Struggling

[Niki55]

Two years ago I was asked if I was autistic. I initially dismissed the idea because I'm female, have a first class Psychology degree and although I had questioned this before knew nothing about masking.

I still have more than six months of a 24 month plus waiting list and am still terrified of labelling myself on the spectrum because I cannot deal with making a mistake, no matter how small.

I have never fitted in. My whole life has been trying to adjust to everything I have been asked to do and it's exhausting. Stop being so literal, try to have fun and joke around. Needless to say I have failed at both.

Everything I do is literal and making jokes is not something I am successful with because I can't read people.

I live by rules and copied behaviours. Honestly, I don't think I have ever known who I am.

Right now, I'm struggling and really have no idea what a diagnosis might offer or what support is available so I can stop feeling so low.

I finally reached out this morning for help and this was one of the places that was flagged to me.

I did contact my GP 18 months ago and have been referred for assessment. I know they have contacted my mum and the assesment she completed put me on a longer than 24 months waiting list.

Right now, I'm struggling. At the beginning I did an online test and a further 9 for good measure. All suggest I have many autistic traits.

My worry is that now I am nearly 50 that things like the menopause or depression will be used to explain away how I feel and I'm terrified that I'll be put on antidepressants.

I over analyse everything but miss the obvious. I try to interact with people but am told I've been rude or that I have been too literal.

Now I am doubting everything but don't know where to turn for answers. I don't want to say I'm on the spectrum, no matter how obvious it appears that I'm on there, because I have to be correct.

At 48 I have emotional meltdowns if things are not correct. I panic if my socks aren't sitting straight on my feet and will rip them off because of discomfort.

I have long hair but rarely wear it down because I cannot stand feeling a stray hair touch my face.

I was advanced as a child and clearly remember the disappointment about being held back when I could have finished school a year or two ahead of children my age.

I also come from an abusive childhood and have prioritised being independent above education. I completed my degree in 2018 and did not find it overly challenging.

I know I have intelligence and I know that I constantly copy others to try and fit in. I just can't seem to make friends and find it easier to shut myself away.

Anyway, this is me right now. Very confused, very upset and not knowing what to do or say until I get a diagnosis.

[catmummy3]

I feel I can relate to this I’m a 27 year old woman I’ve always struggled I’ve always been different I have melt downs a lot feel I’m behind just different to everyone else I struggle leaving the house having work’s relationships friendships I come across as room like I have no filter but I’m over sensitive in many ways I went to the doctors they said I have anxiety and depression they put me on antidepressants and referee me to therapy a few seasons in I was asked if I have autism tbh I wasn’t shocked but I said no as never been tested for it but she contacted my gp and I got a assessment rather fast and turns out I am autistic it wasn’t much of a shock to me and my family as I’ve always shown signs and struggled a lot more than anyone else around me since having this diagnosis there’s been no help they tell you and leave you to it I guess you can Google if there’s any groups or anything in your area but I guess that can be overwhelming I feel like take one day at a time see how your assessment goes the sounds of it I’d say your autistic but it’s not a bad thing many people especially women tend to get a very late diagnosis as we tend to mask behaviours

[Niki55 in reply to catmummy3]

After a lecture on autism during my degree I was going to speak to the lecturer and ask if they thought I could be autistic but stopped myself.

Since my partner first asked me outright two years ago I have resisted looking at anything that would explain my actions, reactions and way I view the world because I was fearful that people might suggest I was learning to behave this way to excuse my behaviour.

Without facts I panic. I need proof, I need evidence before I can make a statement about something.

On Saturday I returned from a trip to Cyprus. I had spent two weeks staying with my partners 78 year old mum to be there for her on the one year anniversary of losing her husband.

I have been before and managed to avoid most interactions by working my backside off cleaning and generally doing odd jobs that she can no longer cope with.

This time I broke. I had a complete meltdown on the third day and then spent the following day unable to leave the bedroom. All I could think of doing was to end my life because that was the only rational solution I saw available for removing myself from the situation and to stop ruining my partners time with his mum.

I kept trying to work out why I was doing this but couldn't give it an explanation. I had been told when I got there to treat it like my own home but was terrified that I was doing something wrong and upsetting my future mother in law.

I just wanted to run but I had nowhere to run to.

Since returning home, I was at work this Monday and after a minor mark down on a quality assessment for a call ( I work in customer services and our interactions with customers are carefully monitored. I had kindly assured a customer not to call back in if the call dropped when I put him on hold, because it had happened in two calls to my colleagues already that morning, and I promised I would call him back. Apparently telling a customer not to call back was unprofessional).

This was the last straw and I had another meltdown. My manager called me (I'm working from home) and I told her what had happened in Cyprus. An hour later I had a call from HR and went into another spiral. Apparently the last day I had worked before going to Cyprus I had been in the office and have been accused of swearing throughout the day.

I can't remember if I did. I remember trying to be funny and I know that any small error leads me to mutter under my breath as I then try and fix it. (No one seems to check the details like I do and I notice so many errors that I have been given direct access to our error log because my manager and senior don't have the time to note them on top of their own work).

There is a reason that I avoid talking to people and why I do not have friends. I am always told that I've been rude or inappropriate.

You'd think that working in customer services that I would be great interacting with people and with our customers, I am. There are rules, I have been trained to provide empathy, to listen and I am great at offering solutions and thinking outside the box.

In an unplanned conversation I'm rubbish. I fail to get the joke, I fail to see emotions and I fail to interact appropriately.

