This thread is for all you parents with children with ASD. Please feel free to come here even if you have an undiagnosed child, but want to know more about it all (as I do).

Well done 205!

I have an Asperger's child - now 11 but dx'ed around 4 years old so we've been through the hoops a little. Tried a couple of schools but in the end found homeschooling works best for him.

Happy to help people through our experiences!

Hi Eleanor,

Thanks

As you know we haven't got a dx yet (though I strongly suspect Asperger's), waiting on a clinic later this year to see if we can get one then. I'm wondering whether you guys had to try for a diagnosis year after year or did you go straight through to 4 and then get him dx'ed? I have a strong feeling that 4 is about the earliest they will be able to say anything certain about Tornado, and don't want to get my hopes up for the coming appt.

Hi

You probably won't get an Aspergers diagnosis but an ASD diagnosis. Aspergers is likely to be removed from the DSIM V (think I got that right) and be High Functioning Autism (HFA) and Aspergers is not normally diagnosed until after at school.

But, we have always known that Riley's ASD is Aspergers. He is just past 6 and he was diagnosed at 2y3m. He is an amazing wee boy and we have worked our butts off and more often than not, we are reaping the rewards of that hard work (except when last week, he could not accept that we pretend his sisters birthday was on Sunday- BIG dramas over that one! "But she is not 4 for another 4 days and she thinks she is 4 and she is not 4" etc....)

At the moment, I get to sit on my butt while he is in the lounge having some aba therapy (and bless the therapist's soul- she is including Jemma too- lucky me )

William was a bit different - having been prem and having some recognised delays he was in Early Intervention here from about 2 years old when he didn't do the magic 'catch up by 2' that prems are supposed to do.

So we knew there were co-ordination and sensory issues plus a speech delay which righted itself. We went through a phase of picking up different dx's before the centre closed down and he got referred on to the Child Development team. There were some glitches in that process and we wound up at CAFS where a through assessment was done and the AS we had suspected for a while was confirmed.

He's a lot better now than he used to be - spinning and flapping almost a thing of the past except for under very high stress - he disappeared to the bathroom to spin before going to theatre for a recent endoscope test!!
But we're working with Tau Toko at the moment and I'm realising that the goal posts and issues just keep moving as they get older. Some issues receed and others rise to the fore. Just because you can't SEE the issues - like spinning - doesn't mean there aren't issues still going on. Harder to keep tabs on in some ways!

M got a diagnosis at around 5, of being on the Autism Spectrum...her diagnosis was based on that she didn't talk, 'cept she started talking just after she turned 5 and hasn't stopped! She started talking in sentences, not just single words! She had a suspected stroke at 9 months (I say suspected - GP sent us to hospital quering a TIA, PAU staff at hospital greeting us, laughing and saying babies dont' have strokes (yeah, rite!)). She doesn't have the typical austic quirks, like spinning, lining objects up etc...but there are slight quirks she has. Screaming is one of her most annoying quirks, and it's usually her last resort from frustration. She's 7.5 now, doing well in school & they are investigating getting her a laptop - she has limited fine motor skills & holding a pencil and writing still hasn't really developed, but she's smart & is very clever with a keyboard!

Yes, I know of children who have had strokes! So that is really interesting. It would be great if the school gets her a laptop- there are funds out there to apply for that.

We were lucky getting Riley picked up so early because he too was prem so was part of the childhood devt unit but help was sparse for us which I found frustrating.

Riley rarely spins now - occasionally flaps around his eyes and I agree, the needs change. A lot of physical signs have gone and some communication issues but replaced by social issues and different communication issues. Having a switched on 4y old daughter also shows us the difference in conversations that we have.

I think with Aspergers, social/communication issues will become more of an issue as head towards intermediate age. At the moment I feel we can relax a bit as we are in a great school but come choosing school for Y7 onwards will be interesting.

We are working on helping Riley develop appropriate responses- such as differentiating between speaking to a principal or your friend, helping develop empathetic responses to other peoples issues, and having reciprocal conversations.

