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I think my little girl has aspergers...

(24 Posts)
OhBabyLilyMunster Sat 08-Mar-14 11:54:15

Its incredibly early days. Shes ten, and the most wonderful bright, sweet little girl. Shes also always been quite different. I dont even really know how to put all this down, and i have begun to write this post so many times and deleted for fear of offending, or getting it wrong. I dont know.
Ill start at the start, shes super bright and always has been. Read very early, but slow to mobilise. Ridiculously clever with a vocabularly far beyond her years. That continues to this day. School has been crap for her socially from day one. She doesnt get other peoples emotions and feelings, and now shes at the prepubescent stage, where all the girls are a bit vipery, its awful. Shes not 'cool', she doesnt 'get' it. Shes quite socially excluded with girls, but the boys are soft with her and she spends her time mainly with them. Her teachers have always said 'maybe' when i have raised the possibility of being on the spectrum, but its become a bit undeniable now. Other things that are of concern to me now:

She has developed a habitual cough. Shes not poorly, it happens when she is socially uncomfortable or tired.
She struggles to mainly any eye contact, exspecially in diffucult conversations.
Forgets or loses things daily.
Has also developed a funny habit of bending her legs upward, even in inappropriate situations
Even more immersed in her world of books and reading. Currently obsessed with jacqueline wilsons.
Tearful meltdowns when she feels something is 'unjust'
New habits of mirroring the other girls, almost like she is learning how they behave and acting that out
School are now increasingly concerned as she is dropping fast academically. They have put some support in place, and i have a meeting on tuesday to talk about my concerns with the support lady.
I have always had a great issue with school refusing to 'push' her academically... Its always been intrinsic with the social problems, ie, if she works on her emotional and social problems we will give her harder work. Sadly its just meant that she has fallen further behind as shes bored and lacking in concentration.

The good stuff! She is learning some emotionally literacy from her two little brothers, like the hugging and kissing and i love yous. Her baby brother adores her, and i can see she is learning so much from him. Other good stuff.... She adores drama, singing and dance. Shes in a smashing group and is taking lead roles proud face she is also very crafty/creative and we have started having our craft times, where i have found she is a little happier to open up when she has a distraction in her hands.

Im not quite sure the point of my post in some ways. I think what i am asking is a) how does this seem to you, and b) what should i be raising on tuesday?

Shes in year 5 now so i want to try and have something in place for senior school.

PolterGoose Sat 08-Mar-14 12:05:38

Message withdrawn at poster's request.

Redoubtable Sat 08-Mar-14 12:37:51

Hi ohbaby

- How does this seem to you
First off, you seem to be doubting your own judgement as to whether there may be an issue here. I think you have enough there to be concerned about, and any professional who deals with children on the spectrum would listen to your worries.

*Shes also always been quite different. Read very early, but slow to mobilise.

Unfortunately, children on the ASD spectrum often have co-existing problems with sensory processing and with gross and fine motor skills.

*Vocabulary far beyond her years...expressive language can often be higher than receptive.
My DS language scores are 2 years above his peers; but his expressive are about 3.5 years ahead. His understanding is a bit weaker, which is tricky, as one thinks he 'gets' things that he doesnt.

*School has been crap for her socially. She doesnt get other peoples emotions and feelings....this is Theory of Mind..and usually (I'm told) is matured by 6-7 years. Children on the spectrum 'get it' at a slower rate, if at all, and need to be coached on social imagination.

*She has developed a habitual cough and Has also developed a funny habit of bending her legs upward, even in inappropriate situations...this may be a tic or stim

*Forgets or loses things daily....as above difficulties with movement commonly co-exist, and she may have dyspraxia which causes difficulties with organisational skills/

-what should I be raising on Tuesday
I think you've done well to list all the above; its hard when its all in one place.
bring a list like above. Go to GP and ask for a referral to whoever looks at ASD locally (some places CAMHS, some its a Developmental Paed, some use team assessments)

OhBabyLilyMunster Sat 08-Mar-14 13:16:43

I can't tell you how much your responses mean. She's such a wonderful young lady that I want to do all I can for her.

Can I ask what the process of diagnosis is, and how you explained it to your child?

