I think my little brother has Tourette Syndrome?
July 19, 2014 4:12 PM   Subscribe

My 9 year old brother might be associated with Tourette Syndrome and I'm not sure what to do about it.

The more I read about Tourette Syndrome, the more I become convinced that my brother might be associated with it. He has this tic in which he would keep pushing his neck forward for no apparent reason. I even remember in the past how he would constantly blink his eyes. He also misbehaves at home, rarely stays put (only when hes busy with the ipad), and keeps yelling most of the time..not in an angry manner but in a way to annoy others such as repeating the same word/phrase endlessly or imitating animal sounds. He also has this violent habit in which as soon as he comes home from school, he spends like an hour in the back yard breaking dangerous objects against the wall such as bricks, glass and wooden materials. Once, he even dragged the wooden chair from the kitchen and threw it out of the window from second floor in an attempt to put the pieces back together.
We took him to a child counselor but the problem is that he becomes extremely silent and calm outside the house and doesnt reveal his true behavior. As soon he comes back home, he literally explodes!

Even though Tourette Syndrome doesnt affect the child's intelligence, he was recently diagnosed with dyslexia due to his learning difficulties and that might have exacerbated his state further.

So my question is, how am I supposed to treat him at home? Should I just let him be or punish him in a sort of way?
And do you think it is a good idea to tell him that he might have this syndrome? Just to make him feel that he's not alone in this
posted by bubbletea54 to Health & Fitness (21 answers total) 2 users marked this as a favorite
Do not tell a 9 year old you think he has Tourette's. He isn't going to have any idea what that even means and there is no sense in alarming him and making him think he has what a child would probably view as a weird and scary disease.

I would think the first step would be talking with your parents about it. Do they see that he has an issue and are they interested in getting him some help?
posted by something something at 4:22 PM on July 19, 2014 [4 favorites]

Let his parents parent him?

Unless you are his guardian these issues are probably best directed towards his parents. Let them decide his care.

If you are his primary caregiver then you need to say so or the advice you get here really won't be relevant.
posted by cjorgensen at 4:22 PM on July 19, 2014 [3 favorites]

Response by poster: I spoke to my parents about it and it didn't really make a change. They still yell at him for misbehaving and my father takes him to an educational center on daily basis. I just want to know whats the most appropriate way to treat a child with Tourette's
posted by bubbletea54 at 4:42 PM on July 19, 2014

I've had 9 year old brothers who also yelled a lot, broke things in the back yard, and repeated annoying phrases. I think you really need a professional to see him on a more regular basis if you think that he has problems that are affecting his ability to do what he needs to do at school and to behave appropriately at home. If he has Tourette's for real he wouldn't be able to just turn his behavior off at the therapist's office - the definition of tics is that they are involuntary. It's hard to tell if your expectations are appropriate for him or not. Are you also a child? (serious question)
posted by treehorn+bunny at 4:43 PM on July 19, 2014 [5 favorites]

I think you're asking a totally reasonable question and you're right to be concerned about this.

When I was 10, there was a boy in my class who behaved in a way similar to what you describe, and the teacher did everything she could think of to discipline him, and of course it changed nothing. She went so far as to demote him by two grades, with the express purpose of shaming him into improving - and that's a big deal *especially* in the UK where the concept of "failing" a year or being held back another year in the same grade is totally unheard of - you go on to the next grade the next year no matter what.

Looking back it's plainly obvious that that kid had some kind of tic disorder that he couldn't help. I feel terrible thinking about how humiliating and awful it must have been for him.

It is also the case, though, that people with these disorders can, through supreme effort, hold them in for periods of time when they consider that they absolutely have to, and then when they get back to a safe space, out it all explodes. So they can have *some* voluntary control for a limited amount of time over *when* and *where* it comes out, but it HAS to come out, same as you can control your bladder and bowels for a certain length of time but you can't control yourself to the extent that you'll never have to go to the bathroom again for the rest of your life. That's what I understand it to be like for people with Tourette's and other tic disorders, though I'm not one of them and I don't personally know any.

