Smashing the boundaries of autism

Trying new things improves confidence and provides a greater sense of wellbeing but upsetting the status quo can be terrifying for families of people with ASD and we find ourselves questioning if it will be too stressful for our loved one and do more harm than good.

As a mum to 19-year-old Lynden, who has autism and severe learning disabilities, I was conscious that while we'd successfully navigated the dreaded 'transition' period (when he became an adult and left school), his world appeared to be getting smaller.

As well as dealing with the changes associated with this transition period, we also relocated from Essex to Leicestershire. Both of these changes made Lynden retreat further into his comfortable bubble of interacting only with technology and he began to reject some of the community-based activities that he'd always loved. I began to wonder if we'd reached the limit of his development and whether it was time to accept things as they were.

Our saving grace was a long-promised trip to New York. Lynden has often talked about New York as it features in so many of his favourite films. He was desperate to see the Statue of Liberty, the Empire State Building, and a 'yellow car'! I booked to take him for his 18th birthday back in June 2020, but unsurprisingly the Covid lockdown scuppered that, and then the second attempt to take him in July this year was thwarted when I went down with Covid two days before departure.

At this point, it's only fair to share that I was TERRIFIED about the trip anyway, it was never a decision I took lightly, and it would have been easy to accept that karma had intervened, and it just wasn't meant to be. However, I had this nagging feeling that we had to give it a go for Lynden's sake, and I'd never forgive myself if I chickened out, so we re-booked for December 2022.

Why was I so scared?

Those less familiar with autism may be questioning what it was it that frightened me. And those of you with personal experience, will know that the long flight was a significant concern! Lynden had flown before, but not since before the coronavirus pandemic, and only for a maximum of four hours. I knew that once those doors were locked, we would be stuck in a giant metal tube for eight hours with no escape if Lynden had a meltdown. Then there were all the questions about whether he would cope with the noise and crowds of Manhattan, the five-hour time difference, unfamiliar food and drink, and the massive change in his surroundings and routine.

How did I mitigate the risks?

Firstly, motivation is key to pushing boundaries. This applies to any new venture, big or small; if your loved one is motivated, there is a much greater chance of success, so it is crucial to choose challenges that will interest them as well as expand their horizons.

The rest is down to planning, planning, and more planning - and a fair wind!

Our most considerable risk in terms of triggers of a meltdown was having problems with technology or a crying baby. Lynden's mobile phone (which he mainly uses to stream YouTube videos) is his comfort blanket, and as much as I loathe his obsession with it at times, I knew he'd need it to cope with this trip. So, I organised a data-only SIM card that would work in the United States. I purchased extra battery packs so we never ran out of power and downloaded videos to watch on the flight. We packed noise-isolating headphones and ear defenders to cope with any noise he'd find distressing.

I also contacted United Airlines to ensure that we'd get special assistance through the airport should we need it and to request seats behind the bulkhead so that we couldn't upset anyone sitting in front of us with our fidgeting! Lynden wore an autism lanyard to alert people that we needed a bit of patience and understanding. I have to say that the United Airlines staff were super and did everything they could to make the flight easier for us.

While it is true that autistic people can find change stressful, it is unexpected change that tends to pose the biggest challenge. I kept Lynden in the loop with the itinerary and used google images to show him what we'd be doing each day, which eased any uncertainty and anxiety about what was coming next. Some may also find that picture timetables work well for them.

Perhaps one of my most important decisions was who to invite along with us. I couldn't have made the trip alone with Lynden; I needed a companion who 'gets' him, to have extra eyes and hands to keep him safe, and to support me and keep me brave! We took a close family friend; she was terrific and never slow to get us the special treatment we needed to jump lengthy queues – there surely must be some advantages to caring for someone with autism!

Was it worth all the planning?

Absolutely! The trip was an unmitigated success; every time I looked at Lynden, he was beaming. Not only did he love the experience, but it pushed so many boundaries. He coped amazingly with everything I'd feared; he ate new foods, drank new drinks, and travelled on planes, trains, automobiles, and boats. He coped with the madness of Manhattan and dared to scale the tallest landmarks, despite his fear of heights.

Most importantly of all, he looked up from his technology! His eyes were glued to the NYC skyline and permanently scouring for his beloved Empire State Building. On seeing the Statue of Liberty, he pointed at it and told us what it was, which may seem unworthy of comment, but people with autism don't always point out or share interest, so for us, it was huge.

Since returning from New York I’ve noticed that the trip has made us more determined to try new things at home too. We are not so hung up on ensuring specific types and brands of food and drink are available, and Lynden is more amenable to alternatives. He is also more accepting of busy, noisy environments without instantly reaching for his ear defenders. In fact, we have just enjoyed our most sociable Christmas yet, with Lynden being very happy to be amongst us and even being the centre of attention at times! I am continuing to encourage him to participate in pursuits that don’t involve technology and was delighted when he willingly played a simple board game on Christmas Day, for much longer than I would usually expect.

What are my main takeaways from the experience?

• Timing is everything; something that doesn't work once can be a success years later.
• If you are taking on a challenge, then make sure it is motivating for your loved one.
• Assess the risks associated with the challenge and plan for it….and have a backup plan too!
• If things don't go to plan, try again in different settings or environments and with different people supporting.
• Choose the people that support you and your loved one to rise to a new challenge carefully; they can make all the difference.
• Don't be afraid to flag the condition that makes your life more challenging and ask for special treatment.
• Be proud of yourself for every little win. It takes a huge effort to get those wins, and in doing so, you're making a massive difference in the life of the person you love.

The purpose of this blog is not to suggest for one minute that you should or could take your autistic person to New York! It's to draw parallels with any single challenge you and your loved one would like to take on, whether it's a meal out with friends, a first trip to the cinema, or visiting family in their homes. I hope that sharing our experience and the techniques we used to make it a success will also help you smash those boundaries.

Caring for a loved one with autism and/or learning disabilities can be challenging and isolating. At ECL, we aim to support you and your loved one so that you feel less alone. If you think you and your loved one could benefit from additional expert support, we are here and ready to listen.