Why do you need a diagnosis? Adult ADHD diagnosis is important and this is why.
It's simple. It is about your quality of life and your health and wellbeing. It's about furthering the visibility of ADHD, and improving acceptance and access to care. Things can be so much better.
One of the questions I see most across ADHD spaces on social media is: Do I need a diagnosis? I have got this far, what difference would it make?
The difference it can make is enormous. You deserve it. You can have a better quality of life and you can embrace yourself as a whole instead of hiding your ADHD deficit. I hate the word, but it’s the accepted term. We don’t talk about neurotypical deficit, do we? But it most certainly exists, it is just accepted as normal in a way that a neurodiverse deficit absolutely is not, because society is built to manage neurotypical deficit and societal structures exacerbate ours.
Getting a diagnosis for Adult ADHD is important. Not only does it give you a bright and initially admittedly sometimes murky insight to yourself, a diagnosis means that you can access treatment should you want it. You can seek adjustments at work and in education that you are legally entitled to. Most importantly you can work to understand and accept yourself in the light of this new knowledge.
The ADHD diagnostic process is designed by neurotypicals and it shows
The diagnostic process seems designed for neurotypicals. It is off-putting and makes no sense but it is what we have. Your first experience of discrimination with the fresh knowledge that you probably have ADHD is often when you seek help and diagnosis.
To get a diagnosis you need to book appointments with medical professionals who often act as gatekeepers for the very services you need. It feels like they are viewing you as an expense as opposed to a person in need of care. You feel that. They often tell you that too.
In the UK budgets need to be approved at CCG level and we are told that we, as relatively functional adults who may have ADHD, are less deserving of treatment. We are seen as more functional because we did not end up in prison (where unfortunately many undiagnosed ADHD people can end up). But, every person, who is suffering with something that is manageable and treatable, should be a priority. In a system that works.
We are often told we have got it wrong
We are often told when we approach our doctors looking for help around suspected ADHD, that we don’t have it. We couldn’t have it, even. Often doctors still think that adults can’t and don’t have ADHD. We are told that we have got it wrong. It feels like we are being told that we don’t know ourselves. Why? Because that is exactly what they are telling us.
In some extreme cases there is gaslighting by the medical profession. Like every profession there are brilliant, empathetic and forward looking members, and, as with every other profession, there are others who are not. My psychiatrist was great, my friends psychiatrist was awful, and would not acknowledge what she was saying and the consultation was harmful for her.
I was raised not to question my doctor, that they knew best. It was the culture. That is not how it should be. It should be an interaction, a conversation, with an open minded doctor taking what you say on board. They can understand what they know, but they need to understand what you know about yourself. We need them to be open-minded, up to date in their knowledge, and to listen.
The medical profession is not perfect or faultless
Patriarchy in the medical profession is a big issue too and women know that when they are describing their mental health struggles to their doctor, some doctors have labelled them internally as a hysteric, and are ripe to blame their hormones (and yeah, they are involved, because they are involved in everything).
Somehow some doctors think that we actively want to be labelled. We just need a label of ADHD. Truly, they don’t understand ADHD if they think this, we hate being categorised and pigeon-holed. They have it so wrong.
What is wrong with wanting to know that you have ADHD? To have it confirmed? It is so helpful. It is even necessary in our society. You can find your community and become part of it and you can relax in those spaces and learn from each other.
Instead your doctor will often offer you a prescription for antidepressants and tell you to go home. That can be crushing. We need to stay strong.
You worry you don’t have it in you to push forward
You may have convinced yourself that you don’t need a diagnosis, and that it is a lot of hassle that you don’t have time for. This is fair. The thing about having undiagnosed and unmanaged ADHD is you are just SO TIRED ALL THE TIME.
That brain going around it’s formula one track all day long (in neuroscience terms it is called the default mode network) is relentless and exhausting. But, you can do this. Don’t be afraid to ask your trusted friends and family members for support. An ADHD advocate friend of mine recommends bringing someone you trust to your appointment with you.
