almost all providers of day care and respite do not offer these services to clients with complex behaviours and this market has become even thinner with the introduction of the restrictive practices rules and guidelines. There are now no day services that we know of in Victoria that will provide care for Alex. The one service that did exist has been rendered impractical since the provider’s response to restrictive practices rules involved removing door locks at the premises. From this point they could no longer cater for Alex’s needs and behaviours of concern given that they were no longer able to keep him separate from others when dysregulated.
We need clarity and help navigating this space as parents. Alex’s complex needs and choices rarely fit into standard boxes in most aspects of life, including how he stays safe and how he expands his community participation. A common-sense approach, allowing pragmatic application of the guidelines is necessary in order to avoid politically-driven over-reaction, with unintended consequences that work against Alex and others with severe autism and comorbidities including severe/profound IDs and presenting with behaviours of concern. When Alex is breaking windows with extreme force of repeated impacts with the back of his head and carers stand back watching, too frightened to intervene due to fear of breaching a restrictive practice rule, clearly Alex’s best interests are left smashed with the pile of broken toughened glass.
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TOR l. The capacity and sustainability of advocacy, self-advocacy and self-determination supports for autistic people, including mechanisms to self-represent to government as enshrined in the United Nations Convention on the Rights of Persons with Disabilities
DSM-5 presents a giant umbrella diagnostic term ‘ASD’, which covers people in very different ‘worlds’, with vastly diverse experiences and conflicting worldviews regarding autism. This presents a great challenge and is unfortunately a source of discord between autism advocates. It is important to recognise the severity levels that DSM-5 specifies and the very different needs and perspectives of those with ASD along with IDs and other co-morbid conditions.
Advocacy groups, including the peak autism body in Victoria, frequently do not adequately represent the perspective and needs of those most severely impacted by autism and the co-morbid conditions. The principle that “Only autistic people can tell us about the experience of being autistic and what needs to change to improve their lives,” unfortunately excludes Alex, who can’t speak for himself. His experience and needs are overlooked using this principle. Where this deficiency is acknowledged, advocacy groups may establish complex needs sub-groups, however those efforts appear token at present. The overwhelming weight of opinions in public advocacy appear to be from a ‘neurodiversity’ standpoint, which may have a positive role to play for some, but unfortunately does not appropriately represent Alex nor presumably many others more severely impacted, and who may not be able to speak for themselves.
To illustrate, we list a sample of common propositions in the current dominant narrative as follows: Autistics do not suffer from autism, nor are touched by autism; they prefer identity first language, avoid functioning and severity labels and levels, discourage ‘inspiration porn’; and may see autism as something to be celebrated. These sentiments are frequently presented as representing the ‘autism community’. We are obliged to highlight that such a ‘community’ does not include all people with autism, and certainly not many with severe presentations and co-morbid diagnoses. Many of these sentiments are just so inappropriate to Alex that they should only be made with a caveat that they do not represent all autistic people. How can we or Alex celebrate the condition that so often torments him and why should we feel ashamed when we wish autism banished from his life?
It is readily understandable that those like Alex will have a particularly small voice. They rely on others to advocate, usually parents and caregivers, and those advocates are frequently so exhausted and stretched that standing out and advocating is not feasible. A much greater understanding of those severely impacted with autism, severe/profound IDs and complex behaviours is required so that appropriate advocacy can be established. This is a small, highly vulnerable group of individuals, largely misunderstood, whose existence and heart-breaking realities are often treated, in our view, even by leading autism advocacy groups, as ‘myths’ to be dispelled or stereotypes to be avoided.
The Victorian Autism Plan (Dec 2019) acknowledges the challenges that we and others face. Commitment 3.3 reads “Increase the inclusion of autistic people with complex needs and their families.” The plan acknowledges feedback that people with complex needs and their families don’t always benefit from actions that address the needs of autistic people more generally and it defines processes for bringing expertise on complex needs into any relevant policy work. A commitment to such processes specific to those with complex needs should also apply to any national autism plans.
Our perspective and advocacy represent one person with autism and his family. We do not attempt or claim to represent the viewpoints of all people with autism. We ask that others, whose experience is not with severe autism and severe cognitive and functional impairments, not claim to represent Alex. The lack of similarity of experience means these worlds need separate representation. We are genuinely glad for those autistic people who can contribute productively in the community and industry, some of whom are
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incredibly articulate and impressive, some can even celebrate their own condition as neurodiversity. We do however strongly recommend that, in any national autism initiatives, the neurodiversity perspective cannot be considered an appropriate representation for Alex and others with severe/profound IDs and debilitating co-morbidities. That would put them at very high risk of being misunderstood, left behind, in some cases worse off and inevitably hidden.
We recommend that National and State strategies and the NDIS need a balanced representation of views from the very different worlds that the autism spectrum covers. Given the huge span of the spectrum, we believe sub-classifications are necessary for this and any other practical purpose. Less broad, more helpful categories should be used to foster better mutual understanding and support and to properly recognise the similarities and stark contrasts.
Conclusion
We love our child dearly, but not the condition which so severely impacts his health, wellbeing and quality of life. That condition we cannot celebrate, nor would it be appropriate to. However, we do devote our lives to supporting him and trying to improve his quality of life and prospects for the future. We seek awareness and supports appropriate to the severity of his condition and the complexity of his support needs. We do not seek a positive ‘spin’ that obscures the truth of his realities, nor well-intentioned but poorly informed implementation of policies that reduce freedoms of vulnerable people that they try to protect. We are keenly aware that the overwhelming weight of opinions in public autism advocacy will not reflect Alex’s experience of being autistic and what needs to change to improve his life. He is unable to advocate for himself, and so we respectfully submit this contribution to the Senate Select Committee on Autism.
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