Not sure if I have referral

Thank you, I will. 

So glad you are on the right path by the sounds of things.  Hope the assessment reveals all and you will start to be equipped with the knowledge of where your daughters stands and how best to help her.

Let us all know how you get on.

Hi schmedz, well so far so good. I went to GP in June, he got back to gp in July to say he would assess my girl and the dr thinks this will happen sooner rather than Later so hopefully ball rolling nice and smoothly. The dr. We are going to see for assessment though is a general paediatrician so I just hope he knows what he's doing especially as diagnosis in girls is much more difficult.

Thanks for your kind words.

I can relate totally to your frustration about this situation.  I have a 10 year old daughter and I was concerned about her over 3 years ago and was told by the GP that she was just precocious and the twitching  she experienced was just 'one of those quirks that some people have'.  He eventually agreed to refetheir to CAMHS but as they were psychiatrists for children with suicidal and self harming tendencies, mydaughter was told she was 'a bit shy and could work on her social skills'.  

As a parent you know if there is something not quite 'right' and my advice is to be persistent it his process.  For some reason it seems to be difficult to get taken seriously, especially with a daughter.  The more I read the research about presentation ASD symptoms in girls vs boys, the more I understand why  it is so difficult to diagnose in girls.

we eventually went private with a clinical psychologist and after spending well over £1000 in appointments and psychometric testing Aspergers was confirmed.  We simply cannot afford to keep paying for appointments to give support and as our local borough has NO services whatsoever, we need thE NHS diagnosis.  3 years after initially visiting the GP I have finally been able to organise an assessment for her through the NHS in our borough but I am a little concerned as it is not a specialist ASD unit but a general paeds one.  Hopefully they will be more knowledgable than the GP!

Good luck with your daughters' diagnostic process and hopefully you will not have to go to the same trouble and expense as our family did.

Thanks for your help aqua, I'll post on here once we've seen the paed. X

Hi Justfour

Im glad things are moving forward and youve got an appointment,
Im not sure what will happen with the paed dr i think being diagnosed as an adult is different the psychologist nurse and registrar and then the dr mainly talked to my mum and bits to me.
Im sure theyll know about ASD and hopefully they'll be able to help good luck ill keep my fingers crossed for you x

Thanks for that Sharon. It's reassuring to know she will be given specific tasks to see how she responds. I feared he may just observe her while talking with me, which would of proved nothing. At least if he does those tests and then Im told she's fine I will know at least she's been tested properly. That's all I want at the moment, then whatever happens next we can move forward.

Thanks for your help x

Hi Justfour

Don't worry about the fact that school don't see the same things that you do. I think that is quite common - and is probably partly to do with teachers not really understanding the signs of ASD (and while they may only be subtle in school, they are probably there to a certain extent), and also because the children get through the day and appear to cope until they get home (my son was a different person once he was out of the school gate!)

I should think the paediatrician will do an ADOS assessment with your daughter - part of this involves asking questions (e.g. what makes you happy?) and part of it is interactive with describing pictures, telling a story, using toys or objects for various things. My son wasn't very cooperative with the questioning and kept saying 'I don't know', so I was glad that he seemed happy to participate in the more interactive part. I thought he did quite well with it, but sometimes I think we are so close to the situation that we think the child is behaving quite 'normally', it's only when you take a step back and look at what they are saying and how they're saying it that you realise it's not actually 'normal'. 

We actually went private before our NHS appointment came through and the psychiatrist gave us lots of forms to fill in and did an ADI assessment based on our answers. From this she said my son did not have ASD - this was based only on parents response and not on any discussion/interaction with my son - but she was scratching her head a bit because from everything she'd seen of my son there were definite ASD traits! So, I know you think that the answers you give on the form could give a better picture of your daughter - but it's quite likely that from talking to your daughter the paediatrician will actually pick up a lot more than you think. 

Sharon

Hi stranger, thats what I think too. She sometimes comes home and literally as she walks down the hallway, will just shout out some random noise as if she just needs to let something out. School have no concern about her at all. This is why I worry that the paediatrician won't see what's actually going on. I'll just have to trust that he knows what he's doing. 

Letting it go at home sounds normal to me. I mean, your daughter has probably had some issues at school and tried her best to carry on as normal. After a while, it gets too much and it all comes out.

Hi kikat, just got told by the GP yesterday that she can see the paed for an  assessment. That's all I know so far. Unlike your son my girl (11) behaves relatively 'normally' in school etc. it's at home she let's go mostly. I have read here and elsewhere that girls tend to hide it more than boys, I hope the paedetrician knows this or I fear he will just send us home. Hopefully as you said he might take notice of the rom I fill in then as that will probably be more telling. 

