Late ADHD Diagnosis, Dealing With Stigma and Finding Your Glimmers

Stop! The ADHD bandwagon is here, jump on quick! That’s the snarky message being sent to those of us who recently have been diagnosed with ADHD, usually biologically female and over the age of 30.

The journey to discovering you are neurodivergent as an adult is a long one. It’s not simply watching a TikTok video, identifying with some of the traits and deciding ‘Oh I am so ADHD and therefore right on trend’.

If you are neurodivergent, once the seed has been planted, no doubt you will have taken a deep dive into all the possible research you can get your hands on. You will have agonised, sleepless nights going over your childhood and every cringe-worthy incident that ever happened to you. You will have hyper-focused on the subject, taken every online quiz, listened to numerous Podcasts, and analysed the DSM-5, before deciding that despite the evidence to the contrary, you are not neurodivergent but some kind of weird imposter.

Eventually, you might join a very long waiting list to seek a professional opinion. Even when they agree that yes you do have ADHD, it might take you a while to overcome your internalised abelism to accept that you were right all along and you are not some kind of attention-seeking imposter.

So what is ADHD?

Additude magazine provides a great explanation

“ADHD (attention deficit hyperactivity disorder) is a neurological disorder that impacts the parts of the brain that help us plan, focus on, and execute tasks. ADHD symptoms vary by sub-type — inattentive, hyperactive, or combined — and are often more difficult to diagnose in girls and adults.”

It is not a mental health disorder. It is not a learning disability. It is not a behaviour disorder. There are three types — hyperactive, inattentive and combined. There are a variety of symptoms including:

• Inattention
• Lack of focus
• Poor time management
• Weak impulse control
• Exaggerated emotions
• Hyperfocus
• Hyperactivity
• Executive dysfunction

Bandwagon Bozos and the TikTok Trend

Unfortunately, there are snarky ableist commentators in the media and online who are producing documentaries, newspaper articles, and conducting interviews deriding the fact that more and more people are getting diagnosed later in life and are doing everyone a disservice. If you happen to be a celebrity or well-known person who ‘comes out’ with their neurodivergence, instead of being applauded for their candour and availing themselves as positive role models for the neurodivergent community, their motives and character are questioned.

Despite what these ‘Bandwagon Bozos’ would have you believe, it is not easy for anyone to stand out as ‘different’ in our society. Growing up in a world where neurodivergence is seen by the ‘neurotypicals’ as ‘lesser’ to the gold standard ‘neurotypical’ brain is hard. The survival instinct to mask our neurodivergent traits and try to fit in as much as possible is strong, especially for females.

There is so much misinformation, ignorance and stigma around neurodivergence. Research that is flawed and decades out of date is still being spouted by professionals, and neuro-affirming training in universities for future educators and medical professionals is not comprehensive enough.

Thankfully with the rise of social media and an accessible platform for neurodivergent people to talk about their real-life experiences and create neuro-affirming content, there is more opportunity for education and to create awareness of the reality of being neurodivergent in a neurotypical world. It also spreads the message to a wider audience to understand and accept that ‘different’ does not mean less than.

The Numbers

The opposite is true of what the ‘bandwagon bozos’ spout. Worldwide, there are a huge number of adults who remain undiagnosed and unaware of their neurodivergence. Whole generations of adults have been missed and as ADHD is highly genetic, the traits and struggles of ADHD have likely been normalised within a family for generations.

”Len Adler, M.D., one of the leading researchers in adult ADHD and a professor of psychiatry at New York University, believes that at least 75 per cent of adults who have ADHD do not know that they have it. This is a huge proportion, and this lack of knowledge causes damage to those who go undiagnosed, as well as to their families and friends.” — Edward Hallowell, M.D., The Downside of Undiagnosed Adult ADHD

The Labels

Undiagnosed adults who are often struggling with low self-esteem, anxiety, chronic overwhelm and have poor executive function skills frequently label themselves negatively, ‘I’m so stupid, how did I forget that?’, ‘I can’t even keep my house tidy’, ‘I won’t get that job, there’s no point even applying.’ Even if they are aware they may be neurodivergent, they may be unwilling to investigate it. They don’t want the label or stigma attached or perhaps think what’s the point? I’ve come this far and I’m fine! Of course, it is everyone’s prerogative to decide for themselves whether or not to pursue an ADHD diagnosis — however, it’s also important to be honest with yourself about your reasons. It is internalised ableism? Is it fear of a negative reaction from family and friends? The expense? The fear of trauma that would be revisited if you had to go down the rabbit hole of childhood experiences? All of these are perfectly valid reasons and there’s always self-diagnosis which no one needs to be privy to.

The other side of the coin however is that when you understand your neuro-type is not ‘typical’, you get to know yourself all over again and view yourself through a different lens. Those ‘character flaws’ you have berated yourself over for years are no longer ‘flaws’ but things beyond your control. With a diagnosis, there are plenty of avenues you can pursue to help make life easier. There are Occupational Therapists and ADHD coaches who can help with executive function difficulties, neuro-affirming therapists who can help you understand your brain and help with co-morbidities such as anxiety. Of course, other neurodivergent people will relate to your lived experience.

