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So now what?

(19 Posts)
KeysToTheCastle Fri 07-Dec-18 00:50:13

I'm working through the diagnostic process for Aspergers. If I don't have it I will be surprised but it will just confirm that I'm a defective person 🤷‍♀️.

But going on the assumption I DO get a diagnosis, what next?

I'm 44 and it's not like I can go back and relive my life. Well, half a life. I guess. I'm pretty inept as a human.

Feeling quite down about everything right now and don't have anybody to talk to in real life that understands. Understands that I feel like my head is going to explode from trying to carry out a 'normal' life that others seem to do with such little effort, the constant pressure of feeling like I'm a bit thick and not totally in the world like everyone else, the mental assault that is everything from soft play (I have 2 children who help with the lived half of my life--they are ace!) to family dinners to picking the kids up from school, being the 'black sheep' of my family and, well, all the rest...

Does anyone have any thoughts on what happens post diagnosis? Or any helpful resources (websites, books, etc) for a middle aged woman? Experiences, anecdotes?

I think I find out next week...

springhappy Sat 08-Dec-18 20:11:32

I can't offer much advice as I'm currently awaiting a formal diagnosis appointment, but I do understand completely how you feel. Right down to the black sheep situation (Like life isn't already tough enough). Hoping you get all the help and support you need. Even if it's just understanding yourself a little better smile it's such an emotional rollercoaster. x

KeysToTheCastle Sun 09-Dec-18 03:13:07

Thanks Spring. Today was a particularly bad day. I swear finding out what is 'wrong ' with me is making everything worse! It's just another layer to deal with and more stuffed into my head. I'm exhausted with it all.

I don't know what help/support there is for this. It's not something that can be 'fixed'? I can't go on with things like this though. I had a proper blow up today which was scary as hell. It's a tough time of year eh the best of times but I feel like a pressure cooker!

I'm sorry you are feeling like this too. Its really confusing...

JudgeyMuch Sun 09-Dec-18 13:17:20

Hello - fellow middle-aged woman here! smile Am 45 now, got diagnosed at 43. No support post-diagnosis for me (although I went private, so there may be some for you if you are going through the NHS).

I'll come back to this thread later!

springhappy Sun 09-Dec-18 15:14:52

I'm not sure about your younger years Keyes but I personally have always had a very awkward time with my family (especially my parents) I strongly suspect my Mother to be Narcissistic especially as when I told her the phycologist suggested I go for a Formal diagnosis she constantly talked about herself and her childhood and her communication etc... it was like it was her who saw the mental health team...this is always how she's ever spoke. Very self absorbed.

I am now trying to piece together which parts of my 'issues' are caused by my bad childhood and which parts are due to mental health. I honestly can't tell.
I mention this as you also spoke of the black sheep feeling, it's important that you have somebody you can talk to about your feelings so that you can work them out in your mind.
Since seeing the phycologist I have realised how many things I have done on a daily basis to try and appear 'normal'. I am trying to accept myself even if others can't.
I think eventually if you do get diagnosed you may be able to learn to recognise your strengths. I bet you are a fantastic mother and I bet that is why you are realising why you struggle.
I also push to take my children to soft play, parties, swimming etc.. trying to show them confidence and making sure they have everything I didn't. I'm lucky that I can obsess in such a way that helps my girls and that I don't get absorbed in my own life (if you know what I mean).

I have children with asd so I feel that I can relate to them - even with all the struggles I think there is a huge inner beauty, strength and a massive depth to my children that I can share smile it's just hard finding others who can relate x

citiesofbismuth Sun 09-Dec-18 21:31:16

You essentially become your own therapist. There is virtually no help out there unless you're very lucky or you go private.

I can recommend reading Neurotribes by Steve Silberman. Go onto youtube and search for 'autistic women', I'm currently following Purple Ella. There's lots of women vlogging about their experience of being diagnosed as autistic later in life.

Give yourself the time and space to grieve for your past life and all the wrongs, misunderstandings and poor treatment you'll have had from other people. This will take a long time and is an ongoing process.

If you want a discussion forum, try Wrong Planet. It's American based, but the guy who runs it is very good and the people I've come across there have always been friendly.

Expect your symptoms and sensory issues to worsen. This happens as you come to accept your new identity and relax into it. It's normal and happens to lots of people. You'll find a balance after a while.

Expect to feel deeply depressed one day and really elated the next. It's a roller coaster. Suddenly discovering you're something totally different to what you always thought you were is a huge shock to the system even if you feel initially happy and positive about the diagnosis.

