Help! Where to start, what to do....??

[steph007]

Hi all,
I'm still a bit in shock after being told yesterday that my younger girl (2 and a half) may have autism (or do you say 'be autistic'?! I have so many questions now). She's yet to be properly diagnosed, but it is likely, although if so she's borderline - I don't have huge problems with her (as long as she's doing what she wants ) but some behaviour issues are apparent. So i thought I'd just ask if anybody has any general advice, ideas on what happens next etc?

I've had a quick glance through loads of topics on here, but what strikes me immediately is there seems so much to learn, things like statements etc, and I really don't know where to start. Also I feel slightly guilty (don't we all) because this has happened relatively quickly - I referred my girl for speech therapy in Aug at 2 yrs 2 months, got an assessment end Oct and was then referred to a paediatrician for a development check, which is what we had yesterday. So I'm to meet with that lady doctor again in a month or so to discuss things further, but she sounded pretty sure that autism is what she will diagnose. Are there different levels of diagnosis? Do you have to push for a statement? Do I need to see other people/doctors? Wow, that's just the first 3 questions, better stop there...

I did laugh to myself as I associated with one post where lining up blocks and putting them neatly away as per the colours rather than building towers was mentioned - that was my girl exactly yesterday!
Thanks all

Steph
p.s. not sure why but just have to post the following - - well something needs to cheer me up!

First of all, it's really good that you've got the diagnosis so early as it gives you a great window of opportunity to work on her speech, and her behaviours, with a view to possibly going for mainstream inclusion, possibly with a 1-to-1 at least at first (you say she is probably quite mild). You will get offered a little speech therapy, but not enough, so if you have cash, or can persuade family members to stump up, use the cash now to get extra speech therapy or to seek out an ABA tutor (this is the method of speech therapy we used, and it's been very good). I think you can probably wait, even up to a year, before plunging into the statementing lark, though a pal of mine did get a full statement for her DS at this age. You will get told it's too early, but that is not necessarily true. On mumsnet links is a lot of info about getting what's called a statutory assessment, which is what they do before issuing a statement. Beware that if you get a mild diagnosis the LEA may use this as an excuse not to give you a statment - they will say "don't worry about statements, we can give your DD all she needs within the School Action Plus system". Don't be fobbed off. I recommend you google VB, which is a form of teaching autistic kids and stands for Verbal Behaviour. Meantime, you can start drawing speech out of your child by teaching her first to imitate actions, then to imitate sounds, then getting different results with different sounds (eg she says "bis", she gets biscuit). But maybe her speech is not as delayed as my DS's was at that age?
There is so much more to say but I think if you just start by reading through a few past threads on autism diagnosis on here, googling VB or ABA, you will get a fabulous introduction. The other thing to do is to try and give her replacement play skills, so she doesn't do the repetitive lining-up stuff all day - jigsaws, or dressing dolls, anything that will start to stretch her imagination and get her interracting with you rather than playing alone. Good luck, you are doing the right things.

steph, not sure where you are, but some local NAS groups offer great support after diagnosis - the one where we used to live also had a fantastic library of books for parents to borrow, and ran a weekly coffee group as well as a sibling group. they are worth looking up, anyway.

no need to feel guilty about getting support lol - dd2 left hospital at 5 weeks with a whole batch of referrals and although we have moved a lot, we have never had to fight for provision. i know it can be more difficult to get provision for children with autism, but never apologise for what support you have.

for what it's worth, dd2 was assessed for a statement to start yr r. until then we managed well on SA+, she was given a two morning nursery place on her first birthday, and had full time 1-1 in nursery from 2. i would say the earlier the better in general though, but as we had a good team of therapists etc, who all liaised well with each setting wrt targets etc, there was no real need prior to 'school'. it's very much a postcode lottery...

good luck with the continued assessments and provision, and welcome to sn, whatever happens with your dd there are lots of folk on here with relevant experience who can offer a friendly ear.

Hi Starlight,
thanks, what you've said makes sense, especially the bit about maybe not being borderline. Would rather understand this all and accept it than be in denial and not get her the help she needs! So yes, I see the gap could widen. So if the paediatrician is unlikely to be able to diagnose, who will? And how many different people might I have to see? Is my life going to be one long churn of meetings from now on?!
We're in Herts... anyone else local?
Thanks and p.s. what does FWIW mean??!!!

Welcome to the boards Steph.

FWIW - for what its worth

My ds2 was dx with autism when he was the same age as your daughter, he is 4 now and doing really well. Straight after his dx we were invited to attend a weekly playgroup for toddlers/young children with an ASD, which we did. It was an excellent group as ds2 was shadowed by one or two professional t a time, and I got to sit with a whole group of parents going through the same thing as me. This group was run by the EP/SALT who was part of the team who dx my ds2. It might be worth asking if there are any such groups when you go to see your dds paed.

There are also a lot of parent courses you can attend ran by the NAS. I done the Early Bird course shortly after ds2 was dx, and am doing the Early Bird + one this year. It is a very interesting course and helped us loads in the early days when we were still finding it hard to grasp ds2s dx.

I wouldn't worry about statementing just yet as she is still young, but I would try get an EP for when she starts nursery/playgroup.

