Advice/opinions please.

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This could end up being a very long post so I’ll apologise in advance. I wouldn’t blame anyone for giving up half way through but I’ll be hugely grateful to anyone who can stick with it and maybe offer some constructive opinions or advice.

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.
Any input gratefully accepted.

What an entertaining and well-written account!

I can definitely see some parallels with my own childhood, in terms of having different values and priorities to most people, and not really understanding subtlety directed towards me or the need to be subtle when dealing with others.

The desire to eat foods separately and have them separate on the plate was another characteristic of mine, and I'm sure this has cropped up in several of the discussions here on WP. It seems to be a very common trait.

People with AS can often be quite contradictory, and indeed some of the defining characteristics used by 'experts' seem to clash with one another. It is rare for one person to exhibit every single trait - more a palette of them, and with varying degrees of intensity.

One thing I'm finding in adult life is that I've become terribly aware of my own weaknesses, probably as a result of all the negative reactions I encountered as a child. This has led to a general fear of - well - pretty much everything, really. It feels like I am fighting a battle against myself sometimes, because I want to be successful and adventurous and maintain friendships and relationships but I'm permanently scared of saying the wrong thing or having a meltdown. Self-awareness makes AS harder to deal with. Try to find ways of celebrating the differences rather than attaching guilt to them. It sounds as though you are very conscious of this risk, which is a good thing.

I'm no doctor, just a parent, but that describes an autistic child to the tee. Now there are people who will argue about Asperger's and Autism and high/low functioning, etc, but significant speech delays with all the other accompanying traits you're explaining are indicative of what people call "high functioning" autism. My son is autistic. Why wouldn't she wouldn't have been diagnosed while showing such a signficant speech delay, anyone's guess.
Family centre=? is that a medical center, family crisis place or what? A neurologist is your best bet at getting a diagnosis. Now that she 's talking, it may be impossible to have diagnosed as autistic. But there is a difference in how she can understand language.
My son speaks and is considered at age range, but he will always need visual aides, cues, written rules or schedules. It will always be a weak spot, not that they can't learn but it is more stressful to keep up.

How rotten that a professional would just chalk it up to bad parenting.

Kimj made some great points. I. too am just a parent, not a medical professional, but from your description there is much more going on than [that looks wrong] just bad parenting. A neurologist may be your best bet at a diagnosis though my son's dx came primarily from his psychiatrist. There is neuro-psych testing, a combination of both fields. The parents need to keep pushing to find out where this child needs help. The lack of being able to read social cues is a huge indicater that this child is somewhere on the Autism spectrum. Aspergers is a form of autism, a fact I had a little trouble letting sink in. Don't let them give up.

[quote="KimJ"]
Family centre=? is that a medical center, family crisis place or what? A neurologist is your best bet at getting a diagnosis. Now that she 's talking, it may be impossible to have diagnosed as autistic. But there is a difference in how she can understand language.


OK, I don't know much about how healthcare works in the US but I do know it's totally different to here in the UK. First point of contact for ANY health issue is the GP (general practicioner). They will then decide who to refer you to. In this case it was the family centre, whose job is to make an initial assessment of the situation. They decide whether the problems are actually with the child, the family, the parenting etc etc etc. Based on their assessment you then get referred to someone else to deal with what THEY see as the problems. I feel the best option would be to see a neurologist or psychologist, but based on their assessment that's not what we're going to get. What we will actually get is some sort of counselling that is more focused on the mother than the child. If you disagree with their assessment the only other way to go is to pay for a private assessment. Since the whole point of the NHS is the ideal of free healthcare for all, most people in this country don't have private health insurance and it can cost a fortune to go along that route.

Did they use any of the formal written diagnostic tests for Autism or Aspergers? There are red flags all over in your description and I would be very surprised if it wasn't picked up using such a tool along with developmental history and parent interview.

