Late ADHD Diagnosis: One Year On
Yesterday marks one year since my late ADHD diagnosis, so I wanted to reflect upon how this year’s been.
Late ADHD diagnosis affects many people across the world, as society is starting to learn more about the condition.
The NHS state 3% of the UK have ADHD, and ADHD Foundation believe 1 in 20 people have the condition.
It’s estimated that 1 million women across the UK have ADHD, but most of them don’t even know it.
Why is Late ADHD Diagnosis Common for Women?
Sadly the female neurodivergent population are often missed as children, so it’s common for diagnosis to occur later in life.
This is due to divergent conditions including Autism and ADHD tending to present differently in females.
When these conditions were first identified, the traits identified were based upon research studying neurodivergent white boys.
We don’t all run around all day, misbehave in class, and struggle to sit still or watch a film.
Often girls and women get mislabelled as shy, withdrawn and daydreamer who lack common sense.
Doctors commonly misdiagnose anxiety, depression and personality disorders as the main problem.
However, these conditions can be comorbidities with ADHD. They can also co-occur as a result of the trauma caused by living with undiagnosed ADHD.
The NHS claims the condition reduces with age, but many older women receive late ADHD diagnosis, as symptoms worsen.
Menopause and ADHD
As women get closer to menopause, our hormones change.
Perimenopause for many begins around age 35, with exception to some who have it much earlier or later.
Those with ADHD struggle with dopamine. Science isn’t sure if we have low dopamine or don’t use it as effectively as neurotypicals.
For women, we have oestrogen which goes up and down during each month. As we become perimenopausal, our oestrogen declines, which causes ADHD traits to increase.
Many perimenopausal women believe they have early dementia, when it’s actually ADHD worsening as their hormones deplete.
As the hormonal decline increases ADHD traits, many finally notice the ADHD that’s always been there.
Why Late ADHD Diagnosis is Important
Since being diagnosed, some people have asked me why I bothered getting a diagnosis so late in life.
They assume I’ve lived my life this far coping without it, so why bother?
My life consisted of surviving, rather than living, because I was trying to do things in ways that doesn’t work for my brain.
Constantly exhausting myself trying (and often failing) to do what neurotypicals find easy, affected my mental health hugely.
Many undiagnosed adopt unhealthy coping mechanisms to cope with life which include addictions, eating disorders, depressive disorders and much more.
The struggle of trying to fit in with a neurotypical society, means many can try to end their lives too.
If somebody has lived with PCOS or arthritis for years without knowing, should they avoid getting a diagnosis?
Just because they’ve managed so far, doesn’t mean that will continue as their conditions progress. They may manage better if given the right medications, physio and strategies.
I have lived so far without the diagnosis, but had I known about my condition, my life may have been less painful and exhausting.
The label doesn’t fix me, but it means I can learn how my brain functions, to work with it, rather than against it.
It means I can identify which behaviours and struggles are due to my brain’s wiring, rather than assuming I’m a failure or bad person.
Most importantly, the diagnosis opens up resources (therapies, medications) to cope with the condition in healthier ways.
My Late ADHD Diagnosis Grief
Late ADHD diagnosis is definitely an emotional rollercoaster.
Hearing the psychiatrist confirm I have Combined ADHD was a mixed feeling of relief and pain.
Nobody prepares you for the grief that comes with the diagnosis, and no support was offered by my doctor, apart from medication.
Even now, a year in, I’m hit at random by grief.
Stumbling across old photographs that evoke memories where I can now identify the divergent traits is painful.
I take myself back to those moments and notice so many things I was dealing with that don’t look obvious in the photos.
In one, I’m smiling in a tent at Guide camp. It was a fake smile, masking to look as happy as everyone else was.
That girl cried every night (and day) wishing to be at home with the routines, people and activities she was used to.
I struggled to interact with others, had sensory overload sleeping in cold tents on hard floors with noises that made my head implode.
How did nobody notice my divergence is a common thought I keep brushing aside.
Back then, teachers and GPs were even more clueless and unaware of how it presented.
Lack of Support
Many wonder how their parents didn’t notice, but neurodivergent conditions are often passed down genetically.
Why would an undiagnosed parent who grew up with their own neurodivergent parents, notice you behaving differently to the norm? Divergence is likely to be their ‘normal’ too, so they wouldn’t notice.
Recognising this helped a lot, but the biggest battle has been the lack of acknowledgment and support I’ve had since diagnosis.
It’s been non-existent (apart from my partner), and that hurts.
I’ve shared my diagnosis and there’s been no interest to find out more, no mention of it (although I refer to it constantly) and no desire to see if they identify too.
I’m aware it can be difficult for people to face the prospect that they might have these conditions, so many avoid it.
Knowing this, I’m learning to just talk about my own experience and accept when they choose not to explore it. I must respect that.
But even so, not being supported with my own diagnosis is something that may take a while to come to terms with.
The Lows of This Year
One of the most shocking things about getting a late ADHD diagnosis is the lack of professional support that comes with it.
As soon as I was diagnosed, I was offered medication, but that’s it.
Medication can only do so much, with the aim to reduce some of the more practical traits, but it doesn’t help the tougher stuff.
Emotional dysregulation is the part I hate most. It’s intensified by my PCOS, endometriosis and perimenopause too.
I believe therapeutic support should be offered at the point of diagnosis as standard.
Disturbingly, I recently saw a psychiatrist (not to do with ADHD) who shared that the NHS don’t have a budget to support adults with ADHD, because we got this far in life, so can continue ourselves.
I ranted on TikTok as to why this is so so wrong! Many late diagnosed have got this far using unhealthy coping mechanisms.
