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First appointment with CAHMS on Friday - am so nervous. Any advice please?

(49 Posts)
SIBLINGRIVALRY Wed 30-Jul-08 22:05:22

Hi,

I am pretty new on MN and haven't posted on SN before. However, I have spent the last month browsing the threads - particularly those related to ASD and AS. I have found them to be invaluable ATM as I have no experience of SN myself.

Basically, my dd1 is 7 and has always been what I would kindly describe as 'eccentric' with loads of quirky behaviour, fears and anxieties. However, about 4 months ago the quirky behaviour became more frequent,she started to have lots more tantrums and generally has become really hard to deal with.

School referred her to CAHMS (appointment Friday). I have only just started talking to people about my concerns. Previously, I tended to keep it to myself as I could see that people found her a bit odd at times and just didn't feel that they would understand. By 'people' I mean friends, PIL,and other mums.

The thing is, since I have spoken to dd's teacher and a couple of others -OT, paed nurse- the autistic spectrum keeps being mentioned. I am trying to keep an open mind, but the more I research it, the more things seem to click into place.

I feel so lonely and isolated and dh isn't giving me much support, so would appreciate some advice from any of you experienced mums.

If I give you an overview of her behaviour, would you give me your opinions please?. I know that you can't tell me anything for certain, but I just feel desperate to talk to anyone who has gone through this process. Thankyou in advance.

Here are a few of dd's 'quirks'. There are many,many more! :

She runs in circles , shaking her hands and talking or singing to herself.

She can't bear any tags in her clothes and makes me cut them out.

Eye contact with anyone but me,dh and her sister is very hit and miss.

Very poor sleep pattern.

She can't cope with any kind of change, no matter how small - usually will have a huge tantrum if she has to undergo change.

She is very bright -on gifted and talented register.

She is obsessed with dates eg when a programme was made; dates of birth.

Not great socially, she seems to have to 'control' play and frequently withdraws and goes off to play by herself.

And the list goes on.......!smile

SIBLINGRIVALRY Wed 30-Jul-08 22:43:20

Anyone around??smile

twocutedarlings Thu 31-Jul-08 00:37:02

yes that all sounds very very familiar, my DD has AS.

Everything you have said about your DD also applies to mine (and some other bits) other than the lables.

Is it an assessment for ASD that your going to camhs for. Try not to worry about it, if indeed your DD does have AS getting a diagnosis is not a negative thing its a way forward into her world and a learning curve of the best way you can help and support her.

Since my DD was dxd and we have learnt about AS she is a much happier child, we are no longer trying to make her normal!!(whatever that is LOL) but are working with her and helping her to live with her difficulties and differances.

misscutandstick Thu 31-Jul-08 09:36:42

must agree with 2CD, it does indeed sound nearer to Aspergers than ASD - and I think thats really encouraging, generally adults (and I know quite a few) tend to be a bit quirky, but have their few good close friends and become very independant and manage a happy life of their own well. A friend of DH's has just announced he and his wife are expecting, and although nervous hes looking forward to a new little person. My grandmother was an odd one (unDx AS), she had some very peculiar talents, most included counting and measuring, but she was extremely well paid as a wages clerk. I do remember as a child always having my chips counted grin but she was fantastic and I loved her to bits. I assume you wonder what your daughters future holds... i think it looks bright smile

misscutandstick Thu 31-Jul-08 09:40:34

im really sorry - just re-read your post, and i dont have any experience with CAHMS. but good luck, ive only heard good stories related to them so im sure it will be fine {hugs} XXX

SIBLINGRIVALRY Thu 31-Jul-08 10:09:52

Thankyou both so much for your advice and encouragement, you have really lifted my spirits. I woke up feeling sick with nerves amout tomorrow. You have both made my smile smile.

2CD - I too have been 'guilty' of trying to make dd normal and I totally agree that a dx would be a positive thing. I'm tired of trying to rationalise her behaviour to others,too. It's time to move forward -thankyou.

Misscut - I also have been inclined to think dd sounds nearer to Asperegers, thanks for your help. LOL at your anecdote about your grandmother- she sounds like she was quite a character.

We are going out for the day shortly. Think I might be a glutton for punishment at the moment - takind dds1 and 2 out shopping. hmm.

Have a lovely day.

SIBLINGRIVALRY Fri 01-Aug-08 16:24:15

Hi,

Just back from CAMHS and am totally p'd off. The doctor said that there's no way dd has Asperger's because her social skills are too good. However, there are a lot of traits and red flags for Asperger's??!!

She's being tested a week on Monday, because otherwise 'you will keep getting asked if she's been tested.'

