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Posted 11 Feb 2023

Neurodiversity: 5 Things Employers Need To Know About Self-Diagnosis

The BBC have raised the issue of self-diagnosis in neurodivergent conditions such as ADHD, Autism, Tic Disorders and Dyslexia. Their report suggests that self-diagnosis is mushrooming, thanks to a plethora of information flooding social media. People with lived experience are sharing their journeys, and developing large followings, which is raising awareness to heights never seen before.

We have two difficulties here. The first is that not all the content is accurate, and so some people may think they have a condition that the do not have. The responsible accounts have support from professionals to ensure they do not spread misinformation, but there is no way of checking which accounts do this and which do not. The second difficulty is that the UK is not set up to deal with the large numbers of people coming forward for assessment. Employers can play a key role in facilitating this problem, so here’s what you need to know.

1. Diagnosis Is Not Essential For Disability Protection.

UK disability law frames disability as chronic difficulties in normal day-to-day activities lasting 12 months or more. It does not provide a long, exhaustive list of what is covered or not covered. Therefore, if you have an employee who is experiencing chronic difficulties in normal working activities related to communication (e.g. literacy or following instructions) memory or learning, you might do better to assume disability and act protectively.

You do not need to wait for the label or undergo expensive time consuming assessments to make basic accommodations and adjustments. Adjustments generally result in a performance boost of around 50%, which can reduce stress for both the employee and their line manager.

Profile image of Professor Nancy Doyle. She is smiling with arms folded, wearing a black patterned dress.

2. Self-Diagnosis Is Often Valid

In my research to date, I have always asked for disclosure of formal or self-diagnosis and compared the difference in their other responses. To date, I have not found a difference in rates of insomnia, well-being, job performance, experiences of inclusion or exclusion, helpfulness of disability support and more. The implication is that people are very aware of the issues they face in their daily lives and where they need support to overcome the challenges. We can trust employees to explain their difficulties and work with them at the face value, in their current context, even if they are not 100% accurate on what is causing them.

That said, formal diagnosis is stills huge value to employees. It is cathartic and helps people overcome their self-doubts, increasing confidence and ambition. Formulating a diagnosis is a professional job. We need to exclude other health conditions such as Thyroid Dysfunction, Brain Injury, Chronic Health conditions, mental health distress and trauma. It require careful unpicking of background and specialist testing which only trained professionals can access. The wrong diagnosis can lead inappropriate medical treatment which is dangerous.

4. Backlogs For NHS Diagnosis Are Extreme, Or Non-Existent

You cannot be diagnosed with Dyslexia, Dyspraxia, Dysgraphia or Dyscalculia on the NHS. So if you miss out at school or college, the only way is to pay. Waiting lists for ADHD and Autism diagnosis run into the years. So employers relying on employees to produce evidence of a diagnosis might find that this takes too long to provide any help in managing careers or performance.

Many employers are providing diagnosis themselves, via Occupational Health or specialist providers, however as said above, diagnosis doesn’t not need to be the gatekeeper to adjustments. You can ask your employees what adjustments they need, you can provide examples of what is working for others in the company and formulate a plan of support. This is just good management, it really does not need to be any more complicated than that.

5. Diagnosis Is Privilege

The last thing to know is that because of these issues, diagnosis is privilege. Females are less likely to be diagnosed as children, Black and Brown children are also more likely to be falsely diagnosed with conduct disorders – it is not an exact science. And so, when you get into adulthood, there is a gap between those who could afford to go private and/or had the agency to ask, versus those who did not.

Outcomes for people who were diagnosed late are worse – we are less likely to understand our strengths, which has a lingering impact on our confidence and ambition. Bear this in mind when deciding how to allocate adjustments and whether or not to require a psychologist’s letter for access to adjustments if you are not subsidising diagnosis. Neurodivergent people can add huge value to your workforce, but we are also vulnerable and need the right scaffolding in place to thrive.

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