Autism and Lee

Autism makes travel a challenge. Here’s how I learned to cope https://www.theguardian.com/travel/2024/apr/22/autism-makes-travel-a-challenge-heres-how-i-learned-to-cope?CMP=share_btn_url

Dear Bobby,

The other day I was catching up with a friend of whom I worked alongside as a nurse during the pandemic. They are unfortunately in a situation similar to me and it got me thinking about starting to talk more openly about how my previous employer ‘managed’ me.

I’ll let you in to a secret, they didn’t know the first thing when it came to managing an autistic member of staff. I have also seen first hand how they respond when an autistic person (me) presents at A&E in a crisis with thoughts of suicide, again they didn’t seem to know how to support me then either.

As many of you will know, I was diagnosed as being autistic in 2021 after having a complete breakdown after working for most of 2020 on COVID wards. So the diagnosis and added PTSD came together at a pretty difficult time in my life. Especially as my employer at the time was taking steps to ‘help’ me to return to work.

My employer (Tameside Hospital) identified a job for me whilst I was still off sick, they took a decision about where to employ me without waiting for me to speak to occupational health. I can vividly remember the day that I had a message from a colleague wishing me luck in my new job. I was sat at home wondering what the hell was going on because no one had even considered that they might need to involve me and discuss the plans.

Nope, there was no consultation with me, and certainly no communication. It is not surprising that I would eventually raise a formal grievance with the help of my union that was upheld. The only aspect that was not upheld was the investigation into why a colleague had cornered me against a door and rubbed and held ice packs on my bare arms for fun. This was following my diagnosis and my team were all told about me being autistic. N.B. by the time they did investigate the incident, the Sister stated that she didn’t recall the incident, so case closed.

After my grievance I returned to the chosen job was dumped into a new team without any consideration to any adjustments I would need, I lasted less than a week before I was in tears because the environment was too overwhelming and stressful. For me it was very frustrating because the advice from occupational health was already making multiple recommendations that could be implemented, I don’t think they implemented any of them.

Following this I worked vaccinating, fitting people for FFP3 masks and swabbing staff for COVID. However there continued to have no clear plan as where to employ me, I felt like the round peg in a square hole.

At this point I was being managed by a head of nursing called Janet and a deputy director of nursing called Kevin. I was a band 5 nurse being managed by two very senior staff within the organisation, neither of which seemed to understand autism or be willing to help implement some of the recommendations that followed my OH appointments.

Eventually, I was offered an interim role managing a three month project where I was asked to produce a GAP analysis of the trust in terms of how good/bad they were at supporting autistic staff and patients. I was not given any idea of the long term plan for myself which continued to give me a lot of stress and anxiety. I even had a meltdown at work, my managers took statements from two people who saw my meltdown but did not listen to my version of events.

I was even threatened with disciplinary action for my meltdown. It was even referred to as ‘out of character behaviours’. With a previous grievance upheld and this meltdown I think I had already painted a target on my beck.

I delivered the report on time, a 17 page fully referenced report was provided to the senior team, I was met with a lot of enthusiasm and told that the trust wanted me to continue for at least 14 months, whilst I waited for the plans to come together I even started writing a draft plan with short, medium and long term plans on how to improve.

When the plans had finalised in terms of which team I would sit under and work alongside, Kevin and Janet organised a big face to face meeting with lots of senior staff. Now if you know me you will know that I really struggle with anxiety in meetings and also processing all of the information. So I thought, I’ll take along my digital dictaphone and ask if it was ok to record the meeting so I could listen back at make all my notes.

That was my plan, sadly the meeting was running late, the senior staff were rushing around and I was having to make small talk in the corridor before we went into a big meeting room. I was flustered and very anxious, and in my haste forgot to mention the dictaphone. At the end of the meeting, I realised I had pressed record and tried to switch it off, it started playing the audio and I panicked, I informed my new colleague why I had brought it along with me, I apologised for failing to mention I had it with me.

