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Oliviarb

New member
Is it possible to have someone help me advocate and to attend a meeting with me? Virtually is fine. I keep meaning to look if this is okay to ask but theres so many sub sections and reading can be overwhelming sometimes.
I have an ADHD diagnosis (nov 2023) and im going through the process of getting an autism diagnosis. Ive been telling my employer for over a year that i have adhd and I struggle with XYZ because of it and that im suspected to have autism too. Ive told them many times i need adjustments and that I dont know what I need but that I need to be accomodated. I have a meeting soon and I know I will just shrivel up and people please and that ill get brain fog in it and that I am inherently bad at showing up for myself. Im really hoping that this is a thing on here and that i’m not breaking any rules by asking this.
 
Hi. As far as I'm aware, there's nothing wrong with asking others to help you advocate, given the situation you've described. This community has like-minded people who share similar experiences, so you should find support and validation here.

I can absolutely relate to that feeling of brain fog and getting tongue tied. I'm similar to you in that way, and generally wouldn't be comfortable attending a meeting with someone I don't know in person for that reason.

However I would be happy to help in any way I can. Are there any more details about the meeting you'd be willing to share?
This isn't something I've had to deal with yet as I'm still doing A-levels, but I'd like to understand the context of your situation to potentially help myself in future.

As for adjustments, it's not uncommon to not know exactly what will be appropriate for you. I've seen a YouTube video on this from Pete Wharmby, from an autistic perspective. There are also some general things which might be worth suggesting (e.g. quiet workspace, transparency with requirements/instructions, judgement free environment and so on), which should be easy and cheap to implement.
 
Hey, thanks so much for replying and your offer to help!
Im currently trying to quickly get things in place but I think i’m going to have to postpone my meeting so I can have support. Whilst I am capable of attending the meeting alone, I will not benefit from it properly and its meant to be a meeting about getting reasonsble adjustments so it seems silly to try and suffer through it solo.
Im happy to give you more details but probably through private messaging would be more suitable? Its hard for me to try and censor messages to be try to be filly appropriate for public platforms when im stressing snd trying to put my energy into something else. I mean I dont think im overly inappropriate but just incase something needs a trigger warning or anything. I like to be cautious with that kind of thing.
You said A levels so im guessing you are also UK. I have had various jobs that in hindsight now that I have realised I have ADHD and very likely ASC too, that I have had issues with due to my neurodivergence. Hopefully some of my learning curves can prevent you suffering the same. I mostly have worked in healthcare but have had office iobs too and I grew up working in pubs. Either way, a lot of experiences can be transferable regardless of industry. Happy to discuss the good the bad and the ugly. Its not all been bad and I think its more iust an issue of people being uneducated. Hopefully we can change the system. My plan is to get adjustments and stop the cycle of constant burnout and RSD from work and then I can make changes to the trust I work for and create a pathway and a safe space for neurodivergent people in the trust i work for.
I think ill watch that youtube video you mentioned and have to take some PRN adhd meds and get some reading done to help myself.

So far I have contacted voiceability and im looking into speaking with ACAS and Citizens advice. There is also a freedom to speak up (F2SU) Guardian and I think a team of them but that always makes things seem more intense because its mostly used to dispute things and to callout wrong doings. Whilst management havent been great and haven’t implemented things, I do like them and mostly have a good relationship which I dont eant to compromise. I just want help in advocating my needs.

If I cant get professional support I do fortunately have a friend who would more than likely say yes to attending and helping but she has helped me a lot already and literally sat through my PIP call. She has her own disabilities and shit going on so I just dont want to drain her snd take advantage of her. Sorry punctuation and typing are bad when my brain is busy.

Its nice to know that there are other people to help support and validate things. Validation has been key in healing. Ive been gaslit for a really long time. If you know of any other resources that might be helpful id gladly share your knowledge. Dont strain yourself by looking or anything. A levels are brutal, get through that first. Thanks again for your response and offer to help in whatever way possible. I appreciate it. Also dont worry about not being comfortable attending, I completely understand.
Sorry for spam, adhd brain. If you’re still reading, thanks for listening.
 