We’ve also gained much trauma along the way of trying to navigate a neurotypical world with a neurodivergent brain.
It’s also concerning how many professionals have zero or little understanding of how divergence presents, and how to support it.
Teachers, GPs and mental health professionals have shown me they haven’t got a clue, because training isn’t mandatory for these professions.
Which Therapies Help?
Finding a therapy that works for neurodivergent brains is quite tricky.
CBT is often offered by the NHS, but this was created from studying neurotypical brains so rarely works, unless adjusted by specialists.
Talking therapies can be difficult, because we can struggle to recognise and connect with our emotions well enough to verbalise them.
Somatic therapies and DBT are supposed to be more suited to our wiring, but the NHS don’t offer these in many areas.
So those who can afford to pay for ADHD coaching and therapies tend to have better after-diagnosis support.
I’ve managed to get a psychosocial assessment (after much questioning to the company who diagnosed me on behalf of the NHS), which requested my GP apply to fund 8 ADHD therapy sessions.
I’m yet to hear a response from my GP…
This has been quite a low point for me sadly.
I’d been excited at the prospect meds could help me, as so many across social media said their head instantly felt quiet on them.
I waited a few months after diagnosis before I was allocated a nurse, and 8 months on, I’m still in titration.
The first nurse was awful, and didn’t give me time to adjust to each dose before doubling it, so I complained and got a better nurse.
I’ve tried two stimulants and one non-stimulant so far, each with unique side-effects.
In terms of benefits, they help me focus to an extent, but they don’t ensure my brain focuses on the right things.
I can go down rabbit holes for hours on random things, instead of focusing on important things, so it’s no cure by any means.
My thoughts at times are more centred, but overall I’ve not had many benefits, so I’m now trying non-stimulants alongside them.
The side-effects of stimulants haven’t been nice; Increased anxiety and rage, hair falling out, face is ageing quicker and insomnia.
My sensory issues have increased, amongst other Autistic traits.
I assumed until recently the meds didn’t work, until I realised they might be reducing ADHD symptoms, and giving Autism space to show.
Medication doing very little is also apparently common for those with Autism and ADHD.
The Highs of This Year and What I’ve Learnt
This year has enabled me to finally start to understand and embrace who I am.
For years I believed I was stupid, incapable and a failure, because I couldn’t do what others found so easy.
I thought I was just a highly anxious, shy, awkward and moody person.
Many described me as lazy, rude, blunt and worse, but I finally understand that’s how my traits appear to untrained eyes.
Process of Unlearning
This year has started a process of trying to unlearn the awful things I saw myself as. Trying to stop referring to myself so negatively is a hard cycle to break.
My negative self-judgment’s reduced, often being replaced with logical understanding of how my brain works differently.
I’ve (slowly) been showing myself compassion when I make mistakes, forget to do things, get lost, run late and dysregulate.
Through spending time learning about the condition, I’ve been able to notice others around me that may also have it.
My partner was diagnosed a few months after me due to identifying with the things I’d shared with him!
I’ve managed to teach my son about neurodivergence, and we have enjoyed discovering how the traits affect the brain.
It helps him to understand the negative sides of my ADHD, which ensures he never takes my dysregulation personally.
Finding a Community
One of the greatest things is finding a community through publicly sharing my diagnosis and increasing awareness.
For once I don’t feel so weird and out of place.
I’ve finally found people around the world on social media to identify with.
By watching a couple of videos describing somebody’s traits, I instantly relate, feeling less alone.
That’s more powerful than I can put into words, and I’ll be forever grateful for this.
My Plans for Supporting My ADHD This Coming Year
Learning about which parts are traits rather than my personality or behaviour choices, helps me be kinder to myself.
This knowledge also helps me to explore ways to manage these traits.
When the psychiatrist confirmed the late ADHD diagnosis, he suggested I also presented with Autism.
Having both ADHD and Autism is common, with some studies suggesting 70% of people have both.
Many professionals refer to ADHD and Autism as siblings, as they have many overlapping traits.
I’m now on a (long) waiting list for an Autism assessment, and have started to look into how it presents.
I’ve completed various online tests that doctors use, read extensively into female Autism, and it makes sense.
I identify with Autism a lot, so I currently label myself as AUDHD.
I will continue researching ADHD and Autism and sharing my findings across socials for those interested in learning more.
In this case knowledge is definitely power.
Resources for Newly-Diagnosed ADHD
My TikTok, SingleParentPessimist, is where I share personal experiences about my late ADHD diagnosis and how it affects my life.
I have to include my own podcast (sorry), Mind Vox, which is all about the mind.
Topics covered relate to wellbeing, mental health, self-care and of course neurodivergence.
ADHD is often talked about, and I interview many professionals who offer advice and life hacks for living with ADHD.
The ADHD Adults Pod
This podcast has taught me so much about my condition, and it’s funny too!
The ADHD Adults is hosted by James and Alex, scientists who both have ADHD.
They provide the science behind ADHD, as well as their personal experiences of the condition.
Recently, James’ wife, Mrs ADHD, joined the podcast for a female perspective too.
ADHD As Females Pod
Dawn and Laura both have ADHD, and created a podcast to talk about the female late ADHD diagnosis experience.
They’ve also created a community for women to support each other, such as body doubling online to get tasks done.
A great resource full of articles written by doctors and ADHD specialists about child ADHD, adult ADHD, treatment and support.
The website includes quizzes to see if you identify with ADHD, Oppositional Defiance Disorder and many more relevant conditions.
The ADHD Adults have a great website (as well as their pod) which is full of resources and helpful information.
They also have a community where you can access support in their community forum on Discord.
No payment was received for this post, and all opinions are honest and my own.
Any statistics and research used includes a link to the source within the text.