You have a headache. It’s been going on for a few hours and the paracetamol hasn’t really touched it. Inevitably, the twinge of anxiety comes: what if it has been going on too long? It’s almost certainly nothing. You didn’t sleep well, you had a coffee rather than water at breakfast and you’ve been meaning to get your eyes tested for months.

But what if it is something more serious? It would be better to catch it early, right? It’s better to be safe. You reach for your phone. You type in the words: “Why do I have a headache?” Within 0.57 seconds you have 302 million possible answers. Yet the one you focus on is “brain tumour”.

Google receives more than 1 billion health-related searches every day and each returns millions of answers.

For the vast majority of people, this is how medical triage now happens: a self-directed, self-diagnosed process mediated by an algorithm. We interact with medical services not for a diagnosis but for confirmation of a diagnosis that we’ve already made ourselves. And we’ve usually settled on the worst-case scenario.

This is a real problem for medical services, because the worst-case scenario is almost always the rarest. Self-diagnosed patients, adamant that the professionals are “missing the true cause”, create not just overwhelmed services but mistrust in doctors and medicine overall, a problem that’s exacerbated when a very small number of those patients turns out to be right.

It is a problem for the adult population, too: the availability of self-diagnoses on the internet is driving health anxiety and potentially causing health issues rather than helping to treat them. Misplaced confidence in self-diagnosis can also lead to wasted time, confusion and the wrong treatments when the doctors do get involved.

And this is a problem for schools. With the scarcity of access to medical services, the difficulty in meeting the threshold for special educational needs and disability (SEND) funding, and the increase in “out of character” behaviour and stalled academic progress owing to this year’s coronavirus lockdowns, self-diagnosis of children by parents via the internet is on the rise, according to Sendcos.

Health services are finding their own solutions to the first two issues, but this is incredibly complex territory for schools. So, how should teachers - and, in particular, Sendcos - approach it?

The rise of ‘cyberchondria’

Self-diagnosis is not new, of course. In fact, the act of self-diagnosing has become such a problem for medical professionals that it has been given its own name: “cyberchondria”. Microsoft’s chief scientific officer, Eric Horvitz, was allegedly the first person to coin the word “cyberchondria”, and he attributed part of the problem to something called “availability bias”.

Remember that search for headaches? Despite the statistically low chances of a headache being symptomatic of a brain tumour, repeated search results suggesting brain tumours as a cause create an availability bias where, regardless of the minimal statistical chance of a brain tumour, that is what you start to believe you have. It’s like shark attacks: your individual risk of being attacked in Australian waters is minimal but, if you see enough news reports of attacks and you swim off the Australian coast, you become certain you are about to become a great white’s lunch.

From the outside, that seems like a foolish conclusion to reach but it’s a pretty natural tendency to believe yourself to be the anomaly, even when the statistics suggest that it’s almost certainly not going to happen, says Peter Tyrer, an emeritus professor in community psychiatry in the department of brain science at Imperial College London.

“If you’re already very anxious and are faced with a range of potential explanations for your problem, then the worst case shouts at you across the page,” he says. “Even if the webpage says [incidence is] 1 in 500,000, to the average person with health anxiety, you are that person. It doesn’t matter that it’s rare - they feel they are the special one who has got the disease.”

A US poll last year found that 43 per cent of patients who looked up their symptoms on an online search engine diagnosed their illness to be much more serious than it turned out to be. Meanwhile, a study by Michella Hill, from Edith Cowan University in Australia, earlier this year found that people only managed a correct diagnosis using the internet 36 per cent of the time.

All this results not just in a lot of wasted worry, effort and potentially money (should you choose to seek a private medical opinion) - it can also lead to self-treatment that you don’t really need (see box, below).

Why do we do it? Researchers have cited numerous causes: anxiety about awful diseases that we believe we can cure if we find them early enough (a sense we get from higher success rates of survival for cancer when it is found earlier) or a need to control the situation - if we can find the cause of our illness, we can save ourselves time if we don’t actually need a doctor and, if we do need one, we can have the diagnosis ready. Simple curiosity also plays a part.

It’s easy to see how this can play out with school-age children. Parents are naturally anxious about the health of their child and the media frequently recites stories of “missed” diagnoses. Using the power of the internet to quickly research the child’s symptoms will, we hope, give us control and put our mind at rest. The fact that it rarely does either of these things does not keep us from doing it repeatedly.

However, it’s not just children’s physical health that parents research online, it’s also possible special education needs - and this is where schools are increasingly being put in tricky situations.

Parents are frequently made aware - through media, health services and school reports - of developmental norms, of “expected progress” and of the need for early intervention if any apparent barrier to learning or health issues is spotted. What that can create is a hypervigilance for anything “not normal”.

Sometimes, this can be positive: parents spot a pattern of behaviour that may be a potential issue, work with schools to see if that is consistent with their experience, then professionals get involved and a diagnosis may follow.

But sometimes, that hypervigilance can lead to parents researching normal variations of behaviour, deciding something is drastically wrong with their child, diagnosing that child and then demanding that the school act.

There is clearly a lot of grey between those two extremes but there can be many negative consequences if the school does not handle the latter circumstances carefully.

