Getting diagnosed with ADHD
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As you may have recently seen, I got diagnosed with Inattentive ADHD.
I've been having a few conversations about it since posting that blog post, and wanted to share publicly about my experience with the diagnosis process, to hopefully give some insight into it for folks who're interested in what it entails, as well as be something I can refer back to in the future.
This is very much my personal experience of the diagnosis process and as such I'm only sharing my viewpoint. Please let me know if there are corrections to make in case I've said anything that could be misrepresenting of ADHD, Autism or the process of diagnosis.
Note that I reference ADHD and Autism together a few times, because they have a lot of similar traits, and a number of folks who have one will have the other, too. Autism was something I had already considered about myself, but learning through this that some of the traits could be ADHD was interesting.
A hint of ADHD
Having ADHD wasn't really ever a thing I considered having, seeing the stereotype of ADHD as a hyperactive student disrupting the classroom, but over the last couple of years I've understood that these stereotypes of ADHD do not cover the wide range of experiences people have through friends and social media.
For a while my friend Carol's been going through the ADHD diagnosis process, and it's been interesting hearing about going through the process and her experience of undiagnosed ADHD. Although I didn't resonate with all of the experiences that Carol has had, there were definitely some times that they were very familiar.
The excellent speaker and ever wonderful Rachel Morgan-Trimmer speaks at conferences and meetups about being autistic, and a number of things she's said in the past have resonated with me, too.
I consume TikTok quite a bit, and over the last year I've been getting some quite pointed ADHD and Autism posts which are a great mix of insightful and humorous experiences that people go through.
With all of these little opportunities to understand more about the various forms that ADHD and Autism take, I twigged that it may be worth me looking into getting a diagnosis.
Pre-diagnosis query with therapist
After enough immersion of what ADHD and Autism could look like, I decided to speak to my therapist about it in our next session.
Before I pursued an official screening, my therapist mentioned that we'd be able to do a pre-screen, which would give us an idea of whether I would be scoring highly on some of the questions that it would make pursuing a diagnosis worthwhile.
The pre-screen included the following instructions, to which I went away and sent the results back to my therapist:
In each question please indicate NEVER RARELY SOMETIMES OFTEN VERY OFTEN
- How often do you have trouble wrapping up the final details of a project, once the challenging parts have been done?
- How often do you have difficulty getting things in order when you have to do a task that requires organisation?
- How often do you have problems remembering appointments and obligations?
- When you have a task that requires a lot of thought, how often do you avoid or delay getting started?
- How often do you squirm or fidget with your hands or feet when you have to sit down for a long period of time?
- How often do you feel overly active and compelled to do things, like you were driven by a motor
- How often do you make careless mistakes when you have to work on a boring or difficult project?
- How often do you have difficulty keeping your attention when you are doing boring or repetitive work?
- How often do you have difficulty concentrating on what people say to you, even when they are speaking to you directly?
- How often do you misplace or have difficulty finding things at home or work?
- How often are you distracted by activity or noise around you?
- How often do you leave your seat in meetings or other situations in which you are expected to remain seated?
- How often do you feel restless or fidgety?
- How often do you have difficulty unwinding and relaxing when you have time to yourself?
- How often do you find yourself talking too much when you are in social situations?
- When you’re in a conversation, how often do you find yourself finishing the sentences of people you are talking to, before they can finish them themselves?
- How often do you have difficulty waiting your turn in situations where turn taking is required?
- How often do you interrupt others when they are busy?
I recognised some of these as being questions that were trying to highlight Inattentive ADHD (such as questions 3 and 16) and some for Hyperactive ADHD (such as questions 13 and 18).
In our next session, we discussed the outcome, my thoughts around the questions, and then my therapist mentioned that I scored suitably that they recommended I seek a diagnosis, if I was still interested.
I was recommended by them to use MyPace, as they had found their services good in the past. As I like doing, I just went along with it instead of doing my research - which was fine in this case! - but not sure if it's worth shopping around, or asking neurodiverse folks you know for recommendations.
Now, onto the full diagnosis with MyPace.
I am fortunate that I was able to take a private healthcare route for this, but I know many folks go on the NHS, which can take quite some time. At the time I did this, the fee was £360 for everything for the ADHD diagnosis, which I paid fully out of pocket.
I decided not to go for an Autism diagnosis, largely because it was £1200 for the diagnosis, compared to the £360 for ADHD. I'd also considered that, at least to me, ADHD symptoms were causing more problems in my personal, social and professional life, whereas Autism symptoms were largely for my personal and social life.