I was shown around my new team, but only a few hours later I had an email from Kevin informing me that because I had brought it with me (regardless of how overwhelming the meeting was) they had decided to withdraw the offer of extending the secondment. I instantly replied and explained in full detail what had happened but nope I was out.

Kevin chose another job role much like Janet and the matron Sally had done previously. I could see that the same thing that had happened before was now happening again. I was told that the job chosen was the only job available and was fully suitable in line with all occupational health recommendations.

Needless to say, I was heartbroken, I had worked so hard on the project and offered the opportunity to continue and hopefully improve things within the trust. Sadly I think Kevin and Janet used the dictaphone incident as a reason to get rid of me.

In early 2023 around Jan / Feb I had my 12th and 13th occupational health referrals. This time by Janet, and essentially for the job that Kevin had chosen for me in November 2022. In Janet’s referrals she even stated that the reason for the referral was seeking guidance for how to get me into the job Kevin had chosen. I was even sent a unpleasant letter from Janet on trust headed paper that was emailed to me at something like 1600 on a Friday afternoon, informing me that I had not understood things, that I didn’t have a choice and that my new role would be the one that Kevin had chosen.

Funnily enough, only days later I was in a teams call with HR, Janet and my union rep, and out of the blue Janet informed me that the job I had been told for months was the only one available and fully suitable, was quote ‘only an option’. Yet again absolute chaos from such senior people. I was asked to consider jobs from a list of areas that Janet had provided, I emailed her following the meeting to ask if I could make a reasonable adjustment request that if I was able to identify potential areas that might be suitable, could I please visit the areas, speak with staff and find out how busy the environment was etc?

I was told yes, that could be accommodated, so over the weekend I chose two areas that I thought might be workable, I provided these to Janet in an email as agreed on the following Monday. I asked if I could visit the two areas before committing to either of them, suddenly I was told NO. You have to make a decision today, and based purely on the job descriptions that were very generic.

I was getting whiplash from the chaos, this was the point where I contacted the director of HR a lady called Amanda, I met with her alongside a friend who is also autistic. I spent over an hour explaining this whole situation, I even received an apology from her. I left feeling like things might improve.

What followed this was a protracted period that lasted until October of 2023, when I took the decision to resign from my role as a staff nurse. It was clear to me that I was being managed out of the trust, in total I had 13 referrals to OH over 2.5 years. Yet they always appeared to fall on deaf ears.

This is the main reason why I have since stepped back from my nursing and started working with other autistic adults. Tameside made it clear to me that they had no willingness to help me to stay in work as a nurse because of my autism. I did attempt to raise a further grievance that was heard informally by the trust COO but I was again lied to about the job I had been offered and there was zero in the way of contrition for how things had been handled.

I was not surprised to hear of other autistic adults that had worked for Tameside NHS trust that had been bullied out of the trust. I did consider an employment tribunal, but a couple of months ago I made the decision not to bring about a claim because I wanted to move forward in my life, plus I would not have the opportunity to talk about my experience of disclosing my autism to my employer and the chaos that followed.

I talk about my experience to help highlight some of the problems that I encountered and I am sure I am not alone.

I’m in a much better space now both mentally and physically, I am back at work and loving my new job.

Love and chirps

Daddy Lee x

Dear Bobby,

Yesterday evening I got home from work and found myself needing to power down, not because I have had a particularly bad day. Quite the opposite, I am learning lots and enjoying my new role.

I just think I am getting better at recognising my inner autistic need to power down. Part of my powering down routine is something that I did all the time as a child growing up. Growing up I had a tall cabin bed with a desk underneath, I would shuffle under the desk and crawl through to the space underneath the bed at the back.

I had no idea why this behaviour helped me to power down, I already had these behaviours of needing to almost cocoon myself in a small dark quiet space. I would also prefer to sleep in a sleeping bag and at night I would bury myself as far into the sleeping bag as I could, and without knowing I was already displaying my own autistic self.