According to Sendcos spoken to for this article, such situations were already popping up pre-Covid, but during the pandemic - in the cauldron of home learning, general health anxiety and families pushed together in abnormal circumstances - they became even more prevalent.

Aurora Reid, an experienced Sendco who worked for several years in London, says that anxiety about normal behaviour isn’t uncommon. “It’s not unusual for parents to come to the school with questions about their children,” she explains. “Parents will come forward with concerns and they will also talk to their children openly about their concerns. A lot of the time, we can reassure parents that their child’s behaviour isn’t actually out of the ordinary.”

However, Sendcos found that the frequency of parents alerting the school to fears about their children’s behaviour started to increase after the switch to home learning in March.

“We heard from parents that they were struggling to get their children to sit at a table for long durations, and raising concerns about their concentration spans,” explains Victoria Phillips, Sendco at Gordon’s School in Surrey. “Parents were coming at it from a professional adult mindset. They were not used to seeing children or teenagers on a day-to-day basis and, for them, it was the shock of a reality check.

“The knock-on effect has been a rise in requests for further testing and parents diagnosing their children with conditions. We had so much self-diagnosing during lockdown, asking us why can’t they focus, why can’t they complete the tasks? And it was because they weren’t used to seeing children and teenagers work day to day, and they had a shock.”

Reid agrees. “We were making weekly welfare calls to families, and we were hearing about how children were struggling with the tasks that they were set,” Reid explains. “But the very nature of the tasks were very adult and it isn’t that surprising that students struggled with it.”

Natural conclusion

To be clear, this is not to say parents were overreacting or in the wrong - simply that the circumstance led to a medicalisation of normal behaviours that schools had to navigate. And Tyrer says it was the natural conclusion to a trend towards health anxiety that has been going on for some time.

“We’re living in an age now where everyone is much more aware of health and monitoring their symptoms,” says Tyrer. “So this reaction to online searches is much more serious and much more common.”

For the most part, these parental concerns, which are amplified via the internet, are being cautiously communicated to Sendcos and then politely and empathetically rebuffed: the parents didn’t really think that there was an issue, but the internet forums freaked them out and they wanted reassurance from the school. The school’s job was to provide parents with that reassurance.

“It’s really about listening to parents as they voice their concerns about their child,” says Reid. “Then you focus on what you need to do to help them. That won’t always be pursuing a diagnosis if it isn’t appropriate, and there is still a lot you can offer in help without a formal label.”

However, there are also those greyer areas during lockdown where prior concerns were brought into sharp focus, and where parental concerns were not cursory but solid beliefs.

Let’s use a fictitious example to demonstrate. Sarah had always noticed how her seven-year-old son James was obsessional about certain topics, mainly dinosaurs. She had also noticed he became distressed when routines changed and his teacher had mentioned he was struggling a little socially compared with his peers. She’d put it down previously to normal childhood development.

But during lockdown, James’ obsessions grew - in fact, he would not do any home learning unless there was a dinosaur element to the work. His aversion to change also grew: he wanted to know every aspect of the day ahead and any deviation from that plan sent him into a heightened emotional state. Sarah also started noticing that he struggled to maintain eye contact.

She turned to the internet. She typed in “symptoms of autism”. She read everything she could find for the next four hours.

Without access to school or health services, Sarah’s fears became obsessions and went unchecked by anyone with professional expertise in autism. She would watch James for hours, making notes about his behaviour.

After a week, she was 100 per cent sure he was on the autistic spectrum. Nothing any of her family could say could persuade her otherwise. Sarah’s next move was to approach the school.

Sendcos report that such a series of events did happen before lockdown but suddenly became more common during and after it: particularly when in relation to autism and attention deficit hyperactivity disorder (ADHD) but also conditions such as dyslexia. Parents are now regularly approaching school staff with a firm belief in a diagnosis.

“I’ve now got more requests for diagnosis than ever before,” says Phillips. “It’s a lot of pressure. Parents have been observing and reading more of their children’s work than ever before, and picking up on problems related to organisation, behaviour and so on.”

In such a situation, where the parent makes a case for the issue to be looked into, schools need to tread carefully and sensitively. The first reaction should not be to in any way confirm a diagnosis, says Victoria Allan, a former Sendco and now a special educational needs and disabilities information advice and support services manager at the charity Supportive Parents.

A SEND diagnosis is incredibly complex, she explains, and it relies on extensive evidence and observation carried out by trained professionals. Parental input is absolutely crucial - perhaps the most crucial element - but teachers need to make it very clear that diagnosis via search engine is nigh on impossible.

She uses autism to explain her point: “There is a lot to the process of the diagnosis of autism. There used to be a requirement to find a triad of difficulties in three areas but now they’ve added a fourth element.

“First of all there needs to be a detailed speech and language report by a therapist, called an autism diagnostic observation schedule. That report would then go to a paediatrician for their assessment. To get a diagnosis, there needs to be an agreement between both professionals.”

Caution is important because if an issue is discovered, it’s usually not the thing that has been thrown up by the internet when the parent has gone searching, says Reid.

