Aspergers/Autism/Sensory Integration Chatter

Thanks Sam. I think that's the clincher for me, the "little differences". Things that don't seem to mean much but when you consider there are a few of them maybe they do. Then having my friend say he's just like her son. And of course the carers constantly asking about whether we've booked him or not - they obviously think it might be something. There seem to be enough signs. I can no longer just tell myself it's just because he's bright. It might be, but I can't be sure.

I have decided to definitely try and bring it forward. I need to know. And I need to know before I choose a school, and at some schools he'll have to enrol by mid next-year. So, wish me luck, I will call Maria tomorrow.

Very very frustrating. No diagnosis, but not letting us go either. They want further assessments done to diagnose. Apparently she was very Asperger's today, but they were disorganised and didn't compile all the results and talk beforehand like they were supposed too. So we have a definate diagnosis of Sensory Processing Disorder, but maybe PDD-NOS or maybe Asperger's, they want further assessing to be sure. We are moving to Sydney in a week, so they suggested we start all over again there. :(

:hug: Oh no Christy. I really hoped you were going to get something more useful than that.

I hope you are ok hun.

Oh Chrissy honey that sux big time!
can you ring from were you are now and see what is available down there? Can you book in with your MCHN or something already to get the ball rolling?

Im feeling very under appreciated atm....Wilhelm is in a I hate you mood and everything else is jsut BLAH

Yes Christy a referral from the Mater to somewhere down in Sydney would be handy... it would be good for them to give you a copy of their files/records to take with you...

I've got the OT assessment at least with the diagnosis of SPD and I have the physio report with the low muscle tone and right sided proprioceptive deficits. So at least I have those. They have said they will compile stuff to bring with me and post it to me, so hopefully that will help.

Id get them to 'find' the best in Sydney before you head down there hon...make them work for you ;) use the line babe

Oh Chrsty - that is cr@p! I can't believe they suggest you start again down south! grrr dr make me mad. Ditto on making them find you a similar program down south AND get them to send Matilda's file. We get copies of all Xanders assessments and corrospondance between prof. as we move so much, I want a comprehensive file to take where ever we go - we call it the X file :-)

Mel - :hug: You sound like where we were about 2 yrs ago. DS was exceptionally bright and the light of our life. Occassionally we would pick him up from daycare and they would say he had a sad day but no more was said. When DS was 4 we applied to get him moved up into Prep early (change of age rules in QLD meant otherwise he would repeat kindy for 2 1/2 yrs) His kindy teacher then told us she wouldn't recommend it as socially he wasn't coping. This was news to us! He never ever had a tanty - not even during his terrible twos, however we know now that that ws simply because we had such an ordered routine at home and school that he was rarely under stress. With the move to Townsville and with him getting older and lots of changes to routine (new baby, me not working) what was quirky, cute and gifted became odd, disruptive and a concern. I think one of the big things was a lot of his quirk that were acceptable at 2-3 were no longer acceptable at 5-6. Although we had seen the MCHN at 1yr and 2yr when he was displaying strange things like no language, obsessive about order of toys and set out of his room etc we were told not to worry and it seemed they were right, he did begin to talk eventually in great huge sentences (although hard to understand) He now talks incesently about what ever his current obsession is. He still has meltdowns when the order and routine or rules of his world are challenged but the label of Aspergers has honestly set us free. It has helped me to understand his world immensly!!! When you read about sensory processing or listen to someone else who has autism (try aspect dot com dot au) you can understnad just a little of what their world is like, and it's not bad, just very different to how we understand the world - and they are very happy living in their world so really its just us that have the probelm :-) (or so I've been told by a lovely lady with aspergers) I completely agree with Maz, you do need to give your self time to grieve about what it means to have a child on the spectrum but... Xander is still the light of our lives (along with his sister) he brings us hours of joy and amazement and has really opened our eyes to the world around us. (oh sorry for the huge post - I think I have a bit of aspergers too :-)

Yes we are all for ASD playgroups too!!! Xander and his cousin are both on the spectrum and even though there is 5 yrs age difference they get on like a house on fire. I think it's great to catch up with other parents on the spectrum as they understand your kids and I'm not constantly apologising or managing DS behaviour.

