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 have DD age nearly 20 at uni. She was diagnosed as having "some aspergers markers" by a clinical psych while doing a levels. She has high academic ability and a great sense of humour but low self esteem, young for her age, lacks social confidence (particularly with girls of her age) and small number of (slightly obsessive) topics of interest. She now showers once a day but has to be reminded to clean teeth and brush hair etc. She is outrageously messy and unmotivated. She has two good friends at uni but will be leaving them for year abroad in September. She is highly aware of aspergers but has only told one friend of her diagnosis (with my help) but was greatly relieved when she was accepted by that friend. She says she is worried about telling others as she is "borderline". She says she is happy to have a limited social life, which wouldn't bother me if I was sure she wasn't just settling. The uni are aware of her needs but expect her to come to them for help. Even though students who need extra help don't ask! Consequently, she missed an exam because she didn't know where to go. Funnily enough, she and I both think everyone else seem to lack social understanding because they can't tolerate anyone remotely different. She thinks people find her strange because she's not obviously different, just in little ways. I tell her girls in their teenage years are notoriously limited in their outlook and she'll go on to meet all kinds of people. Sorry this is so long but I don't have any friends in rl with aspergers girls.

Hi Tobee

I feel for you and can sense your worry and your dd's difficuties and doubts. Neither of you is alone in this. Everything that you've said is very familiar to me and to my dd. I'm sure that you know that it is notoriously difficult to diagnose females.
My dd, had her diagnosis a month ago. The change in dd's state of mind is enormous - she was SO happy to have the diagnosis - she said now she doesn't have to feel confused about herself anymore. And you know what, neither do I. At times I felt that I may be going mad or looking for something tp be wrong.
DD's diagnosis was delivered positively and dd know's that she can tell people as she wishes - if she needs to access help or understanding.
We've already had an experience that having a diagnosis helped. dd had an orthodontist appointment. The chap she'd seen before had retired and dd was faced with someone unfamiliar in an unfamiliar room. During the consultation, he changed subject rapidly and dd couldnot follow what was going on, Thsi made her very tense as she imagined that he may unexpectedly start drilling her teeth or some such. I saw her discomfort and told the orthodontist that dd was ASD. HIs whole approach changed; he carefully and logically explained every step of the process of fitting braces and removing them, allowed her to see and experience the instruments he'd be using. Dd became relaxed, I became relaxed :). I could have cried afterward with relief - dd has had alot of medical intervention historically, all of it highly stressful for both of us. Now, this need not always happen.

Getting a diagnosis is something I'd recommend it's had such a positive affect on both of our mental health.
dd was diagnosed using DISCO - Diagnostic Interview for Social and Communication Disorders - amongst other things, at the Lorna Wing Centre by Dr Judith Gould. DISCO is used by some NHS practitioners but it is a postcode lottery. ADOS, commonly used throughout the NHS is a research tool not a diagnostic tool and dd had a very low score, unsurprisingly as it was developed for males!
DD is also bright and funny and would stay in her pyjamas unwashed for days out of choice. She's extremely anxious and has suffered depression.
Let me know if you need any other pointers :) Meanwhile, thank you for posting.

Hi I am also brand new to mn and would like to join this discussion please .My daughter is just 16 and has a very new diagnosis of AS ,this has answered a lot of questions for me and we are both relieved she has got a diagnosis .She has always struggled with secondary school and eventually couldn't go ,we've been really lucky and she has a place at a lovely unit which caters for young people like her.Things seem to be getting on top of her though at the moment and she's now in her third week of non attendence at this unit .I know she's really anxious about GCSEs and the future ,I'm trying so hard to help her but don't know what to do .Her Dad ,who I think probably has undiagnosed ASD is no help whatever and I feel totally alone with it all . Just to add to all this , she has told me she thinks she should be a boy , she won't let me tell her Dad this so we're carrying this as well .Sorry , that was a bit long! Needed to get it off my chest .

