Recent Adult Diagnosis of Autism and need advice

Thank you Mr.T for your reply, I really appreciate it, and I appreciate the honesty in your response too and I am glad there are people like yourself and others on here who are helping me feel less alone, so thank you :) Just having someone respond and understand helps a lot. I am going to try to join union actually as I think thats super important and I should have already done this, but I will give this a go for sure and try to join asap. I agree about manager and HR, I feel the same way since disclosure, so I will keep a written record as you suggested. I hope you are ok and again, thank you :)

I'm sorry to say that support for late diagnosed adults is virtually non-existent. I have struggled for a year and my GP did write to the autism team in my NHS area and they replied saying they were only a diagnostic service and here is a list of charities now go away!. Ok I added the last bit of that sentence.

Regarding work if your employer is helpful then they should sit and talk over things. Notice I said should! My manager has dithered for over a year since disclosure. Keep a written record of everything just in case you need it legally. Remember you are covered under the Equality Act 2010.

Are you in a union? Don't expect much from HR. Have you got an occupational health department? Everything helps.

I am sorry if I am painting a bad picture but it is better to be prepared just in case. The above reflects my journey until now. It may seem like a nightmare but there are folks out there and on here so that you do not have to feel alone.

Hi Fiona, 

Thank you so much for your reply and suggestions, that's very useful and helpful and I will give your suggestions a go! I definitely think the clarification review and bullet points over paragraphs would be extremely helpful. I also really appreciate your comment "Know yourself and know your limits - when it is time to take a break, walk away, distract, come back and focus." - I definitely forget this a lot and I will make a note of those lovely words as I think that would help me realise that I can take some time and its ok. 

I have tried access to work but its just the waiting time of 18 weeks, which is a long time but I am hoping that will be good once they get back to me. It was just as I am worried I will need to quit the job before they can get back in touch due to stress at work, but I do really hope I can hold out for them to help. 

The main difficulty with my work is that nobody really has the time to support me properly, which is really hard. I get neglected a lot and don't hear back and its a real challenge, but I will definitely try your suggestions and will check out the link you sent as well on Neurodiversity awareness week. I agree, I also find it difficult to ask all the questions I need to as I am scared, so I need to be honest with them that I struggle to ask or help. 

Thanks again for your reply and taking the time, it means a lot and I really appreciate it

Al

Hi Al, I've just joined as I received my diagnosis 3 months ago aged 51 and lifelong masking. I haven't read the others' posts, so apologies if it's duplicated.

Have you tried 'Access to Work'? They were really helpful with my mobility issues in recommending adjustments at work. I haven't approached them this time, as my organisation has its own Occupational Health department who will get involved if I need it, but my manager is very good and willing to learn.

There was a lot of information recorded, and available to catch up, from the neurodiversity awareness week earlier this year: https://www.neurodiversityweek.com/2024-event-recordings I hope it's OK to post this link. They covered lots of sessions, some employment-related, and my manager found the 'manager' video helpful.

It will take some time for people to get used to giving clear precise instructions. Because in general many people don't communicate accurately! They also interpret what you say/write so the more specific you can be about the impact to you, the less they will be interpreting your words in their view of the world. A lot of communication I get at work I label 'waffle'. The thing I find helpful is explaining to my manager what goes on in my head when I read all these confusing and conflicting instructions, to show her what the impact of unclear communication is. This made her in turn think of how she processes text, and is more aware of where she is being unclear. We always do a 'clarification review' at the end of a meeting so I have my actions in bullet points. She now realises how exhausting this is for me.

Don't be scared to ask questions - `'`you say xxx, can I just check exactly what you mean by that? I can interpret it as aaa or zzz, and wondered what your understanding is?" It is hard, as I have to first get over my frustration at myself for not understanding in the first place, before I can work out what to do about it. I write a lot of draft emails to work things out, sort of like journalling, and delete them. Then at some point I am clear on what I want to say/ask, and when I'm calm can put the reasonable request for clarification out there. Try and approach them with an idea, "I'm finding this tricky, can we try ....". Relate it to areas of your life where instructions are good... "If only your request was like the instructions for an Ikea bookcase/Lego/recipe..." said with humour and a smile, which other people might understand and relate to. I have read a lot around autism in these 3 months and made notes on things I find on blogs, books etc that other people found helpful and use that as a starting point.

