Autism diagnosis rules to change

THOUSANDS of children diagnosed with autism could lose access to thousands of dollars in federal support and other subsidies under changes planned for the manual of medical disorders used to guide psychiatrists worldwide.

Autism patient advocates say the first Australian research on the likely impact of the changes suggests 23 per cent of those who qualify as having a form of autism would no longer do so.

Many of those who fail the new test would be classified under a new diagnostic category, called "Social Communication Disorder" which, under current arrangements, would not qualify children for support under a federal government package introduced in 2008.

Several independent studies conducted in the US have found fewer children would qualify for an autism diagnosis under the new criteria, in contrast to field work done by the American Psychiatric Association which has predicted no such outcome.

The country's largest not-for-profit, autism-specific service provider, Autism Spectrum Australia (Aspect), which conducted the research, says the findings could hold dire implications for many families who, since 2008, have been able to access up to $12,000 in funds over at least two years to help provide speech therapy and other treatments for children who are diagnosed before the age of six.

Other elements of the scheme allow autistic children to receive Medicare-funded treatment from audiologists, occupational therapists, psychologists, speech pathologists and others, provided a treatment plan has been drawn up by the time the child is 13.

Clinical psychologist Vicki Gibbs, manager of Aspect's diagnostic assessment service, said the new definitions, contained in the fifth edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, were likely to come into effect shortly after the DSM-5 was published in May.

Aspect's study, the first of its kind to be done in Australia, compared how 132 Australian children diagnosed with autism would have fared had they been assessed under the DSM-5.

The results showed 23.5 per cent failed to meet the new criteria, which will require children exhibit at least five out of a possible seven symptoms, instead of three as at present.

"I think it's unlikely (changes) would be applied to people with an existing diagnosis, until they are going into a situation where they are asked for an updated diagnostic statement," Ms Gibbs told The Australian. "There could be some issue then."

Sydney mother Rachel Laidlaw has three children, all affected by an autism spectrum condition: 10-year-old Oscar, who was diagnosed in 2010 aged eight, and nine-year-old identical twins Max and Hugo.

Hugo was diagnosed last year with an autism-spectrum condition called Pervasive Development Disorder Not Otherwise Specified.

Max was the only one of the three to qualify for the federal assistance program, as he was diagnosed when he was nearly four.

As a result of the diagnosis, he received weekly speech therapy sessions that taught him, for the first time, the skills that enabled him to hold a conversation.

"If families stop getting the support they need, that's going to make a huge difference -- and it will make a huge difference at school, because teachers need to know what the issues are so they can teach them," Ms Laidlaw said.

A spokeswoman for Families and Community Services Minister Jenny Macklin said it was up to health professionals to decide what tools and criteria to use in diagnosing autism in Australia, and support for children with autism was "based on the best advice from Australian health experts".



looking deeper into autism data

While people are concerned that around 25% of people currently diagnosed with "autism" may not qualify under proposed new criteria, we may be able to better understand the issues if we understand the existing situation better.

A report from the Australian Bureau of Statistics (ABS) showed that in 2009 74% of people with "autism" had severe or profound disability ... so 26% of people identified as having "autism" were less-than-severely disabled by their "autism" according to the ABS's measure (see

This is similar level to 23% who currently meet DSM-IV "autism" criteria but may not meet the criteria for diagnosing Autism Spectrum Disorder proposed in the DSM-V ... as indicated in Aspect's report.

The DSM-IV says Pervasive Developmental Disorders (PDD, the category that includes "autism") involve "severe and pervasive impairment" ... so perhaps some people currently are given an "autism" label when they don't actually meet the severity criteria indicated in the DSM-IV.

In 2009, the number of children aged 0-16 years whose families get Carer Allowance for their Autistic Disorder or Asperger's Disorder in also about 25% lower than the prevalence suggested through the ABS Survey of Disability, Ageing and Carers, so perhaps some people get an "autism" label but their clinicians don't sign off for Centrelink because they don't regard the diagnosis as severe enough. Note: in 2003, the ABS survey indicated 13% of people with "autism" did not have severe or profound disability ... but the number of children reported as having "autism" more than doubled from 2003 to 2009, so most of the growth in "autism" numbers in Australia still involves "severe and profound autism".