The reality is the way we have to go about getting an ADHD diagnosis requires a lot of admin, and chasing and appointments. Get help if you can, or find a way to prioritise it. Ask a friend to help you by putting it in their diary too and reminding you or just giving you a regular pep talk, to boost you up. Don’t mistake this as fragility, you just need support with things that are hard for you in a time of crisis in your life.
It is hard but not impossible. Remind yourself that you can do hard things, because we have been every single day of our lives, just getting through the day. Then we need to be honest with ourselves, often the real barrier is our own fear.
Let’s stop limiting ourselves, it’s time.
Don’t let imposter syndrome take the wheel
Imposter syndrome is very common with ADHD as is low self esteem. It is no surprise that after a lifetime of intense negative messaging about your ADHD traits, that we start to develop negative self talk, and can lose faith in ourselves. We can be inclined to accept a doctor’s denial and negativity, and retreat. Not just doctors, people around us too, they can be a real source of denial and negativity about ADHD. It can consume us.
We mustn’t do this. We have to self-advocate and fight, even if we don’t think we have it in us. It is hard because you often need to persuade your doctor about what is a very emotional issue, at a time of crisis when things are very bad. This is hard for anyone but when you have issues with emotional regulation and poor working memory like we do, it’s another level.
Why diagnosis was important for me
Diagnosis has allowed me to understand who I am, strengths first, deficit later, and to embrace it. It allows me to put my deficit to the rear, and tell it I will deal with it later. I see it there, I know it is causing me problems, but I don’t feel like it is a character flaw now and I try not to let it dominate.
I can tell the deficit that, right now, I need to lean into what I am good at, so please just stay quiet there for a little while. I can focus on my work, and that strengthens my sense of self and reminds me who I am. Starting to achieve things again gives me resolve to do the deficit stuff also.
I see you taxes, piles of laundry, everything that needs to be fixed and is being ignored, the piles of bills that need to be paid, bank statement, hair that needs to be dyed and cut. I now know why I really hate to sit in a hairdressers chair. The time stuck there when I just want to move, that awful inertia, the small talk which I really can’t deal with, the sensory issues (the smells, pulling on my hair, water that is too hot). It’s too much.
I also see you: bright, enthusiastic, optimistic, open, friendly, curious, socially-conscious, inclusive Niamh. You are alright aren’t you? I see that no matter what, you are always trying. It’s all you can do! I didn’t value you enough before because with everyone else being obsessed with the deficit, I became obsessed with it too.
Undiagnosed and unmanaged ADHD holds us all back, and not just as individuals
If you have ADHD to a degree where it is affecting you day to day, and you don’t know how to manage it, it is absolutely holding you back. You won’t realise how much until you are on the other side of it.
My experience is everything I learn to manage better, or even acknowledge, reveals something else that I hadn’t really noticed before. But at least now I am moving in the right direction, and not stuck, like I was before. So, I will take that, and give myself a clap on the back for it.
Undiagnosed and unmanaged ADHD takes a toll
We need to be seen for what we actually are, not othered because of what people think we are or should be. Don’t allow other people to define you, those definitions are often steeped in prejudice and judgement. We are othered by ourselves too, because we are desperately trying to fit in as we were forced to for so long. Many of us have spent our lives masking without even realising, and that corrodes us.
That makes us sick. Ableism harms us. So, we must make sure that we are not a part of that and further, if we can, we should be advocates for our community making space for us to exist comfortably in spaces that currently struggle with that. Workplaces, social spaces, every space.
The current ADHD stats cannot be right
Right now the consensus is that ADHD affects 3-5% of children and 2% of adults in the UK. This is based on the very limited amount of people who have had access to ADHD diagnosis.
Women and girls have been mostly ignored until recently as has anyone with an inattentive presentation. Genetic research on twins with ADHD says that there is no genetic difference between males and females with ADHD, so that says to me that we are just not being seen.
I expect that the real number of people with ADHD is much higher. Based even on what I just see. and really, you start to recognise ADHD everywhere. Almost every comedian, for a start! Many creatives too.
