DD has her test for Asperger's tomorrow........

[siblingrivalry]

.....and I'm scared I might start crying or totally 'lose it' with the doctor.

The last few days have been complete hell. DD1 has had numerous tantrums and crying fits, has been totally demanding and generally awful to be around.

I feel totally crap whinging like this, when I know that lots of MNers have dc with much more severe needs -I really don't want to come across as tactless.
Just don't know where else to turn. Nobody I know in RL has a clue how emotionally and mentally draining she is at the moment.Most importantly, though, I am worried sick about her and how she must be feeling.

Her tantrums are starting to become more frequent in public, too - four in the last 3 days; usually over telling her it's time to go home/she has to share her DS game;etc.

I have a feeling we won't get a dx tomorrow -the doctor said last time that her social skills were 'too good'. Of course, I'm not wishing a dx onto her, but I'm terrified of coming away with the doctor claiming it's anxiery-related. Where does that leave DD;my instincts tell me it runs far deeper than that.

That's why I'm scared of my reaction. I already feel at the end of my tether and it won't help dd if lose control. I've never been confrontational or very assertive, but I feel like an elastic band that's about to snap.

Sorry for the rant and thanks for letting me get it off my chest.xx

sibligrivalry- Dd1 is 4.5 and dd2 is 2.5, Dd1 has always had problems and was sent to be assesed at 2.5 years, she had alot of phobia's and she was very piticular about evrything, she has been hard work from day 1, she started talking early and now reads at the level of a 6 year old, as i said before, in the past year she has improved alot and alot of phobia's have gone, she is still sensitive to sound but she has learnt to cope with this. We hope we can get a DX for her this year, she has 2 assesments left as part of her full assesment. Because of all the hastle with dd1 we did'nt realy notice that dd2 was showing signs of ASD, she is very different than dd1, very laid back and easy to look after. We took her to our GP one day when she was unwell and he noticed her poor eye contact, hand flapping and poor comunication. We thought she was just behind, it turns out she is alot worse than dd1 and all the doctors suspect ASD.

It is hard work going through this with both of them but it seems so much harder with dd2 than dd1. I know dd1 will get on fine at school etc.. as she can comunicate and is very bright, dd2 on the other hand does not communicate at all and may have to go to a special school.

Dd2 was refered to a special play group last week that is 25 miles away, to get her there as well as getting dd1 to school i will have to give up my job which will be realy hard on us. She will also be getting speech therapy through SALT and the play group.

Mumsnet has been a god send, as you say its hard to talk to friends who don't realy understand what you are going through. I get fed up of people saying 'oh poor dd, what is Autism anyway?'. Its great to come on here and talk to others in the same boat, it makes you feel less alone.

Sorry for the long post

mamax4, thanks for that. I just feel gutted for you that you're instincts were right all along but the 'professionals' assumed that they knew better. Glad your ds is getting some help now though.
Good idea about filming dd too. I gave CAMHS a list of her unusual behaviours, but kept a copy. . just in case.
I would love to know more about ABA if you have time - haven't heard of it before.

Marne,my dd1 and your dd1 sound very similar. She is also very bright with an advanced reading age and many phobias;etc.
I don't know a great deal about toddlers with ASD, but it's still early days for your dd2. I won't tell you not to worry, cos I know that you still will but maybe, with your experiences with dd1, you are especially well equipped to help her.

I had a similar situation re jobs. My MIL was realy struggling to cope with dd1 so I ended up resigning - this hit us hard financially but I hated my job anyway so wasn't too upset to be leaving . I had loads of time off sick before I resigned. Just couldn't cope with the constant stress of work and the frequent phone calls from home. I wish I had a solution for you - am here if you need to talk.

Bubblagirl, hope your ds is feeling better soon. Don't you need the patient of a saint when they are poorly? DD1 is a truly awful patient!
Thanks for the reassurance re the dx. I suppose I just have to trust in the 'experts'
Am ok today thanks,apart from feeling at MIL. Apparently, dd isn't 'that bad' and 'we all have routines and little quirks. I have to open the living room window before I make a cup of tea every morning. Are you sure you're not getting carried away?' !!! FFS.
Bring on the chocolate!

