DS being assessed for ASD/Aspergers - started clothes chewing?

[ALMummy]

DS is 5 and just been referred to a Child Development Team for assessment - think possible AS. He has just lately started to chew his coat sleeves and bite his bottom lip - leaving it very chapped and sore. When I picked him up from school the other day he had been chewing his t shirt collar and looked he was wearing a big saliva bib. He has never really done this before. He does seem a bit more stressed than usual, a bit edgy and niggly. In your experiences do your children do this more when they are stressed, could there be something going on? He does talk and converse with us quite easily but it is impossible to get anything out of him if he doesnt want to talk about it. He visibly relaxes when he comes home.

What in your experiences are the triggers for this sort of thing? Also DH and I were talking last night and we agreed that we have noticed that for weeks at a time DS seems completely fine and then for a week or so seems to regress and all his symptoms come to the surface and after a week or so he is fine again. Anyone else experienced this. I dont know if I am coming or going half the time . It is so hard to know what is REALLY going on with him. Any ideas or advice would be gratefully received.

DS chews his school sweatshirt sleeves until they are ragged; but doesn't chew clothes at home. He chews them in assembly, especially if he has answered a question - ie been a focus of attention. He is dx asperger's and the moods seem to flow like waves - we call it 'the storm before the lull' as it seems to happen that way round!
Bottom lip is always chewed and swollen - he'll never need Botox!!
When he's really stressed we try to make sure he has as much downtime as he wants after school, and keep the home routines tight. Any change in the school day is enough to cause meltdown.

Well, i'm not sure about triggers as DS (4.4) tells us nothing !! (although has good vocab etc), but he was diagnosed with AS yesterday and he is a big chewer !!

He chewed a hole in his coat last year and has done 2 this year. He often soaks a top right down the front through chewing the collar.

He doesn't always do it though and i'm not sure what triggers it or if it depends on what clothes he is wearing, i.e. is it stress related ? Or sensory ?

DS also goes through phases where he seems fine and I think I have imagined his difficulties/symptoms. I asked about this yesterday at his diagnosis meeting and the profs said that it's widely acknowleged that the only consistency with Aspergers is that it's inconsistent...

HTH.

Thanks for your responses. I keep thinking to myself that maybe he isnt ASD or Aspergers and just needs more time but more and more little things happen and I know deep down that he is. He has chewed a big hole in his coat sleeve so we will have to buy him a new one, now in March (grrrrr). Never mind.

Catok - same as you, we just completely leave him to himself when out of school and let him do his own thing, it helps him calm down quite quickly. He is not really a slave to routine, I think he struggles with the responsibility I think of having to conform.

TM I read your other thread. I hope you are feeling ok today. Your DS sounds similar to mine. Sure I will be seeing you around on this board because I think we are here to stay also .

DS1 (6) isn't diagnosed with anything but has AS traits. He has just started chewing too - and it comes in waves as you say. When I asked him if he was worried about anything he looked at me as if I was mad and said 'Nothing like that Mum - I just like the way it feels'. I think it's more a sensory thing than anxiety - he does it when he's concentrating on something else.

One of the main reasons we haven't had DS dx is because we can go for months with pretty much 100% NT behaviour - and then have a week or two where he displays more AS traits. It sounds like this is normal from this thread! Certainly we haven't ruled out getting a dx in the future. Interestingly, the NT periods have become longer and the AS bits shorter as he's got older.

I mean that chewing is a sensory thing with DS1 - didn't mean to suggest it was never stress related.

Ds used to chew his clothes a lot but now 12 it has decreased. He still does though when reading, I dont think it is stress for him, more a comforter. He still chews pens a lot toothbrushes and flannels, straps of rucksack.

He is dx AS and also I notice has long periods of not appearing AS at all, then a huge outburst. The level of AS behaviuor stimming, chewing , difficulty with transitions and changes has definately decreased as he matures.

My Ds grinds his teeth not the same but I give him a chewy tube which really helps.www.kapitex.com/dysphagia/chewytubes-range.

Thats reassuring Sphil. DH keeps saying to me that we should not rush into a diagnosis because DS is not displaying traits for longer and longer periods all the time. He does struggle at school though and I cant stand to think of him being labelled the naughty kid because of something he cant help so I think diagnosis would help with that. Its a long waiting list here for assessment though so thought it was better to get the ball rolling.

He NEVER tells me anything though, have to ask a million questions to get anything out of him and it has to be just the right question and then I wonder if I am leading him to that answer. He probably thinks I am nuts . He only really seems happy when he is with us or his grandparents. I just hate thinking of him unhappy or stressed at school.

