Hi, how to approach getting diagnosed & what help is realistically available?

Hello,

I have been doing a tone of online research recently around autism (I think I may be) and came across this website which seems really helpful :)

So firstly nice to meet you all and I probably will become a frequent lurker of this site. 

Here I am going to try to sum up my situation with details I think are relevant, to try and ask what help is realistically available for me if I did think about taking this to a GP? Possibly to get a diagnosis? But if I am ND, would getting a diagnosis be worth it other than for my own emotional clarity? 

Throughout my whole life, social interactions have overwhelmed me. I had always just put this down to not being socialised very well as a young child due to illness, and I lost my mother at a young age so I guess I assumed it could also have been some kind of trauma response? As I was growing up I'd constantly be playing single player games where my choices of player dialogue were very limited and I could take as long as I liked to think about which response to pick so I had just assumed maybe my ability to respond to situations in real time never really developed.

background history: I highly suspect both my Dad and sister have OCD. My dad especially with creating so many counting systems he'd make aware to us as kids about checking taps/ locking doors and routine things. And not to just start stereo typing but every social interaction I have witnessed with him, I had always been able to tell his is not like most other parents in how he talks and his obsessions with certain topics (especially star trek) makes me think he could be autistic similarly to me(if i am) but has just figured out how to manage it very very well, he also frequently used to say 'when I have to talk to my colleagues I put on my game show host mode' which is currently how I am dealing with getting socially overwhelmed ?? so I'm noticing a lot of parallels that from researching seem to be common with autism. Equally we lost my mum.. it could just be his way of dealing with trauma as he refused to get any sort of mental help.  My sister on the other hand ahs shown me she cannot sleep without doing x y z, in that exact order at exact times, to a clock. She also had a very extreme eating disorder and was taken into a residential unit... thankfully she is somewhat better now.  But my point being, it is very likely I have something ND genetically based.

I've never had issues in understanding what people are saying and their emotions/intentions behind their words but when I speak to people face-to-face and on voice chats my mind goes into some kind of shut down mode with my heart pacing extremely fast and my vision goes blurry. I get tunnel vision during conversations and the occasions my heart isn't trying to leave my body I still struggle to focus on what is being said in broader terms, like I will understand what someone has said but it will be clouded by my own self consciousness and extremely overthinking every single possible meaning of what this person could be saying to me. I often physically start shaking even when it's just sitting down on a bus or in a cafe. This causes me to have absolutely terrible motor skills doing anything when I am around other people, that I am usually perfectly capable of doing when I am alone.  

Often after these interactions I will do my best to avoid any sort of human contact and tend to just shut myself in my own world. Which I admit probably has not helped me get any better but with what I have researched about sensory over load, it seems like that is my best way I am able to deal with it.

For long periods of time in my childhood I would just be essentially mute and only make sounds/simple words if I really needed to respond to anyone. I guess due to my age no one really thought this was odd and maybe just accepted it was a quirky unique part of my personality. I did however however have very detailed long conversations that I was fine with, with a very select few people, like my close family members and best friends. But even with them a lot of my responses were thumbs up and nods.

Then I hit secondary school, we moved from a very small town to the big London. I didn't know anyone and going from a school with 20 kids per year to 200+ was more than a shock and I only made one very close friend but that was it. She started making more friends and she spent less and less time with me until I just did not know how to approach her anymore and then everyone around me made my head shut down. I started to stop attending school and then fully dropped out because I just couldn't cope, which worried my parents and they took me to a GP where I was referred to a whole load of therapies, I was diagnosed with depression and severe social anxiety. 

However from age 14+ I was never in any formal education and spent a lot of time shut in my room. I only left for family meals, visiting my sister when she was in hopsital & family outings but even then I'd do my best do avoid. It got to the point I feared the outside world.

My dad suggested I go on NCS when I was 17 so I did as an attempt to try and make a change in my life and I really enjoyed all of the outdoor activities and it felt like some way to communicate with others without having to speak. I did meet a few people on the trip I kept in contact with, who later on introduced me to one of my first partners. Because of their patience with me eventually I got very comfortable around them and no longer had the same level of being overwhelmed as they introduced me to more and more of their friends. However the fact they had so many friends and constantly were doing things with them,, things didn't work out between us but we are still good friends now, they have since been diagnosed with ADHD which is interesting. 