When I powered down last night, it was pure and simple (hearsay pun not intended) I needed to darken the room once I have covered you up, put on a nightlight only, get under the duvet and engage into hibernation mode. I found myself stimming, the texture of the flannel sheet and the duvet felt good to me.

I am realising why I need to move my legs, why this soothes me and on some level I know that the sensory seeking behaviour is exactly what my brain is crying out for. It’s funny because these behaviours are those I did growing up, but once I left school and moved out of home to join the Navy I had to quickly learn to mask and behave in the same way as others.

The upshot of this is that I would no longer know that I needed to power down, and I would certainly not feel comfortable in stimming to help me process the NT world. What has changed? I think the fact that I am now working in a low arousal environment I am not burning myself out at work. I also see the autistic people I work with and how naturally their own stimming comes to them.

I have learned that my need to stim and power down is as natural as anything. I am becoming more comfortable in my own skin.

Speak soon

Daddy Lee x

Dear Bobby,

I know it is Wednesday and a little late with my blog post, I had planned on getting a blog out on Monday just gone but I wasn’t really in the right place for writing a blog.

As you know, I am now back at work and I am so far loving this new role. Working as a support worker and helping other autistic people I don’t think would have been my go to role, but as with many of my previous jobs I have have had the tendency to chop and change jobs and I have had many different types of roles.

Sailor, Checkout Operator, Bus Driver, Carer, Nurse and now a support worker. One thing I have learned since 18 is that I never really had a plan for what jobs I wanted, as in I will see a job and think “I can do that” and more often than not that is how I have got to where I am now.

I love my job but with previous roles this was not always the case, in fact I know that I have struggled in one capacity or another in pretty much every job. Most of my struggles have been in communicating with others, being very literal in what is asked of me. Many of the jobs I look back and think that was probably not a great choice for job.

Bus driving for example, I was quite happy driving buses but the problems arose from dealing with passengers. Following procedures only to be told off for essentially doing what I have been told. Nursing was a job that I loved and worked very hard to try stay in, the problem for me was that after only about six months of experience working in the NHS as a newly qualified nurse was that thing called a global pandemic.

Even without the pandemic, it is clear to me on reflection that a busy acute ward setting had the potential to overwhelm me and managing anything up to 15 patients whilst trying to constantly juggle my priorities as the situation changes was pushing me closer to burnout.

Clearly I needed to take stock of the situation and work out what it is that I think I am good at. I know I am very empathetic, I am logical and have a real passion for helping others. I like to think that working with other autistic people has the potential to bring me a lot of joy.

Something I spoke about last week was the fact that I am openly autistic with my new colleagues and managers, this is something that I am keen to talk about, not only to help them but to try and allow me to be me. I think I am possibly the only openly autistic member of staff and therefore I think it is even more important to be open about my brain and how I operate.

I have been giving the new job a lot of thought since I started and I am loving getting used to all of the service users that I might work alongside. I have been thinking a lot about this over the weekend, as much as to say that I have been thinking about my own autism and how there are things that I struggle with and that others also struggle with.

I think the reason why I am so keen on this new role is that I am learning so much more about my own autism. I am seeing the challenges that others face in interacting and processing information and many other challenges that most NT fail to notice or understand. In some ways it is helping me to think that essentially my own operating system is not that different to those I am helping, the difference is that I have been able to minimise my challenges and mask for a sizeable chunk of my life. I am now seeing how others thrive despite their autism and it is helping me to understand why I need moments of low arousal.

Essentially I feel like I have found the perfect role for me, I will hopefully be able to use my own autistic experience, along with my many years of masking. I like to think that if I was unable to communicate or had higher support needs and I knew the person helping me had a good understanding of autism and why I am the way I am, I would find life just that bit easier.

Last week I was able to see pure autistic joy, seeing the smiles of others just made it all worth it.

Long may it continue. Speaks soon Bobby Boo

Love Daddy Lee xx

Dear Bobby,

I hope you are well, now that I have returned to work I am away from home three days a week. I know that you have noticed this because when I get home from work, you stay with me once I have fed you as if you have missed me.

