Wee and other odd behaviours - please help

[szxmum]

I'm sat here this morning tired and despairing (too tired to cry)

 

Ds, 17, has gone off to Nurture group at school, so went into his room to clean (he doesn't like me in there when he's home - nothing wrong with that, typical teenage behaviour)

 

Well, his room stank of wee - my heart sank, not again. In early teens ds used to wet the bed, this progressed to getting out of bed and weeing on the carpet. This has now progressed to weeing in a cup and pouring it out of the window. Well due to poor motor skills this has ended up spilt down the walls and onto the carpet.

 

Now I have had a chat with ds about this, explained it is not acceptable behaviour - no arguments, no negotiating. He said it would stop. Ds was very embarrased, self-conscious and was aware it was wrong.

 

What is going on here? Why is the urge to behave in this way overriding the knowledge that it is wrong and unacceptable behaviour? It must be hell knowing that "normal" people don't behave this way and yet be unable to stop it. I just want to understand.

 

He also exhibits a whole raft of odd behaviours:

 

- He will not touch door handles and uses his elbows, arms, feet or pulls his sleeves over his hands - anything to avoid touching a door handle

- He will not open bottles, again he pulls his sleeves over his hands or he tries to do it with minimal conatct using one hand.

- His latest is not putting the tops back on bottles - we have had so many accidents with spilt juice

- He has to wear 2 pairs of underpants at a time and changes these 3 times a day. Socks are also changed three times a day - I am so fed up of washing underwear.

- He will only wear blue clothes (very, very occasionally white or orange t-shirts usually when there are no clean blue t-shirts left)

- He wipes his fingers on his trouser legs after eating - these usually end up covered in food marks after one day

- He will not sit on our sofas, sits on the floor all the time

- He continually washes his hands without drying them properly to the point they are red raw in winter

- He cannot stand a wet sink and will use towels and dish towels to dry the taps, basins and any other water droplets. The towels are then chucked into the bath. My towels are always soaking and if I'm not washing undies, I'm washing towels

- A tap is not allowed to drip, so the taps in our house are tightened to the point where you can hardly turn them on

- Plug switches have to be turned off - thank God, he will now leave the freezer turned on

- When we lock our door at night he leans so heavily on it to check that it is locked that the door handle is going to break - all this is done without touching the door handle of course

 

And then there are the quirky behaviours

 

- He collects the plastic ring tops of milk cartons - he has to have at least one in his pocket when he goes out

- Shiny, crinkly sweet papers are another favourite to be found in his pockets

- Yet another favourite for his pockets is shredded tissue paper

- Objects are positioned in specific places all around his bedroom

- Cables (of which there are a lot from his pc, Xbox, Playstation, etc, etc) are arranged into the most intricate patterns on the floor but they never ever touch one another

 

And so I could go on and on....

 

 

Can anyone identify with or provide insight with these behaviours. So tired today with it all.

 

As always, any input, thoughts or advice would be very, very gratefully received.

 

 

[lisac]

a lot of this sounds like my 22 yr old autistic son, i have no idea why he does these things, neither do experienced psychologists, there seems to be no rhyme or reason for these behaviours, only he knows but he is not letting on, you are not alone, huge hugs, x

[bid]

Best guess would be that as his anxiety levels are very high at the moment he is finding comfort, security and order in his obsessions/obsessive behaviour.

 

Bid

[Mum of 3]

Don't know much about this sort of thing, but reading down your list, it sounds as tthough your DS is worried about hygene. Is it possible that he's worried about touching the toilet seat to lift it up to wee, and has come up with another arrangement to solve that worry? I don't know what the solution is, other than showing him very clearly how the toilet is cleaned and reassuring him that this is done regularly. Maybe he's worried about splashing when he wees, so is reluctant to use the toilet for this reason? If so, he could be encouraged to wee sitting down on the toilet. Is his bedroom far away from the bathroom, so he gets so engrosed in his ps, games that by the time he realises it's time to go, he doesn't have time to do it. If so, maybe an alarm could be set to ring/vibrate to remind him to use the toilet every 2 hours or so.