Hi Sibligrivalry. I have been watching this thread with interest. My DS1 (age 5) was diagnosed with autism in June, though via a different route to you - mostly from parental observations and reports from a SALT and Educational psychologist. My feelings through the whole of the diagnosis process were similar to yours. There was relief, and then every time we had a good day I used to question the validity of the diagnosis, and then later I began to panic that if he was 'too good' then the diagnosis would somehow be withdrawn and he would lose the help he was getting in school (full time 1:1). It takes time to come to terms with it, and I still am adjusting but diagnosis has been a positive experience. The people that don't or wont understand tend to fall by the wayside and you find those special friends that just accept and don't judge. I find I am now relaxing as I am not making excuses for my DS's behaviours any more. The people closest to us have been the most difficult. My MIL is in overdrive and reading everything she can, my FIL has never spoken a word about it, and my own dad understands DS really well but is too upset to deal with it. Mum is great. My brothers choose not to talk about it to me, and seem generally very judgemental about Ds's behaviour. In a way none of this matters - I am now confident to deal with my Ds in the way that is best for him and it is strangely liberating.

I have euphoric days where I am so proud of him, and I have days where I hit rock bottom. I also feel very privileged that he has shown me a new way of thinking and I am a much better person for that.

I love this board - it makes my family life seem absolutely normal, when friends around me NT children just don't get it.

MN and chocolate - a great therapy! ( I,ve put a stone on since the diagnostic procedure began)

Thanks, your MIL sounds like my mum, she always says theres nothing wrong with my dd's and how they did'nt have names for things (such as autism) in her day.

I'm lucky to have got the dd's refered at such an early stage and i hope dd2 improves like dd1 did. Today she held a toy phone to her ear, she does'nt usually use her imagination or play with toys unless she is lining them up.

Marne, at dd2 holding a phone to her ear! I can imagine how pleased you must be. LOL at your MIL saying they didn't have names for things in her day -mine said that too this morning.
I think DH has some AS traits and MIL said he spent hours as a child lining up toy soldiers and cars and he hated to get his hands dirty and was a 'really bad mixer'.
Apparently, though, he was 'just a fussy kid'.
Keep me posted about how you are getting on.

Widemouthfrog, you have echoed my thoughts about the dx process exactly. I never thought I would be worrying that dd wouldn't get a dx; it's all so new to me atm.
The stuff about your family is really interesting, too. I am seeing all sorts of reactions-from denial to over-reacting (my mum is thinking of the Dustin Hoffman character in Rainman, I'm sure. Had words with her already!) I can definitely see people I have thought of as friends falling by the wayside. Very few people seem to know what to say.
I've also put weight on, but for once I just don't care

Rainman - wait for everyone to start asking what DD's special talent is! 'Aren't they good at painting and maths and have a photographic memory?'

yes - weightwatchers just seems a whole lot less important than it used to in the grand scheme of things.

LOL. My mum already said 'they are good with numbers you know!'
Erm . .who are 'they'?!
Do you find you have to try to keep your sense of humour or you would cry?!

Just a bit of an odd subject change, but was thinking about something that happened with dd. Can I ask if it sounds familiar to anyone else, please, cos it has been playing on my mind? It's a bit long-winded . .sorry!
Just before the holidays,dds class was doing a project on snails, so we let dd 'catch' one and take it to school for the day. It was in a ventilated container with leaves;etc. At the end of school that day, dd asked if we could keep it another day and we agreed. On the third day, we found the poor little snail trying to squeeze through a gap in the container and so told dd it was time to let it go.
DD freaked and had a huge meltdown. I told her that the snail was missing it's friends and it was bored and needed more space. She still refused to let it go, so I told her that it wouldn't survive very long in the container. DD said 'I don't care, I'm not letting it go, I will be too upset.'

Given that dds worst problems are with flexibility of thought and empathy, do you think this sounds normal (on an ASD scale). I was quite disturbed at the time.
We let the snail go,BTW.
Thanks.

We are starting to think Dh may have AS, we always thought he had OCD as he likes evrything in its place and spends hours cleaning.

