Support for mums with Asperger's teen daughter

[Dolores2015]

Hello,
I'm brand new to mumsnet and hope that someone will be able to point me in the right direction.
My teenage daughter has just been diagnosed ASD, after 8 years in the diagnosis system. While it's no surprise to me, I could really do with support from a discussion forum of mums in the same situation. I've previously searched through all ASD websites, including those listed here, but when I click on links, pages can't be found, when I email no-one replies and when I call the number is not answered. The NHS have been unable to offer any guidance as to where I might find support in parenting. I am neurotypical but both my mother and brother and ex-husband have Asperger's. Ironically, I'm the odd one out! It would be great to talk to those who understand how stressful it can be parenting a child with ASD, even one as wonderful and funny as my own.

Here's hoping!!! :)

I'm happy to find this thread. I have a dd with AS she has just turned 16.

I'm a single parent too, her dad died so it really is just the 2 of us.

We're having a really tough time at the moment. Dd has had no friends at all since they all dropped her in year 8.

I'll go back and read the whole thread now!

Thank goodness I've stumbled across this thread my dd has just turned 16 and recently diagnosed with aspergers - she is right in the middle of a 'shutdown' that's so far lasted three days and I'm out of my mind with worry

She also struggles with anxiety and depression, self harm and has taken overdoses before

Feeling so worn out win it all

Hi Cherry Tree,

Are you getting support from the school? How does your dd feel about the diagnosis?

Mine has also suffered all of the above but luckily no overdoses. I'm not surprised you feel worn out! What sort of support do you have for you?
I'll check the site tomorrow and can get back to you then.

You've found support now! :)

Glad I found this thread! I have a DS and DD with ASD and their father is too, so I know what you mean about stress - girls with ASD are so different to boys with it that it feels like I have a pair of aliens living with me some times!

My DD drives me crazy - she's preteen and trying to get her to understand anything is an exercise in patience. She has memory problems too - speech and language are working with her on it, but having to repeat the same thing over and over again (just like when you are dealing with a toddler) is very wearing.

Both schools (DS is 15) have been good with them, but even then it can be like pulling teeth to get help for them.

Hi Teigrprincess,

Thanks for your post.

I am at such a low ebb with DD at the moment - like you, I am surrounded by ASD. It's the simple everyday communication, misunderstood, aggressively answered, the never returning a 'how are you' or 'have a good day', the walking out of a room when I'm talking (always about her and to her benefit), the premature closing down of 'conversation', the endless self-absorption- on top of just being a teenage girl! I feel so alone at times. DD is with her ASD father this weekend. Thank heaven for the benefits of divorce!
School tell me how courteous she is - clearly the effort exhausts her and there's none left for home.
These bad times do happen and they do pass. Just have to keep reminding myself of that!!

It helped sharing that...hope you didn't mind.

oh - my DD had a similar intervention to yours with Speech and Language. In her case, it improved with age. By 12, she could remember simple requests. It was miraculous. I'd forgotten about that!
My ASD brother, on the other hand, always had the memory of an elephant, though this has diminished in middle-age. We have less of, 'Well, in 1976, you said that....'.
:)

Hi. DD home for Christmas while on uni year abroad. Downsides: she spends all her time when not in lectures or travelling to and from sat on her bed in her room on the Internet or phone to me, eating crap food, surrounded by mess. Seeing no one, doing no socialising. She says there isn't any. Upsides: she has spent two weekends with uni friend in Berlin which she loved. Also last night, had conversation with both dd and ds about self discipline, ie doing stuff even if you don't want to - tidying room etc. This made a change because we usually do talk like this after a row born out of my frustration. We talked reasonably constructively about the possibility of getting work after uni. However, she used to talk about having a partner and kids but this went down to artificial insemination to not having kids at all because too difficult. Her friend's bad break up with a boyfriend now informs all her views on relationships and their inevitable failure (despite fact me and dh together neatly 30 years and my parents over 50!) She has little motivation for anything. Hence discussion about self discipline. She did agree when I said I said that in the past she has thrived on having a busy and structured timetable. She is so beautiful and could do pretty much anything if she wanted to but just sees the negative. When I tell her her great points she thinks I'm bound to say this as her mum.

My 16 yo dd is in a very bad place at the moment. She has anxiety and depression and has developed terrible intrusive/psychotic thoughts which are all consuming. They are very bizarre thoughts and they disturb her.

