Does anyone have experience of a girl with Asperger's Syndrome?

[stripytroubletrousers]

Hello! I'm looking for experiences of girls with Asperger's as I believe my DD (10) has the condition. She was diagnosed by a paediatrician a year ago (who said she 'ticked every box'), but since then I've been informed that this was not the right way to go about things and she's having to go to the bottom of the long queue awaiting diagnosis from the Autism and Asperger's Team. School are fully supportive and pretty certain that she is Asperger's. I'm a mainstream secondary school teacher, but I've only ever dealt with boys with the condition. From what I've read, I would be very surprised if she is not diagnosed as Aspergers. I'm quite worried at the moment as she's due to make transition to secondary school in September and it's unlikely that any diagnosis would have been made by then. I actively want it in place for her so that other people understand her behaviour and mannerisms.

So, I was curious to find out about other people's experiences of diagnosis, and of the transition to secondary school. Finally, I would like to know if anyone had additional support to help them through this and if they did, what it was, so that I better understand what I should be trying to put into place for my DD.

Thank you all very much .

Hi there, i used to support a young lady from year 7 to year 9 who had aspergers. She had major problems with "friendships" when she first started secondary school and needed a lot of emotional support. This girl was statemented for a full week so there was a lot of support in place, which she needed, not necessarily for her learning but as you say because of her behaviour and mannerisms.

She is now about to leave 6th form and still has one of the friends who is her best mate, she has passed her driving test and is doing extremely well. She used to make me laugh with her incessant chatter, funny little walk and cheeky smile.

Can you push for a statement, I do feel for you because I have a son starting Reception in September who has medical needs and emotional issues that CAMHS are assessing at present and i am dreading him starting school

p.s if its in writing that assessments are taking place with a diagnosis impending, she would be on the school action plus register i presume? so some support would be in place i would hope. Can you arrange a meeting with the SENCO at the secondary and air your concerns for your daughter. Secondary school is such a big scarey place as you know from working in one

hi there, i also have a dd who is currently being assessed. we started this long process back at xmas when the consultant thought dd might either have aspergers or ocd? i originally went to him thinking he would advise for dd to see a counsellor as she was finding school and friendships and everyday living so hard. needless to say this has been a long 6 months and i feel dd is slowly getting worse. everyday now going to school is a meltdown situation where dd screams and cries for the full hour before school. she has no self esteem at all, any changes to her routine throw her completely off balance, learning new things at school are a nightmare, saying that, she is very clever but just has no confidence in herself. i should also say that dd is 10 years old, and from what i have read this is the age that aspergers would become more prominent. currently she shes CAMHS but does not want to!! next friday i am going for a DISCO which hopefully will enlighten us all as to what they finally think. i also would love to hear if anyone had any advice as to what to expect or even what questions to ask next week at the DISCO assessment. i have posted before but would mostly lurk and i think blossomhill maybe would be able to advise us as i think she also has a daughter with aspergers.

thanks for reading
bev

Hi,
I have a daughter who was diagnosed with Aspergers aged 3.5. She is now 4.5 and progressing well as i have a great support network and have attended tons of courses and seminars to learn about her condition. Our way of life has changed completely but these changes have helped her immensely. I cannot recocommend enough parents attending an Earlybird course for parents of pre-school children or Earlybird Plus for parents of 5+ children. It is run by the National Autistic Society and covers what Autism is, how an ASD person interprets the world, understanding behavior and behavior management plus a hell of a lot more - it's a toolbox for life!
The NAS also run a 1 or 2 day course, called HELP! that is free of charge and can assist with where to go for help and what to do.

For anyone who is fighting to get a diagnosis you are in for one hell of a battle. I have done nothing but fight doctors, the system and now her school since I realised she had A.S, for things that people take for granted. Every day is unpredictable and hard but the victories are very sweet. If you believe your DD is A.S then I would treat her as if she has a diagosis and make the changes that may seem silly to us but have made a huge impact on our lives, things like keeping everything in routine, preparing her before any event so nothing is a surprise (count down sleeps, social stories etc), be aware of the environments sensory impact on your DD...

I could write for hours but without knowing the exact details would appear to be waffling so if i can be of any help please feel free to contact me.

Take care and good luck
Steph xx

She was diagnosed by a paediatrician but they say that's not good enough?! Very odd.

Girls with Asperger syndrome? There's some of us on here . Well, us once we're grown up, anyway.

Generalisations follow:

Very different from boys. Boys shout, run, rant, fight. Girls obsess, 'shut down', stim quietly maybe alone out of sight. Girls are more likely to have a friendship because they get 'adopted' by girls who take care of them, and because they have obsessions that are more 'cute'. e.g. horses, dogs, collections of info on favourite film star, etc. We're more willing to make eye contact if we have to do so, too.

It can really confuse diagnostic people who are used to seeing the 'badly behaved boys' and asking boy-related questions of everyone.

Girls tend to hit real problems in adolescence once the others do the hair/makeup/fashion/boyfriends thing. And of course the 'ooo no, periods!' dilemma. Differences that seemed quite minor beforehand get far more noticeable, I think.

Tons of info on here. Ask us anything.

Hi...not a daughter..a son..so can't help you with the first part of your question.
But maybe can give you some help re transition to secondary.
Ds was diagnosed just before his 11 birthday...he's a summer baby and started secondary school last september.
Cahms ran a transtion course for children on the spectrum moving onto secondary school. They were however quite loose about it and a friend whose child has no diagnosis (but on their books for another problem) phoned up and got her child on the course. They were fine about it. It lasted for 6 sessions...but was spaced out so that the last few sessions were after he had already started. They did quite a lot of stuff with them ( taking them to a canteen and showing them how to get lunch,timetables,bullying, etc etc)

I would really recommend phoning up cahms and finding out if there is anything similar available.