I am totally confused and stressed. I'm not looking for an AS dx if there isn't one, but surely it can't be ruled out in a 30 minute meeting? I gave the doctor a list of our concerns and dds 'quirks', which she said she would look at later(?)
When I mentioned dds hand flapping at the end of the meeting, the doctor raised her eyebrows, scribbled a note and said :'Hmm, that's typical of AS.'

Has anyone else been in this situation? I know that these things can't be rushed, but how can something be dismissed without the facts?

Also, when I said how worried I was about how unhappy dd is at school, she said: 'I would just keep sending her, she must be okay once she's there or she wouldn't go in.'

DH came away happy; he thinks it's all sorted now and I'm being unreasonable. I'm sure he thinks I want dd to have AS. I just want her to get the help she needs, regardless of her problems.I'm starting to doubt myself.

Phew!!!! Sorry for the rant . . .am running out of steam now. Thanks in advance. smile

TotalChaos Fri 01-Aug-08 17:02:07

oh no how very frustrating. that bit about social skills is somewhat missing the point - as surely social skills with peers is rather more important than social skills with her doctor! is she going to be tested by the same guy you saw today.

SIBLINGRIVALRY Fri 01-Aug-08 18:46:01

Yeah, along with another doctor. I just don't know what to think tbh. Thanks for replying. Do you (or anyone else) know anything about the test they do for AS?
The doctor told me the name of it, but I didn't really take it in. smile

twocutedarlings Fri 01-Aug-08 19:51:24

Was the test her mensioned the ADOS or the Disco assessment?

Totally agree with you about the doctor not being able to get a full picture by spending half an hour with her.

You breifly mension in your OP about her social skills, how is she 1 to 1 with playdates ect.

My DD can be very sociable if she chooses to, but nine times out of 10 she prefers to play alone but is perfectly happy to.

SIBLINGRIVALRY Fri 01-Aug-08 20:04:22

HI 2CD,

The ADOS test rings a bell, I think. I'm not sure about the outcome if they think that she is ok socially though.

Like your DD, she can be very sociable and at times she can play 'normally.'
At other times though, she will literally ignore her friends when they are talking to her and run off to play by herself.
She can also monopolise a conversation so that her friends can't get a word in and avoids physical contact with the them.

She doesn't really like having friends over to play - she tends to withdraw after a while and asks if she can go upstairs by herself. When I hear her playing with her friends, she can come across as very bossy; she has to be in charge.

I know these behaviours can occur as a result of other problems, such as anxiety etc, so I don't know what to think.

How old is your DD? If you don't mind me asking, what are her social skills like?

twocutedarlings Fri 01-Aug-08 20:26:39

Hi,

My DD is 5 (almost 6) to be honest it is her social skills that are most effected, she plays really well with her younger sister (3) and has come on loads in the last twelve mths. but she rarely play with anyone at school.

Friendships that she has formed at school are more obsessions to be honest, she tends to get fixed on one particular child, and will not leave them alone. Other that her sister she will only play with boys girls just seem to be to complicated for her LOL.

Have a look at bonkerz recent thread for info about the ADOS.

www.mumsnet.com/Talk/1373/573441

SIBLINGRIVALRY Fri 01-Aug-08 20:54:01

Thanks very much for the link - very enlightening.

I agree with girls being too complicated though -the classroom politics in Year 2 had to be seen to be believed!smile

My dd2 is also 3. They can play really well together but dd2 is a bit too--in your face-- vocal sometimes and dd1 finds her overwhelming. Mind you, so do I!

I appreciate you posting, I didn't know where else to turn earlier. Thanks again.

AttilaTheMeerkat Sat 02-Aug-08 07:08:28

Siblingrivalry,

I don't think your concerns re AS are at all unfounded and your DH is in denial.

Would ask your GP to refer you to a developmental paediatrician at a child development centre. This person can make a diagnosis.

Have heard very mixed reports about CAMHS generally. Tsk at doc saying there's no way she has AS because her social skills are too good!.

With regards to school you may now want to consider applying for a Statement of Special needs from the LEA. Statements are not only for academic needs, they are for social needs too. If her school life is becoming difficult now it may get more so as she works her way through the school system.

misscutandstick Sat 02-Aug-08 13:51:19

If it makes you feel a little less like its a personal attack on you by your Doc, my sons Paed is exactly the same - hes totally in denial! DS5 is blonde haired and blue-eyed, and has the most gorgeous grin which makes his face light up! however when he does it, it isnt that noticable that he closes his eyes tight so he doesnt have to look at you while he does it!

