Anyone else got a teenage daughter with high functioning autism? Post Reply

[jomi273]

Hi Do look at The Girl with the Curly Hair Project. I think it would be great for you and for your daughter. Alis has written some fantastic books which explain ASD, Aspergers, Meltdowns, Shutdowns etc in a very clear, simple, understandable way for children and their parents, carers, schools etc I really recommend you order one from Amazon to give you a taster. And they run great workshops too for both children/young adults and parents. I have a son on the spectrum and I bought some of the books (just as relevant for boys) and we are attending the London courses soon. I met them at the Tooting Autism Fair recently - on the stand were 2 Mums, one who had been diagnosed with Aspergers in her 40s, both of whom had daughters (about 13) who had been diagnosed recently. You are definitely not alone. It is an uphill struggle but you will get there. There are Mums just like you out there, you just have to meet a few. Well done for writing this! ps someone else mentioned Robyn Steward, there's a great video of one of her presentations on her website.

I have actually found these books and yes they are great but my daughter is still almost in denial and although she is very glad she's got a diagnosis (she had worked out something was different and had been trying to tell me for a couple of years) but she doesn't want to read anything or go to anything. I have just bought tickets for the Weds talk in New Malden and I have actually managed to get someone from my daughter's school to come (no mean feat I am constantly expecting them to turn around and say they can't meet her needs even though they have stepped up to the plate a bit since I pointed out gently where they were breaching the disability act...)
I am hoping that Weds will be a positive and not the opposite... I am sure all in my position will recognise this scenario!
Robyn Stewart sounds great, I will Pm you and BMM the lady above who also mentioned her with my details to pass on, thank you very much
Jo

[ally30_1998]

Hi,
I have a 22 year old son with Autism, but I very much empathise with you regarding the coping skills and the denial.
It's lovely to see so many people reaching out to you here. Thank goodness for the Internet. It does make such a huge difference to this of us who are raising or have raised our autistic people when single parents.
The best advice I can give you is to develop a peer network. Not having family around isn't a disadvantage when it comes to autism as sadly they are all to often lacking in understanding (my own are OK and proud of my son, but even they have plenty of 'he just needs to do/learn this", "why don't you this?" Type comments when he was younger, which is tough to bear when you are fighting through each day on the frontline.
I have a partner now and am very happy, but for 10 years I was on my own with son, and my best support was an Internet group (the first one in the UK) and its social offshoot. Once a year we'd all manage to co ordinate childcare, respite care, savings etc, and congregate somewhere for a few days. We have seen each other through all the highs, lows and tragedies and our now in our 20th year.
I also had great support from the local autism group although I dont think there is a full group for Wandsworth yet. There is a mum who is working hard to develop a branch.
The Autism Fayre sounds great, I wanted to go but couldn't. It's organised by a lady called Venessa Bobb who runs a charity called A2ndVoice based in tooting. She is a super lady and very helpful to people in your situation and will completely understand. I suggest you contact her via her Facebook page or website (just do a google search). She does focus on BAME and she now also chairs the Lambeth Autism Group and is very inclusive.
Good luck. It's almost impossible to really understand high functioning autism unless you are or live with someone with it.

[julesie]

Hi Jo I will look out for you tomorrow evening and come and say hello. Well done for getting someone from school to attend too, that's a coo. That was fast work, well done, no flies on you ; - P Perhaps this is the first step for them, but it can only be a positive one. I have watched some you tube videos lately about aspergers. I watched a couple of really excellent pieces put up by Autistic teenagers - one by an Aspergic girl. I will try and find the link and send it to you. At the right moment, I think this might be something to consider showing your daughter. They are very positive wonderful little movies - children who talk about coming to terms with their difference, learning to accept themselves and embracing their uniqueness. Definitely something I will share with my son a few years down the line. It might give them another slant, make them feel less alone, show them how much they can love themselves just the way they are. And these autistic kids are really cool! Also I am sure your daughter would really benefit from meeting other girls like her with autism. All your daughters friends at school like your daughter for what she gives them - she is having to work very very hard to present a package that she feels will be accepted. How can your self-esteem grow under these conditions? Until she feels accepted and genuinely appreciated for her TRUE self, autism and all, I would reckon it would be very difficult for her to accept and appreciate herself and be okay in her own skin. I think a relationship with another girl like her would be hugely beneficial... Perhaps the network you are currently developing will throw up some opportunities for her to make connections with others in a similar situation. Perhaps TGirlWTCurlyHair project will be able to make some suggestions, I spoke to a lady on the stand whose daughter was a similar age to yours... See you tomorrow!