AlsMummy - DS1 struggled at his old school (Reception and half of Year 1) and tbh if we were still there I think we would probably be going through the dx process by now. His current school just seems to suit him better, though I still have an issue with the sporadic help he gets with motor skills.I guess I'm unsure whether his AS traist have lessened because of maturity or because of school (they're very much into personalised learning, finding each child's individual style, reinforcing success etc.)My criteria for seeking a dx has always been 'will it help him?' and atm I think not - but decision is constantly under review!

There is an old thread on Education called 'Dreamer of dreams...' where lots of us with 'quirky' cildren on the edge of dx used to post. It seems to have died a death now, unfortunately, but you may find some of the posts useful. Set yourself an hour or three aside though- it's a biggie

DS2 who has an unnofficial DX of AS doesn't chew his clothes but his older brother who I suspect has a sprinkling of AS traits started to do this when he started school, he also bites his nails right down, again only at school, on the other hand, the worst clothes chewer i know is supposedly NT! On the question of diagnosis, we have decided not to pursue a DX unless DS2's development plateaus for a long time or goes down, two of my friends, one a psychiatrist and the other a clin psychologist unofficially advised me not to as DS2 is relatively mild, they felt it could be a negative thing in the future! All my sons have good phases followed by evil phases (never all at the same time) it can really affect your quality of life, but I think all kids do this and it is hard to tell what sets it off, could be tiredness or a growth spurt or new work at school or boredom IME.

Thanks Sphil and allytjd. You have really given me something to think about. My DH is very much for not pursuing a diagnosis because he thinks the traits DS shows are something that are going to affect DS greatly when he gets older - almost that he will grow into it - IYSWIM. If DS is AS - it is very mild. TBH when concerns were first raised at his nursery we did not pursue it because we honestly had NEVER noticed any problems at home with DS - just thought he was a bit quirky and we always describe him by saying "he is his own man" and would come on in his own time - that has always been my instinct and I dont think I am in denial. I dont think that if he was assessed that they would diagnose him with anything anyway, he just doesnt really fit the criteria as far as I can see. Thanks for your posts, they have actually made me start thinking that may be we could be a bit more flexible about this.

sorry not going to affect DS greatly when he is older

Dunno about the chewing BUT the 'fine for a few weeks and then regressing' Oh Yes. Bell rang. DS1 has always been like this. Just as I'm thinking 'Oh he's doing so well, and is so mature,' etc,etc, BAM for no apparant reason he starts squeeking and being 'quirky' again. The only good think now he's older is that I can tell him.

He wanted to go and visit his old school (his Inset day) and has been asking to go so we went. Got there - all fine but he's developed this hand wringing thing and while he is talking (not making any eye contact although we discussed it) he's hand wringing away. Its all anxiety. Once his old LSA had whisked him off and he came back he was fine. We had talked about the wringing and eye contact before we went but the anxiety just takes over poor love, even among people who love him to bits.

Best wishes

Hi almum can I ask you about your ds little quirks my ds is in nursery he will be 4 in july and the teacher has asked for us to get a referal. They say its nothing serious he has his quirks too and we just think he will grow out of it but its always at the back of my mind.

Laughalot - where to start?

He doesnt really relate very well to other kids, prefers the company of adults. Just doesnt click with kids, like he tunes them out.

Finds it hard to focus and will only get involved in stuff he is interested in.

Apparently his speech and play is quite repetative. He doesnt really use his imagination when playing in the way that I would expect, however he can be helped into doing that if you give him some ideas. He used to have echolalia but that has stopped now.

His motor skills arent the best. He never really rode a trike and is not confident on a bike with stabilisers yet? Scoots like a pro though.

He has terrible melt downs sometimes if things dont go his way. I always know when they are coming because he goes all pale with red flushed patches on his cheeks.

He is the kindest, most gentle little boy you could imagine. Very sensitive to moods in people he cares about but I dont think this is considered usual in a 5 year old.

We also were advised to ask for a referral and have now but we left it for about 8 months to give him time to come on by himself. I am still not convinced that its a great big problem but we have gone for the referral because it takes a long time to get the ball rolling. What are the nursery saying about your DS? I have found this board invaluable. I was so scared and worried about DS when this was first raised and there has been so much great advice on here. I have spent nearly a year constantly watching DS trying to detect "traits", one minute convinced he is fine and then others being sure there is something. Has been a difficult time but feeling a lot better about things now.