Hi puffylovey

Thank you for posting. Sounds like you have a lot on your plate. My dd's dad, is self diagnosed (only after dd showed him a book called 'Aspreger's Inside Looking Out' to try to explain herself to him) and is also no help whatsoever; though I think that's because he is unable to comprehend because of his own traits. I also felt very alone with it until I posted on Mumsnet. Hearing others is helping me feel less isolated.
My dd is unsure of her sexuality - apparently gender uncertainty is not uncommon in AS girls.
My dd is also very anxious regarding GCSE's and the future despite only being in Year 9. It's easier for me at the moment because the exams are further off. Is your dd able to express specifically what her worries are?
My dd has at least one meltdown a month after school regarding the pressure of GCSE's specifically rather than school in general. During the last one, I asked her what she thought would happen if she failed all her exams. She replied that she'd have to resit them. I nodded - exactly, 'so that's okay then, isn't it?' I told her that she desn't have to fit into a timetable of life, that things can be more flexible than that. It seemed to put her mind at rest but I'm under no illusion that that is the end of it.
Perhaps you could try looking at your dd's 'preventers', the worries stopping her attending the unit and ask what would make each one easier to deal with or more bearable. It may be that there's some room for negotiation. You may then be able to talk to the unit and see what they're able to accomodate.
One final thing, when ny dd first saw a doc re AS at about 6 yrs old, the doc said to me; 'Don't be surprised if she doesn't fit in to the boxes along the way, just try to keep her interested and enthusiastic about learning, she'll get there in her own time'. I thought that was good advice.

Go and eat some cake and give yourself a massive pat on the back :)

Hi Dolores 2015
thanks so much for your reply , I feel slightly less alone now ! Had a phone call at work today from the unit to say they will try some home education and send a member of their staff out to my home , just to try to ease DD back in to things . I'm so grateful , they really are supportive , got home and told DD , she went bonkers ! Apparently that would be the worst thing in the world . Does your DD see anyone re her sexuality ? Mine has had a referral to GIDS and we have had 2 appts so far , when we're there she won't engage and sits staring at the floor .The counsellor did say its very common in ASD girls ,we are going to stay in the system even though she doesn't want to take things any further at the moment . To answer your question , DD can't say what is preventing her going in ,she just says she wants to but she can't .She has given up on GCSES and has done no revision at all ,like you , I try to reassure her that exam s are not the be all and end all but nothing I say seems to be the right thing .It's very hard isn't it ?I've never been so worried in my life and its so exhausting trying to put a brave face on at work and then ccoming home and trying to be all upbeat and positive , I'm shattered !

It's so helpful hearing from other people with teen/young adult daughters. Why are these threads so unused? It's not as if at this age aspergers etc just vanishes. And loads of people don't get diagnosed early on.

As my daughter says often asd was originally called extreme maleness and was only thought to effect boys and men. So you would have thought it would be more apparent in girls despite their apparent ability to mask symptoms/ fit in??

I haven't added anything to this post for a few days because there is so much to say, I can't edit myself!!

Yes Tobee I agree it's very hard to edit ! Please keep posting we need to chat to each other ,I know we can't give any practical support but the emotional support on here is very helpful .I've never heard it called extreme maleness before , that's very interesting.

Hello Puffylovey and tobee,

My dd is happy to be a girl but feels attracted to people rather than a particular gender. Nothing's developed yet though. Wouldn't it be great if our dc's could just have one difference for us to deal with!!!
It is exhausting. I'm down to 4 hours work a day just so that I can have an hour 'unchallenged' before dd comes home from school, because I never know what I'm going to get. Some days it's all fine and others not. I do think that there's a cumulative effect on me with the coping alone year after year. I do less and less beyond work and dd, but I've stopped beating myself up about that. I wonder what will happen with my dd when she gets to GCSE taking - spontaneous combustion!!!?

Puffy - your dd has so much going on as well as just being a teenager. I had quite a bit of psychotherapy last year and one thing that helped was being reminded that dd's experience was different to my own, and she will experience life informed by her experiences. This did help because I had been piling on all sorts of assumptions about her experiences based on how I would have reacted rather than observing how dd actually reacted. I try not to worry about the days and years to come and just deal with it on a day-to-day basis. That's the plan - doesn't always work out!!
:):)

Gender issues are quite common in people with ASD, from what I've read, and it's often connected to feeling 'different' to your peers, especially same-gendered peers. Tony Attwood talks about this in his book The Complete Guide to Asperger's Syndrome - this book is, imo, essential reading for anyone on the spectrum/with a child on the spectrum. It was reading about how ASD presents differently in girls that confirmed my suspicions about DD and prompted me to get her assessed, and then prompted me to ask for my own assessment recently too!

