Despair with pre-existing troubles, while still waiting for ASD assessment

Hello all,

I think I'm starting this thread because I think I need someone to talk to because I have felt very scared and alone for a very long time... and I get the impression that I may not be alone with my situation which makes me very sad as well.

In the last two years, my husband and I came to the conclusion that I may be autistic and so we approached my GP and they were happy to get me on the NHS waiting list. I've completed the initial assessment forms so they're happy to have me on the list as well. Sadly, I was told at the start of the process that I would have to wait 18 months (which would've been November 2018), however, during that time, I was also made high priority and told that they then couldn't give me an estimated wait time. It has been 22 months now and the last correspondence I got from the assessment people was that I was going to be contacted by them when they were ready to assess me. I have heard nothing since then.

I'm having trouble trying to work out the best way to explain my pre-existing troubles. I will do my best.

I have had the good fortune (I guess that's the right phrase) of being employed since I was in my late teens and with the same employer for most of it. I am still currently with them, however I have changed jobs within that employer. I have noticed that the role changes have occurred after about five years which I find interesting considering I keep hearing the max of five years is a thing that autistic people do.

Most roles I've been in have been of an administration nature and in a back office, however the one before my current role was on a reception and despite my best efforts to cope, I ended up getting medically re-deployed because the stress of the role was making my already known disability too difficult to manage and so I would struggle to be safe and well. This lead to a massive knock in my confidence and self-worth, and worth to future employers. I was moved to a back office role again but now I have certain reasonable adjustments in place - including taking no phone calls and not dealing with the public face to face. These things all happened before I became aware of possibly being autistic so I was not factoring it as a possible cause of my issues I was having with dealing with the public and the pattern of strained relationships with work colleagues (despite best efforts to be kind and friendly to all).

Now, when I became aware of the possibility of being autistic, this was after a few years of struggling to fit in with my current office team (a pattern I was very used to seeing in previous roles too - and with family on another side note). There are 15 of us minimum and it became an open office environment during my time with them. My work colleagues subtly ostracise me while also inviting me to their personal events without actually caring if I go or not. They passive-aggressively / indirectly vocalise that they don't like people who don't have the same interests as them - which likely includes me considering how much difficulty I have with food and drink because of my disability and so anxieties. They blame me for my problems and want me to risk harming my health to gain their "friendships". I used to think I was just paranoid for a long while but when I made new friend who joined the office a few years ago confirmed that they actually weren't very nice people really and the friend wanted out of that office asap too, I think this just helped me lose hope that things would get better. I genuinely don't understand why these people can't be bothered with me when I try so hard to be good with them.

So, I'm glad that friend managed to get a job in a different office with the same employer. I have continued to struggle to find work anywhere else. I have been applying but having no joy. I had applied for the role before the friend who got it did, but I think with the medical redeployment making me more acutely aware of my limitations now, my second attempt to apply for it was the final straw for the people who had seen me before. I couldn't convince them that I could cope with the demands of the job so I got turned down again. My despair made me not surprised, so I would not apply ever again. I am glad that my friend got out of my current office though.

Now, after that second failure and knowing that me possibly being autistic was why I was so unhappy at work (I love my job, it is the people that I don't fit in with), I broke down after an incident with two work colleagues and went off with stress. This was long term and I felt very afraid to go back to suffering in the office. Work wanted to help me return, but of course it was more on their terms because the issues I had were things that work, ACAS and even the CAB said work did not have to do anything about because it was not their place to "make people like me". As far as I'm concerned, there is a clique in the office and I'm very much an outsider.. and my manager is the ring leader.

So time went by, offered help was very poor, and so my case went to capability hearing. I was not let go, but I had to agree to certain things (I won't elaborate because I think I've already said a lot) but one of the key things was they were happy to place walls around my desk because of me possibly being autistic, so sound would be less of a problem. It was a long wait for them to organise the walls for some reason, but I eventually started going back to work on phased return in another office before returning to my arranged desk within my current office. It was very scary and difficult but I am in and doing enough to meet what was agreed. I am still job searching.

As you can imagine, with my issues not really addressed, I still experience stress at work. Some work colleagues won't even acknowledge my existence on purpose yet no one notices. I decided to not re-join the tea club because it would mean having to interact more with people who I know don't like me, so I just sort my own and don't be a problem to others. I did originally join the tea club in the earlier days just so they'd remember I existed. I think my relationships with these people has been doomed from the start and how things are now, I feel they are very un-salvageable now.

I have been job searching for a *very long time* now. I specialise in admin, but I keep finding that all admin jobs that are permanent are combined with customer service now so are not suitable for me at all. I feel so worthless to society and, with how the economy is, low on hope. When I look into what benefits would be available to me, I cannot claim without taking a penalty first if I quit my job, and I am not poor enough to claim, and I'm not disabled enough to claim those kinds of benefits... I dunno if this would change if I'm diagnosed with autism, but I guess I'll find out if that happens.

At the start of my time being on long term sick, I managed to get an interview offer here and there, but no job offered. Feedback was rare and either unhelpfully vague, or things like "you are not suitable for this type of role". I also visited a careers advisor because I was desperate on how to fix my situation, and they made it very clear that I should stick with my current job as if I become unemployed with my circumstances, I will be unemployed for an extremely long time. Another dent to what hope I have left. I cannot risk being unemployed like that because of my responsibilities so I do my best to cope at work still... doing things like quietly crying if needed and listening to music with noise cancelling earphones to hopefully not hear my work colleagues talk to each other like best pals.I swear I could be dead at my desk and they would not notice or care.

I've tried finding free counseling, including using the NHS service and Mind's service, but I tend to find they are dead ends when it comes to trying to help me. I do not want to try medication because I think that would only be making me more placid to suit others needs over mine. I know I'm not being unreasonable - like so many others, our needs are not being met and that's not our fault. I am horrified that I know that certain services will be closed to me if I am diagnosed as autistic when my experience with no diagnosis has been extremely poor.

Sorry for the long and selfish message, and thank you so much for reading if you got this far. Getting this all down has helped me feel a bit better even though the overall fear of things has not left. Any helpful ideas or suggestions welcome. I'm happy to reach out to services but most of them in my local area are poor, or not interested until I'm diagnosed. There is nothing within an hour from my home on meetup.com too if that suggestion is put forward - also, a lot of the time, anything like that tends to be in work time anyway which is super unhelpful to me in full time work. I would like to meet more autistic people, just not sure how.

Best wishes to you all.

Edit:

Just to add, I have had a unison rep involved. I think their help is one of the reasons why I still have my job, as well as me telling my employer that I love my job.

Parents
  • Just to update on my progress... I contacted Access to Work, who then referred me to Remploy... and now I'm being referred to another service who has more experience with autism (which I'm guessing that my case worker may have been stumped how to help me and she also did this after I suggested about having someone with me at work so I didn't feel as isolated but it probably wasn't suitable to be my manager). Shall see how I get on after being contacted by the next service. :/

Reply
  • Just to update on my progress... I contacted Access to Work, who then referred me to Remploy... and now I'm being referred to another service who has more experience with autism (which I'm guessing that my case worker may have been stumped how to help me and she also did this after I suggested about having someone with me at work so I didn't feel as isolated but it probably wasn't suitable to be my manager). Shall see how I get on after being contacted by the next service. :/

Children
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