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!!! :)

Hello Tobee and Puffylovey,

Thank you for posting and I hope that you're feeling better today even if things remain the same.
I have a dsd who is NT and in Paris for a year as part of her uni course. She has really struggled with going to uni, even though it was and still is fulfilling her dream. She's been very down at times, on anti-depressants etc She is brilliant, beautiful and lovely - there seems no obvious reason. I think that she puts way too much pressure on herself, is a perectionist and therein lies the route to misery (I know!!), If dsd was AS I think that she would be in her room alone too.
Dd's preference is to be alone in her room though she does go out to follow her out of school interests - it's an effort for her even though she loves them.
Both - do your DDs communicate with others via gaming/social media etc?? My dd loves her gaming 'friends' as she can experience camaraderie (spelling?).
Is there some sort of forum through which our dd's could communicate with one another? Perhaps that would help?

:) :)

Hi. I needed to get off my chest for my last post and then afterwards I re read the whole thread. I found myself smiling while I read it. Maybe it was because of "a problem shared" etc. or because of the recognition. But maybe it was because I thought I really like the sound of all your children even though they have difficulties.

My daughter went to a school full of high achieving girls. It wasn't unusual when they got 13 A* at GCSE. My husband pushed for the school but it wasn't my sort of place before she went there. Some of the teachers couldn't understand why a bright girl had little interest in working hard. I remember a year head listing her weaknesses and said she had even caught her daydreaming. I thought too late to say but isn't that normal in a 12 year old girl??? But then a really good sen teacher came and was very helpful to her and she loved it there and didn't want to leave. She did well. However, she had tons of support and I got emails constantly from teachers letting me know when she had forgotten homework etc. Now, at uni, she's at over 18 and I hear zilch. I've got my ds right in the middle of GCSE right now. He's the most neurotypical of us but has lots of sen needs. Very intelligent but 1 percentile on processing speed. Needs to type and has 50% extra time. He works quite hard but wants to write, direct and star in comedy films (!) so v.motivated.

My daughter's babysitting her cousins tonight. She's very good with children. I drove her there (two hour journey in London traffic ). The books suggested on this thread had just arrived! She read the Cynthia Kim "I think I might be autistic " on the way - reading out the questions about diagnosis and going "yes" or "tick"!

One good thing. She remembered today how as a five year she screamed her head off at gps when she needed a booster jab and screamed at the dentist who threatened her with needing a general anaesthetic in future. Needless to say we went to another dentist. Now, she doesn't turn a hair at the dentist. She had her bcg jab at 15 and wasn't totally relaxed about it. I reminded her today how much better she can cope with things. Just because you are on autistic spectrum doesn't mean you don't change in small and big ways. Both positive and less so.

Sorry. Another massively long post.

Ps let's look into the forum communication idea. My daughter currently posts regularly on a Harry Potter one and a guinea pig one (!)

Thinking of everyone.

Reading the last few posts reminded me of this passage that I really liked in Tony Attwood's The Complete Guide to Asperger's Syndrome ...

"The reader will be interested to know that I have discovered a means of removing almost all of the characteristics that define Asperger’s syndrome in any child or adult. This simple procedure does not require expensive and prolonged therapy, surgery or medication, and has already been secretly discovered by those who have Asperger’s syndrome. The procedure is actually rather simple. If you are a parent, take your child withAsperger’s syndrome to his or her bedroom. Leave the child alone in the bedroom and close the door behind you as you walk out of the room. The signs of Asperger’s syndrome in your son or daughter have now disappeared. SOLITUDE In solitude, the child does not have a qualitative impairment in social interaction. At least two people are needed for there to be a social interaction, and if the child is alone, there will be no evidence of any social impairment. In solitude, there is no one to talk to, so there are no speech and language peculiarities; and the child can enjoy time engaged in a special interest for as long as he or she desires, without anyone else judging whether the activity is abnormal either in intensity or focus. In Chapter 6 I will explain how solitude is also one of the most effective emotional restoratives for someone with Asperger’s syndrome. Being alone can be a very effective way of calming down and is also enjoyable, especially if engaged in a special interest, one of the greatest pleasures in life for someone with Asperger’s syndrome. Solitude can facilitate learning. The acquisition of knowledge in a classroom requires considerable social and linguistic skills. The difficulties experienced in these areas by children with Asperger’s syndrome can impede the understanding of academic concepts. I have observed that some children with Asperger’s syndrome acquire academic skills such as basic literacy and numeracy before they attend school, often by looking at books, watching television or playing educational games on a computer. They have successfully taught themselves, in solitude. When alone, especially in a bedroom, the hypersensitivity for some sensory experiences is reduced as the environment can be relatively quiet, particularly in comparison to a school playground or classroom. The child with Asperger’s syndrome may also be sensitive to change and be anxious if things are not where they have been or should be. Furniture and objects in the bedroom will be a known configuration, and family members will have learned not to move anything. The child’s bedroom is a refuge that is sacrosanct. When someone is alone, relaxed and enjoying a special interest, the characteristics of Asperger’s syndrome do not cause clinically significant impairment in social, occupational, or other important areas of functioning. For the child with Asperger’s syndrome, being alone has many advantages; problems only occur when someone enters the room, or when he or she has to leave the bedroom and interact with other people."

