Published on 12, July, 2020
Hi all, I am new to this and with everything Covid 19 related I am feeling fairly lost in the system. I was referred by my GP back in October 2019 and still haven’t heard anything back. My doctors have said the referral is in the system but these things can take time and obviously with all that is going on at the moment I am unlikely to get any answers anytime soon.
I had a complete breakdown at the start of last year I had come to my breaking point and exploded at work. I was lucky to have a service provided by my company where I was able to access some counselling and that started me on the path to getting an assessment.
Lockdown for me hasn’t so far been a concern, I had just moved jobs at the end of February. I knew the workplace and environment I was in was adding to the way I was feeling and I needed to get out. I had an outburst on one of my last shifts which left me obsessing over it when I got home to the point I had a sever headache for 2 days and then on my last shift I ended up throwing up all over the hallway and I knew then I should take a week off before starting a new job as I wasn’t coping with the change at all. Starting the new job was tough and in my 2 week review I was honest and told my manager how I was feeling and where I had been as this is a job I can see myself in and happily doing (as long as I don’t take on anything else outside of work I seem to manage) after the 3rd week lockdown came and I was then working from home - even better! That took all the stress of travelling and facing the day but still getting to do the job. Then I got furloughed and I am enjoying staying at home doing puzzles, being in the garden and having no stress.
My concern is when the lockdown gets lifted and I have to start to face all those challenges again. My manager seems to be very understanding and easy going but I have made it clear I haven’t been diagnosed and have just said where I seem to struggle/work well with. I have thought this could be a possibility for many years and have always known I didn’t quite fit in no matter how hard I tried. Childhood and Teenage years are always tough and I think it’s been very easy to find all kinds of reasons to blame some of my behaviour over the years but more so since i have entered the workplace it’s been a lot harder for me to cope with. I think I will always have struggles at work and everything that comes with it but it’s when I have tried to have other relationships weather it be a boyfriend or friends then that’s when things really start to get on top of me.
I am not in crisis and know I am not an urgent case and wondered how long other adults have waited to get an assessment/diagnosis and did it help? I don’t believe it will change anything for me but may help me and others understand why I struggle with certain foods, why I won’t wear certain clothes, how I can’t cope with loud noises, why I struggle with temperature change (on holiday if a tiny cloud comes over the sun I have instant goosebumps all over), why I mumble or repeat myself a lot without meaning too, why I micromanage my day (I’ll plan not just the week away but each day to each hour) I know where I’ve got to be and when and why. I’m hoping with work it will let me take the pressure off myself when it comes to presentations and meeting new partners, how do you tell your manager when you meet someone new you have the sweat trickling down you feeling the heat rise to the top of your head and your heart pumping out of your chest. Now he has an idea I struggle so far he’s not made me meet anyone alone he’s always been there to make that easier. I think he’s seen enough in the 3 weeks to see what I have said for himself and my conversation with him confirmed that thought anyway. I know I am very good at what I do as long as I know what I need to do and I’m able to get on with it.
I know the panic for most at the moment is the here and now and the troubles they are having during this crisis but I wondered if anyone had any thoughts/ideas for me for when it comes to after the lockdown and the best way to move forward?
Thankyou! Yes I have been in touch with the centre my GP referred me to and they have told me they have an 18 month wait time for adult ASD but have now got everything I needed to know in the meantime. I am fully aware that an assessment or diagnosis will not really change anything so in that respect I am not in a major rush to be seen but I do want that confirmation of what i am certain of now.
I seem to do okay work wise it was when I tried to have a relationship on top of everything else that everything started to fall apart. Now I look back the only reason we managed 4 years together is because it was basically a part time relationship. I had technically moved in with him after a year but hadn’t really moved out of my family home I was there at least 3/4 days a week and found it easy to blame work and travel to why I would come the day after planned or stay away longer. I went on my first “couples holiday” with him and he had surprised me with it... I’d given myself shingles at the age of 23 from this. I’d thought I’d got some really bad bites I noticed them halfway through the holiday and come home to find out i was that stressed without even fully realising why and half joked with my doctor that I’d just been on holiday I shouldn’t be that stressed!
