It’s the 1st November, which means it’s Autistics Speaking Day again. This started last year as a response to Communication Shutdown, which luckily isn’t being repeated again. My post from last year is here, and the website is here.
I was diagnosed with Asperger’s Syndrome when I was 21. Since then I’ve learnt lots of ways to deal with some of the more difficult parts of it, mostly thanks to Interface (the autism unit at South Tyneside College). This doesn’t mean I’m “cured”, though. I was born autistic, and will be so the rest of my life. I still have a lot of difficulties, and the M.E. also makes it worse. Here’s how it still affects me.
Over-sensitivity to noise, light, smell and touch.
That’s all the senses except taste, where I may be over-sensitive a bit (I can’t cope with spicy foods, and much prefer plain foods) but it’s a lot easier to control. My reactions to these are a bit less extreme than they were, but it’s an area where M.E. makes things worse. I normally wear sunglasses when I’m outdoors, I have ear defenders to wear when it’s noisy (which I often have to wear if I go out in public because of the noise of traffic, people and things) and sometimes listen to music to drown out other noises (often with the ear defenders). M.E. in itself causes over-sensitivity, so for me it just means everything feels a hundred times worse when I’m having a bad day. On those bad days, I lie in bed with an eye mask and ear defenders on (because the normal noises around me and all light is too much) and no-one can touch me as even my pyjamas and bedclothes feel like torture. As for touch, I do not like people touching me, but as I’m unable to do things for myself I have to allow it. I am getting better at coping with it when it’s not a bad day, and even let a stranger put make-up on my face a while ago. I also can’t cope with strong smells as they make me feel like I can’t breathe, and some of them make me vomit.
Problems with communication.
Communicating with people uses a lot of energy. It takes energy to listen to people, process what they’re saying, and then respond in a way that they can understand. This is another area that M.E. makes more difficult, as I can no longer just throw more energy into communicating. I am verbal most of the time, but I have more times of being non-verbal than I used to, since I became more ill. I become non-verbal when I’m overwhelmed. With autism it’s from sensory overload, and the M.E. causes it when I’m overloaded because of pain. This can cause problems- when I was in a care home earlier this year I was unable to answer open questions, became non-verbal and wasn’t able to communicate that I needed a drink or the toilet so went without for 19 hours. We have similar problems with the home carers (especially since Johan has the same problem answering open questions) but most at least some of the carers are learning to work around it.
I’m also unable to use the telephone as I struggle to hear what the other person is saying without being able to lip read, have to respond almost instantaneously, and it makes me very anxious. A lot of places still don’t allow communication by email, so I’m reliant on my husband to phone for me. My favourite so far is the National Autistic Society phoning me twice (once on my landline, once on my mobile) and insisting on talking to me. When my husband told them I couldn’t talk on the phone, they asked why, then one of them didn’t understand when my husband said it was due to my autism. They said they were going to write to me about what it was, but so far I’ve not received anything, and it was at least a month ago.
Meltdowns and shutdowns.
This is hard for me to talk about, as I don’t really want other people to know what I’m like at my worst, but since they’ve been happening more than normal recently I should probably mention them. A meltdown is similar to a panic attack in appearance (I also experience panic attacks) but it’s not the same inside. With a meltdown I lose complete control. I say my brain explodes, as that’s how it feels. I’m so overwhelmed by all sensory input, all my internal feelings, all emotions that I just can’t cope. I may scream, may hit, bite or scratch myself (I keep my nails short after scarring myself during a meltdown), and there’s nothing anyone can do to stop it other than wait it out. Unlike a panic attack, I don’t have enough control to end it as I can’t think at all, it’s just a massive amount of badness in my brain. Afterwards I’m completely exhausted, and need to sleep (this was true even before the M.E.). They used to be very rare, happening at most once a year, but they’ve happened a few times this year because of issues with carers and things.
A shutdown has the same brain explodiness, but instead of it being expressed outwards I just stop doing anything. I don’t move, don’t respond to anything, can’t hear, can’t think. I will remain in the same position for however long it lasts, which can be hours. Again, it’s exhausting and I’ll need to sleep when it’s over.
Anxiety and panic attacks.
Anxiety is common in autistic people, and I’m no exception. I do not like change, and though I don’t need a set routine as such, if there is a timetable then I don’t deal well with it being changed. I also become anxious if there’s too much sensory input, as my brain can’t process it properly. An interesting cause of anxiety is related to the dislike of change- I can’t cope if my carers arrive early (though can if they come late). This is because I have to mentally prepare for them invading my personal space, expecting me to communicate with them and possibly touching me. This takes time, so if they come early I’m not prepared and panic. I also panic if my anxiety builds up and I can’t get rid of it, or if there’s a sudden loud noise or someone touches me unexpectedly (especially if already anxious). When I panic I can normally calm myself down pretty quickly if the trigger is removed, but it is very tiring. If people talk to me, touch me or tell me to breathe (for some reason, trying to control my breathing causes me to become very anxious and panicky) then it will last longer. I used to rock, pace or flap to reduce my anxiety, but my M.E. means they’re no longer an option. Most of the normal suggestions (breathing, relaxation exercises, and things) don’t work or make things worse, but distraction sometimes work so I may listen to music (which also has the advantage of blocking out noise).
Lack of body awareness.
This one didn’t used to be a big problem, but since I became ill it’s more of an issue. Most of the time, I have no real awareness of my body. This means I’m not sure where it is in space, what it’s doing, and how it’s feeling. The reason this is a problem is because often I’m in pain (M.E. causes muscle and joint pain, headaches, sore throat and other pain issues) but I’m not aware of it, or if I’m aware of it I can’t tell where it is. I get asked a lot by doctors where the pain is, and it can take a long time for me to figure this out, if I ever do. The doctors don’t really understand how someone can be in pain, but not aware of it or where it is. Luckily for me, Johan is pretty good at telling me when I’m in pain (I tend to get crabby with him) so I can take painkillers.
There are probably other areas where autism affects me, but brain fog means I can’t think of them right now. You may notice that social interaction isn’t there. That’s because it’s not a problem for me at the moment, as I’m pretty much housebound so the only people I really interact with in person (other than my husband Johan) now are doctors and carers, and I have scripts to deal with those situations. Johan understands me very well- he knows if I can’t speak I will type and use gestures to communicate, knows what to do if I’m panicky, in pain, overwhelmed and things. He also has some of the same issues I do, and is currently being assessed for autism.
There are many positives to being autistic, and I wouldn’t want to not be, as it’s a part of who I am. But just because I am able to type well, speak (most of the time) and before getting M.E. able to live pretty independently it doesn’t mean I don’t have my problems due to it, and I still need help to deal with them. I’m getting there though 🙂
4 thoughts on “Autistics Speaking Day: How Autism Affects Me Now”
I’m really sorry you’re having more meltdowns. 🙁
Thank you for being honest and courageous – for sharing your story with us. You are helping someone you don’t even know. My son is 7 and dx’ed with autism. It sounds like your experience is similar to his – very similar – , so what you describe as being helpful and as being NOT helpful for you is exactly what I need to know. Especially the part about meltdowns. For example, I’ve tried coaching my child about breathing during one and it makes him angry, too. I wasn’t sure if I should just be with him or distract him – both of which I do – so thank you VERY much for sharing your story.
Thank you for talking about this. My son is 3 and was recently diagnosed. We are still working to understand how things affect him and what we can do to help. Several things you describe sound exactly like him (especially going nonverbal under stress), and you have given me valuable insight into helping him cope.