Heidi La Paglia Reid
So in the neurodivergent space lately, everyone is talking 
Inklings
If you don’t know, the context is that the Federal Labor government committed $14.8 million last week to a trial in South Australia which is: “designed to provide crucial assistance to parents and caregivers in understanding the needs of infants between the ages of six to 18 months who exhibit early signs of autism.”
As stated on the official website, “The Inklings Program has been developed over a decade by an international team of health professionals and researchers interested in reducing disability associated with autism.”
As many of you know, the funding announcement to this program prompted me to revoke my decade long membership with the Australian Labor Party, which is something I had been thinking about doing for a long while.
You may ask however, why?
On the surface this looks good right? I can understand why people see it as something that would have benefited them as parents and as children.
The thing is, when you delve into what it involves, it is clear (in my opinion) that Inklings is not what proponents claim it to be.
Let’s break this down.
1. The main researcher behind Inklings has stated that babies who receive the intervention (between the ages of 6 and 18 months) are less likely to meet the threshold for an Autism diagnosis at three years of age. Why is a lack of diagnosis a good outcome for children? It isn’t. Without an Autism diagnosis or at least identification, Autistic people and our parents lack understanding of ourselves and are denied essential supports.
So let me ask again, why is this a good outcome?
The answer, it is a good outcome for Government $$$. It is no coincidence that this funding has been committed immediately following the first ever major review of the NDIS, which was and continues to be surrounded by (incorrect) claims that an over diagnosis of Autism is causing a burden on the system.
2. Inklings claims to ‘reduce disability associated with Autism’ by changing the way parents interact with their infant children. There are several problems with this.
Firstly, it is parent blaming. It implies that parents cause or increase disability in their children through their parenting styles. Noting that many parents of Autistic children are also Autistic themselves, this is also very ableist and plays on the pervasive, but unfounded view that disabled people cannot be good parents.
Secondly, it frames disability through the Medical Model and individualises the way that society disables us.
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I emphasise this next point because It is something I am not seeing anyone talk about.
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As an Autistic person, I am am not inherently disabled. I am disabled as a result of in a society that doesn’t accommodate for me. I feel disabled when I go to the supermarket and experience sensory overload due to flickering fluorescent lights and loud noises. I feel disabled when I am in a meeting and people use vague convoluted language or metaphors that I don’t understand - as I am very literal in my communication. I am disabled in job interviews when I am assessed on my performance and ability to think and respond on the spot because I have verbal processing delays associated with my Autism. I am disabled by neurotypical expectations (combined with gendered expectations) of what being a mother, a worker, a partner etc. should look like. I am not disabled purely because I am Autistic.
You see what I am saying? My parents could have had all the resources in the world and it wouldn’t have changed the fact that society is built for people that are neurotypical.
This is the *Social Model of Disability 101*.
Look it up!
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3. Inklings uses a protocol called iBasis-VIPP. I have read this. On the surface this looks OK. But, when you get into the detail, it is clear that it encourages parents to stamp out Autistic behaviour. For example, in response to ‘hand-flapping’ (which is a movement Autistic children (and adults) often do when they are happy), parents are encouraged to divert the behaviour into something more ‘useful’ such as ‘shaking a shaker.’ Why? How is this improving communication? How is it improving anything at all? All it is doing is teaching a child to alter a behaviour that is not considered acceptable to the neurotypical population.
4. It is very hard to find any real information about Inklings online. Why? To me this suggests there is something to hide.
Additionally, having looked at the programs website over the last six months, I’ve noticed the language around the program has has changed significantly, despite (to my knowledge) there being no changes to the actual protocol. In response to criticism from the neurodiversity movement, the owners and proponents of the program have changed the language to *sound* more neuro-affirming. Does this make the program more neurodivergent friendly? No. It is a marketing strategy. I don’t buy it.
5. The researchers behind Inklings claim the program to be effective in supporting parent communication with their baby and boosting social communication and language development.
This research is being done on babies. It is true that neurodivergent babies don’t develop in the way that neurotypical babies do. Their development is, as we know, Atypical. They may develop differently, but they still develop and still communicate. The difference is that their communication is not typical. It what is expected by a society dominated by neurotypical values. There is nothing wrong with this. We don’t need to force neurodivergent babies to develop like neurotypical children. They are neurodivergent, their differences make our society neurodiverse. Neurodiversity is not bad. It makes our society interesting, creative and innovative. Difference makes our communities thrive.
6. The Inklings website states that “the program has been trialled in two clinical studies; one in the UK of 54 babies, and one in Australia with more than 100 babies. The clinical trials found very similar results.” This is a grand total of less than 160 babies worldwide, and all within the last 10 years. This is not significant enough to generalise to the entire population and even if it was, the longitudinal assessment is not yet at the stage where we can determine the long term outcomes. So the Government is like, we have this study we’ve done on babies. We don’t know what the long term outcome on their lives will be yet but let’s roll it out to everyone. Great. No. Not great. This is potentially dangerous and extremely unethical.
7. The Inklings website states “The babies who received the program were found to have improvements in their social interaction and communication ability.” Perhaps, but on the basis of what and evaluation by whom? I suspect: A neurotypical framework of what is considered to be an improvement.
8. Inklings was designed by a group of researchers. It was not developed in co-design or consultation with Autistic people and the Government decision to inject funding into its roll out was not informed by Autistic expertise or experiences. Out of everything. This is the biggest problem. We did not ask for this. We do not want it and it does not “improve” anything for our community.
Disclaimer: This post is based on my own individual analysis and opinion. I encourage you to form your own opinion by doing your own research.
#Inklings Amanda Rishworth MP Bill Shorten
[Image: Teal background with white text: 'So everyone is talking about Inklings.' In the bottom right hand corner is the Heidi La Paglia Reid Consulting logo].
I will also add: this is not the first roll out in Australia. The first was funded through the NDIS National Disability Insurance Agency and occurred in Western Australia.
from https://www.facebook.com/photo?fbid=122184280664002837&set=pb.61550085134216.-2207520000