Hmmm, now that I say that, DH sounds like he wants to go to Warwick Smith after all.

So, during that 1hr appointment, does he actually say yes or no as to whether DS is autistic? And what happens after that?

In the Waikato we have CDC (Child Development Centre). Do you have anything similar? At the Child Development Centre they have all sorts of specialists e.g. OT, Psychologists, Paeds etc. I found they did (by far) the most thorough job.

The first person we saw was a Paed (private) at 2. He said he thought he was just being silly . At 4 we saw another Paed (privately) and after half an hour/hour he diagnosed him as being on the autistic spectrum.

A few months later we went to the CDC. He was seen by an OT, speech therapist and a psychologist (all at the same time ). They spent hours with him (alone and with me). They also went to his kindy and saw him at 'play' and spoke to his kindy teachers before making any diagnosis.

I personally wouldn't see a Paed if the child was borderline. I think borderline kids need a lot more than just a half hour/hour before they get landed with a diagnosis.

I think the first referral we got was a CDC but when I phoned them they said they would only do therapy post-diagnosis but not the diagnosis itself.

I don't think i'd consider him borderline, but at the same time I would say he was more mild than he is strong.

Lately he's been a lot more excitable. One look at my niece and nephew then that's it, he'll start bouncing off the walls for hours. Still having issues in regards to food texture (man I wish he'd eat mince!), Still not speaking in sentences... i've noticed he is improving the words that he does say (birds used to be "bowls", now they are birdies) but not really picking any new words up and not putting any words together like "look daddy! birdies!".

He won't get surprised easily at all. Even leaping around a corner at him and shouting BOO!, he'll just keep going. If he is in his own world then good luck making contact with him. Once he begins with the squealing/squawking (echolalia?) then you'd be better to invest in ear muffs than trying to convince him to use inside voices. Spinning is a lot of fun too, my dad goes nuts if he sees Nathan spinning... he says its how babies get drunk!

At preschool he goes into his world and ignores everyone else (although, he did try cuddle a boy today, but that was mainly because he was trying to take the boys car without him noticing), so he doesn't have much in the way of friends. If you ask him to do something he doesn't want to do (like stop playing and tidy up) then you can expect him to either throw himself flat on the floor in tantrum mode, head-butt various pieces of furniture or squeal/squawk at you.

There is more, obviously, but it's a drain to type it all out. Generally speaking he is a happy little boy, just one who might need a bit of help really.

We got our diagnosis at the appointment, but then I guess it's pretty obvious that my ds is autistic. I think if he (Dr Warwick) is not sure on the diagnosis he would offer you another appointment (eek now that would be expensive). at the appointment he would look at Gid, try to make eye contact and look at the way Gid responded to that (Gid flapped, ground his teeth and hid under a chair and wouldn't come out) I can't remember what else happened at the appointment - but he seemed to cover all aspects of asd, I think we got a pretty accurate diagnosis

After the appointment we felt kinda lost... like ok where do we go from here? we heard from the early intervention team a week or 2 later, and taikura trust as well. (we get some respite days for Gid). Oh - and we get the child disability allowance. we also got a letter from Dr W with everything that was covered during the appointment, and Gid's diagnosis.

I think he assessed our daughter as well - she's 2, and neurotypical

Hi IP
we saw Dr Kevin Appleton at the starfish clinic in Ponsonby. He is a GP and a psychiatrist & kiddy friendly. he is I think medical director of autism NZ (or something similar) & specialises in Autistic spectrum. Autism house recommended him to me after some diagnosis issues I had with other health professionals.Sorry i cant recall the cost but I can say he was excellent.

'Our' child development unit wont see kids till diagnosis & then only if significantly impaired after the age of 5 years or if under 5 years, then dependent on the number of referrals they have in the que.

Im a practice nurse & very used to ringing hospital clinics. I would be more than happy to do that for you tomorrow if you would like. Ringing North shore & waitakere hospitals clinics are like a test on patience because we always get put through to the wrong place lol! PM me if you would like help

Karen - I don't suppose you have any idea what the wait list is like on the public system? We've been told 2 months but who knows really!

The thing i'm worried about with paying to go privately is that the majority of Nathans "symptoms" wouldn't be able to be observed in that sort of setting. Things like his lack of social interaction or his intense concentration on things like toy cars (or the wheels). I presume this would all be discussed in the appointment though?

Hi Gidsmum, welcome to the board. Sorry to hear the childcare situation is getting stressful. Surely they'll let you be fill in until they get an actual person? It's hard walking away from them though, whatever the situation.

IP, I think it's fine to talk about healthcare practitioners out there who are known to specialise in things, and who we can recommend. That's what this forum is here for!

