[meggy1]

Hi just want to know, how the system can be so vile. We have little girl who has many behaviours of hand turning, tip toe walking, delayed speech which has been label moderate, poor or peer play, but will follow direction of guided play with an adult. We were told she is to mild to have label we always knew she was mild but we looking at PDD-NOS as a label as she will need help and it will more as she gets older. i.e child is on just turning 4.

We were told that she would require social training, speech, o.t as her drawing skills are very delayed, i,e won't draw people just scribles. One would think that if they are social training etc there is somthing, so why not label, and i don't think I could of any etter than the doctor and autism speech assessment lady said well we draw a line in the sand some where. It ritual play not observed by three other people that toook and 1 hour for this pointless so call play test, they acknolweldge there are traits which they hope with triaing will go away, I never of anyone out growing it. Also what was distressing from the dr that assessed our girl, was that oh well we will wait another year to see if fails at kindy.

The lady who came and did all the other pre assessments implied who own observation that PDD-NOs would kinda be the label as their is no denying routine driven and also sensory issues, again the three did adress it other she will help for those issue, so if she is getting help why won't they give her label. We are sending our child to a school will very small class sizes and i think they have used this also not provide a label and buying them time, due funding etc. not that she would required aid time , but it is going be very bad as time goes on, as we have regressing time and time again. We want another assessment done but can't affort a private one. What do we do, the dr didn't like when we question the results. meg

This post has been edited by meggy1: 07/02/2012, 10:11 AM

[Soprano-Cat]

If you could back in and edit for paragraphs, that would help. I'm sure BMJ and ladies will be in here shortish to give you advice related to your girl, but as is, your post is very hard to read and understand.

[baddmammajamma]

Hi Meg:

I'm sorry that you had such a crappy experience. I am gathering from your note that your daughter has a lot of issues but that the professionals who assessed her are unwilling to commit to a formal diagnosis at this stage.

May I ask what state you are in?

Who assessed your daughter? Was it a paediatrician and speech therapist? Was there another professional involved?

How old is she right now (I am guessing under the age of 3, since you are posting here)?

Maybe some of us can give you some good advice (or at least lots of sympathy) if we have a better grasp of the circumstances.

The sad truth is that, yes, the higher functioning kids often DO get the runaround during the diagnosis process (and people need to bear in mind that "higher functioning" for of ASD is STILL a serious, lifelong disability), and girls are especially at risk for being overlooked.

This post has been edited by baddmammajamma: 07/02/2012, 12:21 PM

[eleishas]

The traits you are using as examples ie. not drawing people, tip toe walking etc are all very common with that age group, regardless of any label.

I think your Drs are right to want to wait and see if she will catch up instead of labelling her for all the wrong reasons.
You on the other hand, seem very keen.

[blissfulqueenb]

I tried and tried to read this. Even came back twice, but I just can't read it.

Could you do a quick fix up so we can understand better?

[TiredbutHappy]

Hi Meg

Sorry to hear you're getting the run around. It's hard when you know something is wrong, but no one wants to diagnose it for whatever reason

DD had some of the same issues - toe-walking, delayed speech, poor peer relationships. Specialists kept telling me that she would catch up. In the meantime I was paying for therapies privately and running from specialists to specialist trying to get her some help. We were also told to "wait & see", which means we're a year behind where we could have been.

I would suggest you find a good developmental paediatrican who understands ASD. It is expensive, but once you get a diagnosis you'll be able to get assistance to help pay for the private therapies your DD might need. The problem with waiting is that your DD must be diagnosed before the age of 6 to receive the funding. I know of many friends who have missed out simply because they were told to wait and see.

Good luck, I hope you get some answers for your DD soon.

[baddmammajamma]

The traits you are using as examples ie. not drawing people, tip toe walking etc are all very common with that age group, regardless of any label.

I think your Drs are right to want to wait and see if she will catch up instead of labelling her for all the wrong reasons.
You on the other hand, seem very keen.

I have to respectfully disagree. Of course, none of us here knows precisely what went on with the OP's assessment, but professionals overlook ASD all of the time. It is a common theme on the special needs board: a parent knows that something is wrong...the professional(s) assessing the child indicate that there are clear issues that need to be addressed but suggest a "wait and see" approach.

During that waiting and seeing phase, what often happens is that the child's issues only become more pronounced. And then the parent has to go through the very time consuming, emotionally draining, and often expensive process of having their child assessed all over again...

I'm not saying that the professionals here necessarily made the wrong call, but I do think it's important to recognize the very real chance that this little girl has been somewhat fobbed off. She certainly wouldn't be the first!

Unfortunately, in Australia, having the right "label" at the right age can make a heap of difference, as intervention support is hugely skewed toward helping young children.

I think Gumbette's advice is spot on: Meg, I would absolutely recommend going to see a great developmental paediatrician (they are specialist paeds). I don't know where you are located, but if you indicate your city/town, perhaps some of us here could offer some good suggestions.

This post has been edited by baddmammajamma: 07/02/2012, 01:05 PM

[Pup-pup]

I also am finding your post difficult to read. if she's got a moderate speech delay at 2- does that mean she has no words? If she's able to access all the therapy now, then assessed again prior to school or kindy, i wouldn't say she's being left to fail.

This post has been edited by -nic-: 10/02/2012, 07:16 PM

[baddmammajamma]

Nic -- I think what the OP is saying is that the professionals who assessed her daughter gave quite a list of all the things she DOES need (e.g. social skills building, occupational therapy, speech therapy) and quite a list of serious skill deficits, but without a formal diagnosis, early intervention will be harder to access. Girls can fly under the ASD radar screen because the diagnostic criteria has more of a "boy bias" (given that more boys than girls are affected).

Early intervention for kids with multiple needs can be staggeringly expensive (to the tune of multiple hundreds of dollars/week), and the waiting times for public services can be ridiculously long.

When a young child receives a diagnosis of ASD (including "milder" forms of ASD), they get access to a government funding program that provides $12,000 of early intervention support. For a lot of families, that can mean the difference between their child being able to access timely services before the start of school and not.

I am not a fan of professionals doling out ASD labels left and right, but I can appreciate why the OP is frustrated. The system is designed to make it VERY hard for kids without a diagnosis to access support.

This post has been edited by baddmammajamma: 10/02/2012, 07:50 PM