Help with Tourettes please!

I'm sorry for delay in responding to your questions... the site does not email with the discussion and I don't login often. I think you are bearing a lot on your own and with your family. I really hope for you some support and space to talk about your own stresses and concerns around this with someone who is not going to judge you. Your son is very young and it's hard to be a parent and know how to communicate, especially when it sounds as though you have a very different way of percieving the world. I know that my mother was very alone in bringing me up and this made it hard for her to be with me. I think this is a problem in our culture and not just for families with children who have neurological differences. I would be as gentle as you can with yourself. Your son may well not be happy at times... if you can bear with him in his pain rather than hurting yourself or beating yourself up for not being able to fix it then perhaps you will find a way to share the stress...? I don't know? I think a lot of people feel their kids should be happy all the time. Yours son's stresses and yours are linked to wider networks, are you getting enough? Company, support, time...? For my part I feel discomfort a lot of the time what really helps it to pass is gentle company and knowing I am not the only one who struggles! I think it makes total sense to have feelings of hurt and anger when your son behaves the way he does towards you, your feelings are as natural to you as his behaviour is to him. My feeling is that crushing your experience will not help him to have his, you can both exist and work hard on understanding your differences. As he gets older he will need to understand your differences too. I don't know about the children at school... perhaps trust yourself to decide and see what happens. If this makes any sense I suggest trying to stay 'open' you are learning all the time as a parent it's not easy. I know that. I've worked hard forgiving my parents, they have their story and I have mine. Ok I've said a lot... I hope there is some company in this for you, I wish you well. I felt glad to see your response and I'll try and keep track of the discussion as I can. There is some interesting ideas about tourette. Put simply that we shout/express what other people don't say! I think it's a funny thought and it makes sense. I have a tendency to spit a lot around my father who I'm sure is secretly furious with me and never says anything! I don't spit with everyone and on my own I notie I do it when I'm angry or disgusted... uncontrollably. So we keep going the same way! I spit he pretends everythings ok... it's all there between us... 

Hi Longman

Thank you for posting. 

For the most part, our son's aggression comes out of the tiniest things, not provoked by our requests for discussion...rather more about anything that he considers to be 'wrong'. A great deal of the issues arise from his perception of 'unfairness', but it can come if things don't feel right, things are not being done as he sees fit, if he doesn't get his own way, if his brother is challenging him in any way, if he considers that a rule has been broken...etc, etc.... A lot of the time, I can clearly see the trigger, and although his reaction is clearly over the top, I can understand why it happens. The rest of the time though, we cannot begin to understand the need for the meltdown!

When we try to discuss his behaviour with him, it is usually unforthcoming...but he is only 8 and struggles with emotions and being able to explain why things happen the way they do. I like your point about not facing him straight on though...I can see how it is less confrontational side on so I'll definitely try that when we talk.

I think you are right about school...I'll have to think how to tackle the discussion on that one pretty soon. The book sounds great. I'll certainly investigate that too.

Thank you so much for your time and advice.

R 

I have a book on my shelves by James McConnel "Life, interrupted - the true story of a life driven by tourrette's" published 2006 by Headline Review (paperback 2007) .  It is an autobiographical work and though one sole perspective, it might be useful. I don't think it is linked to ASD but certainly illustrates the problems.

I venture to ask if his unpleasant or aggressive actions come out of the blue or arise when you are trying to discuss things with him.

Part of sensory overload seems to be a bottleneck effect. If your mind is full of unresolved issues going round and round in your head, and someone suddenly confronts you and wants explanations NOW, then the reaction is because the capacity to cope has been overwhelmed.

You don't have to be ASD to experience this, as everyone experiences stress overload sometimes, but it happens much more often with ASD and it may not be so obvious as with an NT because the boiling point is near all the time, and he may be less effective at showing it.

Try asking if it is a good time to talk, and also saying what it is about first. Try not to sit facing but to one side, so the pressure of confriontation is eased. Don't both parents go at it.

Try asking if there are any issues troubling him that he feels you can help with, rather than you deciding the topic.

Certainly do not assume that everything is alright in school. Things have improved a bit for neuro-diverse diabilities, but not hugely. Someone odd will get bullied. There may be many things causing anxiety, including his mis-perception of things and being dis-proportionately concerned about them. He wont be able to discuss this with peers. So it'll just go round and round in his head (spiralling anxiety and negative re-inforcement is par for the course). The adverse reaction may be for what seems trivial reasons but it is often just the last straw on top of many burdens.

You have to build a perspective around ASD/tourrettes that understands that anxiety is high, and a state of tension is prolonged, even by normal teenage standards.

Dear Katherine,

Thank you SO much for your honest and frank reply. It has really helped us reading your comments. I can see how the environment can affect anxiousness and I know, from knowing our son, that this is true of him too. Unbelievably, and luckily, the children at school don't seem to be behaving differently to him, or even really noticing his ticks too much...at least, he has never said that they have noticed or commented on it.....am I right to assume that because he hasn't mentioned it, that they haven't? As I'm writing this, I am thinking immediately how stupid I am not even asking him to check that this isn't a big cause of concern to him. For our part, we are totally accepting of his ticks and draw no attention to them at all and when he brings them up, saying that they hurt or that he has no control over them, we gently reassure him that they will pass eventually and that it is absolutely ok and that he is handling it really well...but then we pass on as quickly as we can to 'normal' conversation. Do you think I should ask him about the other children, or will this bring too much attention to the situation so that he begins to look for reactions form his peers?

I think the squeezy thing is a great idea...we have talked in the past about a stress ball type thing, which I think we should pursue...something for him to carry around with him. 

I hear what you are saying about giving him a quiet time and space to tell him how we feel about him and totally agree with it and see that it is the right thing to do....When we are going through a 'bad patch' with him (and it does tend to go in waves) he can be so unpleasant and rude and cutting and aggressive towards me and I get very upset at myself for feeling so hurt and cross with the way I get spoken to a lot of the time but I find it really hard to see the wood for the trees. In calm, rational moments, I KNOW his behaviour is out of his control as a result of his Tourettes, and that he needs to know that I know that....but I struggle with separating the two a lot of the time; I go into protection mode for my younger son, who takes a huge amount of flack, and I constantly feel as though everything I do gets thrown back in my face and feel as though he doesn't love me at all! I know this is ridiculous and it is me that must change. Reading your comments has really made me think about how I must deal with this better. 

My overriding fear is that he isn't a happy child lots of the time....do you have any thoughts on that from his perspective? ( A very hard question I know as you don't know him...but from your experience?)

Thank you for taking the time to write what you did. Take good care of yourself,

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

Hi Colinthecat

Thank you for posting. I'll try anything so will definitely use the contact details you suggested. Many thanks

Hi

I am sorry that you are having such a hard time at the moment.  I have posted a link below for the helpline who may be able to provide you with more information and support.

www.autism.org.uk/.../Autism-Helpline.aspx

Good luck

Colinthecat - mod