Alex Lowery speaks about autism

Tics and Stims

Written on 2nd Aug 2017 by Alex Lowery

I recently wrote a blog for ‘Trigger Happy’ a site about Deanna Payne’s life with Tourette’s syndrome. Click here to view this website. I have suspected for a while that I may have Tourette’s so I was asked to write a guest post for this website. You can read what I wrote below and click here to view the original article. As you may know, Tourette’s syndrome is a fairly common comorbid with autism.

IMG_6606I have been diagnosed with autism, dyspraxia and ADHD. As well as the three neurological conditions I’ve been diagnosed with, I also suspect that I may in fact have a fairly mild form of Tourette’s Syndrome, or at least some kind of tic disorder. I know that tourette’s is a condition that sometimes accompanies conditions like autism and ADHD. I have never been officially diagnosed with tourettes, so I am uncertain but I have a feeling that I more than likely do have tics. For as long as I can remember, I’ve had movements that I’ve been unable to completely control. For most of my life, I thought the movements were 100% down to autism and nothing else. I thought this because there is a form of movements known as ‘self stimulatory behavior’, or stimming for short. These movements are very common among individuals on the autistic spectrum. To read an article I wrote about stimming click the link here.

The thing is, my stimming seems to have always been much harder for me to control than it has been for most other autistics. I went to a school for autistic children for about two years and I am told that I was the worst in the whole school for these movements, literally doing them non stop all the time. I don’t doubt for one moment that I do and have always stimmed, but what if there’s more to it than that? What if I tic as well as stim? From what I understand, the main difference between ticing and stimming is that tics are completely involuntary. A tic is like a sneeze. In a lot of cases, you cannot physically stop yourself from ticing. Stimming can be very hard to control too, but in a different way. Stimming is more of something one feels the need to do when one is excited or just generally focussing on things. Stimming is important for a lot of autistics and it does help them cope with stress and anxiety. However, when you need to stim, it’s more like a thirst to do it. It’s not normally something you cannot physically stop yourself from doing, per say.

There was a point when I was in my mid to late teens when I was able to control my movements to a greater extent than I can now. When I was on my own, I’d really go for it, but in public; they were reasonably controlled, but when I got to about 20/21, I somehow found that I was less able to control my them in Public. Why this was, was a mystery to me, but it’s the truth. I don’t really go for it in Public even now, but I frequently find that even when I’m just talking to someone, I’ll be doing twitches, with hands, shoulders and maybe even my face to a certain extent. As I do these movements, most of the time I am completely unaware of it, but people will bring it up and ask me about them. I’m no expert, but this to me sounds like I could well be experiencing tics. People have even looked at my twitches and then asked me if I have tics. When I was diagnosed with dyspraxia and ADHD, the Psychologist who assessed me also thought I had tourettes, but wasn’t qualified to diagnose me. I have also heard that it is quite common among people with tourettes for the tics to become more profound after a certain age. I’ve seen people with the condition who get to a certain age and suddenly the tics increase. In some cases, the cause for the increase is known and in other cases, it isn’t.

I don’t have so many verbal tics though. There seems to be some debate as to whether or not you can have tourettes without the verbal tics, but several people I’ve spoken to (including the Psychologist who diagnosed me with dyspraxia and ADHD) seem to say that vocal tics aren’t necessarily required for a diagnosis. I feel like tourettes covers a spectrum and works somewhat differently for each individual. The type where you shout out swear words is the only type the media seems to focus on, but that definitely seems to be a stereotype. I also think I may even have a few subtle verbal tics. Before I give a talk, I seem to feel the need to do a few coughs before hand. There are other times during the day were I will just cough before I start speaking. I’m not certain if that’s a tic but I often feel like I somehow need to do it.

I also find that I will tend to mimic things I hear a lot without even thinking about it. You could say this is just echolalia (an autistic trait where you repeat learned phrases), but it does seem to be common among people with tourettes as well, including the owner of this site. But even if it’s nothing to do with tourettes in my case, that doesn’t mean I don’t have it.

I’ve heard some people have tics where they shout out loud what they’re thinking without meaning to. I don’t have this so much (even though I do tend to say things before I’ve thought them through), but certain thoughts can trigger certain movements, which is similar.

I find that when I’ve had to control my Stimming for a period of time, that my tics in Public seem to increase and when trying to hold my tics in, my movements in general tend to be very extreme when I’m at home. When I’m on my own, or even just with my family who accept it, I tend to be very extreme with my movements, which I believe are a mix of both stims and tics. I’ll jump up and down as well as run around. These movements together really provide a strong relief for me. I’ll tend to use my whole body as I think about past events and things that make me really excited. The stimming aspect in particular can really provide a strong focus for me when it comes things I’m interested in.

I don’t know if I have tourettes or not. I have heard it is possible to have a tic disorder without tourettes. I do know I would like to see if I can get a diagnoses one day, but the neurologists who diagnose it seem to live far away from me and it is jolly expensive. I would still like to be assessed eventually, maybe. People have asked me ‘Why is it worth it? Will the diagnosis really change anything?’ I can see why this is asked and I’m still in conflict as to whether or not the diagnosis is worth it, but the fact to the matter is that my movements have increased and controlling them has been a big difficulty for me. If I was diagnosed with some form of tic disorder, I’d understand myself better and I’d also feel like there would be a reason for the increase in involuntary movements. It would also give me something else to speak about and raise awareness of, which I’m passionate about doing. Also, to be perfectly honest – neurological conditions and how they work are a bit of an obsession of mine, so I guess I’m also just curious.

Thank you for reading. I hope you enjoyed this article.

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Organisations Alex has worked with

  • Autism Cymru
  • Chester University
  • Glyndwr University
  • National Autistic Society
  • St John's Ambulance
  • Welsh Government

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