Know yourself and know your limits - when it is time to take a break, walk away, distract, come back and focus.

Ask for bullet point instructions rather than paragraphs of text.

Can they show you the task, or take photos to show you? Or help you find some more clear instructions online for the same thing by searching? Do they have an example of what they want you to achieve (e.g. last year's report) so you can understand the outline rather than having a 'blank sheet of paper'.

But your work really need to be comfortable with you asking questions. I've experienced difficulties sometimes asking questions, as the person doesn't want to admit they don't know the answer...

Hope some of this helps.

All good brother......welcome to people who know our game of life!

Thank you! I am glad that we have this forum, I completely agree that it is validating and supportive, I am feeling less isolated and alone because of the forum and just having people to talk to who understand has been very helpful and made me happy. Thank you for your words and reply :)

Hi :) Thank you for your kind words and reply, I really appreciate it :) It's a big relief to know I can come here and reach out to others who understand and empathise. I completely agree with all your words and will do my best to search and read as much as possible to understand myself better. I also got diagnosed in February too actually! Took me some time to come to terms with it and reach out, as you are right, it was a shock, but it made sense and I am really glad I know am aware. Thanks again, it made me happy to read your response :) 

Hi Pixiefox, thank you for your reply! I will give this a go actually, I do usually try to verbally say things over email because my bosses don't respond well on email so I resorted to telling them verbally, but I think I could write it and then tell them I have wrote the email here with what I need. I think you are right that having a clear record would be good and can track that back as evidence to HR if they don't do the adjustments as requested. Thanks again for your message, I really appreciate it and I am enjoying the forum, its been very comforting hearing from others who empathise and with helpful information like your reply :) 

Thank you for your reply! :) I have been looking into possible remote work/ self-employment, I am glad that works for you, I do think minimal contact with others would help for myself too. And yes I agree about this place being calming and informative, I really appreciate everyone who responded and the information and links, definitely feel less alone and that people on here understand and empathise. I will watch out for the few asshats haha. Thanks again, and I hope you are well and I wish you all the best too! 

Hi there

Sorry to hear of your struggles but glad to hear that your in a better place now.

Im undiagnosed so far but seeking this. I cannot really offer any advice on work related issues as I’m self employed and work on my own. I feel very fortunate to do so as I have minimal contact with others. 
I have found this place to be very calming and informative with very good people on here, 

As Number said there has been a few asshats in the past but generally they don’t stay long.

I have found the information passed on from here very helpful and have spent all my free time researching and gathering information to better understand myself. 

Wish you all the best in your journey and I’m sure you will find a balance over time

Hi and welcome

It is difficult to get support as an adult unfortunately. I have now known I'm on the spectrum for around 8 years - initially I was shocked, then spent lots of time learning, and things did get better. I'm getting older now so not dealing with work as well due to getting tired so much.

I'm sorry to hear that you are having problems getting appropriate adjustments at work. It's difficult for people not on the spectrum to understand why we need them to tell us about changes well in advance, be on time if we're having a meeting, and to have things explained clearly. How have you communicated your requests? If it was verbally, I would suggest writing it in an email, outlining all the adjustments you need and the reasons for them. Then you have a clear record of what you said and there should be no misunderstanding. If nothing still happens, contact your HR department or Managing Director to ask why your request for reasonable adjustments is not being dealt with. 

I wish you luck, and hope you enjoy the forum and find it useful.

Hi Al, 

Glad to hear your feeling slightly better. I try to remember its not a linear journey, and some days things may be a bit more of a struggle and others I may feel my version of normal. 