Although I have only been officially out of work since October 2023, I have been craving structure and routine for so much longer than this. I know that I do better with both my physical and mental health when I have a solid routine.

Returning to work has given me the much needed structure that has allowed me to get into a successful sleep routine, I am now getting to sleep at a reasonable hour and waking up before my alarm clock goes off.

When I think about how much has been thrown my way since I qualified as a nurse in 2019, I think it is fair to say that I have surprised myself in how much I have battled and how far since then I have come in rebuilding my own resilience.

For such a long time I have been desperately seeking a role that would allow me to feel valued, needed and worthwhile. So I have started a new role that is not nursing, I am now working to support other autistic adults. Although I have my degree and my nursing qualification in tow, I do not feel compelled at the moment to return to a nursing role.

The jury is still out regarding nursing, I decided not to let my nursing registration lapse just yet because you never know what opportunities may arise. For the first time in such a long time I feel like I have something to offer, and right now that is supporting others.

In many ways, those that I have the privilege to support have similar challenges when navigating the NT world around us. I feel fortunate that my own disability has not stopped me from seeking employment, serving my country both in the Royal Navy and also on the front line during the COVID pandemic.

I am now in a position as I enter my fourth decade where I feel comfortable in my own skin, content that I operate differently to others but resolute that I am just as worthy to deserve love, happiness and all that life has to offer. I might be autistic but that is just my operating system, I am so much more and have so much more to give.

For so long I saw my late diagnosis as a burden, but now I think that in a lot of ways it has given me almost 40 years of experience in understanding NT and the many subtle differences in the way my brain operates. I think of it like being bi-lingual, I might not get it 100% all of the time but I can get by but with the added bonus of understanding the many pitfalls that can challenge an autistic person.

It is my hope that my own lived experience will give me a greater understanding of how to better support those autistic people that I am working with. In the short time that I have been in this role, I feel very lucky to be able to be where I am today. I hope that it will continue for a long time.

Today is friday and I have had a great week, I look forward to many more.

Love you

Daddy Lee x

Dear Bobby,

I have been thinking about what to write about for a few days now and I am drawn again to the subject of autistic people in employment.

As we are approaching world autism acceptance week, I have been struck yet again at how it is estimated that only 29% of autistic adults are in employment. I find this statistic shocking and so frustrating when I think of people like me that have struggled with employment over many years.

So I wanted to explore my thoughts on the current disability confident scheme, and why I think it should be supplemented by a neuro diversity confident scheme to help recognise those employers that see value in employing autistic individuals.

In my own experience, what has been clear to me is that the current disability confident scheme that many organisations use has the potential to forget about those individuals that consider themselves to be disabled by the environment around them or who have hidden disabilities.

There are many people such as myself that consider themselves to be disabled, but not specifically because of their own autism, but disabled by the NT world around them. I hear this time and time again when I talk to my fellow autists about the barriers and challenges they face.

When I worked for the NHS as a nurse, I recall looking at the Workplace Disability Equality Standard (WDES) report on the figures of disabled staff within the most senior NHS pay band roles. The stats show a disparity between the bulk of employees within the organisation that have declared a disability and those at the top that make and take decisions.

I understand that those within the most senior roles are much fewer than the wider workforce, but it still creates a glass ceiling for disabled and neuro-divergent staff alike. I believe this is one of the reasons that I was managed out of the NHS trust that I worked for, if you ignore for a moment the equality act and mechanisms such as occupational health. If you have a person who is unable to relate or show empathy for ND staff, the double empathy effect is a culture of NT decisions adversely affecting ND staff.

The reason why I said to ignore the equality act and OH support if because even with these, there are those who will routinely be seen as square pegs in round holes. In my situation I was managed as a NT nurse, the typical acute ward nursing role and the round hole standard that I was held against was never going to fit.

