Struggling to cope with my late diagnosis, my life and my teens who are also on the pathway

[Alm0nd1]

I have 3 teens. All on the autism pathway. 1 under Cahms, another under Adult services and a third just about holding it together but looks as if he too will need some MH support. After a hideous 2 years with my daughter in and out of hospital and 1 son v poorly and suffering with some hideous life events my diagnosis is being fast tracked to help me support them. There is no doubt I’m autistic and will get a diagnosis but it’s only recently I’ve come to realise it. I’m in my 50s. I just thought life could be difficult at times. My husband is struggling and I’m now feeling so despondent about everything. Getting the diagnosis is the right thing to do and will I hope help long term but I feel so stupid, bitter and ashamed. It’s as if I’ve been living a lie. Why is my whole life blighted by it but my sibling has gone untouched? Just feel now as if all professionals I have to deal with are looking down on me and when I get deservedly frustrated with them they just think “well she’s autistic”. Not sure I have the strength to support all of us anymore and feel very alone. They are funding counselling for me but I’m scared I’ll just overwhelm a therapist as there is so much for me to process. I have also lost a parent and I’m struggling with some kind trauma I think over some things that have happened to my dc and also struggling with handling a caring role, work etc. Not sleeping and waking up feeling scared and alone. Feel as if I’m clinging on by a thread.

Has anybody else with a v late diagnosis felt like this?

First, sorry to hear things are feeling so overwhelming

I had a late dx of ADHD and have autistic traits, so potentially will look into an assessment at some stage. It is difficult to process when you are having to do so much to support others.

I work as a psychological therapist supporting other neurodivergent young people and adults and honestly if you get the right fit, with a therapist who is either neurodivergent themselves or at least has extensive experience and training, they should not be overwhelmed by what you’re bringing. You would also want to check if they work in a neurodiversity affirming way, so they won’t see your differences as deficits or encourage masking to “fit in” - they work to help you accept your authentic neurodivergent self as you are and process the impact of so many years struggling and living without knowing why. And genuinely affirming professionals would not look down on their neurodivergent patients. They’d want to work with you to find ways to help and support that work for you and your family. And if you’re not getting that, it’s not good enough and you and your family have a right to good, ND friendly care.

I’ve looked on the UKCP site and none in our area have autism expertise. There is so much to discuss I’m not sure where to start. It all goes round in my head. Struggling as a carer and seeing my kids suffer, my ASC, dealing with services, my anxiety….the list is endless.😩

oh OP

I am currently going through diagnosis for a different life altering diagnosis (kEDS) which terrifies me as I saw my mum and grandmas last 15+ years of life. And am aware that the seemingly 'random' health issues my DCs have are likely related.

I feel grief for me/guilt for DCs and blind panic/terror for DH tbh.

So sorry I can't help but here's a handhold and solidarity

Also I feel as if I’ve been living a lie all these years. In some ways it’s a relief knowing difficulties weren’t my fault but knowing I absolutely am different and have a disability I guess is making me feel apart from everybody else, a bit embarrassed, lonely and scared.Will that go? I do want the diagnosis as it’s clear as day anyway, I need it to help my dc and maybe want a bit of closure to the am I/ aren’t I alongside justification for things being hard.

Matchingcollarandcuffs

Sorry to hear you’re going through similar. My husband is struggling hugely too. I wonder if there is some grief for the life we thought we had.

@Alm0nd1 where are you based? DM me if you would find it useful to have recommendations if you’re looking privately.

Can you flip it so rather than the diagnosis making you feel different accept that the reason you feel (and have felt) different is due to the diagnosis? I'm not explaining it well, but have these feelings only come on since you have pursued diagnosis or have you always felt different/outside it's just that now you have a label to confirm it?

Did feel a bit different but just thought I was qwerky/ eccentric.

yep. (also fifties)
horrible isn't it?

Do you think professionals will be more dismissive of my opinion now?

it is what I fear. not sure if it is true though