Update from previous thread

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Previously posted:.....
""My partner has a daughter aged nearly 11, she’s always been considered a slightly odd or quirky child, but as she gets older her behaviour is causing concern and we’re looking to see if we can find an explanation. I’ve done a lot of research online and by talking to people who have more experience than I do, and one possible explanation is Aspergers syndrome. A lot of her traits seem to be typically aspie, but equally, quite a few are not. Her mother expressed concerns to the doctor and she was referred for assessment to a family centre. They spent a couple of hours with her and her mum, talking to mum alone, then both of them together. The end result was a report that seemed to have missed the main concerns completely. The overall conclusion was that it was just naughtiness and bad parenting!!
Obviously it’s a disappointing conclusion and offers us no real way forward. I’d agree that she is more than capable of being naughty but you show me a 10 year old that isn’t!!
I’m certain that a lot of her behaviour ISN’T just naughtiness, and I don’t believe that discipline and punishment are any use with a child who genuinely doesn’t understand what she’s done wrong.

I’ll try to give an overview of her behaviour, and I’d be grateful for any input anyone can give.

Firstly, when she was very young she was diagnosed with a speech and understanding disorder. Severe enough that the immediate family had to teach her basic sign language to be able to communicate with her at all. She was referred to therapy and eventually caught up to what is considered normal for her age by the time she was 7.
Her eating habits were another very early concern. She is VERY limited in the foods that she ‘likes’, she’ll say she doesn’t like most things without even trying them. We’ve come to the conclusion that what she really doesn’t like is introducing anything new. If she was left to her own devices she’d eat the same food day after day. Recently she’s been persuaded to introduce new foods into her diet, but it’s very limited progress and only under sufferance that she does it. And every food item has to be completely separate and not touching anything else on the plate, sometimes even on separate plates.

Academically she’s pretty much within the normal range for her age. She’s very good at maths and science. Not so good at reading but still within the range of normal ability. She doesn’t like reading and can be quite inventive about ways to avoid doing it.
She seems to like order and routine, and is very particular about detail but I wouldn’t say she develops obsessive interests to the exclusion of all else.
She has a need to know what’s going to happen in advance and doesn’t like plans being changed. She used to throw huge tantrums about things being changed, she’s a little more flexible now but still doesn’t like it.
She can get upset and distressed over something that would seem trivial to most people. One huge crying tantrum a couple of years ago was over her mum packing her case wrong when they were going away for a few days. The case had the right stuff in it, but it was in the ‘wrong’ order. She needs to know EXACTLY what time you’ll be leaving if you’re planning on going out, and if you leave 2 minutes later than the stated time you’ll be told about it. If she asks how long til her favourite program is on TV then you’d better tell her it’s exactly 12 minutes and NOT ‘about 10 minutes’. Every detail will be corrected if you get it wrong.

She often comes across as rude or offensive when she doesn’t mean to be. A couple of years ago she gave a birthday present back to someone with the immortal phrase ‘I don’t want this, you can have it back’.
She’d think nothing of giving diet advice to someone who was overweight......... ‘You’re fat, it isn’t good for you and you need to lose weight’. She wouldn’t see it as rude or offensive, just plain simple fact. In fact she’d probably see it as being ‘helpful’. Also under the heading of ‘helpful’ is her constant bossiness. Whatever you might be doing she knows a way of doing it better, and if you have an opinion that’s different from hers she’s quite prepared to explain why you’re wrong.
She has absolutely no concept of why this might not be a good idea, and no matter how many times it’s explained to her she doesn’t get it. She does understand that it’s wrong to be nasty to people and deliberately upset them, but she doesn’t make the connection between that fact and her behaviour.
The most recent example of this involves her mums 2 older siblings who happen to be adopted. The adoption was never a secret, but it’s something that doesn’t come up in conversation very often so she has only just become aware of it. She’s now decided that her auntie ISN’T her auntie. She’s adopted therefore she isn’t really our family, she’s someone else’s family. It’s nothing personal as she loves her auntie, but she very much sees things in black and white and she won’t be persuaded otherwise. And again she seems to have no idea why it might be upsetting for people that she says things like that.

She has a tendency to ‘ramble on’ about whatever might be interesting her on that particular day. She’ll tell you all about her stick insects whether you’re interested or not, and she wouldn’t notice if you were staring into space and completely ignoring her. She’ll keep going until she’s finished or until she’s actually TOLD to shut up.

She has an older brother and sister who no longer live at home, and since they live a fair distance away she doesn’t see them that often. She loves her siblings, gets very excited when they’re due to visit and enjoys spending time with them. But she doesn’t get upset when they leave, or seem to miss them when they’re not around. In fact she can’t wait to shove them on the coach or plane when it’s time to go and she doesn’t want to waste time standing around waving etc. It’s almost like as soon as they are out of sight it becomes irrelevant. She often can’t be bothered to talk to them on the phone, even if she’s not doing anything else at the time and they don’t get mentioned sometimes until the next time a visit is due.

