Hi friends,
On Monday, I published this post. I wanted to explore my knee-jerk reaction to the recent spike in ADHD diagnosis, partly triggered by a massive uprising in social media content. It’s concerning because more than half of TikTok or Instagram posts about ADHD are misleading.
I also talked about my brothers, both diagnosed with ASD. In truth, I think this is where my annoyance comes from. As an old friend articulated for me the other day:
I think one of the things that people with your complicated history must find difficult is the suddenly popularity, encouragement and trendiness to get the diagnosis when for years, those living with ASD especially have been relegated to the margins. The “trend” of neuro divergency has done a lot of good to highlight the world from that lens but it’s as if it took having a bunch of privileged and notable individuals receiving a diagnosis to give it the attention and somewhat diminishes the struggle of those whose neurodivergency is not at the “trendy” spectrum and makes it seem like a new wave of discovery when in truth, individuals like your brothers and your family have lived with it long before it was trending.
That’s it, exactly.
But of course, my original post didn’t foreground that: in part because I didn’t realise it at the time and was trying to figure it out. The result may have been alienating to some readers.
I’m a long-time disability advocate and mental health advocate. You are always safe to share and discuss your journey with me. But I completely understand how my last post may have made you feel unsafe. That saddens me greatly. And I sincerely apologise for it.
To add more depth and complexity to this conversation, I wanted to share some fantastic responses and conversations I’ve had from various people.
I hope the conversation continues, and I’ll be back in your inbox on Monday with something completely different.
Cheers,
Dave
Maddie, artist and disability advocate
This is a particularly spicy read in the first ten days of Disability Pride Month, Dave! Interesting thoughts.
I see the oversaturation of the ADHD-related videos (particularly on TikTok) and for me, they fall into two categories: 1) 'this topic is trending so let's jump on the bandwagon' from inexperienced, unqualified creators, and 2) genuine discourse from ADHD and AuDHD folks.
I think the latter cannot be discounted because the former exists. Seeking appropriate testing and diagnosis is so incredibly expensive, and just not possible for many in the current cost of living crisis. Senator Jordon Steele-John has been doing some great work in advocating for improved access to ADHD diagnosis, treatments and supports.
Because attaining a diagnosis is inherently (financially) inaccessible to most, self-diagnosis becomes a lifeline, a way of articulating your access needs and hopefully finding some sense of stability.
But even more importantly, I think the rise in this content is actually an indication of a thirst and to some extent, a desperation for sense of belonging and community. ADHD and AuDHD folks are more likely to have been excluded or to have felt othered in their formative years. It makes sense that people who see videos they relate to and feel seen for the first time would wholeheartedly embrace an identity and community that feels right for them. I've personally had friends who've not realised that they had ADHD at all until their algorithm started recommending creators who've documented their experiences with rejection sensitivity disphoria, for example. They were fortunate enough to be able to go through the system and come out with a formal diagnosis, and treatment has (in their words) 'changed their life'.
From my perspective, though the 1st category of unqualified folks appropriating ADHD for views exists, the vast majority of the content I see comes from people starting to find and understand themselves for the first time, and embracing a supportive community that feels more like home than a neurotypical space ever has before.
I can't judge them for that. My entire life changed for the better once I discovered the social model and the disability pride movement. That doesn't mean I am solely defined by my sense of disability identity, but it does mean that I can more confidently (and safely) sit inside the body I inhabit without the self-loathing and disgust that I knew for 20ish years. If this kind of content has the same affirming impact that has the potential to save lives, then I'm all for it.
Aaron, producer and artist, 20’s
I just read your article. I just wanted to firstly express my respect for you as a writer and that I frequently enjoy your emails.
Just regarding this particular one, it makes me wonder if I should stop telling people I have adhd, as I don’t believe it is publicly noticeable and I have had success in life.
The truth is that I can have great career success and people at work would say I’m “normal”, but only if I don’t clean my house or eat well or look after myself or socialise or read or do anything really when it gets bad. It is only very recently that a few healthcare professionals pointed out to me that this is not just evidence of depression. Most of my energy goes into masking my own personality and temperament and symptoms - always has, without me realising I’m doing it until recently. There are a number of reasons why I’ve lived “masking”, but some of it is because of the stigma. I got so angry when I was told I have adhd, because I considered it to be disrespectful to all that I’ve achieved and my ability to function highly. But, I’ve come to realise it’s just a bit harder for me than for most.