The local autism support and development team also produced a transition pack which i worked through with him...taking pictures of the school, his form tutor, the uniform ...(errrm lots actually let me know if you want more details). It was produced by Casadt (cheshire autism support and development team) but you could maybe be cheeky and phone them up for a copy ...i've a feeling they would let you have one.

The secondary school senco also invited ds for 3 extra sessions at the school. He went in and they gave him his timetable and colour coded stuff for him and got him to find his way about the school etc etc. He sat in on lunchtime and a few clubs. She also met up with me and got his first IEP up and running and told me about the support he would be getting...how they would communicate between home and school etc.

Oooh good luck...its a worrying time isn't it? fwiw...ds has been fine...the whole regimented timetable thing seems to make more sense to him than primary school ever did.

The key is to getting good comms up and running with the senco of the new secondary school i think.

Just thought i would say hi, i have 2 dd's one has Aspergers and the other has high functioning autism, they are a lot younger than your dd so i'm not really much help but just wanted you to know there are other parents on here with AS dd's.

One thing i have noticed with dd1 compared to boys with Aspergers, she seems to be able to mask a lot of her traits at school and some of her traits seem to have gone altogether.

Thank you for all of your responses so far. amber I've been told that there must be more than one person involved in the diagnostic process. Seeing the senior paediatrician and him saying yes she is wasn't according to school, good enough. Except it took the over a year to point this out to me. Back to the beginning.

School have been good with her in terms of extra support, like social stories and helping her to organise herself, but it does worry me that she will be a bit lost at secondary school. This year, for the first year ever, she has a friendship which is fantastic, but I'm not sure how this will last through transition. She still spends the majority of her time in an imaginary world though, with "shadow friends" and her imaginary boyfriend. Subsequently, she has been very teased and as amber says the differences are getting increasingly striking. She doesn't like to clean her teeth, we have an uphill struggle to get her to wear a bra as she loves vests and doesn't like the feel of clothes against her skin, and she also forgets to put on deodrant (she's physically developing quite quickly). I'm worried that if I'm not vigilant she's going to get really bullied. It's especially hard at the mo as I have a 4.5 month old DS, and I still have to check everything with DD on a morning otherwise she won't look after herself. Even though she prefers her own company, she's aware of social norms and feels she likes to have friends, and gets - like anyone would - really upset when she's been teased. This has happened all of her school life, she's been really miserable at times and it's been awful to watch. Until a 18months ago she was really looked at as odd, though when we moved to this area 3 years ago, the teachers put her straight on the SN register - I'm guessing for social reasons. I'm still waiting for the speech therapist to see her through as, for numerous reasons, they haven't yet. The whole thing feels like a bit of a let down really and I've got the next couple of months to really try to push for what I think she needs. So rather than relying on school to tell me, I hoped other people might share their experiences so that I can go armed with knowledge and know what to ask for.

One thing that is happening is a meeting with the STARS team, in spite of the fact that school don't think she needs it (I think like troutpout mentioned). I'm going along to that. They help Asperger's children through transition. I'm rolling up my sleeves... I've wangled it without formal diagnosis because the lady on the diagnostic team said it would be really unfair for DD to miss out because of everyone's failings, and she will support referral.

Cahms team were supposed to get in touch with me after first diagnosis and never did . I finally chased it after waiting 6 months, then found out it had all been done wrong!

Very, very cross baby so I'd better go, but thank you all again and any other help appreciated .

Ah yes, all this sounds very familiar:

doesn't like to clean her teeth (it hurts, and the toothpaste tastes like industrial chemicals). Very soft brush, different sort of toothpaste?

Won't wear a bra? No wonder - they hurt, and because our brains can't switch physical sensation off, we feel the pain of the tightness all day. I wonder if a very soft sports-type bra would be an easier thing, in a slightly wider size than her actual chest measurement so there's little feeling of constriction?

Forgets deodorant? Might be worth a picture sequence on the bathroom/bedroom wall of things she has to check, in order. Sometimes pictures are a better signal for us than mum reminding us.

As for help with the new school, what really helps is as much info as humanly possible. Visits, photos, plans, layouts, lesson contents, teacher's photos. Also a safe quiet retreat space to go to in breaks and lunch hours. If the school won't provide one, she'll need to invent her own somehow.

The school should have a good SEN policy and it's worth making early contact with the SENCO of any new school to discuss what can be done with a part-diagnosis. They might be able to help quite a bit?

amber thank you so much for your really enlightening post. I knew she had issues with physical sensation, but not that she couldn't switch it off. I will definitely take up your suggestions. (We're actually at the stage now with her teeth that if we can't sort them, they are going to start rotting out of her mouth.) LSA who works with her is talking about going around the new school with her and taking photos.

She's actually coming to my school, but I want her to be as independent as possible. The reason for this (as I know some people will find it strange that she will be at the same school as me) is that it is excellent academically and has a great SEN department. When I knew I'd got a job there, I purposefully moved to the area as I thought it was a bit silly to move to a new area, to teach in the best school there, and then to send DD somewhere else. I don't intend to do anything differently to any other parent of another Year 6 child with special needs who is making transition to my school (I don't want special treatment as I don't think it's fair and intend to go through the correct channels), but at least I have some peace of mind that our SENCO is great. It was actually him who originally suggested DD might be on the autistic spectrum after I went to him for advice after her new school questioned her social skills and wanted to refer her to a speech therapist. It also means I can transport her to school with me, as she wouldn't manage the journey there herself, even though it is a short one. Thanks again for your help.