[kinka]

Hello,

Contact with National Autistic Society in London.

wish you all the best!

[popmama]

There is also the Autism Show at ExCel, London on 17-18th June (Friday/Saturday). Usually the Friday there are professionals and the Saturday more parents/families. It is run in association with NAS and I have heard has lots of information.

http://london.autismshow.co.uk

[Mumbojumbo]

I seem to be coping a bit better now, live off Battersea Rise and would love to meet and be a shoulder or support x

[jomi273]

Dear all you lovely wonderful, warm people.
Thank you - from the bottom of my heart thank you. I feel like I have been thrown a lifeline. I met one of you, Julesie at the Curly Hair Girl talk last night, (which was fab by the way and before I saw Julesie's email saying she was going) so that was also really good. Someone from my daughter's school did attend too so amid my fear it could fuel them saying they 'cannot meet her needs' (when they really can and do but the principal is not ASD friendly at all) I am hopeful that actually they will have realised that they are doing just fine and just need to create a bit more of a culture of understanding to make it easier for all. I guess this is the same for most mainstream schools, private or state.
I am going to arrange to meet all of you that offered, so please bear with me while I arrange this.
I am inspired by your stories and feel much less alone in this - I really do feel uplifted and very grateful to you all for reaching out to me,
Jo

[julesie]

What a lovely note Jo. I am touched, and wish that I had been brave enough to stick up my hand and ask for help and support a couple of years ago when we were going through very hard times and all on our own. Good on you! Was lovely to meet you last night, bringing your rep from school was definitely a very positive move (I clocked her early and had a chat with her in the tea queue), I think Dee's talk greatly expanded her understanding, as it did all of ours. See you on 15th for the next one! : - ))

[Minx-Maths-n-SEN]

Hi jomi,

I've sent you a pm.

T

[Minx-Maths-n-SEN]

I'm not entirely sure if this is an appropriate place for this response, so please forgive me if it's not.

I have been working in ASD for over eight years but only self-identified as Asperger's over Easter. I'm 40-something and worked in an SpLD school for four years and no one spotted it. I'm currently waiting for a formal diagnostic appointment.

I may possibly be in a unique position to help you struggling mums to understand your Aspie daughters, because we females present completely differently to the boys, and it takes a huge toll out of us.

I managed to keep mine underwraps a very long time at huge cost to myself. I was misdiagnosed but miraculously underwent the right treatment for the wrong diagnosis. I know how hard life can be and I know strategies that can improve it enormously. These are the sorts of strategies I teach my students if they need them.

I'm not suggesting all of you should suddenly hire me for your daughters, but it may be useful to meet up. I'd be happy to share some of the things I understand that you're unlikely to if you're neurotypical.

Apologies if this is the wrong place or inappropriate in some way. I'm Aspie and still struggle with judging these things.

Strength to you all.

