Autism network/help in NSW or VIC ....

[smiles4u]

Hi all,

I spoke with my favourite & wonderful Auntie the other night & she told me that her son had recently been told by a specialist that his 4year old son has autism ... the specialist handed over to the Mother some paperwork & said " Here, this is so you can get a carer's pension " or something to that effect (??)... and nothing else was said or mentioned as to what to do from here.

I asked my Auntie had any tests or something of that nature been done ... she said no it was the specialist guessing so (sorry may not be the right wording there)

Her son lives in NSW (but just over the border of Victoria).

My question is are there steps that they should be doing and where can they go to get a better understanding, support network, etc ...

I personally have absolutely NO intentions in getting involved as it's obviously not my place to do so ... BUT my Auntie kindly asked one thing of me that is if i could find out ' for her ' as she herself would like a better understanding & she wants to encourage her son & DIL to further their understanding, etc .. also for the benefit of their son.

Thanks a million for any kind replies & suggestions

[christy]

Hun get him to contact ASPECT or Autism Australia. They are in NSW and have a parent helpline with heaps of information. I have found them to be helpful, you do have to phone and leave a msg and then they phone you back. But they have a lot of information as to help at their finger tips.

A few things:

1) for sensory issues go to an OT. With a diagnosis they are entitled to financial help for OT appts etc

2) if TT is an issue, and the child is over 5, talk to Blue Care re: incontinence help. They have heaps of help as far as free pull ups, dry nights etc.

Thats all I can think of ATM, there's heaps of info out there. You just have to look for it yourself, ykwim?

[smiles4u]

Thanks Christy ... that's helpful & a good start !!

I thought to google but didn't know where to start & thought maybe somewhere here on BB with personal experience could steer me in the right direction without my mucking around & wasting time as my time is limited

Thanks again

[~Raven~]

Tell her to go back to the specialist (mine gave me a contact for our local support group) or health nurse and ask for the contact for some local support groups. Like Christy said ASPECT is a great help too.

Hearing third hand info isn't a good thing in many cases and I'd say so especially in this case. I commend you for trying to help but please tread carefully.

For the benefit of Grandma (and please show her this post as it might help her to understand a few things):
Did she mention where he is on the Autism spectrum or his CARS rating? From what you've said he'd be classed as high functioning which means he can talk and do a lot of things for himself so that is a great thing!
A diagnosis isn't all gloom and doom either. It is an opportunity for him to get the help he might need in the future.

My son has high functioning Aspergers which is on the edge of the Autism Spectrum. My MIL (and my parents to an extent) strugged to accept our DS's diagnosis and said very similar things. A lot of "yeah but he does this's" which drive me bonkers.

How does he react in a formal education situation and how does he interacts with other kids? He may go to the same toys or do the same routine at kinder every single time and have a melt down if the teacher changes the room. Quite often at pickup DS would be hiding under a table because they tried to get him to do something different. Kinder photos were a nightmare.
The specialist takes a lot into account of what is said by his kindy teachers and what they observe.

What quirks does he have? Eye rolling, finger flicking, routines, accents when he talks, food texture or colour preferences etc, anxiety, toileting, touching people, no sense of boundaries, no sense of appropriate conversation...
A second opinion is a good idea if they can face through the testing again. It is very stressful though and I understand why they are reluctant. When he starts school and if they apply for funding for him for a learning support person (or aide) then there is more testing. This will really show if the original diagnosis was right. It's not one thing but the sum of many that leads to a diagnosis on the spectrum. What is dominant as a 4yo may change to something else as a 6yo. It doesn't mean the original diagnosis was wrong but the child may have matured or learned how manage his urges if that makes sense.

Just recently I took my son to a specialist for a physical ailment that might require surgery in the future, and when I told him he has Aspergers he said he could tell as soon as he spoke and had in fact already written it down in his notes. I've had a bonus 3rd opinion lol.


Maybe she needs some time to absorb it herself before charging headfirst into what she needs to do for her son. I know I did! Give her space and tell the rellos to back off a bit.

ETA this is a bit of a ramble isn't it. Guess it touched a nerve

[smiles4u]

Thank you ever so much Sam for all that wonderful source of information

... I will certainly relay it to my Auntie when i speak on the phone to her next. We live on different sides of Vic so is too hard to visit each other & she doesn't have a computer or the knowledge to use one

I have never met her grandson so i don't have any other answers in regards to him as such other than he is a beautiful & adorable grandson to her & she wished she lived closer to him

I don't have any intentions in getting involved as it's clearly not my place to do so ... but the only thing i will do as my Auntie kindly asked of me is to find out more information for her to get a better understanding & also she wants to encourage her son & DIL to find a support network, etc ...

I have adjusted (edited) my thread above as i felt i hadn't made myself clear in questioning so hopefully it will be more helpful to anyone else that reads it

Thanks again Christy & Sam for being so thoughtful & kind in your replying ... it is such very helpful information for me to forward on to my Auntie

P.S - SAM just as you mentioned & i'm so glad you bought it up ... I didn't want to touch on a nerve in anyway that's why i made sure i was asking in a very gentle & extremely kind manner as it would be way out of character for me to do otherwise ... i'm a deeply caring person (too nice for my own good sometimes )

[~Raven~]

I thought your questions came from a place of concern and wanting to help. Good on you for wanting to help, I think it's great I wasn't upset but I am passionate about educating people about kids on the spectrum. I find myself doing it a lot.

Now that I see you have changed the wording of your post a tad, the same thing happened in which we left the ped's office armed with paperwork for a carers allowance with no idea what to do with it. I guess that's where she can have a think about where they may need some help.

A specialist guessing...well in our case the ped knew he was on the spectrum almost immediately. So he DID guess but then his guess was confirmed with a succession of tests to create a rating for his diagnosis. A good specialist should be able to tell from first impression IMO!

[smiles4u]

Oh, you are just so lovely Raven ... yeh, i was pretty sure i hadn't but had that concern of doubt too ... so i now feel so much better that you mention i hadn't for sure

No where near the same subject of concern but i kind of understand your educating people as i'm the same when it comes to the subject of breast cancer & helping people whom want to know

I'm so glad you are so open to discussion Raven as it opens the doors to those like myself that truely don't have the arm full of knowledge on Autism.

My only contact is a boy at my DD's playgroup whom most parents there seems to shun her son being autistic & some have made comments to me that have made my blood boil. Simply because at some point he might start to throw things but i have never witnessed him harm another child. So, one day i went up to his Mum & asked her very politely without imposing if she would allow me to help look after son at playgroup at any given time to give her a bit of a break BUT if it was OK with her & letting her know that i had at least taken notice she has a different way in controlling him as i would my own DD & if she is able to tell me anything i am to do or more importantly not to do ... she looked at me with tears in her eyes & said no one had ever at the playgroup been kind enough to offer or at least take some interest & ask about her son. I have noticed a huge progress in him in the past 12mths ... i was hoping to ask her for some information for my Auntie but she wasn't at playgroup the past 2weeks. Also i guess i didn't in a way want to ask her if she may not want to talk about Autism ... and i thought if i put a thread on here i wouldn't be imposing on anyone ... members could reply at their own will.

Thanks again lovely ladies ... i now feel i can give some source of information to my Auntie for her to take it from there !!!

Hugs to all that replied, was so lovely ... kind regards Lorelle xox