Football was and is my obsession and I guess it goes against the stereotypical trait by being in a team setting but being female, it’s a completely different set up to men’s football teams- we are all not your typical girls just for playing. But it was the hours spent on my own doing keepy ups in the garden every day, it was my escape! And for me it wasn’t really about the team result which as bad as it sounds but it didn’t matter if we won or lost as long as I played well that’s all that mattered and there were many games my mum would know not to say a word when I got back to the car for the mood i was in. I was lucky my team I grew up playing with was amazing we won sportsmanship award every year and always got to finals and top of the league. And I got to keep football separate to everything I didn’t hang around with any of the girls at school and it was very much the closest version of me in that sense.
My technique is decent and I’m quick but it’s definitely my brain that made me the player I was, I can read the game and see movements before they happen and it was hard to explain that. I managed to join a premier league club at the age of 17 and worked through their academy programme into senior and it’s been my life. Until I got injured and needed multiple knee surgeries and this is something I’m still dealing with! And that’s definitely where I started to majorly fall apart.
It didn’t really matter what work I was doing on the side as football was my main thing but then having to spend more time at work and trying to recover and keep someone else happy when you feel like everything around you is crumbling. I enjoyed the work I was doing it was very systematical and I was running 4 inboxes on my own at one point and preferred that to when we had full staff! But the set up in that company is awful and the retention of staff is terrible. The contract had come to an end and I was moved over to a much slower version of what I was doing I had gone from being so busy all day I didn’t need to talk to anyone to now being too quick for the workload and not coping with the boredom. One guy went sick during one day and I was coming in late from a bad physio session and I got a text from my boss saying I would be on a different contract when I got in.. I’d not been on it before not even got access to the emails ect but because I am good and have done lots of the departments I probably could have worked on it but in the state I was in I came in and had a meltdown and decided then I needed to come back out of that setting and go back to the out of hours team- much quieter in the office but now covering all inboxes for shorter shifts.
I am very much a perfectionist and far too competitive with myself but I see that as one of my best qualities it’s helped me achieve so much over the years and I love how I seem to absorb information, I’ve been called a sponge all my life, academically I am your typical geek! But as I’ve got older and into the working world I really struggle with other people who don’t put the effort in or don’t care about the quality of work they produce - I really can’t fathom it to the point it was definitely a contribution to me needing to leave my last job!
I have now found the role that suits me perfectly, not too much travel small office team of 3 in my department and from the time I did have there I knew I will be happy. I can tell in the first day if I can see myself doing it for sometime! My manager seems great and after telling him where I am at with things and where I seem to struggle he was great about it.
My only concern I have is sometimes I struggle to deal with what I would say are injustices made by others and I need to be able to not react to it. I need to learn how to deal with people not doing what they should be that’s where I seem to find it interferes with work. At the moment I’m managing to keep quiet but the other guy in my team (admittedly he’s in a role below me and paid less) is the same age as me and just has no umphhh if that makes sense. He will happily sit and work on “social media” for hours and I just couldn’t do it. It should only take an hour or two tops a week to set up the weekly posts ect and then either at the start of the day or end of the day to reply to posts ect. It shouldn’t bother me what he does as long as I’m doing what I should be and if he’s happy to waste his time doing that instead of the other projects he should be doing then that’s not down to me to change but it irritates the hell out of me. Or we were given a file to work through and I end up doing 3/4 of it because I’m too quick and he’s just painfully slow.
I like how proactive I am and I have a need to get things right. But need to learn to not let things what may seem minor not get to me like they do. I find what is frustrating for me is that I seem to have outbursts through something someone else has done. I can always say why I am as irate or angry or what made me get to that and I would say I’m right to be annoyed but it’s learning to not let me get to that state because some people are twats. It’s not fair really they shouldn’t have done what they did and I wouldn’t react like that but it’s not good for me to get that bad over it.