“Because people have a little bit of an understanding of dyslexia, autism and ADHD, these are what parents will ask if their child has,” she says. “There is a base level of knowledge among the community of certain conditions.

“But in my experience, by far the most prevalent special educational need is in speech, language and communication, and it’s very rare that a parent approaches asking if their child has this.”

The issue, though, is complex. While self-diagnosis via search engine can create unwarranted anxiety and journeys down dead ends, for some parents with serious concerns that are not being heard at school it is their only option. Schools need to be aware that, on some occasions, the parent may know more about a condition than they do.

“In my case, my concerns were dismissed at first, then blamed on poor parenting - they didn’t actually say that, but I was left with the impression that that was what they assumed - and then my son’s behaviour at home was just put down to anxiety,” says one parent, who wishes to remain anonymous. “I had to really fight my corner, so of course, I spent a hell of a lot of time looking things up on the internet and getting myself as informed as I possibly could. In the end, my son was referred to a paediatrician because I went to my GP about it - the school didn’t think there was a problem at all.”

How do you judge between unneeded worry and serious situations like this? It’s about being open-minded and listening to the parent at the earliest stages.

Working together

Step two is where the investigations occur. If a parent is convinced there is an issue, schools have a responsibility to look into it, but they have to do so agnostically.

Reid advises Sendcos to be led by the results of their own screening tests. Using school funds to explore diagnoses that they know will not be confirmed will only take money and time away from support. They have to trust their own professional opinion and experience, which should be informed by extensive conversations with parents - a common issue is that behaviours are masked in schools, but are commonly seen at home, so as a Sendco you may not have the full picture.

If the investigations come back as positive for the area that a parent identified, then support can fall into place. Where the result is that a SEN is identified but it’s not the one parents fixed on from their internet searches, Reid says teachers need to handle it carefully. “You have to work with the parent to help them see that, actually, this different diagnosis is the right one, and get them to see that the support system is more appropriate for the child,” she advises.

Where a parent is sure their diagnosis is correct, being told it is not can lead to a deterioration in the relationship between the school and the family.

And just as the internet provides a diagnosis, it also has an archive of parents who have had to fight for recognition for their child’s SEND and, after years of trying, have won that battle. As a result, parents can feel that this is the norm - that to get a diagnosis, a war needs to be waged.

“The problem is there is a huge frustration out there among parents with children with special needs and disabilities,” Allan explains. “They feel like it is a battle and a fight, and that’s often with schools but also with local authorities; everything needs to be fought and won.”

Allan says that this is not the full picture, though. “So many parents out there have had those experiences and they’re the ones who are more vocal, [but] the voices of parents who have had positive experiences with their schools, they’re not the ones being heard,” she says.

She advocates that parents know their legal rights and ensure that schools are doing everything they should be doing.

Unfortunately, this is not guaranteed, as many parental testimonies prove, but Allan also strongly advises that communication lines with teachers are kept open as this is essential for taking the next steps.

Reid says that teachers have to play their part here by showing empathy. “Parents will feel like they’re fighting schools and the local authority,” Reid says. “You’ll often hear from parents that there is a history: they might say they had an undiagnosed condition, that they went through school without any support. They have to feel like we’re all on the same team; show them that you both want their child to achieve their best.”

Part of the process is to work with parents on the challenges they have identified that the child is facing, says Tyrer.

“The best thing is to continue to provide alternative interpretations to what they think is true,” he says.

“We call this guided discovery because it gives people the opportunity to test things out for themselves and then realise their original views were misplaced. So an anxious parent who constantly monitors their child for illness by measuring pulse rate and breathing, so creating additional anxiety in both, is asked to keep an anxiety diary and asked in alternate weeks to forego this behaviour. Almost invariably, the weeks when they do not check show less anxiety in both parent and child.”

Something that helps Reid manage parents’ expectations is spending time getting to the root of why they’re so set on getting a diagnosis because, in her experience, there is often a reason behind it.

“You must understand where the anxiety is coming from,” says Reid. “Their anxiety might be coming out as ‘I want a diagnosis for my child’. But there will often be a reason sitting behind that. Often, there will be some history there, or pressure on the family. Listening to these worries can move the focus away from the diagnosis and [allow you to] tackle the underlying problem.”

In short, snap judgements should not play a part at any stage of this process. Dialogue needs to be kept open, and parents need to be given the time and space to speak about their concerns.

“Our responsibility is always to the child and meeting their needs,” says Reid. “And no one wants to give a child the wrong diagnosis. That would be no better than going undiagnosed.”

Even before the Covid-19 pandemic hit, SEND diagnosis was in a mess. Constrained budgets, inaccessible services, and a complete lack of time for anyone in public services to stop and think were all nudging parents towards the internet for answers because it was difficult to find any elsewhere. After eight months of the pandemic, this will likely be much worse.

In this context, trawling online search engines for answers should be seen as a symptom, not of anxious parents or failing schools, but of a SEND system not quite working as it should.

Grainne Hallahan is senior content writer at Tes. She tweets @heymrshallahan

This article originally appeared in the 6 November 2020 issue under the headline “Dr Web will see you now”