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.
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.
Access to Work may be able to help even though you are not yet diagnosed.
Your employer recognises that you do have problems covered by the equality act by having given you certain adjustments, and whether or not autism is a factor in your problems, which it certainly.appears to be, you would be covered by the equality act due to the length of time your difficulties have existed.
You do not need a diagnosis to obtain help from Access to Work, in theory at least, though it obviously helps. Ask your GP if she or he will give you supporting documentation and also write down your difficulties in as detailed form as you can and contact Access to Work. You can get help in ways such as a support worker for all.manner of conditions such as stress as well as autism, although autism will lead to longer term help. This help should include a support worker and training for management and colleagues although you will have to agree to your colleagues knowing for this to happen. Access to work will do a workplace assessment and also talk to your managers/employer.
Just google Access.to work, you can ring them for advice or complete an online form and the process is quite swift. The help I have had has kept me my job, of that I am certain.
Thank you for the suggestion. I had not heard of Access to Work so I will definitely go check them out.
Hi Otenba and welcome. You aren't alone for sure. Don't worry about getting your thoughts out here; that's what the forum is for.
I've also worked for the same employer for most of my career - about 25 years now. Like you I've moved around within the organisation and 5 to 7 years is my pattern too, which I find intriguing!
I had my evaluation interview a few weeks ago and I'm waiting to hear my diagnosis.
Good workplaces will do what they can to help with or without a diagnosis & mine certainly has. I also wear noise cancelling earbuds plus use white noise or music when office chatter gets very loud. I actually don't mind being left out of social stuff I just need to screen out inane chatter :-).
After looking at the .gov site's information about the Access To Work process, I am not sure I qualify under the eligibility criteria due to the point about "have a disability or health condition (physical or mental) that makes it hard for you to do parts of your job or get to and from work". Thing is, I can do my job and I drive myself to work - it is not a great work environment I am in because of the people around me, but I can do my job and do it well (my managers are happy with my work). I struggle to be okay at work and Access To Work program doesn't seem to cover the sort of problem I have.
I did ask about being allowed to be stationed in a room on my own away from my team but work decided that they were not happy to do this because they did not want me to be blatantly cut off from my team on purpose - they wanted me to try and keep within the team when I am at work so my isolation did not get worse. They also refused working from home because of a similar reason, on top of the fact that I am mostly needed to be on site. There is also the issue that no single rooms are available anyway too since every office is open plan now, so the option of walls around my desk within an open office environment is seemingly the best I could get under reasonable adjustments (not just around the desk but I am in a corner so walls behind me too with an open "roof").
Considering the stage I am at now with my employer, I am concerned that asking the Access to Work people to challenge my employer on their stance would not be something they would do. I am not sure how well a support worker would help in my case either considering I have been mostly independent throughout my working life. I guess I am having a lot of trouble trying to understand what I should be asking for from the Access to Work people, while also keeping my employer's decisions in mind.
I will keep looking around for more examples of how they could help me just in case I have not picked up on something obvious. I am very lost so if I have I am not surprised.
I wish my work colleagues would leave me out of social stuff though considering how they behave towards me in the office. They seem to be too insecure and worried about causing waves within the office culture to just not invite me to things.
I think inviting people they won't talk to day to day even a bit, and have no interest in bearing in mind their health needs when they invite, is really really backwards. I've told work that's how I feel too. It's all a saving face exercise so their reputation(s) are left intact.
I think you are reading a bit too much into the criteria. From what you have written before it seems clear to me you do have difficulties.
These difficulties are not that you yourself have difficulty doing things. They are that by doing your job you are getting stressed, You have not been put on some sort of performance/capability review because you have no difficulties with your job, you have been put there because your managers think there are problems no matter how well you think you are doing your job and how much you may like what you do.
You have also stated you are having problems on reception. You have problems with your colleagues accepting you for what you are.
I can work perfectly ok when left to my own devices. When there is no interference. When I can work in my own way. However my workplace doesn't often work in that way since being taken over. Open plan offices, noise, smells, movement distractions, interruptions, being moved from one task to another and then back again - these all cause problems with me, causing stress and affecting my work, however well I can work in ideal conditions.
It was only when I got help from Access to Work that my problems began to be ironed out. The training for staff helps stop the insensitive remarks, and helps colleagues understand, and for managers it helps them understand the problems you can face with work tasks. The fact that you have been absent from work with stress shows there is a problem.
Access to work can and probably will provide training for your managers and work colleagues, and a support worker for you who can also explain things to your management so that unfair performance issues do not become the subject of capability hearings. Your worker will also advise you on techniques to avoid the problems at work caused by your condition. If your difficulties are not too great the worker will see you for probably two hours a month, or if the problems are greater it could be more.
If you contact Access to Work they will speak to you first, but remember their purpose is to keep you in work. The assessor will be very experienced and will understand you may not know what help they can give.
The criteria is nothing like the criteria for a PIP assessment and they do not 'challenge' your employer in any way. They explain that help is available for you and it is in the spirit of co-operation. You will be given the option to be present in their dealings with your employer or you may prefer they speak privately to your employer after seeing you.
They provide funding for things that are not part of 'reasonable adjustments' but if what they recommend is what your employer should be providing anyway under law, your employer will be expected to finance it.
The help is 'means tested' on your employer but this need not concern you in any way whatsoever. You will not have to pay a penny.
If you are confident to speak on the phone to them, there is a phone number on the website. Give them a ring and explain what you have said in your posts. Or if not complete the form on the website, also explaining what you have said here. They will be in touch with you and I am sure you may be pleasantly surprised.
Sorry to hear that things have been difficult and that the wait for an assessment is quite long (mine was also similarly long). Unfortunately, I have heard many people say that as an adult, support is still limited even with the diagnosis.
I am sorry I don't have much experience with working, as I'm only now starting to look for my first job. But it seems that other people have suggested many good ideas, like Access to Work. It seems like you can do your work quite well, but it's the social stuff that's been difficult. I don't know if it might be possible to consider other companies where the work environment and people are different from the current ones you have trouble with? (I don't fully know the situation so I don't know if this is suitable).
It might help if you can find maybe just one or two close friends at work. I think quality of friendship matters more than how many friends one has. If there are any other people at work who has a similar diagnosis to you, or share similar personality traits, or understands you, it would be very helpful to seek them out.
Thanks for the reply.
I hope that you can find a job you are happy in and where any issues are minimal.
Considering my work relationships history, I do worry that I will face similar issues whenever I eventually find a new employer who will give me a chance. Now I'm aware of things like Access to Work, I hope that I will have the option of support with this when I somehow manage to start a new job with a different employer.
Some people I know think the co-worker quality is due to the job sector my employer is in too, but people are drawn to these sorts of employer because it could be a life long stay with them so one of the reasons I was happy to work at this employer. Times have changed though so employer is not as staff oriented now and staff are feeling it. Low morale is quite a problem.
I did have one friend who was a new member of staff that I worked with and they wanted to get out of my office asap. They managed to get out. We are similar in some ways but for different reasons. Their limitations are easier to accommodate than mine. I've been with my current office for enough time to know I will not be able to develop a similar relationship with anyone else left in the office. If I could, I would have already.
Somehow this reminds me of the years it has taken for me to persuade my family not to get me a cake on my birthday (I don't particularly like cake) and not to sing to me (it's pointless and cringy and has nothing positive about it) . These are deeply embedded social traditions that seem to carry more weight than an individual's wishes!
Thank you for breaking it down in this way and the further reassurance. I feel a lot more confident about approaching them as a result so I will contact them very soon, once I'm done preparing what to say.