I definitely don't think you should tell him he has a disorder when you don't know for a fact that he has it, though. I am not a doctor, if I were I certainly couldn't diagnose anyone over the Internet, and you can't either. So when I say it sounds like a kind of tic disorder, that's not a diagnosis, that is my totally nonexpert opinion which is worth exactly as much as you paid for it.

Having said that, I don't think your suspicion that he has Tourette's or something similar is just to be dismissed, he is your brother and if you think you see the symptoms of something serious then of course you should try to do something, and if you think it looks like what you understand to be
Tourette's there' no point beating about the bush there. Just don't go blurting out to him "hey kid you have a neurological disorder which you can only control with treatment, but you won't get any because I can't take you to a doctor [I assume, since that would be his parents' decision??] and nobody else is motivated to take you to a doctor either."

Here is what I would do if I were you: film him while he is [doing what you perceive to be] ticcing and then, look up Tourette's support groups in your area, call them up, and tell them what you've told us. They will hopefully be able to give you some actions to take to convince your parents to push for diagnosis, and they will know who are the best specialists to take him to, so that you really get a fully informed opinion.

Good for you for trying to help your brother, and don't give up.
posted by tel3path at 4:45 PM on July 19, 2014 [14 favorites]

I'm curious about the family dynamics here. You do sound unusually involved for an older sibling, but sometimes siblings are unusually involved. Is there some reason that this is your responsibility?

I don't think you should come up with a diagnosis for your brother, and you certainly should n't tell him that he has a disorder when you don't know that he has it. It sounds like something is going on, but you're not in a position to figure out what it is. What you could do is carefully document all his odd behaviors and then encourage whoever is in charge (you, if you're his guardian, or your parents if they're in the picture) to try again with a different mental health professional. If he behaves normally with other people but unusually with his family, you should tell them that.

Has someone talked to his teacher to find out whether he has behavioral issues at school? Being a 9-year-old with dyslexia pretty much sucks, and it's possible that he's spending all his emotional energy keeping it together at school and just needs to let go when he gets home.
posted by ArbitraryAndCapricious at 4:46 PM on July 19, 2014 [4 favorites]

Per her previous question, she's in her early 20s. OP, this does not change the fact that you need to let your parents parent. It's not your place to diagnose, treat, or punish your brother.
posted by amro at 4:50 PM on July 19, 2014 [1 favorite]

I really disagree that this isn't the OP's place to try to deal with. The OP is this boy's adult sister, so it is OKAY and RIGHT for her to care about this. The OP has stated a rational case for why he could possibly have a disorder that is forcing him to perform involuntary behaviours. Furthermore, she also describes her parents trying to deal with this possibly involuntary behaviour through yelling.

Yes, the OP could be wrong about the cause of the behaviour but she's made a good case for investigating it, and I really don't think it's enough to say you're only his sister and not his parent, so let them go on yelling at him for his behaviour and who cares if it turns out 25 years down the line that you find out by accident that it was involuntary all along. Imagine the damage that would do to this kid.
posted by tel3path at 4:58 PM on July 19, 2014 [23 favorites]

It's reasonably common for young boys to have Tourette-like tics like this. Age 8 is really the prime territory. Sometimes it progresses, sometimes it just peters out.

My little brother had a whole host of physical and noise-making tics when he was a kid. If I had to guess, I'd say they started showing up when he was about 7 years old. He got in trouble all the time for them. He grew out of it eventually, and by the time he was about 15 the tics were nonexistent. He's an adult now and I've asked him about them, and he says he barely even remembers them happening.

Just completely ignore the tics when they happen. Chances are good it will pass.
posted by phunniemee at 5:00 PM on July 19, 2014

I just want to know whats the most appropriate way to treat a child with Tourette's.

This is the wrong question. First, you don't know that he has Tourette's. Second, you are not a mental health professional who can treat a person with a severe disorder (I'm assuming you wanted to know how YOU should treat him).

He definitely sounds like he has a disorder that needs to be evaluated, but as others said, you are not the parent so all you can do is implore your parents to take him for an evaluation. You could also try to get the school to put pressure on them to do that.