She is improving but the main issue is that she won't do anything. She doesn't watch tv or films. Doesn't read or draw anymore. She goes on her laptop and occasionally her kindle. She has zero interests, which seems unusual.

Boredom is her enemy and she doesn't, won't or can't, see that. It allows the thoughts to take over.

She has gained a lot of weight due to her medications. Also she eats badly and refuses to exercise.

I don't know how I can get her to do stuff? I put the tv on in her room without asking in case something catches her interest.

She won't sit in the living room anymore due to the paranoid thoughts.

Sorry, just needed to vent.

Thornrose, sorry your daughter is going through such a tough time. It's so hard when you have to just watch and can't do anything much to help. I just make stuff up as I go along really. I don't think you can do anything mich, except be there. There's enough going on for young people of that age at the best of times. I think putting on the tv is as good a start as any. Does she like music? Or the radio, even? My daughter sometimes takes comfort from stuff she liked to do in the past but that doesn't always work. I hope you've got some support. I dreamt about my daughter last night and then woke up worrying but I couldn't come up with anything like a solution.

Thanks tobee it is hard. At times I want to shake her, I know that sounds bad. She loves music and has it on constantly.

We have support but they're limited in how they can help. Their ideas are for dd to use distractions and fight the thoughts. Both of those things are really hard for her to do.

Funny you should mention stuff from the past. She has just told me she was looking at kids websites she used to like!

Hi I have been reading this thread with interest as my DD started attending CAMHS during the summer hols with anxiety and self harming. Her psychologist had mentioned getting her assessed for ASD to us as she likes things very structured and always has a schedule, her reactions to things not going as planned are v ott, she takes things v literally and she can come across as standoffish/bossy ie wants things done her way with no social niceties which has a negative affect with her friendships. We moved her from her school this year as she was in an all girls school and was the target of bullying by a v toxic friendship group. Unfortunately she still hates school and finds the pressure of GCSEs v difficult to cope with. She can also be so lovely though, insightful and funny. I am struggling how to best handle her behaviour, my DH is much better at it than me as he is so laid back but I think he lets her away with too much. She is constantly blowing up at the smallest thing I ask her to do. I appreciate any advice you can give, as I don't know if is it best just to let her be and do her own thing? I will also read some of the books & blogs that you have suggested. x

BTW my DD is 15

Hi Tillysmum99,

This does sound familiar!

A book my 15 year old dd and I relate to is, 'I am Aspien Girl' by Tania A. Marshall. This can be used for identifying whether ASD feels like the right fit.

I would advise that you ascertain who is the lead clinician at your local children's centre and ask which tests the clinic uses to assess ASD, as some NHS areas are more sophisticated than others. If they use Dr Judith Gould's DISCO assessment and have been trained by her team, your daughter stands a chance of receiving an accurate diagnosis. If not, I would say they could easily miss it.

Other tests' criteria are heavily swayed toward males, upon whom most research is based.
If you can afford it, it's worth asking if your daughter can be assessed at the Lorna Wing Centre, where Judith Gould is based. Google Dr Gould for her background - very prestigious! You could also ask if your local NHS will pay for the assessment. The clinic is in Bromley. After 8 years in the system, this is where we went and got a diagnosis the same day!

What sort of pastoral support is available for your dd at school? do you have to have a diagnosis to receive support? It is worth sharing your concerns with the SENCO at school and asking what sort of training they have to support ASD GIRLS. The support my dd receives is invaluable. Frankly, she wouldn't be at school without it. DD suffers from anxiety, hyper-sensitivity and trying to get through a day of communicating with neurotypicals exhausts her. She can be wonderful, funny and clever, self-centred, rude and vile.

Things get better when dd's understand themselves and you understand how they are experiencing the world. It made me realise that my dd was amazing for just getting through the day! Also, alot of the vile behaviour was due to misunderstanding.

In my opinion, social skills training is a must and is ongoing for us.

I would suggest; you all read the Aspien Girl book and take notes and discuss it; visit the SENCO at school to ascertain what support they can provide your DD right now; find out how you can get a DISCO assessment as soon as possible and, after that, social skills support.

Also have faith that you are the expert on your dd!!!

