When you’re a child, your parents take you to medical appointments. Teachers and support staff also liaise with medical professionals for physical and mental health. You’re looked after.

But once you reach 18, you are on your own. Without the right support, it can be difficult to know who to contact for help and how to do this. Even when you do know, there can be many barriers in the way that can put you off getting help.

These are the 10 main barriers that I and many other autistic people face with regards to accessing healthcare:

Getting an appointment

Often doctors require patients to call the surgery before a certain time of day and wait in a long queue. For autistic people, this can be very scary. The thought of having to use a telephone to speak to an unknown person and verbally communicate problems can be very daunting. I am unable to do this and require someone else to do it on my behalf. This does not often get understood and often the doctor wants to speak to me personally. But if I could, I would already be doing so.

The thought of being asked to speak, or saying something different from what had already been said, is enough to cause me to have a panic attack in itself, let alone the actual appointment.

Telephone appointments

Since Covid, some doctors and hospitals are relying solely on telephone appointments. I simply can’t cope with speaking to someone without visual aids to help, and this includes seeing the person. Autistic people are forever being told about improving eye contact and the need to look directly at the person who is speaking, and about facial cues and body language. Yet it is expected that medical issues can be easily diagnosed without ever seeing what the patient looks like or the affected area. In mental health cases, the body language and facial expressions that neurotypical people claim helps tell much of the story of what is being said would be missed if only the voice is heard.

Getting to in-person appointments

Even when hospital appointments do happen, there can be so many barriers to accessing them. For example, even the journey there can be distressing.

If someone can’t drive or doesn’t have anyone to drive them, they would have to go on public transport which can create barriers to begin with.

Finding out where to go

When they arrive, they have to enter a very large building, often with multiple directions, lots of noise and sensory distractions. Often it requires being stopped by a security guard or having to visit a central reception, which can be very daunting with queues and lots of people.

Sensory overload

When you get to the ward or department, there might be loud music playing. Almost certainly there are noisy machines, squeaking floors, people making noise, loud conversations. This often leads to a sensory overload.

Processing

The next step is to be asked for personal details – a request often repeated time and again. This is a nightmare for me personally, as although I am aware of this information, being asked for it on the spot makes me panic.

I struggle to get the words out quickly while processing what has been asked, trying to get my mouth and brain to work together to say the right words and say it in a way that makes me appear normal.

Support

Another big issue is the need to have a carer or parent with an autistic person at all times. This is a problem that has arisen even more since Covid. Adults are expected to attend appointments alone which is just impossible for some people, not only due to other health concerns but because they would simply not cope or be able to communicate without the support of someone else. This can be questioned by staff and the support person can be told to wait outside or that the doctor does not wish to have them in the room. I have personally experienced this on numerous occasions. This is not only discriminatory but would affect the ability to receive the right care due to lack of understanding and inability to communicate .. or in most cases the refusal to attend appointments due to this inability. It’s not being stubborn or awkward – it’s a necessity.

Attitude of professionals

But communication difficulties do not equal an inability to understand. Treating people like children, for example, or using dumbed-down language and baby voices to explain things can be insulting and offensive. All patients require the same level of respect.

Not being listened to

From personal experience, autistic people are often ignored in health complaints due to doctors thinking it’s the result of all illnesses. I was made to feel like I was crazy having health complaints from a young age – one of which required an emergency operation due to not being believed and it being written off as anxiety. When I was a teenager, another incident occurred when a doctor made my parents and I believe my health issue was simply neurological and that I was making it up. The complaint I went in for did deteriorate and despite knowing what the condition was due to family history, the belief I was crazy delayed me getting help for almost five years. It was only after insisting on the test to diagnose it that I was proven right.

People need to listen and trust people about their own bodies and not to let judgements about neurological conditions affect the care and practices involved.

Lack of consistency

Another problem is the lack of consistency in support between different hospitals, doctors or even staff within the same department. 

Support is needed for autistic people to reach out for healthcare. For example, a booking system which doesn’t require the use of the telephone – perhaps an online system or text to a special number with trained professionals.

Another useful tool would be changing the way information is communicated when at a hospital. A QR code could be given to be zapped by hospital when patients arrive, or even a physical card that has information like name, address, date of birth and how best to interact with that patient and what their needs are. Then staff could adapt how things are done and communicated.

Doctors and hospitals could offer times when music is turned off, lights dimmed in waiting rooms and more distance enforced between people to make it a sensory-friendly environment. 

It would also be useful to pre-warn of delays via text, if a clinic knows they are running at least 30 minutes behind. Neurodivergent people who have anxiety about sitting in waiting rooms for long periods of time, progressively getting closer to meltdown as all the sensory overloads worsen, could arrive later for a new appointment time to shorten the time they’d have to wait.

These are small changes but they would have a big impact on wellbeing.

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