We have had an interesting start to the week with the birthday party on Sunday. We lasted the whole 2 hrs without a meltdown! we had a few close calls but we made it and had everyone just packed up and gone home when they were suppose to it would have been excellent but... we lingered and disaster struck, he tripped over a rope and that was the straw that broke the camels back. Since going off dairy he is hypersensitive to pain and just lost the plot, his friends were very understanding but not the best in building relationships. Monday we had a relief teacher and today the bookfair so he is boucing out of his skin at the moment. Fingers crossed for a more settled end to the week.

I've phoned a few places so far. I've got Matilda on a public OT's waiting list which is my first step. The Autism Australia is located 150 metres from our new house, BUT.... and a huge BUT... its $750 for the assessment. The wait is until January, I put her on the waiting list today anyway. For public assessments which I have her on the waiting list for... April. So its a matter of what to do and how we are financially after the move.

Hi Christy,

i have seen the autism assessments costs too and baulked at it but honestly we have paid way over that in OT assessments, Speech assessments and paed appointments going private (waiting lists are too long in Townsville)

Christy thought of you after I had a meeting on Thursday with Masons aide, teacher and principal (called PSG - Program Support Meeting).
He has been kicking other kids and they think that is because he doesn't know how to join in and play and can't get any words out due to his anxiety about that social pressure stuff. Made me think of Matilda running up to her friend and punching him.
They are going to work on creating play scenarios with groups of other kids which will teach him how to join in. He responds really well to that kind of therapy and the goals that were set for the last meeting which were waiting his turn and learning to lose (one of his big issues was he had to be first at everything) have been achieved after one term!

Thats great, I will store this up in my mind. Matilda has to be first as well. She kicks and hits the other children if they get in front of the queue to get into her classroom. Her teacher said to me a few weeks ago that it is very important for Matilda, sometimes she stops playing when she sees the teacher walk outside with the bell to run to the classroom. Sometimes she stops playing 20 minutes or so early in order to stand at the door to be first.

The Sue larkey conference had a little section on our 'firsties' (Xander also likes to be first although they have been working on it) Things like "first of the next group" or numbering 1,2,3,1,2,3 and we have some social stories on learning to lose also if you need them.

We , actually I had a bit of a teary moment the other day. His early intervention teacher dropped round an invitation to a Christmas Party ... for special needs kids, you know the Golden Casket one. It was a bit of a shock to find us in that category if you know what I mean. At first I just thought no we won't go that's for kids with real problems but then I realised how much he misses out on and how much fun he will have and we can meet some other families on the spectrum so I think we might go - unless I chicken out.

I read a saying on an ASD board once, 'if you've met one child with autism, you've met one child with autism' - as opposed to having met one, met them all.

I thought it was good in summing up that our kids are all different. Alex doesn't throw tantrums, but he needs to be to 'preped' about new things coming up. We talk about it beforehand and he always takes a book or a train along.

He is 3 this month and we have a paed. appointment at the end of the month. He has a lot of little characteristics that don't sit right. He goes to a regular creche one day a week and loves it there. He sings and dances there and comes home with new rhymes. But he does not like the radio on at home or in the car. He doesn't like loud birds, the vacuum, hair dryer, washing machine.

He has an OK vocab for his age, but he repeats almost everything you say to him, like he's taking it in and thinking about it, you can almost here him ticking over searching for a response and sometimes the repeat is all he has.

About kids with ASD clicking with each other - we went on a bushwalk with my daughters' joey (young cub scouts) group and there was an 8 yo boy with sensory issues on the walk. At the end, the joeys and siblings played on the playground at the start of the walk - this boy, Declan was pushing my Alex on the swing for 20 minutes when he came over to me and said 'i want your phone number - i want that boy to play at my house' and he was talking about alex who was three months off turning three. Out of the 30 or so kids, these two hit it off.

That is such a good saying Barb! One think that irks me (even from my own mum) is that people say " I know so and so that has a child with Autism and Mason is nothing like that". For their similarities they are so different.

Ok Ladies... Have some questions.
Maz, you are already awear of the situation with Evan. But for others here is a quick run down.

