Dean Beadle interviews Dr Rohit Shankar, consultant in adult developmental neuropsychiatry at the Cornwall Partnership NHS Foundation Trust. Dr Shankar is also an honorary associate professor at the Exeter Medical School. He frequently works with individuals with a co-occurence of autism and epilepsy. Here he explores the issues that arise from this co-occurence and highlights reasonable adjustments health professionals can make to meet the needs of these individuals.
Autism and epilepsy
"When working with patients with a co-occurence of autism and epilepsy, understanding their autistic needs will have a positive effect on their epilepsy too. A perfect illustration of this was when I worked with a patient with epilepsy who was also on the spectrum and who presented regularly as very drowsy and upset. Lack of sleep is a known trigger for seizures. After some investigative work, we discovered that he was in a room next to a lady with terminal dementia who would make noise throughout the night. This had a massive impact on his sleep as one of his sensory issues was highly sensitive hearing. In this instance we were able to move him further down the corridor and as a result his seizures dropped by 75%.
There are specific types of seizures, which co-relate to some genetic syndromes which are over-represented in people with autism.
The first route of action for anyone being assessed for seizures would be sending them for an EEG and a brain scan. These are often done in large general hospitals, which can provide a significant challenge for people with autism. Individuals on the spectrum can often struggle in new environments and the whole experience can be highly distressing.
In my clinical experience, the following approaches are useful in reducing anxiety for patients on the spectrum:
- Facilitating scans in quieter parts of the day to reduce sensory distractions
- Being upfront and clear in your approach
- Being sensitive to individual needs
- Asking questions at a calm pace to reduce panic
- Not rushing straight in to the topic at the beginning of the appointment
- Giving individuals enough space to communicate their needs by giving them longer appointments
- Having a trained professional in the hospital environment who understands autism and is at hand to assist throughout the hospital journey (such as liaison nurses)
- Person-centred planning
- Communicating in the individual's chosen manner (such as drawing up a social story etc.)
Any strategy that reduces anxiety for these individuals must be explored. I'm currently leading a multi-disciplinary clinical team review for an individual with autism and epilepsy who refuses to leave his room and gets very distressed by any form of change. We have had to invest time to work out what's causing this anxiety and make the reasonable adjustments to make hospital appointments viable for this individual. In his case the prospect of the long car or train journey may have been a major source of his distress and had to be fully unpicked. Thought was given to transporting him via a helicopter. This was possibly the best way to get him from home to hospital and back to minimise his anxiety.
Some individuals find the thought of the EEG scanner with its flashing lights far too overwhelming. In some instances, we may put them under a general anaesthetic and then give them an EEG scan just as they wake up, so that by the time they are fully conscious, the overwhelming experience is already over.
Seizures can be controlled by medication in most cases. Interestingly individuals on the spectrum are far more fastidious with taking their medication than the neuro-typical population. People with autism tend to love routine and structure. Once I have explained to them the benefits of taking the medication and clearly outlined the dosage, taking the medication slots nicely into their daily routines.
Of course with this dependency on routines, unexpected seizures can be a big issue for individuals with autism and epilepsy. In order to restore some routine and security for these individuals we need to empower them to see the difference their epilepsy medication makes in controlling these fits. We also need to work with these individuals to identify triggers and encourage them to communicate those so that we can better control their seizures and restore their familiar routine.
In order to meet the needs of individuals with this co-occurence, there needs to be much more awareness of autism in the medical profession. Autism training is often undertaken for the sake of doing it, but it's not person-centred. To be able to fully meet the needs of people on the spectrum, health professionals need training that highlights the broadness of the spectrum and that every person with autism has differing needs and each individual's autism is unique to him or her.
As time moves forward, I'd like to see more research into autism and its impact on epilepsy and vice versa, especially in areas such as sleep and toilet habits as both of these can impact on epilepsy, especially as people with autism have higher vulnerability for gastrointestinal and sleep disturbances. Both constipation and diarrhoea could interfere with how seizure medication enters the body and, ultimately, how effective that treatment is. Other key areas of research include the effect of medication and side effect profile, communication and genetic influences impacting on co-morbid presentation of autism and epilepsy."
Author: Dean Beadle
Date added: 12 February 2014
Hear more from Dr Rohit Shankar at this year’s National Autistic Society Autism Professionals conference