Lived experience autism advocates said there was a danger their communities would avoid the program altogether because they ‘don’t trust it, and don’t want it’.
Advocates for the autistic community have slammed Dr Mike Freelander’s handling of the federal Inquiry into the Thriving Kids initiative after a fiery hearing yesterday that one disability inclusion advisor described later as “one of the most inaccessible, disrespectful, and exclusionary processes I’ve ever participated in”.
Tensions spiralled during the third roundtable of the day in which representatives from the Autistic Self Advocacy Network of Australia & New Zealand (ASANANZ), the Autism CRC, the Regional Autism Engagement Network Tasmania, and the Australian Neurodivergent Parents Association (ANPA) gave evidence before the committee, chaired by Dr Mike Freelander, the Labor member for Macarthur in NSW, and a paediatrician.
In a bid to keep the inquiry on track in terms of scheduling Dr Freelander frequently cut speakers off, with some lived-experience witnesses believing he was favouring “neurotypicals” over autistic participants.
“Today’s parliamentary hearing for the Thriving Kids Inquiry was one of the most inaccessible, disrespectful, and exclusionary processes I’ve ever participated in,” said Alexandra Bignell, an autistic woman and inclusion advocate with ASANANZ, in a LinkedIn post.
“As an autistic woman who thinks in images, speaking in high-pressure environments is extremely difficult.
“I was the only witness who was cut off mid-sentence, despite having difficulty speaking, triggering a trauma response that lasted the rest of the hearing, leaving me unable to contribute further.”
Ms Bignell was the second speaker of the session and had spoken for just over two minutes before Dr Freelander cut her off mid-sentence.
“Your colleague has already gone through those very important [points],” he said.
“If you do have some more information you’d like to give us, you’re welcome to email it through that to the committee, but we will have to move on to the other groups, to be fair, give them time to give evidence.”
Ms Bignell also detailed other incidents before and during the hearing including:
- When asked whether the access requirements of one participant had been received, the response from Dr Freelander was “offhand and dismissive”;
- When ANPA provided evidence, Dr Freelander responded with “I don’t agree with you”, a response Ms Bignall called “not how evidence-based inquiries are run and is unacceptable”.
One problem that was obvious to anyone watching the inquiry, as HSD did, was the grouping of lived-experience witnesses with researchers, which created a tense dynamic.
At one point, Cheryl Cole, representing ASANANZ, pointed out to the committee the unhealthy dynamic that had developed in the space of half an hour.
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“Evidence has shown that autistic people, neurodivergent people, communicate differently to neurotypical people, and we can see that here today,” she said.
“The rapport that has been shown, even within this meeting, between neurotypical people that are present has built very quickly, and there is a clear disconnect between those people that identify as neurotypical people here, and those people that identify as autistic.
“Now, that is okay. We are all different. That is not a criticism of anyone. But what it is showing us is … that neurodivergent people communicate differently.
“This is why codesign at all levels, at all stages, is so critical, because if you can’t get what support needs translated without being interfered with, you’re not going to deliver the support needs that are actually required,” she said.
“It’s really important that the committee understands that when you have people standing in front of you, sitting in front of you, who perhaps present in the way that feels the most comfortable to you and look the most credible – it doesn’t make it so.”
Ms Bignall went further in her LinkedIn post:
“This does not reflect safe and inclusive practice,” she said, calling it a “fundamental misunderstanding of autistic communication”.
“The way autistic representatives were treated today reinforced exactly why the Thriving Kids Initiative is at risk,” she said.
“If autistic people cannot even participate safely in an inquiry, how will this system ever be co-designed with us?”
Sarah Langston, from the ANPA, pointed out to the committee that the biggest barrier to the success of Thriving Kids was the fact that “the community it is being designed for does not want it”.
“When there is low community trust for a service, parents will avoid it,” she said.
“My biggest concern, actually, about Thriving Kids is that the world moved on from the medical model, and this [program] really does lean that way.
“Our community does not want this and has been so clear that we do not want it … families were so clear that they would prefer no service to a service that … that does cause harm.
“What I see, and I have a huge concern about this, as president of ANPA, is that families will avoid services altogether for children.
“If this goes ahead, I am very concerned about a generation of lost children who receive no services at all because they do not want to expose their children to services that they see as bad for them.”
Co-design, or the lack of it, is the biggest concern for people with lived experience, particularly those parenting neurodiverse children, the inquiry heard.
“To be successful, Thriving Kids must be co-designed with neurodivergent people at all stages and all levels,” said Ms Cole.
“This includes governance led by adults with lived experience of being the children the initiative seeks to support.
“I repeat, to be successful, Thriving Kids must be led by adults with the lived experience of being the children the initiative seeks to support.
“We must provide effective early supports that are neuro-affirming, not behaviourist, and we must ensure we don’t have supports that suppress autistic traits, like [self-stimulating behaviour], that cause documented harm, including anxiety and trauma.
“We call for neuro-affirming, informed interventions, respectful, transparent, independent evaluations that are clear from conflicts – meaningful co-design, nothing about us without us from policy through design, implementation and evaluation.
“Our message is simple – do this once, do this well and do this with us. Together, we can create a neuro-affirming, co-designed system that ensures autistic children and neurodivergent children thrive with emotional wellbeing, a feeling of safety in their identity, confidence in communication and families that feel supported, not blamed or fearful.”
The inquiry continues.