My dd is having a love/hate relationship with GCSEs. Generally, her anxieties are caused by her misunderstanding what is required of her. Being able to leave the classroom and go to the support block at times of overwhelming stress makes a huge difference. I've told my dd that if she fails them all, it really doesn't matter; she can retake them any time. My goal is to get her through them sane - her mental health is the most important thing. That's easy to say because dd works very hard. But even if she didn't, mental health is more important just because it can't be put off. GCSEs can.

I hope that this helps, and please let me know how you get on with the book if you do buy it.

Keep going!!!!
:) :) :)

Not had time to read the whole thread OP as I'm on my lunch break. Try googling the 'Girl with the curly hair project' . I've attended a couple of their sessions and they have a very informative website and Facebook presence.
I have a DD aged 14 with AS. Very difficult to live with. Currently having issues over haircuts, hygiene and nutrition (as in their are NO haircuts, NO hygiene, NO nutrition) yet she is the brightest button in the box and endearing in her own geeky way [big grin]

Hi Delores thank you for your suggestions, the ASD referral was dropped by CAHMS but after an appointment today they are going to refer her as they have thankfully received a boost in funding. I have now had 3 psychologists say do you think it could be ASD so time to look into it I think. I will get the book you suggested and gave a good read. I have spoken to the SENCO at school but she can't do anything without a diagnosis, however my DD does have extra time for exams due to other health issues, hopefully it won't be too long a wait although I don't think they use the DISCO test here.

"Have a good read" (cake)

Hi Tillysmum99

Sorry to hear about the SENCO needing a diagnosis before they'll help but good news that your DD will have the extra time.

Please let me know what you and your DD think after reading Aspien Girl.

If you contact the Lorna Wing Centre, they should be able to tell you if any practitioners in your area have been trained to use DISCO

The Lorna Wing Centre for Autism
The National Autistic Society
Elliot House
113 Masons Hill
Bromley
Kent BR2 9HT

Tel: 020 8466 0098 / Fax: 020 8466 0118
Email: [email protected]

Keep going!

:)

Thank you for the advice Delores I will contact them am see if they can recommend any practitioners here.

Thought I'd resurrect this thread.

How is everyone?

Dd coming to end of year abroad at uni. She is desperate to finish with it. Still hasn't met anyone at out there except friends from back home, who she visits once in a very long while.. But that's something. Keep hearing from other people who's children are having a fantastic year abroad. I think they don't understand what's it's like for dd. They think I exaggerate. They look at me puzzled but it's too long winded to explain. And they'd still think I'd exaggerated and wouldn't understand. People look a bit "what's wrong with your child?!" But part of me wants to say "your child is just too boring and conventional "!! But I don't because that would be rude. But they are allowed to make faces which are rude. I'm being over sensitive but, today, I don't care.

Hello all!
I have just found this thread and am slowly working though it. My 12 year DD has just been diagnosed with Aspergers after an absolutely miserable year at senior school. This culminated in talk of suicide, running away etc

We haven't told her yet, I want her to rest and recuperate first and I also wanted to ask for help as to what to say! I want to make it positive for her but when i rehearse it in my head I'm finding it really hard. Any tips? Also any recommendations for something child friendly she can read on her own or with me?

I'm so happy to have found this place. I've also asked to join the Facebook group.

I've read the whole thread now and ordered some books and made notes!

It would be great to hear some more updates.

Tobee - my daughter would love a Guinea pig forum! Can you tell me which one your DD uses?

Hi PigWhisperer. As you see, this thread isn't very fast moving! My dd has finally come home from year abroad, thank god for that! I will ask her the Guinea pig forum name when she wakes up (yes, it is late!)

Hi again! Re above its called laurapiggiepigpigs. It started off as YouTube videos but now seems to include Facebook, Twitter, a shop and something called The Piggy Hub! If you Google laurapiggiepigpigs all the links will come up.

Hi tobee!
Thanks for this. My daughter loves Guinea pigs, and joining a forum would be right up her street!

I am still on the hunt for anything that will help me tell her about her aspergers in a positive way. I have ordered a curly hair book and the big Tony Attwiood which I think has some tips in. If anyone can think of anything else please let me know.

There are loads of super brainy successful people with aspergers. Bill Gates is supposed to and Einstein and many more! My dd recommends Luke Jackson's book "Freaks, Geeks and Asperger Syndrome". Luke was 13 when he wrote it and is on the spectrum.