we are *desperate* for help with ds1, aspergers? anger issues? 'normal' stroppy 6 year old? haven't a clue and have reached the end of my tether...

[frazzledfairy]

dh and i are just desperate for help and don't know where to turn. i feel we are failing ds1 (6 1/2 years). we had a assessment at a childrens centre on friday for aspergers and although he scored -26 on a test they did that apparently if they get a minus score at all that is an indicator of being on the autistic spectrum, apparently he hasn't got aspergers because he has no obsessive tendancies and doesn't struggle socially (although he has had massive social probs in the past). he is reasonably empathic (for a 6 year old!) and understands literal humour.

it is probably easiest (and most likely to be legible!) if i list his 'strengths' and 'weaknesses'.

soooo.....

strengths

very quirky and funny
great sense of humour
amazing at reading/writing
extremely bright and articulate
can be very affectionate

weaknesses

no eye contact whatsoever
regularly switches off (is in another world and we can't 'reach' him)
has huge (yet fairly short lived) tantrums over the most obscure/trivial things
can be extraordinarily rude to adults
very poor spatial awareness
very messy eater
has soiling probs(is on movicol)
seems to lack confidence/be insecure

he is a jekyll and hyde type character, he has real extremes of happiness/anger/sadness.

the major issue for us is that we feel he isn't happy, doesn't feel secure and loved, and his anger is very hard to deal with. he goes through stages of hitting himself and saying he is stupid and he isn't important which breaks my heart

he has had a huge amount of change over the last 18 months. i was a single mum till sept 05 so since then he has moved house, changed schools, gained a daddy and got a new baby brother! all the changes have been positive, he is far happier at the new school and we have now own a house so no more moving around. he loves his daddy and adores his baby brother. however still alot for him to deal with.

he has always had poor eye contact and seemed very other worldly, untill recently he really struggled socially, he just couldn't seem to understand other children. however the anger thing is more recent, maybe started a year ago.

i feel slightly like i'm going mad, i just don't know what to do to help him. i hoped at the assessment the panal would say he was borderline/high functioning aspergers and help us.

can i just add he has no probs at school, his teacher has commented on his lack of eye contact and 'away with the fairys'ness but thats all.

we really need advice, tia

Hmm, our PAed told us that switching off in her opinion is epilepsy- unless its related to over stimulation then its ASD>

First off take a look at www.bibic.org.uk, they help su with ds1's anger issues a lot, he didnt ahve a dx when we went there, but is now recognised as having HFA.

\the anger is often frustaration, DS1 is a git for this as his IQ age is far over and beyond the level at which he can function. Further if they are having to work extra hard to cope with things (which might explain the apparent gain in social ability) then they can get very tired and emotional.

Can I recommend a book? this ; the techniques work well for all kids with AS style issues, imo (flamesparrow may be able to lend you my copy if you can find here on here)

Hi, I just wondered, does he flap his hands when excited or chew things (collars, books...anything!) or have any other physical mannerisms?
Is he well co-ordinated or clumsy?

The strengths and weaknesses you describe sound similar to my DS1 at that age.
He is dyslexic and dyspraxic.

He's amazing at reading, but not at writing though.

he is pretty clumsy and not well co-ordinated at all (although he can now ride a bike-very wobbly!).

he has gone through stages of clapping hands, making high pitched siren noises and repeatedly hitting himself when he is stressed, but at the moment does none of those. he has also gone through stages of chewing his collars but again is not doing that at the mo.

the other thing i meant to mention is he doesn't seem to (or doesn't want to) understand basic tasks and has an appalling short term memory (and an amazing long term memory!)

Your ds sounds fairly similar to my ds1 (HFA).

Re his anger: it might be an idea to start keeping a daily record/diary of what triggers this. Over a period of weeks you might start to see a pattern emerging.

Does he have any sensory difficulties? eg oversensitive or undersensitive to things like touch, noise, lights etc.

basic tasks being getting dressed, brushing teeth etc

The problems with dressing could be a difficulty with sequencing. Does he by any chance need you to keep reminding him to get dressed and then seem to forget what he's supposed to be doing?

My ds has Aspergers but has no obsessive interests at all and a great sense of humour (when not whingeing!) but the paediatrician explained that the repetitive movements - ie chewing or hand flapping - came under the same category. In your case I suppose that might be the hitting himself or chewing. I think a lot of children grow out of those as they get older.
Children with Aspergers and dyspraxia (which are pretty similar and often overlap)do tend to be clumsy and had bad coordination.
It is a tough one. Did you get any guidance at all about him?

My ds is also very bright but is EXACTLY as coppertop describes re dressing. Any tips coppertop? It drives us BARMY!

