What it was like to get an ADHD diagnosis.
By: Sarah Bridgeman, Senior Coach, 3SC
19th January 2024
It started slowly, the realisation that there was a good reason I had certain struggles. I had always put my procrastination, impulsiveness, and lack of punctuality, down to something we all struggle with. I reasoned that I was also able to complete a large volume of work quickly, was creative and up for a challenge. We all have good and bad parts of us, and it evens out overall, I thought, so what was the problem?
Some aspects of my behaviours were good, but my all or nothing approach to most tasks was stressful. I just couldn’t bring myself to get started on difficult or boring tasks unless there was an element of risk or excitement, and this had caused problems historically.
I now know that these are just some traits of Attention Deficit Hyperactivity Disorder or ADHD for short. I decided to gain a diagnosis and although I’m glad I did, it has been a long and emotional process.
Here are some of the surprising parts of gaining a diagnosis that isn’t often talked about, based on my experiences as well as the anecdotal experiences of some of the neurodivergent clients that I coach.
The dawning realisation
I had no idea I had ADHD which is described as a condition by the NHS, which manifests primarily through your behaviour. To be diagnosed, you must display the behaviours before the age of twelve. I was around 47 years old by the time I had done enough research and online screeners to know that I may well have ADHD, even though, I had displayed many of the behaviours from childhood.
Often, neurodiversity isn’t picked up earlier, as from an outside perspective, the child appears to be ok. Often it is only picked up that something is wrong if there are extreme behavioural issues such as the inability to sit down in class or being disruptive. However, for many children, the condition affects us inwardly. I am hyperactive but only because my thoughts don’t switch off. I am also inattentive meaning I miss out steps on instructions as my brain is often racing to the end. These traits are less obvious. We don’t really know that our brains are different to most people. We are trying hard with things such as being on time and focussing on schoolwork. For many of my clients, they are adults by the time they knew that they are struggling in ways that most others aren’t.
ADHD has been a hot topic lately, but my journey to diagnosis started around 10 years ago when a close friend went to get their own diagnosis. We were having similar problems and I thought do I have ADHD too? It wasn’t until a few years later that I decided to look further into it.
When I started working with clients with ADHD, I did a lot of research. This is a common journey for many neurodivergent people. We do so much research in fact that by the time we go for a diagnosis, it is highly likely we will get a positive outcome. It was from the result of my research and through learning what was happening for my clients, that I knew I couldn’t ignore the signs any longer. I completed some free online screeners, which showed I was showing traits and should explore further.
I couldn’t believe it at first and I wondered what did it mean for me? I was fearful that having a diagnosis could have negative consequences. The term has only been around for a few years. I left school over 30 years ago, so I remember when some kids with conditions such as dyslexia, ADHD and autism would be in a ‘special class’ and be thought of as having special learning needs aka less than others. Of course, I now know that this isn’t true, we have a spiky intellectual profile, which in terms of IQ, means, it all evens out in the end, but I didn’t know this at first. I didn’t want to think of myself as ‘having something wrong with me’ or treated differently and I worried what it meant for me in terms of my intellectual abilities, despite having gained a degree!
To get a diagnosis or not?
It took a long time to come to terms with the possibility I could be neurodivergent, and even then, I wasn’t sure what good a diagnosis would do.
Here are some things to consider if you are thinking of getting a diagnosis:
- What will a diagnosis do for you?
- Once you have one what difference will it make to your life?
- Would you share it once you get one?
- If so, how would you manage other people’s reactions?
After much deliberation I decided to get one for two reasons. One, I knew it would be useful for work. I would be able to share more about my lived experience, and it would help my clients to know that their coach was neurodivergent. Two, I wanted to try medication. If you are undiagnosed, you tend to self-medicate and my ‘drug’ of choice was food. As I was getting older, it was having a toll on my health.
However, a diagnosis isn’t necessarily right for everyone. Some people know they have these struggles but don’t want the ‘label,’ some worry about how others will perceive them, and they are not wrong to worry about it. Organisations are now coming around to the concept of neurodiversity, but many people that work for the organisations are still biased against the neurodivergent. According to ONS only 22% of UK autistic people are in paid work at any one time. According to Europarl, this is an even lower statistic at only 10% worldwide. If you’re thinking oh yes but think of all the extra help and adjustments, a business needs to make – I guarantee that you have met many people in your life with autism, but you wouldn’t necessarily know it. Women with autism can mask so well that it is only in recent years that the research has shown that women could even be autistic. Some adjustments could be as simple as giving notice if there is reading required for a meeting or being understanding that a person may come across as blunt in their language.
It is worth noting that, once you get a diagnosis, not much actually changes. You get a confirmation of what you had thought, and, for some you get a sense of validation, that I’m not lazy, crazy, or rude, that this is a real condition. However, what you do NOT get is a new brain!
