Why ‘ADHD doesn’t exist’ and ‘ADHD is over-diagnosed’ feel like hate speech

Saying things like ‘ADHD doesn’t exist’, ‘ADHD is over-diagnosed’, and ‘people use ADHD as an excuse for poor behaviour’ can feel like hate speech to someone with ADHD. To someone like me.

Hate speech, intentional or not, is any form of communication that attacks, threatens, insults, or degrades a group or individuals based on inherent characteristics like race, religion, sexual orientation, gender, or disability. And, I would like to add ‘or neurotype’ to this list.

Yes, there are a lot more people being diagnosed with ADHD recently (I’ve mentioned some of the reasons for this towards the end of this blog) and yes there is a shadow side to diagnosis (that’s another blog topic to come) but please read and consider this before you next go to say something along these lines. 

I am going to break this into feelings and facts. Feelings are what I do best so I will start there.

For and from the heart: how it feels to hear these statements

When I heard these things being said recently by people in my inner circle, I felt an overwhelming combination of rage, shame, doubt and insecurity all at once along with an old familiar feeling of rejection from the tribe.

I have coached myself back out of this perspective once through my dysphoria (a state of emotional overwhelm). I know the people speaking to be good, caring and kind people and that these statements are only part of what they said and context matters.

But, at the time, I felt like I received a punch in the guts and the carpet was being ripped out from under me. My heart started racing, my head started spinning and I felt sick.

My inner critic, who I try to keep in the corner of the boxing ring these days, was quick to don it’s gloves and jump back into centre stage with quick jabs, old lines like, ‘Yeah, there’s no reason for why your brain struggles to perform – it’s just you. You are dumb. You are stupid. You are alone and no one understands you so get your shit together. No one cares about you and your feelings are not welcome here.’

The line about behaviour – that people use ADHD diagnosis as an ‘excuse’ for poor behaviour, that one always sends me reeling.

It often sends me right back to school where I was forced to ‘follow rules’ that I didn’t understand and found really difficult and where I was judged against criteria that didn’t really work for me.

Like being asked to rote learn times tables when I have and always did have (even before perimenopause) weak working memory.

Like being forced to sit still when my legs were shaking and my heart was racing.

Like being sent out of the classroom for asking too many questions.

Like being told as a fresh faced, innocent, kindergarten kid to ‘stop being a ‘smart alec’ and just get in line, NOW’ when I asked a teacher what she meant by ‘form a line’. I worked it out once I saw enough other kids doing it, but I remember feeling really upset and shamed by that teacher. I still feel the blush on my cheeks, and I still recall the confusion as I had never been asked to ‘form a line’ before. I recall thinking ‘what does she want me to do? Draw it on paper? But I have no pen or paper… lie down in a straight line? Stand straight with my arms by my side like a soldier?’. Anyhow, I digress (again ha-ha). Suffice to say – it’s easy to mistake genuine confusion or disfunction or dysregulation as ‘poor behaviour’ from the outside.

I spent a lot of my life struggling with how my brain works without really having any support or understanding and definitely no language to explain how it is. I was coping ok through unconscious masking and survival strategies until perimenopause hit me like a truck and I needed more help.

A mid-life diagnosis has given me access to a community of people who ‘get me’ and a whole lot of words that validated my experience (Rejection Sensitivity Dysphoria, weak working memory, highly sensitive, time blindness, low dopamine, sensory overload…) I personally decided I could do without the medication (I tried it but found it changed my personality too much.) But the support of a diagnosis, and with it a sense that I finally belonged in a tribe really gives me a strong support and helps me get my needs met. And yes, there is a sense of identity that comes along with a diagnosis. And yes, that has its own dangers. But that’s for me and each individual to manage for themselves.

When I hear phrases like ‘ADHD doesn’t exist’, from people I don’t know or don’t need to interact with, I manage to bolster myself by thinking they don’t know any better. But it takes energy to not take it personally. Which is why, when I hear these words from people that know me or that I work with, and I have my guards down, I feel belittled and dismissed, or at worst, and in the heat of the dysphoria, attacked.

For and from the head: some facts and theory

For this part I want to thank my colleague, Kate Keenan whose words I am pretty much using verbatim (with her permission):

The evolution of diagnostic criteria

Conditions like Autism and ADHD were previously defined by very narrow, extreme traits. The sift to a ‘spectrum’ model recognises that neurodivergence manifests in diverse ways.

Diagnostic criteria were previously designed around the most visible high-support needs. If you could hold a job or make eye contact, you were often excluded.

The shift to a spectrum model – and the 2013 DSM-5 update that finally allowed for dual ADHD and Autism diagnoses has led to more diagnoses (and more accurate ones as well).

Identification gap

Historically, our understanding of neurodivergence was almost exclusively based on young, white boys. This created a huge identification gap.

We now know that women, non-binary individuals and people from different racial groups often present differently and often mask any neurodivergent traits. The rise in adult diagnosis, particularly among women, is simply these people finally getting the answers they lacked in childhood.

Cultural awareness and reduced stigma

Social media platforms have increased awareness and understanding of what neurodivergence is and reduced stigma. This has encouraged more people to seek diagnoses after seeing their lived experience being reflected back to them. Coupled with a slow shift from the medical model of disability (treating a disorder) to a social model (accommodating a difference), the stigma has lowered enough for more people to feel safe to seek diagnoses and to talk about it and share their experiences.

The modern environment

Our ancestors didn’t have to navigate a modern world which is fast, loud and digitally demanding.

We now navigate open-plan offices, 24/7 notifications and constant sensory input.

These things do not cause neurodivergence, but it makes the challenges of a neurodivergent brain more visible and harder to manage without support. These traits have always existed, but our current culture makes the challenges associated with them much more visible, necessitating formal diagnosis to access support and workplace accommodations.

Some questions and prompts for further pondering

Before saying things like ‘ADHD doesn’t exist’, ‘ADHD is over diagnosed’ or ‘people use ADHD to excuse poor behaviour,’ please pause and perhaps ask yourself a few questions like:

·       Why do you need to even say this?

·       Do you have authority (personal experience or actual data) to be saying this?

·       Could saying this cause further harm to people who are already struggling?

·       Why does it matter, to you, whether ADHD exists or not?

·       And why does it matter how many people have or don’t have it?

·       Who is to judge what ‘poor behaviour is’? (Defining behaviour is inherently complex because it’s subjective and contextual and is often used to reinforce power structures. Plus, assumptions can be dangerous.)