Autism, driving, and changes to British notification rules

Last weekend, by chance, some of us found out that people with autism spectrum disorders (principally Asperger’s syndrome) and Attention Deficit Hyperactivity Disorder (ADHD) were required to notify the DVLA (Driver and Vehicle Licensing Agency) of their condition, something they had not been previously required to do unless it affected their driving. This guidance appeared to have been issued recently without any consultation or indeed any notification, leaving many of us worried that we would have to choose between risking incurring large fines by not notifying or insurance refusals or dealing with both bureaucrats and medical professionals who are either ignorant of our condition or influenced by prejudice. People I follow online who know about autism are horrified and regarded this as both discriminatory and based on ignorance. There seemed to be evidence that the DVLA did not know what they are doing, and different people who have approached the DVLA had different responses. (The guidance was reverted while I was writing this article, though people who had alerted the DVLA to their situation are still being expected to notify and being threatened with losing their licence if they do not, and the matter is likely to still be under consideration.)

A boarded-up, two-storey, red-brick building with concrete blocks and metal fencing in front of it. In the foreground is a blue sign that says "Welcome to Roselands Clinic", and above it, on a white background, the logos "Your Healthcare, providing services for the NHS" and "Kingston NHS Primary Care Trust".
Roselands Clinic, New Malden, where my diagnosis took place.

For one thing, the form people are expected to use to notify the DVLA (the M1 form, available in PDF form here) is outdated and geared towards conditions which dictate regular medical attention, which this does not. It asks you to state your GP’s name and address, and your consultant’s name and address and the last time you saw them for this condition. The problem is that not everyone has seen the consultant who diagnosed them since the day of diagnosis; after this is done, people are usually referred to services such as those which help with finding employment and securing benefits, if they are available, which is the reason many of us sought a diagnosis (or why our relatives encouraged us to do so). Does a consultant mean only a medical consultant, or will a consultant psychologist (such as the one who diagnosed me) do? The consultant may have moved on, as mine did in 2017, and the clinic in question closed, as mine (pictured) has been. The form assumes we have a single GP; this has not been the case for many of us for many years, as we are registered with large clinics and see whichever GP is available, which may change from appointment to appointment. The form should really be updated to take this into account.

Different people who approached the DVLA had different responses. One person on Twitter said that their son’s condition had been notified to the DVLA by the police last year, but they were not interested. Another person who contacted the DVLA was also told that people who had been driving for years before their diagnosis without incident were of no interest to them. Yet others who contacted the DVLA by phone were told that their phone-call had ‘flagged’ them and they should therefore get their M1 form in within two weeks. However, we do not yet know what they will do with the form and many of us are worried about over-reaction or prejudice, particularly those (like me) who drive for a living or could not get to work without our cars (or motorcycles) because of where we live or work. In 2016, an investigation by the Parliamentary and Health Service Ombudsman (PHSO) found that disabled people and those with various medical conditions were being refused licences or having their licence restorations delayed for unacceptably and unnecessarily long periods, sometimes leading to them losing their jobs or businesses. People I know who, for example, had seizures on one occasion while ill were kept waiting years to have their licences restored, simply becuase the DVLA did not know what to do. This is a new issue; how do we know that we will not suffer the same treatment despite having driven without incident for years before diagnosis?

An image which reads:

The DVLA Autism Test, Explained

(Picture of young woman holding L-plate.) Here is Sam. Sam is autistic. Sam has been autistic all of their life.
Sam took driving lessons while autistic.
Sam took a theory test and passed it.
Sam took a practical driving test and passed it.
This is Sam as a safe, qualified driver, driving for years afterwards.

(Picture of a middle-aged woman in a flourescent yellow jacket, holding a clipboard.) This is a highly experienced Driving Examiner. They test every element of a driver's safety. If someone is not safe, they don't pass them.

