What is Alice in Wonderland syndrome and how can we find support?

We all struggle with body image from time to time. But what if your actual perception of how you (and things around you) look is being affected? We explain more about Alice in Wonderland syndrome, how it affects different people, and where you can find help to stop from falling down this rabbit hole

It can be hard to remember sometimes, but we each perceive the world in our own unique way. While some differences are more common – we’ve all heard of colour blindness – others can occur much less frequently.

Despite the whimsical name, Alice in Wonderland syndrome (AWS), also known as Todd’s syndrome, is a rare neurological disorder. First discovered in the 1950s by British psychiatrist Dr John Todd, and named because its symptoms resemble experiences that happened to Alice in Lewis Carroll’s famous novel, the syndrome can cause temporary changes in your visual perception, body image, and how you experience time. It can lead people to feel like they are physically larger or smaller than they really are, or that the furniture or room around them is shifting to become nearer or further away.

Mostly found in children, there’s still a lot we don’t know about this rare neurological disorder, why it happens, or what we can do to fix it. But, as with most wellbeing-related matters, with awareness comes some relief in itself.

How does AWS affect people?

Alice in Wonderland syndrome can affect your vision, hearing, and touch, as well as your perception of time – making you think it is passing faster or slower. Exactly how it can affect you varies from person to person, as well as episode to episode.

Typically, these episodes can last anywhere from a few minutes to half an hour, and common symptoms you may experience include:

Migraines
Size, perceptual, sound, or time distortion
Loss of coordination or limb control

Some people also experience a feeling of disconnection from their body, thoughts, feelings, and/or environment, which can be unsettling.

While children and young adults are thought to experience it more often, some experts think that adults may actually experience AWS more than is reported. As we often see with mental health concerns, stigma could be playing a role here, causing people to not reach out due to worries about describing what they are seeing, and being afraid it might be mistaken for hallucinations, or dismissed completely.

What causes AWS?

The actual causes of Alice in Wonderland syndrome aren’t currently known. Some experts believe AWS may actually be an aura (an early sensory indication of a migraine), or a rare type of migraine in and of itself. Other researchers believe it could be caused by head trauma, infections, or unusual electrical activity in the brain affecting blood flow to the parts of your brain that process your environment and visual perceptions.

Other possible causes are thought to be stress, epilepsy, stroke, brain tumour, or cough medicine. Those with a family history of AWS or migraines
may have a higher risk of experiencing it themselves.

But what’s important to recognise is that symptoms aren’t caused by hallucinations, problems with your vision, or mental or neurological illness, rather, they are caused by changes in how your brain is perceiving your body, and the environment you are in.

How to get a diagnosis

If you think you might be experiencing symptoms of AWS, the first step is to make an appointment with your GP. There currently isn’t a single test to diagnose AWS, so your doctor may need to refer you to specialists to rule out other possible causes of your symptoms. This could include getting an MRI scan, an EEG, and blood tests to rule out other viruses or infections.

How do you treat AWS?

While there aren’t currently any specific treatments to help with AWS, it’s recommended to rest and wait for symptoms to pass, as while they can be disconcerting, they aren’t technically harmful. Some doctors may suggest treating certain symptoms like migraines, as this may help to prevent further episodes.

If you or your GP feel that stress could be making your symptoms worse, they may recommend stress management or relaxation techniques, meditation or practising mindfulness. Understanding your stress triggers, looking after your wellbeing (physically and mentally), adopting healthier coping mechanisms, and ensuring self-care is a part of your regular routine, can all help to reduce overall stress levels.

Common recommendations can include over-the-counter painkillers, anti-sickness medication prescribed by your GP, acupuncture, or working with a specialist migraine clinic.

Typically, Alice in Wonderland syndrome will get better over time. It’s extremely rare to have any further complications or problems, so if reading about this feels like peering in a looking glass, it won’t last forever and you can find support.

To find support for your mental health, visit the Counselling Directory or speak to a qualified counsellor.