Starlight
"tbh you'll probably only go from terrible to bad"
"you might want to consider moving"
"expect to shed quite a number of tears"

Is this what we did to you when you first joined?

There's being realistic and saying it like it is and then there's just depressing and scaring people - not what's needed when your child is first dx'd - be gentle, woman!

Steph one of the first things you could consider doing once you have the dx (which seems to be moving along nicely, though worth asking next month for timescales etc. because you need the dx to be official and in writing - the paed may be able to diagnose, by the way ) is get a disability team social worker, if possible. You do this by ringing social services in your area and asking for an assessment from a disability team social worker. They will often act as a key worker type person who will help you access the stuff you need to e.g. autism outreach team, DLA advice etc. etc.

The Statementing thing I would leave for a couple of weeks because it is one of the more difficult bits - you need to read up on it first - look at www.ipsea.org.uk or the info on this site about Statutory Assessment.

At the moment, focus on remembering that she is still your girl, no matter what other aspects of her there are! Don't get Google obsessed like erm some people do as it can be scary, especially before even having an official diagnosis of which level they may think she's at. Try and find a parent group for parents of kids with ASD in your area - I've found that very useful as parents know the local systems - which doctors/ SWs are good/ bad, which schools are good/ bad and it can be a supportive thing (and I usually hate parent groups!)

Keeping things moving forward is positive but remember to take a step back too and give yourself some time to relax as well, if possible!

Hi Starlight and givememoresleep,
thanks to both of you. It's fine, I get what you are both saying and I suppose at the moment I do sound and feel fairly 'together' but I can appreciate it may hit others much harder. I'm sure I have crying to do, nearly lost it once or twice but not burst yet .
I guess I'm flitting between the 'it won't make much difference as DD2 is just her, bundle of fun, and hasn't changed overnight so we'll cope' to the thoughts I'm trying to push back about how our lives are not going to change as such, just go down a dramtically different route to what we expected, and there's so much she may miss out on, such as ballet lessons that I know she'd love to do as she has seen her sister there, but would be too disruptive to do herself.
Ah big sigh. It'll be OK!
Shame I am in Herts then not likely to move though so we'll just have to wait and see (guess we'll be doing a lot of that!)
thanks for all your help, I'm sure i'll be posting more, this support is just what everyone needs!

I'm in Herts and my four year old son has ASD. My experience so far has been middling - in some ways they've been really quite good for example we saw an OT yesterday less than a year after DX and his sensory problems are not super acute, you won't get that everywhere. I am now coming into the notoriously fraught area of education and statementing and on this Herts are definitely worse than most...

It's great to see you've got your head so well screwed on re the DX - she's still your daughter (with or without DX) and if she has extra needs then it's as well to be informed. I wish you the very best of luck.

Are you under a different PCT perhaps (I imagine OT comes under PCT control?), I'm in St Albans and I'm ashamed to say I don't actually know what PCT that is. The paed referred for very minor fine motor skill delay and various middling sensory peculiarities.

HTH

Hi 4nomore, I'm in St.Albans too. Sure you're very busy (aren't we all?!) but it would be good to talk if you do have time....?

oh and what's PCT??!!!!

Primary care trust - pays for services like OT/SALT

Hi Steph, tried to PM you but your account isn't set up to accept PMs. Very happy to talk about my experiences etc.

Re PCT, I've found out it's West Herts.

janine

Thanks Starlight, I may take you up on that! Nearly all the reports are in and I'll have to add my two-penn'orth soon and Parent Partnership haven't proved very accessible/helpful (though I admit to also being a little suspiscious of their quasi autonomous nature anyway) so I might want help. The trouble is I don't even know what I want (beyond the best for my child obviously).

Sorry Steph for the hi-jack!

Steph

When I first joined this board, Starlight gave me a really good piece of advice. Write down absolutely everything. Get a notebook and record all phone calls made, emails sent and details of conversations so you can refer to them later if needs be.
Hope this helps and keep posting on this board. It has been an amazing source of information for me and hope it is for you too.

Thanks, I've started a blog but I think that's really more for me to get my feelings out, so you're right, a diary to document dates and things said is a very good idea!
4nomore I think I've changed my settings to allow messages - but it said something about a subscription, which I haven't paid so not sure it'll work? would you mind trying anyhow?!
Thanks

Steph

You have been given some very good counsel already and I hope you pay due heed to it.

I don't live in Herts (my brother lived in St Albans for some years so their PCT is West Herts) but even I know that their SEN provision leaves very much to be desired and know for a fact that Herts get the most complaints to IPSEA. They are on a par with Essex for being shite and tight fisted!. What you may have been told by Starlight therefore is very direct for a newcomer but I feel forewarned is forearmed. I would personally rather be told straight out that provision in a county is shite cos no-one in authority will admit it.

It is not too early either to look into Statementing nor DLA. Apply for both asap, Cerebra can help with DLA. Do not attempt DLA form filling without someone with prior knowledge of how the form should be written (as these forms can be both very long and emotionally hard on parents to complete). Infact you have more chance of getting a claim through if it is couched in specific terms/language.

You have some hard battles ahead of you but you Steph are her best - and only - advocate. No-one else is better placed but you to fight her corner for you. Because no-one else will.