The public system can be agony. I don't know what it's like up in Auckland, but our experience here in ChCh (and, like you, we're waiting for a diagnosis) was months and months of waiting and trying to find out stuff. We were lucky that our GP did a lot of info-gathering for us. I think our pathway was GP-->GSE referral and Beacon House referral (GSE is the Special Ed section of the Min. of Education, and Beacon House is a ChCh DHB intervention team for children)--->Decided to go with GSE as BH wasn't quite appropriate for T's needs)--->Got speech therapy with GSE and are waiting to see if we can get some hours from an early intervention worker.

Our GP also referred us to a neurodevelopmental clinic for assessment by a hospital paed.

I don't know if this is the process everyone follows, it was just the way it worked out for us. The weigh-up with public vs private is really the waiting time involved I guess. We are seriously considering going private because the longer we wait, the older he gets and the harder things are to change.





Do you mean you're worried you might get a shorter appointment time if you go private? I'm not sure if that's the case, or if it makes a difference. I know we got a reasonable amount of time with our appt (through the hospital) but it didn't really matter, they have a ticklist they go through and T came up trumps on every box, so he was assessed as not having any overt ASD traits (with the proviso that he was too young to be sure), and with the recommendation to follow up. We were frustrated because we KNEW he would make the ticklist, but there were a range of other behaviours that were just not right, and weren't assess-able.

Anyway, hope this long-winded post helps a bit.

It's REALLY confusing when you first enter the system, because none of the information is easily accesssible--you have to ferret everything out from people and even then you only get bits and pieces of info, never really the whole picture.

Keep plugging away!

Yes, I know what you mean. We discussed social interraction, obcessions (my boy also LOVES wheels, spinning fans etc, he spots them everywhere), sensory things (his teeth grinding, dislike of crunchy foods and most textures etc) The forms we filled in prior to the appointment covered all aspects of his development, including pregnancy/birth, milestones etc.

We knew he was autistic before seeing a paed so we were able to say we were concerned about his development, these are the strange things he does... (without mentioning our knowledge of autism) and everything pointed to asd.

I hope that helps a bit

Thanks
I have printed off a few things for kindy tomorrow which help me feel a bit better.... tho I still don't want to leave him there... I feel like they don't know him well enough or know how to deal with his meltdowns. on the last day of the term he got really upset when he was playing with a car on the play mat - a wee boy came to join in his game, which was ok. the other boy moved the car to fast and Gid collapsed into a screaming heap on the floor. the kindy teacher sat there rubbing Gid' back (which wasn't helping). Another teacher saw me coming over to help - and told me he was fine. I quickly explained that he wasn't fine and needed to be picked up, taken away from the situation and calmed down. It's his anxiety that makes it so hard to deal with - he just gets so so worried. I will talk to our early intervention team about finding a support worker asap.

205 - What I mean is, there won't be any other kids in the room at the appointment so the paed wouldn't see the way Nathan ignores them... or, the paed wouldn't see us attempting to feed Nathan his dinner and his reaction to a small lump in the puree. Things like that. In my experience Nathan will wriggle and squirm trying to break free and make a run for it out the door. The only way to stop him is by strapping him into the stroller and giving him a bottle!

So we are still looking at Warwick Smith, whose receptionist says costs $380. What she wouldn't say though is whether or not WS would diagnose him at that appointment if there is cause for a diagnosis.

Also, when you go privately, how do you continue on in getting the things through GSE like teachers aid and speech therapy? Will we have to pay and see WS again? I don't think we'd be able to pay that sort of fee too often!!

An assessment will be both an observation of your boy as well as an interview with you, which means you'll be able to tell them your concerns (eg, N ignoring other kids), and they'll ask you questions around that. Those things go on the ticklist too, depending on the child's age of course. So N doesn't necessarily have to demonstrate the behaviour for them to take it into account. Having said that, we've found the younger the child, the quicker they are to try and 'reassure' you as a parent about behaviours they can't observe, which can get frustrating.

There's never any guarantee that you'll get a diagnosis from anyone at any set time, unfortunately. It all depends on what your child is doing relative to his milestones and other age-appropriate behaviour--and loads of other things. I know what you're saying, it's a lot of $$ to spend to come away with no certainty, but that's the way it goes (again, frustrating!).

I think from reading other peoples' experiences, public services are quick to withdraw support if they see you're going down the private route. We haven't hit that yet because we haven't started thinking about private providers, that seems to be the general consensus.

Other people may be better placed to comment on this than me though.

Well, we won't be paying for any private support I think... just the initial assessment. I know of someone else who lives in my area that went with Warwick Smith and is now under the GSE umbrella for her boy... teachers aid etc so theoretically it can be done. I just havent been in this position before so don't really know what i'm doing!

Oh yeah if you get assessed and diagnosed by a paed independently you can get them to refer you to an early intervention service (like GSE although here in ChCh we have three others). You'd probably only run into problems if you were accessing other services on an ongoing basis, which it doesn't sound like you'll be doing so you should be fine.