Hi ALmummy
my eldest son is 9 and he has been diagnosed with Pathological Demand Avoidance Syndrome (a pervasive development disorder like autism and aspergers syndrome) and he chews the collars etc on his tops, and he also bites his nails (fingers and toes) - he also strips off his tops if possible and seems to dislike wearing anything on his feet, shoes or socks. My youngest also has just been diagnosed autistic spectrum disorder and the last post where you described some of his "issues" sounds very much like the behaviours that one or both of my kids have displayed at some point or another. (and I have heard many of my friends/ neighbours kids say "well I know someone who did/ does that and they are normal" - of course but the issue is the number of odd behaviours and frequency that is issue!!!! )

One thing I wanted to say about your DH's belief that your son will grow into it so doesn't need a diagnosis - well I would ask him to consider why so many kids are diagnosed later on, particularly in the "teens" with aspergers syndrome or autism - obviously they have not grown out of it and at this time when social relationships become more important this may cause even more stress and perhaps more unacceptable behaviour and the kids are often labelled as wierdos/ troublemakers/ geeks anyway with no one understanding or supporting them. I believe that if you get a diagnosis earlier then you have some time to help your child with learning social/ communication skills and to get the support from education medical system to enable you to do that. I am not saying that things will be 100% and issues will not crop up but you will understand why your child may react differently to certain things and can help others understand too.... My eldest has been assessed since age 3 and supported since starting nursery and he has needed this, esp. in terms of his emotional/behavioural needs and I have noticed people react differently when they know he has a condition rather than he is just naughty (not everyone cares/ believes but most understanding)

I know a few people who's children have been diagnosed later/ are being assessed still and they seem to wish that things had been picked up earlier. Of course your DH sounds as if he is worried about your child being labelled all his life with something "negative" ...

do you know anyone adult with AS to ask what their opinion is? or there is a very good ASD forum which has a lot of adult AS members, who may be able to offer opinions, I can pm you the address if you like?

BTW: My DH comments on the kids strange behaviour but will not really discusses the kids diagnoses, and indeed with youngest seemed to dismiss it when he was being assessed. He has had 6yrs to get used to eldest having PDA, perhaps will take this long for him to deal with youngest having ASD.. I deal with all the stuff like school issues/annual reviews/ DLA applications/ medical appointments and it is hard so I appreciate being able to post in forums like this to release some stress and "talk" to others in similar situations.
Take care

Thanks crazyjimbob. Would like that address please.

Think my DH is going to be similar to yours. I spent a year dealing with the worry of this alone because he just would not talk about it or accept that there might be a problem and if I am honest that is the real reason that we left it a while before pursuing a diagnosis. I was wanting to do it immediately but he asked for 6 months and I suppose I hoped everything would turn out ok. Finally he is taking things on board and the other day he said to me that this was the most difficult thing he has ever experienced or had to deal with - not in a self centred way but just not knowing how to help or the best course of action, I felt like saying "Yes I know pal, I could of been doing with a bit of support over the last year when I have had to deal with the idea of it alone because NO ONE would accept there might be a problem." The only good thing is I am a year further on so have accepted it and am moving forward in a much more practical way, looking for diagnosis etc. DH just does whatever I say we need to do now, about time .

Thanks for your reply. This board has been a life saver for me and I honestly feel has gone a long way to helping me accept things as they are. So many people on here with much more serious situations and also so many with similar DC. It just really helps to know that.

Hi, having trouble with pc being really slow so just a quick post to say that address is
www.asd-forum.org.uk/forum/

Glad your DH is starting to take it on board. hope you find something useful in the other forum and let us know how things are going.

www.asd-forum.org.uk/forum/

tried to post as a link - hope it works!

ds2 and 3 both chewed collars- ds3 is nearly 9 and really i'd say for a few months has stopped chewing- but he has gone back to picking nose...seems has to do one or the other- and i hate both!!!

all my 3 ds's have ASD and all still chew toys and favourite being playstation controllers....eldest is 14 (!!!)

ds2 is a button chewer.

ds3 went through a phase last summer of chewing VELCRO of all things- he liked the squeaky sound it made on his teeth-even the mere thought of chewing velcro makes me sick!!!

ALMUMMY...i totally understand ALL you are feeling.

Last month i finally voiced out loud what i have felt like for ages:
"I am NOT a MUM"...."I am a TEACHER".

Occaisionally i have 'warm fuzzy mumsey moments'...but few of them1 Whereas when i 'go into teacher mode' i feel stronger and though not quite the same as the 'mumsey' warm fuzzy feeling....i do get some pleasure.

like you, i see mumsnet as a lifeline- though nowadays i rarely get chance to post- so keep coming on here with any thoughts or worries you have.