Not wanting to overload with info. so these are things that are a couple available aobut exploring your Autism, I found them useful, but may not suit everyone. 

A workbook, to explore your own needs: The Neurodivergent Friendly Workbook of DBT Skills by Sonny Jane Wise | Goodreads

Ellie Middleton's book, also on Sp otif y Ellie Middleton: 'Learning the way my brain works has changed everything for me' - BBC News

c :)

Welcome aboard!

I was recently diagnosed in feb, I think it's different for everyone but the common theme is that it's a kind of shock, even if you were expecting it.

Over the few months since mine I've slowly felt better, I've started to look more at positive things and less at negative.

It's a journey we all have to go on, we need to recalibrate ourselves. Looking back at all the things we've done over our lives in a different perspective, looking forward, wondering who the real "us" are in amongst the masks we create to hide in general society.

CBT was ok, I did some prior to my diagnosis. It helped me see how hard I am on myself and how much I can focus on things I can't control. I also had some post diagnosis education sessions, I don't think all providers do that, which seems odd, just being diagnosed and left without any info is a scary prospect.  most of the resources used are out there online though, just take some time to search out and read stuff, it helps.

It may feel scary but it can only be positive having more information about yourself so you can look after your needs in a way that helps you and understand what you need to do differently, what to avoid and what to embrace in life and know the reasons behind your reactions to things.

You'll get there, you'll find a new normal and some balance. We're all here to reach out to when it gets tough too. 

A said:

I am hopeful that things will improve over time as I come to terms with the diagnosis and learn more about myself and Autism,

I think this is a very reasonable hope, that seems to be borne out by my perception of what seems to be reported in this place, over time.  As a "grown up," I'm afraid that there is very little support and help for us in the wider world, but I have found this forum to be a very calming, validating and supportive place (generally.)  We do have asshats that visit from time to time, but they generally disappear reasonably quickly too.

It is good that you feel slightly better this week, although I remember from my own experience that I vacillated quite wildly in my first few months of coming to terms with my autistic reality.

Hi C,

Thank you so much for replying to my post and with this information and links, I really really appreciate it :) I will have a look through today! 

It's nice to know I am not alone in the feeling. I am feeling slightly better this week, but its still a struggle but I am hopeful that things will improve over time as I come to terms with the diagnosis and learn more about myself and Autism, so I am more equip to get through this. 

I hope you are well and again, thank you for your help and it made me happy to see a reply :) 

Al

Hi there, 

I'm sad to hear you have been struggling. I don't know if it helps for me to say, your not alone in that feeling?

I had a recent ASC diagnosis within in the last couple of weeks, and did not expect the feelings that came after. 

Depending on what feels right for you there are some Helplines and listening services - Mind here, I found the Samaritans supportive the times when I haven't known who to call and needed to talk. 

The centre that did my assessment, suggested one service to contact, which I have, but it is a bit baffling, that feeling you talk about, like looking out into the unknown and more potentially long waiting lists for things like CBT.

Yesterday, when I found these forums  on the NAS website and created a profile, I found it a big relief, I hope you can find some of that feeling here, and some useful tips for things. 

I hate contacting the GP, but yesterday I did actually email the secretary, to thank them for arranging the referral, and to ask if they knew of any other services I could contact, in the area, to support with the things I felt were important right now, for me. 

With your work, could you contact the HR, if there is one, or ask someone you feel more comfortable with, if they have an employee assistance programme (EAP). 

Also, this is a service I accessed through a previous employer, I self-referred in around January, and it felt fairly swift (not a guarantee of course). Mental health support for people at work | Able Futures Mental Health Support Service (able-futures.co.uk) As my work contract ended the support is less frequent while I find other work, but the people I spoke to have been lovely.

There are also a few people who opened the door to their experiences in books and podcasts, which may not be what you need right now (and I'm sure others have shared these in different posts).

Also this NHS page here as a very basic landing page https://www.nhs.uk/conditions/autism/newly-diagnosed/

Let us know how your doing next week, or when its convenient. 

C :)