**AUTISM / ASPERGERS SUPPORT GROUP**

[doll*obsession]

A safe place for all members with friends or family with ASD

Come and have a cuppa, share your joys, and vent your problems with other people who understand.

[atmkbjr]

Hi all, havn't been here in a while but I need to share and get help.......

Cut a long story short, suspected problems with mr nearly 6 in Kindy, had vision and hearing tests done, all clear, got a referal to have him assessed to go into the 'learning centre' (basically a separate classroom to focus onproblem areas, get those skills back to 'mainstream' levels and put child back into mainstreamclasses) at school in the following year, his assessment with the speech therapist deemed him not eligible as although he was having problems he was still above the entry criteria levels.

After seeing that speechie she rang me and sid she had been trained in dealing with the autism scale of disabilities and she strongly suspected he had aspergers. I'd never heard of Aspergers before so she emailed me through a 'checklist she had of the aspergers/autism scale.

It went something like this when I was reading the checklists.....

"Hmmmm, autism list, um, no not mr 6, no, yes, no, no, maybe, no, no, yes (etc) - Aspergers list, Hmmm, Yes that's mr 6, yes, yes, maybe, yes, yes, yes, sometimes, yes (etc) OH !"

By this time he was in Preprimary, so I spoke to his teacher, she advised to see GP, get a referal to a psych, which I did.

Again, long story short, psych we saw 4 times, I outlined my concerns, that I was looking for educational support as his behaviour is managable at home, (remembering I don't know how the evaluation process works) In the 4 sessions, which I paid full price for, she did play therapy with mr 6 and said "There are indications in both the Aspergers scale and ADHD but I think he's ADHD, I'll do an IQ test for $300, come back & I'll write up the results for another $300, then go to your GP tyo get a referal to a Paed and look at medication" I WON'T TELL YOU WHAT I SAID !!! Never went back to her.

In speaking with his teacher at that time she agreed we could work together and come up with "battle plans" as such if we hit any bumps in his education, and use our own strategies.

All this time we are also working in collaberation with the school mentors, psych, ed assistant etc, keeping in touch, up to date.

This year there's a new psych at the school. In our 1st meeting she looks through his file and says "This isn't right" so left it with her, she did some reading, consulted with a collegue in Perth who fit us in at short notice (and at a reduced rate because of what we'd aready forked out, thank goodness) We've just this Wednesday finished the the initial FORMAL assessment and surprise he IS aspergers! Then I find out that the woman who told me he was ADHD ISN'T EVEN QUALIFIED TO MAKE THAT ASSESMENT OR DIAGNOSIS !!!

SO - sorry it was supposed to be the short version, but I'm still really cross at the run around, my question is, can anyone tell me in laymans terms what are the best services available, support groups, information, educational materials, financial support (which I didn't know was avail until this week) in WA ??

TIA !:-x

[azureline**]

Hi, we had some great advice from minds and hearts Clinic in Brisbane about what to do, they gave us a list of contacts. They have a website that also may help. We are currently on this road of discovery. :-x
http://www.mindsandhearts.net/
We went the public hospital route but it has only taken 6 months for us to get this far.

[azureline**]

http://www.mindsandhearts.net/images/stories/Strategies_to_reduce_bullying_asperger_syndrome.pdf
The link to this is a pdf, so be warned, it will open if you click on it.
It is about bullying and quite worth a read. 🙂

[timeless_beauty_australia]

Hi all, havn't been here in a while but I need to share and get help.......

Cut a long story short, suspected problems with mr nearly 6 in Kindy, had vision and hearing tests done, all clear, got a referal to have him assessed to go into the 'learning centre' (basically a separate classroom to focus onproblem areas, get those skills back to 'mainstream' levels and put child back into mainstreamclasses) at school in the following year, his assessment with the speech therapist deemed him not eligible as although he was having problems he was still above the entry criteria levels.

After seeing that speechie she rang me and sid she had been trained in dealing with the autism scale of disabilities and she strongly suspected he had aspergers. I'd never heard of Aspergers before so she emailed me through a 'checklist she had of the aspergers/autism scale.

