1
Submission to House of Representative Inquiry into the Thriving Kids Initiative.
Dr. Maryrose Hall ( Independent scholar)
Contact details:
Email address :
Postal address:
Mobile phone number :
The following submission is based on both my lived experience as a parent of a child ( now a young adult) diagnosed with high-functioning autism and my scholarly research in the area of language and cognition in autism. I have recently completed a PhD in the field and currently have an offer with a major international publisher for publication of that research as a book.
That research was an examination of a set of psychological tools made to assist my son in four principal domains, all of which are aspects of function known to present challenges for children diagnosed with ASD. To be more specific, the he tools I made address difficulties in making eye-contact, modulating voice volume, taking turns in conversation, mastering the skills of handwriting, learning to write, i.e. compose written discourse, and the development of clock-reading skills and learning to operate with a concept of time. In the development of the tools, I used an approach based on ideas drawn from the works of A.R. Luria, the founder of neuropsychology and his collaborator, the developmental theorist, L.S. Vygotsky.
My first experience in negotiating with a funding agency arose when my son ( now 28 years of age) was denied access to a state government funded program on the basis that he did not show evidence of neurological impairment. That program was being administered through a local agency. I subsequently learnt that children
2
living in a different local government area with the same diagnosis as my son were able to access supports and funding via the program. I was informed that the variation across local government areas was due to differences in the way the guidelines were being interpreted by the different funding agencies. To be eligible for funding a child had to have evidence of a neurological impairment, so I made the case that the various impairments of autism were indeed evidence of neurological impairment.
As a result of a rather lengthy negotiation process which took twelve months to be resolved, we were then offered the opportunity to participate in what was described to us as the pilot program of managed by the State Government, namely the Support and Choice. We were told that that pilot program was a forerunner to a what was to become the new national program, which was the NDIS.
I have no hesitation in saying that my son’s excellent outcomes were in large measure due to the more flexible funding model and the consultative approach which underpinned the Support and Choice Program. In particular, the ability to access the necessary allied health therapies, most importantly speech therapy and occupational therapy all under the guidance of an appropriately trained planner proved enormously beneficial for my son, and our family. When the time came for transition to the NDIS, this proved to be a smooth process. My son’s continued progress supported by the NDIS has contributed to his very pleasing progress.
I should like to make it plain, that at that time (the early 2000’s), it took four years to obtain a confirmed diagnosis. Once the complexities of that medical process had been resolved I came to the view that what was necessary to supporting the child’s development was an educational response. This view was informed my reading of the scholarly works in the field of special education, of the Russian developmental theorist, L.S. Vygotsky, alongside the works of his collaborator, A.R. Luria, today considered to be the founder of the field today known as neuropsychology. It was that material which provided the theoretical foundation for the work to be presented in my book.
Therefore, as a person - a mother- with both personal and scholarly knowledge and experience, I would like to describe what I believe to be the essential components of an effective, scientific, educationally and developmentally informed approach to the provision of services and supports to children with neuro developmental disorders including ASD, enabling such children “thrive”.
3
In order to address the difficulties in language use and comprehension experienced by children with ASD the provision of long-term and ongoing speech therapy is essential. Supporting language development via the provision of speech therapy is essential to addressing the cognitive and social impairments which characterise ASD. As language-enabled children with autism can often appear to be highly verbal, recognition of the nature of their considerable impairments in knowledge of language use, what are described in linguistic terms as difficulties in the domain of pragmatics are often poorly understood. Only with age-appropriate forms of speech therapy can these difficulties be ameliorated.
For parents /carers and family members of children with ASD, being present at speech therapy sessions can serve as a source for new models of interaction and engagement with a child who may be experiencing difficulties in communication. The opportunity to observe how a clinician works with a child with language and communication difficulties, can provide parents/carers and family members with ideas for effective ways of interacting with the child. They can learn how to utilizing skills and capacities the child may have already mastered as the basis for assisting the child master new skills. To this end, there is ample research evidence confirming the positive outcomes which come from improved parent/ carer training in interaction with the child who has communication and comprehension difficulties.
It is now well known that many children with ASD have difficulties in motor coordination and motor planning, difficulties usually diagnosed as motor dyspraxia. In addition, many children with developmental disorders have handwriting difficulties, which when prolonged and severe enough, are diagnosed as developmental dysgraphia. These patterns of difficulty indicate the vital importance of paediatric occupational therapy as part of an early intervention process. However, in my view, there are no circumstances, in which the provision of occupational therapy be regarded as an alternative to the provision of speech therapy. Supporting the development of speech, and the use of language as a means for communication and thinking via speech therapy is of fundamental importance. Supporting the development of motor control and planning at both the gross and fine-motor level is the expertise of the occupational therapist and for some children access to both forms of therapy may be essential.
4
To refer to my personal experience here, at one point it was suggested to us by a medical practitioner that our son “ do a term of speech and then a term of OT” as if they were merely alternatives to each other. Clinicians in these two fields have distinctly different skills, offer different forms of therapy and address distinctly different aspects of impairment. The provision of these two essential forms of allied health therapy may need to be long-, rather than short term, particularly during the pre-school and primary school years. Supporting skill development and mastery in these different domains is likely to increase the sense of confidence and agency of children who might otherwise be at risk of mood disorders, and long term poor mental health outcomes.
A more proactive approach to the assessment and diagnosis of children with so called “mild-to moderate developmental delay” would be to institute routine assessment of all children during early childhood, as is currently done in several European countries. Rather than a focus on discrete diagnostic categories and categorization, the early assessment process can be used to identify developmental problems which can then be addressed by introduction of specific forms of age appropriate educational and clinical intervention. There is now substantial evidence that a focus on assessment and the provision of appropriate clinical & educational inputs is a more efficient use of resources, rather than a focus on premature diagnoses which may not remain valid as a child develops. Such a model of assessment and service provision focused on an early assessment of and response to individual children’s needs rather than too early diagnosis is the Essence program devised Gillberg Neuropsychiatry Centre would offer an ideal model which could be implemented by the Thriving Kids initiative. It is a model which has been subject to rigorous scientific scrutiny and has proven positive long term outcomes for children.
Such a model requires adequate and appropriate training and education of personnel employed to work with children. The upgrading of skills of staff particularly those employed to assist children with disabilities in mainstream settings, including kindergarten, child-care and primary schools should be a component of the Thriving Kids initiative. In relation to children with ASD, employing staff, particularly “teacher’s aides” without adequate knowledge of the underlying cognitive impairments which characterise ASD is likely to be counterproductive. Having the least skilled staff work with children with the most complex educational needs has been the norm across many settings in Australia. Addressing the need for improved training and education of staff who work with
5
children with developmental delays and disorders in mainstream settings ought to be a priority of the Thriving Kids initiative. Improving the knowledge base of non-clinical staff, i.e. teachers and teacher’s aides is likely to generate modes of instruction more closely linked to child’s needs and levels of development, in educational parlance : more “contingent” forms of instruction.
In conclusion, I believe that the Thriving Kids initiative offers an opportunity for Australia to become a world leader in providing positive outcomes for children with developmental delays and disorders. I think that the service delivery models which have been operational in recent years, have many favourable attributes as well as some shortcomings. By planning for success we can ensure better outcomes for children with developmental delays and disorders.
I am happy to contribute to the work of the inquiry should you wish me to do so.
Yours sincerely,
Dr. Maryrose Hall.