Travelling With Autistic Children Who Have Epilepsy: A Guide to Safe Family Travel
- 5 days ago
- 9 min read
Updated: 3 days ago
Why an epilepsy / autism diagnosis shouldn't steal your family's travel dreams
When your child has a dual diagnosis of additional needs and a medical condition, travelling can feel completely out of reach. It’s easy to convince yourself that it’s all too difficult, and simpler just to stay at home.
Sometimes, managing the autism feels like the easy bit. I know—I’ve been there.
Our eldest son has childhood epilepsy syndrome, and until the age of seven, he was also anaphylactic to milk, eggs, peanuts, and sesame.
Navigating family life with a child who has severe allergies and carrying two EpiPens at all times was exhausting. The daytime vigilance was off the charts, and the night-time fear of nocturnal seizures was intense.
An epilepsy diagnosis introduces a whole new layer of worry that can make even a simple day out feel daunting. However, it doesn't mean you can't travel by air or explore the world.
As our consultant reassured us, an epilepsy diagnosis itself shouldn't stop your family from having new adventures. With the right preparation, you can plan a calm travel experience that is as safe as possible.
If the worst does happen and your child has a breakthrough seizure abroad, you simply do exactly what you would do if you were at home—as terrifying as that sounds.
Essential Preparation for Flying with a Child with Epilepsy
Before you go, the Epilepsy Society advise that you check with the airline company you’ll be traveling with about access to medical services.
Most cabin crew are trained in advanced first aid which includes how to cope if a passenger experiences a seizure on board but if you are worried or are planning a long haul flight you should definitely check in with them first.
Pre planning is key:
It is important to consider what the primary triggers for your child's seizures are. Are they triggered by tiredness, dehydration, excitement, fever, anxiety or a build up of multiple factors.
It is important to put a plan in place to reduce these potential triggers as much as possible during the travelling period, and throughout the trip is possible.
With sleep (or lack of) a trigger for us, we make sure to book flight times that allow us to follow our bedtime routine as best as possible, including aiming for 10 hours sleep each night. Melatonin can be very helpful for this when travelling so check with your consultant or GP if this is an option that is open to your child.
Travel Vaccines and Anti-Malaria Medication Safeguards
While most vaccines are safe for people with epilepsy, some anti-malaria medicines should be avoided. Public Health England has published the following advice on anti-malaria medicine for people with epilepsy:
❌ Chloroquine: Unsuitable for people with epilepsy.
❌ Mefloquine: Unsuitable for people with epilepsy.
✅ Atovaquone/proguanil: Can be used safely by people with epilepsy.
⚠️ Doxycycline: Can be used, but its effectiveness may be reduced by specific anti-seizure medications like phenytoin, carbamazepine, or barbiturates. Consult your doctor regarding a potential dose adjustment.
You can find more information about travel vaccinations and anti–malaria medicine on the NHS website.
Our Experience: Handling a Breakthrough Seizure in Sicily
Every epilepsy parent worries about their child having a breakthrough seizure, particularly if they are abroad, and unfortunately this did happen to us on a week trip to Sicily.
It was as scary as you might expect, but we got through it as a family - these are the actions and decisions that helped us cope at the time.
The 4 things we did that helped us to cope when our son had a breakthrough seizure in Sicily
1. Know Your Address 📍:
It sounds obvious, but make sure to write your accommodation address on physical paper and keep it in an easy-to-reach spot. If you have to call an ambulance in the middle of the night, you can read it instantly without scrambling to unlock your phone.
In Sicily: We had made a point of writing down the address of our accommodation on some paper and had kept it to hand in an easy to reach place. When we had to call for an ambulance in the early hours of the morning, at least we were confident we were able to give them exactly the right location.
2. Memorize the Local Ambulance Code 📞:
Look up the international dialling code for your destination before you fly. In Europe, for example dialing 112 connects you to English-speaking operators who can route local emergency services. Each country also has its own direct dial for an ambulance, but I didn't know what it was for Sicily. Now I always check this for each country too.