My favourite Aspie blogger, Cynthia Kim, talks about gender on her blog Musings of an Aspie here. I am currently reading her book, too - Nerdy, Shy and Socially Inappropriate (such a great title ) and I think it's excellent. It has really resonated with me in a way that Aspergirls totally did not.

I haven't added anything to this post for a few days because there is so much to say, I can't edit myself!!

Tobee just keep talking - you don't need to edit yourself, just get it all out there.

Thanks Crabby. I have an old version of that book so may need to update it. My dd is absolutely proud to be a nerd - "glasses, asthma pump and ASD diagnosis; I have the whole nerd set!" says she .
Victory today - she went to the cinema with her nerd friends (her term not mine!) she wore her earplugs and was fine. Huge progress socially and for her independence...

Dolores yay for the earplugs - I think I might have to try that as I find the volume of the audio output and the fucking annoyingness of the cinema-attendees to be very offputting.

Bless her for her nerdy triad! I think that many people identify themselves as nerds (I know DD's dad who sooooo has AS does) and it's actually quite a cool thing, once you meet fellow nerds.

I agree that nerds are very cool. In fact, there are now wannabe nerds and nerd hanger-ons. .

I think that I need a hammer rather then just earplugs I also think that there should be cinema and theatre etiquette notices, but I am particularly intolerant of noise when I'm trying to concentrate or escape.

My designated laptop time is over - I think that the parent child power balance may be all wrong this morning.
Have a good rest of the weekend!

Hello Folks;

Have any of you tried role playing social skills/emotional intelligence skills with your ASD dc? I find the pain I feel when dd behaves abruptly even callously (though this is not her intention) really difficult. When I'm on form, I can process everything logically, but on days when I'm struggling, it can really cut deep. This may be exacerbated by ours being a two person household.
I've bought dd some books recommended on websites regarding relationships and manners, which she finds useful. I'm not sure what is 'teenage' behaviour and what I need to worry about.
Can anyone help?
Puffylovey - has there been any progress with your dd getting back to the learning unit? How are you coping?
Puffylovey and Tobee - my dd thinks that she's bi. She seems very at ease with this. I know that I will accept who she is, I just worry that she may misread signals and be hurt. I think that this is 'Mum' worry, and it will be okay. Can you advise?

Feeling blue...will eat biscuits.

Dolores sorry to hear you're feeling blue.

I haven't done social stories with DD but a neighbour whose DD has atypical autism has taken her to social stories groups organised by the NAS. She's younger, but they may organise things for teens... you could give them a ring?

With DD, because she 's been home educated since 8, I've been able to more closely observe her social interactions and guide/advise her. She doesn't always want my advice, mind! We do a lot of our talking on car journeys when I'm ferrying her to social stuff - it's somehow less confrontational talking in the car. She's quite easily offended by her freinds and sometimes often doesn't realise how what she says/does is likely to be interpreted. I try to help her see the other person's perspective, with varying degrees of success.

Thank you Crabby.

Yes dd much prefers not facing me when she's talking, particularly about sensitive issues such as behaviour or upsetting people. Dd knows everything already, lol, so it can be difficult to introduce without things getting heated.

I will call NAS. :)

Hello, my DD is nearly 15 and was diagnosed with Aspergers last August. School have done nothing and I'm having a meeting with them next week although I don't hold much hope.

DD hates school and wants to leave, says she has no friends. It's really upsetting. She cried her eyes out last night. She says things were better today but i do worry. I would love there to be some kind of club to join where she could meet peers who are similar and hopefully make some friends.

That's hard Nigella, it's awful seeing them so unhappy. Is she in her GCSE year/two years? I guess if so then it would be best to stick with it and look to make friends elsewhere. Maybe trying a cadet group where the rules and activities are quite structured?