I find I can deal with certain social situations better as long as I have my head around it then I can have just as much fun as anyone but I do meticulously plan any trip or outing without even realising I’m doing it I just need to know. But I know what you mean with the lights, I was at Disney and trying to enjoy the fireworks and ended up really frustrated with a little girl infront of me jumping up and down with flashing lights on her head! I had to keep my hand up to block them from my sight as it was really hard to watch the fireworks with that in your face and I know that’s not her fault but I could help getting frustrated and agitated by them.
Sorry didn’t realise how much I had written! Very easy to get carried away on a rant!
Hello and welcome! I am a newbie here too, so just getting to grips with the forums.
I understand your concerns and frustrations. After much deliberation about my traits, I went to my GP last year and was referred for an assessment. A letter from the local health authority shortly after told me that it sounds as though I needed anxiety management! After my protest that I had already had anxiety management and CTB over several years, they accepted the referral and told me I was in for a lengthy wait. This was last September and I am still waiting, so don't panic! I am taking this time to discover myself a bit more, which is really interesting because I am able to understand a bit better how I tick! I am also quite naturally getting rid of the masks that I have built up over the years, and my work colleagues and family are starting to see the real me.
Like you, I struggle with loud noises which actually hurt my head, and the noises from lots of people or children just plain freaks me right out. And if I have to be somewhere, I too need to know when, where, who is going to be there, and what time I am leaving, otherwise I kind of have a mini meltdown in my head, and my wife has to calm and reassure me. Bright light also affects me, and certain LED shop lights make me feel a bit odd.
Regarding work, I would suggest being as honest as you can with your line manager, and also make those you work closest with aware that you have some issues too. This is what I have done in my workplace. Although it is still a bit of a battle for me to educate my managers with the fact that I am not like everyone else, I think I am getting there and certain agreements are in place for me to disappear from the office when things get too much for me if I need to etc. In a very selfish way, I too am loving the lock-down, because the social interaction that the workplace demands is not there! However, also like you, I am not looking forward to having to put my mask back on and be the sociable person that society demands.
You mentioned about your struggles with meeting new people, and how would you tell your manager. Well, I had to deal with this scenario literally in the last week. We have a new head of service joining my company, and they wanted to meet all of their new team via a 1:1 meeting on webcam. Of course this news sent me in to a complete nose dive and not only triggered my anxiety and IBS, but consumed every waking moment. In the end, a wrote an extensive email to my line manager explaining how much distress that this was causing me, and I also explained a little about how I tick. This did the trick, and the meeting for me was canceled. What I am trying to say is, don't suffer in silence. Speak to your manager, because they will not know your troubles unless you tell them about them, and if they are good managers, they will pull out the stops to help you be comfortable in your job. My managers know that I am good at my job and am reliable, and they have even told me that I am exceptional at it. However, they also know that if they want this to continue, they have to provide the right environment for me to flourish.
So, hang in there and don't worry about the delay in your assessment. The way I see it is, it has taken me nearly 49 years to actually come to the realization that yes, I am different to most, and that should not be something to be ashamed of, but something to be celebrated because it makes me the person that I am. Keep an open dialogue with those closest to you at home, and also with those that matter in the workplace, and I am sure that you will find that life will, little by little, become more bearable.
Take care.
I’m glad you are feeling much better :) if I can help in any way or if you just wanted a chat, feel free to drop me a message - my account settings let anyone message me :)
Thanks! I did just that and it has made that uncertainty go away and I am much happier knowing where I stand! It’s a lengthy process and I’m aware even without all that’s going on it will take time but now I have a rough time line I can definitely get my head around it :)
Hi, thanks it’s more the uncertainty of if and when I would be seen. Now I have been told that where I have been referred to has an 18month waiting list for Adult ASD but I do feel much better knowing a rough timeline than to have not heard anything at all. I’m not in a rush as it stands I am lucky I have a very good employer and I am finding lockdown life easier than prelockdown! At least now when things go back to “normal” I have an idea how long I have to wait and if I feel the need to access local services again in the meantime then I can, they left the door ajar for me as currently with the situation I’m in the services they can provide wouldn’t really do much for me but if that changes once life changes again I can go back to them knowing I still have another year before I will be seen.
