Autism Spectrum Assessment... *bit of a vent*

Tomorrow (Friday 3/12) a team is coming out from Perth to do Brendan's assessment.

I'm not nervous about it, fully prepared for what the day might through my way. Tomorrow is just another day in our life but the outcome could mean an easier year next year for Brendan. As much as I don't want him to be diagnosed, fact is without it he doesn't get a whole lot of help. I had been told that Brendan will get an aide for school next year regardless of what the outcome of tomorrow's assessment is, however a few days ago the school rings to tell me that he will only get one if he has a diagnosis.... devastated doesn't quite some up my feelings. I have fought so hard to get Brendan to where he is, I have fought so hard to get them (therapists etc) to listen and now it might just fall apart anyway!

All along I've been told that having a diagnosis doesn't matter he will still get help he needs. He needs an aide, he needs someone to sit by and tell him in his language how to do things, when to do things and he needs to be constantly reminded to go to the toilet. He needs someone to keep his sensory input up so that he can even function properly. I wish that Sensory Processing Disorder was recognised....

Why can't things be a little easier :( I'm so drained from fighting things all the time!

Anyway, just thought I'd update for those interested. Will let you know how it goes later tomorrow :)

Hope it goes well for you Sally - thinking of you and Brendan.

Thanks hun xx

my friends little girl has sensory processing disorder and she had a full time aide for kindy (public school in Joondalup) so I dont understand why you would need a diagnosis, this little girl is turning 6 this month and they still cant get a definative diagnosis for her and she has been tested for autism, CP and other things, all to no avail. All the best for tomorrow xxx

Oh thanks Clare!!! That gives me some hope :D I'll have to have a chat with the LAC with Disabilities Services and see if she can do something for me. :D :D

Sal, I'm so sorry you have been told the wrong thing. B absolutely needs a dx to prove he needs an aide. Aides need to be trained and they need to be paid and unless you can privately fund one, you need to show the Gvt what help he needs and how much. WHO told you this? They need to be set straight and fast, imagine who else they are telling this to. Aides need to be sorted NOW for next year, so although you don't want the label...you kinda DO or else he will have a hard time at school and no one wants that.

YOu have to get used to the label thing. It only lasts long enough to get funding etc. Other than that it's just a word..or a jumble of letters :lol:

One thing is for sure - if he test positive for autism he should get an aide. If it's Aspergers he certainly IS NOT certain, because it depends on the level of blah blah blah. If he has speech issues that is actually a good thing when it comes to funding. My DS cannot get an aide on the basis of Aspergers because he has no speech/verbal issues. He still needs heaps of help transitioning from activity to activity.....so we have to go for funding based on "severe behaviour issues" which was a kick in the guts at one point but now I don't give a rats as long as he gets help. He won't need it forever but we need it at the start.

GL with everything, I hope you do get a dx because it;s the best thing in the long run. When he starts school you will notice how many Aides are in the classrooms these days and it's no big deal to anyone else. Kinda run of the mill really. I don't expect you to be cheering about it just yet. Classroom aides are the new black :lol:

Clare - it is probable your friends daughter has been given a dx of PDD-NOS which means Pervasive (I think) Developmental Disorder - Not Otherwise Specified. This dx ensures funding under the Autism umbrella.

Thanks Lulu, I have exactly the same thoughts. I do want a label for the help.

anyway it's late, I'll check in tomorrow :)

Thanks again x

We don't know if he got a diagnosis or not, won't know for about 6ish weeks.

He is definitely on the spectrum, but sits in the "grey area" (which means it's not Autism or Aspergers) if he scores above the cut-off he will get a PDD-NOS diagnosis if he scores under the cut-off he doesn't get a diagnosis at all.

So that's where we are at :) The day went quite well, with Brendan displaying many of his little quirks. Both boys were well behaved.

I'm quite annoyed that many things were discounted because "it's could be a prem thing" I am seriously over hearing that phrase.... I just want help for my little boy who struggles with day-to-day life. I don't care about labels or diagnosis, I don't care about not fitting in all the boxes, fact is Brendan has always defied the odds. He shouldn't be here, the team of Dr's and Nurses at the local hospital sent me home to miscarriage him, the team at KEMH told me the worst at 28 weeks, the team in the delivery room told me not to expect him to survive the first few hours. He keeps defying the odds and now he might not get any help at all. Why do they keep doing this!

Sorry for the vent... I do understand how it works, doesn't mean I have to like it.

I don't know much about this stuff hun, just wanted to offer a hug :hug: Hope that you get the outcome that you're hoping for and your baby gets the help he needs :hug:

Fingers crossed the specialists will oops move their pens accidentally so keep him in the clear for an aspy dx! If only to ensure funding......some of them do that you know :lol:
DS was very unclear too, in fact for a long time we still weren't sure but the 'experts' could see he would need help no matter what. We would have been stuffed without it.

The uncertainty's tricky hey, but I guess it's positive that it's taking time - it's good to get it right, whatever it is. You might find that your paed will be happy to state that they have a suspicion about something, which means you might get some funding while you clarify what the issue actually is. xo