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Help with Tourettes please!

boyofsteele

I am not sure if anyone can help with this....I have posted before about issues concerning our son's autistic tendencies, but he was also diagnosed with Tourettes and this now seems to be coming into play more seriously than the autistic tendencies, although I know there are very many overlaps and some consider Tourettes to be part of the spectrum.

What started out as small 'ticks' like throat clearing and repetitive little coughs, eye blinking and mouth-wiping for example, are now changing to more aggressive/more noticable ticks, like whistling in the middle of sentences, very wide mouth opening (causing split corners of his lips) and severe head shakes which hurt his shoulders and neck and cause discomfort and are exhausting for him. 

Coupled with this is huge amounts of aggression, which, again has overlaps with autism, and blurting of very rude outbursts when he is angry.

We were warned that the path might be that the small ticks might increase to where they are now, with a possibilty that they might escalate into inadvertant lashing out at people. He already lashes out at us in anger, but it is our very real worry that the Tourettes side of things will lead to the next stage and begin to involve others. His teacher at school has been distressed by the violence of his latest ticks, but at school, his behaviour issues are kept at bay, with this exception.

Does anyone else have a child that suffers in this way, as our son truly does suffer as he struggles to make sense of why he behaves like this and we are suffering from the worry that we do not know how to help him adequately.

Obviously I can do my own research, but I would be really appreciative if there is someone who could reply if they are having a similar experience! Many thanks!

Parents

  • Hi, I experience ticks and twitches, I can't speak for your son's experience as every brain is different and I can say what has helped and informed me to understand my own experiences in the hope that this helps.

    Environmental conditions and people around me affect my ticking. The more stimulus, ie. noise, lights etc the more I will tick. Ticking is a way of releasing nervous tension. There is the tension in me and the tension I experience with other people. For example with some people who can laugh and find a way to be more relaxed even when I am ticking I find I will tick less and find my ticking funny and less extreme. When I am in environments which expect me to fit in to other people's routines or ways of behaving my body becomes more tense therefore more need to release tension. Also if I am around people who are holding a lot of worry, anger or whatever I can feel it and I tend to twitch and say things which are utterly odd to me. Your son may be very affected by his environment and I would say that the more people around him can learn to be expressive and wacky with him and not so scared that may help. We sort of exist in relationship so we affect each other and if he is stuck as the 'one who struggles' that might be making it harder. I think also quiet time and giving him space to let you know what he needs and really believing him, as it seems you do. Also things to hold onto squeezey things, or bitey things to help him have something to fight that isn't you. Experiment with changing your responses. If he lashes out, this will be in response to a body message, a threat to him, it may be that people are to close for his system to cope with, don't rush towards him talking or touching it might be worse.

    I hope this is of interest. I wish you and your son the best.

    Katherine

Reply

  • Hi, I experience ticks and twitches, I can't speak for your son's experience as every brain is different and I can say what has helped and informed me to understand my own experiences in the hope that this helps.

    Environmental conditions and people around me affect my ticking. The more stimulus, ie. noise, lights etc the more I will tick. Ticking is a way of releasing nervous tension. There is the tension in me and the tension I experience with other people. For example with some people who can laugh and find a way to be more relaxed even when I am ticking I find I will tick less and find my ticking funny and less extreme. When I am in environments which expect me to fit in to other people's routines or ways of behaving my body becomes more tense therefore more need to release tension. Also if I am around people who are holding a lot of worry, anger or whatever I can feel it and I tend to twitch and say things which are utterly odd to me. Your son may be very affected by his environment and I would say that the more people around him can learn to be expressive and wacky with him and not so scared that may help. We sort of exist in relationship so we affect each other and if he is stuck as the 'one who struggles' that might be making it harder. I think also quiet time and giving him space to let you know what he needs and really believing him, as it seems you do. Also things to hold onto squeezey things, or bitey things to help him have something to fight that isn't you. Experiment with changing your responses. If he lashes out, this will be in response to a body message, a threat to him, it may be that people are to close for his system to cope with, don't rush towards him talking or touching it might be worse.

    I hope this is of interest. I wish you and your son the best.

    Katherine

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