Girls and Aspergers

[colnelcustard]

Hi I have posted this in a different thread but am posting again as I am getting a bit desperate.

I have been pointed this chat out from another thread that I have posted on regarding concerns about my four year old daughter.

If I list my concerns can someone please help me. My partner refuses point blank to believe there is something 'not quite right', but I have had a niggling feeling that I have not been able to shake for years now. When I read about ASD it all seems to fall into place. So here goes:

1 Is obsessed at the moment with Littlest Pet Shop. Wants to be called Littlest Pet Shop cat and everything has to be about that subject. Before Christmas it was Kitty (as in Hello Kitty).

1. She gets very upset by surprises, last year as a surprise we took the children to EuroDisney. We didn't tell them until we got to the park. We had also gone the year before and she loved it. She reacted really badly to the surprise, refused to go on anything and cried constantly.

1. She relates better to boys than girls. I am not sure if this because she has an older brother but she just does not want to play 'girl games'. Therefore, I think girls avoid her at school. She does play with some girls but the ones that she plays with are more tomboyish. I know that all she wants to do is play Littlest Pet Shop which obviously other girls don't want to do constantly.

1. She hates the dark and loud noises. She wont' go to the cinema and although we joke about it hates any form of mild peril. So if she is watching a Disney film for example when Aladdin got stuck in the cave she ran out and would not watch.

These are just some examples. I would really aprecciate some feedback.
If she is ASD then what does this mean for her and for us. I don't know much about it - will she be able to lead a 'normal' life. I know that sounds dreadful but my heart is breaking over her behaviour and I seem to be alone in my concerns.
Sorry spelling goint to pot as so early!

www.autismresearchcentre.com/tests/default.asp might be a good place to start looking at the sorts of questions that many diagnostic professionals use when they're assessing a child.

The National Autistic Society has a ton of info on the site about autism and Asperger syndrome

www.nas.org.uk/nas/jsp/polopoly.jsp?d=225

and the Times has just done quite a nice article about Asperger syndrome being missed in most girls www.timesonline.co.uk/tol/life_and_style/health/article7017168.ece

If she is ASC, early help and support makes a big difference to the outcomes.

As for whether we live a normal life, that's a bit tricky to answer! I'm on the autism spectrum, I'm married (to a man who's also ASC), I have a job (with a lot of support) and a son (who's ASC as well) and work as an adviser on autism and Asperger syndrome...but it's certainly been exhaustingly hard work trying to cope without the right support until the last couple of years, and I know that I will never be 'the same as everyone else'. But different can be good.

Every single person on the autism spectrum is a person, an individual, with their own likes and dislikes, personality, needs, wants, abilities and challenges. Each of us is worthy of love and respect and each of us is able to bring something to the world.

Whatever lies ahead, it's do-able somehow. I'd have a word with her nursery/school and perhaps with the local GP and take their advice. So many good people on this site too.

A lot of this actually sounds quite normal for a four year old, but if you feel something is 'not quite right' then that's perhaps more important.

I'll be watching this thread with interest though as I suspect my dd2 has ASD/ADHD issues. She has been removed from two private schools and we've just started home-educating as she just did not fit and her teachers were pushing for medication.

I'm not eager to get a diagnosis though as I quite honestly don't trust any specialists enough round here and I'm not prepared to medicate as she is doing nothing dangerous, destructive, violent etc. I'm in the US and they are very drug-happy here.) I am very interested in how Aspergers presents in girls and from what I've read, it has quite a different presentation than in boys and girls are better at disguising problems so is missed.

Remember with ASD, symptoms can range from barely noticeable to severe - I guess it's a matter of how seriously they are interfering with her life, learning, happiness etc.

In order to get a diagnosis, symptoms have to be interfering significantly with life.

One of the great challenges of ASC is that the majority of girls/women display no 'obvious' signs of it at all, not until you're right at the non-verbal and very noticeably differently behaved end. It's why they originally thought that girls were much more severely affected than boys, but were also more rare.

The testing makes me laugh, to be honest. So many questions about whether we'd like to go to a museum (er, no!) or whether we can identify how levers move ropes up and down (er, no - I'm not a boy - never even tried to do this). The questions are designed for boys/men, so they only identify boys/men.

And generally girls are quieter and less likely to be dangerously violent when stressed anyway. So no-one notices us and no-one assesses us.

Then of course female obsessions often are seen as 'good', not geeky. Keep a really obsesssionally tidy house? Great! Collect 500 different sets of shoes in different colours? Fantastic! Know every type of pony there is, or totally obsessed with a particular pop star? Wonderful - such a memory! And of course some girls just do this anyway - but they have friends and a clue how to keep them. We didn't. Or if we did, it's one friend who we just follow slavishly (generalising).

