For those of us who feel that a formal diagnosis of our neurodivergence would help us, either a misdiagnosis or a missed diagnosis is devastating. Which, of those, is worse? Both!

Misdiagnosis: the assessment by a medical professional that we have a certain condition, when we actually have another. The immediate problem with being misdiagnosed is that we are then put into the DONE pile with that diagnostician. We may be given medication or therapy, depending on our diagnosis, or we may be sent away to live our life as best we can, and told to read some leaflets. We may even identify with some of the ‘symptoms’ in those leaflets, because there is so much crossover between different conditions/states of being.

But if we are misdiagnosed, somewhere down the line, our ‘symptoms’ will return and then what? Worse still, some medications, if prescribed wrongly, can actually worsen our pre-existing ‘symptoms’. Do we then have the energy or the daring to return to the GP/hospital and challenge that decision? All too often the answer is ‘no’. Added to that, our misdiagnosis means we haven’t found our community – and finding our community is worth its weight in medication. It calms us when we talk to others who understand us.

Missed diagnosis, on the other hand, is where the medical professional just does not identify why we are suffering. It may be that we do have other conditions as well, co-occurring conditions, and that the diagnostician stopped there, without considering what lies beneath.

A personal example: I was diagnosed as having postnatal depression after my second and third children. I didn’t have postnatal depression after my first child because he liked to stay up most of the night and sleep half the day, meaning I could continue to do things like designing board games, stamp collecting (cringe, but also – ooh those pages and pages of beautifully arranged stamps) and sticking to routines with the help of my beautiful lists. I found the little book the other day, that I used for my routines, dating back to 1990! At some point I will add a sample somewhere on here. It makes for amusing and completely understandable reading, with hindsight: OF COURSE I am autistic! So obvious now.

Anyway, back to the anecdote: no postnatal depression with my firstborn, horrendous with the next two. Why? My hormones were still my hormones, my environment was the same. The big change was that I had no time for myself. No time for the essential special interests that kept me on the level. My exhaustion levels increased due to no sleep and a sea of tiny creatures feeding cheese into the video player, unravelling my audio tapes, and painting the TV with wall-to-wall Tippex. Not to mention the external pressures to socialise, perform, get my diary in order, learn how to cook real food, be like other mums – all of those increased. And I DID NOT cope. I was socially isolated, unemployed, and I had three children aged 6 and under, all of whom had as many quirks as I did, of unique kinds (many adorable, some less so).

I was a misdiagnosed, undiagnosed autistic ADHDing woman, slammed on anti-depressants for postnatal depression and told to join Mother and Toddlers (heaven forbid), to ‘get out more’. That was the end of that.

One small example of the dangers of misdiagnosis and missed diagnosis. And it’s taken me another 32 years of flailing around, my own initiative and determination, my own money, my own research, my dangerously poor mental health, to find out what’s really going on. This is not acceptable. And I’m just one person of millions of misdiagnosed and missed diagnosis people.

I’d like to end with an upbeat message, as always. My message is – diagnose yourself and trust that you know yourself best. You could save yourself decades of pain. Do your research, read some books by neurodivergent people, and if you still feel you would benefit from a formal diagnosis – go for it.

The fact you’re reading this means you’re already there. 🙂