Aspergers "tendencies"... any advise?

[flamesparrow]

Hiya,

My sister is HF/borderline or whatever the right term for it is Aspergers syndrome.

From day one my DD (3.6) has been very similar to DSis, and as she gets older she is seeming more and more like her w/r the aspergers side of things.

She does have empathy though. It is more the things like needing routine, order, things how she has decided/been told will happen - any wavering results in a complete meltdown.

I was putting it down to just a strong willed 2-3yr old behaviour, but as time is going on it is seeming different to that.

She definately isn't full AS, but I get the feeling she isn't completely NT either.

She is a lot better when I have her on a very strict non-processed diet.

What I'm really wanting is advice for making life smoother - to avoid the meltdowns etc.

I am trying at the moment to keep things to a strict routine, to let her know well in advance what will be happeneing when (and sticking to it), and just pretty much talking everything through with her first. Is there anything else I should be doing, or anything I can do to make life easier for her?

I remember my sister as a very very angry teen - ok, so a lot was hormone based, but I get the feeling that it was also down to not being understood etc (we only found out over the past few years) - I want to try and avoid that as much as possible for DD.

Thank you

Argh "advice" not adv0ise

I found that the biggest help at home with my two was using visual timetables. You have a picture or symbol for each activity that you have planned and put them on a piece of card in order. Mine was a long strip of card with a velcro strip to stick the symbols on with but they can be any way you like. Mine seemed to process the pictures much better than my verbal explanations. The timetable was also something they could refer back to for reassurance later.

Do you think she has any sensory issues? Disliking noise, bright lights, touch etc? If so then there are strategies that you can try to help reduce the effects of these.

My DS is like this... not AS, but the tendencies are all there. He takes after my dad, who had temper tandrums if routines were not followed, even when he got to age 70.

DS is now 15. The good side you have to look forward to - he has to come top in exams or he goes ape. He eats healthy food and is obsessed with what is in his food (my dad was like that too). He is easy to get up and out to school in the mornings as the routine is the same every day.

I find I must always tell him if a change is coming up. For example, if we book a holiday, I must keep warning him its coming up... counting down over months, then weeks. If its only mentioned casually in conversation he will go ape the night before the holiday and say 'holiday? what? since when did that get decided?'

He has very few friends - which I find myself worrying about. I worry what will happen when he has to go to university.

And my mum used to cope with my dad by dragging him out to social events, holidays, shopping as often as possible. Her theory was that if she left him to his routines and obsessions, he would slip further and further out of the real world. I think that worked for him.

I like the velcro visual timetable method.

She doesn't like anything too sweet, but apart from that doesn't appear to have any sensory issues (thankfully).

for your son and friends Moon - my sister was also short on friends (there was only so long they would tolerate her "attitude")... in later years though she seems have made a good group - adults seem more willing to accept her as she is.

i have a son with 'aspergers tendencies' (aged 9) ...just begining to go down the dx route.
Agree with themoon about warning lots before hand. Ds finds the first few days of a holiday very hard...not good when it's a fairly short trip and he doesn't have time to 'settle' properly...sometimes completely lays waste to weekends away.
Also agree with making him do stuff regularly...if left to his own obessions he would happily ignore the rest of the world.
Also...using his obsessions as rewards really helps...does your dd have something that you can use ? ds has always responded very well (obsessionally well!) to reward charts.

My 7 year old has a diagnosis of HFA, also known by our paed as Aspergers Syndrome.

OK, things to do- 1. make an appointment for the paediatrician via your GP;
2) have a look at the Triad of Impairments (easy to find on the net), see if your daiughter fits this criteria. Thsi si the system they use, as the aspergers children- and the autistic spectrum generally- isn't one size fots all. TYhink of it as a photo with a colour filter: the colour (aspergers) tints it all, but the picture (your childs personality) is still in there =, just tinted.

3. don't panic, kids with Aspergers and triats often go on to have wonderfully successful lives (think Einstein).

I ahve a book of stratgies I don't need any mroe, if you want to let me now where you are- peaches and cream 04 at bt internet dot com. Its a great book, basic simple ideas which really help. Happy to post over.

you can often buy the timetables on ebay

Hi Troutpout, you sound in a similar position to me as my ds has Asperger traits and school are now talking about getting a dx for him - though he has seen the ed. psychologist.

oh, I forgot, he is 10 (year 5 at school)

we were at Drs today & she gave me a good tip for older kids. Have a desk diary with usual day to day things in & whenever there's going to be a change in the routine cross out the day's activity with a big coloured cross & write whatever the new activity is, ie Dentist, holiday etc. Think this will be good for DS as he is so visual, especially if I can find a spiderman diary!!

wads ~ had your ds been dx?

no dx yet but defo AS or HFA. Here in Portugal you don't need dx to get school support or therapies, it's the dr who opens those doors. So altho' I don't much like our we have to keep seeing her - anyway as I said she did actually give me some useful advice today for a change. Let's hope she doesn't lurk on mn...

Found a good site with a really clear triad of impairments... and she has things from each area

I've spent the last 3 years telling myself that she is just a spirited child, and it is all normal toddler behaviour, but this past 6 months where she has been at preschool 5 mornings a week and she has become a proper "little girl" rather than a toddler, it has started to become more clear to me (possibly because I have always had in the back of my head how similar she is to DSis).

