My doctor diagnosed me with ADHD – so how did my phone find out?

At my most vulnerable, targeted ads started selling me services that could help manage my symptoms – for a price. The law must offer more protection

After I was diagnosed with attention deficit hyperactivity disorder (ADHD) in 2022, I started following Instagram accounts that could help me understand the condition. Reels and memes about being neurodivergent started to fill my feed, along with tips on how to manage ADHD in a relationship and other helpful advice. But within days, something else happened: my phone found out about my diagnosis.

All of a sudden, I was being served with ads for apps that claimed they could help me to manage my symptoms. There were quizzes to determine what type of ADHD I had: was I predominantly inattentive or impulsive, one asked. Did I definitely have it? Find out by taking this diagnostic test, another promised.

I filled out an online quiz from one of these companies and got an ADHD score of 43 out of 63 – whatever that meant. If I wanted to find out, I needed to open the “personal management plan” that had arrived in my inbox and would apparently give me unique insights into my challenges and help me to better manage my symptoms. But I would need to pay 26p a day. I chose not to sign up, but over the following weeks I received a further 15 messages, each trying to lure me into purchasing the plan with growing discounts – 60% off at first, then 75%.

Companies can use social media to personalise their interactions with consumers like never before. In my case, I hadn’t even spent much time Googling ADHD, but suddenly nearly all my Instagram ads were about it. Freshly diagnosed, my phone seemed to know more about me at that stage than my friends and family.

The law around this kind of advertising is somewhat murky, according to Johann Laux, a postdoctoral fellow at the Oxford Internet Institute. In the UK, it is against the law to advertise prescription-only drugs to consumers. But there is no such restriction on advertising over-the-counter medical products.

Laux said there could be privacy concerns to this kind of targeted advertising, as health data is a special category and companies need explicit consent to access it. But no one was rummaging through my health records – the company had been able to infer my health status from my search terms.

Consumer law protects vulnerable consumers in their economic decision-making. But the characteristics that make a consumer vulnerable are rather vaguely defined. According to the Financial Conduct Authority, a vulnerable consumer is someone who is easily harmed because of their personal situation. But it is clear to me that people with ADHD do have a vulnerability – especially when grappling to come to terms with a new diagnosis.

Research shows that people with ADHD often have problems managing their finances and can have issues with impulsivity, which can lead to spending without thinking. I worry about adverts targeting a group of people who are also prone to impulse buying, potentially trapping them into costly subscriptions for health tips that may or may not help and are difficult to scrutinise before signing up for a payment plan.

Targeted adverts such as these feed into the issue of self-diagnosis. In 2022, NBC News wrote about TikTok allowing the mental health care startup, Cerebral, to sponsor ADHD advertisements that promoted “negative body images and contained misleading health claims”. The advert claimed that obesity was “five times more prevalent” among adults with ADHD and included the quote: “Those who live by impulse, eat by impulse.”

Another advertisement by Cerebral encouraged female users who were “spacey, forgetful or chatty” to pursue an ADHD diagnosis and medication. Done, another company NBC noted was advertising ADHD treatment, explicitly encourages users to self-diagnose via a survey.

In Europe, the law over using sensitive data for targeted advertising is changing. In July, the court of justice of the European Union said that using personal data for ads without consent breaks data protection rules. Meta will no longer be able to use the personal data of Facebook and Instagram users in Europe for targeted advertising. The restrictions focus on tracking users’ social media activity and creating profiles based on their interests, location and content preferences.

According to Laux, the UK may be affected by developments in Europe. Companies operating in both markets must adhere to the European rules, so it may simply be cheaper for them to adopt more stringent practices across the board.

This change in the law is undoubtedly a step in the right direction, but we need to be having these discussions in the UK, too. In the meantime, we are not completely powerless. If you want to stop the adverts, there are things you can do, Laux tells me. Turning off personalised ads in your settings, or hiding ads in your feed if you don’t want to see them again, are some options.

In an ideal world, social media companies would have areas that are off-limits in terms of advertisement, such as health or sexual orientation. I did not like seeing deeply personal information about my life staring back at me on social media interfaces. By allowing advertisers access to our most intimate data, we are essentially letting them into our minds – and the law does not seem to have caught up yet to protect us against what this means.

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