My Aspergers daughter's self-esteem is in tatters and I don't know how to help.

[RunningUphill]

I have a beautiful, funny and affectionate daughter and have watched her grow progressively anxious and angry as she gets older and conscious of her differences. I have spent years seeking advice and a formal diagnosis. I have cajoled healthcare professionals, psychiatric experts and teachers to get her the support she so badly needs and it has always felt like an uphill battle. She is nearly ten and we are still waiting to see if we can get a statement of educational needs.

At first when we got the ASD diagnosis she was relieved to find out there was a reason for her being the way she is. But now she more often feels hopeless and dejected and too tired to try to change. At school she struggles with maths and reading comprehension and has significant problems interacting with her classmates, so she's often bullied or ends up playing on her own. She can't use money or tell the time, and is suffering great emotional strain from the social isolation of which she is increasingly aware. On the other hand she creates beautiful art ? pages and pages of it ? and writes spine-tingling stories and performs drama with such intensity and commitment that her teachers and classmates even the ones irritated by her look forward to the days when she is participating in assembly or reading the story.

She hates getting out of bed on schooldays and is very embarrassed and wounded whenever she gets something wrong, or gets told off for not trying. She has started to hit herself in the face and say how stupid she is whenever I try to correct her or help her to understand where she has gone wrong. (small example: it takes us an hour to get ready for school every day because i have to remind her five or six times to get dressed, and then at each stage remind her what to put on next, because she will have started reading or drawing again. on the way to school i have to try to encourage her to make conversation and talk to me about her day rather than let her monologue loudly about her invented characters all the way there.) Our conversations are exhausting for both of us. She tells me I don't love her every day and every day I lose my temper while explaining to her that of course I do.

We both feel like we are failing. I love her so much and can't bear to see her wilting. What can I do?

Well firstly what are the school doing about the bullying and isolation?

and secondly, does she know any other children with Asperger's? DS goes to a youth club, it's effectively given him peers - which has made a massive difference to him, he's much happier being able to socialize with other children having similar difficulties in school...I have no idea where you are or whether it works in the same way at all in other areas, but it's run by the community education department of the LEA, they run a few different clubs for different ages and disabilities - it might be a starting point to find out what's available in your area.

What would happen if you let her talk about her invented characters? Is it worse on the way to school because she's anxious about school? Or have you just picked that time of day as an example? Because if it's the first, would it be worth letting her do that then and having the conversation about her day at another time?

School makes DS massively unhappy as well, and it's horrible so I honestly wish I had a magic answer to it, but unfortunately there isn't one that I know of

Hello, thanks for your post.

The school took a long time to get to grips with the bullying but they've now taken steps against the ringleaders and are doing lots of circle time with the class all together to encourage understanding and bonding, which has helped. We've also done a show and tell about having Aspergers, which also helped. The problem is that her classmates are sometimes sympathetic and interested and at other times get bored and frustrated with her obsessions and blunt manner of expression. When that happens she gets hurt all over again.

I do let her talk about her invented characters it's a constant negotiation over how much time she does that and how much time she needs to think about conversations I try to do conversations on the way to school so that she's focussed when she gets there. Every time I drag her into the real world or get her to think about how other people are affected by the way she treats them, she snarls and shouts and gives me cutting looks, or starts to wail very very loudly and as often as not we end up in an argument that leaves us both upset. I feel like a rubbish mum. She tells me she loves me all the time in a way that makes my heart hurt -- she feels like she has to constantly check my feelings for her. I assure her all the time and it's never enough.

Thanks for the tip about Aspergers club. I will look it up with the local council. I've got a booklet about local resources that somehow feels very intimidating (??)

Make use of any resources that are available to you and keep talking to the school.

How far along are you with regards to the Statement?. Have you personally made a Statement application to date?.

I have a Dd who is 8 and still in the assessment process for possible AS. She to stuggles socially at school and we have just moved her to another school due to lack of support.

Dd3 also hated school and found it very hard to get motivated to get ready.

We introduced a visual morning timetable, she helped me to make it. We typed out all the things she needed to do eg. Get dressed, have breakfast, clean teeth, etc. We then cut them up, laminated them and put velcro on the back. We then stapled an envelope on to a largeish piece of felt and stuck all the instructions on along with a nice photo of her. As she is getting ready she takes off each strip and drops it in the envelope. When the board is empty she is ready for school.

I didn't think she would go for it but she loves it and it has stopped me from having to nag her.

Sadly it won't help with the bullying but it maight help her to feel a bit more positive if she is able to get ready independently.

Sorry this is sooo long.

Good luck.

Runninguphill, sounds so familiar from my own years at school as a female on the autism spectrum.
Two quick things - is it worth checking for sensory issues with the getting-dressed challenge? I know that for a good number of us (including me) getting dressed or undressed is hugely painful, but somehow the pain just doesn't register properly and we don't describe it to others. But we'll give up and do other things to help us cope before attempting the next painful/'tight/scratchy thing to put on. Worth a thought.

And re the constant asking - it's just the way our brains work. It doesn't mean you're rejected or your love isn't enough - it's just we have to keep reloading it manually every day (whereas most brains register it as a fact and know it instantly - amazing!!). A symbol of love might help her register it using her strengths - visual and imagination. Words can be much harder for some of us to 'feel' using our emotions.

Yup to pushing for that Statement - she needs a bit extra, I'd say...

oh the checking that you love her definitely isn't a reflection of your parenting - DS has never got the whole, it doesn't matter what, I still love you bit either...especially if I'm not actively acting in a loving way (as he understands it) so if I tell him off for doing something, no matter how much I say it's this behaviour I don't like, he still takes it as me not loving him

Thank you all! especially about the loving stuff. its very reassuring. i'm still figuring a lot of this out and it just hadn't occurred to me that she'd need to download it every day. i did buy her a symbol of love to keep in her pocket so she could reassure herself -- a little wooden carving of two people hugging. she lost it after a week ...
we have sent the forms to lea re statement and waiting for date of hearing. fingers crossed.

as someone who may be undiagnosed AS, I would say use visuals for the getting dressed, and let her monologue in the car, as it's her way of reducing anxiety before the school day, which is going to be hard for her. also by that sort of age I found my mother's attempts to help me with social sklls hurtful at times, possibly she feels judged when you try and help her, so maybe have set times when you talk about social stuff/correcting her.

Thanks all again for more great advice.
My daughter goes to drama school at the weekend and loves art on wednesdays at school, so she has outlets there and a time she looks forward to.
Can anyone recommend any particularly helpful books? Been having a look on amazon and there seem to be hundreds.

Martian in the Playground by Claire Sainsbury. oh and have a look at Donna William's website.

im glad i read his thread it had never occured to me by keep offering to help might hurt DSs feelings he does it well in the end but takes forever to get ready and it didnt occur to me it might be because of the materials ect although , just shows how stupid i am i knew he dislikes clothes/ esp his polo shirts because the collars anoy him and hes always prefered to be practically naked at home ill think more before i nag in future

RunningUphill all cats have asperger syndrome was a favorite for my son i couldnt see how old your ds is but my DS 11 loves captain underpants and when he was younger Handas surprise was a favorite with all the animals atm his favorites are diary of a wimpy kid range of books and david walliams three new books he finds hilarious