Thousands of autistic drivers could find their Australian licences are in legal limbo due to changes quietly made last year to the national standards that govern who is considered fit to drive.
The national 2022 Assessing Fitness to Drive standards are the first to list autism as a condition that "should be assessed individually", which may involve a practical assessment.
For drivers diagnosed in later life, years after earning a full licence, the changes could have a huge impact on their ability to get to work, care for their children and go about daily living.
Barb, who lives in regional Queensland, was diagnosed with autism and ADHD six weeks before her 40th birthday in 2009. She says it was "life-changing" as she'd always felt different and alienated.
She got a motorbike licence at age 18, a car licence at 30 and has never had a speeding ticket or a parking fine. Going for a drive has always offered her a sense of freedom when life got tough and helped reduce her anxiety and depression.
But now, like other autistic drivers, the legal status of her licence is precarious. Barb, who didn't want to use her full name, only found out about the change when she spoke to ABC News. This is despite a Department of Transport and Main Roads spokesperson saying all autistic drivers in Queensland have since 2012 been required to obtain a medical clearance from a doctor to show they are fit to drive.
"It's pretty discriminatory as well, looking at this and devaluing us [people with autism] as to what our capabilities are based on, you know, a diagnosis," she said.
'Stigmatising and bizarre'
The standards state autistic people may struggle with "managing attention and distraction, understanding non-verbal communication from other drivers, planning and organisation of the driving task and adapting to unexpected change, sensory sensitivities (e.g. glare and sound), emotional regulation and input overload, repetitive behaviours such as rocking or hand flapping".
Victorian Ro Bersten was diagnosed with autism and ADHD at age 43. The managing director of the charity Intertwine has been driving since about 1987 and says the new standard is "stigmatising" and "bizarre".
Ro Bersten says the new standards are "discriminatory".(Supplied: Ro Bersten)
"To pass a driver's test, there are practical items that are checked off, and you've either done them or you haven't. So it shouldn't matter what the neurotype of the tester or the participant is — because you either have passed the test or you haven't passed the test," said Ro, who uses xe/xyr pronouns.
As a Victorian, Ro isn't required to automatically inform VicRoads about xyr diagnosis. But all Victorian drivers are required to self-report any long-term health condition or disability that has an impact on their ability to drive safely.
Ro says the AFTD 2022 standards are "discriminatory" and create additional burdens for disabled people, particularly for those seeking a diagnosis late in life.
"Were it to become more broadly advertised or more strictly enforced, I think that this sort of threat to remove licences or threat to make the hurdle to retain licences more complicated, would discourage people from seeking autism diagnoses as older people," xe said.
GPs aren't confident in judging an autistic patient's driving and will request a formal assessment, occupational therapists said.(Supplied: Jennifer Gribbin)
Different rules in each state and territory
The Assessing Fitness to Drive (AFTD) guidelines are updated every few years and cover a range of medical conditions such as diabetes, epilepsy, vision and eye disorders. They are written for health professionals who treat people with conditions that will have an impact on their driving.
The guidelines are developed by Austroads, the association of Australian and New Zealand transport agencies in conjunction with the National Transport Commission (NTC), as well as medical bodies and advisory groups.
While the standards are national, there are different interpretations of these guidelines in each state and territory.
What are the rules in your state?
In all states and territories, disclosure requires the driver to fill out a form, often with details from their GP. An occupational therapy driving assessor may then assess the driver, conditions could be placed in the licence.
In Queensland, the Department of Transport and Main Roads (TMR) requires drivers to obtain a medical clearance form from a doctor confirming they are fit to drive despite being autistic. Failure to do so can result in a $9,288 fine and cancellation of licence.
In Western Australia, a spokesperson for the Department of Transport said that as drivers are required to report any health condition that will have an impact on their driving, "autism should be disclosed". Failure to inform the department of a condition that is likely to impair driving can result in a $500 fine.
In Victoria, drivers, including learners and P-platers, are required to self-report any long term health condition or disability that has an impact on their ability to drive safely.
In New South Wales, autistic drivers aren't required to inform Transport for NSW of their diagnosis, but anyone with a long-term health condition,which may include autism, that affects safe driving is required to self report.
In South Australia, autistic drivers aren't required to automatically disclose their diagnosis but they are required to report any health condition that may impact their ability to drive.
In the Northern Territory, only drivers with a disability or health condition which affects their driving are required to inform the Registrar of Motor Vehicles.
In both the NT and SA, health professionals have a mandatory obligation to report drivers they deem medically unfit to drive to either the Registrar of Motor Vehicles or the Department for Infrastructure and Transport.
In Tasmania, drivers are legally required to report any long-term health condition they have that might impact their driving.
In the Australian Capital Territory, all drivers are legally required to report any long-term health condition or disability that may impair their ability to drive to Access Canberra.