Don't forget, you're not alone. There are thousands of people the world over discovering that they're autistic and it's a funny and inspiring community that you're joining. When people describe their difficulties and it all sounds weirdly familiar, then you don't feel so alone 😊

KeysToTheCastle Tue 11-Dec-18 02:32:49

Wow thanks! I'm on my phone so apologize for not responding individually.

I'm not in the UK but have opted for private assessment. I am close to a specialist clinic that deals with ADHD/Aspergers. The psychologist there did my initial screening and they can help after. I have my final appointment with the doctor tomorrow. I'm well and truly fed up with talking about myself. And finding out just how much about how I am is not normal! Jeez.

I don't fit on with my family. My parents thought they could snap me out of my strangeness by humiliating and making fun of me. I'm still the odd one out 🤷‍♀️. I've actually had someone ask me if I am "going to be the family black sheep forever". So there is some work there to find out what is nature and what is nurture (or not!).

Thank you for pointing me toward some books, websites/YouTube, etc. There is so much out there that it's helpful to get recommendations to whittle it all down.

Thanks again!

OComeAllYeFaithful Thu 13-Dec-18 23:14:22

I’ve been diagnosed almost 3 years (diagnosed mid 30s). It took me a long time to process the news and even longer to accept myself as autistic. It’s better now.

Things that are better include: medical attention - I say I’m autistic and that I might not present in a classic way - for example, I don’t always seem in as much pain as some, I tend to withdraw in pain. So I explain that they should take my verbal responses as their best indicator. Work - I have disclosed my diagnosis, I’ve just moved job and I’m going to ask about getting a work based assessment to ensure I get the support I need. Travel - I got a ‘hidden disability’ lanyard last time I flew - I got fast tracked through the airport, on the plane first, extra attention from the crew, it was brilliant. DH described it as the first time we’d really felt a benefit from my diagnosis.

In practice, it’s changed very little. But I feel much better about myself. I let myself rest if I’m tired because I know I’m overwhelmed. I put extra plans in place to avoid meltdowns. Changing how I see myself cannot be underestimated.

KeysToTheCastle Thu 13-Dec-18 23:27:54

Thanks Faithful!

I have now been diagnosed with asd/Aspergers.

I have booked a follow up appointment with the psychotherapist who did my initial screening. He specializes in adhd and Aspergers so I'm hoping he will be very helpful.

Disclosing to work is a big question for me... it must impact me hugely (I'm an architect if it makes any difference) but I don't even know how yet. It's early days! I need to get my head around it all.

It is so weird to be reading about people who feel like me when all this time I thought I was 'normal' but not very bright!

So excited though to have found the 'thing' at the core. Devastated at the same time as it can't be 'cured'.

PostmanBos Thu 13-Dec-18 23:45:57

OP it's funny you say you feel you are not very bright, yet you are an architect, something most people would say means you must be very bright indeed!
Maybe this diagnosis will help you see that the areas you are very good in do count and the things you struggle with don't define you. I once read that people with low self esteem are constantly raising the bar on themselves. It's like they constantly overlook their achievements but focus in on their failures. With autism you may find some simple tasks others can do easily hard but never forget you can design a building, something very few people can do.

KeysToTheCastle Fri 14-Dec-18 00:26:42

I think it's all connected somehow.

Someone on a podcast described the self esteem of people with Aspergers as being 'a leaky bucket'.

I think it's part of how I am... I really don't see my achievements as being that big of a deal. It is just how it is 🤷‍♀️. But I have a problem with reading comprehension , I always feel slightly disjointed and seem to interpret the things I hear differently than people who hear the same words.... I feel a bit thick as a result. Like I'm in a bit of a fog.

It's weird, I don't know how to describe it...

WeMarchOn Fri 14-Dec-18 18:56:20

I was diagnosed then sent on my way, Facebook groups are great support

RangeRider Fri 14-Dec-18 20:47:15

Congrats!

Oddgirlout Sat 15-Dec-18 14:43:15

I came onto mumsnet to ask exactly this question! I was diagnosed seven weeks ago and although I do feel like I’ve accepted it I don’t know what to do about it! What actual changes can I make to improve my life?

I am in the UK and I was diagnosed by the NHS. They gave me a leaflet with the details of a support group. Unsurprisingly, I don’t want to go to a support group!

I feel the same way as you Keys, that I’m always in a fog, despite having an Oxbridge education. I’ve never been able to find a decent job, but then I’ve got four children, so I use that as my excuse!

I wish, I wish there was more help out there!!

WeMarchOn Sat 15-Dec-18 15:27:33

I'm admin of "Aspergers UK" it's a brilliant Facebook group

KeysToTheCastle Sat 15-Dec-18 22:23:29

The thought of 4 kids strikes terror into my very soul! I can't cope with 2! The noise...(shudder)

Im realizing that I'm quite lucky to have support on my doorstep. I have to pay but luckily we can claim back through health insurance.