Each and every time I was referred back to occupational health, the management was seeking the answer to how to get the square peg me to fit into the NT round hole nurse. I realise that there is often a lot more involved but the ping pong between those making decisions and those providing support left me feeling stuck in the middle and without the empathy and recognition I needed.

This is why I believe that for employers to show themselves as disability confident, they are often forgetting to take into consideration those ND staff that with adjustments could be supported into employment. If you have a ND inclusive culture that runs throughout your organisation, then surely you are more likely to attract talent and retain valuable staff.

I often think about the size of the NHS workforce, which I believe is approx 1.4 million people. This would mean an estimated 14,000 ND staff work within our sector potentially unaware of why they might be struggling. The 1 in 100 estimate for ND people is quite probably greater meaning an ever greater chunk of the NHS is neuro-divergent.

This is why I think that organisations such as the NHS should employ a new ND confident standard, that shows to employees that they recognise and value the many transferable skills that can be brought by seeing the world a little differently. How an organisation the size of the NHS could instil an ND inclusive culture that encapsulates the widest possible range of roles and at every level.

In the same way autism has moved from autism awareness to autism acceptance, isn’t it time that disability confident includes a wider neurodisability confident scheme?

I would be interested in the thoughts of others, because acceptance needs to cover how companies are pro-active in nurturing a ND inclusive culture. I think that is the only way that the 29% figure I talked about at the start will increase.

Dear Bobby,

In 2022 I was tasked to manage an autism support project for my employer, I was only given three main objectives and the look was to carry out an assessment of the current status and provide an assessment via a GAP analysis.

The following report was completed by me and delivered in September 2022, following delivering this document, I was informed by the deputy director of nursing KPE that they wanted me to remain in this post until at least December 2023.

I was so happy with the reception of the work that I had put in to this project, I would even continue to produce a draft document for my employer to identify short medium and long term plans for how to improve the provision and support for ND patients.

Following this project, I was invited to a meeting in November 2022 in which I had brought along a dictaphone with me because I struggle to retain information in big meetings.

I will go into more detail about what happened that day in that meeting and why I was removed from the project by the senior management within the trust.

I wanted to share this information with you in my blog as this was work that I carried out whilst managing the project. This was my first experience of managing a project and I was very proud of the way in which I was able to work on my own.

This is a short blog post and I will continue to talk about my experience of working as an autistic nurse in the NHS.

Speak soon

Daddy Lee x

Dear Bobby,

So I guess I should start by saying that this blog post has been in the back of my mind for a few days now. The week is finally here and tomorrow I start a new chapter of my life.

How am I feeling? I think it is fair to say that my mind has been a emotional bouillabaisse for some time now and now the moment is almost here I feel like I need to articulate how this feels.

I think it is also fair to start by saying that this moment has felt to me like a light at the end of the tunnel, for many reasons and it has also felt like an absolute age in getting to this point. It is a point that I am not sure I ever thought would come into fruition, no matter how many times I have tried to move past my experiences of late it always felt like a pipe dream.

When I say ‘it’, what do I mean? There are so many words that I could use to describe how life has felt to me for so long. I have suffered deep depression, anxiety and thoughts that I would be better off taking my own life. I have the physical and mental scars to prove it. I endured the mental scars of being thrown into the NHS with only a few months experience as a newly qualified nurse. I buried the hurt, anguish and trauma of COVID deep down where it sadly ate away at me whilst I juggled the impact of a late autism diagnosis.

I battled to face the post traumatic stress head on and relived the raw and harrowing memories that so many bad deaths left behind. I have lost a parent and the grief that followed. I have taken my late diagnosis of autism and owned it, because why wouldn’t I? I have stood firm in the face of a barrage of lies, bullying, harassment and the eventual managing out of the trust.

The reality is that ‘it’ doesn’t even begin to scratch the surface of the tumultuous times I have endured since 2019 and I do not talk about these events for sympathy. On the contrary, I speak of them as a way of reminding myself of where I have been and how far I have come since. I believe there is a lot to learn from a path to recovery that has been peppered with so many challenges.