Redoubtable Sat 08-Mar-14 14:15:53

For me, I became frustrated with local CAMHS waiting list as I had felt DS had issues for many years but had no confirmation (down to GP telling me I was seeing things that weren't there as I work in this field [grr])

I went privately for the assessment and diagnosis; which was confirmed later when he was seen by the ASD team.

DS has a lot of sensory processing problems, so initially I focused on explaining it to him in terms of his difficulties with sounds, heights, merry-go-rounds. His sisters are familiar with his problems as being sensory. They tend to be quite protective of him although we went through long periods of him hitting them in frustration.

Over time the term Aspergers/autism has slipped into common usage, so that there is no issue about hearing it said, and we are open about it in family. I do not let him use it as an excuse for bad behaviour though he has tried it on.
To the outside, however, I am quite reticent as I feel the teenage years may be difficult enough without a 'label' to be misused by twats others.

I have been lucky (so so so lucky) that DS's school have been supportive and understanding. Once I had my private diagnosis, they steamed ahead with differentiation and support as needed.

If you get a diagnosis, support from school is essential IMO, to the point where I would have no hesitation in moving school if needed. DS has gone from zero (literally) friends to now having a 'gang' to go to the cinema with.

Ineedmorepatience Sat 08-Mar-14 14:57:23

Hi Ohbaby I have an 11 year old Dd with a diagnosis of Asd, she does fit the profile for Aspegers though.

She was diagnosed when she was 9 and we explained her dx to her just before she turned 10. She was brilliant when I told her, she was glad to be able to understand why she was different to other girls her age and also why she finds some things really hard.

She is an amazing person with a lovely quirky personality, she is fiesty and stong minded. Her biggest problems are understanding what other people mean when they talk to her and anxiety around other people making and breaking or changing rules.

I would recommend a quick google for "Girls with Aspergers" you will find lots of articles, many by Tony Attwood that will help you.

Also keep a diary of her issues/difficulties/quirks as it can still be quite hard to get girls diagnosed.

Good luck smile

Marne Sat 08-Mar-14 19:45:08

OP, you just described my 10 year old dd smile, my dd was diagnosed at the age of 4 with Aspergers, she's very bright and although she struggles socially she is doing great at school, she has 3 friends, all 3 are boys, she doesn't get the girls, she says 'all they do is put their hair up and take it back down all day' smile, she doesn't care about her looks or how she looks to others. She's very sensitive but is learning to control her emotions in front of others. Dd has made it through school so far with no extra support, we are worried about her going up to high school and we have decided to send her to a very small friendly high school, this means separating her from her friends but we feel it will be best.

I also recommend Tony Attwood smile.

OhBabyLilyMunster Sun 09-Mar-14 08:30:39

Its been such a revelation reading about your lovely quirky little people. It gives me so much hope that i can make life easier for my girl.
Had a long chat with a good friend yesterday who is a school nurse, and she has talked me through the process of assessment locally. It was such a relief to offload a little as its usually my husband who has to hear it all.
Definitely going to make notes for tuesdays meeting at school, and also think very carefully about secondary schools as we need to apply at the end of the year. I feel its crucial we choose the correct environment for her. Is it worth making individual appointments at possible schools to talk through her needs? Shes at quite a small school now, one class for each year through reception to year six. I would like something similar for secondary to avoid her feeling too 'lost'

HoleySocksBatman Sun 09-Mar-14 09:08:55

Message withdrawn at poster's request.

HoleySocksBatman Sun 09-Mar-14 09:10:07

Message withdrawn at poster's request.

OhBabyLilyMunster Sun 09-Mar-14 09:34:51

Im really worried about it tbh holeysocks. Shes been in the same school since she was four and they are very accommodating despite her lack of diagnosis.

Ineedmorepatience Sun 09-Mar-14 09:49:17

It is a worrying time oh my Dd3 has been assigned a secondary school, we had no choice because we are only in the catchment area for one school and she has no statement (yet)!

The school is huge but the SEN team are brilliant so it is possible it might work.

If you want a really small school you might need to go private. Not an option for all but if it is for you then it could be worth exploring.

Start looking at schools now.