T

[julesie]

You would be a massive credit to any school or group especially, as you say, the girls because you know how good girls are at covering up and putting a package out there that's not a true reflection of their whole selves in order to fit in. It's an act - for survival. Pretending to be like all the others takes, as you also say, a MASSIVE toll on health and self-esteem, confidence and growth. You would be great at spotting it in girls I reckon, helping them to find ways to accept themselves, and suggesting strategies to cope with living alongside all these neurotypicals. Teenagers have enough on their plates hormonally and socially without the added weight of trying to fit into a community that largely operates on a different plane to them, which is often quite incomprehensible. My son's mainstream school is a very understanding and supportive school but I still think that staff in general comprehend very little about what is actually going on internally for these autistic children. Anyone who could educate and enlighten them with talks would be so welcomed by parents! I think you could play a vital role for these families and schools - in order to help the children!!! And then of course support for the kids themselves. Well done for surviving T, you sound AMAZING.

[Minx-Maths-n-SEN]

Hi Julesie,

Thanks for your kind words. I only came on to yesterday as I'd stumbled across the teenage aspie thread. I mostly work locally in Wimbledon, sometimes just off Harley Street, and have just started with a family in Clapham. Not really sure of the best way of engaging with the Aspie girls mum crowd, but I think I really ought to try to connect.

You can't begin to know how hard life is for Aspei girls. I've had huge mental health problems over the years - tried to kill myself aged 9 - and only realised I was Aspie after two years of therapy for a personality disorder that I now know I don't actually have. I'm fine now because I have countless strategies to help me get by, but without them my life was a bit of a train wreck.

I don't want any more girls to go through the hellish time I've had just because they're neurologically different - especially when I've found lots of ways of dealing with this stuff that can make life so much more manageable. I have learned a huge amount the hard way and feel I need to share, to try to save these girls the years of despair I've had. Dialectical Behaviour Therapy works and I think it should be taught to all teenagers. DBT has utterly transformed my life.

Trust me, you don't want your girls to go through life dealing with this on their own. It's just too hard and I feel certain I can help. I actually need to help on some level. No one was able to help me but I was blessed with a very strong intellect and survival instinct. Not everyone has that.

So please, tell me how I can get involved and help you mums to help your girls.

Btw This is me: http://www.thetutorpages.com/tutor/SEN- ... -SW-London

[jomi273]

Maybe when I have got round everyone we could link up with the SW group on Facebook and organise a get together - socially for us and our girls, and another for the boys to join in as well - or we can all add ourselves to their next one...I need to go and find it and now it it is the weekend arrange some time to meet all you lovely folk....and actually is there a way we can set up a permanent group on Nappy Valley, where we can go when the darkest moments hit us to give each other support?

[Minx-Maths-n-SEN]

Hi all,

If you haven't seen this TED talk by Temple Grandin, you need to:

http://www.ted.com/talks/temple_grandin ... anguage=en

When she talks of her passion to help make the world a better place in her own particular way, she's speaking how I feel. Ive known I have a gift with kids on the spectrum for years, now I know why.

I feel very passionately that too many amazing minds aren't being supported in the ways they need, and aren't being stretched in ways that work for them. These ideas forms the basis of much of my work. I'm a self-funded researcher into learning as well as being an holistic multi sensory tutor.

Would it be appropriate to start a thread for people who'd like to brainstorm what works for these kids ? We could all throw up links to stuff we've found helpful and discuss problem solving wrt behaviour and the like. Maybe such a forum for SW London ASD exists but I don't know of one.

I've built up a huge bank of experience and ideas on everything from conveying early maths concepts and teaching reading to dyslexics through to building confidence in SEN teenagers. I'm too disorganised to write a book but I have too many good ideas to just waste them. I'm in need of practice rooms in Clapham but have no idea how to get started.

This is me, an Aspie woman: encyclopaedic knowledge of what interests me but clueless on many day to day things. Would anyone like to work with me to get something set up for those of us with an interest in teenage ASD issues, particularly in girls ?

I would be happy to let you guys pick my brains with the things your kids are doing that are driving you mental, because at heart I'm a problem solver like Temple. My areas are people and thinking because I've been studying them all my life.

Once again, apologies if this is inappropriate in any way. I'm desperate to help as many kids to be happy and reach their potential as I can, I'm just too disorganised to really run something on my own. I guess I'm asking you to help me to help you.