So I finally get some one who agrees, but now what?

Evan had his pead appointment today. Based on what I took in from other avenues of "support", what his teacher wrote out for me & my own answers to questions as well as Evans. He was more then happy to say YES he would diagnose with Aspergus syndrome with out further testing. He feels what he has already had done is enough to diagnose. I didn't say it was my thoughts at all but When he asked if I had heard of it & my thoughts all I could think was FINALLY! Some one sees it, gets it! IM NOT COO COO!

He also thinks Evan has a learning block which we still need to work out, but similar to Glenn who he thinks has an Auditory processing disorder (or also Aspergus), He thinks Evan has the same processing issues but with what he sees. So he can read fine but doesn't understand what he reads etc.

He said he would write to the school about both boys & feels Evan needs to work closely with the school counsellor & would put in writing his thoughts & recommendation for both boys. But I kinda walked out & still have no real direction.
He said to come back in a couple of months. But What do I do now? just wait to see what he sends/says to the school?
Im not sure if I got an "offical" diagnosis of Aspergus or not.
He seems to be a excellent pead, great with the kids yet stern & listens to my concerns with out brushing me off etc. Im just not sure if I should have left with more information on the next step or not.... Is the next step him just contacting the boys school? Then what?

whoot finally of getting a dx
it must be such a relief that a medical person has now put a label and a condition name on what you have allready identified in your son
yes get on to the school
in vic there is funding for kids on the autism spectrum- but not for auditory processing disorder!!
it would be worth getting him tested for APD but they wont do that until the chid is around 8 years old
you will need some letters written by your pead stating that he does have a dx condition!
also you can apply for the carers allowance and a HCC for him as well- its not much but helpful still
also getting a speachy involved would be helpful with the auditory processing issues and the school phsycologists
once you are in the system the ball will keep rolling and his dx gets him in the system!!!!
make an appointment with the principal and they will point you in the right directions but get on it sooner than later as there are cut o*** for funding etc !!!
hang in there!!

Who did you see FJ? Tim Warnock I'm guessing? He dx'd DS and he is great at fast-tracking a dx (and understands the benefits of doing so), but I also felt a little unsure of where next after the first appt. If you're unsure, give the office a call and ask for clarification of what you need to do next, you wouldn't be the first to do so.

Can they not do the auditory test til they are 8? Bugger, I didn't know that...

FJ have you seen an OT? I was told you don't need a referral to one, that's one of the things I'm trying to line up, but it could take 6 months here :rolleyes: I would love to have the money to go private.

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Who did you see FJ? Tim Warnock I'm guessing? He dx'd DS and he is great at fast-tracking a dx (and understands the benefits of doing so), but I also felt a little unsure of where next after the first appt. If you're unsure, give the office a call and ask for clarification of what you need to do next, you wouldn't be the first to do so.

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My original referral was with him but I couldn't get an appointment till August! So I have been seeing Dr Messer. My SIL also sees Warnock so I had that recommendation AND A friend who sees Messer so I was happy to go with who ever I could get the appointment with first & Messer it was.

I think I already miss out on any funding for Evan as he is 8 & half. Glenn is 6 & half I think the cut of is 6? BUT Just a HCC would be nice. Appointment today was $270 & I had Glenns which was the same just a fortnight ago so it stings a bit!
I haven't see anyone beyond the pead up here. We did speech with Glenn in NSW but APD was never discussed. I feel every avenue fobbed me off in NSW. So this has been a big plus for moving to QLD, finally getting some acknowledgment that my boys need help & im not some nut case Mum with nothing better to do then read the net & google!
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Autistic Disorder or Asperger's Disorder (not including Pervasive Developmental Disorder not otherwise specified) when diagnosed:

by a psychiatrist, developmental paediatrician, or a psychologist experienced in the assessment of Pervasive Developmental Disorders, and
using the current Diagnostic and Statistical Manual of Mental Disorders (DSM).

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From the centerlink website....
So Would the pead I am seeing need to be a developmental pead... How do I know if he is?


eta - i tell you what it was really interesting reading what his teacher had to say. When I tried to get the same ball rolling in NSW his teacher there gave me her "observation" list. Which was all of a few lines of pretty much nothing.
Here, though, his teacher wrote out a page worth of stuff. Noting everything from his obsession with fiddling with small objects (notably pencil sharpeners?!) & that he is always at the bin sharpening pencils. That he interrupts all the time but in a "joining in the conversation way" yet seems unable to make friends. Gets up & collects rubbish, other peoples things to return them etc. Touches things after being instructed not too. Keen to be helpful yet doesn't wait to be asked or instructed & will just take it upon himself to do & often crosses boundaries in doing so. Jumps ahead & starts/tries to complete a task before listening/reading/following instruction & just guesses what he needs to do. he will often make inappropriate noises while working (now this is something that made me go "really?!"). Likes to play with lego at free time but doesn't share with a group & gets upset when its time to pack up & will often sneak bits back to his desk to fiddle with etc.

It went on but I was so thankful that she was so detailed & actually did realise that yes there is a problem.
Its just so nice to have people who are in a position to actually help agree that we need it! This has been about 4 years in the making!

Wow... what a relief? But it is also confusing.

A behavioural paed would be best. Also, while you are at it, google Temple Grandin's stuff... she has some youTube vids of her lectures where she describes the visual perception issues associated with ASD. OT and/or behavioural optomotrists help with that.