Hi NigellaGuest

It is upsetting - and hard for you. I looked for some peers for my daughter with zero success. In her case, some nerd friends were made at school and life became much better.

My daughter doesn't use social media - does your dd? Dd enjoys Parkour (free-running) classes, which ironically are very unstructured. They've given her alot of confidence without pressure and she finds it easier to talk to people when they're doing something; very much as most men tend to socialise.
Does your dd keep a diary at all?

Hey NigellaGuest,

I've just spoken to dd who'd love to get in touch with your dd as she completely understands school misery and having no friends (until recently). If your dd is up for it too, perhaps we could discuss a way of them getting in touch? My dd does physical letter writing and text messaging. She doesn't have an email address, but I could set one up for her :)

Let me know!

Skype!

DD is now on skype every morning chatting with three of her Interhigh classmates. They're a tight little friendship group now and it's lovely hearing her chatting about what homework they've got, what they've been up to, etc etc.

Skype - good idea :)

Dolores - how lovely! I am bowled over by how nice people on MN can be. I haven't suggested to my DD yet - turning it over in my mind how to broach the subject!

:) Nigellasguest - just let me know :)

My daughter's uni exams finished last week. She has come home and has no plans to go back this term until she picks up her stuff from her share house. This is fair because her two friends have gone home for a bit too. However,at home she mostly stays in her messy pit of a room she wakes up at about 4 in the afternoon and does stuff with us or in her room for the rest of the day. After we've gone to bed she stays up til five a.m. She's supposed to be organising an intensive French course for summer, renewing her passport as she's going to a German university for a year in September, tidying her room, etc. Shes been supposed to be tidying her room for about 8 years now (!). She has no motivation or plans for anything else in life. She's pretty jolly and doesn't seem depressed btw. We have occasional gentle chats about how she imagines life after uni finishes in two years. But she kind of becomes an ostrich about it. I try not to be bothered ( I'm not exactly an organised go getter myself). But I would like her to have some enthusiasms. She does have her interests but they are quite limited and not really connected to future plans.

I find it frustrating (or I used to, try to chill now) that's she's so academically able, lovely person. Intelligent, beautiful, great sense of humour but doesn't rate herself at all. She's flourished most in life when she's had rigid things she has to do, be at school, follow timetable etc. I'm trying to get her to see that a job/career can give her that too. It's a massive irony because when she was at primary school she wanted to after school stuff every night. She loved the school adventure week at pgl. Every day when I picked her up from a summer holiday club she used to ask what are going to do now? She's grown out of her interests from those days. Every time I mention doing something or joining something she comes up with extreme arguments as to why it would be difficult. For example, when I talked gently about future plans she immediately jumped in about how difficult it would be to buy a flat in London and support herself. So I replied what? Who said anything about doing that straight away. She's a great arguer !

I keep reminding her about all the amazing things she's already achieved - choosing to go to university far from home rather than going locally and living with us. She's also done quite a few things far out of her comfort zone and doesn't give herself credit for that. I have to remind her. They've been her choice.

I don't really know what I'm doing. I just try to support her and make it up as I go along(!) My husband finds her very difficult and buries his head in the sand. He finds problems like this best look away. But they are so similar. I say this but he says "but I had interests when young and friends etc." but his interests he shared were about music. You know, all that stuff about chords, middle eights, blah blah blah. The sort of stuff blokes obsess about intricately. But that's seen as normal for males! But he did have career ambition.......

Hi all
Not been on here for a while , had loads going on at home . DD still not been to her learning unit , they are being really understanding and are bending over backwards to get her to re engage but she is refusing all offers.They have cancelled her GCSES and put them aside in the hope that she can do them next year, hopefully this has taken a bit of pressure off her.She doesn't open up to me so it's hard to know how she's feeling , I imagine she must be so lonely and bored , she's in her room all day with very limited interaction with the rest of the family . She has no friends , nothing . Maybe her AS means she see her situation differently , I don't know? I'm applying for a statement and am hopeful that she'll get one so if I can get her out of her room and into a college in September , at least the support will be there. It's just getting her to say yes to things ,I don't know what to do . Sorry for waffling , am feeling a bit down at the moment , thanks for listening x