My good friend over at The Silent Wave responded to a twitter request for the hashtag #autismis with this great post and I wanted to add my voice too because autism is a widely misunderstood condition that really deserves not to be.
The criteria for an autism diagnosis is complex because it affects us, as individuals, in profound and unique ways. And yet I have noticed that people are reluctant to ask autistics how they are personally affected. Maybe out of lack of knowledge, maybe out of embarrassment, maybe because they are wary of being asked for support or maybe because they just don’t know the questions to ask. I don’t know. But as being misunderstood can be one of the most distressing aspects of being autistic I’d be ever so grateful if more people would put any preconceptions to the side and ask questions.
See if this post helps for you to get the conversation started!
For me personally – Autism is…
… having had to study reading body language, tone of voice and facial expressions as a kid by watching others, figuring it out and practising in front of a mirror. Still misinterpreting the subtleties. Being gullible. Assuming that someone being sad or angry is my fault and getting highly stressed at not being able to resolve that. Being completely clueless as to someone’s intentions towards me. I honestly find it almost impossible to know if someone wants to be friends with me, can’t stand me, wants to end a conversation or is flirting with me. This can result in crippling paranoia.
…not undertaking anything (parenting, making health/lifestyle changes) without thoroughly researching it first but being unable to learn, research or revise anything that doesn’t hold my complete attention. I read six books on parenting babies before the birth of my first but didn’t read three of the four set texts for my Literature A level; and while I might spend months reading obsessively on, say, gut health I didn’t revise at all for my undergraduate finals.
… obsessively cleaning or tidying a clothes drawer / under the bed / the bathroom cupboard half an hour before a guest turns up while panicking about the messy pile of washing up / living room in disarray / floor in need of vacuuming.
… crying at sappy songs, Disney movies and happy endings in books. Not being able to watch the news or see certain films because of the inevitable nightmares that may still haunt me months later.
… not being able to remember a basic sequence of verbal instructions, a phone number, someone’s birthday, or even memorise a simple musical phrase (I have a music degree). Often speaking or writing complete gibberish because I can’t access the words or put them in the right order. If I have to try and push through this state for an extended time or under stress I may not be able to speak at all.
…walking into walls, missing my mouth with a glass, tripping up, mis-estimating how quickly a car is moving towards me (I’ve been in several road accidents and so have not learned to drive), not knowing how physically close I am to someone, being unable to throw or catch a ball.
…being caused physical pain by the smell of strong perfumes, peoples breath, sweaty dogs, mould, washing powder, fabric conditioner and air “fresheners.”
…being thoroughly nauseated by stickiness, oxidising fruit, other people’s or animals saliva.
…being unable to function at all in busy, noisy, brightly lit places such as department stores or even some museums. I become quickly overwhelmed; unable to do much but find somewhere to sit and focus on trying to breathe and not be sick.
…not being able to distinguish between concurrent conversations in a room. I guess that for most people it’s similar to being in a very noisy and echoing indoor swimming pool or gym hall.
…finding all social transaction exhausting. I want to be able to do it but every aspect of it is tiring. I’d like to spend time with friends, go to parties, go out spontaneously or even have an easy conversation in the street but all of these often cause a tailspin of anxiety due to the communication issues as mentioned above and are compounded by changes of plan, lateness and the potential addition of other people in the mix. A four hour shift at my pharmacy job leaves me in the state most people are from an eight to ten hour shift.
… having behaviours that can seem childish. Jumping up and down when excited, doing a happy dance, hugging people enthusiastically, running away under stress. And crying. Always crying!
…being misunderstood and talked down to all the damn time. I think I know why. I ask a lot of questions because I like to be sure of things, and I have a perplexed expression when I’m listening to the answer because my brain is a) filtering out other distractions b) figuring out the speaker’s facial expressions and c) jumping around making multiple connections to other knowledge or ideas I have. But I have a really high IQ. And a wide knowledge base. So it’s really frustrating when someone dumbs stuff down for me, doesn’t answer the question I asked, gives me an opinion rather than fact or just can’t be bothered to elaborate.
…being great at acting for short periods of time. Because it’s easier to smile and tell people you are fine than it is to explain all of the above all the time! And because I don’t know if you have the time or emotional energy to take it on board either. And because the more stressed I am, the less I’m going to be able to find the words to communicate how I’m feeling anyway. So, yep, I’m Fine Thanks!
If you’ve made it reading all the way here – Thank You! You are a most awesome human being and if I was with you I might be jumping up and down and hugging you right now!