In Sicily: Before we left England I had looked up the international dialling code for an ambulance in Europe - and was able to recall this in the moment of the seizure, for which I was grateful. This meant that I was able to reach an operator that spoke passable English and could understand the situation we were in.
3. Agree a Designated Medicine Spot 🎒:
The second you unpack at your destination, choose one fixed, obvious spot for your child's emergency medicine bag. Make it a rule that it goes back into that exact spot every evening, and ensure everyone know where it is.
In Sicily: On arrival we had found a place in the house for our son's emergency medicine bag and had made sure we put it back there at the end of each day. Thankfully this meant when the emergency occurred there was no scrabbling around trying to find it and we had immediate access to his emergency meds.
4. Consider Epilepsy-Specific Travel Insurance 🏥:
For full piece of mind take out specialized travel insurance that explicitly covers pre-existing epilepsy and seizures abroad.
In Sicily: For this trip we had taken out specialist travel insurance cover that explicitly included epilepsy and seizures abroad. While this cost us more, at least we knew that our bills would be covered. At no time was I worried about the potential bill from the ambulance service or hospital department.
General Note: It pays to investigate potential medical costs for your individual country in advance. As it happened, at the time of our trip to Sicily and Italy, emergency care (including transport by ambulance) was free for all children, including foreign visitors. We never received a bill. However a friend whose child had a seizure while on holiday in France faced a hospital bill that ran into thousands of pounds (thankfully covered by their travel insurance).
Did You Know You Can Pre-book Airport and Airline Special Assistance For Epilepsy?
Increase your peace of mind by booking special assistance for your journey, it is available for adults and children with disabilities including autism and epilepsy.
We nearly always do this, and on the Sicily trip it was particularly helpful. Our son was still feeling very unwell when it was time to fly home, and we were grateful for the special assistance offered by the team at Catania Airport. The use of the wheelchair / transport buggy in both the Sicilian and London airports was a real lifesaver.
Hidden Disability Sunflower Lanyards for Epilepsy
We also recommend either you or your child wearing one of the hidden disability sunflower lanyards while travelling through the airport. They are designed to let other people know your child has a hidden disability and you / they may need more help, support, or time to process a situation.
The lanyards are internationally accepted and recognized by service and security staff across most travel and tourist settings.
You can either ask for a free lanyard from the special assistance desks in most airports (availability varies), or you can buy them in advance from the Official Hidden Disabilities Store on Amazon*
Introducing your child to the lanyard before you begin your journey, helps build it into your pre-journey planning and visual stories. We found it also gave our kids the valuable opportunity to wear it for the first time when they felt relaxed and comfortable.
For more information on booking special assistance for your flight and the different ways it can help make your journey easier visit our dedicated resources:
Six Practical Tips for Managing Epilepsy Gear & Flight Logistics
📋Follow these six top tips for hassle and stress free epilepsy travel:
1. Split Your Medication Supplies 🎒: Always keep your child's core epilepsy medication in your cabin hand luggage, safely inside its original pharmacy packaging with a copy of the prescription. For absolute peace of mind, pack a secondary "backup supply" in your hold luggage just in case your hand bag is lost or misplaced.
Remember: Keep the medicine in its original packaging as the security staff will ask to see this after the bag comes out of the scanner. The name label on the box must match the child's passport and name on your letter from the GP or prescription.
2. Think about Temperature Control ❄️: If your child's specific anti-seizure medication is sensitive to heat, don't risk leaving it loose in a warm travel bag. Invest in a small insulated pouch, a thermos flask, or a compact cool bag with a travel ice pack to keep it at a safe temperature throughout the journey. Check with your pharmacist for advice with specific medications
3. Look into wearable Medical ID 🆔: Consider getting your child an epilepsy identity bracelet, medical alert necklace, or a free epilepsy ID card. If an unexpected emergency happens in a busy airport or terminal, this instantly gives first responders or bystanders the vital information they need.
Epilepsy Action has details of companies that supply identity jewellery. You can order an epilepsy ID card free of charge by contacting Epilepsy Action.