My DS also wipes his fingers all over his trousers. He would rather eat with his fingers than cutlery, but doesn't like mucky fingers, and won't lick them clean, even though he'll eat hummous and yoghurt with them!! I give him a lovely, clean fabric napkin every meal and insist he uses it. This is easier with little ones, as I eat with the children, but maybe your DS could be given a clean men's hankerchief every day to keep in his pocket and wipe his hands on?

Sorry if these are all things you've already thought of.

[szxmum]

Best guess would be that as his anxiety levels are very high at the moment he is finding comfort, security and order in his obsessions/obsessive behaviour.

 

Bid

 

 

 

Wow Bid - you have rocked me back on my heels with your response.

 

 

He is good at the moment - so much better than he has been in the past - in our world his anxiety levels are low at the moment but these are his normal every day behaviours. When they escalate we know his anxiety is increasing, there is a problem and will lead eventually to tears, depression and panic attacks. In the past has also led to suicidal thoughts but please God we never go there again.

 

It has stunned me that an "outsider" thinks his anxiety leverls are high. Reading through the list, yes they are, aren't they. What have we got used to as a family? It just seems normal and every day for us.

 

Lisac, you have also stunned me with your comment that your 22 year old autistic son exhibits the same behaviours.

 

 

I am thinking of going back to our gp and asking for a referral through to someone who knows about Aspergers and High Functioning Autism, at present we are just on our own, in limbo (apart from you guys )

[Kathryn]

I agree with what others have said and can identify with a lot of this.

 

We saw a definite link between my daughter's anxiety levels and similar obssessive behaviour often suggesting a fear of contamination from germs. She refused to use any toilet except the one at home. She also used her sleeves to protect her hands when opening things. She stopped eating out in restaurants because she didn't like using strange plates and cutlery - previously she had enjoyed this. When we hired a holiday cottage she walked into the kitchen and asked where were the plates and cutlery that we had brought with us. When I said, a bit bemused, we would use those in the cottage just as we had always done, she reacted with surprise and shock as though this was a new thing to her. Carrying out normal bodily functions even at home was very stressful for her and I had the same thought as MUm 3 about toilet avoidance being the cause of your son's behaviour, as toilets are an obvious place to find germs.

 

We had things being switched off too and other obssessive behaviour to do with shutting cupboard doors, counting and touching things in a certain way.

 

My daughter was on medication for some of this time - I'm not sure that it really did a great deal to reduce anxiety, just masked everything. When we finally sorted out the educational issues and she felt more secure we saw a dramatic reduction in the more worrying behaviours. Although she still places a high priority on hygiene, it's within normal limits and she now happily goes anywhere and eats anywhere.

 

So a lot of what you list could be related to anxiety and this is his way of controlling his world. Some of the behaviour you mention above though, like collecting things or wearing certain things, could be part of AS and related to sensory issues. These particular behaviours may persist even when he is happy.

 

K x

Edited April 22, 2009 by Kathryn

[Tally]

Many of those behaviours sound OCD-related, and many of them connected with cleanliness. All the people in your house touch the door handles and bottle tops.

 

Could you maybe give him a napkin when he eats, to save the trousers.

 

Perhaps you could get a hanger for him to hang the wet towels, where they can dry off so you don't need to wash them every time.

 

A moisturising hand soap might help with the raw hands.

 

I think that seeking help with this would be a very good thing.

[chris54]

You could try disposable glove for your son. In the short term it might help with the hygiene thing.

[szxmum]

A big thanks to everyone yet again for your input :clap: What would I do without you all.

 

 

When we finally sorted out the educational issues and she felt more secure we saw a dramatic reduction in the more worrying behaviours.

 

So a lot of what you list could be related to anxiety and this is his way of controlling his world. Some of the behaviour you mention above though, like collecting things or wearing certain things, could be part of AS and related to sensory issues.

 

K x

 

 

When ds dropped out of mainstream 6th form we saw a marked decrease in the anxiety and OCD symptoms. I guess what is bothering me now is that the anxiety and OCD symptoms are still present. If I ask ds if he is happy, content, relaxed I get a reply: I'm good or "8/10 or 9/10 Mum"

 

Sooooo ...... what is causing this anxiety and subsequent OCD symtoms? Is this the AS ie just his normal state in trying to cope with / make sense of a world that he just really doesn't understand / fit into.