From the same group of friends I ended up getting very close to my now boyfriend.

We both got involved in renovating a library to a cinema near my house so we would spend a lot of time there together. When it opened we kept volunteering together for a little while until I somehow to this date I don't understand how, managed to get a job with the cafe that was in the same building. Now working in hospitality really forced me to 'Mask' because despite inside I was having constant anxiety attacks from customers and the other staff members, I managed to put on some kind of act until I think I changed a bit as a person? Eventually I ended up really enjoying hospitality and being a barista,  I became able to make eye contact, have meaningful conversations with customers my hands stopped shaking when I spoke and my heart managed to stay somewhat calm unless someone was rude to me. but that's all part of the job and I was so happy to have found a way to not only be earning money & being a member of society, but have some sort of direction in my life? 

But now me and my boyfriend decided to move in together, in much smaller city, a 5+ hour drive away from both our families, we are renting a house together, he is doing an uni/apprenticeship thing and seems to be very happy with how things are going.   

I on the other hand left the only job I've ever had and it's been coming up to 6 months since we moved and I can't find a job. And yeah luckily I was smart and saved up a tone (which i hoped would be the beginning of my life savings).. but now I only have one months worth of rent left. I've been on indeed etc and going around local places giving people my CV. Attempted to get in touch with the nearest job centre.. I've had a few interviews but nothing ever came out of them. And I could almost tell from how they were looking at me after I started speaking that immediately they didn't like me/ they were pitying me and that I wasn't fit for the job. Maybe it was just obvious how anxious I was if I was stuttering too much, but from what I know it's very normal to be anxious for interviews. So then I considered I could just be over thinking this all, so approached some interviews trying my best to stay calm by using my kind of 'game show host' act (as my dad puts it) but nothing changed in how I perceived the interviewers saw me and being rejected from jobs so I am now worried I'm incapable of masking to work because I've been out of practice for so long. 

The only thing I have got going now is a hospitality BTEC I'm doing 3 days a week. It lasts 3 months and isn't paid. I can barely speak in the sessions and shake the entire time while taking notes/ doing assessments. But my tutor thinks I am doing okay so I hope I can at least pass and maybe it will help me more with getting a job after?

My shaking and heart have gone back to how I was before I started working and I keep myself inside our house everyday because I'm too scared to even walk down the street alone. Of course I do go out with my bf and we do grocery shopping together.. but as I said my funds are running out. He could only just afford to pay rent & bills on his income and then have nothing left, so me not having an income isn't an option.  

To add to this I recently have started having hallucinations. But I think I could just be getting so stressed about it, and that's it. 

I really don't know what to do to better this situation. I don't qualify for benefits or anything because I never earnt enough when I was working & my bf earns too much from his apprenticeship. I have an online/irl friend who is convinced I just have autism and should look into getting help but I'm firstly not entirely sure if I do and it's not just anxiety? And that if I do have Autism, what help would getting a Diagnosis really be? I do not think I would qualify for any sort of financial support for the same reasons I don't for benefits. 

So hello new community, there is a wall of text about me,, maybe I just needed to type this all out but any advice would be appreciated.

Thanks :)

  • Hi,Welcome.
    Getting the ball rolling for am assessment takes a bit of time.
    The thing is, due to our NHS crisis you may may be looking up to Two years for a formal Diagnosis.
    Don't  give up, it just takes time.
    Best wishes

    M.M

  • It may be worth getting a diagnosis for your own mental clarity. However a diagnosis won’t get you very far in the sense that there is not approved medication, therapy or other treatment for autism. So the only benefit would be giving you access to disability benefits, bus passes and other privileges. Such as work accommodations, but work accommodations are very hit and miss as a lot of employers simply don’t care if you’re disabled they don’t want to accommodate to your needs unless it benefits them. So it’s up to you there are benefits and negatives but overall I have to say I would recommend you do get diagnosed because in my opinion the benefits do outweigh the negatives.

  • Welcome!

    Alot of what you said sounds like it could be autism. If you want to try to get a formal diagnosis then I say go for it!