It went something like this when I was reading the checklists.....

"Hmmmm, autism list, um, no not mr 6, no, yes, no, no, maybe, no, no, yes (etc) - Aspergers list, Hmmm, Yes that's mr 6, yes, yes, maybe, yes, yes, yes, sometimes, yes (etc) OH !"

By this time he was in Preprimary, so I spoke to his teacher, she advised to see GP, get a referal to a psych, which I did.

Again, long story short, psych we saw 4 times, I outlined my concerns, that I was looking for educational support as his behaviour is managable at home, (remembering I don't know how the evaluation process works) In the 4 sessions, which I paid full price for, she did play therapy with mr 6 and said "There are indications in both the Aspergers scale and ADHD but I think he's ADHD, I'll do an IQ test for $300, come back & I'll write up the results for another $300, then go to your GP tyo get a referal to a Paed and look at medication" I WON'T TELL YOU WHAT I SAID !!! Never went back to her.

In speaking with his teacher at that time she agreed we could work together and come up with "battle plans" as such if we hit any bumps in his education, and use our own strategies.

All this time we are also working in collaberation with the school mentors, psych, ed assistant etc, keeping in touch, up to date.

This year there's a new psych at the school. In our 1st meeting she looks through his file and says "This isn't right" so left it with her, she did some reading, consulted with a collegue in Perth who fit us in at short notice (and at a reduced rate because of what we'd aready forked out, thank goodness) We've just this Wednesday finished the the initial FORMAL assessment and surprise he IS aspergers! Then I find out that the woman who told me he was ADHD ISN'T EVEN QUALIFIED TO MAKE THAT ASSESMENT OR DIAGNOSIS !!!

SO - sorry it was supposed to be the short version, but I'm still really cross at the run around, my question is, can anyone tell me in laymans terms what are the best services available, support groups, information, educational materials, financial support (which I didn't know was avail until this week) in WA ??

TIA !:-x

Hi atmkbjr, glad you have finally got a diagnosis and you can move forward. Grab the aspergers book written by Tony Attwood, this will give you a wealth of information. There are several versions, try and get the lastest one. Just google Tony Attwood and you can buy it through his website.

As my son's psychiatrist said to me "strap yourself in and get ready for the ride". True words as everyday brings different challenges with these children. I would say first of all get yourself onto a good psychiatrist...I have had bad experiences with psychologists and find psychiatrists to be much more knowledgeable and helpful. Just our experience, you may have more available where you are. Firstly make sure that they specialise in ASD's.

Secondly I would put him into a CBT programme as quickly as you can. Most psychs will have their own programmes that they can do one on one with your son. This is an invaluable programme to help them re-train their brains and cope with everyday life.

Make sure school is on board and you have an understanding teacher. His school will be invaluable in his everyday therapy so you need to make sure he is in a suitable school that is catering to his needs.

Best of luck, it is a tough road but you will be his greatest asset. xxxx

[islandretro]

Just a clarification buying, psychologists are generally the ones who run CBT programmes (and social skills programmes), these are based on psychological theory; Tony Attwood is a psychologist, not a psychiatrist, so the real message is - find someone who specialises in ASDs, who has an understanding of and access to the therapies needed. I have come across paediatric psychiatrists and developmental paeds who are hopeless with ASDs, and psychologists who are brilliant, and vice versa 🙂
cheers
Rae

[timeless_beauty_australia]

Hello Rae, yes you are right, the psychologists run the CBT programmes. We went through Professor Menzies in Sydney for CBT (he is a psychologist). I meant more for your general appointments. I also stated that it was only my experience and I was only saying what happened to us. I also stated that you need to make sure you find someone who specialises in ASDs

As we are in Tasmania help is very limited here and I am sure that atmkbjr would have access to a much wider range of psychs being in WA. The psychiatrist we have specialises in ASDs and also does one on one CBT during appointments if she perceives anxiety is high but every state is different and everyone has access to different things

[sheepy_1-4]