Thankyou this was very helpful! I called the helpline team who helped me get the information I needed to find out where I am in the system.
My GP had told me they sent another referral and gave me the information of where my referral had gone but they hadn’t got anything back yet for either. I was then able to contact them directly and after sending an initial email with all my information and what I was looking for I had waited a week to call them for a response. They were also great but had said they couldn’t find my initial referral in the system all they had on file was the email I had sent them but they have sent a full referral form to my GP which they have said they received yesterday and both places have highlighted the initial date of referral as October so I haven’t wasted the last 6months.
I have been informed they have a 18month waiting list for Adult ASD referrals but now that I have an idea that I have up to another year to wait I have something to work with and if need be I will access local services again and let them know where I stand.
Hello and welcome to the forum. There is no need to worry about long delays in getting an assessment. Even without COVID-19, it could take months to get an appointment. For me, it took five months after a visit to my GP before I was referred.
Hello NA S66894
Further on from Anthony's reply
You may like to look at our information about autism spectrum disorders: http://www.autism.org.uk/about/what-is.aspx
If you were interested in finding out if you are on the autism spectrum, you would need to have a formal diagnostic assessment. You may find it useful to have a look at the following link for further information about diagnosis and the benefits of getting one:
http://www.autism.org.uk/about/diagnosis.aspx
Furthermore, it is important the professional you see has experience of autism spectrum disorders. You can find details of diagnostic services on our Autism Services Directory in the Assessment and diagnosis section: http://www.autism.org.uk/directory.aspx
You may like to have a look at the following page which includes personal accounts, which may help: http://www.autism.org.uk/about/adult-life/stories.aspx
It might also be useful to pass on information about autism to health professionals when seeking a diagnosis. The following page includes information for a range of health professionals: https://www.autism.org.uk/about/diagnosis/professionals-involved.aspx
If you have further questions, you may like to contact our Autism Helpline team. They can provide you with information and advice about getting a diagnosis. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm).Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor
I hope you find some of this useful.
Best Wishes
Lorraine Mod
Being in limbo is never nice, it sounds like me that you really need certainty. I don’t know what to recommend really other than once the lockdown is over maybe try to make contact and see what the status of your referral is. In the meantime, try not to let it eat away at you, because that’s what it did to me initially but I think I’m more calm these days even though uncertainty remains.
Thanks, that’s good to know. It’s been hard not having any update and when I have gone to other services like healthy minds they have advised chasing up the assessment and accessing services provided through that as they don’t feel that at the moment with everything that is going on and no face to face sessions that they are the best option for me and have also written to my GP saying this.
it’s hard not to feel in limbo at the moment it’s work that is my concern, I’m not a sociable person anyway and this lockdown has eased a lot of the pressure I was feeling with going to work, I don’t want to come out of lockdown and within a few weeks of returning to work feel like I’m starting to drown with it all again. I suppose it’s trying to find ways to make that easier for me and without an official diagnosis it’s harder to ask for help at work and I put a lot of pressure on myself to not let it get to me which makes me over think at the same time.
its a viscous cycle but I’m hoping I will be able to manage and do what I can until I am able to get that confirmation.
Don’t worry about delays in the system - even without coronavirus there can be very long waiting lists for assessments - Surrey/ Hampshire borders is often up to 12 months and I hear London can be longer. I know that on one level isn’t great news but what I’m getting at is there is no need to worry at this stage. Me personally, I was first referred for assessment in 2014... I’m still waiting but there were some really specific circumstances with my case which created this delay. But it is common for people to wait a year. If I can help in any way or if you just want to chat free to send me a message :)