Hi gals,

One of my girls Claire has been ringing alarm bells for a while now, and after a talk with DH this weekend I'm intending to stop burying my head in the sand and talk to the gp about getting her tested/looked at for mild autism. We've always had a LOT of sensory issues, lining up toys, delayed speech development, behaviour (playing by herself all the time and spending hours doing one time repetitively, engrossed in an activity so much she doesn't listen when called etc), and we're really noticing the lack of social interactions etc now that she's 3.5 years old. We've recently seen a neurologist as part of her assessment for tip-toe walking, and we've got a hearing test scheduled soon to rule that out (i'm sure that this isn't an issue). I read a document from the ministry of health with the symptoms/signs that they look for, and there are an awful lot of boxes that I can tick off that apply to her. When we saw the neurologist, she confirmed that there are definitely some developmental delays going on, quite mild, but we weren't specifically looking at the whole autism issue, rather just a general developmental issue making sure she didn't have cerebal palsey etc (common presentation of tip-toe walking).

So anyway, I'm not quite sure where my head is at, but I'm feeling more and more like I can't keep ignoring this anymore. I don't know if it is just a general developmental delay, or whether it is specifically a mild form of autism, but I think it's time to get it checked out. So I'll go and see my gp next week and talk to her some more. But what happens next? Is this something that is only dealt with in the public system? Or can I go private? Would this speed things up? Or is this a situation where the public system is better than the private system? We have health insurance, so the cost isn't an issue, but I know that this is going to be a difficult issue to convince my DH to stop burying his head in the sand ... let alone talk to anyone else in the family ... but I'll worry about that later if necessary.

I guess I just want a little advice on what is ahead in terms of testing/checking it out, which specialists/doctors/pschologists would be involved, and what the difference between public and private are. any thoughts gratefully appreciated.

Hi Liz,

I will call you later. I have some names and things you can do.
Hope you are all good....well apart from this.

Hi
If you have medical insurance id avoid the auckland Public health system for psychological issues. Its currently at an 18mth wait.
I recommend Dr Kevin Appleton in Ponsonby. He is a psychiatrist, general practcitioner and a medical advisor for autism NZ. He will def be able to sort you out. He was recommended to me by autism Nz and I wasnt disappointed (having previously spent nearly 2 years going public) And hes lovely
There is quite a bit of form filling to do before you get there (about an hours worth) so make time for that.

Glad you've got some Auckland relevant info Dolphin.

We've gone public with both William's Asperger's and Nicholas' ADHD through the Child, Adolescent and Family Mental Health team.
They did the basic dx for W and then sent us off to a more specialised outfit for help and support.

With Nicholas they did the dx and then started us off on meds etc. The care and management of the meds was a little haphazard and with a variety of things going on for Nicholas we transferred his care to an experienced paed (who is also Thomas' paed). However the psych we're working with for his eating issues is very nice and seems to know her stuff - just this is a bit more specialised han she's used to I think.

Best of luck with it all!

Dolphin - We saw Warwick Smith for DS's diagnosis (so, went privately). The difference for us was 6 weeks privately compared to 6 months on the public system. He was about $300ish but Southern Cross paid some of it back to us. He works out of clinics all over Auckland which helps.

Some people find him too blunt for them but we thought he was brilliant. He was really really good with Nathan, took the time to let Nathan warm up to him etc. He took random notes through the whole appointment which were basically very short observations and those were typed up then sent to us. Weird things like "Head size nomal. Good matching skills. A loner." which made for bizarre reading but still.

All in all, I am glad we went private rather than on the public system. If you do choose to go public though then you just go to your GP and ask for a referral to the hospitals paediatrician.

Thanks so much ladies. I keep tossing and turning about whether it's "just her personality" versus something more. We've been through a heap of stuff with my girls already with food allergies and reflux that I kind of keep hoping it's all just normal and her behaviour is just a result of it. But in my heart of hearts I know it's not nothing, and especially the whole routine issue (any teeny tiny variations, especially first thing in the morning, are a huge NO NO), and the communication - leading us by the hand and throwing absolute wobbly tantrums when we don't do it EXACTLY right (like having to put the blanket on her coming in from the side!!! rather than the front). And we've learnt that we have to give her plenty of warning about what is going to happen soon, cause heaven help us if we try to spring anything on her! She does NOT do spontaneous! all she does is massive meltdowns.

Is it pretty common that children with ASD/Aspergers etc can have lovely, deep relationships with a few people (like us, the nanny, one set of grandparents) where she's talkative, social and really lovely, but then a completely different person the minute anyone else enters the picture. and it takes her weeks of constant contact to trust anyone and even vaguely open up and talk - she just does mute the entire time we're out somewhere new with people and clings to us.

