No hope of Paed appt until at least July!

[JaneMare]

The title says it all really...

I know this is par for the course for many parents with DC they suspect to be on the AS somewhere, but our initial assessment with CAMHS happened so quickly that this news has been a bit of a low blow to us

DD is 4.8yrs and doing very well academically in school, she's reading, she's writing but struggling with toiletting and organisation (amongst other things) - she has an EIP to include support for this. She's on Early Years Action Plus, so school are recognising there are issues.

DH and i have been reluctant to self-diagnose, partly as denial that our DD has permanent issues i suppose, but the news today that the waiting list is so long has shaken us i think is the fairest way of describing it.

i've been given lots of book titles in the recent past, all of which i've gratefully acknowledged, but not ordered/read. i didn't want to turn amateur detective and 'diagnose' and research her traits etc myself, but it's time to do that isn't it?

the evidence is there, staring us in the face 24hrs a day.

and i can't put our lives on 'hold' for another 6 months

i'm scared of reading too much into AS and messing her life up, can we 'harm' her by assuming she's on the spectrum?

sorry if this reads confused and self-indulgent, i'm crying now and don't know how to put into words how i feel

The appointment time you have been given sounds a normal wait to me.
Knowledge is good but I feel that you are still in shock over this possible diagnosis rather than scared of finding out more.
The way you are feeling is normal and pre diagnosis is a horrble time but reading more about it will help.
Your little girl is still the same beautiful baby you first held about 5 years ago, a label to hopefully gain some support for her does not change her.
Be kind to yourself and give yourself time. The more you know the better you will know how to protect her and fight her corner.

thanks for the kind words wasuup

i thought i'd come to terms with the fact that DD has issues and that those are with us for life, but it was a shock to be told today the length of the waiting list, and it's brought me almost back to the beginning again - i was told in December 'it wouldn't be before February' so this extra 6 months wait seesm like forever.

can we do her any harm by treating her as if she is on the AS though? i've read snippets online from Tony Attwood and others (our CAMHS worker even suggested it) and was convinced we were onto something but am now scared of being proved 'wrong' by the consultants.

i don't know where this feeling has sprung up from, i was all for fighting for her at school, i've started threads here calling the SENCO all different types of shit for not believing me, and now i'm doubting everything

DD had a meltdown on saturday, in front of people who do not know us very well, but am sure will have judged our parenting strategies...it was at ballet and i'd had to tie DDs hair up to get her used to having it pinned up tight for her upcoming exam...she wouldn't let me get her dressed after class. she refused to get dressed at all. then i remebered something i'd seen on here, about using visual communication instead of verbal and started to use hand signals to get her to answer questions. that calmed her down and we got her dressed and home in one piece. she hadn't liked her hair being up, she wanted it down straight away, but didn't want to tell me that.
i wanted to tell the people sat near us that she wasn't scared of me really, that i hadn't been cruel enough to her to warrant her cowering in the corner etc, i wanted to tell them that she has 'XYZ' and that causes her to react in adverse ways...but i can't. because all i have to go on is a hunch. what if i really am a shit parent? maybe i'm making her like this?
maybe she really is attention seeking and playing us for fools?

i can't say this out loud to RL people, apart from DH. enough of them (RL people i mean) think we're wrong anyway. it is our fault and all DD needs is 'proper parenting'

hi jane, sorry you are having a difficult time.

I think that self educating about AS rather than waiting for an official diagnosis is far better. even if you see the paed in july, a dx might be still way off.

my DD has been diagnosed with autism recently (she is quite severe, however). I have been reading about ASD a lot before we got a dx. reading about it gave me a much better understanding and it helped immensely when putting strategies in place to help DD (so yes, I would probably treat her as if she has a dx of AS).

learning about ASD also helped a lot when engaging with the various health care professionals. i think we would still be without dx if I would not have read about ASD a lot. learning about it have me the ammunition to push for certain assessments (which lead to dx) and help (such as Salt and OT).

the more you know about it, the better you can fight for her!

You will find yourself maybe going over the same ground with the paed as you have at CAMHS. Has your daughter had other assessments from a speech therapist or an occupational therpist?

sorry to say, but the wait time sounds normal to me too.

is seeing a paed a possibility? the wait time can be shorter.

agree with wassup - your dd is still the same lovely, bright, at times challenging but always gorgeous girl that she always was.

you will, over time, develop a rhino-hide like skin and be able to not care what other people think of how you communicate with your dd. you did what you needed to do, and you managed the situation well, got your dd calmed down and dressed - absolutely fantastic! it does not ultimately matter what other people thought (and I bet they weren't thinking what you think they were thinking anyway) - you managed to calm down your anxious and over-stimulated dd.

maybe you could set up a password with her for times she feels overstressed but unable to tell you what the matter is? a kind of cue for you to go straight to stress management mode (as you seem to do it well!)?

