It’s pretty much impossible to get around without ever using public transport, and if your son or daughter has a problem with it, it can make life feel seriously confined.
For a child with complex needs you might have to resort to a dedicated taxi or Motability service with support staff, but most people with autism do manage to get to grips with public transport and travel either independently or with help from parents or professionals.
If you’re not sure you’re ready for that yet, though, how do you get there?
Why is it so difficult?
When you add it all up, a ‘journey’ isn’t actually a single action: it’s a complex set of manoeuvres which involve dealing with people, information and changes – all of which can be a lot to manage when you have autism. It’s not surprising that confusion, stress and occasional meltdowns can occur.
What particular challenges can complicate public transport for someone with autism? Let’s look at them one at a time.
Social interaction and communication
For a child with autism, communicating with people can be difficult even if those people are loved and familiar; when they’re unknown, unpredictable and potentially unsympathetic, they can become positively scary.
Though the people you encounter might actually be quite nice, a child with autism may communicate in ways that the average commuter doesn’t understand such as using a picture system or sign language. Even if your son or daughter does have some verbal skills, the rhythm of conversation can be difficult and approaching strangers might feel too intimidating to try.
All in all, a kid with autism may feel pretty isolated out in public.
Flexibility of imagination
Most children can adapt if something changes unexpectedly, and find it fairly easy to apply general rules from specific instances. For a boy or girl with autism, though, it’s not so easy. If a train is delayed or a bus goes on diversion, that might feel less like a minor inconvenience and more like a slide into frightening chaos.
Kids with autism can also get fixed on an overly-narrow mental image of a bus or train: as far as they’re concerned, the right bus looks like this, and if the company changes the logo or plasters some colourful ads all over the sides, your son or daughter might be determined that this is the wrong bus and they’re not getting on it.
Finally, there’s the issue of safety, and this is a big one. People with autism often have trouble using their imaginations – not just in the ‘making up stories’ sense, but in the ability to predict what might happen next. When you can’t predict what’ll happen next, you don’t have a sense of danger: the idea that jumping off a moving vehicle might injure you may simply not occur to your son or daughter.
Autism can bring with it a lot of uncomfortable sensitivities. It’s quite common (though not universal) for a boy or girl with autism to be overwhelmed by certain sounds, sights or smells – and of course, public transport involves a whole host of noisy, bustling, highly stimulating places.
Tannoy announcements, buzzers and bells, the creak and rattle of an engine, the judder and vibration of an old vehicle, the slamming and sliding of doors, the smell of fuel and exhaust, the glow of schedule boards: these can either be mesmerising or horrifying to a traveller with autism. Either brings its own problems: a horrified kid suffers great distress, and a mesmerised kid might have a tantrum if you try to keep them moving.
To add to the difficulties, some people with autism (though not all) are uncomfortable touching or being too close to other people. In an empty carriage that’s one thing, but during rush hour, it’s a serious ordeal: being hot and crammed together with a lot of people can feel truly awful.
Obsessive or inflexible behaviours
It’s quite common for people with autism to have trouble doing what’s known as ‘transitioning’ – which simply means moving from one activity or environment to another. You may know it’s time to get off, but if your son or daughter has settled down, he or she might not be so keen to move, or able to move quick enough to get off before the train slams the doors and carries you past your destination.
Children with autism can also bond to experiences and find it hard to vary the pattern ever after. If your son or daughter always has to sit in the exact same seat, busy times can prove difficult.
Planning, organising and prioritising
To make a safe and successful journey, you need to plan what you’re going to do and do it safely – but for a child who has trouble organising their thoughts, limited ability to predict the consequences of their actions and perhaps even some problems understanding the basic concept of time, that’s no small ask.
Arriving on time or waiting patiently for the bus or train – especially if there’s a longish wait – can prove very stressful for everyone involved.
What can you do about it?
You can’t sit at home for ever: both you and your son or daughter will quickly develop cabin fever, and you’ll miss out on trips and experiences that actually stand to enrich your child’s life and maybe even help him or her feel more confident. It’s hardly surprising that parents feel daunted, so, how can you deal with the challenges?
Get your planning and timing as accurate as you can. There are downloadable apps to track where your bus or train has got to, and the Transport for London website has a journey planner that lets you see changes and walking distances. Go in as prepared as you can so your son or daughter has the comfort of predictability and you can give your full attention to caring for them.
Look into a Freedom pass. This lets your son or daughter touch in and out without having to worry about money, which can save a lot of complications.
For hearing sensitivities, your new best friend is a pair of noise-cancelling headphones. Your son or daughter might like to play distracting music, but you can also buy straightforward ear defenders. These are simply noise mufflers: you put them on, and while they don’t entirely exclude noise, they can cut it down to manageable levels, as well as giving a comforting sense of being protected.
If there are certain journeys that just have to be done, such as a school run or trip to a favourite place, look into a travel trainer or mentor. If your child is old enough and can follow instructions reasonably well, these professionals can help them learn specific routes: it’s not a solution to everything, but it can make certain regular trips a lot easier.
Be aware of crowds. You probably can’t steer clear of busy times every day for the rest of your life, but if you’re planning a weekend trip or scheduling an appointment, leaving an hour later or earlier to avoid the rush could save everybody
Use visual support. It could be that your son or daughter is frightened because they’re confused; if you show pictures of the journey step-by-step, especially if it’s complicated it might help. Back it up up with lots of reassurance and praise (‘Number twelve bus. Then get off – good boy! Then walk to the station. It’s all okay.’)
A tip, though: check transport websites in advance before you commit to anything: if you explain the trip and then find you have to change your plans, it’s best to have a way to explain the change of plans.
Use incentives. If there’s a difficult route that can’t be avoided, figure out what would be a really motivating reward for your son or daughter and use that. Tailor the speed of the reward to your child’s attention span: if they’re young, make it pretty much immediate. Show it to them before you start so they have a clear visual message.
Make sure it’s something portable, and preferably something with its own built-in time limit. If you can find something that works to encourage good behaviour, you can gradually build up a set of good habits that become the foundation of some general rules.
Sometimes tantrums are the problem, and along with this judgement from fellow-travellers (even when you know that your son or daughter is really doing their best to behave nicely). For these situations you may want to consider getting some autism awareness cards.
The National Autistic Society has some standard ones you can order; if you’d prefer something a little more personal, look into websites and photo shops that do business cards.
You just need a simple message, for instance: ‘This is so-and-so, who is coping with autism. Autism is a developmental disability that makes certain ordinary situations difficult to manage. If he/she seems to be acting inappropriately, please bear with us and we’ll do our best.’ You may or may not need to use them, but it can be reassuring to know you’ve got the option.
Public transport combines some of the most stressful aspects of parenting a child with autism: your child’s sensory and social struggles and an intense and high-pressure environment. On the other hand, it is something you can plan fairly accurately – and if you can get the hang of it, then a lot more world opens up before you.
Be as precise as you can in trying to work out exactly what’s causing the difficulties, tackle them one at a time, and remind yourself that children with autism learn a lot from precedent: any successful journey is an education in how to do it next time.
Brent Local Authority in London has produced this helpful guide to being out and about in London
For families in London, Transport for All may be able to help with information about travel mentoring
NHS Choices has a helpful section on autism and public transport.