Note: there is commentary on this article at the end.
It seems odd in this belt-tightening age that the National Disability Insurance Scheme, one area of almost certain future overblown expenditure, seems to be isolated from scrutiny.
The principal problem with the NDIS will be the definition of disability. Many analysts fear a lack of precision in the definition may cause the scheme to blow out in ways never envisaged when a tiered scheme for the disabled was first mooted.
The most obvious example of this is autism, which accounts for 31 per cent of NDIS participants, the largest disability group in the scheme according to the NDIS quarterly report issued in June last year. Is this because of greater autism awareness and diagnosis of milder cases? Possibly, but there also has been steady growth in the number of families getting the carer allowance for children who are diagnosed with autism.
In 2012, A4, an advocacy group for the autistic, observed that at least one in 63 Australian schoolchildren had a formal autism diagnosis and was registered to receive the carer allowance (child).
There are two questions we have to ask: First, how prevalent is this condition and how truly disabling? Second, can we afford to define it as a disability into the future, given that the NDIS was originally envisaged as a support network for the profoundly disabled, including those profoundly disabled by autism.
The reason autism diagnosis has exploded is it is now seen as part of a spectrum of disorders, whereas it was once considered to be a rare and disabling condition.
For a long time it was not properly defined. Although generally thought to be neurological, rather than psychological, it has specific psychological and emotional hallmarks, in particular that children are non-communicative. Many autistic children never speak and are usually, in varying degrees, emotionally unresponsive.
However, since autism became part of a spectrum, the definition of what it actually is — and how disabling mild autism is — has been blurred even further.
This is not the first time the definition of disability has been a problem. The disability support pension was rorted because definitions and the ability to supervise recipients became lax across time. Within the area of child disability, the expansion of definitions of disability to encompass conditions such as asthma caused huge blowouts in the impost to the taxpayer.
Expanding definitions can sometimes be a good thing. Some rare disorders in children with disabling side effects are not always straightforward problems, with an initial clear diagnosis. Initially, the child disability allowance (actually, its predecessor) was hard to access too restricted. It was based on a rigid formula of time spent caring for the child. However, under the Keating government, the definitions for eligibility for the child disability assistance payment were expanded and across time definitions of disability started to become hazier.
Disability became less a physical or intellectual fact and more of a social handicap. All sorts of low-impact psychosocial problems became defined as disabling. Attention deficit hyperactivity disorder even made the list. Hence the numbers in receipt of the child disability assistance payment and the services that came with it increased, not just a bit but tenfold.
The explosion in autism spectrum disorder means the fledgling NDIS bureaucracy is faced with huge numbers of children with various psychosocial disorders, and vocal parents who are doctor-shopping for an autism diagnosis demanding early intervention and increased financial support for an often ill-defined behavioural problem under the cloak of disability simply so they can access extra help for their child. Ask any teacher and they will tell you that today it is rare not to have a child diagnosed “on the spectrum”.
In some places, as many as half the children in a classroom are considered to have some sort of psychosocial disorder.
The question of whether this is really such a problem is an open one. A small but growing number of health professionals and teachers are asking whether many children on the mild end of the spectrum are suffering development delay combined with inept parenting, in an age when most parents have hardly seen a baby before having one themselves.
In the US, a review of diagnostic practice was spurred by the sheer numbers of children who were considered to have autism. It was as high as one in every 68; in boys, one in 45. Consequently, people are asking whether ASD is the new ADHD.
This was posed by Enrico Gnaulati, a clinical psychologist based in California and author of several books on child psychology that have criticised the medicalisation of relatively normal “bad” behaviour, particularly in boys, as ADHD. In 2014, Gnaulati published a mildly controversial article in The Atlantic that questioned many of the criteria for diagnosis of ASD, pointing out that the push to diagnose children with some sort of developmental disease was often based on a misunderstanding of the different rates of developmental in boys and girls. Hence the rate of ASD in boys is even higher than girls.
Gnaulati doesn’t deny the existence of a spectrum but does think over-diagnosis is a problem. In all this, it should be remembered that parents of autistic children have difficult lives and they deserve all the support they can get. But we should be asking whether many of the children at the milder end of the spectrum are, in fact, suffering from emotional problems and psychologically stressed parents; and instead of looking to the disability route, perhaps parents of difficult children with reasonable intellectual capacity need to look more closely at their parenting practices.
It's fair to say that this article annoyed me. This is why ...
- the NDIS is definitely not isolated from scrutiny. It gets a lot of scrutiny ... often from people with little or no understanding of expertise in the area (as in this example).
- the NDIS trials have shown that the NDIS has a definition of disability (although the NDIA's criteria for "autism" remain gobbledygook ... for example, the NDIA expects just one severity level when the DSM-5 is very clear that a DSM-5 diagnosis has two separate severity levels). The estimate of the number of people eligible (meeting the definition) for the NDIS when the trial started was around 460,000. Note that this is significantly fewer than those who get the Disability Support Pension (~820,000) and the ABS's estimate of the number of Australians with severe or profound disability (about 746,000 <65 years old in 2015).
- the number of NDIS participants who are autistic surprised the NDIA; they expected far fewer. The number of people with ASD has been increasing ... but Ms Shanahan clearly has nothing to add on this issue.
- A4 has provided much more information than Ms Shanahan bothered to look up.
- Had Ms Shanahan investigated ASD prevalence in Australia, she would know there are much more important questions than her first question. Given that ABS data showed that in 2012, 73% of autistic people had severe or profound disability, her second question shows she really does not have an adequate understanding of ASD ... she should not be writing (well, no being published anyway) on the subject.
- She misunderstands "the spectrum": currently, ASD is a disorder (a single disorder) that has a spectrum of presentation. Previously, the DSM-IV and ICD-10 had a small spectrum of disorders (plural), so the "spectrum" view is not new. And the "explosion" was well underway before the "spectrum" terminology became dominant.
- She does not explain what she means by "[autism] was not properly defined". It is mostly regarded as neurological ... though the diagnostic criteria are behavioural. ASD is not regarded by anyone of significance as "psychological". Her belief that autism is psychological shows that this article should be regarded as "uninformed".
- Her claim that there is a "mild autism" shows very poor understanding ... all autism meeting DSM-5 criteria is a clinical disorder and needs support.
- Over years of Government effort to find rorting of the DSP, very little evidence of actual rorting has emerged ... it is far less common than rorting by politicians and bureaucrats.
- Ms Shanahan herself said that autism was regarded as a rare disorder ... the objects to families needing to get a second opinion when their GP or paediatrician does not have the expertise needed to diagnose it. She calls this "doctor shopping".
- Ms Shanahan does not seem to understand asthma or ADD/ADHD either. If she knew her stuff, she'd be asking why there hasn't been substantial diagnosis of Social (Pragmatic) Communication Disorder (SCD) since the publication of the DSM-5.
- Clearly there is a much bigger problem here with inept journalism than there is with "inept parenting". How many times has autism been blamed on parenting ... then it's been proven to be completely wrong. Ms Shanahan shows that she has very little knowledge of this subject area.
- It is very easy for journalists to say stuff like "In some places, as many as half the children in a classroom are considered to have some sort of psychosocial disorder" ... but it is meaningless. It is just unsupported claim and prejudice.
- Ms Shanahan cites Enrico Gnaulati ... but PubMed finds no relevant publication by this author. Plenty of people think ASD over-diagnosis is a problem, but the evidence says simply that they are wrong.