21/08/2025
OPEN LETTER to The Hon Mark Butler MP,
I write to you, an open letter, in response to your speech presented yesterday (20th August 2025) to the National Press Club.
I am an allied health professional, a business owner, a neurodivergent woman, but the most important role of my life is as a mother to three incredible neurodivergent children.
Your speech highlighted the history of disability rights, deinstitutionalisation, and the vision of the Every Australian Counts campaign. We deeply respect and share that vision. However, I could not let this day pass by without highlighting my deep concerns with the narrative of your speech.
First of all, let’s not pretend the decision to remove children from the NDIS is anything more than financial. The fact of the matter is, you do not have children's or families‘ best interests at heart.
Saying that NDIS is not the right place for autistic children due to it being a place to “provide support for people with significant and permanent care and support needs” demonstrates your fundamental lack of understanding of autism.
Autism is a life-long condition, often significantly affecting the quality of life of the individual and their families (Posar & Visconti, 2019).
Alongside that, framing autism as “mild” or “moderate” misrepresents what Autism is. Autistic individuals, for diagnostic purposes only, are given an arbitrary “level” based on their current support needs. These levels are highly stigmatising and problematic to the Autistic population.
The support needs of an autistic individual change at different times in their lives, even day to day, and just because someone only has “minimal” support needs at one point in their life (at the time of diagnosis) does not mean they are “less Autistic.”
Their support needs change depending on their environment, demands, people around the individual, the supports that are in place and the time of their lives.
When Autistic individuals are thriving, it is not because they are becoming “less autistic,” or that the autism isn’t less impactful, it is because they are receiving appropriate supports. To suggest otherwise undermines the daily reality that autistic people face living in a neurotypical world.
It highlights, that despite being the minister for the NDIS, your view of what autism is, is highly ableist and you have not listened or are not listening to the lived experience of autistic people.
The research is clear that intensive supports in the early years lead to better lifelong outcomes. These outcomes are not indiscriminate. They are outcomes supporting dignity, wellbeing, and the ability to live life authentically.
The threat of removing NDIS access without ensuring you have a plan for funded services that have been designed in consultation with the autistic community and families increases the mental load and burden of families who are already not provided with enough choice, control and support.
Are families going to be offered a service that truly reflects the nature of their child’s disability, or will they just be offered significantly less support under a new name? Autistic individuals must be central in shaping reforms in this space, not as an afterthought, but as co-creators. It is deeply disrespectful that this announcement has come before any consultation with the autistic community or families supporting autistic children.
The Thrive program must be based on what our autistic children and families need. Prior to making major announcements to the media with ‘ideas’ of these significant changes, shouldn’t you first have a sustainable plan?
There are so many questions that require responses:
Will Thrive provide the intensity, frequency and individualisation that autistic children currently can receive through the NDIS?
How are children (like my own daughter) who are unable to attend school due to schools not supporting their neurodiversity, or those who have been excluded from mainstream settings, going to receive supports when they will be provided in those environments?
How are autistic children going to receive individualised supports in mainstream environments?
Without this clear framework, families like mine, and the families my business supports, continue to face uncertainty, fear and trauma.
Next, your claim that autistic children are being “overserviced” demonstrates your lack of understanding of the nature of autism and the impact that it can have on a family and individual.
There is no “right” amount of support for our children. It is highly variable and dependent on an individual’s support needs at the time. You also cannot put a number on “overservicing” (although you apparently tried to), but what, to you, appears to be “overservicing” from a numbers perspective is often not even the minimum required for inclusion into a neurotypical society for many of our children.
It also assumes a neurotypical benchmark for what is “enough.” Autistic children require extraordinary energy and support merely to exist in a world not designed for them. These supports are not excess, they are purely supports for survival.
Your view of what therapy is for is also ableist. The supports our children should receive are not aimed at “fixing” autism, they are attempting to allow our children to embrace their beautiful selves in a world where it is run by individuals who tell them they are “broken” and need to “change” while also telling them they aren’t “disabled enough” to receive funding for their challenges.
I see firsthand all the time when supports are withdrawn, progress stalls, distress and dysregulation increase, and greater downstream costs emerge, such as mental health and education costs, due to individuals not getting the support they need, and it places more strain and stress on families.
Finally, Minister, I urge that you hold fast to your quoted statement “nothing about us without us.”
I stand with families, the Autistic community, and my fellow allied health professionals and neurodivergent individuals, to be able to trust the government to co-create solutions that reflect the values of safety, trust, connection, and dignity, that autistic children deserve.
Autistic children are not a problem to be fixed or a cost to be contained.
They should not be thought of as a burden to the taxpayer.
They are our brilliant children who are worth fighting for.
Sincerely,
Linda Baker
Neuro Flourish Owner,
Neurodivergent Woman &
Mum to Autistic children