I think Cynthia Kim's writing is fabulous, btw. I read Shy, Nerdy and Socially Inappropriate recently (just after I was diagnosed) and loved it - it resonated with me so much, far more than Aspergirls. I love her blog too, especially the stuff about executive function and why it's so difficult for Aspies and Auties.

DD (12) has always needed a lot of time on her own. She reads for hours at a time, in her room, door closed, perfectly happy. I was exactly the same growing up and still am, still get massively grumpy if my attention is wrenched away from a book. When DD was at school her attendance record was terrible. So many days she just didn't want to go/would concoct some low level illness to get the day off. I know it was just needing quiet time, because she would then stay in bed and read all day. Once we took her out of school she was fine and loves socialising with her friends, but on her terms. She does Interhigh now, has never missed a day and loves skyping with her school friends.

tobee hopefully your DD is just decompressing from uni and enjoying having the time to herself with no demands. Fingers crossed for you that she's ready soon to re-engage with the outside world.

puffy that does sound like a worry. Will she not say what it is that makes her not want to go? Can your LA offer any online schooling options? Interhigh has a sister branch (Academy 21) which is purely for LA referrals. My neighbour's son was removed from school because he was bullied and the LA provided him with a laptop and online lessons up to GCSE.

Hi Crabby,

Thank you so much for your post. I laughed so much. You are absolutely spot on ofcourse.
DD is very interested in the Cynthia Kim book, which I'll order for her.
Thank you for taking the time to write out the Attwood extract :) :) :)

I copied and pasted it from the kindle app on the ipad, Dolores.

When I first read his book about four years ago, that passage really made me nod and chuckle in recognition, both for DD and for me. I love that book so much I've got it on the kindle and a hard copy out of the library! The paediatrician who diagnosed DD referred to it as 'our bible' for AS, especially in girls.

Crabby - Ofcourse you did: I'd have chiselled it in rock no doubt lol

Hi - your posts struck a chord. Sorry I hadn't been logged in for a while. I've found the posts on SEN MN and National Autistic Society Community helpful. My daughter is 13 and off school since March with anxiety. Numerous CAMHS referrals at primary school and then a diagnosis privately ASD anxiety depression. Self harming has started up again. Am single parent too. Recommend getting an EHCP for support at school/college. Best advice is what you're doing I'm sure - any professionals that have listened to me have said - keep going - keep fighting - it could take years but you can't give up. Take care.

Ha! I had a bit of a break through the other day. My daughter said about something I'd said about her "that's my business and for me to worry about, not you". Hooray I said. We've had this joke for a while that we would live together and have a guinea pig/small animal sanctuary. Which I love the idea of in many ways because I love having her around but feel I have to go against what appeals to me and help her be independent. Sometimes I say "do you think I boss you about to much and tell you what you should be doing?" She said "yes, but you're my mother and it's what you should be doing." And I say "yes, but you're my teenage daughter and should be telling me where to go!" And so we laugh. We know, I suppose, baby steps, be happy with that.

Hi Happyn,

Sorry that I'm so long in replying - I've just seen your message. Thank you! What's an EHCP?
I'l look at the NAS Community. the anxiety depression thing is a heavy weight to bear. I also began suffering badly from anxiety a couple of years ago, so at least I understand that part of it. Dd's major anxiety phase, when she was about 10-12 passed. dd still suffers but is able to function most of the time. The difficulty I have is managing her anxiety when I'm unwell myself. That's when it's most difficult and exhausting. moan moan moan lol!

Tobee,
I taught my dd the basic survival skill of ordering a pizza delivery by telephone. I wrote everything down for her; ' Hello, I'd like to order a delivery please...'. She did it and answered the door and paid the man. Baby steps just as you say. She can now be sent around the corner with a short shopping list. yesterday, she did the washing up without being asked!!!! No kidding!

Take Care Both and Thanks for your posts :)

All,

dd has been asking about getting in touch with your AS dd's - we could do this on Mumsnet if they set up their own profiles and threads. There is the option of private messaging for confidences.

What do you all think?