Scientific research is focussed around what they know, and that includes who gets diagnosed
Diagnostic statistics heavily influences the research that scientists undertake and the investments that governments and health services make. These statistics stress whether something is a priority or not. Most of the current ADHD research is on men and boys. This means that most drugs were also designed for them.
The impact of female hormones on ADHD, which is huge, does not seem to have been considered. Outside of telling us that that is just the way it is, and we have to deal with it. As women have been told this about everything since the dawn of time. Doctors should be forced to take us more seriously. We need to demand better rights, supports and integration.
ADHD treatment is not accessible to everyone, and that is wrong
Right now in many places (certainly much of the UK and Ireland), access to treatment involves long waits or a lot of money. This isn’t ok. This is active discrimination and prejudice. Healthcare systems need to recognise the seriousness of this and put more resources into the issue.
We need more psychiatrists, ADHD specialist psychotherapists, psychiatric nurses and occupational therapists. Hey! Here is an idea. Just take us seriously, diagnose us and train us in these roles. Not compulsorily, of course, but many would choose it. We would be great in those roles with our empathy, flexibility and smart brains! ADHD care needs to be taken a lot more seriously and it needs to be more available, and in a timely manner.
We need more accurate and accessible diagnosis, and better more diverse representation in the statistics of who actually has ADHD. Many people in the medical profession still view ADHD through the lens of stigma and consequently judgement. This gets more difficult across different slices of society too. Many ADHD deficits fall too easily into social and race stereotypes, and this limits access to diagnosis and care (and a lot of other things).
An inclusive society is a healthier society, all round
Accurate and inclusive diagnosis of those with ADHD will not only benefit people enormously, it benefits society as a whole. People with ADHD are enormously capable and have skillsets outside the norm.
With treatment we can take up active roles in society. We are often excellent problem solvers, crisis managers, creative thinkers. We make great scientists and entrepreneurs. Philosophers, inventors, writers, psychiatrists! It is an endless list. We have a lot of potential, and so much of it is untapped. We think differently and that is a very good thing. We also get things done when we are not dominated by our deficit.
It is of benefit to all of society to take ADHD seriously
A society that takes care of the people within it is a healthier society. Imagine a society that recognises the links between undiagnosed ADHD and depression and anxiety, fragmented careers, higher rates of divorce, financial problems, eating disorders, addiction, crime and higher rates of suicide? Imagine catching that in childhood and preventing it from happening?
People with ADHD have shorter lifespans (by some estimates, 14 years shorter). Especially when undiagnosed. Accidental death happens because of impulsive behaviour and distractions. Our many co-morbids can shorten our lifespans too.
It is exhausting to get up every day and fight the same fight. Combine this with other difficulties and it can all get to be too much. We need to get to the point that when someone presents with an eating disorder, addiction, persistent depression and anxiety and other associated co-morbids, the GP knows to check for ADHD.
ADHD and times of hormonal change for women
Times of hormonal upheaval exacerbate ADHD for women because oestrogen and progesterone both have large effects on our ADHD brains (I will cover this properly later). Research indicates that women with ADHD are more sensitive to lower oestrogen levels and that women with ADHD are more likely to suffer from mood disorders associated with our menstrual cycles (PMDD), pregnancy (postpartum depression) and menopause.
We need to get to the point that when a woman presents with symptoms of a mood disorder in puberty, at the time of pregnancy and after, during menstrual cycles and at the time of menopause, that doctors know to screen for Adult ADHD too. That they are screened that week, because these can be crisis issues.
Can doctors please stop normalising that women need to endure pain and mental distress? Because we shouldn’t have to. This is barbaric. Understanding the fact that I have PMDD along with ADHD and that both interact with each other has enabled me to learn to manage that 2 weeks of every month better. It is still difficult, but at least I know what is happening now, and I can access treatment.
Give ADHD people access to treatment and watch them change the world
People with ADHD are excellent problem solvers and creative thinkers. Imagine catching ADHD in childhood for everyone and focussing on the strengths? Imagine having a generation of empowered ADHD kids that learn to lead and not hide in the shadows? That learn to be, that learn to grow and be their full selves, to celebrate their worth and their skills?
It could be extraordinary. It should be. It can be! Let’s change this.