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Support for mums with Asperger's teen daughter

(106 Posts)
Dolores2015 Sat 11-Apr-15 09:44:26

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!!! smile

TheFirstOfHerName Sat 11-Apr-15 09:48:07

The Special Needs sections on here are the most supportive and helpful lot I have found online.

I have a 13 year old with AS.

Eight years to diagnosis is a bit of a marathon. We were very fortunate and it only took 15 months.

CrabbyTheCrabster Sat 11-Apr-15 09:51:00

There's a facebook group called Different for Girls which you may find useful. It's very supportive for women on the spectrum and families of girls with ASD.

The special needs section of mumsnet is place to go on this forum. Special needs children, I think, though others can probably direct you better.

If you're new to mumsnet, I would avoid AIBU like the plague unless you're in the mood for a fight. Chat and the special needs sections are much more friendly, whereas a lot of posters in AIBU seem to delight in being as 'straight talking' (rude) as possible. It's not all like that though (and AIBU is quite fun if you are in the mood for a scrap). wink

CrabbyTheCrabster Sat 11-Apr-15 09:53:12

I have a 12 yr old DD with AS, by the way, and was diagnosed myself in January. Are there particular things you're struggling with at the moment?

CrabbyTheCrabster Sat 11-Apr-15 10:02:34

This is the group Different for Girls. They are quite strict about who can join, so send a message to the admins explaining why you want to join, as well as the 'join group' request. I'll recommend you for membership if you PM (private message) me your name. They'll probably accept you if you message them though. I'd thoroughly recommend it if you're struggling - it's a very supportive place.

Message withdrawn at poster's request.

Dolores2015 Sat 11-Apr-15 10:13:25

Wow! There are people out there! Thank you so much for responding.
I didn't realise there were different forums. I'll look at how to access the special needs board. And thank you for the advice - don't fancy a scrap!

At the moment, I'm overwhelmed with the responsibility of launching my daughter into the world with the best support. I feel drained, even though I do have downtime, and isolated as my friends don't really understand what I'm talking about when I explain how hard it can be mis-communicating with someone you love on an ongoing basis. Conversations that run on about three topics of her interests are wearing after 14 years, especially as it's just the two of us! And I feel dreadful complaining about it because I'd never be without her.

Are you able to direct me to a particular ASD forum on mumsnet?

yours gratefully ... smile

Dolores2015 Sat 11-Apr-15 10:15:41

I'll seriously consider re-joining Facebook to look at Different for Girls too!


Dolores2015 Sat 11-Apr-15 10:17:19

Thanks needascarf - I'll do that now. smile

Message withdrawn at poster's request.

Dolores2015 Sat 11-Apr-15 10:31:25

We're very lucky that high school SENCO has been very supportive without a diagnosis. We'll meet again soon to see what further support and strategies can be put in place now.
You're right that nothing does change at home and because of my experience with my family, I've been able to give my daughter specifically directed support that has helped her a great deal. It's a continuously evolving situation - unfortunately my ASD family are not helpful, there's only so much lack of social imagination a neurotypical can take! ;)

DawnMumsnet (MNHQ) Sat 11-Apr-15 19:48:40

Hi, we're moving this thread over to our SN Teens and Young Adults topic now. (Sorry for the delay, OP!)

Dolores2015 Sun 12-Apr-15 10:58:16

Hello thefirstofhername,

Thank you for your reply. Is your AS a ds or a dd? I'd be interested to know more. My brother has AS; he's now 48, married with a ds and has a great job. smile

TheFirstOfHerName Sun 12-Apr-15 17:12:17

He is a boy but not a very boyish boy, if you see what I mean. DD also has Aspergic traits but is better at social functioning.

Dolores2015 Mon 13-Apr-15 19:26:30

I do see what you mean How old is dd? smile

DifferentForGirlsAdmin Mon 13-Apr-15 19:38:17

Hi there

I've NCed for this (obvs), but as one of the admins for the group linked by Crabby, wanted to say yes, you would be very welcome into our safe place.

Because of our group name, we're targetted regularly by people we are sure aren't parents/autistic women, but would rather like to get to know some, so yes, we have a strict policy. So far it's worked, and we now have almost 450 members worldwide smile

If anyone else reads this and is interested in joining, the names of the people you need to P/M via facebook are in the group description/information section.


TheFirstOfHerName Mon 13-Apr-15 20:22:47

She is ten but (like DS2) is quite "young for her age". Her interests are what you would expect a younger child to have.

NettleTea Mon 13-Apr-15 22:43:45

My daughter was just diagnosed last week. She is 14 and we ended up going private rather than run the gauntlet of NHS, as although she was quite 'tricky' it didnt really all kick off until transition to secondary school. During the fairly intensive assesment days it is dawning on me that I may be the same - so many 'but I do that too' moments!
We had to deregister from school and are currently home educating, because the LEA didnt believe me when I said something was wrong, and she started refusing and self harming to avoid both school, and the tiny unit they sent her too, and I was getting threatened with legal action.
So although I had considered it for a while, its all still pretty new to me. She has cystic fibrosis too, so that adds another level of anxiety to our lives. DS is very 'different' as well - very sensitive and problems socially.

Dolores2015 Wed 15-Apr-15 19:38:10

Hello Crabby, Firstof and Nettle tea,

Sorry to take so long to reply and thank you for yours.
I'm still mulling over joining facebook for DifferentforGirls but thank you for welcoming me in smile

Firstof - are ds and dd twins?

NettleTea - I also had to go private and saw Judith Gould at the Lorna Wing Centre. DD and I agreed to spend her 'university fund' on it. Best decision ever. We still have to go through ANOTHER dianostic procedure with the NHS, who have said that they will not accept an out of area diagnosis. Until they agree, the LEA willnot release support funding. However that school are independently brilliant, so I'm not going to worry too much at this stage.
DD also began to school refuse and has an intermittent history of self-harming. The school have worked with us both to keep DD attending. She has also made a couple of friends who so far accept her just as she is; that has changed her whole life enormously. Fingers very tightly crossed!!
It sounds like an awful lot of pressure for you with CF too. DD has allergies and carries an Epipen. She's really good about checking what she eats but what with the AS picky eating and her choice to be a vegetarian at 3 years old, it's a challenge to feed her!

How do you home school?

I'd put tea and cake here, but I don't know how to !!!

TheFirstOfHerName Wed 15-Apr-15 20:15:52

I have:
15 y old boy (neurotypical but with mental health problems)
13 y old boy (AS)
10 year old twins (neurotypical boy and a dyspraxic girl with AS traits)

CrabbyTheCrabster Thu 16-Apr-15 11:49:56

I took my DD out of school in Y4 and home educated her for a few years. She started at Interhigh in Y7 in September and loves it. If your children are very unhappy at school and are school-refusing, you can push your LEA to fund them attending Interhigh or its sister branch Academy 21, I believe. Unfortunately we don't get any help with the fees because we'd already been home edding successfully for years. It's worth every penny (just over £3k a year) though to see her so happy and thriving. We considered the local secondary (and even applied for a place) but I just don't think she would've coped with it.

CrabbyTheCrabster Thu 16-Apr-15 11:51:32

[ tea ] [ cake ] with no spaces gives you

[tea] cake


CrabbyTheCrabster Thu 16-Apr-15 11:52:41

D'oh! grin

[ brew ] not tea.


Have some wine too (bit early for that though). smile

Dolores2015 Thu 16-Apr-15 16:28:26

Thanks both,

It's interesting to hear about other experiences smile
(cake) (brew)

Dolores2015 Thu 16-Apr-15 16:29:34

I did it wrong!!!

cake brew

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