 

What are people's thoughts on this?

 

 

Thanks for all the input re: toilet avoidence and germs. It would make a lot of sense - think of me later on today when I have the conversation.

 

Thought of another question - out of interest, how do these phobias develop?

 

Sorry for so many qs - just trying to make sense of it all xxx

 

[bid]

A big thanks to everyone yet again for your input :clap: What would I do without you all.

 

When ds dropped out of mainstream 6th form we saw a marked decrease in the anxiety and OCD symptoms. I guess what is bothering me now is that the anxiety and OCD symptoms are still present. If I ask ds if he is happy, content, relaxed I get a reply: I'm good or "8/10 or 9/10 Mum"

 

Sooooo ...... what is causing this anxiety and subsequent OCD symtoms? Is this the AS ie just his normal state in trying to cope with / make sense of a world that he just really doesn't understand / fit into.

 

What are people's thoughts on this?

 

Maybe he is still anxious because you are still finalising the plans for his future, etc?

 

Certainly for me my general anxiety levels are kept down by having a monthly planner up opn the wall so that I can see what's happening and when. If you don't do this already, it might help?

 

Bid

[NobbyNobbs]

Thought of another question - out of interest, how do these phobias develop?

next time you watch tv, pay attention to the voiceover and images that go with adverts for antibacterial soaps, cleaning products, toilet cleaners etc. if you believe them, you'll think you're going to drop dead from touching anything anyone else has touched.

 

my current personal favorite is the advert for the antibacterial airfreshner you spray on the phone/toys/fridge incase someone sneezed on them!

 

society as a whole is obsessed with germs at the moment. some countries more than others (in america they have sensor paper dispensers in toilets, rotating toilet seat covers, toilets that flush without you touching them...), and for someone with AS who can be particulalrly sensitive to anxiety, the obsession is there, but the understanding that a cold is just a cold, and you'll probablyl get one whether you disinfect everything or not, might not be there with it.

 

 

[Karen A]

A big thanks to everyone yet again for your input :clap: What would I do without you all.

 

 

 

 

 

When ds dropped out of mainstream 6th form we saw a marked decrease in the anxiety and OCD symptoms. I guess what is bothering me now is that the anxiety and OCD symptoms are still present. If I ask ds if he is happy, content, relaxed I get a reply: I'm good or "8/10 or 9/10 Mum"

 

Sooooo ...... what is causing this anxiety and subsequent OCD symtoms? Is this the AS ie just his normal state in trying to cope with / make sense of a world that he just really doesn't understand / fit into.

 

What are people's thoughts on this?

 

 

Thanks for all the input re: toilet avoidence and germs. It would make a lot of sense - think of me later on today when I have the conversation.

 

Thought of another question - out of interest, how do these phobias develop?

 

Sorry for so many qs - just trying to make sense of it all xxx

 

Hi.I do not have AS as far as I am aware however I have suffered from anxiety in the past and have developed obsessive behaviours around cleanliness and other things.One of the things I have realised is that even when the anxiety is much better the routines can become so entrenched that they do not just settle as the anxiety is reduced.It is as though the patterns become habitual.

In my case the phobias developed because I was anxious.I started to do particular things as a way of coping with the anxiety.The difficulty was that the list of things that needed doing increased and the level of anxiety if for some reason I was not able to do them increased.I ended up feeling that the only place where the anxiety was manageable was the kitchen and the kitchen floor had to be washed if there was the smallest possibility of dirt.I was washing the floor at least three times a day.I now know my OH found it extremely stressful because he spent so much time and energy attempting to fit round my ever increasing routines.At the time our boys were both under five.

In my case it is most likely that I had PTSD however I think some experts believe that there is a genetic tendency towards anxiety and phobias.Ben also has some of the issues you mention on the list however he does have AS so it is difficult to decide which things might be AS related.Karen.

 

[Kathryn]

Maybe he is still anxious because you are still finalising the plans for his future, etc?