Is it possible for a child with ASD to be like this? To essentially be two different people socially - absolute extremes, and then have these other underlying language and repetitive behaviour and sensory issues? Or am I likely to be barking up the wrong tree?

It really seems to vary from region to region, and also where you start off from. Our experience started with our GP, but I know a couple of families who began their diagnosis process through the Ministry of Education (via referral from their childrens' preschools), without ever really having discussed things with their GP.

We were asking similar questions when we started our diagnosis process, and ended up going with the public system because going private felt like we were going to be reinventing the wheel. The early intervention services here (ChCh) are one-stop shops (ie, they have a wide range of therapists/support workers you can access), and if we had gone private we would have had to find these people ourselves, and co-ordinate them ourselves. Our EI provider is the Ministry of Education, and they also co-ordinate all our support services.

And as to what happens next, I guess it depends on what is happening with your DD, and who refers you where. I'm surprised the neurologist didn't take the ball and run with it, but maybe as you say she wasn't thinking of ASD so an onward referral wasn't on her mind. I think we would all agree that whatever happens, you have to be incredibly proactive about getting help, especially if you decide to go public. The public system is slow, and there'll probably be a lot of waiting around. And sometimes it really depends on your lead worker (in the public system), and how motivated they are to help out.

Best of luck.

We were a little 'surprised' to get a diagnosis of ASD (?hopefully traits?) in our first psych appointment and a referral to the early intervention service, altho we know he has problems, we were hoping for him to tell us not to worry! This was based on DS's history, assess't that day and reports from paeds, SLT and neurodevelop't therapist over the past 18m. Psychologist said to get the ball rolling and crack on now whilst he's little (almost 2 1/2) whilst he continues to assess him more thoroughly.

So, he already has a SLT (thru GSE) which he's just started seeing following on from his hospital one which finished at 2, his neurodevelop therapy stops at 2 1/2 and she has referred him to OT to follow on. The psych recommends some teacher aid time in daycare, thru/ the early intervention team.

Is there anything else I should push for?? Once recommended by the psych, does the early intervention team have to oblige with the teacher aid hours or is it up to them to assess? Didn't think to ask him (see him again in 1m). Just new to all this, well sort of!

Which, if any, support groups have you found helpful?? We don't have family here as we moved from overseas several years ago, and I can see all his peers/friends from coffee group running ahead of him, so just wonder about trying to get to know others socially. Any tips??

Sorry for the questions
Thanks Snoopy

So sorry for the delay.

Anyway, I spoke to my friend. Basically what ABA did to teach toileting was to give the child lots and lots and lots and lots of fluids so that the child needed to go toilet constantly!

As well as giving the child lots of fluids the child was expected to be on the toilet for most of the ABA time/day. During that time you read and played games to keep them amused. Obviously when the child went toilet they were congratulated/praised and I think (from the sounds of it) allowed off for a little bit.

Hope that makes sense.

It does. I'm just not sure that it would work on him. He seems to be very indifferent to potty training despite the praise or rewards. We've got the dvd and booklet which GSE loaned us which amused him slightly but now he's trying to stand and pee into his potty because Tom (the boy in the dvd) stands at the toilet. Of course DS is also sometimes standing saying he is going to poo like that too which is a pretty scary thought!

He's come up on the SLT list now because a new therapist has started in our area through GSE so she will meet with DS and I next week. Looking forward to that!

The routine thing is quite common with ASD. Some parents make up pictures on a chart of how things are going to happen so the child can anticipate it. Like car - supermarket - preschool - home, but also have a "surprise" card in case something unexpected pops up.

Is she not trusting, or just not "interested" DS didn't seem interested in making small talk with new preschool teachers but they just kept saying good morning to him when he arrived each day and eventually it's like he realised there was someone there and actually speaking to him. Now we walk past and he says good morning on his own. Takes time, but they get there in the end!

Well we saw the lovely Dr Kev Appleton this morning, and got a diagnosis of Aspergers/autism. So he's started the ball rolling to get us onto the team at starship to get help from GSE with all sorts of stuff. Feeling hugely relieved now that I know it's not just normal preschooler tantrums etc, that i'm not over reacting or being a neurotic mum. Mostly, just relieved that there is now something I can focus on learning more about how to better help her grow.

Next concern looming though is what/if/how to tell the grandparents .... any ideas anyone? Grandmother works at a high school and firmly believes that autism etc is over diagnosed, and it's really just parenting deficit disorder .... sigh ....

Oh hugs on THAT one! I have the same battle but with Nicholas and ADHD.

