My name is David, I'm a man in my twenties and I'm Autistic. I also function in the Mild Learning Disability range and have complex mental health diagnoses. I communicate through typing on my tablet or Makaton signing.
Bad NHS experiences
Sadly my experiences of the NHS have not been positive. There have been more negative and traumatic appointments in hospitals, doctors' surgeries and even NHS vaccine centres than positive appointments or ones where my needs have been met.
One thing I believe that is essentially missing is training for GPs, nurses, hospital staff and managers of these places that are done by Actually Autistic people themselves. In my opinion training seems to be from Neurotypical minds about their perspective of our disability. But how can a Neurotypical simply understand what we experience, what we feel or think or how much discrimination we have to deal with on a regular basis? Something so simple to most people is often very challenging and overwhelming for us due to the lack of accessibility or reasonable adjustments being met.
Having multiple chronic illnesses, I have used many separate NHS hospitals and departments. These include: Endocrinology, ECG centre, Ultrasound, Allergy Services, X-ray, Eye Hospital, Children’s Hospital Ward, doctors’ appointments and NHS vaccine centres.
My experience is that they fail within the first 5 minutes of me entering the room. This is due to the failure to read my hospital passport which states my physical, sensory and mental health needs. These should be seen as a guide on how to make the appointment successful, but I find they are often ignored or placed aside and forgotten about.
In the past I have made a complaint through PALS about the way I was treated in a hospital and how rude a staff member was towards me. Their response to my complaint was: "I was not made aware of David's specific learning, communication or time requirement needs".
We had rung up the previous day asking if my information had been passed on to the right people and they had said everyone was prepared, and yet none of my needs were met and the person performing the ultrasound was not informed I was Autistic.
I have come back from many hospital appointments feeling overwhelmed, misunderstood, ashamed or anxious. For me, it makes such a big difference when there is even just a little bit of understanding and effort made to communicate to me in a way I understand or if my sensory needs are met.
Written below is my experience of what has made hospital appointments and NHS in general so inaccessible.
- Being called a "child" because I’m unable to talk verbally and need my carer in all appointments.
- Doctors trying to force me to speak verbally to them, to the point I was hiding in the corner with my fingers in my ears.
- Doctors refusing to talk to my carer until I respond verbally (which I can’t do) even though I have written consent and signed a document.
- My carer being taken away from me and told I can cope without them.
- Being told I have no facial expressions so couldn’t tell if I agreed with him (which is an Autism trait and made me feel embarrassed it was pointed out)
- Being asked to take off my sunglasses
- Not giving me a double appointment space
- Being rushed (Like the cancer centre that has 15 minute appointments and they kept rushing me)
- Being asked too many questions at once
- No one explaining what is going to happen or what to expect during the procedure (like an ultrasound or ECG)
- Not notified of changes such as a different doctor or a change to the appointment.
- Asking them to ring my carer’s phone but they still ring my phone.
- I’ve had a professional get very close to me and ask if I’m scared of them repeatedly and then laughing.
- Lots of sensory challenges everywhere: machine noises, clocks ticking, babies and children, bright lights, temperature, the smell of cleaning products and many more.
- Staff not acknowledging that I may agree to everything they say and that I don’t understand what I’ve consented to.
- My hospital passport not being read
- Being told I can’t access support or medical help due to my disability and communication needs.
- I don’t get easy-read information and so I’m often unable to understand the information that has been printed off or I’m not given a social story of what to expect before I go
- Having several doctors or nurses in the room
- Having a person/group who is training in the room. This was worst when I had to stay in hospital for a week and they allowed a group of about 10 people to crowd and look at me. This made me very anxious as I don’t like people being near me.
- Doctors touching me without letting me know or preparing me.
- They don’t believe my physical health symptoms and just tell me it’s anxiety. Or they don’t believe that I’m experiencing pain because I laugh a lot during these times instead of crying.
- Being banned from certain centres and hospitals due to my sensory needs, for example mask-wearing requirements when we have stated that I’m mask exempt. I've been yelled at in front of everyone in a waiting room for not wearing a mast, which made me scared and embarrassed. I've been told I can't have a vaccine without a mask when a wheelchair user without a mask could. It's discrimination because mine is a hidden disability.
How the NHS can do it well
Now what makes an appointment successful? Fortunately the endocrinology team that supports me have an amazing understanding of Autism. But this is the only place that I have received such fantastic support. The adjustments they make are:
- Allowing me to wait outside rather than in the busy waiting room. A person will come and collect me once the doctor is ready. I’m also allowed to use the private entrance for staff so I don’t have to go in the same way as everyone else. This way I’m not already overstimulated by just being in a waiting room. If I’m already overwhelmed before an appointment, I’m unable to process what the person is telling me.
- If the doctor is going to be longer than expected, such as if she is with another patient, they warn me of the change. Last time they let me sit with my carer in an empty room until the doctor was ready.
- The room is very minimal so no bright colours, sounds or distractions.
- They write down information that I need to remember. I really struggle with memory and once I’m out of an appointment, I cannot remember what has been said which usually makes these type of places inaccessible for me and the health problem that I came in for doesn’t improve.
- The doctor talks slowly, doesn’t use metaphors (and in the occasion she does she checks my understanding of what’s being said) she also doesn’t use complicated language. If I seem like I don’t understand, she will re-explain it until I do.
- The doctor is very patient with me and doesn’t rush when I’m trying to think of how to respond or when I’m typing slowly.
- She asked me about my sensory needs when we first met, about what would be helpful and not helpful.
- I’m allowed to fidget and wear my sunglasses.
- They will investigate anything that I say is painful or bothering me. If they refer me to another centre to get it checked, they write down all my needs on an extra note and send it off with the referral.
- She offers to help if I look like I’m struggling (like when I was finding it difficult to put my stuff away)
- She is very kind about my mental health. I feel able to be honest about what I’m experiencing with her and she makes me feel comfortable being able to ask questions about the effects of hormones.
Additional ways to help
I wish that hospitals gave easy read and social stories to any Autistic person who are using the service, via post or email before the appointment. This helps a lot with anxiety about what’s going to happen and what to expect.
It’s highly important that staff in a hospital or any NHS setting are educated on masking, which is very common in the Autistic community. This is where a person may hide their Autistic traits to fit in, to not cause problems or be a burden to others or because they feel ashamed about being Autistic (other reasons exist too!) Some examples of masking include: forcing themselves to not stim, forcing eye contact or conversation, not allowing themselves to wear ear defenders or use fidget toys, not showing they are distressed by sensory overwhelm or changes that have happened or pretending they understand the information being given to them. Just because someone isn’t showing they are distressed on the outside, doesn’t mean that’s what’s happening on the inside. Often I will mask during these appointments and then come home and smash my room up due to my needs not being met. Other times I have what’s known as a shutdown, which is the opposite of a meltdown. I lose the ability to move or think and can sleep for several hours from the distress. This is why it’s crucial that the Hospital passports are followed even if it doesn’t seem like it’s making a difference.
What I would like doctors, nurses and hospital staff to know is that everyone experiences their Autism differently. If you’ve met one Autistic person... you’ve only met ONE Autistic person. Often you can’t tell if the person has a disability which is why it’s so important to understand that it’s called a hidden disability for a reason!
So making sure to follow what’s written in the passport is crucial! Just because I don’t look like I’m struggling doesn’t mean that I’m not.