Just a clarification buying, psychologists are generally the ones who run CBT programmes (and social skills programmes), these are based on psychological theory; Tony Attwood is a psychologist, not a psychiatrist, so the real message is - find someone who specialises in ASDs, who has an understanding of and access to the therapies needed. I have come across paediatric psychiatrists and developmental paeds who are hopeless with ASDs, and psychologists who are brilliant, and vice versa 🙂
cheers
Rae

I agree with Island here as to the psychs. We have been through a fair few of them to find the ones which suited our boy. Yes, you do need one who understands the ASD's (we've wasted a lot of money visiting shrinks who had less of an idea than us) and you also then need to find one that your child "clicks" with. This in itself can be an expensive exercise as you may need to go through a few to find one you like. If your child doesn't like them, it doesn't matter if they are the best and most qualified in the world and sometimes this takes several sessions to determine.

We worked our way up to Attwood, which was when we realized just what a difference the "right" psych could make, then when he reduced his work load (we now only see him once every 12 - 18 months - he just oversees everything now, doesn't really "treat" him iykwim, he recommended us to another young lady, brand new she was, and she was absolutely brilliant (did her PHD on ASD with Attwood supervising or something, so really "got it") and fortunately or boy responded well to her. We got to keep her for about 3 years until she won some fullbright award overseas and since then we've "gotten through" but never really found one as good for us, but then things are a lot more manageable these days so not as big a deal.

The thing to point out with all of these shrinks though is that we had to travel quite a way for all of them (about an hour and a half). whilst there are no doubt many good shrinks much closer, these were the ones that worked for us the best so just had to do it.

Last bit of advice before you start on the therapy merry go round is to find a peady with whom you have absolute trust in (once again, may have to look around) and let him be the cruise director kind of thing - let him direct the therapies and have the other specialists report back to him - that way you have one person who has the whole picture, not just a bunch of tests and therapies that a heap of people have opinions about but no one person putting them all together into your child's profile iykwim.

[islandretro]

I know buying, it is hard to find a practitioner who understands your kid, and who can actually make a difference, I am glad you have found someone. We have had a couple of excellent paeds over the years, but with ds turning 18 mid year he will have to move on to adult services (we are in the public system). He is currently in therapy at CYMHS, waiting on appointments for neuropsych testing, I am hoping they all happen before he turns 18 or I am not sure what will happen.
cheers
Rae

[sheepy_1-4]

I should add there that we really only use psychiatrists when he is hospitilized, so have never really had a regular one. For us the psychologists seemed to be what works - our peady only ever involves the psychiatrists when he is hospitilized.

We had a breakdown at 9 which took many months from which to recover and he saw a psychiatrist then (as well as his regular psycholigist) who oversaw his medication for anxiety and depression - at this time they believed he may also harm himself. Once he had learned some coping strategies and we were able to leave the medication behind, the psychiatrist sort of drifted out of the picture and we were just back to our core management team.

Now, we just get the psychiatrist when he slides too far backwards and he ends up in hospital, but this has only been for the duration of his hospitilization (usually 10 days) and then he has been handed back to the care of his peady and core management team once he is discharged.

We got to go to hospital 3 times last year - (but not once yet this year) so fingers crossed that we have turned that corner and gotten things back under control.

In saying all that though, they are now looking at something else that seems to be developing and the peady is saying we may need to see a psychiatrist for that in the near future, but for now, eveything is just fine

[sheepy_1-4]

I know buying, it is hard to find a practitioner who understands your kid, and who can actually make a difference, I am glad you have found someone. We have had a couple of excellent paeds over the years, but with ds turning 18 mid year he will have to move on to adult services (we are in the public system). He is currently in therapy at CYMHS, waiting on appointments for neuropsych testing, I am hoping they all happen before he turns 18 or I am not sure what will happen.
cheers
Rae

Island, my boy is only 15 (well he will be in a week anyway) so haven't had to worry about the 18 year thing yet, but my friend's son had a speech and language impairment and ADHD and they allowed his peqadiatrician to continue treating him on the grounds that he had been treating him for 12 years and knew him better than anyone else. (That was Dr Davies on the Gold Coast). (We see Dr Harte)