Is a formal diagnosis useful?

[AnnonymousMum]

DH is diagnosed autistic, DD is awaiting assessment but I'm 99% sure she will get diagnosed autistic too.

I am certain that I'm not neurotypical. I think I'm AuDHD, my mum now sees a lot of autistic signs from childhood. I still have meltdowns as a nearly 40yo, but I'm much more sociable than DH. I'm very forgetful, I can't find my way around the town I grew up in and need a satnav to get to work or I miss my exit. I lose everything. I get overwhelmed all the time. I cry very easily. I find supermarkets so overwhelming I have sat down on the floor at times. When I'm upset I hit my head or bite my hand to try to make the feeling more tangible. My brain feels full to the brim and overflowing, I have hundred of tabs open and jump from one thing to the next. I scream when this get too much. I feel like my brain is a pinball machine and I can't follow the ball and I hate all the lights and sounds going off.

Despite all of this I have 2 degrees, I have a professional career, people tend to think I've got it together. I have some amazing friends (almost all are ND!) and a lovely family (although DH and I are up and down). I genuinely think my work colleagues would have no idea, and I work in a ND informed industry. I have no idea how I'd explain it if I got diagnosed and wanted to share it. They're super supportive by default so I don't know if I'd need any adaptations tbh. It's my home life I can't cope with!

I don't know whether to seek a diagnosis just for clarification and self understanding.

How have people felt after diagnosis? Has it been helpful? I don't think I want meds because I have health anxiety and stimulants scare me. I just wonder if I'd feel better once I confirmed what was actually going on?

For myself if gives me the validation to be kinder to myself. I'm not being lazy when doing something like a big supermarket shop wipes me out. Or needing alone time after taking my children to a party.

For my husband he found it the answer to many questions and to stop wondering and ruminating over it.

So both of us have found it useful.

No, unless there are some adjustments you want at work. I don't think it necessarily brings enlightenment and it definitely doesn't bring support. Huge waiting lists mean assessments on the NHS are sometimes fairly questionable as well as they are rushed encounters with private contractors which just leaves creeping doubt. If you can afford a private assessment and you want to know, or you have a reason that a formal diagnosis would be helpful, then go for it. But it won't necessarily give you any answers or certainty.

Hi. I was diagnosed privately late in life. You have to have an NHS diagnosis to get treatment, irrespective of the private one. My GP rang me when he got the report and said he was willing to refer me. I hadn’t been expecting the call and I was very grateful to him. But I decided not to go ahead for many reasons, which I don’t want to discuss here. Nevertheless I have found the diagnosis personally very helpful. I have since realised- and this sounds so stupid- that when I was having the original assessment, there were some behaviours that I was asked about, which I denied at the time but which I do in fact do have / do.

I did have some sessions with an ADHD coach that were helpful- if you do that then make sure the coach really does have genuine specialist knowledge. Lots of people think they might have ADHD but being able to say that I’ve been diagnosed by a psychiatrist is very empowering, or at least I have found that. I’m continually surprised at how much it has affected my life and the behaviours that it explains. In my family as well as in me. I do not see it as a superpower or any other crap like that.

There is now a fantastically long wait both for a private and for an NHS diagnosis. Best wishes

This. I've been able to forgive myself for what I thought was my broken brain.

On top of that...there's an absolute lack of data on how autistic folk develop with old age - I have no idea what the future holds, but if my diagnosis stops me being over-medicated for some misdiagnosis in 30 or 40 years when I'm less able to advocate for myself, so much the better.

I definitely have traits of autism having self diagnosed many years ago. Ten years ago or more. I have never bothered to seek a formal diagnosis as there is no cure. So I really do not see the point as we all have to self manage as adults.

Brought me peace of mind - to finally know why I am the way I am - so much understanding that I am not ‘wired’ I am autistic

Makes sense of my life and my life experiences

I receive support through SS - have daily carer to help me to access life / do things I want to do.

Understanding / accommodations when I have medical appointments

PIP / ESA / UC as can’t work

It’s not a ‘label’ - it’s a reason for how I experience the world and helps me gets the accommodations I need to live life as best I can.

I didn't get meds but found the diagnosis useful as it explains why I'm messy etc, like it's not coz I'm rubbish!