Hi Dolores I will ask my dd. I'm happy though.

I will ask my DD. Im sorry for taking so long to get back to this thread - life took us over and now its late at night, so will update tomorrow

Hi,
:)
My dd is very keen so that would be great

I'm just marking my place. My 14 year old DS is being assessed for ASD. Waiting for the ADOS assessment. He is struggling with the demands of school. I'll be back once I have read the whole thread.

Hello Sillybillybonker,

Welcome to the thread...

:)

Thanks, Dolores. :) I find the whole situation very stressful. This morning everything was "wrong" for him. Shirt, breakfast cereal, me singing, his brother not getting ready fast enough, and so on. He was really angry with everyone and everything. I had a headache by the time he left the house and my poor middle DS had to listen to him ranting all the way to school. He blamed it all on me letting his brothers go to bed 15 minutes later than usual. As a result he went to bed 15 minutes later and said that the bedtime delay made him really tired. It is all my fault!

I try to fit into his imposed "schedule" but sometimes life doesn't run like clockwork. He doesn't seem to understand this.

I'm just letting off steam really. You can't discuss this type of thing with your mates can you?

Hello,

You're not alone! There are plenty of us who understand just how stressful bringing up a DC with AS can be. I've found A Guide to Your Aspie really useful; firstly it's a funny book, and we could do with a laugh, but it's also helped me see things from my DD's perspective, which I was trying to do, but found hard. It's also reader-friendly, so may be good for your DS's to read to and perhaps together eventually, you'll be able to find ways to soften the stress points.
I'm lucky in that it's usually just myself and DD at home so unless DSD is with us, we only have two people's agendas to accomodate.
In my experience, it is impossible to discuss these things with people who do not have first hand experience as they say things like 'that's kids for you' - so please feel free to message on the thread or to me directly. I may take a while to get back to you, but I will.
I tell my DD that being angry is fine, but being horrible to the people who love you isn't and I explain why once then ask her to tell me what I've just told her. Aspies are generally very self-centred, but it's because they are uncomfortable so much of the time, that they're in mental survival mode - and none of us are particularly wonderful when we are in that place.

Keep going :) :)

Thanks, Dolores.

The weekend was not so bad. He ended up being on his own with me as his siblings were away. That was good for him and he had no-one to annoy him. I feel a bit better today! :)

Glad to hear it!
My DD had PMT on top of it all this weekend. Not joyous - however, she just slipped on the floor whilst holding a meal in one hand and a glass of water in the other - the world was about to end until I pointed out that she had shown great skill in keeping all of the food on the plate. She decided to laugh instead of cry. Hazzar!
Have a good week.
:)

Been busy for a while. Dd has just gone for her year abroad for her language degree. It's reasonably awkward to get to. She is staying in a halls of residence a couple of kilometres from the uni where she will be studying. I felt very tearful this evening. Nobody else she knows has gone to the same city. She will have to start again with the painful task of trying to make friends. Halls of residence can be quite isolating little cell blocks. This year she has to self cater and the kitchens are being refurbished and not ready for use for two weeks which seems a bit rubbish. She finds it very hard to talk to people, especially in a foreign language. I keep reminding her she made some friends at uni in England which she never thought she would. The biggest problem so far has been that she can't connect to the Internet at the moment so feels cut off. She likes to watch comedy on YouTube, use Facebook etc. She was in tears on the phone to me this morning but ended up being a bit more cheerful later in the day. I phoned her uni in England's year abroad tutor who said that they weren't supposed to discuss stuff with parents but took her mobile number and was able to reassure her. She's got some access to the Internet now using her phone (hmmm, not cheap) and I found shed posted a lovely photo of a sunset out of her window. She was at home from early June for summer so it's horrible having to get used to her not being around.

:(

Hi Tobee,
It is hard being at a distance. Dsd was in France last year for her uni year abroad. She is not AS but I still found the distance tricky. The good old fashioned telephone was best! Dsd eventually settled and enjoyed it, loved it, hated it was miserable, was happy and discovered she's a home bird. I guess without experiencing being away from your home country, you'll never know if you like it or don't. I think that it's probably good for confidence either way.
I hope that the internet access gets sorted out very soon.
Take Care
:)

I hope your dd is feeling better this weekend, Dolores.

tobee - Could she find a cafe somewhere for now that has an internet connection? Hopefully, it will all be sorted out soon. It must be hard for you both.

My DS has gone on his monthly trip out with his friend to the shopping centre. I love it when he goes out with his friends :)

SillyB

Yes it's such a relief for me when dd sees her friends. She had about four years in the rough and being bullied and now she has a really tight group with no girl-drama, who accept her just as she is. I feel blessed.
:)