A new global autism diagnostic app from Idaho Credit: Image credit: hepingting via Flickr
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A new global autism diagnostic app from Idaho

When Ron Oberleitner’s third child, Robby, was born on 27th November 1992, he seemed like a normal little baby boy. Then at 13 months he started regressing - it took the family over two years to confirm the diagnosis of autism.

“The word [autism] was hardly known back then,” explains Oberleitner over the phone form Idaho. “There were only five people in our part of the country who could perform diagnosis and it took months to get an appointment.” Then, when he finally did get to meet someone, he was surprised by how low-high tech it all was compared to the equipment he dealt with routinely at work.

Back then Oberleitner was an executive at a medical device company and it seemed clear to him that the autism community was missing out on a range of tools widely available for most other conditions. To counteract this he says, “we started a non-profit research effort,” which trialled different forms of video communication between children and health workers. Based on the success of the initial pilot, he sought and gained government funding.

This was the start of a “long journey” to finding better ways to connect health workers with children on the autism spectrum, he explains. It led to the formation of Behavior Imaging, which offers a wide variety of tools in this arena. And now the company is finally coming to market with a new, commercially available, autism diagnostic app for ordinary people via smartphone. 

The Naturalistic Observation Assessment (NODA) app allows parents to record four 10-minute videos of their child’s behaviour and upload them to a secure HIPAA-compliant web platform. Here, health practitioners can review the material and tag behaviour according to the latest DSM guidelines. DSM, ‘The Diagnostic and Statistical Manual of Mental Disorders’, provides a checklist of physical symptoms and forms the bible of clinical diagnosis.

This app sounds like an excellent tool but I must admit I was a little sceptical. Firstly, the incidences of childhood autism are rising so rapidly it has become endemic in the US. According to the Autism Society US rates have risen by “119.4 percent from 2000 (1 in 150) to 2010 (1 in 68)”. This alone is suspicious in a country where health care is a commercial operation. Secondly, I was uncertain of the merits of yet another smartphone app which claims to deliver something clinical – especially in such a contentious and politicised area as autism diagnosis.  

My first point is certainly not unfounded and there has been some very real, general criticism of the DSM guidelines. In fact, the whole notion of prescribed checklists to diagnose conditions can be seen as problematic, as Jon Ronson’s 2002 book The Psychopath Test rather wittily details (there is even a section on the formation of this manual). Yet beyond this fundamental concern, many people are unsure about the way DSM wraps a variety of conditions – including Asperger’s Syndrome - under the big banner of ASD (Autism Spectrum Disorder). This is because people with Asperger’s function normally, but tend to have issues with social conventions, whilst other individuals on the spectrum may be totally disabled. 

Oberleitner acknowledges this can be difficult. He has attended events with his “non-verbal” son who is “really disabled” and needs “constant supervision” yet is diagnosed with the same condition as individuals who are functioning almost normally. One child may “need help to speak” he says, while another may need help to “be socially appropriate”.

However, as he strongly puts it “both families are coming for a diagnosis because they’re concerned”. There is no malicious intent and no benefit in a misdiagnosis, ultimately ASD children and their families just need all the tools possible to enable them to function in society.

When I ask Oberleitner what he thinks about the rise in cases of Autism he says he believes “both the level of autism is increasing” and that as more people are recognising it as a condition, this in turn is “increasing the numbers of children being diagnosed”. Interestingly, this is a global problem, and he says he has received a lot of enquires about the NODA app from across the globe.

Oberleitner pre-empts my questions about the effectiveness of the app as a diagnostic tool by supplying me with a research paper comparing the “remote diagnosis” (i.e., via video) of ASD to the “gold-standard of in-person diagnosis”. This shows that based on a small sample of 44 children who have completed the NODA app assessment, the same in-person diagnostic decision was reached in 86.42% of cases. This sounds like a pretty decent statistic but does mean that out of the small number tested six diagnoses did not tally.

The paper reached the overall conclusion that: “NODA results in a valid diagnosis of ASD in 80% of cases. Approximately 20% of cases may still require an in-person evaluation”.

Yet accuracy aside, the real benefits of this app appear to arise from increased speed of diagnosis, reduced cost in seeking an outside opinion and the fact that health professionals can tag notes directly next to videos. This shows everyone exactly what is going on and, as many parents will be reluctant to accept there is anything wrong with their child, seems to be an invaluable first step for concerned families.

The truth is, however you view the reasons for the rise of autism amongst today’s children, it is definitely a growing problem and does appear to be here to stay. As Oberleitner puts it “the incidence is increasing and soon pretty much every adult in the world is going to know someone [with the condition]”. On top of this, these individuals are going to need help to coping throughout their lives: from initial diagnosis, through schooling, through to finding their place in the world.

“I think properly supported adults with autism are reliable and have a great work ethic,” says Oberleitner about this group’s ability to find employment as an adult. “Our community brings a broad range of skills. They just need the right sort of support so they don’t fall through the cracks”.

This can be facilitated by IT on a number of levels. Social media is already helping children and adults with ASD socialise remotely and there have even been some initial forays into using Second Life as a platform to help them ‘attend’ work without having to cope with the rigours of the office life.

IT companies like SAP and Microsoft – which has just introduced a new pilot initiative – are helping people with autism find work.  And there is even a specialist recruitment company, Specialisterne, which was launched because the founder, Thorkil Sonne [excellent profile in the New York Times in 2012] noticed the unique skillset in his autistic son.

Autism, as a condition, is difficult for parents, health professionals and ordinary people to understand. This is partly because these individuals have trouble communicating but also because the spectrum itself is so wide and diverse. To my mind this means anything that helps make ADS easier to diagnose – and easier for individuals and families to cope with – can only be a good thing. 

 

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Kathryn Cave

Editor at IDG Connect

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