I saw doctors for 40 years without them noticing I was ASC, even though I was going to them with every symptom on the list. I was told to pull myself together.

So yes, there's very big differences between how we present, how society tests for it, and how society 'expects' girls to behave anyway.

It turns out I was coping with not only a tricky form of asperger syndrome with a highly visual mind, but also with being faceblind and dyspraxic. Hmm.

she is not violent although can lash out at her siblings. making her quite difficult.

but for example we went away for the weekend just me and my partner before christmas and my mum collected her from school. She went absolutely nuts having a tantrum screaming that she hated my mum. mum could not calm her down until about 10am that night. Then she was difficult fo the next day only finally stopping on the Sunday a few hours before we got back.

She can't seem to understand that she can have more than one friend at any one time. And she goes from friend to friend and (although am not sure) does not tend to play in a group the way her brother has.

I have suggested this year that she has her first proper birthday party for when she turns 5 and she says that she just wants to have a party with her brother. I said don't you want to invite your school friends along but she won't have it.

I think my main issue is that my partner does not have the same 'niggles' as I do. He says that I am worrying for the sake of it and that she is fine.

I know she is 'fine' but I can't get rid of this nagging doubt.

Firstly I would contact your doctor or your health visitor if you still have one. I contacted my health visitor when my daughter was 4/5. She came out to see her within the week and then referred her to the Child Assessment Centre. There they spend two half days assessing her. There was no formal diagnosis until she was seven as it's not easy to diagnose in girls.

My husband was very similar to yours catchymonkey he wouldn't believe that there was anything wrong with her. It took a while to convince him.

Have you talked to the school they normally have a good idea about the children. Although if the teacher is inexperienced they may have no idea and just see her as difficult. Also what about friends have they mentioned anything, they may feel she is different but feel it's not their place to say anything. Or your parents.

As for a normal life well what is normal. My daughter is in mainsteam school but has a statement to help her survive school. She has lots of friends but has gone through some years of very bad experiences due to school. She was asked to leave one private school. We aren't sure what the future holds but are very positive.

Good luck and I hope you find some answers.

none of the listed thing leap out to me screaming ASD, but tbh, the best advice we were given is keep a diary, it helps and then you can write down things. If your worried go to GP, but be prepared for a fight. good luck and hth

she does not appear to be difficult at school at all. She does as she is told and sits nicely etc. etc.

She moans to us about going to school, I think this is because she finds it difficult to make friends.

I have a parents evening on Thursday so I will see what the teacher says then.

How is she when she comes home from school.

DD1 (and my DSis) is/was the type to come out, fire her lunchbox in my direction and be generally hideous until tea time. It seems to be the stress of being so good at school makes her come out and be rargh.

I have no dx for DD1, but I am sure in my heart it is AS. So many things "fit", but they are too mild for a dx.

We started out like you, at 4 DD1 sounded similar to your DD. By her 5th birthday party I was noticing the difference w/r her and other 5 yr olds, by her 6th party even DH noticed that she wasn't quite the same as her peers. Now she is coming up 7. She is "different". She doesn't have one particular friend any more. The friends she made when she first started school have moved away, so now she is with the ones who didn't get to know her when they were all more accepting iyswim. Party invites are few and far between, but she is v v innocent and doesn't notice.

She is much happier with boys, they tend to take her as they find her more (helped by her various obsessions being things like ben 10 and spongebob). Psychoboy2 has grown up with her, so he is fabulous as again, she has always just been her so he tends not to see her as different iyswim.

My DD1 and my DSis seem to be "mild". DSis lives a "normal" life. She doesn't have vast numbers of real life friends because she tends to piss people off - for years (until we learnt about AS) we thought she just had "an attitude problem", but now it is clear that she just doesn't "get" that some things you don't do or say. But those she does have, she will defend to the death and love fiercely. She adores my DC, and her and DD1 are so sweet together as she is a little mini DSis

Dd1 has AS, her main traits are:

• Wanting to be first/win, for example, first up the stairs, has to walk in front on the way home from school and has to finish her lunch before everyone else.

• Hates change in routine and things have to be in the correct order.

• Has to play games by the rules, if the rules are broken its the end of the world.

• Has lots of friends but prefers older children.

• Gets upset easily.

• Anxiety, worries about getting hurt, lost or something bad happening.

• Poor eater (very fussy when it comes to hot food/different textures)

• Sensitive to sound (hates hand dryers, hoovers, lawnmowers)

• Poor sleeper, often wakes and finds it hard to get to sleep.