Various stimulant medications help your brain become calm enough to be able to focus on difficult tasks. The stigma surrounding ADHD medication is a whole other blog. Many people with undiagnosed ADHD are - without realising it - self-medicating with caffeine or energy drinks, which give a similar effect to stimulant medications.

You are living in a world not built for brains that run differently, and you are doing a great job in a difficult situation. Your creativity, strengths and talents far outweigh any negatives that you have been labelled with your whole life.

There are also parents unwilling to label their children as neurodivergent for a variety of reasons. Unfortunately, that child will still be labelled by others with less than complimentary descriptions ‘naughty, rude, wild, lazy, stupid, selfish’. A child quickly grows into a teenager and an adult who, if never allowed to understand their neurotype, will therefore never truly know themselves. Perhaps they will grow up believing the unfair labels they were given as a child, fostering all kinds of issues with self-esteem and mental health. Read the Unhelpful Labels blog post for more on labels.

Teenagers with ADHD are also more at risk from risky behaviours due to impulsivity, the search for dopamine and hormones. Knowledge is power, being a teenager and all it entails is tricky enough but add undiagnosed ADHD into the mix and it can become very difficult. A teen who understands their brain, has a good relationship with a neuro-affirming adult in their life, and has strategies in place to help them under the guidance of a professional, are much less likely to ‘go off the rails’.

According to Additude Magazine, the most common risks to ADHD teens are:

• Drug use and habitual abuse
• Unwanted pregnancy
• Sexually-transmitted diseases
• Lower test scores
• Higher rates of not completing high school
• Regrettable internet and social media use
• Serious car accidents

Why are More Girls and Women Getting ADHD Diagnoses?

ADHD has traditionally been viewed as primarily an attention disorder in young, hyperactive boys and for years nearly all scientific research was focused on this demographic. It wasn’t until the early 1990s that the first female was diagnosed as having ADHD. We now know that ADHD in females often presents very differently to males, with hyperactivity more likely to be internalised as an overactive, busy brain. Girls are better at masking and socialising, from a young age they are socialised to be more aware of social conformity. Due to their desire to fit in and anxiety about doing something wrong, they are less likely to draw attention to their struggles or over-compensate by trying to obtain ‘perfection’, much to the detriment of their long-term mental health and self-esteem.

Thankfully more of the ‘lost generations’ of undiagnosed females are becoming aware of their ADHD in their late 20s, 30s and 40s. There is more general awareness thanks to easy access to information through the internet and social media. Often it is after their children are diagnosed that they recognise the same traits in themselves. Sometimes it’s when huge hormonal changes occur such as in pregnancy or peri-menopause that the carefully constructed teetering plates of life come crashing down. Undiagnosed neurodivergent women often develop a chronic illness due to a lifetime of their highly sensitive nervous systems and brains being in a constant state of overwhelm and fight or flight.

This interesting article on the American Psychological Association’s website by Nichole Crawford explains it well:

“Women with ADHD typically present with tremendous time management challenges, chronic disorganization, longstanding feelings of stress and being overwhelmed, difficulties with money management, children or siblings with ADHD, and a history of anxiety and depression, says Nadeau, who didn’t recognize her own ADHD until middle age and has a daughter and a brother with the condition.”

For females, growing up with undiagnosed ADHD is difficult, struggling with apparently ‘easy tasks’ and feeling like a failure as you saw your peers not have the same difficulties.

Maybe you struggled with:

• Fitting in (always feeling awkward, especially in groups)
• Knowing when it was your turn to speak in conversations and interrupting.
• Executive function skills include being organised, being on time, focusing on stuff that didn’t interest you, memory, self -control.
• Being hyper-empathetic and ending up people pleasing
• Being impulsive
• Being restless, always needing to move on to the next thing to keep life exciting.

Maybe you hid your difficulties so well through masking as you didn’t want to get in trouble but internally you struggled massively. Perhaps you were later diagnosed with anxiety or depression or even Bipolar Disorder and given medications to address those.

The Glimmers

When talking about ADHD it is usually the negatives that are focused upon. They are only deemed negatives though because we live in a society where certain traits are valued more than others — being organised, on time, and able to focus at the drop of a hat.

Imagine if we lived in a neuro-affirming world where our differences were celebrated. She may not be the best at packing a suitcase but boy can she multi-task. Feeling stuck in a rut? Your ADHD friend can help there, she is so creative and has so many ideas. Let’s not forget the amazing ability to hyperfocus, a really strong moral compass, highly empathetic, accepting of differences, resilience, and courage in the face of adversity, to name just a few of the amazing strengths of the ADHD brain.

You Are Not Alone

Whatever your age, finding out your neurotype is life-changing, it is a big deal. You can give grace to past you who struggled and high-five them for everything you achieved despite the challenges you faced. Maybe you have been recently diagnosed and were disappointed by a negative, unbelieving, or frankly disinterested response from friends or family. Perhaps you are pretty sure you have ADHD but are worried about pursuing it due to the potential response of others.

Just know that you are not alone. There is a diverse online neurodivergent community with many understanding, wise and wonderful people. You will find your tribe and there will be glimmers, many glimmers.