How undiagnosed ADHD in adults interacts with mental health

The more we learn about neurodiversity, such as autism spectrum disorder (ASD) and ADHD the clearer it becomes that neurodiverse people are more common than we first thought. Unfortunately, knowledge of the increasing number of people who have ADHD or ASD does not mean the world is any easier to live in for neurodiverse people. People with ADHD, diagnosed or not, are more likely to experience anxiety, depression, emotional dysregulation, substance abuse and sleep problems.

Written by Bryony Porteous-Sebouhian

ADHD: a misunderstood disorder

Similarly to ASD, there was a long period of time during which people assumed ADHD was a ‘boys’ disorder that presented through hyperactivity, behavioural problems and the inability to pay attention.

ADHD was severely underdiagnosed in young girls, even more so in young and adult women. More generally, adult diagnoses were extremely uncommon. In fact, there was a dated belief that with the right medication, therapies such as cognitive behavioural therapy (CBT), children could in fact ‘grow out’ of ADHD.

The number of people seeking referrals to neurodevelopmental services for ADHD and ASD has increased, however the number of people living with ADHD and those who have been formally diagnosed couldn’t be further apart.

In 2018 [1], ADHD Action estimated that 1.5 million adults in the UK have the disorder and are mostly undiagnosed

Out of this 1.5 million, they estimated that only 120,000 have received a diagnosis. Currently, waiting lists are anywhere between three to five years, with some reports of wait times reaching seven or more years.

Living with a neurodiversity, without the diagnosis, and therefore being unable to access any NHS support or treatment that might come with it is just one of the aspects of being undiagnosed that can impact a person’s mental health.

How ADHD can impact mental health

Another more unassuming way that having ADHD but being undiagnosed can negatively affect a person, is that there are numerous mental health issues that can come hand in hand with ADHD. If a person isn’t aware that they have ADHD, these mental health issues might seem as though they have no root cause.

Often people experiencing bouts of depression and/or anxiety are doing so because there has been a trigger. These triggers are frequently stress induced, maybe there has been a sudden change to your life such as separating from a long-term partner or losing a job. However, a person with ADHD might struggle with depression and anxiety for no apparent reason.

Another element of ADHD that can make maintaining your mental health difficult is emotional dysregulation.

Emotional dysregulation can make emotions feel overwhelming and unbearable. Considered to be a ‘core’ part of ADHD, it often presents as extreme, often disproportionate emotional reactions to situations that others might deem as ‘normal’ or ‘everyday’.

These situations can be something as small as receiving the wrong order from your favourite coffee shop, or on the slightly more acute end, such as a confrontation or conflict at work. In neurotypical people, they might manage their reaction, even if they’re frustrated or feeling defensive. For a person with ADHD they may become visibly and overwhelmingly frustrated, angry, become aggressively defensive or upset.

Emotional dysregulation in ADHD can also result in ‘shutdowns’ where a person becomes overwhelmed by what they're feeling to a point that they space out, in this state they may find it difficult to speak, move and articulate how they are feeling.

Another common side effect of emotional dysregulation, something more often associated with ASD is the idea of ‘meltdowns’. This can happen after emotion builds up internally and a person presents as both psychologically and physically experiencing the emotion, or multiple emotions at once.

Although distressing during, meltdowns can actually be a vital way that neurodiverse people regulate their emotions, especially as an adult where presentations of extreme emotion are not seen as ‘acceptable’.

Another way that being undiagnosed can impact someone with ADHD is that, all of the above – and especially the aspects of emotional dysregulation that are the most invasive/disruptive – might prove be difficult to be around as a partner, friend, family member, colleague or loved one. For those around people with ADHD, not knowing about these symptoms and experiences can make it hard to understand and accept.

Weighing up the importance of a diagnosis versus acceptance and support

A formal diagnosis can help to manage some of the negative effects that the above experiences can bring, being able to tell loved ones you are diagnosed, or even employers, can give those around a person with ADHD a greater understanding of their behaviour, and even, where appropriate, make reasonable adjustments to ease some of their distress.

So too can it help a person with ADHD understand some of the reasons why they struggle more than their neurotypical friends, family and colleagues. A diagnosis can alleviate some of the blame and shame people with ADHD might place on themselves for not ‘achieving’, or for struggling to cope often.

However, in comparison to how neurodiverse disorders were thought of even 15 years ago, there are more options for people now that don’t involve the necessity of a diagnosis by a psychiatrist.

There are multiple charities that offer peer support, advice, call lines, and resources to anyone who has ADHD, diagnosed or not.

In some cities, GP practices are able to prescribe ADHD medications without an official diagnosis if a clinician with expertise in neurodevelopmental disorders agrees a person meets the threshold. Trying out different medications, even if it means you discover they’re not right, can be a great intermediate action to take, while waiting times for assessments are so long.

Another tool that is available to us, is the wealth of information on the internet. From Additude Magazine to pages by charities such as ADHD Aware and ADHD Action, there is a lot of reading one can do to become more informed on ADHD and the struggles people with the disorder might experience.

Even if a formal diagnosis is a long way off, passing on some of this information to the people who would benefit most from being informed can be a positive step forward.

As an aside to this, for healthcare professionals, mental health professionals, employers, friends, family and loved ones: if a friend, loved one or someone under your care/employment approaches you with concern about having ADHD, or just simply wants to let you know they think that is the case, it is really important to not invalidate that person just because they haven’t been formally diagnosed.

It is of course, important to be sensible, read around the disorder, watch informative videos by reputable sources (such as the charities mentioned above), before coming to any immediate conclusions.

Living with ADHD, especially before being formally diagnosed can be a difficult experience. Not only can attempting to access services be stressful and invalidating, but those around you might not take your disorder seriously without a diagnosis.

Being informed and informing those around you is a positive way to begin implementing the necessary adjustments that benefit your mental health, as is tracking down local and national ADHD charities and organisations who can provide community and support.

Self-care can be hard when you live with a neurodiversity. Finding ways to increase self-empathy through a greater understanding of neurodiverse disorders, how they work, how they affect you and your mental health is one small way to start implementing it.

ADHD resources and support:

1. 'ADHD Foundation'
2. 'ADHD UK'
3. 'ADHD Action'
4. 'ADHD Aware'

Reference list:

1. 'ADHD diagnosis for adults 'can take seven years''