• Loves collecting things (marbles, gogo's, cars, dinosaurs).

• High IQ (knows more than me, a keen reader and great with numbers).

• Always has to have the last word (even if she knows she's wrong).

• Can talk foe england, talks from the moment she wakes until she goes to sleep and will often talk/sing herself to sleep.

I could go on and on but those are her main traits, she is now six and was diagnosed when she was 4.5, at the age of 3 she had far more AS traits but these have now gone. I think most children at this age struggle with making friends, a lot of dd1's friends are still like this or only have one real friend.

she is generally fed up when she comes out and this gets worse as the week goes on.

she gets upset when people don't want to play with her. she says they are being mean to her.

i think this aspect of all it breaks my heart more than anything. i don't want her to be lonely or sad at school.

i have got some children together so we can go out over half term she is very territorial at home. when i told her about it she says she doesn't like any of them she just likes x. she doesn't seem to understand that you can have more than one friend.

i just feel like i am carrying this around on my own. my partner just doesn't have the same 'niggles'. she is a lovely child but sometimes she is such hard work.

she is a middle child and sometimes i wonder if its just 'middle child' syndrome.

if he could see it then i think it would be easier for me to seek some kind of diagnoses. i am going to tell him that i want to bring it up at the parents evening and see what he says to that.

Oh and my husband was the same (didn't want to admit there was a problem), he has accepted it now but it took him a bit longer than me.

Hi catchmonkey,

re your comment:-

"she is generally fed up when she comes out and this gets worse as the week goes on".

That would be indicative to me that she is finding school life thing with its unwritten rules re social behaviour very hard. She is bottling up all her frustrations and takes it out on you.

I would be asking your GP for a referral to a developmental paediatrician. If your gut tells you that something is wrong (and I think your DD does warrant further investigation, I would not be thinking about "middle child syndrome" at all here) then more often than not you are right.

My guess is that school have not really noticed anything truly amiss. However, they are not really trained in how to spot children if they have additional needs in the first place.

Some men do go into denial about their children if there are any special needs issues; he will come round in time.

You are your child's best - and only -advocate.

Oh the being first/needing to "win" drives me crazy. Mix that in with a 3yr old who just likes racing and who sobs hysterically when he doesn't win....

With the exception of sleeping (DD1 has always been very much "it is bedtime, I will now sleep until morning"), she pretty much does all of Marne's list

I can certainly relate to a lot of the items on Marne's list.

I am going to approach it this way:

I am going to speak with Teacher tomorrow night (parents evening) and I am going to ask her to observe as she is coming out of school fed up and says she is struggling to make friends.

I know its silly but I would rather just know one way or the other. I would adore my daughter if she had six heads but I think knowing would make it easier to cope with her and would give me the tools to know what to do.

I don't want to label her but I either want to proved right or wrong for once and for all.

My partner is such a great dad I just don't think he see's things that maybe he doesn't want to see.

Thank you for your help and I will update on Friday once parents evening has been and gone.

For DH it was that he has no experience of little girls, and where DD1 was our first, he just assumed that was how they all are. It was only seeing her with her peers that made it sink in. Even now he will not agree with AS, just "different"

So last night we went to the parents evening and I didn't want to approach the teacher directly. I wanted her to tell me if anything has been noticed.

Firstly, I have to say that I did approach DP on Wednesday night to say about my concerns. He told me that he really could not see anything and just thought she was being a sometimes difficult four year old.

Anyway, so we went to the parents evening and when I was asked firstly whether there was anything I wanted to discuss I did say that I thought that dd was finding school difficult and I was concerned about the way she socially interacts with the children.

The teacher confirmed that she feels that dd has had a knock in confidence lately and apparently she shouted out the answer to a question yesterday without putting her hand up. THe teacher didn't tell her off but said something like 'that's right but next time put your hand up. and she burst into tears over it.

She then said she was really trying to encourage her and give her lots of confidence as she seems to get quite frustrated by her inability to read yet. I would just like to say that she is undre no pressure from our end - I am well aware she is only four!!!

Anyway, I was about to wrap things up and DP said 'Why don't you tell the teacher your real concerns'.

At this point naturally I burst into tears. And told her about my niggles etc. etc. and I asked whether dd shows any signs of Aspergers. The teacher (who I did not realise) has apparently worked with AS children in the past and said that while dd might have some problems socially interacting with others at the moment, she is not displaying any other signs. I did bring up the being obsesional with littlest pet shop and she agreed that this was the case, but 4 year olds can become obsessed with things.