4. Alert the Cabin Crew ✈️: If your child experiences frequent breakthrough seizures, flag this with the airline during your booking process or mention it directly to the lead cabin crew member as you board the aircraft. This ensures the staff on your flight are fully aware and ready to assist calmly if a seizure occurs mid-flight.
5. Navigating VNS Devices at Security 🛡️: If your child has a Vagus Nerve Stimulation (VNS) implant, airport scanners are generally safe, but you shouldn't linger directly inside the metal detector screens. Keep your VNS Therapy ID card handy to show the security staff. You can request a manual pat-down check instead of passing through the body scanner, and ask that they avoid passing a handheld scanning wand directly over the chest device.
6. Factor in Time Zone Changes on Routine Timings ⏰: It is incredibly easy to lose track of your routine while navigating flights or switching time zones. Forgetting a single dose can impact your child's seizure threshold and make a seizure more likely. Set a dedicated recurring alarm on your phone to ensure medications are given at the exact intervals your consultant recommended.
What if I need to get my child more epilepsy medication when we are abroad?
Accidents happen, things go missing. If you run out of your prescription medicine while you’re away, or urgently needs more supplies contact your travel insurance company.
They may be able to help get your prescription replaced. If they cannot help, speak to a pharmacist in the country you’re visiting.
You may need to pay for a prescription from a local doctor. If you have a Government Health Insurance Care (GHIC) and are in one of the countries where it is valid, you should pay the same as people who live there. Make sure your prescription is from a state-approved doctor.
Final Thoughts: Finding the Courage to Travel as a Family with Complex Needs
The daytime vigilance of keeping a child with severe allergies safe is off the charts, while the night time fear of nocturnal seizures is intense. To be honest, we were—and often still are—completely exhausted.
Looking back, it was not until our eldest outgrew his severe milk and egg allergies, and his epilepsy became more well-controlled that we began to feel that the life-changing benefits of exploring the world would finally outweigh the risks.
We started slowly—with just a single night away—and built our confidence from there. Even though we are much braver now, the baseline vigilance and fear never truly goes away.
Do I still plan exhaustively and make endless lists? Yes.
Am I over-the-top checking and rechecking hospital locations and medicine supplies? Yes.
Have we ever had an emergency abroad? Yes, and it was awful. But we got through it as a family.
Do I regret a single one of our adventures or holidays? No, not for a second.
My deepest hope is that sharing our story alongside this practical information, helps gives you the confidence and bravery to step outside your own front door too.
Happy travels,
Layla x
Recommended Travel Resources & Helplines for Epilepsy and Autism
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📞 Helplines & Travel Support
The Epilepsy Society Helpline: If you are feeling overwhelmed, the Epilepsy Society Confidential Helpline offers dedicated emotional support, guidance, and a safe space to talk through your travel anxieties with an expert team.
The Epilepsy Action Website has a range of helpful resources to support families Travelling Abroad with Epilepsy.
📑 Free Printable Epilepsy Travel Guides & Factsheets
Young Epilepsy PDF Guide: Download this highly detailed checklist, Travelling with a Child with Epilepsy, which serves as a brilliant companion blueprint for family holidays.
Epilepsy Society Factsheet: Read the official Epilepsy Society Travel and Holidays Factsheet for deep-dive clinical advice on managing seizures across different global time zones.
National Autistic Society Guide: Explore their comprehensive hub for General Advice on Epilepsy and Autism, specifically addressing how sensory triggers can overlap with medical conditions.
🛡️Safety IDs & Medication Trackers
Free Epilepsy ID Card: Order a completely free, pocket-sized Epilepsy Action Identity Card. It features an intuitive layout with dedicated space to write out your child's emergency contact details and rescue medication instructions.
Travel Health Pro Tracker: Double-check your holiday destination's strict medication import laws and vaccine interactions using the government-backed Travel Health Pro Country Guide.
The Epilepsy Space Platform: Share the Epilepsy Space Interactive Hub with older children or teens to help them naturally understand and track their own seizure boundaries while away from home.
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