Oliviarb said:
Hey, thanks so much for replying and your offer to help!
Im currently trying to quickly get things in place but I think i’m going to have to postpone my meeting so I can have support. Whilst I am capable of attending the meeting alone, I will not benefit from it properly and its meant to be a meeting about getting reasonsble adjustments so it seems silly to try and suffer through it solo.
Im happy to give you more details but probably through private messaging would be more suitable? Its hard for me to try and censor messages to be try to be filly appropriate for public platforms when im stressing snd trying to put my energy into something else. I mean I dont think im overly inappropriate but just incase something needs a trigger warning or anything. I like to be cautious with that kind of thing.
You said A levels so im guessing you are also UK. I have had various jobs that in hindsight now that I have realised I have ADHD and very likely ASC too, that I have had issues with due to my neurodivergence. Hopefully some of my learning curves can prevent you suffering the same. I mostly have worked in healthcare but have had office iobs too and I grew up working in pubs. Either way, a lot of experiences can be transferable regardless of industry. Happy to discuss the good the bad and the ugly. Its not all been bad and I think its more iust an issue of people being uneducated. Hopefully we can change the system. My plan is to get adjustments and stop the cycle of constant burnout and RSD from work and then I can make changes to the trust I work for and create a pathway and a safe space for neurodivergent people in the trust i work for.
I think ill watch that youtube video you mentioned and have to take some PRN adhd meds and get some reading done to help myself.

So far I have contacted voiceability and im looking into speaking with ACAS and Citizens advice. There is also a freedom to speak up (F2SU) Guardian and I think a team of them but that always makes things seem more intense because its mostly used to dispute things and to callout wrong doings. Whilst management havent been great and haven’t implemented things, I do like them and mostly have a good relationship which I dont eant to compromise. I just want help in advocating my needs.

If I cant get professional support I do fortunately have a friend who would more than likely say yes to attending and helping but she has helped me a lot already and literally sat through my PIP call. She has her own disabilities and shit going on so I just dont want to drain her snd take advantage of her. Sorry punctuation and typing are bad when my brain is busy.

Its nice to know that there are other people to help support and validate things. Validation has been key in healing. Ive been gaslit for a really long time. If you know of any other resources that might be helpful id gladly share your knowledge. Dont strain yourself by looking or anything. A levels are brutal, get through that first. Thanks again for your response and offer to help in whatever way possible. I appreciate it. Also dont worry about not being comfortable attending, I completely understand.
Sorry for spam, adhd brain. If you’re still reading, thanks for listening.
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Thanks for your response.
I haven't got any personal experience of asking for reasonable adjustments, but I can see myself in your situation facing similar barriers.

From what I've found out, we could all benefit from our employers understanding the type of adjustments that may benefit neurodivergent employees. Or at the very least, people could be open to that fact that some brains are wired differently, which could be a huge asset in the workplace, provided appropriate accommodations.

We'll see if anyone else has any ideas/suggestions and I'd be happy to continue using private messaging. We're just strangers on the internet here, so I certainly don't want pressure you into sharing your personal life.

There might be professional support suitable for this type of thing - nothing that I'm aware of. Though it does give me hope, to think that we could be part of the advocacy that challenges current attitudes. If enough people communicate a better understanding, we're more likely to see the changes we spend so much of our time and effort working towards
 
Take a look at this:

Talk to Neurodiverse Nurses, they could suggest some adjustments relevant to your role.
X (former Twitter): @NDNursesUK

Also apply for Access to Work, they would do an assessment of your needs and could recommend and will pay for adjustments.
 
Oliviarb said:
Hey, thanks so much for replying and your offer to help!
Im currently trying to quickly get things in place but I think i’m going to have to postpone my meeting so I can have support. Whilst I am capable of attending the meeting alone, I will not benefit from it properly and its meant to be a meeting about getting reasonsble adjustments so it seems silly to try and suffer through it solo.
Im happy to give you more details but probably through private messaging would be more suitable? Its hard for me to try and censor messages to be try to be filly appropriate for public platforms when im stressing snd trying to put my energy into something else. I mean I dont think im overly inappropriate but just incase something needs a trigger warning or anything. I like to be cautious with that kind of thing.
You said A levels so im guessing you are also UK. I have had various jobs that in hindsight now that I have realised I have ADHD and very likely ASC too, that I have had issues with due to my neurodivergence. Hopefully some of my learning curves can prevent you suffering the same. I mostly have worked in healthcare but have had office iobs too and I grew up working in pubs. Either way, a lot of experiences can be transferable regardless of industry. Happy to discuss the good the bad and the ugly. Its not all been bad and I think its more iust an issue of people being uneducated. Hopefully we can change the system. My plan is to get adjustments and stop the cycle of constant burnout and RSD from work and then I can make changes to the trust I work for and create a pathway and a safe space for neurodivergent people in the trust i work for.
I think ill watch that youtube video you mentioned and have to take some PRN adhd meds and get some reading done to help myself.

So far I have contacted voiceability and im looking into speaking with ACAS and Citizens advice. There is also a freedom to speak up (F2SU) Guardian and I think a team of them but that always makes things seem more intense because its mostly used to dispute things and to callout wrong doings. Whilst management havent been great and haven’t implemented things, I do like them and mostly have a good relationship which I dont eant to compromise. I just want help in advocating my needs.

If I cant get professional support I do fortunately have a friend who would more than likely say yes to attending and helping but she has helped me a lot already and literally sat through my PIP call. She has her own disabilities and shit going on so I just dont want to drain her snd take advantage of her. Sorry punctuation and typing are bad when my brain is busy.