There’s loads more I could say but I think I’ve rambled on enough. Our main concern is that as she gets older she’s finding it harder to make friends. Kids of her own age are not as tolerant as younger kids and it’s only a matter of time before someone thumps her for what they perceive as her ‘rudeness’.
We try very hard to explain why her behaviour is unacceptable without blaming her or punishing her for it, but sometimes it feels like banging your head against the proverbial brick wall. I really don’t believe all this is down to simple naughtiness or bad parenting but we don’t know what to do next. ""


After several phone calls we finally managed to get Jazz a referral to a neuro - developmental specialist. She had her appointment last Thursday and is now officially diagnosed as ASD. Apparently she ticks about 90% of the boxes for asperger, but also quite a few outside the asperger criteria hence the ASD diagnosis. The label itself doesn't matter to us, but at least someone has recognised that it's not just bad parenting. Jazz was quite happy to go see another doctor but wasn't really interested in why she had to go or what it was all about. The only bit she showed any interest in was when the doctor told her she was a bit special because most ASD are boys. She seemed quite chuffed with that idea but she's not remotely interested in her diagnosis or what it means. I think at this stage it simply isn't relevant to her. As she gets older and maybe encounters a few more problems with school or making friends it might become relevant.
The doctor gave us a booklet with general info on ASD and information on local support groups, which we will obviously be looking into.
Thanks to everyone who offered advice and support on my previous thread, I guess I'll be a regular round here from now on.

woohoo! glad she got the dx

Congrats! I can only imagine how thrilled you are to at least have an explaination.

With the DX, you can now insist that the school handle her "quirks" and rough socialization more appropreately.

I am curious as to what "fell outside the DX" and lended to the ASD dx... And what Aspie things she "Does not Have".

We have a pretty good debate around here about the valididy of the whole "language delay" being the bridge between AS and HFA... I imagine that must have been a big part of what put her outside...

It sounds like she is doing great now, and all I can say is wow, to be told it was bad parenting? Bad parenting does not cause a language delay and some of the other things you mentioned, and bad parents certainly don't learn Sign Language and get a Language Delayed child up to "normal ranges" in a few years!

I am a little confused with the ASD Dx though, usually if it is not AS or Autism, they choose PDD-NOS. Generally ASD is used for really young kids who they know are on the spectrum, but with their age it is impossible to pin point where...

One thing I've learned, All Aspies are individuals, all Autistics are individuals, all NTs are individuals. Just because someone doesn't meet all the criteria AS doesn't mean they don;t have AS. There are times when Z seems like a perfectly nt 10 year old, of course he ultimately wakes up and the illusion is shattered .

Go with the Dx, get a good IEP, and push when needed. Ask EarthCalling about that, or ster or Goku or [i]ad infitum.....

The language delay was the major distinction between AS and ASD. Also, she's far more sociable than most aspies and doesn't have much of a problem with eye contact. there were a lot of minor points discussed but the major one was the language delay.

It sounds like what most people call PDD -NOS. I would see if at the next appointment they can give her that label. What that means simply is "pervasive developmental delay- non specified". ASD is also called a Pervasive developmental delay, they are one and the same. Saying she has an ASD means she is somewhere on the ASD spectrum. Saying PDD -NOS means on the ASD spectrum, but not classic autistic or Asperger...

You say she is social, how is she in new situations or with new kids? If you dropped her off at a girl guide meeting tommorow with kids she did know, would she fair about as well as you would expect an NT child?

I know with my son, when we moved away from the group of kids he grew up with all his life, he had a VERY hard time fitting in again. As a scouting leader, my husband and I heard similar complaints raised by the parents of our "quirky" children...

Funny you should mention moving, Jazz and her mum moved to a new area about 9 months ago and since the move she's had problems fitting in at her new school. We were aware of her 'quirks' before the move, but knowing how long it can take to get a proper diagnosis the decision was made to wait til after the move then pursue it. Before moving she was around people she'd known all her life and there were no significant problems socialising at school or with other kids generally.
If anything, the problem is that she tries TOO hard to socialise. She'll bowl straight in with a group of strangers and act like she's known them all her life. In a lot of cases she gets away with it but some find her a little too direct. She can also be very pedantic and bossy, which we suspect might be at least part of her problem at school. She will be changing schools again is September when she starts secondary school, and so far she's loking forward to it because it's a single sex school which is what she said she wanted. Fortunately it's also by far the best school in the area. So far her problems have been relatively minor and it would be nice if it could stay that way but I fear that may be a little optimistic. As she gets into her teens she'll probably have more problems socially and one big fear is that she'll run into problems at school because she has ZERO self motivation. trying to persuade her to do something she doesn't want to do is like knitting fog! We've tried reasoning, rewards, incentives, threats, punishments..... and none of it works. the only way to get her to do something she doesn't want to do is with constant close supervision. OK for now, but can't see it being practical when she's got several hours of homework a week.