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Trying to get thoughts clear about what to do next

(6 Posts)
hollybyholly Tue 12-Feb-19 14:54:50

I've name changed to post this.
To cut a long story short, I picked up the Simon Baron Cohen book Essential Difference a year or so ago because I was worried one of my dcs had ASD & wanted to find out more. It was a big shock as i just thought "this is me". I did the tests and got scores that would fit with me having ASD. I've also done other tests online with similar results.
But I've also read about inattentive ADHD and that sounds like me too. I'm wondering if I have both - I have so many symptoms of both - all the disorganised, forgetful, daydreamy, chaotic, underachieving stuff of ADHD, but I also can't empathise very well, I can't read people unless they are really clear about what they mean, I am clumsy, tactless, I get obsessive about interests, I do repetitive calming things, eat the same stuff every day, I can't bear certain sensory things, I had to train myself to do eye contact, I mask constantly to the point where I'm not even sure what I'm really like, i just seem to spend most of my life being whoever I think other people expect me to be. There are loads of other things that fit from the symptoms for both ADHD and ASD.
I'm 50 and I just feel so drained and fed up with trying to fit into the world, but since I had these suspicions I haven't told anyone because I feel I'd be opening a huge can of worms. I feel guilty because I think if I got diagnosed it would explain so much but would feel I'd wasted the last 20 years and, worse, that I could have been so much better for my dcs if we'd all understood that my weirdness isn't me being grumpy or disorganised or strange or embarrassing but is just a condition.
I've been treated for several bouts of depression over the years and came close to complete breakdowns when I was in my teens, at university and postnatally. I now feel angry that this might have been the strain of coping with trying to fit in and be normal. I don't mean someone should have noticed, maybe I should have noticed that depression was just the symptom of something else. It all feels so confusing and both positive and negative to think I might have an actual diagnosable condition.
My mum died a few years ago, but I remember her saying that she'd read about Aspergers and thought my dad & uncle (both dead) had had it, and looking back I think she was suggesting that I did too, but I didnt' pick up on it and now it's too late to ask her about my childhood.
I think I could spend 10 years procrastinating, and just thinking about what this means. I don't even know if it's possible to get diagnosed for either of these things at my age, or what the implications would be for things like my job or family.
I'm not sure what my question is. I suppose I am just offloading and wondering if anyone else has been in this situation and what did you do? How would I go about getting a diagnosis? Maybe other people's experiences might help me sort through my thoughts.

KeysToTheCastle Tue 12-Feb-19 22:15:05

Hi there

I just got diagnosed 3(ish) months ago at the age of 44. It was due to a similar experience to you... I was reading random stuff on the internet and an article on Asperger's described me perfectly.

I'm slowly working through the implications of going so long and being undiagnosed -

KeysToTheCastle Tue 12-Feb-19 22:35:02

Sorry... hit post too soon!

Finding out that I'm possibly not as thick and lazy as I felt has been a revelation. I'm also starting to understand just how hard I've worked to try to fit in which makes me really sad.

I'm glad I got diagnosed. Better now than never.

But... I am close to a private clinic that specializes in Aspergers and ADHD (the two are very similar) and have been paying for counselling/coaching. I'm also not in the UK but others on here can advise about how to get diagnosed via the NHS.

I haven't told my family (not close) but my husband knowing has been really helpful. My children are quite young and I haven't worked out how to tell them yet but have been advised that the sooner they know (age appropriate details) the better.

I was VERY nervous about telling my employer but they are very supportive. They don't really understand but want to so the dialogue remains open as I learn more about it. My coach/psychologist is also preparing a description/explanation for them that is specific to me.

Knowing why I am the way I am feels good. My life has been such a battle with me always feeling stupid, lacking in willpower/self discipline, never fitting in, being bullied, etc. It will take some time to unpick it but at least now I know what the hell to unpick! Rather than just chucking more pills at the anxiety/depression.

