Trying to understand what others mean and how to behave can be exhausting and stressful for autistic people, causing many to end up feeling excluded and isolated.
Fay and Bowie
I have quite bad anxiety about most things in life anyway, but my anxiety is definitely worse when I’m in a social situation. My social anxiety can occur when I’m in a situation and I’m not even talking. I could just be sat in a restaurant with the family and feel anxious about the people sat around me on different tables.
I will also feel socially anxious when I don’t even have to look at the person I’m talking to. So, for instance, I will be on the phone to someone at work and I’ll stumble over my words or speak very very quickly. It’s the same at McDonalds drive thru – I’ll rehearse over and over again what I have to say in my head, but when it comes down to talking to the machine I will panic and get my words wrong.
When I feel anxious I tend to feel quite sick which can then lead to more anxiety.
My heart starts beating really fast, I get really hot, my hands shake and I get a nervous twitch that causes my head to twitch.
After fighting with these feelings that my anxiety produces, I feel really tired and all I want to do is go to bed and watch some Netflix.
When I'm in a social situation and I feel uncomfortable and anxious, I definitely act differently to normal. I always say there are like two different Izzys, and if my friends in my college class see me when I’m at work or in a social situation where I am very anxious, they would think, "Who is this?", because I feel like I act completely differently.
When I'm anxious and struggling to get my words out or saying the wrong thing, I find people get impatient and ask the same question over and over again. That makes it even harder to get my words out, and answer their question, even if I know what I want to say. Also when I'm on a train or in a busy shop with my family and I get anxious, I may swear or sigh quite loudly and this can encourage strangers to look and judge me which will make the anxiety worse.
When I'm in a social situation with people who know me well and I mess up my words or I look a little tense and stressed, they often take the mick or say something that we can laugh at. This will make the situation less stressful and make me feel better, as it will take my mind of the environment or situation I am in slightly.
To help with my social anxiety, people need to give me time to breathe.
Give me time to answer a question, and if I do get it wrong or they don’t understand because I’ve spoken to quickly, maybe rather than repeating the same question, ask it in a different way that is easier for me to answer.
If people that I don’t know see me or recognize me getting anxious they need to leave me alone and to not make a big deal out of it and just let me have some time to think.
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People, environmental noise, crowded places and having to do something that’s outside my usual routine… these things all make me feel socially anxious.
For example, every time I have to visit the Job Centre. Just walking into a room where there are numerous distractions is difficult, and sometimes I can’t concentrate on what’s being said to me due to a conversation happening at the next desk. The lighting tends to be very bright, too. I never know who will be there, I can’t even guarantee seeing the same worker each time because sometimes you have to see someone new even when your regular worker is clearly in the building.
I felt like a criminal as the receptionist ordered me out.
Generally I feel like I’m under pressure, being observed. I become anxious, then short-tempered and sometimes verbally aggressive. The worst outcome is that I’ll have a meltdown, which does nobody any good.
I’ve been passing as ‘normal’ for most of my life, despite the high personal cost. I respond to situations differently from most people who aren’t autistic. Sometimes I guess my behaviour can be inconvenient, be misread, annoying or shocking to others. There are so many ways I differ from people I know; some are very slight differences, other are fairly major and have a big impact on me and others.
How can people help?
A couple of months ago a friend helped a great deal. We went for a walk in a small seaside town well known to us both, it was winter so few people were around and I felt quite safe.
But after a while I started to get anxious because the wind was blowing pretty fiercely (noise as a stressor) and I couldn’t find my purse, then my mobile, in my bag. She was brilliant, so calm.
She gave me her full attention, asked if she could help, gave me time to look for my things, and calmed me down with well-chosen words.
She understood my panic, my anxiety. She wasn’t embarrassed by the little noises and grunts I make when I am anxious, or impatient that I kept forgetting things. She has a daughter with disabilities and said that being out with me was very much like being out with her daughter.
There’s so much room for improvement in the way the public react to autistic people. Whenever I meet someone who has a family member or friend with autism I feel at ease because it is immediately apparent that they understand, and behave in a way that shows they do.
When someone genuinely understands it makes life so much easier, and anxiety levels are more easily managed. If only awareness could be raised among people in officialdom it would be a good start.
To help stop social anxiety, I'll be calm and ask if I can help. What will you do for autistic people?