 

 

This is possible. Although he is free from the pressure, he's still going into the school isn't he? Even if the environment is now a supportive one, just being in the building may constantly remind him of the time when it was "a hellhole on earth" I think you said in another post. I think you also said he still doesn't like being around groups of young people? So the memory of what happened may still be very strong. He may be worried about the impending diagnosis. He may be worried about what he is going to do from September onwards. And as you say he could still be trying to make sense of the world and where he fits in - a foreigner in a strange land.

 

My daughter is still processing what happened to her at school and it's only fairly recently that she's been able to talk about it in a constructive way. It tends to bring up feelings of anger rather than anxiety nowadays, but she hasn't forgotten.

 

Many people with AS cannot live with the level of uncertainty that others are able to take for granted. You may find once the pressure is completely off him that you see another reduction in the obsessive behaviour eventually. Of course I don't know your son and am speculating based on my own experience with my daughter. One thing I learned though, is that there is usually a reason for the most bizarre and seemingly illogical behaviour if you look for it.

 

K x

 

 

[smiley1590]

i know that AS is common to have obsessions as that what wraps around our condition it's main part but what you desrcibed above are most signs of OCD you might need to get help and support from someone and he may needs meds and treatment for this! as can get 'out of control' and slip in as part of what he thinks is a normal healthy routine and links into his behaviour pattern do you get help and support with him anyway?? down to autism?? OCD is something you should look into further and research! hope this helps you maybe seeing adult Mental Health Team or CAMHS it depends ou your area and his age! i'll put some links on OCD but like any other Mental Health problems (depression,anxiety) OCD can also become common and heightened in someone with Autism! not unusual whatsoever i know few people on net with both so many things AS overlaps with anyway does he already have any other Mental Health problems? or see anyone for it if he has or take meds of it?

 

http://autism.about.com/od/medicalissuesan...sm/f/OCDFAQ.htm

 

http://www.asdfriendly.org/board/index.php?showtopic=13752

 

 

 

 

[Thompsons]

Has he been diagnosed with OCD at all? Most of these (with the exception of one or two) sound like OCD - I completely understand. I have severe OCD and I do a lot of these things, so while they do seem a little bit odd, please know that he's not alone with these things. I have cognitive behavioural therapy once a week to try to help me with these things, maybe it's something you could look into? As for medication I'm not sure. I take two prozac a day, but it has no effect on my OCD whatsoever - I was told this may be because the OCD has been heightened because of the aspergers and so it seems to be almost immune to medication. I really don't know the cause.. Yes, mine gets worse with anxiety, but it's something that is present EVERY single day - even when I'm feeling great.

 

Oh - also if he's washing his hands 'til they're raw, try and get him to put some sort of cream (E 45 maybe? It works well and it's odourless) on as soon as he's washed them if you can. My hands got so bad that they had to be wrapped in bandages because they were just like open wounds I really don't recommend letting it get any worse! Best of luck to you and your son <'>

Edited April 22, 2009 by Thompsons

[Suze]

Just wanted to reiterate the OCD behaviours everyone has mentioned, and also my son also has alot of these behaviours too.Are you sure he is awake when he is wee-ing at night??..........my son sleepwalks and we have to catch him before he wee,s around the house.

[szxmum]

Has he been diagnosed with OCD at all? Most of these (with the exception of one or two) sound like OCD - I completely understand. I have severe OCD and I do a lot of these things, so while they do seem a little bit odd, please know that he's not alone with these things. I have cognitive behavioural therapy once a week to try to help me with these things, maybe it's something you could look into? As for medication I'm not sure. I take two prozac a day, but it has no effect on my OCD whatsoever - I was told this may be because the OCD has been heightened because of the aspergers and so it seems to be almost immune to medication. I really don't know the cause.. Yes, mine gets worse with anxiety, but it's something that is present EVERY single day - even when I'm feeling great.

 

Oh - also if he's washing his hands 'til they're raw, try and get him to put some sort of cream (E 45 maybe? It works well and it's odourless) on as soon as he's washed them if you can. My hands got so bad that they had to be wrapped in bandages because they were just like open wounds I really don't recommend letting it get any worse! Best of luck to you and your son <'>

 

 

Ds has not been diagnosed with anything yet :wallbash:

 

We are praying that he will get a diagnosis of AS or HFA from the Ed Psych at school.