I think it is fair to say that we all have a view of what our ‘self’ is. I had modelled my view of myself and how I function on the neuro-typical observations that I had learned to mimic over 37 years. I had tried again and again to present myself as the version of myself that I thought was me being me. I imagine that over the first 37 years of my life trying to chisel myself little by little into the statuesque version of me, with each passing day I was able to chip away and try (in vain) to reach the point where I was confident I had revealed the true likeness of Lee.

Unfortunately, the reality is that I was never going to reach a point whereby I was content with the finished article, I can only assume I would have died trying to find the finished article. So when I was told in 2021 that I was autistic, I suddenly understood why I felt like I was forever failing to reveal the real me. I had been furiously chiselling away trying to model myself on the neuro-typicals around me without the knowledge that no amount of chipping would allow me to present as the finished NT article.

The events since 2019 have been the most challenging of my life, they came at me like a sledgehammer and smashed the pre 2019 model of Lee into dust. In so many ways I have resented my diagnosis, argued at how much I want to be ‘normal’. I have resented the managers at Tameside for the stress, anxiety and bullying that they allowed to happen. There are so many other things that I wished I could have changed, but in so many ways the events since 2019 have allowed me to mould the first authentically autistic version of who I am for the first time in my life.

Blessings come in many forms and although they might feel like life will never get better, they sometimes help reveal the real version underneath. I count my blessings each day and I move forward in life knowing that I am the authentic version of me. I have learned to let go of the things that are holding me back and embrace the path that I am now following.

Would I change the past four years? That is a tough one but the answer is a definite NO. I feel like me for the first time in my life, I am happy and content in my own skin and that is something that I could never have believed in my darkest moments.

I am deeply grateful for finally finding some inner calm, peace and self kindness and long may it continue.

Thank you for listening Bobby,

Love you, Daddy Lee xx

Dear Bobby,

I started to talk about my experience in remaining employed as a nurse in the NHS in my previous blog post. I started to talk about the many barriers that autistic people face if they have chosen to declare their neuro-divergence. My experiences are certainly not going to reflect the experiences of others but the broader subject of the challenges we face I believe will have some common themes.

I was in this position in early 2021 and I was both in autistic burnout as well as demonstrating significant signs of PTSD. Since I had been made aware of the possibility of being autistic, I found myself reading as much literature as possible and the more that I read, the more I looked at myself and asked myself am I autistic?

At the point of writing this post, clearly I am/was autistic but back then the concept that I could be absolutely side swiped me. Following the diagnosis of course I had the right to not declare this, but I ask myself now how this could have been achieved?

The reality is that my mental health was at rock bottom and the last thing that I wanted was to be off of work any longer than necessary. I believe this is why I never gave declaring my autism a second thought, I knew that the situation I found myself in was like trying to put the genie back in the bottle. I know that I didn’t consciously think to myself should I tell my manager.

I have previously mentioned how badly my initial return to work had gone, it was like they knew the information but completely failed to understand how to respond with this piece of information. I think this is where my own circumstances show how the trust had a complete failure to recognise my autism.

I say this because following my autism and PTSD diagnosis I was referred to occupational health 13 times in 2.5 years. Maybe I was naive in thinking that I could be both a nurse and also autistic? At that time, I didn’t see my autism precluding me from continuing to work as a nurse in the NHS.

When I consider the 13 times that I was referred to occupational health, to me it felt like my managers just didn’t know what to do, and repeatedly rolling the dice in the hope that the result would be different. If they ask OH again and again that miraculously I would suddenly come back as ‘normal’ seemed to be their only plan on how to deal with me.

Each time that I spoke to OH at length, bearing in mind each referral would entail an hour long telephone appointment. Each call would go over the same information, am I still autistic? Obviously! I would answer the questions about how I was managing, what things I struggled with, what were my triggers, what steps I was taking to help improve my health?