It's great that you are concerned about your sibling and want to do whatever you can to help him.
posted by Dansaman at 5:00 PM on July 19, 2014 [9 favorites]

This is the wrong question.

I agree. Don't treat your brother as though he absolutely has your armchair diagnosis.

Have you talked to the folks at the educational center/whomever diagnosed him with dyslexia about how to interact with him? I will point out that it will do absolutely no good if you and your parents are treating him differently, and a professional would be the best person to explain to everyone what is best for your brother. Best of luck to you all.
posted by sm1tten at 5:05 PM on July 19, 2014

Rather than *telling* him anything, or choosing between letting him be and punishing him, why not try talking with him and asking him how he feels? From your description, it sounds like your brother might be holding his behavior together outside the home, and then just letting everything loose as soon as he walks in the door of your house. Do you have time to spend with him doing something that he would enjoy? One great way to decrease misbehavior is to keep a kid busy doing something they like to do. I think it's great that you obviously care so much about your brother and want to help him. Best of luck.
posted by epj at 5:06 PM on July 19, 2014

Response by poster: Thanks a lot guys.
I'm concerned about my brother because I genuinely care about him, and he even though he loves to piss me off most of the times I feel really bad for him. My aunts and cousins make him feel bad whenever he misbehaves and blame it on my parents for failing to discipline him. The thing is, I come from Dubai, and my family are not well familiar with these psychological disorders. To them a child is either normal or insane and thats it. I do talk to my brother a lot but he always ends the conversation whenever I bring up his school life or tics. His teachers tell my parents that he's very silent in class but doesnt make the effort to learn or participate in class (mainly because he doesn't know whats going on).

I did find a Child Neurology center near by and I hope they would depend on our observations rather than his behavior in the center. I think I'll take videos too
posted by bubbletea54 at 5:44 PM on July 19, 2014 [4 favorites]

Good luck and I hope you find some answers for your brother. Hopefully there are some support groups for Touretters in Dubai that you can call for advice on what to do next, but if not, you can call a support group in another area; and if that fails you can call a support group anywhere in the world until you find someone who knows where you can go for answers.

But if there is a Child Neurology center nearby that is awesome. Most likely you can get some answers from them. I do think that a support group would be worth phoning first, because they would be able to suggest ways in which you can possibly persuade your parents to take action and what that action would be. Especially if you can find a Dubai support group they will know the system very well and will know what problems you might come up against and how to navigate.

"My aunts and cousins make him feel bad whenever he misbehaves and blame it on my parents for failing to discipline him. [...] To [my family] a child is either normal or insane and thats it. I do talk to my brother a lot but he always ends the conversation whenever I bring up his school life or tics."

This is kind of heartbreaking for me to read and I'm so glad you're there to try to find him some real help, and not just walking by on the other side as many people would do. Maybe it will turn out that your brother doesn't have anything neurological going on, but if so, you still will have more answers and a better definition of the problem than you have now.
posted by tel3path at 6:01 PM on July 19, 2014

I just want to know whats the most appropriate way to treat a child with Tourette's.

You treat them like other people. I've known two people with Tourette syndrome. If you think of it as nothing more than a stutter you'll be fine. Don't finish his sentences. Don't draw attention to the outbursts. Tourette syndrome generally (to my knowledge cause behavioral issues), so the physical stuff is either unrelated or may be an reaction to an actual condition, but honestly, you don't need conjecture. You just need to treat him as a brother and deal with your reactions to his issues.

You've brought this to your parent's attention. That's about all you can do other than committing to being his ally. Stick up for him.

If he's only misbehaving at home it's because he either feels safer there or because there's stimulus there that causes him to act out. He needs a professional. Reads like most your family does, but he's the one that needs it the most.
posted by cjorgensen at 6:10 PM on July 19, 2014

I'm not sure of the best advice I can offer, but all I can say is, don't punish him. Believe me, I know how it feels to be treated differently because you're different from others. Punishing just makes things much worse. There's some things you just cannot help.