 

I went to see our GP last year and I was so distraught that I begged him to give my son anti-depressants - anything to relieve his suffering. He refused as ds was 16. I even said I would write a letter taking full responsibility for the administration of the meds but he still refused.

 

He referred us to Adult Mental Health Services who would not speak to me as my son was the adult and the patient not me Well ds told them what they wanted to hear as that is what he has learnt to do - keep below the radar, keep people happy, then they don't bother me and I don't get hurt - arrrggggg - sorry to rant

 

I am currently trying to find a GP in our area who is up on AS, OCD, etc, etc. Failing that we'll look at going private - best start looking out for things to sell - shame the old body's past it

[szxmum]

Just wanted to thank everyone again for their input and advice on this thread.

 

A quick update - had a chat with ds and yes he does have a germ phobia. He was very, very uncomfortable talking about it and became very anxious, angry and agitated but at least its out in the open now. The crux is the thought of germs being on his hands and this is driving his behaviours. I mentioned that we could go to the GP to try to get help with meds or CBT but he's not ready to take that step yet. So again, small steps - one at a time.

 

It was interesting to watch him today, the Nurture group had arranged for him to go on an outdoor venture activity - now he has done this before and thoroughly enjoyed it. His anxiety levels rose - perhaps excitement is a better word to use as this was a positive emotion he was experiencing but it still elicited a big increase in the OCD behaviours. He still had to perform quite an elaborate ritual before he left the house.

 

Although it is usual for him to complete riruals (behaviours) before he leaves the house, today it was noticably more and much longer but he wasn't negatively anxious and worried but positively excited and happy. Sooo, another question here, are compulsive behaviours linked to chemical changes in the body eg increased adrenaline in the blood?

 

Yet another question here - I get the sensory issue and understand that ds likes to wear old, comfortable clothes but why do all his clothes have to be blue? Can anyone shed any light on that one?

Edited April 23, 2009 by szxmum

[Mum of 3]

It could be something as simple as someone telling him he looked nice in blue...or maybe he thinks blue is 'lucky'. It might just be that it's his favourite colour.

My DH (who mainly sticks to only wearing blue! ) suggests: 'Does it match his eyes?' (blue matches his!)...'If everything's similar, you don't have to make any desicions about what you're putting on in the morning!'

[Kathryn]

For a long time my daughter would wear only red. She has branched out a bit but red is still her favourite colour.

 

K x

[Thompsons]

Although it is usual for him to complete riruals (behaviours) before he leaves the house, today it was noticably more and much longer but he wasn't negatively anxious and worried but positively excited and happy. Sooo, another question here, are compulsive behaviours linked to chemical changes in the body eg increased adrenaline in the blood?

 

Hmm.. I guess it's possible that compulsive behaviours are made worse by chemical changes in the body. My obsessions get worse if I'm anxious, and also they worsened a whole lot when I hit 13 and became a teenager. But, like I said, I have to do my ritual every day no matter what. I've always had a morning ritual, at least since I can remember (I remember doing it at 4 years old) and as I've got older unfortunately it's just gotten worse (I'm up to 5 hours in the morning Exhausting.) but I've never missed a day of counting and rituals as far as I can possibly remember.

Edited April 24, 2009 by Thompsons

[szxmum]

What I love about this forum is the generosity of people who are willing to share and support. I also love the "outside" observations - sometimes when you live it each day, you often can't see the wood for the trees!!

 

Your post struck a certainly chord Kathryn and got me thinking, were we doing the right thing maintaining contact with school, should we withdraw altogether?

 

 

This is possible. Although he is free from the pressure, he's still going into the school isn't he? Even if the environment is now a supportive one, just being in the building may constantly remind him of the time when it was "a hellhole on earth" I think you said in another post. I think you also said he still doesn't like being around groups of young people? So the memory of what happened may still be very strong. He may be worried about the impending diagnosis. He may be worried about what he is going to do from September onwards. And as you say he could still be trying to make sense of the world and where he fits in - a foreigner in a strange land.

