Lis Higgs is one of our staff and has shared her experience of going on holiday with their neurodiverse child.
Every time we go away we know it will be a challenge, but a challenge worth taking. Our son is neurodiverse and has a different way of relating to the world. He is diagnosed as having Autistic Spectrum Condition.
We want to have time out as a family but the challenge starts when we mention where we are going – usually Wales or Scotland. Our son is interested in Korea and wants to go there, so we have to spend time explaining why we can’t go there and take the dog with us. He wants to control what is happening, so will re-visit his preference many, many times, just in case we have changed our minds or found a way of making it happen. This can be draining or frustrating, sometimes you just want to shout, ‘No, we cannot go to North Korea on holiday, who does that? What a stupid idea!’ But you take a breath and re-visit the questions with further explanations – introducing pictures of where we are going, and explain what he can do that ties in with his special interests, hoping something will catch his attention and hook him in.
I remember when he was young and we had just visited a National Trust site in Scotland, he was experiencing sensory overload – too many people, too much noise – and was screaming in the carpark, shrieking at the top of his voice. We were trying to bundle him into the car, and a couple who parked next to us started to question us on why he was crying so much, what were we doing, where were we taking him! They made us feel like we were kidnapping him! I was so humiliated and embarrassed. When he was small we used the car as a safe space for down-time when he had melt-downs. What this couple hadn’t seen were the previous days of heightened excitement, reduced sleep because he was running on adrenaline and increased activity. He had literally burned himself out and was running on empty. We left the National Trust site, and fully expecting to be stopped by a police car, I sobbed my heart out. It was so hard, we had done so much to prepare him for that visit and people didn’t seem to see all our hard work and effort. You can feel constantly judged by others, and going on holiday, whilst they have times of incredible memories, they come with the hardest of challenges – breaks to their normal routine, new accommodation, new bed, new place, new food – to name a few!
Going on new walks is always a challenge too, because he doesn’t know how long they are, and this is a problem to someone who likes to know how long everything takes. Now he’s a teenager we can give a rough estimate and an incentive in the form of lunch out or a treat. When he was younger this involved many melt-downs on the way. I remember having just arrived at our destination of the beach – he thought this was the end, but we explained we had to walk back. He just hit the deck and everyone around us was staring. We had no car, no safe place for him to calm down in, he just had to go through it, and so did we. I remember trying to block out people staring and trying to not listen to their comments. Just giving him the time and space to let this happen. When it was all over we went and bought the biggest ice-creams and lots of treats to give us all the energy to get back!
Looking back at my younger self, what advice would I give to navigate these situations more smoothly? I don’t think there is anything else we could have done at the time, but nowadays there is a wealth of resources, apps and technology that has been developed as people are more aware of neurodiversities and making reasonable adjustments.
- In that situation I would have worn a hidden disabilities sunflower lanyard. The lanyard would act as a signal and hopefully receive a more sympathetic response from bystanders. Find them here: https://hiddendisabilitiesstore.com/autistic.html
- You can also purchase a ‘My child is Autistic’ card for 50p, or download one for free here: https://www.autism.org.uk/shop/products/merchandise/alert-card-child
In the heat of the difficult moments you don’t have the time or energy to explain to onlookers what is going on, and why should you? If you are going on holiday I would advise you to check out the resources that are out there, they can really help you keep your boundaries and dignity as a family.
Share on social media
Help us support families today
At Care for the Family we support couples, parents and those who have been bereaved. If you would be able to make a one off donation to support our work, we would be very grateful. Thank you.