So I am now under investigation for a conduct issue. The second in two years. The last time was when I was suddenly asked to stop doing my back office work and I was trying to explain that it was nowhere near finished to my manager and had another meltdown.

The last 24 hours I have gone against my strict rules and have looked at travelling with autism and staying in someone else's home. Meltdown explained.

I have also started to read up on ASD and the experiences posted by people diagnosed. It explains all of my actions, reactions and behaviour.

I don't want to look for an excuse but need to be assessed because I need to know for certain. I need proof of what I suspect.

I have an appointment today with a doctor to discuss how I am feeling and NOT coping. My partner is coming with me and he is amazingly supportive but feels that I should be on some sort of antidepressant.

I don't want to take medication. They tried putting me on antidepressants twenty years ago and I just stopped taking them.

I'm not sure what help the doctor can offer but I know that I need some help. More than anything I need to be assessed. I need to have facts.

I am also finally reading the three books on autism that my partner bought me nearly two years ago. Like I said, I need to have facts before I can accept that I'm on the spectrum.

[catmummy3 in reply to Niki55]

Many times I’ve watched things with autistic people in and I relate to them so much! So when I got my assessment and they said yes you’re autistic me and my family kind of said well we knew it anyway but that step was hard because I felt ashamed or embarrassed to admit something was wrong with me or people wouldn’t understand and think something was wrong and judge me but I can’t help who I am! I also have many meltdowns I do my best to avoid family even friends coming round it makes me feel so uncomfortable I had brother etc round at Xmas and had a panic attack crying I had to leave the room and spent the rest of the day in bed most days I stay in bed I keep myself shut away that’s why I’m going therapy again because with autism anxiety depression you go in this cycle where you feel stuck lost miserable everyday is the same in bed feeling anxious it’s just not fun and when people come round to see you the making conversation and having jokes just feels so forced and false I tend to make dark humour jokes and say rude things I see peoples faces as if oh can’t believe she’s said that but to me I have no filter but seeing peoples reactions towards me trying to fit in make conversation makes me overwhelmed I live at home with my family so I do rely on their support and they can handle my meltdowns but it really takes it out of me feeling so different all the time

[Bee-bop]

Hi Niki55,

It sounds like the idea of getting the right diagnosis is very important to you and having gone through assessments with two children, seen another person not get a diagnosis and have a friend in her 50's get a combined adhd with autistic traits, I have been able to see how different the results can be but, what seems to stick for me is special interests. My middle daughter was asked about them and when I filled out the assessment form thought, this isn't the same as for my youngest daughter who has ASD diagnosis. My youngest gets excited about things that mean something to her, collects things etc my middle daughter collects things but, there wasn't a feeling of it being ax big a thing if that makes sense? Both struggle socially, both have meltdowns, both have issues with certain fabrics/materials, both get sensory overload, , both have high anxiety but, one struggles with needing things tidy to deal with things and the other doesn't? This difference led to a Dyspraxia, Dyslexia and Dyscalculia diagnosis for my middle daughter. She literally lives in a chaotic mass of things. The assessor said: if your mum was stood at the door, would you see all the things on the floor?" She said no, it sounds bizarre but, she doesn't really see all the stuff. When I went to pick, her up after university I was horrified by not only how much stuff but, that it wasn't boxed and ready to go! It took a van and two trips plus a big clean to get the flat sorted-there was stuff everywhere. She said she just got so overwhelmed by having to work it out.

How I see it, Dyspraxia (which I thought was a physical coordination issue and think two of my children have due to that) is a processing issue that has many similar trains to autism but, special interests were the only thing that was vastly different. A therapist and a health care professional said to my middle daughter she seemed to have autistic traits which led to her seeking a diagnosis.

Not sure if this helps but, just thought I would give my experience.

[Niki55 in reply to Bee-bop]

I am the Queen of clean. Everything has it's place and my whole house is rigidly structured and organised .

I adjust the items on the bathroom shelf after my partner had used them to make sure they are straight again. I have worked out the most efficient way of doing everything I do from getting up to driving to a particular destination.

I plan everything. I think, rethink and overthink.

Watching someone do something inefficiently is so frustrating. Viewing saggy socks on someone's feet causes anxiety.

I cut the labels off of clothes and normally wear tight fitting clothes because I need things to touch my skin consistently. A baggy item touching part of my arm will make me itch.

As far as interests go I know loads about plants and their Latin names. And I have learned to interact with cats. As I child I wanted to know how cats communicate because I refused to believe that animals were dumb.

My partner said I shouldn't really tell people because it's weird that I can do this but I can. I have learned all of the small eye movements, the tiny moments of the head that signifies an interest or a request and beyond body language there is the way cats call.

I have always said that I know only what I need to know but am still told that I possess a huge amount of knowledge.

However, knowing and being able to disseminate knowledge are very different to understanding things.

What I need now is the facts so I can start to make sense of who I am and to understand me.

[Bee-bop in reply to Niki55]

Hi Niki55,

With needing things to be just right, it could be an overlap with OCD too perhaps?

Hopefully you will get the facts soon and can start your journey of understanding.

Good luck.

[Niki55 in reply to Bee-bop]

Thank you

[anymusic]

Thank you for posting and sharing your thoughts!

Hope your waiting soon will come to an end, and that the answear will give you inner peace!

You need to get the facts!

You need to know!

I have a feeling that the waiting time is tearing you apart, and that the result will make you calm.