That's interesting...I wonder why the move towards a more generalised spectrum, and a move away from specific dx like Aspergers. Not that it makes much difference to us (unless it also has some corresponding effect in the kind of services we can access).

Wow that's amazing Riley was diagnosed so early then. Was it a relief to get it over so quickly?

It's really hit and miss for us at the mo. T is so borderline that it's easy to dismiss his quirks as personality issues rather than actual symptoms. But I know how fearful he can get around other kids and all the other stuff that a 45-minute paeds appt will miss.

So how did you guys get started accessing help? We're with GSE and have only just begun the process. Can you self-refer to anyone or do you just have to hope that the primary case worker is going to be on your side, come what may?

We found GSE and the public system too slow. We got a diagnosis in November just before Xmas which was hard.

We wanted to get onto things really quickly as we knew the importance of intensive early intervention. GSE did give us some support but not enough for us and as soon as we showed initiative, it got withdrawn quickly as he was doing well. However, I have some friends saying that things have improved and more support has been turning up.

A lot of people didn't think there was much going on with Riley- that end of the spectrum can present mildly but they didn't know him like us and whatever people say, he still met all of the triad of criteria.

So we joined a charitable trust down here and have been accessing intensive therapy - 5x a week before he went to school. What a difference it made for us! Nowadays, we just do 1x week (with another one fortnightly)

He just comes across as a socially awkward kid really these days. He is very bright and is in a supportive school that helps his intelligence and supports his social growth.

Hi
My twins aged 6 have both been diagnosed with asd (aspergers). Got diagnosed initially by psychologist at age 4 (nearly 5) but I didnt agree 100% & then about 6 mths ago, saw a psychiatrist that specialises in asd & diagnosed right away. My 1st intuitive thought that something was different was at about 6mths, although no early assessments picked up anything along these lines.
You may find in your reading about asd is that kids often have whats called a 'mixed bag' of symptoms. that means there are a whole list of symptoms & each child is unique in that they just have certain traits from the list. My identical twins are a perfect example. Both have aspergers but are totally different in the way they present medically. each boy has their own mix of symptoms. One is defiant, the other compliant, one is very logical, the other is very imaginative.
Both doing well at school for the last few months (generally). prior to this was a huge struggle but I think for us, the social advances from attending school has been enormous.
From a parental point of view, I dont really think of them as having any specific diagnosis, I just try to work with what is in front of me, like any parent would. In some ways aspergers makes them easier to parent & in some ways makes it more challenging. I find other peoples views interesting. Most of my friends treat them like any other kid (because they are) but unfortunatly, the older family members have some issues with it & has definitly changed the quality of interaction, which I find sad.
The boys are incredibly funny, interesting, clever and full on and I love being their mum!

Accessing help really came with a referral from CAFS to Tau Toko for us. They worked with W from dx (around 4ish) until around 5.5 - 6ish and then just re-started recently.

We had huge issues not only with the behavioural quirks but largely due to extreme violence directed to his then very small brother. So we got some intensive help right then, set up a regular routine, learnt how to use visuals to help, manage the behaviours etc.

W would be hard to pick now if you saw him relaxed at home but throw him into a group, noisy setting or with a bunch of kids and you'd be able to tell clearly something wasn't right.

He likes quiet, predictability, routine and little variation - and he has a brother with ADHD!
At least a number of the adaptations we do for W also help N.

I remember when we were really struggling with W and one of his great grandparents commented that they didn't have kids like that in their day. DH pointed out that in their day kids like W would have either been in a home or not survived (because he was prem!).

My il's have distanced themselves from W, particularly when he was younger, largely because he wasn't 'right'. They moved on to N - who is a real handful and so too hard as well. T's had so many issues from birth they haven't really bothered or wanted to get to know him. I just look at it as their loss.

I love the hugely unique and different outlook on life they all have but especially W's because you never quite know where he's going to come from next - I reminded him the other day when they were watching Blue's Clues that when little he had told me that I had notebook hair. He looked up, grinned and said "But you do!"
I've got lots of curls that he thought looked like the spiral on the Notebook...who'd think of that!

