Autism and the importance of accurate diagnoses

Morgan Liotta

22/01/2021 3:12:14 PM

Despite the progress being made, a lack of time, appropriate resources and funding continues to contribute to inaccurate diagnoses of autism.

Woman engaging with young girl
Experts are calling for a more unified approach to screening for autism.

A range of evidence points to the benefits of a formal assessment and early diagnosis of autism, followed by appropriate intervention strategies, in facilitating ideal developmental outcomes for people with autism.
The National Disability Insurance Scheme (NDIS) was implemented to help fund and best support access to appropriate care for people with disability, including those with a diagnosis of autism.
However, the scheme has been plagued with issues for both people accessing the scheme and the healthcare providers supporting them.
Despite ongoing reviews to the NDIS, as well as new guidelines and diagnostics tools advancing access pathways, experts say there are still challenges, including a shortfall of qualified clinical teams who can diagnose autism.
A recent Flinders University study examined the effectiveness of autism diagnosis in early childhood.
The authors identified the importance of understanding how screening efficacy is dependent on the development of appropriate screening tests, as well as the ability to negotiate the ‘complex organisational systems’ within which screening procedures must be implemented.
Study author Professor Robyn Young said that insufficient time, money and resources also contributes to inaccurate diagnoses.
‘I doubt that thorough testing is seen as financially viable,’ she said. ‘To undertake a thorough assessment, you really need at least three hours – and for adults who may have trauma or comorbidities, it is even harder.
‘The NDIS is putting restrictions on from whom they will accept diagnoses, and in some incidences, even though psychologists have undertaken approved diagnostic training, they are asking for the diagnosis to be endorsed by a clinical psychologist – of whom there are shortages with expertise in this field.’
Dr James Best is a GP with a special interest in autism and Chair of the RACGP Specific Interests Child and Young Person’s Health network.
He agrees that there have been ongoing issues for people with autism accessing the NDIS, but some resolution is now underway with actions to try and rectify them.
‘This has always been the problem. Not only does [a thorough assessment of autism] take a long time and is costly, there are limited teams who can actually do it,’ he told newsGP.
‘This problem is partly what led to the blown-out waiting list on the NDIS – and what has led to the change in the NDIS of the independent assessor process.
‘Now we will transition from what was a fairly difficult access process where people had to spend money or wait for a very long time in order to get assessments required to get a functional assessment done – which led to inequity in terms of access.’
While the transition to an independent assessor process by the NDIS is a welcome move, Dr Best said it is somewhat of a double-edged sword.
‘It is going to improve access, because for people getting the assessment done it will be free, funded by the NDIS. But also there are concerns about the quality of the assessment and the true independence of the assessment,’ he said.
‘So the upside is that it will hopefully address that inequity that has been there since the NDIS’ inception, but the downside is it does have potential areas of conflict of interest, as well as a potential lack of expertise in terms of assessment process.
‘We need to be very careful about where this new process goes, that we maintain that independence of assessment and that there is not a cost-cutting aspect to the process.’

Dr James Best welcomes NDIS changes that give GPs more of a voice in the autism assessment process.

According to Dr Best, one of the most positive things to come from the changes is that GPs’ role is now a significant part of the process – for which the RACGP has long called for.
‘[Previously] we have been largely excluded from the NDIS, and now we can actually do an Access Request Form,’ he said.
‘So just like we do for a disability pension, for example, GPs can now submit a functional assessment on our own patient, as part of that process.
‘That is a positive step forward – that GPs now have a potential voice if we so choose, or if families or individual patients choose.’
Study author Professor Young said that for those involved in the assessment process, it is important to understand how autism presents and how this may vary with development.
‘We need to understand the constraints placed upon people that either prevent or enable diagnoses and intervention,’ she said.
‘If we can identify the behaviours early, and the impact these behaviours have on development, then we can target intervention more efficiently.
‘Not only will this enable people to get adequate support, it may prevent older people seeking diagnoses who have experienced a life of misdiagnoses and confusion.’
Recognising these barriers is part of the improvement process, Dr Best said.
‘There are issues, and those issues are valid, but also we need to come back to the principles that we want to make screening as available and accessible as possible, in order to get early diagnosis, which is the name of the game,’ he said.
‘It’s just process – we always want to be developing our tools better to make them more accurate, more accessible, reliable and independent. So we always like heading in that direction.
‘But we don’t want to chuck the baby out with the bath water ­– what we have is evolving and we want to improve it more.’
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Dr Henry Arthur Berenson   26/01/2021 1:52:45 PM

NDIS resources should be distributed on the basis of need determined by the degree of incapacity, not a label that costs up to $3000 to obtain from an elite group of providers.