There is an online screening tool at this site which you might run her through:
http://www.childbrain.com/pddq6.shtml

I don't know if you'll be able to access this as it's on a site that's under construction and some of the contents still are in draft form. See if you can access this--It's trial screening tool for Autism that was created by parents.

click here

There were no formal diagnostic tests done, it was just a fairly informal session. Her mum was seen alone first and expressed her concerns. My initial posting is a fairly small sample of the issues raised. Then Jazz was seen WITH her mum, to observe her behaviour and ask her a few questions. Then a brief session with mum again to sum it all up. My understanding of it is that if they considered it necessary formal diagnosis would be the next stage, but it seems like they don't consider it necessary. The trouble is that to people who only see her briefly or don't know her very well Jazz can appear quite 'normal'. It's only as you get to know her better and spend more time with her that you realise her behaviour can be pretty bizarre, and not appropriate for her age. Her mum now feels that all her genuine concerns were completely ignored and that SHE has now been branded as a bad parent.

Well, that sucks. I can't believe you can't get a second opinion and it gets treated like this.

Bad behavior, odd behavior, failing to pay attention?

But also shows simptoms of aspergers?


Sorry to brake it to you, but it sounds like your daughter has a cross beetween aspergers and ADHD, or as some would call a co-existing disorder over the other.

But dont panic!! !

Its just a thought, but i sugest you take her somewhere else to try and get an evaluation.


(excuse some of the spelling errors)

Hi, spyder774

if you can't get the diagnosis via GP, what about school?
My son was doing really well academicaly, was participating in class when not daydreaming, but got into some scraps at playtime due to his, well, lack of social skills while in Primary 2.
Both his teacher and headteacher were very understanding and helpful, did referrals for Child Development Initiative and after seeing several specialists (paediatrician, child psychologist, occupational therapist, speech therapist etc. but not GP) he was diagnosed with Aspergers within 6 months.
He's in Primary 5 now, doing weekly social skills class and things are so much better.

Could this work for your partner's daughter? Could you approach her school with your concerns?

i agree with lililuna~ check out what the school can do for you...here in the states, you can ask the school for an evaluation...you might not get one, but you could try.
Jaz sounds exactly like my daughter, who's currently dx-ed ADHD~hyperactive impulsive type...we still believe she is an aspie, but are simply dealing with her symptoms than trying to deal with a dx...many of the symptoms of ADHD & aspergers overlap.( poor social skills, poor fine and gross motor skills)

Her mum did try approaching her teacher a while ago and expressed some of her concerns, but the teacher didn't seem to think there was anything to worry about. They only moved to this area 6 months ago so the school is still pretty new to her and her teacher just sees all her slightly odd behaviour as normal settling in problems. They have noticed that she's having some trouble making friends in the playground but I don't think there's close enough supervision to realise WHY. She ends up playing with younger kids quite a lot because she has trouble making friends her own age. This is all very well but in September she starts secondary school where she won't be able to do that because SHE will be the youngest.
After several phone calls yesterday her mum has managed to get an appointment to see a neuro-developmental specialist so it's looking a little more optimistic. As I said in one of my previous postings, Jazz can do a very good job of appearing quite normal so it's hard to get anyone to take things seriously. If it were possible to do a 24hr video snapshot of her life it would very soon become obvious exactly what we're talking about. Even if she IS aspie I think she's probably at the mild end of the scale and a bit of help NOW could make a huge difference to her quality of life. Going into big school is the stage where a lack of social skills is really make or break, we don't want her to end up friendless isolated and miserable with no idea what she's doing wrong.

Two things that could be helpful. If one of the online screening tools (or others out there) raise red flags it would be good to print those off and take them along.

The other thing is to start keeping a behavioral journal, jotting down instances of atypical behaviors.

It sounds like government red tape is the same wherever you live. Beurocrats [ that is probably spelled wrong] are paid to make a citizen's life miserable. All I can do is encourage you to keep fighting for this child and pray you find an official with brains and a heart. Glad to see some progress is being made though. Sometimes this part of the game can be very lonely and discouraging. Don't let it get you down, enjoy the battle, victory can be sooo sweet.

When you feel depressed come here, at least we can offer moral support.

It does seem like we're getting somewhere at last. It's not about putting a 'label' on her, quite honestly I don't care what the label is, we just want her to get some practical help and the sooner the better. As she gets older her problems are becoming more obvious, but the way I see it if we have to wait another 3 years for a proper diagnosis there could already be a lot of damage done by then.
I've been looking online to try and educate myself as well as look for answers, and this is the most supportive forum I've found by a long way. Thanks to all of you for being there.