My doctor previously referred me to the practice psychotherapist for anxiety. When I explained to her that I was working my way through an Aspergers diagnosis she cut me off with, " that's nice but I believe that we all have our little quirks." This is not a fucking quirk, it's the key. So that's what I would be dealing with if I tried to pursue a diagnosis through my GP.

Have you tried Purple Ella as suggested by someone previously? While she is the extreme opposite to me (I'm VERY shy and introverted) the couple of YouTube videos I have watched have been useful. I'm still finding it eerie that there are others like me. I think some of the strategies she uses/suggests may be helpful.

I'm rambling a bit now... but thank you everyone for your comments!

Oddgirlout Sun 16-Dec-18 19:55:22

They’re great, my four. I do get overwhelmed but they are my friends too. We are all nerdy geeks together. They’ve learnt that they’re not allowed to make a lot of noise and mess, but that works more or less successfully!

Do any of you guys work? I sort of do, but it’s complicated and rather sporadic. I’m glad my husband is happy to support me!

whitedoorbell Wed 26-Dec-18 22:47:37

Hi, sorry am late to the party!
I came off all social media in the last year as it just made me feel overwhelmed so not had access to any facebook groups etc. Then remembered I used to be a big MN fan years ago so found you lovely ladies!
My Ds (age 8) has aspergers and ADHD and goes to special school for kids with emotional and behavioural details. I always struggled with life but just in the last week found out about Aspie Girls and their different traits, compared to aspie boys and it was like someone flicked a light switch! I think I am Aspie too! I have booked a gp appointment for the new year to ask for a referral for a diagnosis.

Like you said OP, I wonder what difference it will make? To be fair, the last week, since I realised I could be Aspie, alot of things are making sense. Also I look at ds with fresh eyes too and I feel alot closer to him than my other 2 kids (they are neurotypical).

I too struggle with jobs and work. I can do it for a while then after about a year, it just gets overwhelming. I just thought I was unlucky and too flakey to stick anything. But now looking back I can see that it was a combination of things, either overwhelm with social chit chat which I just cannot get my head around. I can do the chit chat to a point but I feel like I am on constant high alert and watching and analysing my colleagues to try to understand what is going on. Then I try to copy them and it either doesn't work or it just feels so fake and I go into a spiral of feeling more shit especially when i watch my colleagues who seem to be happy as Larry and really enjoying the conversations which I just can't see the point of - is this making any sense at all? Then I feel like a freak because I can't join in or when I do, it doesn't do anything for me so I don't fit it etc etc etc

The other thing I realised is that I have worked for some real bitch bosses. The ones who when you are struggling kick you when you're down rather than supporting you. This also makes me feel shit and weak. I feel so needy, I like to have reassurance and feedback that I am doing a good job. I guess everyone wants this, but I seem to need it. I feel like a needy child - in fact I feel like I must be behaving like my ds does. His self esteem is so low that he can't do anything without huge amounts of encouragement and support. This makes me feel like a needy failure. So when things get tough, I reach out for support and don't get it and then my emotions take over and I get overwhelmed. I just can't do it. And so I quit.
I bit the bullet a year ago and quit my last crap job in a supermarket and claimed carers allowance for my son. This also makes me feel like a failure especially because I have a university level education and am a qualified teacher, but I just can't do it. I now do voluntary work supporting families with kids with special needs which I love and suits me great in lots of ways. I realise special needs is one of my specialist subjects so I have lots of knowledge and my attention to detail and stubborn determination are celebrated in this role. But it has it's drawbacks. I meet a family in crisis and it's all very full on and I feel like I am their new best friend. I feel like we have lots in common and it's all very intense. And then the situation settles and I crash back down to earth. I feel like they drop me like a hot potato which is bad for my self esteem. The rational part of my brain knows this is not what is happening, but that's how it feels. We spend lots of time working together and keep in regular contact and then they disappear and I have to tell myself they are "clients" not friends, but every time it hurts.

Sorry for hijacking your thread OP! It's great to be amongst people who get it!

Oddgirlout Thu 27-Dec-18 21:56:19

Hi, welcome white

Glad you’ve found us. I love this part of mumsnet, wish it was a bit more active!

I think that a diagnosis makes it official in your own mind. There are times when I doubt it, question why I’m finding life hard. Then I can tell myself that The asd is real and a genuine disability (I don’t love it and would take a cure if there was one!).

Hopefully others will have helpful advice for you xxx

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