If you're looking to get things covered by your Private Medical Insurance, it's worth checking before you start booking anything, in case you need to shift providers, or increase your plan's cover. And at the same time, remember that in the couple of days delay I had with booking my appointment, it ended up costing me ~2 weeks of appointment times!
I then made sure I booked in a slot there and then, remembering that my therapist had mentioned that they often have cancellations, so getting an earlier slot could be possible, too.
Once I'd booked in, I received a number of forms to fill out ahead of the appointment, which were similar to the pre-screen I did with my therapist, but involved a little more thinking and evidence giving.
I've put the full ADHD forms into a repo on GitLab for reference, but there were some questions almost exactly the same as the pre-screen, but required examples from my childhood and adulthood.
I found it particularly hard to go through this bit, because I needed to sit down and consider a few things - feelings, memories, etc, which is hard, and I need to be in the right frame of mind for. It was also difficult because I had a few weeks to keep putting it off, so as my ADHD brain likes working to a deadline, I ended up doing it two nights before my appointment 😅
As well as doing the forms myself, there was an ask to have someone close to you (an "informant") who can speak to either childhood or adulthood (or ideally both) and can give their own view of the impact of ADHD on my life. In this case, my partner Anna did this.
Ahead of Anna filling in her form, I was a teensy bit apprehensive about her point of view not supporting how I felt, because I'd heard someone who was not given a diagnosis because their view of their ADHD was different to the view of the informant. The questions can be quite subjective, it is reasonable to not be able to answer the same, especially when we each have different perspectives.
For instance, with the following question:
- Do they often lose things necessary for tasks and activities (e.g. school materials, pencils, books, tools, wallets, keys, paperwork, glasses, mobile telephones)?
In my answer, I said that this happened often, and:
if I don’t leave my wallet and keys by the front door, or my watch in the bedroom, it takes a while to search the house for where I'd left them
Whereas Anna saw this as a rare occurrence. This is a small annoyance, and not something I'll verbalise with Anna, so how is she meant to know that this is a common occurrence?
Although mine and Anna's forms did not end up corroborating in the end, the clinician I saw was happy with this after going through the interview process.
With the forms submitted, it was then a case of the appointment I'd booked several weeks before, where I virtually met with a clinician for an interview.
The interview was mostly a chat, where the clinician wanted to understand a bit more about me and my childhood and adulthood, and how ADHD may have impacted it, with questions ranging from:
- what led me to getting diagnosed
- why did I seek a private diagnosis over NHS
- through to looking at whether there were any physical/mental health issues in my family, that could inform whether getting medication may not be the best
- digging a little into my childhood, asking things such as whether I was born prematurely, was particularly late for any of the major milestones, like speaking
- was I a naughty child?
- was I a good student?
- did I find that my personal life and work life were affected differently
I thought this was really good part of the process, as it gave time for understanding a bit more about me, rather than simply focussing on the answers I gave, which could be taken quite subjectively, and didn't give a full picture of who I was as a person.
I'm a little disappointed I didn't make a copy of all the questions I got asked in the interview to be able to share them for others to think about.
Something really great was that I got diagnoses on the day. I wasn't sure what would happen, nor was there particularly good documentation around it, and whether a diagnosis would be done on the day, or if follow-up appointments were required.
Fortunately, I got the diagnosis ~45 minutes into the 60 minute appointment, where I was told I had Inattentive ADHD, and was given time to discuss what that meant, and how it compared to other types of ADHD. There was time to discuss any other questions I had around ADHD, and we briefly discussed how I would like to proceed.
For me, a large part of the diagnosis process was just knowing. Being able to attribute a large amount of the way I operate as a person to ADHD was something I wanted to get out of the diagnosis, and as I discussed with the clinician, I didn't want to proceed with medication, as I felt I should start by making changes in my life that could better support this new knowledge.
How long did it take?
I found it a pretty OK experience, and it was quicker than I thought, taking about 6 weeks start to finish.
For a timeline of events for the diagnosis process:
- 2022-08-11: Received the pre-screen from my therapist
- 2022-08-17: Booked appointment with MyPace
- 2022-09-17: Appointment with MyPace
- 2022-09-28: Letter to GP submitted to me for review
- 2022-09-29: Letter to GP submitted to GP
I'm still working on what it means to me, and how I can adapt my work around it, as well as informing my colleagues what can work best for me to be most effective when working with them.
I hope this helps share my personal journey through the diagnosis process and may help demystify what it could look like to get a diagnosis for yourself.
Funnily enough, I'm fixating on this post instead of doing the assessment forms Carol asked me to do a month ago 😅
If you have any questions/thoughts/corrections, please drop me a line through the contact details below.