Would a GP or anyone listen to me yet (thinking as she is so young and it seems very mild)?

Wads - Get some spiderman stickers and cover the diary (actually DD would love that too - Spiderman, Carebears and Mickey Mouse ... she's got very eclectic tastes )

Peachy - will email you when I get home (at a friend's house).

flamesparrow ~ talk to your hv or gp. They should get the ball rolling.
Good luck xx

I'll go to clinic with DS next week and talk to the nursery nurse - I am relaxed around her and feel she will listen without thinking I'm crazy and obsessive... she'll point me where I should be.

I spent the afternoon giving her plenty of warning, properly listening to what the issue is rather than just putting her behaviour down to acting up (very very very upset about leaving a puzzle and sticker book thing - normally I would have put it down to her just not co-operating... turns out you have to do the puzzle and the stickers and we hadn't given her time to do the stickers. Promises and assurances that she could do them the next time she is there calmed the situation)... it has been a much more enjoyable day than we have had in a while

no probs flame, will look out the book for you

please don't worry, as well as my very ahrd to manage ds1 with a dx, my third child also fits the triad and is seeing the Paed next week, he's a lovely, adorable gentle little soul though. Kids with ASd and related syndromes vary so very much its uncanny. ds3 is probably the norm tbh, as longa s he has his routine and rules he's A1 (he's 3.5 btw).

Will look out for your e-mail

peachy that sounds like my ds3, as long as everything is ok in his mind, he is absolutely adorable, such a loving caring little soul, i still have no dx but have looked up on net for sometime and everything fits for as, has done for a couple of yrs although they are still not prepared to dx, but he is the same, very visual, and as long as he knows what is happening, he is normally a happy little thing, i think i may have to try this timetable idea myself, might be easier than spending days explaining whats going to happen lol, have read all those posts with interest, sparrow, just remember she will always be the little girl you fell in love with, i found it so hard when i realised that my ds3 wasnt the little boy i had thought he was going to be, but apart from the meltdowns, i couldnt have wished for a better little boy.

Thought I should give an update (peachy, I have cut n pasted the email I sent you - sorry for bombarding you with emails today, I needed to talk!)

I spoke with the actual HV who took notes and nodded lots, and when I said that I was alternating between AS concern and it just being my shoddy parenting she said hmmm in a way that implied she thought it was more like the latter!!! She had already told me I was looking awful so it?s a lovely confidence boost going in there I suppose I should be thankful ? she normally takes one look at me and hands me a depression questionnaire.

She said she will phone preschool to see what their view of her is when she is interacting with others her age.

I went to collect her and spoke to the lady who runs preschool, explained that she would be getting a call and why. She knows my family and about my sister, and I explained about all the similarities and my concerns, and she said that most of the time she is fine, but yes, she does have her ?moments?. I said that at home it is usually when things don?t go the way she expects (and its not just that they don?t go her way, she is happy for it to be your way, just as long as she knows its happening iyswim), and they agreed with me.

So, I?ve taken the first step?

Might wander off and cry into a cup of tea now! I didn?t know just talking to a hv could be so exhausting.

Hi, haven't got that e-mail yet, yahoo playing up (probably lines down, some trees down in Cwmbran)

Ok they always dio the crap aprent thing, years ago ASD was thought maybe related- completely disproved, probable gentic link. Somehow it hangs round like a bad smell. Also, loads of ASd kids have an amazing ability to behave in one (usually structured) place and then melt down at home, where it is less structured and they feel safer. Sam does that a LOT.

You need to see the GP and ask for a referral, HV's and their assistants bat around the houses for weeks but the quicker you go on that waiting list- you can always take yourself off if needed.

yo uou, know how you feel as the feedback Im getting from CM ? Nursery about harrys appt next week is really negative - I shall share a virtual cuppa with you if that's OK?

Virtual cuppas are always good

I don't know my/her GP very well - we moved house about 2 years ago and I've only seen the new guy about twice. There is another one at the practice who I really like, but he's not my gp iyswim

There is meant to be a parents evening this term so I will get a chance to talk to them properly about how she is - so far its just odd snatches here and there, and I can't get a clear picture. I know a lot of the time she is lovely - quiet, calm, concentrates... but she concentrates in a blocking out the rest of the world kind of way.

for your feedback

Spoke to SENCO and he might be able to delay school starting by a year and stay at nursery, which is excellent news! Yay!

Its hard if you don't know your GP, but they should take your concerns seriously nonetheless. Mine recognises me on the spot these days, but there seems to be a lot of empathy rather than anything else which is - we've only lived in Wales two years, so a short realtionship.

have you spoken to the NAS? Locally they can get someone in to visit you to chat about all sorts of things.

Yay!!

No, I still haven't contacted NAS . I'm still a bit at the stage of worrying this is like one of those threads like "my baby is 6 months old and still not talking - is it autism", and am worried about wasting people's time.

Haven't read all of this, sorry! Flamesparrow, you can ask to see any Dr at your GPs' surgery so ask for the one you like. Your GP is still your GP and the main point of contact but you can see anyone you want.

If your dd got an all clear tomorrow we wouldn't say Oi you wasted our time

we would say YAY!

Don't worry about that!