Health consultant Fiona Landgren, who has worked on the standards for 20 years, said the 2022 edition regarding autism is designed to help health professionals "manage people on the spectrum". She is also developing a training module for GPs to assist them in assessing patients for fitness to drive.
"There's limited insight and so [autistic] people might not actually be aware that they're impaired. But they're likely to be seeing a health professional who should be bearing in mind the driving safety," she said.
Ms Landgren added many drivers with health conditions listed in the AFTD were unaware of their obligation to self-report.
Occupational therapist Jennifer Gribbin is often the first person to tell an autistic learner driver and their parents about the change.(Supplied)
In 2019, similar changes were brought in by the UK's Driver and Vehicle Licensing Agency, requiring autistic drivers to disclose their diagnosis or risk a fine of 1,000 pounds and possible legal action, but they were quickly reversed.
Occupational therapy driver assessor Jennifer Gribbin said she's often the first person to tell an autistic young person and their family about the AFTD changes, which in Queensland often means parents can't practise on the roads with their teens.
GPs regularly request an on-road assessment from an occupational therapy driver assessor, Ms Gribbin said, as they are not confident in assessing an autistic individual's driving.
"And a lot of GPs are often trying to balance that safety net risk, but also with their ongoing relationship with the patient, and they don't want to be the bad guy. Because they need to have that ongoing good relationship, to have that positive care for the patient," she said.
Depending on the experience of the driver, an occupational therapy driver assessment that involves several appointments, an on-road test and a written report costs around $1,500, according to Ms Gribbin. There are three possible outcomes of an assessment: pass, fail or driving rehab, which is typically 20 lessons at a cost of $130-$150 per session.
What do we know about autism and driving?
There are not many studies of autistic drivers and most focus on learner or inexperienced drivers.
A study published in the American Journal of Occupational Therapy in 2013 of 22 autistic and ADHD teens and 22 neurotypical teens who used driving simulators showed that the neurodivergent teens made more errors relating to visual scanning, speed regulation, lane maintenance and adjustment to stimuli than their neurotypical counterparts.
Dr Beth Cheal (left) is commonly asked to assess an autistic driver to justify NDIS funding for specialised lessons. (Supplied: Dr Beth Cheal )
The Assessing Fitness to Drive 2020-21 review, published by the NTC, noted that while autistic drivers tend to take longer to obtain a licence and studies showed "shortcomings in tactical skills", currently "there is not enough evidence to determine the MVC [motor vehicle crash] risk associated with ASD".
Clinical psychologist Professor Robyn Young describes autism as "a social condition" whereas "driving is very much a physical thing".
"So you know when someone's turning, they're putting an indicator on, you're not having to assume, 'Oh they're turning left here'. You're not having to read people's minds in order to be able to [drive], it's very physical and structured," Professor Young said.
Occupational therapist and driving instructor Dr Beth Cheal works with a range of autistic learner drivers. Many are wanting to use some of their NDIS funding on specialised lessons. Her clients range from parents who want an instructor who understands autism and won't shout at their teen to those who have higher support needs when it comes to driving.
Dr Cheal says autistic learner drivers often struggle with coordination and can have poor impulse control.
"Our clinical experience is that people with autism have trouble crossing the midline, which means they have trouble steering around corners, and with road positioning," she said.
"Sometimes they just randomly change lanes and you're like, 'I told you to turn left and you went into the right lane'. They have a lot of trouble if someone just toots the horn or with any negative feedback and they get very, very stressed and can just fall apart in the middle of an intersection."
Dr Cheal is commonly asked to assess a young autistic person for driving to justify NDIS funding for specialised driving lessons, yet many don't want to formally disclose their diagnosis.
Dr Beth Cheal said many of her clients don't want their autism diagnosis on their driving record.(Supplied; Dr Beth Cheal)
In Australia, an autism diagnosis includes support levels. Level one is some support required, level two is for substantial support needed and level three refers to those with very substantial support needs. NDIS funding is only guaranteed for those who have an autism diagnosis of level two or three.
"And a lot of people with that condition or their parents don't want the stigma of having that on their [driving] record," she said.
A spokesperson for Austroads said autistic drivers aren't required to automatically report their diagnosis, but the "overarching requirement is that a person with a condition that may impair safe driving will need to report and be assessed".
The National Transport Commission said that during the development of the 2022 AFTD, it "considered the need to include further information or consider medical standards for people with ASD".
"Specialist advice received noted that the variability of ASD characteristics and the degree of severity were too diverse for a specific standard," a spokesperson said.
"We appreciate and understand there is continuing development about how people with ASD are affected with respect to driving and future editions of the AFTD will address these issues."
from https://www.abc.net.au/news/2023-11-20/autism-driving-licences-new-standards/103108100