Yeah, in hindsight, family counseling may be a good idea.
posted by dubious_dude at 7:35 PM on July 19, 2014

I think you are right in taking an interest in your brother, and he definetly needs someone's help, particularly professional help. Is there a school counselor you can go speak to about your worries about what happens at home and see if maybe they have some resources you can use?

Just as an anecdote, I have a family member who had some sort of cognitive/behavior issues all through his childhood but his dad found them funny in a "haha look at my boy he can beat all his cousins" or whatever, and his mom was very lax about discipline and school in a "if you don't feel like it you don't have to go to school" way, so he grew up with no one ever making the effort to get him treated and help him develop adequately. Long story short, he got kicked out of a bunch of schools and now (early thirties) doesn't work, only has temporary "bad influence" friends and no one can stand him. It's sad cause he's probably aware he's barely tolerated in family events, but no one really likes him being around.

Not saying this relates to your brother directly but just an example of how behavior/mental issues can mess up a child's school/friends/family life. It's better to get help as early as possible.
posted by CrazyLemonade at 9:06 PM on July 19, 2014 [2 favorites]

You are a great - wonderful - big sister. And you're smart enough to realize that your brother's behavior is not the same as that of every other boy his age - and that his behavior threatens his ability to manage a normal adolescence. You know there's a need for some sort of intervention involving an examination by someone whose area of expertise includes Tourette's and similar syndromes. You're right.

Just because you have parents doesn't mean they're on top of everything. They may not be at all familiar with neurological disorders, may not understand them, may actually have little interest in doing so - especially if their way of handling your brother is to discipline him and ignore your recommendations that he undergo an evaluation.

I wouldn't tell your brother that you have a suspicion of Tourette's because there are so many variations of that condition and other similar disorders and you really don't have the capability to determine exactly which problem he has, if any. Plus it might scare the heck out of him and he doesn't need that right now; for one thing, he probably knows there's something wrong and he's likely scared already. It will be much easier for him if you can manage to get him attention from an expert who can offer the correct diagnosis - and treatment at the same time - it will make it easier for him to deal with. Experts are easier to deal with than parents in situations like this, anyway.

My sister had grand-mal epilepsy - and it was severe and uncontrollable by anything they had at the time (the 60s). She had full-blown seizures, the dramatic ones. I had something else - something which turned out to be absence seizures - maybe a hundred of them a day, but I didn't connect my "weird brain" problems with epilepsy at all - it was nothing like my sis's epilepsy. My parents wouldn't take me to a doctor because they had all they could do dealing with her - I guess (haven't completely got past this 45 years later). In those days there wasn't the overload of information from so many sources as we have today and people didn't really know much about conditions like absence seizures so I had to wait until I was 18 and then find my own doctor. When I was diagnosed and put on medication, it was a sweet, sweet blessing to know that I had something with a name, something recognizable and treatable.

You're old enough that you can be involved with your brother's care from the sidelines without incurring any butt-out business - just push ahead. Stand with him and love him and do whatever you can to get him some help, but do remember that it's NOT your responsibility - the responsibility lies with your parents - so if you can't get him all fixed up right quick, know that there's only so much you can do.

I really like tel3path's idea about filming his tics and behavior and asking a Tourette's group to review your material and see what they think. Document everything. In the meantime, don't punish him, just let him know firmly that breaking things - or violent behavior of any kind - is not okay. And again, if you can't control his behavior, it's up to your parents to handle it.

I wish you the best and send you a pat on the back for caring so much.
posted by aryma at 11:56 PM on July 19, 2014 [2 favorites]

I know he's only nine, and you're not a trained mental health professional, but is there a way you can periodically get him away from parents and everything else, just you and him, get lunch or something somewhere quiet, just--talk about how he's feeling about life? You tagged this ADHD even though you didn't bring it up in the question, and there is kind of a thing where kids with ADHD, especially boys but not exclusively, crave a certain level of stimulation that they don't ordinarily get, and act out in risky/inappropriate ways trying to get it. But I think it's entirely possible for that to happen even in people who don't have that particular diagnosis.