Maybe the proposed DSM-V criteria will set a clearer and more appropriate cut off for this Axis-I clinical disorder. And maybe the new "Social Communication Disorder" label is a better description for most people in that 23% who may not meet the full criteria for Autism Spectrum Disorder as proposed in the current DSM-V draft.

The big question is "how do we find out whether the whole scheme proposed in the DSM-V will work better or not?" ... or will we just have to suck it and see?

Data??? + Australia is not bound by the DSM

ABS statistics are only as good as the methodology applied. When were you last asked to be included in data for Autism? How were your (or your family member's) levels of functioning defined in the data? What criteria and language did they use? How did you and/or data collectors define the term "autism" - as Autistic Disorder/Kanner's Syndrome, Rett's, DCD, only?

How do they collect data on those who remain undiagnosed/misdiagnosed? On those who cannot afford a diagnosis or refuse it due to stigma? What questions did data collectors ask? Were you able to fully represent your language, cognitive, social, and communication challenges, as well as any comorbid conditions? Did ABS compare Autism quality of life, education levels, income levels etc to the general population?

Does mobility (ABS variable) tell us how much depression, anxiety, suicide, bullying, divorce, or substance abuse is in the higher functioning Autism population, for example? How much do self-rated communication scores tell us if people with autism tend to socially self-isolate themselves and engage in "safe" communication? What does self care mean? Did they include holding down a job? Staying in education? Representing yourself in healthcare? Caring for your family? Seems like a loaded set of data to me.

Selective data tells us nothing.

No-one has to "suck it and see" - those who seek a diagnosis only need to ask one question when making the appointment: "Do you subscribe to the American DSM, to which Australia is not a signatory, or do you apply the ICD 10 and a comprehensive battery of tests?"

If the answer favours the latter - go for it, because the ICD is recognised in Australia. The DSM only applies in USA - people have been misled into thinking otherwise. If the answer favours the former, find a better practitioner who knows why this question is critically important. If they know the difference it indicates they are probably intelligent and informed, as opposed to sheep-like followers who fail to up-date their knowledge and likely couldn't care less. Who do you want to spend your money on? Do you want second-rate service and possibly end up spending more for a second or third opinion?

The DSM 5 fails to address crucial components of autism, including sensory challenges and criteria/presentation for females. The ICD does not address these either, but you have a better chance of getting a more accurate diagnosis. The only realistic aspect of DSM 5 is, I suppose, that it finally acknowledges that higher functioning conditions (e.g. Asperger's) actually do have a high prevalence of language challenges, as opposed to the highly misinterpreted DSM IV-TR. Lack of language delay has always been misapplied as "no language disorders".

It's your money and time - use it wisely and reward those practitioners who are knowledgeable about Autism. It's time people started asking intelligent questions and demanding accountability.

problem with DSM-V autism/ASD proposal need to be fixed

The DSM-V categories for Autism Spectrum Disorder should not be "mild, moderate and severe", perhaps they should be "severe, profound and extreme" instead. While this is "how it has always been" in the DSMs, it is poor "science communication", so it should be improved.

I expect the Government will avoid funding "mild autism/ASD" which is really "severe ASD", or even "moderate autism" which is really "profound ASD". So far, no one seems concerned by this aspect of the changes proposed in the DSM-V.

There is no doubt that managers, bureaucrats, administrators and politicians will use these descriptions to deny services and support to people with severe or profound disability.

DSM-5 - its being fought in USA

DSM-5 is being actively fought by The Global and Regional Asperger Syndrome Partnership (GRASP) at who have joined with all their members and families to take on the team who are trying to make the changes to the Asperger diagnosis. For Americans it means loss of support funding and insurance issues. Have a look at the site and there is a petition to sign there too.