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Here are 6 things autistic people wish you knew about autism.
1 We don’t cope well with unexpected changes Routine can be important to autistic people to allow them to cope with everyday challenges that for neurotypical people are second nature.
When things change suddenly without warning, it can feel overwhelming for autistic people who need time to process feelings, emotions and events. The National Autistic Society’s new film highlights the impact of unexpected changes can have for some autistic people.
The film’s star, Saskia Lupin tells us what unexpected changes feel like for her. ‘Unexpected changes make me feel anxious, they make me panic, they make me angry but overall I feel confused, like I can’t do anything. ‘When an unexpected change happens, it begins with an internal struggle but then it transforms into something physical. I start pacing, fidgeting and I have an overwhelming feeling like I need to channel the emotion into someone or something.’
However, just being a little more understanding and being patient or helping when you see someone who is distressed can have a big impact on an autistic person. ‘There have been times when members of the public have really helped and it’s given me reassurance to keep going. I have recently been served in the ticket office at my local station by a really kind man. When he saw how anxious I was about my upcoming journey, he took the time to write out a detailed plan of my route and run me through what I would need to do when I changed trains and alternative routes if something went wrong. I can’t explain how much that meant to me.’
2 We might have meltdownsmeltdown is when an autistic person gets overwhelmed by everything around them and may begin to shout, scream, cry or lose control. Georgia Pilkington, a professional rock climber who has overcome her fears of social interaction and sudden changes of plan to embrace her passion, shares her advice for supporting an autistic person having a meltdown: ‘My best advice for helping an autistic person through a meltdown is to be patient. Don’t make them feel like they are being annoying, because they are struggling and they just need compassion and understanding,’ she says. ‘Help them find a quiet place, preferably with fewer people – I personally am not keen on having an audience when I am having a meltdown. ‘Know that they aren’t crying because they are sad or bursting out because they are angry – their brains have been overloaded with all sorts of feelings, events that have happened and emotions and they’re just unable to process them as easily as a neurotypical person can. ‘Also, give them as much time as they need to calm down and come out the other side of it, because feeling under pressure can just prolong the meltdown further,’ she adds. 3 We have social anxiety but that doesn’t mean we don’t want to have friends or go out.
‘Social anxiety is a part of growing up with autism,’ says Bradley Gunn, aka The Sober Raver. ‘Obviously that can make engaging people more complicated than it needs to be. But I have found my passion for music and rave have alleviated the anxiety.
‘I’ve done loads of travelling and dancing at lots of different events and it’s helped my overall confidence – in all parts of my life – increase significantly.’ The Sober Raver has tips for helping autistic people when they are at gigs, night clubs and festivals that come direct from his experience. He says: ‘Just really put yourself out of your comfort zone and express yourself.
It might feel unnerving at first but you’ll get over that barrier and then you will find true happiness and have lots of fun.
‘Regarding those who want to help autistic people, I would say just tell them to forget about what people think and render the environment around them as a different place. Let them go their own path, see how they go and then provide support if needed. ‘But let them feel in control so they can boost their confidence by themselves.’
4 Loud noises and bright lights can be unbearable
Many people on the autism spectrum have difficulty processing everyday sensory information. Any of the senses may be over- or under-sensitive, or both, at different times.
These sensory differences can affect behaviour, and can have a profound effect on a person’s life. It’s called sensory sensitivity. Laura James says: ‘The sensory side of office life can be overwhelming for someone autistic. Bright lights, noisy open-plan workspaces and hot-desking were all a bit much for me.’ Samantha Tomlin, mother to Henry, who is autistic, says his sensory sensitivity makes everyday activities a real challenge. ‘Everything others see as making the shopping experience more enjoyable, Henry struggles with.
Music in shops, different levels of lighting and bright adverts everywhere can trigger his anxiety.’ So what can make this sort of daily challenge better for Henry? ‘I love the National Autistic Society’s Too Much Information campaign and Autism Hour, where they suggest that simply turning down the music and training the retail staff can make all the difference.
‘Preparation and routine is key to keeping calm,’ says Samantha. ‘So, if he knew he was going somewhere that they had made more comfortable for him, it’s less likely his anxiety would be triggered.’
5 We can be highly sensitive to unexpected touch
Autistic people may experience touch differently to neurotypical people. That could be an under-sensitivity to touch – for example, holding others too tight just to feel the pressure, a high pain threshold, self-harm or chewing on inedible objects – or an over-sensitivity, which means a simple touch – particularly an unexpected one – could be uncomfortable and even painful.
It manifests itself in other ways too, such as finding clothes or anything touching hands or feet unbearable or food textures uncomfortable. Henry’s mother Samantha says: ‘Henry’s biggest sensory struggle is that he doesn’t like to be touched.
He spent many years living in fear that he would be bumped into and the anxiety it caused him was very distressing to him and everyone that loves him. ‘For example, simple outings that others would take for granted like walking around the shops or a school corridor would petrify Henry. He used to compare being touched lightly as experiencing a burning sensation.’
There are ways to make this easier for an autistic person. You could help by warning the person if you are about to touch them – always approach them from the front, for instance. You could be extra respectful of their personal space. And remember, if you want to comfort them during a meltdown or moment of stress, that a hug may be painful rather than comforting.
Also, allowing an autistic person to complete an activity they are struggling with themselves can help – eg hair brushing and washing – so that they can do what is comfortable for them may help.
If it is clothing that is triggering the problem, allow that person to wear clothes they are comfortable in, if possible, and make sure there are no seams, tags or labels – perhaps by turning them inside out.
6 We need time to process emotions and information – putting pressure on us will only make it more difficult
Tom Morgan, a rugby player and star of TV’s The Undateables says that his need for processing time has at times stopped him achieving his goals in his sport. ‘It definitely has been a barrier for me,’ he says. ‘Being misunderstood by coaches has been the biggest problem I have experienced – they need to break down training in a way so it’s easier for me and other autistic people to take part; they assume we are just like everyone else and we’re not.’
Sometimes autistic people feel like they’re getting ‘too much information’ and need a few moments to filter through it all. This is called processing time. ‘The main anxiety trigger for me is social interaction and sudden changes of plans – I’m always worried I’m saying the wrong thing or that I’m coming across different and weird,’ says Georgia.