If you're in an area where mental health treatment and stuff is difficult to get and/or especially stigmatized, that can be a problem in any case, but sometimes things like that can be helped significantly by just identifying how the kid is actually feeling and what they really need and identifying less destructive ways of getting that. You don't need to tell him you think he's got anything at all--you can make him feel like he's not alone by just telling him he's not alone, because he's got you and you love him no matter what. Labels can be helpful when they help you to get appropriate health care, medication, interventions, accommodations--if you're in a place where that's not necessarily going to be easy to get anyway, then a label might not be the best top priority.
posted by Sequence at 4:10 AM on July 20, 2014

You know, I've had, over the years, a few people mentioning to me that they, or someone close to them, has problems like these and they've reached the point where they think they need a diagnosis.

And they do need a diagnosis, and even though an *accurate* diagnosis is usually difficult to get, I always urged them to follow through until they got an explanation that satisfied them. In every case, they were glad they did.

In a couple of cases, it turned out that the cause was a medical condition that could have been serious if left untreated any longer - not learning disabilities at all. If these people had listened to the discouragement they got along the way, like "it doesn't matter what the label is, just be a really nice and caring person to them" or "people like them are just difficult/it's not out of the ordinary" or "diagnosis is too expensive/difficult to get anyway, and nobody's going to treat them even if they do get diagnosed, so just forget about diagnosis" then those people might be dead or seriously ill by now.

In other cases, persistence led them to a treatment regime or just a level of self-knowledge that greatly improved their lives, all as a result of accurate diagnosis.

Now maybe one of these days, I'll encounter someone whose diagnosis is just "that's their personality, they're just weird" and the day that happens, I'll find out whether it improves their quality of life or not. My guess is that knowing the truth is always the best thing, but we'll see.

In the meantime, I have yet to encounter one person whose pursued and received an accurate diagnosis and NOT been better as a result.

I do appreciate, OP, that if you get a diagnosis for your brother, and your parents don't take it seriously and don't follow advice about how to handle it, that would be bad too. But that isn't a reason not to try to get a diagnosis in the first place. If your parents react unhelpfully to the diagnosis, that'll be another problem to deal with; but one thing at a time.

Full disclosure: my aunt, who is now in her seventies, was considered "mentally ineducable" as a child and was going to be put in an "asylum" as a result. My grandmother could not believe this, and she pushed and pushed until she reached the end of the line, and her final showdown was with the highest medical authority in the land. He asked her something like "what will you do if I tell you that actually, everyone has been right so far and your daughter really is mentally ineducable?" And she replied, "Well, if that's what you say, I will have to accept it, because this is the end of the line. But I'm here because I want you to take this seriously." And he did, and it turned out that my aunt's diagnosis was dyslexia, the very concept of which was virtually unheard of in 1930s/40s, impoverished, working-class Britain.

Did that diagnosis matter to my aunt? You bet it did. If she'd gone into "an asylum" she probably would have died long ago and she would never have had any hope of living the life she did, which included becoming a nurse like her sister, and now serving her community as a Franciscan nun (and writing sermons regularly, albeit very slowly!).

OP, you have a strong feeling your brother might have some kind of medical condition; you have a Child Neurology centre near you; so if you think investigating this is the right thing to do, go for it, even though some people don't think it's necessary.

And if there's nothing diagnosable going on, it's worth knowing that too.

Your brother is lucky to have a sister who cares this much about him. Good luck!
posted by tel3path at 5:35 AM on July 20, 2014 [5 favorites]

I wonder if you can find safer ways for him to blow off steam when he comes home from school. What's his motivation, there?

Is it pent-up physical energy: would a backyard trampoline help? A pogo stick? A punching bag? A bouncy ball?

Does he need to throw things, in which case he could have a bucket of water and some of those big sponges for washing cars, and he could watch them splat against a wall?

Or is it the destruction, and you need to find something safer / with fewer flying splinters: I don't know what that could be, eggs could be great but would get messy and expensive. Water balloons?
posted by The corpse in the library at 7:15 AM on July 25, 2014

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