That was a bit of a ramble... if you have any questions feel free to ask 🙂

springhappy Thu 14-Feb-19 13:57:10

@hollybyholly
I have also spent most of my life masking to fit in with others. I find that the more social events I attend the more withdrawn and detached I become.
I have 3 dc, two with asd, so i became aware of shared difficulties some time ago.
A few months ago I felt like I was heading towards some sort of breakdown, this was amplified as we had moved house. I became aware that my broken routines and new surroundings were causing me severe difficulties, even though I loved the house and area.
I decided to go to see my gp who referred me fo a mental health assessment.
The psychiatrist I saw said she was pretty sure I too had asd and referred me for a formal diagnosis.
I've been made aware it will be about 14 months to wait, but I feel like my life has changed so much already. To be honest in some ways I feel that I have uncovered so many over difficulties I have. In truth I think I'm just allowing myself to be me and not trying to please everybody else.
I've become aware of my sensory difficulties with sense of smell and touch. I always knew I struggled touching cardboard or paper, it makes me feel physically sick, I just never would've associated to sensory difficulties before.
I feel similar regarding events in the past. I have struggled often silently all my life. Sometimes it's been very obvious that I wasn't coping but other around me just felt it was my personality to be eccentric in certain situations. Anxiety is huge, paranoia is my biggest issue though.
I think the years and years of masking and trying takes its toll on you until you feel that you don't know yourself anymore.
I constantly question my own mind now which I think is the result of awkward communication, masking and frequent misunderstandings.
I do think that a diagnosis is the way forward if you feel that it would be helpful.
I'm not entirely sure how much difference it would make, I sometimes feel lost in life and feel that it would be useful in the event of mental health decline.
I'm sorry about your Mum. Whilst it may of been helpful I won't be taking mine to the diagnosis as she not particularly supportive and I feel that she would just hinder the diagnosis. We seem to see things very differently. I remember all of these feelings throughout childhood too, feeling detached is the biggest sense I had. I also sometimes wondered if I'd been born wrong gender or if maybe I was an alien lol. I felt like some type of mistake if that makes sense. I don't feel that way anymore and now understand my feelings a little bit better. smile
I have only told dh and my dm, my dh is my rock, he is amazing and supportive and always has been. My dm is not as supportive but shes the same regarding my dc with asd so I wasn't surprised.
I think self acceptance is the key - and then allowing yourself to live life in a way you can be truly happy.

hollybyholly Fri 15-Feb-19 20:21:34

Thank you both for replying. Sorry not to reply sooner, I just wanted to find a bit of time to myself to read the replies properly. It's such a relief to hear that other people have felt the same way as me - everything you both say sounds so familiar.

Keystothecastle that is exactly how I feel about the stress of spending my life trying to fit in and feeling unhappy about taking antidepressants when I can see now the depression has always been caused by the huge & constant effort of trying to be normal which every so often has blown up in my face, usually at particularly stressful times like just after having a baby. It's so good to hear that getting a diagnosis might still be worthwhile at my age. I wondered if I went to my GP they might just laugh or think it's something I should have dealt with years ago. I think it would make a difference to me to be able to say officially that I have been diagnosed.

Springhappy thanks so much for all that detail, it all sounds so much like me, even the bit about wondering if you were the wrong gender - I thought that too, always looking for something that would explain why I felt so wrong.

The sensory issues are really interesting. I only recently read that this is associated with ASD, but I have a lot of sensory issues - I feel panicky and anxious if there are perfume or washing powder smells near me, I can't bear to touch that nylon waterproof fabric that cagouls are made from, and have loads of issues with different sounds and lighting.

The more I find out the more things fall into place, which is a relief, but it makes me sad though that I've gone through life feeling so awkward and wasting time trying so hard to fit in and work out what was wrong with me.

My dh is away on a work trip for a few days but hope I can get my thoughts straight and talk to him when he gets back. I hope he'll be supportive and give me the courage to make a GP appointment. I am ridiculously scared about talking to real life people about this.

springhappy Fri 15-Feb-19 22:32:08

Aww I felt exactly the same about talking to my DH. I though he would think less of me, almost like I'd been deceiving him over who I really was.
It may sound silly but i wrote everything down for him to read. I struggle talking directly about feelings and emotions but for some reason I can write them down perfectly. My ds is the same.
Dh has been fantastic, I thought he might talk me out of it as I often get so obsessed with ideas and sometime I fixate on things that aren't really real if that makes sense. But no he was good and supportive.
I had been to see GP years ago with the same suspicion but the GP I saw wasn't very good. This time I went prepared with notes on my phone. The referral was made the same day and I was seen within a few weeks.
It is such an intense awakening feeling when you become aware of your difficulties and actually find a reason for them. In some ways it feels Fantastic and reassuring but in others I agree with how you describe the feeling of sadness with how you've struggled through life.
The constant feeling of being so alone even if your around people you know well.
When you look back over life you realise how the difficulties caused you to do certain things so you didn't get 'caught out' for struggling. It's baffling really as to why we are almost programmed to hide our inner feelings.

Oh and the sense of smell seems to become stronger every day that you're aware you have hyper senses. I have a fear of heat/fire and I can smell radiators or car heaters and they cause me extreme panic that I struggle to control.
Walking through the supermarket I'm also overwhelmed by perfume, bakery, cleaning products. It's like my thoughts get all messed up because the smells make me feel things from my past confused very strange. Like the smell of wooden jigsaws take me to reception class and provoke the feeling of being overwhelmed and nervous. I'm sure you'll feel similar.

I hope you're kind to yourself and take lots of time to reflect. I am starting to feel a sense of inner peace that I have never had before. I think it is self acceptance.
I think you should do anything you can that will promote your happiness thanks

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