Of course each and every time I had these appointments, they would feel like yet another hoop to jump through, and I would be ever hopeful that the report following that would be sent to my managers would make a difference. Time and time again the reports that followed would provide the managers at the trust with information on how to engage with me, how to support me to return to work. Time and time again I watched as these reports were sent and nothing would change.

In the many times that I have reflected on these times since, these appointments were simply lip service, jumping through the hoops of these referrals without any tangible improvement only reinforced the feeling that I had very little chance that things would change. I believe it was Albert Einstein that said repeating actions without any change and expecting a different outcome is the definition of madness (or words to that effect).

I think this was the biggest barrier that I faced following my diagnosis, and largely left me feeling like a square peg trying to be forced into a round hole. Each referral provided extensive recommendations on how to support me to return and remain in work but they went unheard. I was being managed by people that were failing to recognise that I was never going to be a round peg. I was seen first and foremost as a nurse, regardless of my autism.

This was where things fell apart, the recommendations to management laid out my autism and that under the equality act I am (in theory) entitled to request reasonable adjustments. The adjustments and recommendations could have made a huge difference to me in finding a role within the trust where I could thrive and often tiny adjustments would have had the biggest impact on me.

I honestly believe that my managers at Tameside saw me as a problem because I essentially am wired a bit different, I believe that in their desire to simply slot me back into a generic ‘acute nursing’ role they were happy to ignore the advice they were told so many times. My need to have reasonable adjustments in order to help me work was constantly overlooked, even being agreed to one week and the following week refused.

So when I think about my experience, it is littered with moments where they could have worked with me and seen me and my autism as an asset rather than a problem. I am so glad that I am no longer working for the trust, because you can have the best intentions with ‘disability confident’ but you are set up to fail if the culture precludes them being ‘disability competent’.

Thank you for listening to this blog.

Love Daddy Lee x

Dear Bobby,

Welcome to March and here’s to another step closer to the much needed structure and routine of employment.

I am sat here on the bed today, the sun is shining and you are happily chirping at me which I know is because you are a happy boy. On one leg, all fluffed up and bobbing your head tells me that I have a very happy budgie.

The topic that I wanted to talk about today is about the barriers that often are put up and preclude us neuro-divergent people from being able to gain employment but more importantly to remain in employment.

I know from my own lived experience over the past 20 plus years that the ability to do a job is often not the reason for encountering friction and problems. On the contrary I think as potential employees we are very keen to have meaningful structure and routine that we crave.

I often reflect on the many different jobs I have done since leaving school at 16, shop assistant, checkout operator for a national supermarket chain, my 12 years in the royal navy, bus driver, care worker, student nurse and finally a registered nurse. Each of these areas appeared to me as viable employment choices, with the reality that often the reason I left and moved on was that I would ultimately struggle with communicating with others. I would clash and fail to understand jokes, sarcasm, the messages that others would decode ‘between the lines’.

This is something that I struggled with then and throughout my working life, however I am now in a position that affords me some extra clarity in which it explains to me why it is that I struggle. I am blessed with a brain that often fails to see the shades of grey in the middle, I interpret the humour / jokes of others often in a very literal sense.

Late diagnosed autism has enabled me to be able to start filling in the gaps. I often think that it is like trying to do a maths question but without knowing if I am to multiply, divide or add. Spending all my working life trying to answer a question but always coming up with the wrong answer.

My late diagnosis doesn’t make answering the question any easier, it has just enabled me to fill in the blanks, allowing me the opportunity to answer the question in my own way.

When I consider the barriers that I have faced in remaining in employment it is the challenges that historically I have faced that allow me to analyse where I go from here. I have had a lifetime of getting the calculation wrong and it has only been in my most recent job as a nurse where I have been able to understand the question.

The biggest challenge or barrier to remaining in employment in the past couple of years has without a doubt has been in trying to get my managers to understand that I do not operate in the same way as an NT. I like to think I am an intelligent person, but with the best will in the world, being autistic and being managed by NT managers that fail to understand my operating system either intentionally or through sheer ignorance is likely to end in failure.