Phew! Lol. Really, the whole point in us going private for a diagnosis (if there is something to diagnose!) is to get the ball rolling.

Another thing which I wasnt sure on... after the appointment, if Nathan is diagnosed, how do you tell your family? Like my parents mainly. I get the feeling they'd be in the "pffft he's fine! just slow" camp.

We were referred to the public health system once we had our diagnosis. We haven't had any trouble with it

Sorry to jump in here.

I've had experience with Warwick Smith professionaly and personally.

IP - from memory it is $380 for the first visit, and after than you only pay for a follow up consultation. I can't remember how much that was, but it was definately less.

We saw him for medical not developmental reasons with no 2. I found him to be fab. He really listened to our concerns and observed her.
We'd had trouble with people reading her notes and then jumping to conclusions and not really listening to us.

I've also had a bit to do with refering kids from school on to him. He seems to be the man that most schools in our area deal with.
The only thing I would say, is that I have heard is is rather quick to medicate. But that may not relate to your situation at all.

You can be referred back to the public system after seeing him privately. In fact I think he does also work in the public system .

Once you are at kindy too, there are lots of doors that can open for you.
GSE should be able to help you, and Rainbow house here in Auckland.
Whirinaki does the older kids I think, but I'm not sure. http://www.healthpoint.co.nz/default,36344.sm

I hope you get some answers. It is difficult not knowing what you are dealing with and facing an uncertain future.

Yeah $380 is what they quoted, do you need the follow-up? Or are you done with him once he refers you on?

I think medication will be pretty much the last thing we'd resort to. There are so many other things to try first like diet or supplements.

Our appointment with Warwick Smith is Nov 26th (or 21st?) so still a month away, but closer than if we waited for the public system!

Thanks Suomi All information is welcome!

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So today's question is a bit introspective and why me wah wah, but:

Grief


I picked T up from daycare today and had a chance to observe him for a wee while before he noticed me. I also got a chance to observe the kids around him and how they reacted to him.

It's quite obvious that they've realised he's different, and it's equally obvious that he has no concept of that. He's quite happy babbling away in his little world of one, without any reference to anyone else, but watching the little girl who was watching him was really hard. She looked at him like he was an alien (which he probably comes across as). One or two little boys tried to approach him and he just ducked away and ran for his life. It was just heartbreaking.

I know I should be happy that he's content, even if he's not doing 'normal' stuff, but I dunno, how does that work? Seeing your child not being able to interact on any level with his peers and being satisfied with that?

So I have to admit, I'm grieving a little today.

When did it first hit you, and how did you work through it?

Hiya

We also have seen Warwick Smith 2 months ago for DS. I found him to be very informed and fantastic. Our DS didnt display any of the behavioural symptoms in the appointment as he has done so at home but Warwick noted his behaviours. He then referred us to CD which has the neuro,behaviour,speech therapists phsychiatrists etc. We only waited four weeks and Dr Smith said the public system is better in alot of ways for multiple areas of support. I dont personally know about autistic diagnosing but he will tell you when you need a follow up appointment with him. Follow up is $175.00 quoted to us when we took DS. We havent got a diagnosis yet as he is too young 10months. hope that heelps

205 - when did it first hit me?

Oh I don't know - various signs and flags waving at me. When he was 2 we took him to playgroup to help his language and I watching being bullied, ridden roughshod over, isolated - and realised how far behind he really was. Early Intervention gave us a number of diagnoses when we'd only thought his language was an issue.
As the dx's came in over about 8 months or so and we started to get written reports assessing him I felt like they were ripping him away from him piece by tiny piece and I wondered what little I'd be left with.

It took a while to realise that really I still had exactly the same wonderful, determined, lovely, super, amazing child I'd always had but that they were giving me the keys to help him further and unpack the William puzzle as we called him.

I firmly believe that grief is cyclical, some days it's closer, some days it's further away. You'll get to the stage where you don't think about it everyday but you'll never get to the stage where you forget.
It's just your new normal - but that never makes it easier when you are smacked in the face by other kids and how different yours is.

Recognise it, honour it, it's real, it's your life and your kid's and you are allowed to be sad about it. But don't sit there for too long, try and realise when you are getting stuck because sometimes you need help with that too.

William's getting some extra help right now and last week the woman working with him commented she'd help him set up a wall planner for next year as she'll still be working with him well into the next year. So that freshened it up for me - I'd thought he was doing okay, came to realise he's dropped well behind again but hadn't thought he'd need extra help for months and months. It's great he's getting the help - but horrible he needs it.

Hang in there - it's normal to be sad when you see your kid so isolated, but trust me, it's worse when they WANT to be part of the group and can't get in. At least he's happy right now - grab the good in the situation where you can!