Anyway, she said that while she felt that dd was showing no signs she would ask the SEN teacher who is based at the school to spend some time observing her and speak to her and see what she thinks.

My mind has been calmed down a litle but I would obviously like a second opinion. I should add that I do suffer from depression and my partner thinks that I transfer all my worries onto the children and sometimes becoming increasingly paranoid about them.

While this may be true to some point, I don't think it detracts from the fact that I do have niggles. Anyway, we'll have to wait and see what happens. THank you for all your support.

catchy,

I would video your DD playing at home and show this film to a developmental paediatrician. If you have niggles then I would suggest you now seek answers and address these properly rather than further delay.

I personally think you have a right to be concerned given what you have written re your dd's difficulties with socialisation, surprises, loud noises and being unable to go to the cinema. All that will interfere with her happiness in life particularly as she gets older.

I would also go to your GP and ask for your DD to be referred to a developmental paediatrician.

I see labelling personally as a signpost to getting more help. A "label" will not change who is she nor lessen your love for her in any way.

I don't really think that your DDs teacher was actually all that helpful; indeed she has worked with AS children in the past but it does not give her the right at all to say that she herself cannot see any additional signs. How would she know anyway?. I would reiterate that teachers as a whole are not trained at all to spot any additional special needs. This person is therefore not at all qualified to make such a pronouncement.

thank you, Attila, I am going to wait to see what the SEN teacher observes.

I don't want to push it with my partner. I don't want to sound like a push over myself, but he really doesn't think there is anything wrong. ANd if I put myself in his shoes, and he took one of the kids off to see a Paediatrican I don't think I would be happy.

I am wondering whether I need a 'diagnoses' or whether I just accept her as she is with all her funny ways. And just let it 'runs its course' with my partner and see if he picks up on her behaviour himself.

catchy,

Fair enough re the SEN teacher but do bear in mind that these people are also not fully trained to spot any such difficulties. You may not get all that much information from this person either.

Would you then go to the GP with a view to seeing a developmental paed?. It is bloody hard to get your head around this as well but you need to, the niggles you have will not go away, and both of you are your child's best - and only - advocates.

I would go as far to say that your partner is perhaps in denial of his DDs difficulties with socialisation as many men are want to do in these situations. They cannot fully accept that there could actually be anything amiss. But being in denial does not help his DD.

Many girls on the ASD spectrum are also very compliant in school doing as they are told. Its the social side of it that is extremely difficult for these people to cope with.

Of course you can and will fully accept her with all her "funny ways" but there is more often than not a reason as to why the "funny ways" are there in the first instance. You are also seeing your DD daily at both home and school. You see her leave school upset and fed up, your partner does not see this.

Do not let your underlying and long standing niggles go unheeded or you could kick your own self ultimately for not acting sooner.

Oh, I can only agree that it's best to have a dx than not! DS was dxd at age 9 and I wish I'd been more proactive in pushing for a dx in hindsight. His early signs were just a bit of shyness and quirkiness so not too problematic, but things escalated as he got older. This tends to be the case, as social rules become more complex and schools become bigger as children get older. He's 11 now and will be going to a special school for secondary as he can't cope with a big mainstream school at all. I was told by the behaviour support worker that she didn't think DS has ASD, even after his dx! There will always be some people who will be skeptical and try to minimise your child's problems. But you know your own child best, and all ASD children present differently, so your child may well not be like any other ASD child they've taught before.

I think I have come as close as I am going to get to DP recognising there was a problem. I attempted to bring it up again last night.

In the end he snapped with me and said 'look is there a cure for it'. I said 'no' he said 'then please accept who she is and how she is and get on with our lives'.

I have thought about the information here and I am going to press on with the sen teacher and explain the areas to her that are outside school.

my mum is here today and she does not respond at all well to her, I am definately not seeing things despite all my issues.

catchymonkey, it is very hard isn't it.
I think thatthe argument that as there isno cure it isnt worth diagnosing isnt always valid.
For us getting a diagnosis for our dd was important, and ,although it's erarly days,I suspect will bebeneficial toher,her teachers and our entire family. It is certainly helping me already to view a lot of behaviour differently, in a calmer way, without all the fustration now I understand where it comes from.
It is going to be a huge help at school for her, as she is currently achieving well below her potential. Curretnly she isnt toobothered by not having many friends, butI suspect this will change and at least now we can look at putting strategies in place to help her socially.etc...
You could maybe put forward some ofthe waysa diagnosis may help to your DP.
And is he reaaly believes that there isnt anything wrong, then anassessment could confirm that and put your mind at rest, so nothing lost!