I could mention another 20-30 'symptoms' including dietary needs, behavioural issues, compulsions, regressed behaviour, loss of skills, and lack of speech... But the Paed does his best not to listen and insists that theres nothing wrong. Even the SALT is convinced its PDD of some sort. So i absolutely understand how frustrated and upset you feel. But on a good note its good that he has given in, and offered testing. I think that like practically everyone else here - keep on BATTLING! We are all here when you need info, or just the need to rant.

love and {{{HUGS}}} for your journey. XXX

SIBLINGRIVALRY Sat 02-Aug-08 13:52:15

Hi Attila, thanks for posting.

I am definitely going to contact my GP about a referral. I wanted to do it last week but dh wanted me to wait until we had seen CAMHS. I agree that he's in denial -he is a classic ostrich when the going gets tough.

Also, I didn't know it was possible to get a statement for social needs - do you know if you need a dx for that? Will be ringing LEA on Monday.

Have spent this morning being lecturedtold by PIL that 'there is nothing wrong' with dd and that she is very bright and 'just playing me' hmm.

I feel as though I can't trust my instincts any more. They haven't spent more than half an hour at a time in her company for months. I would love them to be with her for a full day- or even better a week- to see if they would be so quick to dismiss my concerns.

Between them and CAHMS, I feel as though I'm being suspected of Munchausen's by Proxy!

SIBLINGRIVALRY Sat 02-Aug-08 13:59:00

MissCut, thankyou again.

I am so sorry you are experiencing similar problems. When we are the main carers, we see every little 'quirk' and cause for concern. I really hope you can get to see a paedeatrician (sp?) who is more synpathatic and on the ball.

I have been naive, I'm afraid, and expected it all to be so much more straightforward.
DDs teacher told me I would need to be a 'squeaky wheel'. I'm beginning to see what she means.

I hope you manage to get your voice heard soon, I can only imagine how frustrated you must be.

Let me know how you are getting on -we can all rant together! smile

Troutpout Sat 02-Aug-08 14:25:46

Hello smile
WE have just finished assessment with cahms with my boy (11)
I read your initial post and thought how similar your girl sounded.The only thing that is differnt is that ds runs up and down when he is 'thinking' rather than in circles (lol (grin))
Anyway..troutboy has a dx of Aspergers. (which we I have long suspected).Dh has taken about 4 years to get his head around the idea at all and pil are still working on it.I suspect dh and fil also have traits.

Troutboy scored 10 on the ados score (7 is cut off for nt i was told)..so he's only just within.
He's quite good socially ..he's learnt quite a few rules about what he is supposed to do..but its quite hard work for him and he can't sustain it for long.
In other ways he is typical.
He is moving up to Secondary school in Sept...so we've had lots of contact with new senco and extra visits plus a transition course and we have also applied for funding..he also has a new iep in place for september.
The ados test was very interesting to watch (the play tasks particularly)...how he plays so literally particularly and how he finds it difficult to read situations. They also observed him in the classroom and in the playground.
Let me know if i can help you with anything else

SIBLINGRIVALRY Sat 02-Aug-08 17:22:19

Hi Troutpout,

Your post was very interesting - I also think that my dh has traits! It's reassuring to know that other people are in the same position.

Can I please ask what your son is like at school? DD works very hard at fitting in and following the rules, so her teacher noticed few of her problems. However, after school can be a total nightmare, with shouting and screaming - sometimes from dd too. grin
The school wouldn't recognise her as the same child.

Also, she doesn't like to have many friends;she says it gets on her nerves when they keep sitting next to her and wanting to play with her.

I have a hunch she will end up as 'borderline' on her ADOS test, because her social skills can be quite good. Having said that, she virtually ignored her schoolfriend in Woolworths the other day and had to be reminded to say goodbye to her.

If you have time, I would love to know more about the ados test.

Thanks.

TakeMeHome Sat 02-Aug-08 17:36:54

Hi Sibling...

My son was referred by GP for Aspergers. First of all he say a Consultant Paediatrician for 1 hour. Then he has two appointments with a psychologist at CAHMS, lasting 2.5 hours in total. Then he had two 1.5 hour meetings with a speech and language therapist. These meetings were held over a period of 5 months.

After all that, the docs met together and discussed their findings. Then they reported back to us that he had Autism.

So, from what you and everyone else has been saying, one meeting is not enough at all to diagnose Aspergers or Autism.

Go back to paeds or GP and get a "multidisiplinary assessement" for Aspergers or ASD.

Good luck.

SIBLINGRIVALRY Sat 02-Aug-08 18:45:31

Thanks, Takemehome. That kind of assessment makes a lot more sense to me. The doc didn't even look at the diary I had kept, but based everything on the fact that dd answered many of her questions nicely.

