Thriving Kids Program
To whom this may concern,
I am writing this letter to provide some insights into caring for a young child who has autism with a pathological demand avoidance (PDA) profile, and to highlight some areas that I hope will be thoroughly considered when developing and rolling out the Thriving Kids program in the future.
I have a degree in health and education and have completed numerous professional development courses on supporting children who have autism. However, prior to my daughter’s diagnosis, I had not heard of ‘PDA’ as a profile of autism and was not at all equipped in knowing how to support my child. I now understand that PDA is a subtype of autism which is caused by a nervous system disability, and which results in extreme levels of anxiety. I often wonder how parents who do not have prior knowledge or experience adjust to parenting a child who has autism, and in particular, a child who has a PDA profile of autism. I feel that PDA is not well known about or understood in the wider community - even amongst many education and healthcare professionals.
Having a daughter who has autism with a PDA profile has taught me that the level of support that is recommended to a person following an ASD assessment only takes into account the diagnostic criteria relating to autism in the DSM-5. It does not take into account the debilitating condition of pathological demand avoidance. When working out if the NDIS or Thriving Kids program will be more suitable for certain children, it will be important to consider the support level required by the whole child and family rather than the support level suggested by a single diagnosis.
My child experiences many of the typical challenges that are associated with autism and has been recommended for Level 2 support. Although she is highly articulate, she has significant difficulties with social communication and interaction, emotional regulation, and restricted and repetitive patterns of behaviour. These characteristics though, are not what is most disabling for her and our family. PDA adds another whole level of complexity and hardship to her disability.
I first discovered PDA when my daughter began to experience burnout in kindergarten after her teacher suddenly and unexpectedly changed and a different style of behaviour management was experienced. She was unable to complete her year at kindergarten, despite me staying with her to support her whenever she went. Her therapists subsequently confirmed that PDA is a part of her neurological make-up.
She lasted less than half a term at school, despite careful PDA-aware planning and support by her teacher and therapists. She was excited at first and attended for a few hours a week with my full attendance and support in the classroom environment. However, once the novelty wore off, her ability to manage the demands of school life rapidly deteriorated - even when substantial accommodations were put into place like negotiating days and hours of attendance, wearing casual clothes rather than the school uniform, having our own quiet space to work in, and eventually only going to school to see the therapy dog in a separate
room. We quickly reached the stage where she was unable to enter the school gates without having a full-blown meltdown. Taking medication to treat anxiety has not significantly improved her PDA symptoms and we have had to resort to home-schooling.
Current research suggests that approximately 70% of children who have a PDA profile of autism have very limited or no school attendance. Unfortunately, this leads many families into a home-schooling situation that was not planned, and many parents have limited if any training, lack appropriate resources and are completely overwhelmed by trying to navigate both the health and education systems for their children. Sadly, in my experience, schools do not support home-schooling families with any educational programs or resources. Whilst I imagine that education is outside the scope of the Thriving Kids program, it is important to recognise the impact that this all has on many parents who have children with a PDA profile.
Although my daughter is much more settled now that she receives her education at home rather than in the school environment, she continues to experience high levels of anxiety and a need for control in everyday life. This results in many challenges for her and our family. For example, she often needs my undivided attention 100% of the time to co-regulate her nervous system. When I try to speak with my husband, extended family, friends or people on the phone, she quickly becomes highly agitated and physically aggressive, making this seem almost impossible at times. As I’s sure you can imagine, this puts a significant strain on my relationship with my husband and impacts the support that we can receive from extended family and friends. She also resists regular necessities such as grocery shopping, which results in careful negotiations of when and how we will undertake such activities so that her anxiety levels and the risk of a meltdown are not too heightened. I have read and heard that these difficulties are commonly faced by many other families of children who have a PDA profile of autism.
My daughter has spent the past year building rapport with her allied health therapists, and I am very grateful for the connection that she has made with her therapists, particularly as she has limited social interaction outside of our family. I am worried that the roll out of the Thriving Kids program could result in a change to her current therapists. Having to adjust to new therapists could be a huge setback for her and could affect her willingness to engage in any therapies at all in the future.
I am also concerned about the mental health impacts of adjusting to a new therapy system for children who have a PDA profile of autism and for their siblings and caregivers. As already mentioned, a PDA profile is widely understood to be caused by a nervous system disability which results in extreme levels of anxiety. Research has shown that people who are neurodivergent or have one mental illness are more susceptible to developing additional co occurring mental illnesses or neurodevelopmental differences. Indeed, my daughter also has attention deficit hyperactivity disorder. If our family is not well supported when the Thriving Kids program is rolled out, I am worried that her mental health could further deteriorate.
In addition, many parents of children who have autism and PDA are also neurodivergent themselves - whether diagnosed or undiagnosed. As a result, a change in services is likely to
contribute to further stress and burnout among a significant number of already exhausted and burnt-out parents.
It is my hope that when developing and rolling out the ‘Thriving Kids’ program, the challenges experienced by children who have PDA and their families will be well understood and that our families will be thoroughly supported to adjust to any changes that we might face. I really hope that we can experience what it feels like to be ‘thriving’ rather than being left to feeling like we’re ‘barely surviving.’
Thank you for considering my experience and concerns.