Its nice to know that there are other people to help support and validate things. Validation has been key in healing. Ive been gaslit for a really long time. If you know of any other resources that might be helpful id gladly share your knowledge. Dont strain yourself by looking or anything. A levels are brutal, get through that first. Thanks again for your response and offer to help in whatever way possible. I appreciate it. Also dont worry about not being comfortable attending, I completely understand.
Sorry for spam, adhd brain. If you’re still reading, thanks for listening.
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Hey Oliviarb,

I can totally relate to your experience. I had to quit a job because they refused to make any changes, acted abusively, and in general been selfish, but that could be said for every business nowadays. We all have brain fogs and tied tongs in such situations and that's why maybe we are most discriminated against from all disabilities. If you need to talk to someone I will also be glad to help.
 
Des said:
Hey Oliviarb,

I can totally relate to your experience. I had to quit a job because they refused to make any changes, acted abusively, and in general been selfish, but that could be said for every business nowadays. We all have brain fogs and tied tongs in such situations and that's why maybe we are most discriminated against from all disabilities. If you need to talk to someone I will also be glad to help.
Click to expand...
Hey sorry for a delayed reply. Life has been a lot lately. Thanks Des I appreciate that. It’s nice to see support from strangers online. Its one thing I really love about neurodiverse people is that everyone is so kind and so empathetic and so willing to show up for each other.
Yeah I hate that the statistics show how few of us are in work but it honestly doesn’t surprise me with the lack of education and awareness that management have. Trying to keep a job as someone who is neurodivergent, is really fkn hard. Its literally my only goal right now. I have a personal trainer and shes just like an all round wellness coach with her impact on my life and I made her a promise a few months ago, to not make any life decisions until I was fully titrated on my ADHD meds. For context also has ADHD and is suspected to be autistic and she has just completed titrations herself and so understands the rollercoaster of it and of just late diagnosed life and living as someone who is ND. This promise is literally the only thing that is stopping me from handing my notice in. It is such a fight for me internally.
As much as I want to get things sorted and then create a pathway for other ND staff and to educate managers within the trust I work for, I just don't know if I have it in me to do it.
I know I shouldn’t give up on fighting my corner but finding it in myself to keep fighting it feels impossible some days. Thanks for listening to my whinge. I appreciate you.
 
sorry for being MIA. I am chronically burned out at this point.

update: seemed like I had support for trying to get reasonable adjustments at work, through someone working for my trust. However I cant get hold of them anymore.

Feeling fed up and honestly just angry that I am for the second time in my 24 years of living, I going to become part of the stats. 45% lose or leave their jobs because of being misunderstood. Here I am, about to again. I have been fighting myself on handing my notice in for about a year now. I hate this. I dont want to let this happen but honestly its just easier to leave.

ACAS have recommended that I start a grievance for disability discrimination. Ill explore how to do this and try to find the energy.

I hope that things are better for each of you. X
 
I honestly believe that in 2025, we need to be far more challenging, confrontational, uncompromising, resolute, relentless and determined in fighting for our rights as autistic adults, given the hugely successful activism campaigns carried out by the LGBT community over many decades, from whom we can learn many important lessons, which in our times has become ever more vital - everything of any real value in life is always a fight for what is right and always involves robust challenge and confrontation in so many situations for us to get anywhere in life, even if in doing so we are regarded and perceived as “being difficult” but it is of critical importance that we must not ever back down once we know that we are right and have prepared beforehand to ensure that our position is correct - we must redouble our efforts in research and preparations and use our findings and knowledge gained to relentlessly lobby our politicians at every level, to ensure that far stronger laws are passed in parliament to properly protect and support us and our needs, ensuring that those who are diagnosed after us are far better supported at all stages of life, child or adult
 
IrishInManchesterUK said:
I honestly believe that in 2025, we need to be far more challenging, confrontational, uncompromising, resolute, relentless and determined in fighting for our rights as autistic adults, given the hugely successful activism campaigns carried out by the LGBT community over many decades, from whom we can learn many important lessons, which in our times has become ever more vital - everything of any real value in life is always a fight for what is right and always involves robust challenge and confrontation in so many situations for us to get anywhere in life, even if in doing so we are regarded and perceived as “being difficult” but it is of critical importance that we must not ever back down once we know that we are right and have prepared beforehand to ensure that our position is correct - we must redouble our efforts in research and preparations and use our findings and knowledge gained to relentlessly lobby our politicians at every level, to ensure that far stronger laws are passed in parliament to properly protect and support us and our needs, ensuring that those who are diagnosed after us are far better supported at all stages of life, child or adult
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Totally agree.
Is there something in particular that you think we can work towards as a community or as individuals?
I'd find it quite exciting to get involved in some advocacy work especially given what you've said.
We should be able to do something that will make a real positive difference. Let's play to our strengths.
 