This might not seem that big a deal to many but to me it has been the biggest challenge to remaining in work and in being understood. For example, many organisations these days often advocate that they are disability confident, but in my experience this does not always translate into an organisation being confident or competent in understanding and being able to support the employment of autistic staff.

Aside from the many challenges that I have faced historically prior to my autism diagnosis, these add a degree of historical context but only as far as that. It has been the time since my diagnosis in May 2021 where the real challenges began. I see the many challenges as both unique to me given what had happened but also highlight some of the basic things that organisations need to get right if they are to be truly disability confident.

The first challenge I recall following my diagnosis was in trying to communicate this to management and conveying my need to start to process the autism bomb that has just side swiped me. Even though I had my own suspicions surrounding my neurotype, receiving a diagnosis is a big deal and it was for me.

The first barrier came in the form of where the trust would employ me now I had been confirmed autistic, in addition I was also trying my best to process what would eventually be named severe PTSD. I had only had my autism diagnosis a week or so when I was called by my then manager who informed me there was a matron that wanted to get in touch with me to talk about potential roles. I agreed and a few days later I was called by the matron, in this call I was informed that she had two roles that they believed were suitable. This was the SDEC (same day emergency care) and the Outpatients department. I recall informing her that I had only had my autism diagnosis a couple of weeks and I had yet to discuss this with occupational health, therefore I couldn’t say yes to either until I had at least spoken with them (for which I had an appointment booked).

In retrospect I believed that the process of returning to work would be as smooth as possible. I had my planned appointment with occupational health to discuss my diagnosis and the impact this was having on me and my mental health, please remember I had not even started to get support in processing the PTSD. Occupational health were great and sent through a report to my new manager.

I was still off work sick at this point and believed that once the manager had reviewed the occupational health notes they would indeed start looking at suitable areas with me. Unfortunately, this never happened and the reality was that without my knowledge the matron that I had spoke with had a meeting with one of the heads of nursing and between them they had decided which role would be suitable.

This was done without any involvement with me or taking into account the advice from occupational health. It turned out that a few weeks later I received a message from a colleague I knew wishing me luck in my new job. This was the first that I had been told anything, I had no communications from my new manager or the head of nursing informing me. Therein lies the first barrier I have faced, the job they had chosen for me wasn’t a suitable role for me, and if they had involved me as per the request of occupational health I would have made it clear.

I returned to work eventually and tried the job that they had chosen for me, I lasted only a few days before I was in tears and having a complete meltdown. They had thrown me into an area within the trust that was causing me sensory overload. I had contacted the head of nursing that had selected this and it was swiftly changed.

This was the start of many barriers that were put in my way and began a sustained campaign of mis-management that would ultimately conclude in my tendering my resignation and walking away. I have mentioned before that I had planned on seeing this through to bringing a claim against the trust at an employment tribunal. However, I made a decision in the last couple of weeks that some things you need to just let go of.

Since I had resigned, I have begun sleeping again with some regularity. My mental health is on the up and the resilience that I have gained with the support of the GM resilience hub has allowed me to try and see the bigger picture. I know this is somewhat a cliche, but the reality is that taking on an NHS trust and calling out the bullying culture that exists at the top was a fight that I conceded was not helping my own recovery.

In addition to this, I knew that even if the trust chose to settle outside of a tribunal I would be restricted in what I could talk about. The importance of being able to talk about the experience I had and the barriers that I faced cannot be understated. It is more important to talk about my experiences in the hope that it validates the experiences of other autistic people in gaining work or remaining a valued employee.

Talking about the myriad of fuckery that I have overcome is not something that I can cover in just the one blog post and so I will return to the Tameside saga in the future and continue to call out how they treat disabled staff. I know that I am not alone in feeling broken for how I was treated, in time I would like to share others experiences of how they were treated following an autism diagnosis.

For those of you who have made it to this point in my blog post, thank you. I am finding writing an outlet and cathartic. I hope in some way it helps you too.

Speak soon baby boy.

Love Daddy Lee x