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It seems my DD is high functioning Apergers

(7 Posts)
rainbowsprite1 Mon 15-Apr-13 23:00:47

We havent had the official diagnosis yet but both the GP & more importantly her teacher who has extensive knowledge and experience in this area agree that HFA is the diagnosis we will probably get. I am awaiting the assessment appt. I have known from baby days my DD is somehow different, in some ways I'm relieved there is a cause & I'm not just a shit mum. In other ways I almost wish I was a shit mum because then I could become a great mum & she would get better, does that make any sense??

I have so many questions.

1) what happens in the hospital assessment appt?
2) DD is age 6. I have told her nothing yet. What do I tell her for the appt??? How do I explain why we are there??
3) How does the whole process work? Are there any important documents I need? DD's teacher is doing a letter she is sending to the hospital.

I'm just so clueless about it all, & I really don't want to mess it up, ask the wrong questions or say the wrong thing to DD.

I would really appreciate any help or advice anyone has.

Thank you

Tiggles Tue 16-Apr-13 12:11:16

I think that the dx process differs depending where you are.
In my case (for 2 DSs) it was fairly straightforward.
I met with one member of the team on 2 occasions to fill in a questionnaire - took about 5hours in total. Examining all aspects of DSs lives at different stages, but particularly at age 4-5. Some things I didn't know and had to get back to them about, because they ask e.g. "does your child nod their head for yes" observed DSs for a week and didn't see them do it, so could answer.
Then they went into school and observed the DSs for an hour or so, spoke to staff etc.
Then the DSs went for an ADOS test. This was done without me present so no idea what went on.
Both boys were dx-ed straight away. With DS2 the nurse phoned the same afternoon as the ADOS. With DS1 they told me they were sure after the school obs but needed to dot the 'i's and cross the 't's with the ADOS.

I just told the boys that the doctors were doing a check up (made lots of sense especially with DS2 who has asthma and is always having checkups anyway).
DS1 I told his dx (AS) a while after he got it, when he was worrying about having no friends.
DS2 (6) doesn't know his dx yet (HFA) as he doesn't notice any difference between himself and anybody else, or if he does he isn't bothered about it.

Take care of yourself, it's hard to find your child is 'different' but it doesn't change who they are. Once I started to learn how to parent a child with ASD, it made life a lot easier.

adelinehillman Tue 16-Apr-13 16:33:37

It's quite a straigtforward process. DS2 has recently been diagnosed via an ADOS - where a professional asked him various questions, asked him to do things and she assessed him on that. We had lots of appointment prior as DS2 has complex needs, but were assessed for genetics via a blood test and he had x-rays etc. When the results of all of these were through we met with his paediatrician and given the diagnosis.

Regarding the appointment, i wouldn't make an event out of it. Just say you are going to the doctor. i haven't told my DS he is ASD yet, although it does get mentioned and i have told DS1 about his younger brother to try and explain why he is different.

There are positives you can take from this, now you have a diagnosis you can understand why your DD is different, and the school/NHS can possibly help her. We are going through the statement process for DS2 which (if and when we win it) will get him more help at school. We also see an Occupational Therapist as DS2 is ADHD and has hypermobility and she has been brilliant. Suggest you speak with your DD's SENCO at school and see what wider help you can get for her.

It's one step at a time. There are a lot of people who can help you (including Mumsnet). Have a look at the National Autism Society website for guidance, I found it very useful on diagnosis.

Hope all goes well.

crazeelaydee Tue 16-Apr-13 16:40:45

Hello my Ds is under CAMHS and was Dx'd for AS by them, we had initial appointment to take details of development DS was with us so they observed a little then, DS had ADOS, school observation, then 2 appointments to go through a questionnaire (ADI-R) outlining differences in Ds age 4-5 and now etc.

We just prepared our DS by telling him we all had to have a check up, me and dad had been the week before and the ladies just asked us lots of questions so nothing to worry about. DS is the same as LittleMissGreens DS2, he doesn't see himself as being any different so we haven't said anything yet but we will have a chat if this changes in the future.

UnChartered Tue 16-Apr-13 17:15:49

DD is almost 6yrs and has official DX of ASD, but is HF

she didn't do the ADOS test as it is heavily weighted towards male behaviour, and girls present their autism in a very different way to boys.

like PPs have said, it varies greatly who/how assessments by area, she was DXd by CAMHS, and is having further assessments by OT at the hospital for SPD.

there is some information about autism and girls, not all of it great i have to say, but you can rely on the NAS information about women and girls on the spectrum

one of the most useful things we took to DDs assessments were the diaries we kept at home of her behaviours and triggers - recommended by posters here and it was invaluable

rainbowsprite1 Tue 16-Apr-13 23:36:40

Thank you all for the helpful replies & links. I really do appreciate it. I have to admit I have no idea what ADOS is? Is it the assessment they do with the paediatrician? Another silly question (I'm new to all this) is SENCO the teacher who co-ordinates all this stuff at school? If so we have been very lucky as the SENCO is DD's teacher & has children on the ASD spectrum herself.

Unchartered, thanks for the link, I'm off to go and do some homework smile I tried googling & scared myself silly sad

Tiggles Wed 17-Apr-13 10:28:38

The ADOS is a diagnostic tool for autism, but it's a bit odd. The test differs depending on the child's age/verbal ability. There is a cut-off score in 3 different sections and if a child scores over that score they have difficulties in that area. If they score over the cut off in every area they probably have autism. But I think there are occasional cases when a child scores over and they don't get a dx (not sure about vice versa) but a 'wait and see when child is older'.

I don't know what the test is like exactly, as my boys did it unaccompanied by me, but I went through the results for DS2 very thoroughly with the autism nurse. Every question scores out of 2. 0 means behaviour not a problem, 2 is a big problem and 1 is in the middle. Not every question has a 1 (E.g. eye contact is either observed, 0, or not observed, 2). They asked DS to do lots of tasks whilst they observed him, asked how he would react in different situations, they picked up here that we had taught DS lots of standard responses to situations, so although that could have 'skewed' the results they were able to mark the test accordingly to what was a 'natural' response from DS and what was a 'learnt list' response.

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