Grief after a late neurodivergence diagnosis

In recent years, there has been an uptick in people being identified as neurodivergent later in life due to a better understanding of how these conditions present in different people. Usually, when people talk about a late diagnosis (or identification) of their neurodivergence, it’s a broadly positive story, involving a better understanding of themselves, their personality, and their life story.

That better understanding can then lead to additional positives, such as improved self-esteem, less self-blame, access to appropriate help, better coping skills, and reduced isolation. What is less talked about is the other side of late-diagnosed/identified neurodivergence - that of grief.

Understanding grief after a late diagnosis

Grief can be made up of lots of different emotional experiences, including sadness, anger and regret. It can be common to experience grief and its associated emotions after a diagnosis/identification of neurodivergence.

This grief doesn’t necessarily have a timeline – it depends upon so many factors, such as the circumstances that led to the diagnosis/identification, the struggles the person had before, how late their diagnosis/identification is, and how their differences were perceived by the person and others before - so feelings of grief may wax and wane over a long period of time after diagnosis.

It can also be common for those who are late-diagnosed to initially make sense of their current life through the lens of neurodivergence, but then for the person to consider their past through that lens. Often this process takes months or years as the person grows in understanding their neurodivergence and more realisations arise.

Some people will feel sadness for their younger selves who didn’t know they were neurodivergent – who may have known they were different in some way, but not necessarily how. 

Feeling sad about the support you missed

Rude; difficult; quiet; stubborn; anxious; weird; clumsy. These are just some of the many labels I accrued about myself as an undiagnosed neurodivergent young person. I had the sense that there was something deeply wrong with me, and in my teens I desperately tried to figure out what it was.

When I think of my young self, I feel so sad for her that she didn’t know: that what was different about her was a recognised condition, something she could work with to her advantage, and that in the future she’d meet many others like herself.

Sometimes reflecting on the past can turn to “what ifs”. How might life have been different had the person known they were neurodivergent earlier? What support might have been available? What choices they may have made had they known sooner. How understanding one's strengths and weaknesses better could have led to different paths.

Feeling anger after a late diagnosis

Sometimes this sadness can lead to anger. Anger at professionals who may have missed the neurodivergence or misdiagnosed them with other things. Anger at people who didn’t understand. Anger at people who were actively hostile in some way due to the person’s differences. Anger at a world that can be so inhospitable and systems that just don’t work for a neurodivergent person.

Many late-diagnosed/identified neurodivergent people will have suffered due to their differences.

Misdiagnosis: when autism or ADHD has been overlooked

Depression, social anxiety disorder, OCD, borderline personality disorder, bipolar disorder… several late-diagnosed/identified neurodivergent people (especially women) accrue an assortment of mental health diagnoses, when it was neurodivergence all along.

When these diagnoses are incorrect, they can lead to inappropriate treatments and medication regimes, and further labels such as “treatment resistant” when these don’t work. The grief and anger for these individuals can be particularly acute. 

The understanding of neurodivergence can bring an entirely different lens to these (mis)diagnoses, such as whether ‘depression’ was neurodivergent burnout, ‘social anxiety’ was actually autistic communication differences, or ‘borderline personality disorder’ was rejection sensitivity and emotional dysregulation.

To complicate matters further, those who are neurodivergent are more likely to experience trauma and mental health challenges (and being neurodivergent does not rule out coexisting mental health conditions), so it can be difficult to differentiate between what is mental health and what is neurodivergence.

How counselling could help

Coming to terms with a late diagnosis/identification of neurodivergence can be an emotional rollercoaster, and with a lot to think about.

Many people find counselling helpful for this process: a safe space to work through all the emotions, to develop better self-understanding through the lens of neurodivergence, to identify strengths and means of managing challenges, to reflect on the past and the grief that late-diagnosis/identification may have triggered, and then to look to the future with a better understanding of one's unique self.