Selling self-diagnosis

As I’m scrolling through Instagram, my eye is caught. Soft-focus branches move in the wind, gentle music plays, and text appears.

You’ve spent years wondering why life is so much harder for you than everyone else. You’ve been told you’re too much, too intense, too sensitive…

The problem isn’t that you’re broken, it’s that you’ve spent years trying to navigate a world not designed with you in mind. 

Understanding yourself differently is the start of a better way to live. 

It’s been shared hundreds of times and there are several thousand likes. The comments say things like “OMG I feel seen!” and “I never realised this was autism!”.  Intrigued, I look again. The account is a private provider of autism and ADHD assessments. “Understanding yourself differently” means an assessment for autism, ADHD, or perhaps both. 

ADHD and autism diagnostic assessments are big business. The recent Fonagy report revealed that half of ADHD assessments and a third of autism assessments funded by the NHS are now carried out by private providers under Right to Choose. That sits alongside a burgeoning private sector. Alongside this has gone direct-to-consumer advertising – on social media, but also in car parks, city centres and on buses. 

We are not used to seeing health care advertised on billboards. In the UK, direct-to-consumer advertising of medication is against the law, unlike in the US. But while it’s illegal to advertise drugs, it is completely legal to advertise diagnostic assessments.

Advertising healthcare brings up complex social issues. Marketing is never just neutral information sharing or awareness raising: marketing aims to convince people to buy a product that they might not have considered before. It therefore has the potential to create, as well as fill, a need. 

When the product is autism and ADHD assessments, this means convincing more people that perhaps they — or their children — have a neurodevelopmental disorder.  Experiences which they might have previously thought of as just part of life are reframed as symptoms of autism or ADHD.  A way to understand themselves, as that Instagram reel promised.

In order to expand the market for their products, companies widen diagnostic boundaries into everyday life experiences, expanding the parameters of the disease

This process is not a new one, and it’s not unique to autism and ADHD. Researchers have noticed for decades that companies who market healthcare to the general public sometimes do this through ‘“disease-mongering”.  In order to expand the market for their products, companies widen diagnostic boundaries into everyday life experiences, expanding the parameters of the disease. The result is the medicalisation of everyday life and an increase in demand for healthcare. In the US, this cost is met by insurance. In the UK, it’s largely met by the NHS.

Autism and ADHD are perhaps particularly vulnerable to this process. These diagnostic categories have undergone expansion over the last few decades, morphing from diagnoses given to severely disabled children to diagnoses given to highly successful adults. They are descriptive diagnoses, with no biomarkers. This makes them different to most physical health diagnoses. Descriptive diagnoses give a name to a collection of symptoms, but don’t tell us why something is happening. 

To understanding the difference, think of the early days of the COVID-19 pandemic. In those first few months, the only way to diagnose covid was descriptive. We were all told to look out for a cough, a fever or a loss of our sense of smell. We become highly vigilant of symptoms.

Then scientists developed biological tests. Then, it didn’t matter if we had all the symptoms of COVID-19; if we weren’t carrying the virus, then it wasn’t it. It didn’t even matter if we had no symptoms at all; if we were carrying the virus, then we had it. The biological test made the diagnosis. 

This hasn’t happened for autism and ADHD and it will not happen. That’s because these diagnostic categories are vast and amorphous. The more closely researchers look, the more heterogeneity between people they find. There is no evidence that everyone with autism (or ADHD) shares a common biological profile. In fact, there’s quite a lot of evidence that they don’t. The thresholds for diagnosis are subjective and subject to change. 

This doesn’t stop the marketing. These diagnostic assessments are promoted as if they were something akin to a spiritual experience. Suddenly, they promise, your whole life will make sense. You will be able to forgive yourself for your transgressions and treat yourself with compassion. These narratives are picked up by the mainstream press, with personal articles claiming that a neurodevelopmental diagnosis can be magical or a rebirth.  Then there are the social benefits, with many children being told they cannot get help at school without a diagnosis.

It’s hardly surprising that under such circumstances, demand for diagnostic assessments is rising. Who wouldn’t want a diagnosis that could deliver such a transformation? 

I’ve heard of children being given ADHD diagnoses in a 45-minute appointment with a nurse, and autism assessments done in an hour

Demand creates waiting lists, with people waiting years across the country. Once they get to the top the profit motive and the sheer number of people incentivise providers to carry out the assessments as cheaply and quickly as possible. I’ve heard of children being given ADHD diagnoses in a 45-minute appointment with a nurse, and autism assessments done in an hour. Diagnoses like these are lifelong and there is currently no way to remove them in the UK.  

People do not typically wait for several years hoping not to be given a diagnosis, and so everyone knows what the desired outcome is.  Some businesses advertise themselves as “neuro-affirming” which appears to mean that they will agree with a person’s self-evaluation – or as some put it, collaborative identification. The incentives are always to give diagnoses, because dissatisfied customers may leave negative reviews or make complaints. 

These diagnoses were never designed as tools of personal development. Making sense of your life through the psychiatric system is an uncertain process, and permanent diagnoses should only be given when it’s clear that the benefits outweigh the potential harm. Otherwise, we risk overdiagnosis.  

It’s time for a reset. We need to see the waiting lists as the inevitable result of a culture where neurodevelopmental diagnoses are being promoted as the answer to everything. They have burst the banks of the psychiatric manuals, and have become something new. It will not be enough to regulate advertising; it is the over-expansive nature of the diagnoses themselves that have made this possible.

Clinicians and researchers need to push back against the tide of medicalisation and refocus services on those who need them most. We should be able to appreciate and validate difference without seeing it through the lens of psychiatry. Access to services should be determined by need, not by a diagnosis.