Yes alot of people think of Rainman when they here about AS/ASD (goof film though)

yes, very normal on the ASD scale. I can see several issues - lack of empathy, the fact that she did not make the decision to let it go herself, and the fact that you used an explanation using concepts that she probably finds difficult (friendship and boredom). My DS actually thrives on being 'bored' as he can have is autistic time.

Thanks LeonieD, if only dh would pursue it, he has suffered with depresion for many years and has always felt misunderstood so it would make sence. He seems to understand dd alot better than me.

i find with my ds choices work for everything

so if that was hte situation with my ds with the snail no point me trying to explain as he will get upset too many words not understanding what im saying so i would say mummy put it in the garden or bubblaboy and repeat until he makes his choice and its always calm as he feels in control

i cannot rationalise so i have to do choices for everything but it works keeps balance going and calm

his feeling much better today still very whiney but overral wanting to play and communicate today

will put him to bed soon though as still very tired and thats when the real work begins different child altogether

ive had the whole it doesnt come from our side of the family, dont you think they'll just dx anyone these days its like a fashion

theres nothing wrong with him , dont make exscuses for him as normal toddler behaviour , make sure you dont exscuse normal behaviour and blame on autism makes me

i'll try to explain situations and they dont even listen to me some look of she making it up or thats normal

eerr no its not

do try the choice thing as if he doesntwant to do something i will say mummy do it or bubblaboy and he will make the choice

doesnt work for all but its been great for us does help when you feel your blood temp rise lol

Marne,
This is the trouble - most of the diagnosing people in the country are still using the boy's questionnaires, not the new thinking about questions that relate to the girls. Girls generally are better at socialising, which is why they get missed out from diagnosis because the docs expect them to behave exactly like a boy. Why would they?!

Amber, that's exactly what I've been looking into! There are whole different issues with girls and I think they can definitely be better at socialising etc. Why on earth don't thet do separate assessments for girls and boys then?

I wonder if my DH would consider a dx? He's also struggled with anxiety and depression and sometimes his lack of empathy is shocking. People who don't know him can perceive him as ignorant,too. He's also fanatical about cleanliness. Would actually explain a lot of the problems we have encountered over the years.
Leonie, I have accused him of emotional neglect many times.

Frog and Bubblagirl, it hadn't occured to me that not giving dd a choice about the snail and talking about concepts such as boredom could inflame the situation. I have so much to learn. I can't wait til the dx is complete and we can move forward and help her.

Thanks, appreciate the pointers. . am a total novice.

the choice thing just seems to be how i get through to my ds as they dont see something in another persons view only there own so long explanations mean nothing to my ds he gets worse so i have to basically be blunt and slightly forceful in my tone mummy do it or bubblaboy do it

he would still say no and moan and i would repeat it again so he knows there the only choices always chooses that he does it

as thats his fave thing bubblaboy do it no matter what i could be getting scorching item from cooker and he'll be screaming because he cant do it so then i have to do distraction as no point in trying to explain so find something he can do then praise for helping i find it defuses situation alot quicker

as i say whether it would work for everyone i dont know but it works for us we have such calm days on good days as i give his choices and distract and it last mins and were back to having fun

i have to say to him as his young and has no danger awareness i have to say he'll get ill if doing something dangerous as even attempting to say if you climb there you'll fall and hurt yourself means nothing so i say you could fall and get ill and he knows ill isnt nice

so it is about just knowing your child and there reactions and finding ways around it and having dx made me realsie his mind was different to mine so i had to find something that would work and as he likes to be in control the choices work as he gets to make it

i always say its not a bad thing as he is teaching me to see the world two ways instead of one

Siblingrivalry, they're starting to look at doing different questionnaires now. But it's taking time to get that info to the right people. It's like the questionnaires for adults who want to find out if they have any ASD traits that might need a doctor to check out, e.g. the AQ Test www.wired.com/wired/archive/9.12/aqtest.html which tend to ask if they like going to museums and collecting facts on trains and analysing number plates on cars.