(Picture of a man in late middle age with a stethoscope round his neck.) This is a Doctor. The DVLA want the Doctor to say if Sam is a good driver. The DVLA do not believe the Driving Examiner. The DVLA do not want to know if Sam is already a safe, good driver with years of experience.
The Doctor has never seen Sam drive.
The Doctor does not know if Sam is a good driver.
The Doctor has hundreds of actual patients to see, and is already overworked. The Doctor is not happy.

The National Autistic Society made an inquiry with the DVLA who told them that previous guidance had been wrong and that autism had always been a notifiable condition; the NAS say they believe that this guidance should be changed as they “don’t believe that the DVLA guidance reflects the potential impact of autism on driving properly”. An autistic blogger named Kat Williams contacted the DVLA and was passed from pillar to post while on the phone (see thread) but got a call back from a manager who told them that it was the General Medical Council who told them that all autistic drivers needed to be “looked into” (she has put in a Freedom of Information request for clarification on this). There was also suspicion voiced that this was an information gathering exercise prompted by the Department for Work and Pensions, seeking to find out who was claiming disability benefits and free public transport passes (which were issued to people with ASDs in some districts, including mine, until recently) when they could drive.

The NAS advised that people should notify, but again, there was no guarantee that the disclosure will be dealt with appropriately and the DVLA’s website really does not give much reassurance. They tell us that they might contact our GP or consultant, arrange for us to be examined, or expect us to take a further driving assessment; we really need more specific information on what they will do with a disclosure of an autism diagnosis. Again, some of us have not seen our consultant for years, but many GPs are not well-trained on autism and even psychiatrists, as many an inpatient with an ASD has discovered to their cost, are often woefully ignorant of the subject. (When I saw one of the GPs at my clinic to ask for referral for diagnosis, he left the request on his desk for months until I called to remind him!) And as has been noted, doctors who have plenty of patients to see will not be happy about having these requests dumped on them when they have never seen the individuals driving. The DVLA do, after all, already have driving examiners for this and the people concerned have already passed their tests (often more than one test, if they are bus or truck drivers).

As it happened, the DVLA today reverted the guidance on their website to its previous wording: “You must tell DVLA if your autistic spectrum disorder (ASD) affects your ability to drive safely”. Had they not done this, I would have waited for reports from other drivers who notified the DVLA about this issue before I did so myself. I currently have no other way of making a living and have been driving without any serious incident since 1995, have passed three driving tests and a HIAB (loading crane) equipment operation course, have held a Certificate of Professional Competency (CQC) since 2014 (when it became compulsory) and have no personal doubts about being safe to drive. I have no confidence that the DVLA would handle my disclosure appropriately and would have waited to hear exactly what their criteria are for allowing a person with a diagnosed autistic spectrum disorder to drive or continue driving.

I do have a suspicion that this is the result of Asperger’s syndrome being merged with autism in the recent diagnostic manual or DSM, something that many disability activists supported; they called the opponents of this change such insults as “Aspie snobs”. The reason was that the main criteria for the distinction of Asperger’s syndrome was that someone’s speech was not delayed; without that identifier, someone would always have been diagnosed with autism, not Asperger’s syndrome. It’s true that the name has fallen out of favour since it was discovered that Johann Asperger was a more committed Nazi than had previously been thought. However, as autism is generally considered a severe disability while Asperger’s syndrome was not, I feared that people previously diagnosed with Asperger’s syndrome would be subject to the same legal and official disabilities as those with more severe autism, such as being refused the right to settle in another country on the grounds of being a potential “drain on the system”. If this is the reason, my fears about this have been confirmed, and people are likely to be subjected to unnecessary hardships and scrutiny because their condition is no longer considered distinct from a similar but more severe one. As a community, we should think very carefully before welcoming or celebrating such changes in future.

(It is, of course, true that there are often co-morbid mental health issues with autism and some autistic people have required mental health treatment for these or for the after-effects of trauma. However, these conditions have names and are diagnoses in their own right; autism on its own is not a psychiatric disorder and should not be treated as such.)

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