DH's grandfather told us that they didn't have kids like William in his day and so it doesn't really exist. DH shot back that kids like W were either in homes so no one ever saw them or they simply didn't survive his his day - W was a prem and wouldn't have made it if not for the NICU.

Maybe just don't tell them for now and see what changes/benefits you start seeing with some intervention and then you can comment positively - oh isn't it great she's happier doing x, y or z (something obvious even to the grandies) - that'll be because of p, q, or w intervention. She's getting that help now because...

Using visuals for W was like magic and everyone noticed the change so it was easier to 'convince' people. Didn't stop my father who did a fair amount of childcare for me in those days, still springing surprises on W and changing things round - and then being left to deal with the fallout. He finally got it when he saw how we handled a change which was inevitable and saw how W didn't lose the plot as he had done the last time he'd had to deal with a similar change. In about 6 months he'd finally got his head around it and we even trusted him to be 'nanny' to the boys on a choir tour in Italy and he dealt brilliantly with a total meltdown going onto a subway in the centre of Rome on his own with the kids.

Anyway - I work on the basis that it's our choice as to who to tell what to - increasingly W these days as he's 12, but it's not something you have to share with everyone, even family.

Question for you knowledgeable ones. This year I'm studying full time and with the girls food intolerance issues and reflux issues (mostly with Jessica who has no autistic issues at all) and so we hired a nanny this year to look after the girls cause we didn't think they would cope with daycare. Next year they'll be 4 years old, and I'll be working full time as a secondary school teacher, so I'm wondering what to do with the girls next year. The options are to put the girls in daycare for the year, or employ the nanny for another year and continue with kindy.

Financially it makes a LOT more sense for us to put the girls in daycare, but I'm concerned about Claire and the effect this kind of stress or change might have on her. Now that she's got her autism diagnosis it's explaining a lot about her behaviour, but I have a HUGE amount of stuff to learn. From what I know a constant routine is really vital, but I also know that she takes a long time to bond with anyone new, and a different environment is more stressful than a home environment.

So is daycare a sensible option? Do I simply expect that there needs to be quite an adjustment period and spend time finding the right daycare with a career that she can bond with? Or is it likely that the stress of not being in her home environment for much of the day is detrimental and will cause more stress and behavioural/developmental issues?

Am I worry about this choice unnecessarily? Will she be ok regardless? any thoughts?

I think it all depends upon your child and their nature

Riley was in a childcare for about 15 hours a week and that is all he could cope with. I too am a secondary teacher and I worked part time. He was gluten and dairy free and that was fine because I supplied all food. He is an introverted boy by nature so did not need any more interaction than that- it was too stressful. We were doing aba at home so he had the rest of the time at home getting therapy.

For us, Riley would not have coped with daycare and made the gains he did before he went to school if he had been there fulltime. He needed at least 1 aba therapy session a day to be stimulated.

He only got given 3 hours GSE help a week at daycare and it wasn't enough so I decided to not work and did NZQA contract work at home until he went to school and settled really well. Now I can work part time in a school and he is flourishing in the routine of school.

if your daughter copes well with change, does not need constant supervision and she is extraverted by nature, then she may cope but if a visually stimulated girl, it may be too much and the childcare ratio may not be enough to ensure she learns the skills needed to start school.

Aries, that's helpful to know! DS is also gluten and dairy free after lots of intolerances. He's two and a half, and diagnosed ASD last month. He started daycare when he was 2, and goes 3 days a week-we have a 4month old who has horrendous reflux/unsettled and it has been a blessing for us all having him in daycare those days. We started him there to aim to settle in before I return to work part time.I think he has come on since starting there-ie a few words, copying others with spoon, cup climbing etc etc but, Aries how did u know DS wasn't coping there? Did staff say, or was he 'worse' after daycare?? I know it sounds mad, but we are wanting to figure out what works best for our DS and just unsure what will work the best as it's all so new! SLT and develop therapist are planning visits there to observe. Any tips should ask them to do specifically?? Thanks

We still have DS in a cot and merino bag as feel his lack of understanding and his routine needs wouldn't cope with change to a bed/blankets at the moment...and with an irritable baby in the house we need to survive!
Just wondering What did others do?? Any good replies to nosey parkers who seem to be judging us?? Feel bad that he is still in a cot as it is, and also have these 'opinions' of friends to contend with. At a friends house yesterday i fed DS2 in her daughters bedroom (2w younger than DS1) and felt tearful at seeing her 'big bed' complete with duvet and grown up things, watched her feed herself, drink from cup, go to toilet etc wondered if we are treating him like a baby too much?? Hard watching the gap widen between him and antenatal group toddlers, despite him moving forward slowly.