Yep Ct thats what DS1 does too- keeps stopping! the reminding drives me insane- frazzled have you got a visual timetable? this is the one we use with DS1, he gets a lot out of it, and it saves me from constantly reminsding (I have 2 other kids to get ready, one (ds3) who has classic ASD)

It can be ahrd to pick up differences between dyslexia, dyspraxia, AS etc- they're extensions of each other to a degree, and the same tactics seem to work with the different groupings.

Ds1 used to use a visual timetable with flaps on it. You arrange the pictures of the clothes in the order you want him to put them on. As he puts on each item of clothing he gets to lift the flap for that picture IYSWIM.

It worked well for a while but then the novelty of moving the flaps sort of wore off. I'm tempted to get it out again.

Did you make it Coppertop? That sounds really tricky!

Sorry to hear how oyu are feeling frazzledfairy!
I too have a DS who is 7 in JULY and oyu have explained him well! My DS is struggling badly at school with anger management and social skills BUT is a high acheiver in education. We see a doctor on monday for our initial assessment so not really sure what i can add TBH. Looks like we are both in the same boat though!! I have ordered the book linked on here because it keeps getting recommended! My DS has big issues with routine though and has also got a blinking problem (he blinks constant!)

"Does he by any chance need you to keep reminding him to get dressed and then seem to forget what he's supposed to be doing?" good god yes absolutely!

we didn't really get a lot of guidance, they told us the results of this test but said it didn't seem to fit with what they could see of him. i feel they spent a very short time with him (about 15-20 mins out of a 2 1/4 hour assessment) and he was very chatty and polite with them, although he made no eyecontact at all with them-i was watching! they showed him some pictures and asked questions like "why is the little girl sad that the cookie jar is on top of the fridge?" etc. they said they 'could' (???) give him a diagnosis but that would only gain him support in school which he doesn't need anyway (he doesn't).

the whole thing left us confusec and flattened.

Aloha - No, I wouldn't have known where to start with making one. It was given to us by the CDC staff. I'm guessing that there must be a simpler way of doing it. Maybe putting the pictures on a plain strip of card with velcro across it, then giving ds blank pieces of card to put over the top of each picture?

They 'could' give him a DX? Reminds me of our first PAed- 'its not as if I can treat AS so whats the point of a DX'- thank goodness we moved!

taht wouldn't only gain him help in school (no guarantee of that!) but it would give him and you an understanding of his differences and a foundation to build on.

there is an option of a private Dx (national Austistic Society coulda dvise) or the BIBIC route (doesnt give a dx but asseses all areas of ability etc and then gives you strategies for addressing issues)

children with this are very good at maths and art but cant catch a ball they seem to play in their own world and are made to be class clown by other pupils short term memory is common too

NO!

Some kids with this are good at maths and art but the generalisation is bollocks

You are describing my child Frazzledfairy!! My daughter 7 years old was diagnosed with Aspergers last week. I am having a follow up appointment in a couple of weeks time and I'm going to ask about help with anger/ tantrums, anxiety and low self image, among others.As I get advice on these things I'll post any interesting ideas we might not have thought of, if that's ok?!

The generalisations don't always fit. Ds2 (4) has AS but is very co-ordinated and things like catching a ball aren't really a problem for him.

I missed the bit about how they could give him a dx. Even if he doesn't need help at school at the moment, it's possible that this might change as he gets older.

Peachy - Laminated is definitely the way to go isn't it?

Laminated fab

The key to tempers is to locate the cause and whether theya re tantrums (all kids have them) ot meltdowns (SN specific and arising from overlaod generally).

Then you need to implement a combination of avoidance strategies and coping strategies, possible with ways of gradually building up tolerance to triggers, depending on what they are.

So, for ds1 he hates to be touched. He therefore has, in a controlled way and at home, techniques to help- gentke massage, using different etxtures, blowing with a plant spray- all things to reduce over sensitivity.

He also has had his room created into a 'sfe zone' where he can retreat: teaching a child on the pectrum tor ecognise overload is an extremely important task imo.

Have you looked at the triad of impairments of the NAS site? Its far better and more widely used than specific tests.

Digital watches, alarm clocks, visual timetables, sand timers, count down warnings, ear muffs, distractiona ctivities (eg a squeezty ball in a pocket) all have their place in dealing with ASD overload issues

yes that would be great thornrose thank you

does anyone have any thoughts on where we go from here? both dh and i feel we reaaly need help re ways to cope, and to understand ds's behaviour so we can deal with things better and try to reduce his 'stress' iyswim.

should we go back to the centre, or see the gp? take a tent and refuse to leave till they help us?

can you ask to see a different specialist?