I know for me the first few months were the most confusing, and as you are going through MORE than just this, take it easy. Dedicate time for just investigating things. I spend 1 hour a week researching things associated with ASD and SPD. It takes time, but if I have it, I can spend it focused on that.

We have an appointment with a behavioral optometrist tomorrow.

I feel like even though I have been chasing this for so long I have no idea what I need to do now I have it!
We also have a P/T interview with both boys teachers tomorrow.

There's a number of little support groups in Cairns, if you Google them. Then you can get in touch with other Mums about local advice and how to access services.

Also on the letter, get the doctor to write that DS has been diagnosed with the "Autism Spectrum Disorder - Asperger's Syndrome", my knowledge might be out of date, but having Autism on the letter can help access certain services at times apparently.

When you get the official diagnosis, you actually get a letter from the Gov stating your diagnosis. Its important to keep this for Centrelink (carer's allowence) and medicare (health care card). HTH

hmmmm so should I call the pead's office & request that now? Or wait till the next appointment in June?

Ah school just called. I need to get a few things done before they can start there testing with glenn. Hearing & vision, both where don ein November so I have those sorted. I have the vision side with Evan tomorrow & have booked a hearing test for the 3rd of may.

School Councillor said to contact Autism QLD also. So thats my next call.
Oh I also said I was concerned about Evans performance with things like the NAPLAN coming up in May. And how doing it, & him knowing he isn't doing well would effect him. After all he isn't stupid, he knows he is having issues. She said just don't send him to school that day! LOL. Evan would love that. But we'll see what his teacher thinkls. Take it as it comes.

hmmmm seems there isn't much once your child is over 6.....

Sorry I have no advice or anything, DS1 has only just turned four (we've had a diagnosis of SPD (he has issues with all sense processing except visual) since 20 months old and a diagnosis of PDD-NOS for 3 months now) It can be quite confusing on where to go now, but hopefully you find things will fall into place.

:hug:

well, just back from his appointment with the optometrist. I wasn't the behaviour side of it, just the normal vision exam. Anyway his eyes are still the same, some focusing issues but teh glasses he has (refuses to wear the most of the time) are still fine. Thing is though, He has the behaviour side appointment next tuesday. but today the guy (who does it & seen him today) didn't really seem like he thought he needed it. I told him of our recent pead appointment & his thoughts with Asperges & the visual processing disorder. But he said that Evan worked well 1 on 1, didn't seem to have any social issues etc & does he have any ADD issues? So obviously he doesn't think its Asperges at all. But I thought who are you to question me, his mother & the pead?! Yes he workes well 1 on 1 & doesn't appear to have any social issues. He does come across as very outgoing WITH ADULTS but the boy has no friends his age, is unable to make friends & doesn't understand why.
Gah, its really left feeling like I am going to be wasting my money next week.
Im sick of people thinking he is fine & questioning my concerns. **** I have 5 kids (almost) do they really think I have time to be stuffing around for the "attention" ?! I am following up avenues that have been suggested by those who interact with him most. Im not about to spend my days filled with appointments we can't afford financially or time wise just for fun!

FJ - welcome to the world of ASD, I've heard it said so many times that its not really there, that its a behaviour thing, or that they are "normal" and it is a parenting thing.... when you start having other children, you notice and know when something is "different"

you know whats funny. When Evan was a baby/toddler we use to joke about how "domestic & industrious" he was. But now I can look back & go hmmmmm yeah not quite the neat freak we thought. Well it wasn't the reasons for it.
Iain is also like this now. He is very similar to Evan as a toddler actually BUT the big difference is Iain is affectionate where Evan never was. But Iain is very particular about things. He likes things to be where he thinks they should be.
Evan now, can't keep his own things tidy but is particular about other peoples things. he spends his day at school picking up other peoples belongings or rubbish etc, yet his own desk/area is a mess.
But hey, He socialises well with the optometrist. So he must be fine. I wonder if I can get his address & arrange a sleep over because obviously he can be Evans new (who am I kidding, new? ONLY) best friend! Yay! all his problems are solved.

I remember when we were going throught stuff with M and you would say "Evan does that"....

Oh I have thought this along. but got fobbed off by everyone in NSW. Everyone except the one person who wasn't in a position to give his opinion. His counsellor. He often asked if I had thought of Asperges & we spoke of it often. But Unfortunately he wasn't in a professional position to give us what we needed.

I did start to doubt myself though after everyone kept saying it was just his anxiety.

We just had the p&t interview at school for both boys. Poor Evan. He is doing "ok" not great but ok academically. But socially they are concerned. Apparently he spends his lunch/play times hanging around the classrooms which are locked just waiting for the chance to come in. Even asking to stay behind & do work when other kids are being punished by missing out on play & finishing work. He just doesn't want to be out in the playground with other kids.

What about bringing in the school psychogists? Time for some heavy guns I reckon!!!

We have the ball rolling for that. Well the counsellor anyway. But paper work has to be submitted, referrals sent, hearing/eye tests done etc etc before the school will do any of their own assessments.

that is insane! the psch is the one down here that organises all the other referals!! get an auditory processing hearing test done- not just an ordinary hearing test!!!! the auditory processing one goes for 90 mins times 2 sessions!! pretty intense but oretty accurate!! our school psch got us on to them!!

We think its Glenn with the Auditory issues but im not sure. Evan we think is visual.
Glenn is actually doing well at school apparently. He is pretty sound in most area's or slightly above in others. Still all new & figuring out the next steps.