So I do wonder: if you didn’t know I struggle, maybe it would make you angry for me to declare it?
Personally it’s not about merit badges. I do tell people sometimes in the hopes it’ll give them some understanding. I don’t personally believe in these clinical classifications that, as you mentioned change for no apparent reason, but I see them as simplifications that can help in communicating needs, and in researching strategies, along with accessing support.
I get that there are people who want membership to a club, and self diagnose, and jump on hype. But how can you distinguish?
I just wanted to share, as some parts of this article, despite being your completely valid feelings on this topic based on your experience, seem to me to add to negative stigma that makes it harder for people who may have seeming success but everything’s just a bit harder for them. It continues to be hard for me to admit to myself there’s something else going on, and sometimes when I’m feeling ok I feel like a fraud. But remove the coping mechanisms and masking and it becomes apparent.
If I boil it down my quality of life is better knowing how to work with myself, and for the first time I fo not feel as though my experience of life siloed as something that nobody else understands. The world is fucked and meds seem dodgy as hell to me. But right now meds are the only thing getting me up in the morning, while I work on my coping strategies in a neuro-hostile world. Anyway, this article does make me wonder if I make people angry by mentioning it, because I am privileged. And not being able to be open about it makes it harder. The system has a long way to go. And the internet doesn’t help with all this.
Bec, diagnosed later in life
My daughter and myself have been late diagnosed. She was 28 me at 54. Always knew anyway so was good to have it confirmed. I tell some people and they literally roll their eyes. But it’s our validation not anyone else’s. It’s not like l can’t put a big sign my forehead, ‘you need to understand my behaviour because….’ Masking has worked for most of my life and will continue. As for the meds, my brain has finally felt at peace for the first time in my life. I may have become less interesting as well lol. It’s a shame that social media has presented life with adhd as a such a drama rather than just educating others. I’m over hearing about it as well. Appreciate all views and subconscious eye rolls are fine by me.
‘C’, Bec’s daughter, diagnosed at 28 with type 1 Autism and severe mixed type ADHD
He makes some valid points, but also some very dangerous ones also.
Because by the sounds of it he’s very much blaming the rise of adhd and autism bc social media and how we are addicted to our phones.
While I agree self diagnoses can most certainly be quite dangerous. It’s also the only way some can really learn and eventually get diagnosed by a professional. If they choose to do so.
But he’s also under minding the fact that studies change. We gain more knowledge as time goes on. Yes misinformation exists and can be very dangerous. But it’s up to the individual a lot of the time do the research into it. Because if you think you have something then you should research it.
There is more studies being done on adhd and autism more now than ever. Because I can guarantee you 20 years ago if you tried to get me diagnosed with adhd I would’ve either been slapped with Asperger’s as a diagnoses or ADD. Or maybe they wouldn’t have been able to pick up on any of it. They might’ve just shrugged it off as me having an active imagination and just needing a bit of extra help.
Comparing stuff to 30+ years ago isn’t helpful in the slightest because everything has changed. And there is still so much we don’t understand about our brains, let alone the female brain.
Hell, there are myths out there that have been out there for hundreds of years that are constantly disproven.
Like the only cavemen men being hunters and gatherers, that’s been disproven. As it was both male and female.
There is so much still to learn especially when it comes to neurodivergency. So it’s honestly articles like his, that are while his intentions are good, they do more harm than good.
And as well fact that there are almost an extra 3 billion people on this earth since 30 years ago. So that also would contribute to why medication is at an all time high.
And covid was the biggest eye opener in so many different ways, because it made people realise that hey, maybe they are different. Maybe the reason they are so burnt out and so exhausted all the time is because they’ve been pretending to be someone they aren’t and breaking away from that is honestly extremely hard. Because society as a whole demands, so much of you and demands you act a certain way. But we don’t and people are realising for the first time in human history that they don’t have to act the way society says they should. They can do things that make them happy.
Now his own issues with coming out as Bi is completely understandable as bisexuals so often have so much prejudice against them. A lot of the time more so than just people who like the one sex.
I can understand why he might feel that way, but he needs to accept that change is going to happen wether he wants it to happen or not.