Running As Usual said:
Totally agree.
Is there something in particular that you think we can work towards as a community or as individuals?
I'd find it quite exciting to get involved in some advocacy work especially given what you've said.
We should be able to do something that will make a real positive difference. Let's play to our strengths.
Click to expand...
A vital starting point is that all autistic adults must have the basic legal right and entitlement to a post-diagnostic assessment to both properly and accurately assess the level and type of autism and have the appropriate assessment and referral to appropriate adult autism support without needing to go through a GP or the NHS (which already is outdated, overwhelmed and not equipped to deal with mental health issues nor hidden disabilities and needs its own separate body) and this must be a basic legal requirement placed on all health providers - this is especially the case when autism assessments are carried out online as mine was in 2021 and/or outsourced (as mine was) to a third party private provider, a view shared by my GP, who also mentions his lack of training on mental health and hidden disability issues in university and in medical school before even joining the NHS in general practice - having worked in supermarket retailing for 30 years myself, there were many situations where it was a legal requirement (legal compliance issue) for us staff to have regular training every 6 months as part of our contract of employment on various issues such as underage sales, health and safety issues, food hygiene, food safety, etc and yet, what I have found utterly shocking is that the training and the models since my redundancy in 2019 was that so many U.K. state and government employees and employment services have a “cookie cutter” “one size fits all” approach with models that are hopelessly outdated back to the 1960’s 70’s & 80’s - surely those working with autism issues services in the NHS for example, should have a legal requirement on them to have mandatory training every 6 months covering the latest research on autism, as is the case in many countries around the world, a case in point being Australia - the same old lame excuses are constantly trotted out regarding “lack of funding” and post-Covid, this will not wash anymore, as many things do not require additional funding - if the NHS was to clean up its act regarding its mismanagement of public funds and eye-watering wastage involving restrictive and outdated trade Union practices, as well as too many senior managers being paid excessive salaries that actively prevent junior NHS staff from providing a proper standard of care to patients due to lack of resources and too much red tape, maybe that additional funding would not be required - indeed, this is demonstrably achievable in the NHS, given the far superior and higher standard of patient care provided by the Manchester Universities NHS Trust in their university teaching hospital, the Manchester Royal Infirmary (MRI) and the Manchester Royal Eye & Dental Hospital, which I have had the occasion to use in the past for various physical medical conditions, one of which was in an emergency situation and I have remained consistently satisfied with the standard of care received
 
As I've said before, and doubtless ill say again, they first must know their subject. Wasting time on misdiagnosed treatments is counterproductive, ND is larger than ASD/ADHD and I'm now certain there's more like m out there.
 
I've managed to get through my working life without losing a job.Maybe because I taught in small special schools so the environment was not often overwhelming.I didn't realise my stresses were ASD related I always internalised difficulties as 'my fault. Looking back I can see many stresses were caused by other staff being hostile to me and the way I operated. It occurs to me that all the legislation in the world will not help if there are unempathic people, usually in positions of power who don't accept difference.
 
Running As Usual said:
Totally agree.
Is there something in particular that you think we can work towards as a community or as individuals?
I'd find it quite exciting to get involved in some advocacy work especially given what you've said.
We should be able to do something that will make a real positive difference. Let's play to our strengths.
Click to expand...
Since I last wrote this, it’s very clear that attitudes out there have significantly hardened towards autistic people as we have seen in the news and elsewhere, confirming what I had suspected since my own later in life diagnosis in 2021 - the traditionally entrenched positions that most people in the general public have taken on mental health and hidden disabilities in general and autism in particular, doubling down on their point-blank refusal to understand, refusing to be properly educated on the issues involved, clinging on to myths, falsehoods and misconceptions (including about the true causes of autism) to support their false beliefs that are in grave error, wrongly believing that the only way to manage autism is by strict, overbearing and even abusive discipline, not taking the person with autism seriously, disregarding and dismissing anything the person with autism says as being “irrelevant nonsense” and proceeding to implement what they want, in the belief that the autistic person is nothing more than “just” a “misbehaving child that needs strong discipline and correction” telling the person with autism that they “do not understand that they are wrong” on any given issue by default and despite any impressions created otherwise, this is a dangerous basis for bullying behaviours to thrive, especially when dealing with bullies who have NPD - given what I’ve read to date, workplace bullying for example has got much worse since 2021 and targets of such bullying have far fewer places to turn to, especially if they are autistic, even within the LGBT community for example - as all the focus and funding is on children’s autism and as more adults are diagnosed with autism later in life, this is going to create a whole tranche of serious social and other problems in the years ahead in every area of our society and the human consequences for our world in general are going to be far-reaching