Good luck and be kind to yourself smile

Ineedmorepatience Sun 09-Mar-14 09:59:42

I meant to say, in terms of assessment we went to our GP with a list of her quirks.
Anxiety is and always has been an issue for Dd3 so I had a list of things that worried her as well.

He referred her to a Paediatrician who refferred to speech and language for a complex communication assessment of her higher level communication skills and Occupational Therapy so they could check her motor skills. Then she was referred to CAMHS who did their own assessments and a DISCO assessment and then she was diagnosed.

The process should be quicker if the school are in support so chat with them and try to get them on board. Dd3's previous school didnt help at all but as soon as we moved her and the school backed up what we were saying she got the dx!!

Hope all that doesnt sound too daunting, Dd3 does have other issues which made diagnosing her even more tricky so hopefully your Dd will be more straightforward if there is such a thing as a straight forward child with Asd/Aspergers hmm

OhBabyLilyMunster Tue 11-Mar-14 13:43:59

An update smile

School were brilliant. Took my concerns on board, are referring into school senco and school nurse to look a little closer. Next step is to see GP to make sure her general health is okay and then reconvene.
In the meantime she will see the support lady in school both alone and with a small group who have similar issues, with a view to forming a little friendship group of their own. Overall impressed so far smile

DD has also disclosed a bullying issue to me yesterday so that is being taken in hand today by school.

Just a question that cropped up today, if she is felt to have a diagnosis or traits of a diagnosis, does it give her any extra weight towards a place at a school?

autumnsmum Tue 11-Mar-14 14:44:00

In our borough sadly if you have a diagnosis but no statement it doesn't help with school
Places

Ineedmorepatience Tue 11-Mar-14 14:48:02

No it doesnt help in my area either sad

If you find a good school though, they should do lots of transition work.

Glad your meeting went well smile

PolterGoose Tue 11-Mar-14 16:21:24

Message withdrawn at poster's request.

youarewinning Tue 11-Mar-14 19:57:53

Glad meeting went well. I have a DS 9 who is currently going through assessment process for probable HFA/AS. Our schools have a criteria for those who need school for psychological/ medical needs. My friend got her DD a place in a school under this umbrella and she is not statemented.

OhBabyLilyMunster Wed 12-Mar-14 07:32:25

Had a read last night and it seems that if the school is named as the best choice for the child then it carries weight admissions wise. Thats good to know.

My gripe of the day is GP surgeries! If i ring this morning i can have an appointment for NEXT WEEK to have dds bloods done. Grrrrrr.

Spiraling Wed 12-Mar-14 11:12:37

I have just been dx with aspergers ( after ds's dx, we are so similar) in my early 40's, but the items you have mentioned about school resonate. Everyday at school was a struggle, and as I could not cope with people and been dyslexic decided I was incredability stupid (except maths and sports) and actually i am really not, but it is very spikey profile.

I would say I only just survived, due to having a twin sis, a dog and love of sport. Knowing ds is HFA, I can put things in place to help him, work to his stengths, keep him busy with interests, and try and guide him to keeping him more on track. Getting school on board is hard, but they if you can it really makes a difference, start looking now.

I also suggest the aspect kids secret book of social rules, aimed at Tweens to teens.

OhBabyLilyMunster Thu 13-Mar-14 17:17:05

Is it also usual for family members to suggest you are making a mountain from a molehill?!

PolterGoose Thu 13-Mar-14 17:20:13

Message withdrawn at poster's request.

OhBabyLilyMunster Fri 04-Apr-14 12:06:19

I thought i would pop back and update this thread with where we are now.

I have met with the school nurse and she was absolutely wonderful. We are going to proceed with the assessment for my daughter, but it was also really helpful to talk through the strategies we use at home and be sure we are 'doing it right' (as far as anyone ever can!).

School have been great since i pushed a bit harder, its almost like things are falling into place and as a result my daughter is so much brighter in herself. Interestingly their ofsted report published last week noted that one of the things that stopped them gaining an 'outstanding' mark was their lack of provision for the most able students, so hopefully we will see some increased input in that area.

Once again, thanks for help given here, i will come back and update more when things move along one way or another smile

PolterGoose Fri 04-Apr-14 13:18:25

Message withdrawn at poster's request.

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