 

 

Many people with AS cannot live with the level of uncertainty that others are able to take for granted. Y

 

K x

 

 

Well I sounded out ds to get his thoughts. We covered old ground, he was happy to attend the Nurture Group (this is a lovely portable classroom set out in the school grounds, decked out like a home) as this meant he didn't have to attend mainstream classes. He tolerated doing self-study for A levels as he didn't know what else to do and it beat the alternative of mainstream but he wasn't really motivated - he had chosen these subjects because the teachers were quiet, the classes were small and there was lots of traditional listening and writing - hiding behind books.

 

I then asked him what he thought about being in the same environment which had caused him so much pain in the past and would he prefer to leave it altogether? He thought about this and came back with an answer that rather surprised me - he said that although the school held negative memories he liked the Nurture Group classroom, he liked the two teachers, the support staff and the children who attended - they were all ages, no large groups and any bullying or intimidation was immediately stamped out by the staff. He also loved the weekly outdoor venture trip and got on very well with the venture leader "he has the same wacky sense of humour as Dad"

 

As I said, this conversation surprised me as I thought that given the option he would have "been out of there like a shot". On the back of this, I made an appointment to meet with the Nurture Group teacher yesterday and had an amazingly positive meeting - I'll start a new post later today as I just want to share that there are people out there who are trying very, very hard within the constraints of the system that they work in.

 

[szxmum]

But, like I said, I have to do my ritual every day no matter what. I've always had a morning ritual, at least since I can remember (I remember doing it at 4 years old) and as I've got older unfortunately it's just gotten worse (I'm up to 5 hours in the morning Exhausting.) but I've never missed a day of counting and rituals as far as I can possibly remember.

 

 

Thompsons, I hope you don't mind my asking but I see from an earlier post that you are on meds and go to CBT once a week for OCD. I also see from your profile that you are 18 very similar to my ds who is 17. Now I know traditionally girls mature earlier than boys but can I ask did you seek treatment for yourself or did your parents encourage you? I understand that treatment tends to be more successful when self-motivated.

 

Ds does not want to go to the doctors to talk about his OCD and phobias and I'm unsure if I should wait until he wants to go himself or whether I should be actively encouraging him to seek treatment.

 

Anyones thoughts / opinions on this would be gratefully received xx

[Thompsons]

Thompsons, I hope you don't mind my asking but I see from an earlier post that you are on meds and go to CBT once a week for OCD. I also see from your profile that you are 18 very similar to my ds who is 17. Now I know traditionally girls mature earlier than boys but can I ask did you seek treatment for yourself or did your parents encourage you? I understand that treatment tends to be more successful when self-motivated.

 

Of course I don't mind I'd really like to be of some help, even if it is only in a tiny way. The first time I was ever offered help was when I was 12, and it was recommended by my school. I had a little help, but I really just wanted to be left alone. When my Mum home-schooled me a year later, I stopped getting the help. Then when I was 14, I developed my phobia of swallowing food. So there was nothing left to do, but get some help for everything because I wasn't going to survive otherwise. My Mum got the help, but I did agree, because I knew I'd just waste away otherwise - I couldn't live in such fear anymore and not being able to eat anything, I was making myself physically ill and I hated being in hopital so much. But I really don't recommend leaving it that late. I should've had professional help from the time it was first noticed - I was two/three (I had major behavioural problems, but no one could work out what was wrong and my Mum was very young and wasn't sure what to do) because I've had to live with it by myself for so long it eventually all became too much.

 

So I guess maybe, the fact that I do want to get better is helping. But, I'll be honest, the thought of not having any rituals terrifies me. It's such an innate, natural thing, that I can't imagine my life without them. I've been in therapy for almost 5 years now and as you can see, the OCD aspect of my life still hasn't changed a great deal I do actually have an appointment with a new psychologist on Monday to see if she can find any new ways of helping me, so we'll see how that pans out. Maybe you could discuss the benefits of getting help with your son? There are plenty of positive things about it

 

[szxmum]

my Mum was very young and wasn't sure what to do

 

Thompsons, you are a star, thankyou for your post

 

I was an older Mum when I had ds, 27 - I'm now 44 and a lot of the time I'm still not sure what to do about so many things in my life but I give things a go - usually the outcome is what determines whether it was the right thing to do or not

 

When I find the answer to life, the universe and everything, I'll share it on this forum

 

Thanks again xx