Any tips/experiences appreciated

Hi
In terms of 'knowing' if Riley was happy there, it was a gut thing as he certainly doesn't communicate those sorts of things. He was fine to go and do his own thing and play with the toys for a few hours a day but on the long days, he came home and his behaviour was bad. He was more than happy not to go either but with aba, he was compliant and just did it. With my dd, she skips in and interacts with everyone and is quite happy there for 30 hours a week so I am sorry I don't have solid evidence, I just knew with him.

I used to hate what I perceived to be judging but I think people say things to make you feel better - however I used to feel like they were saying I was neurotic and Riley really wasn't ASD- it was me despite more than one diagnosis!!

As far as big beds went, we moved him at 20 months before he was diagnosed (at 2y 3m) because Jemma was coming and we needed the cot. It is a big king single and was high off the ground and it never occurred to him to climb out. He has never been physically adventurous so we were lucky and to this day, he doesn't get out- he yells for us to come to him whereas Jemma hops in and out if she wants something. The lady who is the head psychologist of our aba field is a big advocate that you toilet train and do all those things at the same time as neurotypical kids but you expect it to take longer (not easy with a young one in the house and when RIley was diagnosed, Jemma was 3 months old and had viral meningitis and seizures at birth so we too struggled). So you do the best you can but I would suggest trying to teach as much as possible while younger. Teach him visual cues using pictures to train him into what you want and just be consistent but yes, it will take longer. RIley was not wee trained until 3.5 and just over 4 for poos. Still wets his bed every night.

It is hard to watch some gaps widen. My hardest one and still is, the lack of birthday parties that Riley gets invited to and seeing the invitations in cubby holes at daycare and now hearing about them at school. Allow the grief when you see the gap- it is normal.

As far as people coming from GSE- they know what to look for. Fight for as much time as you can get. We only got a little and then because we do lots of aba, they took it away pretty promptly too so it is a battle to get the help that is needed in these early years.

Thanks Aries!Sorry if stupid question, but what is 'aba' (as I said I'm new here!).

Mmm, i'll be interested to hear what GSE think about him at daycare. SLT planning a visit, as is the neurodevelopmental therapist and OT (we're in the process of him being handed over to OT as now 2 1/2). He seems happy to go, likes the staff. They say he's starting to interact with other kids more, and then goes off again into his own space.However i'm a bit concerned that they let him 'play with keys/padlocks' which is his favourite thing at the moment, go on the computer, help in kitchen and spend time in the staffroom rather than encouraging him to 'play' IYKWIM? We too have the tantrums when he comes home which the psych explained as being 'over stimulated' all day.

That's good advice re the bed etc. I gues we'll have to try-just don't think he'll get it. His understanding isn't great.
As far as GSE they wont consider teacher aid hrs til he's 3....and his SLT started telling us how there's little funding etc and that there are 'blind and deaf' kids etc who need help to even get to daycare implying he may not get any. Grrrr. Had to bite my tongue there. She seemed bit shocked when I suggested we fund help ourselves between now and then, sooner rather than later.

SLT is seeing him every 2w at the moment trying to do PECs, but he's not really getting it yet. Seeing psychologist for second time today (they diagnose here in BOP) so trying to organise our list of questions to ask him.

I'm not sure he's really 'made' friends at daycare yet, but we definately haven't had party invites from there. Coffee group friends do still invite us, and we all usually meet once a week, but it's getting hard spending the time we're all together trying to distract him from opening doors and rearranging peoples electrical appliances when the others are off playing and running around I think they think i'm neurotic too as they only see a 'snapshot' of him (and say he must be ok as their little darling cannot do that with sockets, locks etc), so I know what you mean!

Thanks again for advice. It's really helpful as I haven't spoken to anybody else who's been thru' this and it's a hard time figuring out what's 2 year old stuff and what isn't!
Snoopy

Snoopy - Are you in Auckland by any chance? Our SLT and GSE keep referring to "we just have to visit a new boy on our roll" etc which coincides with your posts... so just curious!

Hi Indirect Poem, No we're not in Auckland, we're in BOP.
Snoopy

Hi

I am new to this forum. My son Oliver (6 years tomorrow) was diagnosed on Monday with Aspergers. His teacher picked it up and paed. confirmed. Never thought much about it before she mentioned it but now feel like it explains a lot.

I just thought I had a very shy, sensitive, quirky wee boy.

Not really sure what to do next, so any ideas would be helpful. Started reading this thread, but need some more time to go right through it.

Thanks

Rachel