Epilepsy can often be accompanied by other conditions, and one of those is autism. There are around 630,000 people with epilepsy in the UK, and around 700,000 autistic people. Research suggests that the two conditions could share a similar cause. The National Institute for Health and Care Excellence (NICE) says that epilepsy is more common in autistic people, affecting 20-30%.
One person living with both epilepsy and autism is Claudia Hart, 26, from Richmond, Surrey.
Claudia was diagnosed with epilepsy at just two years old. Her parents noticed that she was making “jerky movements” and noises in her sleep. They took her to the hospital, where she was monitored using overnight video telemetry, but nothing was picked up. When they got home, Claudia started convulsing again and her parents took her to A&E.
“When we were seen, the doctor in A&E said that I had epilepsy. I was diagnosed as having complex partial seizures (now called focal impaired awareness seizures).”
Her journey with epilepsy has been really tough. She had side effects from the combination of medications she was prescribed, especially when it came to her mental wellbeing. She also faced ignorance around epilepsy from friends and strangers.
“Whenever I have had seizures in public, I have often been ridiculed, either by people who I thought were friends or the general public, but most often so-called friends, as they find the noises I make funny and think that I am drunk due to the movements I make,” Claudia recalls.
It has also affected her in social situations. As she cannot drink alcohol, people have suggested she should ‘lighten up.’
As well as dealing with ridicule, Claudia has also had to face people’s fears. She explains: “Sometimes when people see us have seizures, they get scared of us. For me, that is like saying you are scared of me as a person just because I have seizures.
“I can understand why people might be nervous of seizures themselves if they haven’t seen them before. But there is a big difference between that and saying you are scared of us, as we are not our epilepsy.”
Autism
While Claudia was at school, she was given a diagnosis of autism. She said:
“Ever since my school days, I have always worried about what people think of me as I have always been judged for being quiet, which isn’t helpful for me as it makes me feel pressure to be somebody I am not. I have never found it easy, even as an adult, to make friends or keep them, although that has got better and easier over time.
“Keeping friends has been harder, as the majority of people do not understand how autistic people operate. It can still be hard for me socially due to the myths and stigma that surround autism and people misunderstanding me. I did have friends at university, but those friends just drifted apart from me as they live so far away.
“The combination of epilepsy and autism makes social situations naturally harder for me anyway, which is why I have been much more selective of who my friends are as I have got older. People have taken advantage of me for both epilepsy and autism. Autism because they think I will not pick up on things that they can, and epilepsy because when I am unconscious, they think it is okay to video me having a seizure as I will never find out. Neither of these things are true or okay.”
More information on epilepsy and autism
- NICE Clinical Knowledge Summaries says that there is an increased incidence of epilepsy (20-30%) in people with autism spectrum disorder. This is compared to around 1% in the general population.
- The National Autistic Society says that people with autism who also have intellectual disability (ID) have a higher chance of having epilepsy (around 20%). In people with autism who have severe ID, the risk of developing epilepsy could be as high as 40%.
- This does not mean that having autism can cause epilepsy. It is suggested that having both conditions is likely due to the fact that similar genetic and environmental factors can cause both conditions to develop.
- We don’t know exactly what causes autism, but there are multiple factors associated, including family history and genetic disorders. Environmental factors include advanced parental age, premature birth, very low birth weight and maternal use of sodium valproate during pregnancy.
- Research has suggested that treatment can be tricky for people with autism and epilepsy, as some ASMs ‘can interfere with mood and behavioural disturbances frequently observed in ASD’.
- Other challenges for people with ASD and epilepsy can be around explaining their experiences, the National Autistic Society says. Signs of oncoming seizures could be missed as being sensory issues to do with someone’s ASD, so understanding the individual is key in supporting them, it adds.
- For more information, visit the National Autistic Society and NICE
When epilepsy and autism collide
Claudia now wants to share her experience about both epilepsy and autism to help others who may be going through similar experiences, and raise awareness of how epilepsy and autism can collide to get the public to understand them more. She said:
“Living with epilepsy and autism is harder than most people think – even if it is just one of them. A lot of what other people take for granted, we do not. Those with epilepsy can’t drive in some cases, always have to think about how travel vaccines and other medications interact with their daily medication, and we get more tired due to our medication. Some also have to be careful with flashing lights and alcohol. Those with autism don’t take anything social for granted. We spend most of each day navigating a social world that isn’t designed for us. So, with that in mind, it would be better for relationships if others cut us some slack sometimes.
“A lot goes hand in hand in terms of autism and epilepsy, but for me the key things are tiredness affecting my ability to socialise and cope on a daily basis, the side effects of my medication (mainly anxiety and depression) making the anxiety due to my autism worse, negative comments that people have said about me, making me go into my shell and not want to talk to anyone, and feeling left out and picked on due to my disabilities, as well as misunderstood.
“Having gone through the experiences I have, both with my epilepsy and autism, it has made me really passionate to help others who also don’t have it so easy in life and share my experiences with others.
“One of the myths about autism is that those on the spectrum do not have empathy. That is far from the case, and indeed, we sometimes feel emotions more strongly than others. Most of the time, we are very empathetic people, due to our life experiences.
“I still have it hard today as sometimes employers don’t take me on because of my disabilities, and I still face barriers. However it is with the support of my parents, my godmother and psychologist that I have got to where I am today. I strongly believe that if we can all support each other within the epilepsy and disability community, then we will form a community where people feel accepted and welcomed.”
Share your story
Do you have experience with epilepsy and autism or another condition? What is it like dealing with more than one condition? We’d love to hear from you. Email press@epilepsy.org.uk to share your story!