When we queried the lack of flow in conversation and the way dd stared into space, it was put down to dd being nervous. This may turn out to be the case, but it was all a bit vague.

Sorry if I appear nosey, but am trying to get as many comparisons as I can. smile.

Do you mind me asking how old your ds is and whether he has good days and bad days? DD is having a good day, apart from minor traumas over a dress with the 'wrong'straps. I don't know if this means her issues are not to do with AS?

Also sorry for the confused rambles, I am all over the place today! Am so grateful for all the help and advice.

twocutedarlings Sat 02-Aug-08 19:54:16

Hi sibling,

You are in the same place that we were in the time last year, i always found the not knowing much harder to deal with than the knowing if that makes sense. The thing is with AS it is often a case of now you see it now you dont.

We have been to a party today and for the first 1.5 hrs DD was a dream, joined in with most things ect grin it was just the last half hour that she driffted off and did her own thing, you can see her start to get stressed sad first thing is always the hair bobbles come out LOL, she will that pace in circles and cover her ears and frantically count, if i can cut her off and calm her down quickly then all is well, but if not this is when she will meltdown and calming her down is a nightmare it can take hours at its worse.

DDs ASD/AS assessment was a multidisiplinary assessement, we met every in one go pead, salt and psyc this lasted about 2.5 hour. We then went back 2 wks later for an IQ test with the clinical psyc and 1 mth after this DD got her DX.

Troutpout Sat 02-Aug-08 19:57:27

Oh yes..i should have said..ds didn't just have the ados test..it was a multidisciplinary approach. A whole team. I asked for referrral via gp..we then saw a nurse who did an initial quick assessment. Then we saw the consultant paediatrician then the salt visited the school and then they saw him again for the ados test. After that we went back for them to report their findings and conclusions and talked about courses of action. They will be visiting him in the school again in September and speaking to his senco too.

I meant to say also that the salt who works for the local education authority has also been in to observe him at school and performed a quick assessment. This is an autism development team that works to support children, schools and their parents. I have been on a few courses run by them and they have a portal on the lea website which is quite useful.

Where are you based Sibling? your lea may have something quite similar.

School has been difficult at times..although easier once they accepted that there was a problem rather than him just being very bright but very lazy hmm

He's a very good behaviourwise and tended to get overlooked and would quite ofton be left to his own devices.

Socially he has stood out more as he has got older obviously ..once social interactions have become more subtle. He has a small group of what he calls 'friends' ...although i would call them 'similar quirky boys who end up in the same area of the playground talking computers'grin

Our main concern atm is lack of organisation for secondary school..he is hopeless.

I imagine that your dd's behviour after school is the fallout from having to work so hard at 'fitting in' all day. Ds finds any prolonged session where he has to work quite hard at conforming all day absolutely exhausting. He sometimes switches off at school in order to cope.I think he is essentially self taught tbh and is rarely animated by anything he has picked up from school..he kind of tolerates school so that he can come home and do the things he really wants to do.

I think you can find the exact outline of the ados test on bonkerz thread...Troutboys was exactly the same at that.It lasted about an hour and 15 mins. He quite enjoyed it i think (apart from the imaginative play stuff)

Troutboy definitely has good and bad days...or phases. I have definitely had times where i have thought he was fine and that i was making it up myself (particularly when he was younger) and then we would hit a bad patch again and i would think 'thank god i decided to pursue this!'

For what it is worth Troutboy has a thing about socks ...omg they have to be just so otherwise nothing is right with the world. smile

TotalChaos Sat 02-Aug-08 20:03:28

My DS (who doesn't have a DX ?yet) had a multidisciplinary assessment (ed psych, paediatrician and senior speech therapist). They only took about an hour looking at him though, which doesn't seem like long enough to me tbh. They didn't do an ADOS test.

TakeMeHome Sat 02-Aug-08 20:07:16

Hi Sibling

To answer your question, my ds is 8. He definitely does have good and bad days, or rather good and bad hours.

Originally, he was thought to have AS not Autism, but after the assessment, the docs said that he had "every AS trait, but even more, which makes it Autism."

He has loads of the same traits you describe in your dd (routines, change, circles, loud noises, gifted with numbers and dates, social interraction).

You must keep on insisting to your GP (or school, or HV, or Ed Psych - anyone you are in contact with) that she has a multidisiplinary assessement for Autistic Spectrum Disorders, and don't take no for an answer !!! Keep on at them, because you know your dd better than anyone, and you need your questions answered.

Let me know how it goes.

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