Evan is 6, has been showing signs of Anxiety for some time now. We new this was something that may pop up as DH is also suffering from anxiety & apprently there is a long list of men on his side of the family who have also suffered in silence. it only came out when Simon came out about it.
I have posted a few times about Evans behavour in other threads. Again basic run down, gets very frustrated, has some rather full on spaz attacks, often hitting, kicking yelling screaming etc.
It got so bad about 2 or so months back I was in tears most days after he went to school. Only for him to melt down again once he was home.
I spoke with his teachers who were surprised to hear of this. He is a lovely student, coping well at school etc etc.
I requested to speak with the school counsellor who acknowledged his behaviours at home as being anxiety related & that he is working hard to keep it together at school but then melting down at home.
We changed a few things at home & seen an improvement in his behaviour.
But now we have issues with school work & the concern he isn't doing well is becoming more true. He has trouble with his home work, reading, spelling etc.
I again mention this to his teacher who agree's he isn't reaching his potential & thinks its a lack of focus. Says he is very easily distracted in class & she can tell he is funny if the routine is changed.
Same day the school counsellor calls & asks how he is doing. Says that the form I filled out last time we spoke does have some markers for ASpergers. But she thinks its related to the anxiety he clearly is suffering with. Suggested he watch him into the new school year & see if those things develop any further & take it from there.

So now your somewhat up to speed.

Here are my questions. DH has been seeing a psychologist for his own anxiety issues. Obviously he has been discussing Evan. He said she said we should look at having him assessed ASAP.
said that we should be able to arrange this through the school.

I don't know what path I should be taking, the school counsellor has already said lets wait & see. The psychologist who has never seen Evan, only going off what DH tells her says getting him seen to ASAP.
Now Can I go to my GP & explain our concerns. Who am I meant to see to have him assessed?
the SC has already said there is very little around for kids his age, its starts with kids 8 & up.

I just have no clue as to were I should start. I thought the SC was the best place to start but then I have others saying No you need to see your GP & get a referral, but a referral to who??

When I called around for help a few months back I kept getting pushed onto the next person. "Oh we only deal with kids up to 3, call so n so.. Oh we only deal with kids up to 5, try so n so ....

So I am a little lost as to what we should be doing & then I have DH breathing down my neck asking what I have done to get things moving... But I don't know were to start.

Hi Ladies,
I have been reading your posts with great interest, my darling Hamish had a small assesment with a nurse yesterday and she brought up that he may be at the small scale end of having Ausbergers.
Now his kindy teachers discussed his behaviour with me before then decieded they didnt think it was to much of a worry , although my girlfriend who works at the Kindy is saying i should look at having him assesed.

Hamish is a bright child and becomes easily bored, he now speaks quite well he was 2 before he really started talking, although he has a slight lisp.
When he was 7 months old we were concerned about him as he would throw his arms back if you went to touch his hands and would cry if you touched his feet, he was diagnosed with having tactile sensititvity, he is alot better but to this day will take his socks and shoes of so many times before they are right, often in the morning he will sit and cry because his shoes dont feel right.
When he was younger all his toy cars had to be lined up in an order, he isnt to bad with this anymore.
He loves Thomas and can tell you every number and name of the train and what they do, he can build great big tracks and play all day with them.
He does not like to be crowded by other children, and would rather approach them then have them come up to him. He can be sensitive with play and he does not like his routine to be upset. He has little break downs at kindy where he will cry, he is not a temper tantrum kid but will go sook or cry.
'I am not sure where to go from here.

FJ if you go to your GP you can get a referral to a pediatrician and the ball will roll rather quickly from there. The first couple of visits are quite intense as there is a lot of questioning and testing. It is also a bit costly but it does to toward the safety net. :hug: I understand how hard it can be at home and frustrating when they don't act the same way at school.

Hi Tania and welcome :hug: At kinder here (could be different in SA...) they have what is called a Field Officer who looks after the region and is support for the teachers. They are also more trained to spot issues in the kids that might need help. As a first step you could ask the kinder teacher if there is some kind of support available for him to be watched in the kinder environment and request that they do so. Ask the teacher to write a report of the things that could be potential issues also and then you can take that to a pediatrician also.
As Masons diagnosis was made through the kinder year that was how it was started for us.