Not ADHD - just Too many ACE's

[jlpartnerrs]

I'm not sure how to feel about this

I had an online ADHD assessment and found it really shocking to go through - as in reeling off my early childhood and adult life felt re-traumatising, and to be honest I didn't realised/think about the whole of it. To be honest I just try and live in the here and now, because I could get stuck ruminating for ever - getting wound up and upset - I have done n the past and then rung up relatives to say things that I have regretted later. That makes me sound like a complete nightmare, which I have been in the past - but right now I try and keep my life small and uneventful - It's much less stress that way.

I come from a very neurodivergent family - My birth family siblings all have ND children, including myself. In fact my ADHD/Dyspraxic child was the guide to the "could I possibly be?" questioning myself

Anyway the fact remains that my mother is dead, my father refuses to take part in the assessment and because of the chaotic life I led as a child my parents did not keep any of my school reports from the 7 schools I attended. The assesor says that the chaos of my childhood is the reason for the ADHD "like" behavior and that there's nothing more that they can offer. I have been discharged from the service. The letter wasn't very nice to read. There's everything that I disclosed in the letter and it's been sent to my GP.

Meanwhile I am still left with the issues and reasons why I tried to access the service in the first place. The (Menopause related) distractibility, difficulty in staying on task and focused at work, remembering what's to be done (even lists don't help at times) and the extreme depression/demotivation/lack of get up and go is really making me feel that yeah - I am a useless lazy person, they've said there's no reason for it and I am defective. Occasional suicidal thoughts are getting more intrusive because there is no help or cure - this is it for the rest of my life. I really don't know where to go with this. I know that there's bugger all out there for me, now.

My friends (who are mostly ND themselves) were surprised at the outcome of the assessment, too.

If it wasn't for the fact that I have a son at university who still needs the support I give him (He's DX, and gets a range of interventions) I would just go off grid, and live my like without other humans in it, but I can't. I'm just stuck.

Oh no. That's really shit. So invalidating. I'm really sorry this happened to you.

It's not unusual for neurodiverse women to be miss-diagnosed. A common one is to be diagnosed with borderline personality disorder.

In both my case and my husband's we used each other to "back up" the consistent nature of our ADHD. My husband's parents couldn't remember much so he didn't use them. My parents would have denied any issues.

I went privately, not sure if that is an option for you if you went via right to choose/NHS or a second opinion?

It does help to have some to back you up though. When I did mine I explained that my parents didn't even know I was Autistic and it would have opened a whole can of worms asking then to help with an ADHD assessment, as like your family my family are also neurodivergent but they'd never want to admit it.

Not everyone agrees with self-diagnosis. But many ND people do. Put it like this neurotypical people don't normally look at ADHD and autism and think that yeah sounds just like me. If you think you have ADHD it's very likely you do. You should remember that when your brain tries to beat you up and make you think your useless. Your not, you have hurdles when everyone else is running a sprint so of course it's going to be harder.

If you had a chaotic/traumatic upbringing then possibly you are struggling with something like c-PTSD, would that be something you could explore maybe in therapy?

But the fact that there is so much ND in your family makes me question the strength of their conviction that it's not ADHD, as well! I could understand if they basically said sorry, we don't have enough info to go on so can't offer a diagnosis, but they've said no it's definitely not ADHD? That seems so final.

I also think it's shocking that they've just basically gone "Well it's not this so good luck!" rather than being able to look into the cause of your current difficulties and help you find a way forward/coping strategies.

Maybe that's just me being naive about the scope of mental health services, though.

Could you ask a sibling to fill in a form?

The diagnosis criteria is very outdated and is mostly designed to diagnose young disruptive boys. Not women middle aged and over who might not have school reports or living parents.

I had an assessment with MyPace for £360 and they did seem to get it. My mum filled in the form, but as she is disabled it didn’t have lots on the form, and they were fine with that. so even if a sibling could fill in some very basic information for you that might be okay.

I felt £360 was a small price to pay to pay for a diagnosis and a piece of paper that would protect me in my job. My job is manageable, but I have walked away from jobs in the past due to my ADHD.

For what it's worth, I had my autism assessment a couple of years ago and I couldn't involve my parents - my dad is very much from the "it's just a label" camp, and autism runs so strongly on my mother's side of the family that (understandably) it's become the family tradition to completely hide it from the outside world, so she would've been completely uncooperative to the point where her answers would deliberately obfuscate the truth. I just gathered as much evidence as I could from school reports and anecdotes from school friends (based on prompts from the very understanding assessor), and there was no problem at all - so it can be done without them.

Ironically, since the diagnosis, my mother has completely done a 180 and is totally on board and she's even happy to talk about it now, for the first time in the entire history of our family. I think it's the realisation that the world is very, very different in terms of acceptance relative to the 70s/80s when I grew up (and earlier), and there's a palpable sense of relief that hiding ourselves isn't necessary as a survival strategy any more.

Have you looked into ASD rather than ADHD?