Actions not Words!

Are Healthcare Providers really doing enough for Autistic People?

I’ve recently had some pretty major surgery at a well-known specialist hospital within Greater Manchester.  I was quietly confident during my pre-op assessment that I’d be in good hands.  After all, The Health and Care Act 2022 introduced a statutory requirement that CQC registered providers ensure their staff receive Learning Disability and Autism training appropriate to their roles. 

It goes on to state that staff must:

“receive appropriate supervision in their role to ensure they demonstrate and maintain competence in understanding the needs of people with a learning disability and autistic people, including knowing how to support them in the best way.”

This legal requirement applies to:

• all services and all settings, not just specialist services

• all health and care staff, and ancillary staff, who may have contact with autistic people and people with a learning disability.

  
  

The Oliver McGowan Mandatory Training was developed in response to Oliver’s story; to help prevent the avoidable mistreatment and unnecessary deaths of people with Learning Disabilities and/or Autism while receiving care from Healthcare Providers. The training aims to raise awareness and drive meaningful system change. In September 2025, the Oliver McGowan Code of Practice officially came into force, marking a pivotal moment in delivering safer, more person-centred care for Autistic people and/or people with a Learning Disability in Healthcare settings.

During my pre-op, both my Autism and ADHD diagnoses were recognised, and as a result, I was asked to fill out an Autism Health Passport.  If you haven’t seen them before, they’re a really great tool and are supposed to help Autistic people explain their needs, how they prefer to be communicated with, and help Health Professionals support us better when in their care.  This document can be downloaded from the National Autistic Society website, so it’s really easy to access, and I was happy that they had actually given me the form to fill out.  I felt reassured that my needs as an Autistic person would be recognised and be taken in to consideration, and it would mean an already stressful experience would be managed in a way that prevented additional and unnecessary emotional distress.

A few months ago, I attended a Men’s Health Forum where a guest speaker, Professor Paul Galdas, was talking about his role as a Professor of Men’s Health at The University of York, and his contribution to the Government’s Men’s Health Strategy which was published in 2025.  During the forum, my Neurodivergent brain was wondering what ‘strategies’ were actually documented for Neurodivergent people as a whole, not just men.  Whilst he was speaking, I looked online to see what I could find out – I knew I wanted to ask a question, but I couldn’t quite decide what I wanted to ask. 

The Strategy says that all Healthcare Providers should receive Mandatory Autism Training – and the preferred or recommended choice is The Oliver McGowan Mandatory Training.  I absolutely take nothing away from the training package and Paula's work campaigning to make significant system changes. The training is fantastic and I'm so glad it has finally been rolled out. But my question to Prof. Galdas was this: "How do you know that people who take the training are actually putting it in to practice?  Not just locally, but Nationwide.  How do you properly check that Healthcare Providers aren’t just taking the training as part of a tick box exercise, but are actually putting it to use?" I didn't really get a specific answer to this question, but Prof. Galdas did agree that there's still masses of work to do in this area.

I’ve been to so many Doctors and Hospital appointments throughout my life. In places that now claim to be Autism trained and ‘aware’. They mostly talk a good talk, but in the stark reality, when it really comes down to it, they don’t always practice what they preach.  So whilst a small minority might do things properly, in my experience, the majority of people I’ve encountered in Healthcare settings, have completely overlooked my Neurodivergence.  Would this be the case if I had a disability they could see? I highly doubt it.  If I was struggling to walk I’d like to think I’d be given assistance to help make it more comfortable for me, so why is it different for conditions you can’t see? There are so many small adjustments that can be made to every day interactions that would make a huge difference to the lives of Autistic people, without actually costing a penny!

I know the NHS is under a lot of pressure, and I am absolutely not taking away from the fantastic work they do.  My surgery went really well, albeit a five hour ordeal!  My surgeons are some of the best in the country in their field, and I’m so grateful to them for finally treating an issue I’ve had for just over twenty years. The Nurses and Healthcare Assistants at the hospital were all lovely in the main, and I know they do a challenging job for not an awful lot of pay. They work long hours, have so much responsibility, and a million things to think about on a daily basis.  But, from the moment I stepped on to the Ward, to the moment I left, my Autism Health Passport wasn’t even looked at. To some, this might seem really insignificant in the grand scheme of things. You might think, "what are you moaning about - you got free healthcare". I do recognise that, and I am grateful I live in a country where, for now, we have a National Health Service. But if organisations say they're putting something in to practice, then they really ought to be doing it! Actions not words, right?

I told the Nurse who admitted me about my Autism and ADHD.  I also re-disclosed my conditions to various people I met during my stay, along with details about the medication I was on and why I was on it – now you would think that those conversations would prompt a thought along the lines of "oh, this person will have an Autism Passport", but unfortunately in my case, it didn’t.

I’m able to speak up sometimes, and tell people what my needs are, but the whole point in filling the Passport out is so that you don’t have to keep repeating yourself and advocating for your needs.  It’s a simple idea but can make such a difference.  Some Autistic people aren’t able to advocate for themselves, so what happens to these people? How do they express their needs if their Passports aren’t even looked at or shared?

I managed to tolerate some of my sensory difficulties I was exposed to for the first day after surgery; I was heavily medicated and in and out of sleep, but when the sedative effects of the medication wore off, it was extremely stressful and frustrating that my needs hadn’t been acknowledged, let alone considered, and when I was able to speak up, I made sure I did.  But I shouldn’t have to. That's the point of the Passport and the Training is supposed to help make Healthcare visits much less stressful and for the system to be improved for Autistic people.

I cried, I felt deflated, frustrated and really distressed.  One Healthcare Assistant apologised and said it should have been picked up.  She said she was 'just' a Healthcare Assistant, but she was the only one who acknowledged my needs on that Ward. Probably not on a fantastic wage, had to do the jobs that aren't the nicest, and the only person who was genuinely bothered that nobody else had taken the Passport in to account.   The Nurse who came over to me during my interaction with the Healthcare Assistant, just laughed and said "oh Ruth". 

"Great stuff" I thought – just what I needed at that time! But by then it was too late to change anything. I had already reached my limit, my stay in hospital was almost over and I was about to be discharged. The Nurse told me they usually check things like that, which didn't really make me feel any better at that point. Was my case a one off or was she just saying that to try to make me feel reassured?

The Passport document is small, it’s simple to read, and it provides a basic overview of what your needs are.  It takes less than a minute to read, but helps Healthcare Providers understand our needs, and helps Autistic people feel less distressed when being put in an environment which is out of our control. 

Bright lights, loud repetitive noises, lack of information or detail about what’s happening, inappropriate communication, information overload, being touched, dealing with smells….these are all things that are documented in there – to help Autistic people feel less stressed and anxious.  It’s not rocket science, but yet some providers still can’t seem to get it right, and it’s just another example of people saying that they’re taking action, when in my experience, it seems like a tokenistic exercise and a way of organisations saying they’ve ticked the Neurodiversity box. 

My advice to anyone who comes in to contact with Autistic people in their work, or otherwise, is this:  Read Oliver’s Story, do some recognised Autism training, but actually pay attention to it; don’t rush through it, put things in to practice, and do the small things that take seconds to put people at ease and make our experiences much more tolerable.  Autism and Learning Disability training is mandatory for a reason! Not everyone can speak up, and instead of assuming that we're not distressed because we 'look ok', by just checking in with us and asking a few simple questions, you can make a huge difference to our whole experience.

Thanks for reading. I just wanted to share my thoughts - now back to recovering!