Those are not gender-neutral things. A teenage girl would normally say no, she doesn't like trains at all. But she might collect every single teddy bear in a range and line them up and get hysterical if someone moves one of them. Or have shelves stuffed full of books on categories of dogs, cats, horses, etc and never realise that people don't normally fill their bookshelves with those or talking endlessly about the differences between horse breeds to increasingly bored friends. And she might like sitting in the garden by herself and pulling grasses to pieces, not going to a museum (which tend to be full of very scary things and often have flickering lights as they can't afford to change the bloomin' bulbs), so you end up with really factual answers that miss the point entirely.

PS I get 43 on the AQ test. 28-32 is borderline, 32+ means "oh yes, a diagnosing person might be very interested in seeing you".

Amber, I find your posts fascinating because, oddly enough, they seem to be the most convincing evidence that DD ISN'T on the spectrum! Doesn't lead me anywhere closer to a proper diagnosis (and I could live with ASD if that was the case as it's not like an actual diagnosis would change who she is!) and she might yet turn out to be aspergers, but there just seem to two or three key areas where she doesn't seem to act like the AS/ASD kids. Ah well, got a whole round of new medical appts come September so maybe that will lead us nearer to getting her some more help.
Sibling, I hope that whatever the diagnosis is for your daughter, it is the start of getting the proper help for her.

BriocheDoree, what sort of things are the ones that don't match, can I ask? I think what I actually mean is, what's your daughter like?

Most obvious problem is speech. Very like autistic child - can't understand complicated concepts, lots of echolalia (delayed and immed) and generally refers to herself as or . Gets very upset if you speak out of turn or say things in a different way to which you said them before. For example, a while ago I was trying to explain to her that she wouldn't see any trains on the way to school as there was a train strike: this is WAY beyond her so I limited it to saying "No trains today". She now has this obsession with there being no trains so will get very upset if I say "Look there's a train" to her baby brother. But she'll calm down within 5 / 10 mins and that's the closest she'll ever get to a meltdown (but it's very wearing, the way she tries to control conversation all the time). Very sensation seeking - can't keep still for very long, loves sensory stuff like playdoh, sandpits, rocking movements like a seesaw. Puts everything in her mouth. Motor skills generally good but perhaps a little behind for her age (4) as she can't ride a bike or walk downstairs properly. Draws brilliantly. Used to hate recorded music but will now tolerate it if it's on the same time as something visual (e.g. patterns on the computer). Socially inept / no empathy but loves to be in a big group (loves the city!). Completely unfussed by changes in routine and not given to huge meltdowns at all...
Long post, sorry. TBH she's my eldest and it took me quite a long time before I realised that she wasn't "normal" because I didn't know what "normal" was!

Oh yes, I forgot, she also sleeps OK, eats OK and is amazingly healthy!

Ooooo, I'm not sure either.

Leonie, my dh needs a lot of time alone too. I get frustrated as I have no help with the dc at all, apart from when he comes in from work.
I mentioned the possibility of looking at a dx for him and he's thinking about it.
He's the opposite of dd though (she doesn't like to be touched). DH invades personal space and is unaware of doing it.

Amber, your posts are so helpful -thanks. I have had a draining day with dd. We've been out visiting family and she frequently needed to 'run' - which is when she goes outside if possible and runs in circles; usually hand flapping and humming. Trouble is, it's been peeing down and she didn't want to get wet.
Also, I have just started to talk to my family about the dx of ASD. They don't see much of dds and I felt like dd1 was like a zoo exhibit today - they seemed to be waiting for her to do something 'quirky'
I'm finding new challenges everyday. Thanks for helping us to see things from dds perspective

Brioche- your dd sounds very familiar to my dd1 apart from dd1's speech is ok. She can't ride a bike, finds it hard to climb steps (often crawls up them on her hands and knees), hates change in routine and finds it hard to understand change.

Hmm, except that one of the things that stands out about DD is that change in routine is no problem for her (which certainly makes life easier for me). I think there's so many grey areas for all these things. The French call it TED which I think is similar to the American PPD. Pervasive Development Delay with no more specific diagnosis.
Sibling, I hope that your family take time to accept DD1's diagnosis. Everyone in our family thinks that mine has a speech delay and some of them refuse to see the difference between that and a language disorder. Can be frustrating!