Imo, no you cannot harm her at all by assuming she is on the spectrum and therefore changing bits of her environment to help - no child is harmed by a low-stress, simple-communication environment, designed to alleviate anxiety and help the child communicate their needs

what you are feeling is normal too. I was in the dx process for nearly 2 years with my child. I knew it was autism (and quite severe). and yet I still walked out of the final paed appt, where autism was finally diagnosed, and cried. lots. it is an emotional release to a stressful situation. take some time to be kind to yourself, and then call up the paed's office and let them know you are happy to have a late cancellation appt, and tell them within what timeframe you could attend (eg are you a sahm? could you get there within the hour? etc). this might shorten your wait time.

sorry, meant to say, 'seeing a private paed'

we've not needed speech therapy as she's very vocal, if anything people have commented on her abilities to hold a conversation eg instead of saying 'yesterday' she'll say 'the day we've already had that was before this day' she obsessively sounds out phonics throughout the day, her teacher says she's a 'joy to teach'...

but her dance teacher has recognised traits that are common in other Aspergers children though, so that was a bit of positive affirmation for us. (dance teacher has worked in SN support in a school,TA i think)

i wouldn't know where to start on seeing a private practitioner, how do i start?

you could as on here for a recommendation - I know a few people have seen Daphne Keene (who is highly recommended). they would know her contact details and likely wait times.

A speech therapy assessment maybe required by the paed before they consider a diagnosis. Which may mean another delay. You can probably self refer via the head of service (info on how to contact maybe on your PCT website) and have this assessment done and dusted by the time you see the paed.

oh, and I see what you mean wrt advanced speech, but that type of word retrieval issue (not being able to access the word she knows, but instead explaining it out) could be a problem later on when more complex language is needed/used.

not saying it will be, but something to keep an eye on, imo.

thanks for the tip about speech therapy, she gets lots of words muddled and increasingly frustrated at herself for it

am googling like mad now

Your daughter sounds similar to mine Jane, especially with the advanced speech.

We always thought her language was really good until she had a SALT assessment, during this she was shown a picture of some cutlery but wasn't able to name it she said instead "you eat with them".
Another picture had a little by sitting on a beach l with his knees pulled up looking really sad the SALT asked Dd3[9] how he was feeling and she said "How am I supposed to know".

I think what I am saying is beware that her advanced skills in some areas are not masking great difficulties in other areas.

After many assessments and jumping through hoops for 3.5 years Dd3 was finally given a diagnosis of ASD in September last year.

Many proffs have great difficulty in seeing ASD in girls so gather plenty of evidence, keep a diary of any unusual/quirky behaviours and how you dealt with them, to show that you are parenting her consistantly.

Another thing that my Dd3 has great difficulty with is asking for help. We are not sure if she doesn't recognise that she needs help or just doesn't know how to tell someone. We have to guess that she needs help by the expression on her face or because she is crying.

I wonder if your Dd was struggling with this when her hair was too tight.

Be kind to yourself and remember she is still your lovely little girl.

Be kind to yourselves first and foremost. What you are feeling is normal.

Then you need to start developing that rhino skin and be prepared for the long road ahead; this is as much for your sake as hers. You as her parents are her best and only advocates here. Denial of this helps no-one least of all your DD.

As part of that process of developing said rhino hide I would also now start looking into applying for a Statement of special needs from the LEA. You need to think longer term here and Juniors is a completely different ball game from infants with all its unwritten social conventions and the like which your DD may well struggle badly with. SA plus support can be limited in scope and can be too easily curtailed. If speech therapy is needed at school as well I would be looking at applying for a statement because this will not be covered under Early Years action plus.

How often do you see her IEP; do school go through this with you termly?.

If your DD happens to be both quiet and undemonstrative in a classroom her needs can be too easily overlooked or even worse missed. Do not forget also that teachers and SENCOS are not trained to recognise special needs in any of its myriad forms.

the IEP has only just been put into place, she is so uncommunicative at times her class teacher was unaware she was wetting herself, Attila

thanks for reminding me about her possibly being overlooked too, you said this to me before and i needed this kick up the jacksy

Hi Jane

Were you involved in this IEP or was it given to you fully completed?.

What is the SENCO like, is this person any good?.

Would apply for the Statement now; her needs may well be overlooked even more in Juniors. The support and extra funding a statement will bring with it may well prove invaluable. Also unlike SA plus it is legally binding so will give your DD legal protection with regards to her educational needs.

www.ipsea.org.uk is a great resource re the statementing process.

