This is the third year I’ve participated in Autistics Speaking Day. My previous posts are here (2011) and here (2010) and the main website is at http://autisticsspeakingday.blogspot.co.uk/.
Being autistic causes me a lot of difficulties, but most of them aren’t related to being autistic itself; instead, they’re because other people just don’t get it. When I’m verbal (which is now a sometimes thing rather than a normally thing) I normally speak rather fluently and have a large vocabulary, so people assume that I can talk well all the time. They also assume that I’m able to understand things the way they can, and can respond the way they would. When this doesn’t happen (because I’m autistic and have M.E. and my verbal communication is variable) they assume this is because I don’t want to, rather than because I can’t.
I make a point of telling people (or having Johan tell people) who need to know (carers, social workers, doctors, nurses, them sort of people) that I have communication difficulties and that sometimes I may not be able to understand or respond in a typical way. I tell them that this is because I’m autistic and that M.E. complicates it. Some people understand, and know that it means if I’m not responding normally, or need to type, or need to be left alone as I can’t cope that it’s okay, and give me extra time or ask Johan or reword questions. Those people (often carers, and a couple of nurses) are awesome and we likes them very much 🙂 Some others don’t understand initially, but then ask questions and then figure it out. Those people are also awesome, as they’re willing to take the time to learn. Some of those people have told me it’s helped them in other situations, so it’s good for all of us. We likes them very much 🙂
Then there’s the people who for whatever reason, decide they know better. When I have difficulties with communicating (or dealing with sensory stuff, or understanding things) instead of remembering that we’ve told them this can happen, or asking us questions to sort things out, they assume I’m doing it on purpose, or it’s because of psychological reasons and that yelling at me or belittling me will help. Those people we don’t like very much. Some of them have apologised when either Johan or I have been able to explain what happened, but others (often but not always doctors) are certain we’re mistaken and they have it right. They make many problems.
So, what can people do? If you’re told that someone is autistic, or they have communication difficulties (even if only occasionally), believe them. If you don’t understand how you can help them, ask. Autistic people and their carers will often have developed strategies to deal with their difficulties, and will often be able to tell you how best to communicate. If they ask to tell you at another time, or to get back to you, accept that and don’t push it, because a lot of autistic people have anxiety or other issues that mean they might struggle with answering questions spontaneously, and being pushed can make their anxiety or their communication issues worse.
Also, don’t make assumptions on ability based on how they are at any one time. Both Johan and I find that our ability to do things varies from day to day and from hour to hour, and that something we might accomplish with ease at one time may be very difficult or impossible at another time. This is quite normal for autistic people, and doesn’t mean they’ve “regressed” or that they’re not trying hard enough or are lazy or anything like that. That can go for pretty much any activity, including speaking and communicating.
For me personally, I try to communicate verbally when I am able to. If I can’t or it’s a struggle, then I switch to typing (either on my tablet, or on my iPhone). Sometimes it can take me a long time to respond to a question, or I may forget what I’m saying/typing in the middle of it and get very lost. Sometimes I need the person speaking to repeat what they’ve said as I’ve lost track or forgotten. If my M.E, is playing up badly and I can’t cope with light at all (even with sunglasses) then I might not be able to communicate other than by making gestures or possibly spelling words out on Johan’s hand with my finger. There are times when I can’t understand anything that anyone is saying, and I get very confused and scared. If you’re trying to communicate with me, then please accept it might not go well at all times, but I really appreciate it when you try to make it easier for me.
To those of you who make an effort to understand those of us who have difficulties with communicating (or any other task for that matter), thank you.
(I’m having some severe cognitive issues at the moment, caused by the combination of autism and severe M.E, so if there are any mistakes in this blog post please let me know and I’ll correct them. Thank you 🙂 )
Today was the funeral of Emily Collingridge, a young woman who died from M.E earlier this year. I did not know her personally. but her book (written while she was severely ill) has made a massive difference to my life. My thoughts and prayers are with her family and friends.