When did we stop listening?

"This message is so simple, yet it gets forgotten. The people living with the condition are the experts."

-Michael J. Fox

A young child appearing to sing or scream in to a studio microphone

One of the reasons that I am late diagnosed/confirmed ADHD is because for a long time I did not feel like the diagnostic criteria was relatable. I have always felt that I am often a square peg in a round hole or that my ideas of the world do not always match the thinking of those around me. I also know that I cannot sit still and I take on way too much at once; ultimately ending up sick. I have two diagnosed autoimmune conditions but that has rarely stopped me. In the past I explained all these things away knowing that I was like other family members or that the standard in my household growing up was to achieve. These still remain true.

It was only when I read a facebook post of comedian Em Rusciano that I started to see a list that was relatable. The one item on that list that I remember distinctly was not being able to follow a recipe. I mean, why would you need to read each step? Winging it is way more fun and a meal is always produced. I recall reading the list aloud and saying to my eldest daughter that I could be ADHD but I am not hyperactive, to which she promptly and sarcastically replied, "Have you seen yourself clean?".

In a recent blog post I listed the things I would love the world to know about ADHD. This list was formed through hours of hearing from ADHD clients, from my own lived experience and from a lot of reading, podcast listening and training to learn more about ADHD; for myself, my kids and my clients. What my learning has highlighted for me is a deep resistance that I feel to people telling me about ADHD, or my physical health, without really hearing me or taking time to understand my experience. I have also heard from many clients who have felt dismissed, invalidated and unheard by medical professionals.

My two autoimmune conditions were diagnosed in my late 30s and 40s after spending most of my adult life going to doctors, trying alternative remedies or different diets or exercise, not drinking etc. I have been told numerous times,"You are just run down", "You are a young mum, you are going to be tired", "You need to cut down stress in your life" (stifle eye roll). I now know that my health issues are directly linked to my ADHD.

Now, as a confirmed ADHDr I am being told that I cannot focus because I need to chase dopamine (another eye roll stifle). What I know about dopamine from my early psychology study (and more recent reading eg. Baik, 2020) is that it has a function in getting us motivated and moving but it is also has a function in our stress response and soothing. While I am still reading the research, my working theory is that we are low in dopamine because the world is way too overstimulating for our busy minds. Couple that with a world that does not trust that we know what we are doing because we do things differently or that our way of doing things works. We are assessed as functioning (or not) against a criteria that defines a so-called "normal". As a result, our sympathetic nervous system activation (fight/flight) is kicking in more readily than it should.

I have read many statements that start with "The research shows..." but do not caveat that research can be biased. By its very nature, research can be limited because you need a research hypothesis that has limited variables so that it can be proven or disproven more readily, without too many complicating factors. Research also has to be testable, meaning that if the same or similar experiment were conducted it would reap similar results. Most of the research on ADHD focuses on the deficit our minds apparently have in comparison to how it is believed a normal or neurotypical brain functions. I am yet to find research that explores the incredible capability, capacity and resourcefulness of our minds. I await the day that research exists that proves the value of our minds. I am relieved, at least, that recent research has demonstrated that ADHD involves our whole body not just our brains.

One of the first things I was told when I started my counselling study was "We are not the expert, the client is the expert of their lives". When I work with ADHD clients using a neuro-affirming approach, I encourage them to map their ADHD profile and identify what they know works for them and what does not. I ask them to look past what is expected and plot their natural rhythms, processes and timing, even if they do not make sense to others (especially if they do not make sense to others). Without fail what follows is a joyous conversation about all the weird and wonderful quirks they have, systems they use and the funny experiences they have enjoyed. These are coupled with the intense frustrations they feel when they are told they are wrong, only to have to suppress the desire to say "I told you so" when they turn out to be right. So many ADHDrs I work with are secretly proud of their unique way of operating and the successes they have achieved despite the obstacles. They also hold a lot of heavy hurt at what they have not achieved because they were not supported or understood as they needed to be.

I have always been determined to pursue what I know to be right for me. I have also spent many years doing what was not because I succumbed to the expectations of others. I have an honours degree, a masters degree, I have built my practice from scratch and continue to run it on my own, I have designed and project managed the renovation of three properties all while raising three late diagnosed ADHD kids, having chronic health conditions and unconfirmed, unsupported and unmedicated ADHD. So, when I read or hear that ADHDrs need to set goals or have reminders or that we procrastinate and we are only motivated by what interests us I want to scream "Piss off!!".

The ADHDrs I know can, and have, achieved great things. They may not stay that course for long but that is because they have set their sights on another challenge to conquer. They are very productive members of society. They also have the strongest inner critics I have encountered.

It may look like ADHDrs leave a trail of destruction and unfinished hobbies in our wake but what is missed is our ability to master a concept or a skill without needing to complete every step. We reach the finish line quicker and then circle back around to take in more if we feel the need. We are frustrated at being told to slow down when we are the ones having to wait patiently, and respectfully, for everyone else to catch up. We are told we do not have attention to detail, like dotting i's or crossing t's but what is really happening is that our minds are focused on all the other detail that people are missing when they are dotting their i's and crossing their t's. I stopped dotting my i's about a decade ago because they seem redundant and slow me down. I only cross t's because if I did not they would be an L.

The non ADHD world may continue to spend their time becoming so called experts on ADHD without listening to the real experts. Sadly, they are missing out. While they do that I will be sitting here waiting for them to catch up and realise how bloody brilliant we are. I will also continue to advocate for and empower clients to trust their own genius.

Baik, J. H. (2020). Stress and the dopaminergic reward system.Experimental and Molecular Medicine,52(12), 1879–1890.