DS (6.7) is also suspected as being on the spectrum (AS). We've been waiting since May when we first saw the paed. Since then he has seen SLT at school and has already seen OT (dyspraxia). We are due to see paed for "Social Communication Pathway" ie the dx appt where the paed, ot and SLT are all together.

It has been a long time but we have indeed treated him as if he has AS for months now. It has become normal to us to do so. We have visual timetables etc. Life has become much easier for us since we started doing this. We only have 1 child so it is easier for us to change routines etc to suit him as we don't have another child to have to fit around. He seems much happier and he is behaving much better now he knows what is coming next and what is expected of him.

We went private for his dyspraxia and SPD dx but were advised that the NHS dx of ASD/ AS is what we need to get support in our LA. I have found that this is right as the LA professionals seem to think that we can get anything written into a private report to get what we want/need. I would say that July isn't that long tbh.

the IEP was drawn up after a meeting DH and i called with school

we're 'unusual' it seems as CAMHS hadn't (and still haven't as far as i'm aware) officially contacted school to ask for obs sheets to be filled in, they sent them to us to pass over - with a covering letter - and the SENCO was really obstructive and dismissive with us.

we only signed the IEP the week before last, and as last week was half term it's not too early to see if this has a positive effect or not.

i wish there was a standardised approach to the path to diagnosis, it's easy to get bogged down with all the different people you have to get involved

Agree with attila about children being over looked, my Dd3 learned very quickly in reception that if she kept her head down she could become invisible.

When we tried to tell the HT/SENCO how much she was struggling she thought we were making it up. She never believed for one minute that Dd3 had ASD and she was obstructive throughout the time we were seeking proffesional advice.

In the end we moved Dd3 and within one term the new school had helped us to get a DX for her and now she is thriving. She still doesn't ask for help!! but the staff are much more aware that she needs an eye keeping on her.

As far as the path to DX goes I would reccomend that you get an A4 folder and put everything in it, all reports and letter in date order so that you know what has been doen and when. I found this really helpful in the fnal push for a Dx at CAMHS.

Sorry, meant to say. I would ring the paeds secretary and say that you would be able to take a cancellation [if you can that is].

You never know, some people ring up and cancel the day before.

I did this with Dd3's second SALT assessment and got seen quite quickly.

Good luck.

You have had lots of good advice, I just wanted to try to answer one of your questions. I have seen it quoted on here before that treating your child as if they have AS or ASD does no harm at all. It won't harm them to have instructions split up into manageable chunks, to have tricky situations practised beforehand and role-played, to have a consistent routine, that you are aware that your child may have sensory issues, etc. It seems clear that your DD is struggling somewhat, and even if her DX turns out to be something very different, the strategies you could be implementing will be managing her specific difficulties, whatever their cause. So don't worry about that, at least.

I have heard that Tony Attwood has some good books that apply well to girls on the spectrum, maybe have a search for his name on here.

thanks all, yes it's time to get off the pot and stop pissing about isn't it?

all those books kind people have recommended, time to buy and read

i'm going back to the GP and tell him we're stuck waiting, i think he might be able to refer to the Com Paed without having to wait on the CAMHS list.
am not sure a private DX will help with school, but it's definitely something to consider if we win the Lottery and am going to dig about locally how to get to speech therapy

EllenJane you've also brought out something else that has been lurking on my mind, what if it's ADHD/Dyspraxia... the strategies for parenting ASD are similar aren't they? (please say yes, someone)

Yes! Especially dyspraxia, so much overlap, so often co-morbid. Ask in a thread title to get the ADHD experts views. (ADHD is often co-morbid as well, hard to say where the ASD stops and the ADHD starts.)

i'm in tears again at the kindness shown on this section, this is so stressful isn't it?

TBH jane, I think Dd3 probably could have got a dyspraxia Dx if we had gone down that route but for me at the time it was her social skills and this business of not asking for help were causing me more concern.

now that we have gone someway towards helping her with that, her dreadful co ordination stands out again.

However, I know the ASD Dx is the right one for her really, she probably has both..

Dd1 almost certainly has ADHD and Aspergers as co morbids but she has no Dx and is probably not likely to get one now that she is 23.

I was told on our first visit to CAMHS to treat Dd3 as though she did have ASD and use the strategies recommended for ASD because it would do her no harm anyway.

I started straight away even without the DX [that came 12 months later], I noticed a change in her behaviour.

I put up signs around the house and started using a visual timetable and a red and yellow card system. It has maed a huge difference to the way we manage her.

Go for it and see if it works for you, it is a good indicator if it works and more evidence for your folder