Lol Eleanor on the notebook curls..that is adorable.

(You know, speaking of notebooks, I have a lot of your stories already spiral bound from the thread I started on OT ages ago. I need to go back and refer to them or I'm going to make you all repeat yourself).

How do you come by all this info? Are your GPs the suppliers or is it all independent research? I don't know there were charitable trusts set up to help ASD kids. Aries, I know what you're saying about GSE. They seem willing to help, but it's SO sloooow.

Interesting to hear the common thread about family members withdrawing. Sad too, considering we probably expect the most support to come from that group.

(My PIL are being weird about the whole thing, which is rich considering it comes from their side of the family). It always comes as a shock when I put myself out of the mama frame of mind and think as an outsider looking in; people must just shelf Tornado away into the 'special needs' kids category and stop thinking of him as being able to do normal everyday things.

I found out most of my stuff trawling the internet and then once in the charitable trust, scavenging info from the other mums. Our charitable trust is to help us access aba therapy for our children so that we are not financially crippled by something that gets results. There are a few around the country though I am not sure of all their names.

We did a lot of pretend and real with Riley and today at the movies (this used to be a screaming match and we had to desensitise him - fine for last year), he turns and says "Mum, there are a lot of special effects in this movie because guinea pigs don't really talk "

How did you do this Aries? And when did you start?

And aww to the guinea pigs comment Out of the mouths of babes eh?

Info for us came from my own reading and internet research. After that a small yahoo group with Aspie kids and once we had a diagnosis Tau Toko was the most informative, helpful and enabled us to adapt to where we are today.

I got a lot of books from Autism NZ library, managed to make it to a couple of Tony Attwood seminars etc.

Our biggest challenge and what we're working on now through Tau Toko is more advanced emotion recognition, anger management, some self esteem issues, - and I've recently added the issues of spacial awareness particularly personal space and puberty issues which are a whole new ball game! He will randomly pounce on his brothers or just start making silly noises over and over so we're also trying to figure out what's causing that behaviour and how to manage it for household harmony more than anything else!

For me most info initially came from Aries and reading a lot of library books. I did use the internet but not so much. Most recently (as in last 12 mths or so) most has been from attending seminars etc & talking to other parents.

we have recently been able to do movies too, its great. Mostly though they will sit there (especially one of the boys) and pick apart why the movie is incorrect (grass growing in dinosaur times etc) but just NOT get that animation means you can pretend lol.
Just starting to 'get' some jokes. trying to manufacture their own jokes has been a very longstanding trial & much screams & crying, but its just beginning to come together, mostly by intellectual understanding of homonyms etc rather than finding something funny.

If you haven't seen, you may enjoy this.Autistic boy gets chance on team

I have to admit, I find it fascinating how our kids are such literal beings. I mean, T is just beginning to verbalise things properly, but even now it's very obvious that imaginative concepts just don't figure in his world. It's interesting Aries and Karen that both of you have mentioned your children watching movies and pointing out factual errors, because I can SO see that happening in the future with our son.

I kind of understand it, though, because how irritating must it be to struggle to get a handle on the world and then, just when you've found a foothold, to have to watch movies and tv and stuff that just destroys that?

Yeah, life is hard for these literal kids. We just have to teach them about pretend and real and I think once they have it logically, they can deal with 'pretend'. But Riley is quite naive too and I suspect will believe in the magical childrens' beliefs for a few years which is good because it will protect Jemma as once he knows, it will be all over Rover as he doesn't like to be wrong when we are dealing with facts. That is why I think he didn't cope with pretending Jemma was 4 before she actually was as he KNEW she wasn't really 4 and he couldn't work out why Jemma could be so adamant she was 4 when it was still 4 days away!!! Hard to reason with an Aspie at times

LOL! we have problems with birthday parties too regarding dates. MUCH angst about having a party on a different day to the actual date, especially before hand.

Some magical childhood beliefs were dispelled here some time ago unfortunatly (just because logic won )
We still have great tooth expectations which I am very proud to have been a part of!