I don’t often feel down about being autistic, and as many of you know, it can also be a real strength. But sometimes, autism presents challenges others don’t face, and there are moments when I honestly wish things were different. I recently had one of those moments.
Limited Support
Having a fantastic support worker has made a huge difference in my life, but their time is understandably limited to scheduled visits. I don’t have 24/7 support, which means I sometimes run into problems they can’t immediately fix. They’re great at helping me prepare for potentially tricky situations, but no matter how much we plan, unexpected things always happen.
An Unexpected Travel Headache
Recently, I found myself dealing with just such a situation. I avoid flying whenever possible, both because it’s incredibly draining and because it’s not ideal for the environment. But a while back, it became necessary. I had several speaking engagements lined up, and flying was the only way to save time and get a little extra rest. Airlines have strict baggage size regulations, and because I was away for several days, I needed to bring quite a bit with me.
My Support Worker Helped Me Pack
My support worker carefully measured my bags, and we decided I should check my cabin bag and take a larger backpack and a small handbag as carry-on – you’re allowed one small bag and one larger one. They did all the packing to ensure everything would fit, and I even learned a few new packing tips! They also made sure my power bank was packed correctly, following SAS’s specific guidelines. I struggle with reading and understanding instructions, so my support worker took care of that for me.
We Covered All the Bases
Then, we talked through everything I needed to do at the airport, security, and on the plane. I hadn’t flown in at least seven years, and I’ve always found flying and airports stressful. It feels like I always accidentally do something wrong. But my support worker was very clear as we went over everything. We agreed I would put the backpack in the overhead compartment and the handbag under my seat when I boarded.
The Backpack Wouldn’t Fit
When I boarded the plane and found my seat, to my horror, the backpack didn’t fit in the overhead compartment! I couldn’t understand how that was possible, since my support worker had measured it so carefully. But it was just too big. I checked other overhead compartments, but they all seemed just as small. I panicked, and to make things worse, I was blocking the aisle for other passengers! I briefly considered getting off the plane and taking the train instead, but then I remembered I’d already checked my baggage, so that wasn’t an option.
A Simple Solution, Eventually
After a while, a fellow passenger noticed I was struggling and wondered why I wasn’t putting my handbag in the overhead compartment and my backpack on my seat. I explained that I wasn’t sure if it was allowed to keep large bags on your lap, and that the backpack definitely wouldn’t fit under the seat. But a man flipped the backpack upside down, and suddenly it fit! I never would have figured that out that quickly. Maybe I could have, if I’d had a long time to think it through – at least fifteen minutes! – but on a plane, everything is so fast-paced during boarding that there’s just no time. You have to think on your feet!
It Was Really Stressful
The fact that someone with autism can struggle to react in unexpected situations is often down to executive dysfunction: the brain has difficulty adjusting and finding new solutions when something unforeseen happens. And my support worker hadn’t been able to anticipate the overhead compartments being so small, so they hadn’t prepared me for that possibility. It was really stressful because I hate getting in other people’s way. I ended up holding everyone up, and it feels like I’m always the only one who doesn’t know what to do. It’s not just a feeling, either – it’s based on reality.
Should Have Taken the Train
Living with a cognitive disability like autism often means navigating a world that doesn’t always understand or accommodate your needs. It also involves a constant balancing act: should I push myself, or is it better to avoid the challenge? I often plan things carefully, especially if I know they’ll disrupt my routine. If I don’t plan thoroughly enough, there can be consequences. In this case, I pushed myself, and it definitely wasn’t worth it. Looking back, I should have taken the train!
The Worry Is Valid
If someone with autism avoids new activities due to fear of failure or doing something wrong, it doesn’t necessarily mean they lack self-confidence! It may be that they’re aware of their difficulties and strengths, and simply know they don’t know how to do certain things. The fear and anxiety can be perfectly justified! I’ve now decided that, for any future trips – if I absolutely have to fly again – I’ll apply for special assistance from SAS for passengers with disabilities. People sometimes struggle to understand why you might need support even if you look “normal,” but not all disabilities are visible!
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