ADHD meds can help but aren’t for everyone and there are no medications for autistic or dyslexic adults. For dyslexia, depending on the type, there are specialist glasses that can help and tools to read for you or help you to focus on lines of writing, but that’s it. You are still living with the condition and many of the issues are caused by the lack of understanding of your behaviour by others and the modern way of working. For example I had a dyslexic client who was open about the condition, and explained she would need at least a few hours, in order to read materials for meetings due to the processing challenge she faces, and yet people would forget and still present long documents expecting them to be able to skim through and answer questions in real time in the meeting. This caused a great deal of anxiety for my client. The organisation is better now that we have worked with them and shown the stress this is causing, but often places expect you to advocate for yourself and it can be a battle.
Before diagnosis, really think about what it would do for you afterwards. You don’t need a diagnosis to get Access to Work support. In my experience, many organisations will accept self-diagnosis.
Getting the diagnosis
There are two ways to gain a diagnosis. Either through the NHS or privately. With the NHS, you start the referral process through your GP. They cannot diagnose you directly, they refer you to a psychiatrist or specially trained mental health professional. This is why a GP will want to know why you think you are neurodivergent so they can make the decision on whether to spend the NHS resources. They may give you a screener to complete.
I would recommend preparing for the appointment and writing down all the reasons why you think you are neurodivergent and take it with you to the doctor’s appointment. If you are unable to get your words out, which is a common problem amongst neurodivergent people, then you can give them the notes to read. If they agree they will refer you to the psychiatrist or mental health team. There is a long wait now. Some people are waiting for years for an appointment.The second option is to go a private company.
You can get diagnosed much quicker, but there are still queues and it is expensive. It can cost up to £1000 for an ADHD diagnosis. A dyslexia diagnosis can be around £500 and then autism diagnosis somewhere in between.
You must make your own decisions about whether diagnosis is right for you.
Once I had my diagnosis, I had regular meetings with a titration nurse. They helped me to find the right medication for me. I’m pleased to say that the medication worked well. I now focus and concentrate much more easily and as a result I am more organised and can work on things as I go, I don’t wait until the last moment. I have far less struggles with processed food. I do still struggle in certain situations, but these are easier to manage. I have to say that this was alongside the coaching strategies I have learned over the years. Medication is good but it works best with the combination of knowing myself well, knowing the strategies and knowing when to apply them. Coaching can massively help you with this. I have had clients that have found the support the coaching gives them life changing.
A big downside is the cost. Medication costs around £100 a month. I paid for 3 months until I was lucky enough to get shared care through the NHS. However, if I need to make any changes to my medication, I have to pay the private company around £400 for an annual subscription. That’s just with the company I used. The costs vary between organisations and private psychiatrists. Now I have medication, it is the same as someone needing glasses. If a short-sighted person needs to see, they can, but it’s not as easy or clear without glasses. However, there is a shortage of my medication due to a manufacturer issue, so I am now having to manage without my medication support. This means I need to be careful with my energy and have reduced social commitments until I can get my meds back more regularly.
As mentioned elsewhere there are no meds for autism and dyslexia. You get a report stating what the challenges and positive traits are and a few links for support. If you want more support you must find, and fund, it yourself. If you are employed or self-employed, you can get Access to Work support. Go to www.gov.uk for more information.
What has diagnosis given me and was it worth it?
Diagnosis has helped me to make sense of my behaviours and the medication has helped me with my home and work life. I slowly told friends and family, who were mostly understanding, but weren’t sure what it meant in a practical sense. It doesn’t stop them getting frustrated when I’m late, even though I hope they know I tried hard not to be.
As a result of the diagnosis many things have changed in my life, overall, it is positive and I am glad I got one, but it has involved a lot of self-analysis. I have improved my personal boundaries and can manage my energy and behaviours far better than before. I am also able to state what I need more in work such as needing more information for work that has been requested or a deadline as these help me to get the work done.
It is good to put a reason as to why some things are a struggle, but I could do that without the diagnosis, and it doesn’t mean those struggles go away. I still must learn the strategies and put the work in to overcome them, as it looks like society still has a long way to go in understanding the neurodivergent challenges. As mentioned before specialist coaches can benefit you enormously. Whether it is worth getting a diagnosis really is a personal decision and not to be taken lightly.
Thank you for reading. I would like to thank the NHS; their website is a great place to start to make sense of your condition. Also, ADHD UK has a fantastic website as does The Autism Society. Of course, I want to thank 3SC for being a great Neurodivergent friendly company to work for, it makes such a difference in being understood.
3SC can help your organisation support your valuable neurodivergent employees.
Please contact us to start your journey.