It does help to know what to expect, from the gist of things I think it will just be the paed who sees her. Thanks for your reply, helps a lot.

Hi,

When we first went to our GP (at the school's recommendation) about our son, we were referred to PCAMHS. We duly filled in the form, and PCAMHS wrote to say they didn't think they could help us and that we should probably see the community paediatrician. With this and a report from the Educational Psychologist, we persuaded the GP to make a referral to the community paediatrician and got an appointment for an assessment. I didn't know what to expect either, except that we got a lengthy form to fill in about our son's developmental history and social development/skills.

At the assessment, only the paediatrician was present. He carried out a cognitive skills test with my son, asked him to draw and write a few things, and gave me a couple of standard questionnaires to fill in. He also used a few other diagnosis tools. At the end, he made his diagnosis (Asperger's), and he did say that even based on the form we had filled in, he strongly suspected this diagnosis (so the form was important!). I think it was helpful to have some information from the school and the educ psychologist with me too. However, the way my son behaved during the assessment highlighted many of his issues clearly, as he was obviously anxious and stressed by the whole experience.

I was surprised that we received a diagnosis straight away, without having seen the speech therapist and occupational therapist too, and given my son's young age, but I figured it must have been pretty clear to the paediatrician, who I think has a lot of experience in this area. We are now going through the speech therapist and occupational therapist stages subsequent to diagnosis. I think the assessment process varies from region to region, though, so this might be different for you and might involve a team of people. Have you already had such a form to fill in?

Hope this might be of some help, and good luck.

Had my appointment yesterday. My daughter is being referred to the general paediatrician for an assessment. Not sure what this involves and am a bit worried because she will behave like any other 11 year old when we are there. The same as when she is in school.

I assume there are tests that she can't fool? Anyone got any idea of what will be done in the assessment? 

Thanks 

Hi azaeal, my appointment is for next Tuesday. I did phone to ask what specifically it's about but the receptionist wouldn't/couldn't say. 

Before I do anything else, I'll wait to see what dr says. Could be any number of things so I'll do that first. 

Hope your appointments go well too. 

Have you been to see the GP yet?

Also I would advise contacting the NAS (give them a ring they are really helpful) and find out where your nearest diagnostic centres are.

I contacted them to get a list of our nearest centres and I have that as well as various traits etc printed out to drop off at the GP's tomorrow (after I called her and discussed it all she is happy to refer her as CAMHS are making no progress)

Hope the appointment did/goes well for you.

Yes Sharon, a letter to go to the GP to discuss a letter they had from the hospital following a referral from the GP. Does that sound right?Confusing myself! Lol 

Is it an appointment with your GP to discuss the hospital letter? Or is this an appointment with someone else?

Hard to guess what it could be. Often you just receive a letter in the post either to turn you down or to accept a referral.

Do let us know how it goes!

Sharon

Thanks for your reply. I'm just impatient! :) I know there's a lot of too-ing and froing and waiting, which I'm prepared for but it's this initial will I be taken seriously or not? Does she just want me back to say, she's fine, or whatever. 

I will just have to wait and see and go from there. Hopefully I will just get to talk to someone who knows about ASD. If they say not to worry then fine. 

Good luck on your journey azeazl. X

It sounds as if they want to discuss the points you raised about your child, they will probably want you to go over everything and take it from there.

My 7 year old was referred to CAMHS because of her severe hysterical reactions to some hospital treatment she is undergoing. Initially the GP had her down as 'needle phobia' but then I explained that I believed she may have Asperger's and that's why she is reacting in such a way, she wrote to CAMHS again with my concerns.

We saw a psychiatrist who took down alot of information and I told her that I had been diagnosed with Asperger's and I believed my daughter has it too as she has alot of traits. She agreed to send her to a 'sensory specialist' about her sensory problems, a play therapist to help her with the hospital stuff but it would all be in the report she would send us.

We got an appointment with the play therapist almost instantly, 5 weeks in we've been told there is nothing she can do to help our daughter and recommends sedatives and anti anxiety pills for her hospital visits. We received a letter to say she'd been referred for occupational therapy for her sensory probelms and an appointment would be sent out soon. 2 weeks later we get a letter saying we have to go to a 'talk' for parents about sensory processing isues before they will consider giving her an appointment with the OT.

Still that doesn't help with diagnosis, they are trying to treat the symptoms without finding out the cause. So I'm back to square one with trying to get her seen by autism specialists, I need to make another appointment to see her GP who will hopefully refer her to a local clinic which funnily enough is where this 'talk' is going to be.

Anyway what I'm saying in a long winded way is that your child may not have been referred to an autism specialist. The likelihood is that it will be some kind of first contact psychiatrist, mental health worker or whatever to get a case history and go over why you feel your child has autistic traits.

Good luck :)