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Finding out my son Bowie could possibly be on the autism spectrum came at a time when I was desperate for answers.
I was a single parent, raising a child who wasn't reaching milestones that other children were hitting. There were no words, barely any eye contact, no social skills, no signs of imaginary play and plenty of flapping and spinning.
I just assumed that I was a bad mother. Being a first time mum, I thought maybe I wasn't doing all I could do to help my child grow.
My mother approached me when Bowie was 2 years old with her concerns. Worried, I quickly contacted my health visitor and got the ball rolling. At 3 years and 3 months old, Bowie was diagnosed with ASD (Autism Spectrum Disorder). Being told that my son may never speak, and that his autism was severe was hard enough, but the discrimination I received on a daily basis was, and is, even harder.
Bowie suffered badly from social anxiety. In public he would hit, punch, bite, kick, and scream when he couldn't cope. This mostly happened on public transport, and that is where I received most of the discrimination. I would be told my child is 'naughty', and that 'he needs a good slap'.
One situation that I physically couldn't cope with led to a breakthrough in how we dealt with reactions to us. My son was obsessed with metal spoons and used to carry two with him wherever he went. One day, we got on the bus and Bowie was being laughed at due to him holding up two metal spoons whilst he was sitting in the buggy. This broke my heart.
So the next day I decided to spin it on its head. As we got on the bus and parked up the buggy, Bowie sat there with his metal spoons – and I pulled out two metal spoons and held them up just like him. Soon enough, people were laughing at me instead of him! But that's ok, because I can take it.
At least now they weren’t laughing at Bowie. I felt like I had won my battle. I was so relieved.
Through my experiences I set up a page on Facebook to raise awareness and educate the general public. I also campaign locally alongside The National Autistic Society. I believe that if myself and others can spread autism awareness, then we can make for a better future for my son and the next generation of autists. I want them to grow up in a world where they are judged by their ability, not their disability.
Fay Hough, 28 years old, Mother of Bowie and parent campaigner/activist.
To help stop the overload, I'll make plans clear, and stick to them. What will you do for autistic people?
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I used to think that it didn't make any sense for me to be autistic and socially anxious. As much as I adore many popular depictions of autistic people (however much I may now fear Scandinavian bridges), they often show people who don’t care what anyone around them thinks, who will speak their mind at any time, who are contented to be in social situations as long as nobody polices their behaviour and interaction.
Social interactions don’t feel like that for me. Often they feel more like a performance. Most of the time they feel like a pretty bad performance.
A pantomime version of The Wizard Of Oz at the Nuneaton Palladium sort of performance. Except unlike our dear friend Christopher Biggins, I’m not trying to be terrible. I just sometimes am.
Or maybe I’m not. Who knows? That’s the nature of anxiety. Any time you have a conversation with me (unless you’re one of my closest friends), I’ll be analysing and examining our chat from every angle. Did I do well? Did I talk too much? Did I not talk enough? Was my anecdote about the man on the Victoria line’s awe-inspiringly fluffy eyebrows really as interesting as I thought it was?
The worst part is that not only will the conversation be analysed; it will be analysed by the most critical judge imaginable. Think of Simon Cowell, Piers Morgan, and the Australian one off Masterchef all rolled into one.
Because when, from a young age, every mistake in every conversation is pointed out to you with a stern look and a disappointed tone, you start to lose confidence in your ability to interact with ‘normal people’.
When every faux pas, every accidental insult, every discussion of the Greater Manchester public transport network that’s bored the hell out of whichever kind soul has hung around long enough to listen, feels like a personal failure, like an irrevocable mark of shame on my record. So no, my anxiety isn’t detached from my autism; it’s fundamentally linked.
Although I will always be autistic, I don’t always have to feel this anxious. A reassuring comment, a laugh, a smile; all these things can help to get rid of those critical voices and replace them with some self-confidence and empowerment.
Every conversation overloads me - it’s really, really tiring. But if other people really understood the effort that goes into each conversation, whether it’s a passing hello by the coffee machine or an emotional rant in the smoking area of a nightclub – then maybe, just maybe, conversations would stop feeling like causes of anxiety, and more like powerful and empowering tools for discovery.
To help stop the overload out with friends, I'll make plans clear, and stick to them. What will you do for autistic people?
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