Webchat about bringing up girls on the autistic spectrum with Carrie Grant, campaigner for the National Autistic Society.

[RachelMumsnet]

We were contacted recently by the National Austistic Society who had read this thread and suggested we invite Carrie Grant to join us for a webchat to chat specifically about bringing up girls on the autistic spectrum.

Carrie is a parent campaigner for the National Autistic Society. She is mum to four children, three birth and one adopted child. The children's ages are: 19, 12, 8 and 4 years. Their needs range from Autism, Asperger syndrome (AS), AD(H)D, Dyspraxia, Dyscalculia, Tourettes and attachment difficulties. The Grants host a monthly meeting to support parents of girls with AS.

She says,: “I guess you could say we specialise in unique children! These children are magical, inspiring, creative and sometimes challenging. When you have four with needs the chances are one or other is always going to be kicking off. We are learning fast about both the system and how to meet our children’s needs".

“We long to encourage other parents on their journey and we also want to see changes made in society, a shift from tolerating or accepting difference to actually celebrating difference.”

Join Carrie this Wednesday (11th June) between 9 and 10pm for a webchat and if you're unable to join Carrie at that time, please post a question in advance on this thread.

@ScooseIsLoose

Thanks carrie I will look for the seam free socks if I may ask another question (don't worry if you don't have time to answer it) what do you think of music therapy for people with autism? Is it something you think is worth looking into for dd?

100% YES!!!! It can be the language they cannot express, the calm they need to lower their anxiety and the performance they need to gain confidence. Let's fight to keep music and drama high on the agenda in schools. I'd rather my kids listen to the great Italian composer Rossini that learn Latin!

How could you help someone who might now be an adult woman with Aspergers, but may have slipped through the net in childhood as a very quiet, shy child?
What support and help might be available to them? Would consideration of whether a diagnosis of Aspergers was appropriate be a good place to start?
I guess their difficulty in social interactions could be for other reasons too?
What else might be going on for them?

carrie thank you.

@Trijim

Hi Carrie, do you have any advice on how to handle those moments when they explode? My 4yr old daughter has ASD and gets very violent when her frustrations get the better of her. As a father I want to be there for her when she is all consumed with rage but feel completely helpless and I end up on the receiving end of her anger. Anything I do seems to inflame the situation (e.g. passively being near her, walking away which I am reluctant to do in case she hurts herself) and I'm really interested if you have found any techniques that work in these situations. Thanks for taking the time to host this webchat!

Gosh, yes I know this experience! I think the most important area to analyse is what was happening immediately before the meltdown. The sensory issues and underlying anxieties are huge for these kids. NAS has lots of help on this as does Dr Tony Attwood and I am sure various others. The main thing to recognise is that this is not you, it's her! You are not failing. I sometimes get so swept up in the moment and feel like I am so drawn into responding that it's like I'm having the internal meltdown alongside my child. Don't let them project that onto you. The catchphrase for Aspergic kids is "Calm is Smart" - I now apply this to my own thinking!

@JugglingFromHereToThere

How could you help someone who might now be an adult woman with Aspergers, but may have slipped through the net in childhood as a very quiet, shy child? What support and help might be available to them? Would consideration of whether a diagnosis of Aspergers was appropriate be a good place to start? I guess their difficulty in social interactions could be for other reasons too? What else might be going on for them?

I think the NAS website may be able to help hook her up with other groups. Forums are another area where people can chat and the internet is so much easier for people with ASD, thank God, no eye contact and only 148 characters! What could be better!

just to say it can help to turn socks inside out

also 'knee highs' can work.

@headlesslambrini

What advice, books, websites can you recommend on aspergers for parent who are just starting to go through this journey

Anything by Dr Tony Attwood also The Reason Why I Jump is amazing, All Cats have Aspergers - I used this one to introduce my Aspergic daughter to her condition and she loved it. Of course, completely ignored the Aspergers bit but loved the cats!

How do you address 'fussy eating'?

Hello Carrie (and David) just wanted to thank you for a lovely afternoon at the PTA Gold Star Awards and for taking the time to get to know us, our pupils and our school and for the great photos which are now on our website (www.epinay.org). Best wishes and good luck tonight x

@AlarmOnSnooze

Thanks, Carrie. I think I have finally managed to get school to stop using dd2 as a role model for the more disruptive children in the class (damn that auto-compliance!) as she finds being on a table with distracted noisy children far too disruptive to be able to get on with her work.

Another question if I may - dd2 loves performing. She is very musical, and also good at drama. Her year have a play performance coming up. While she is loving the rehearsals, she is finding the total change to the timetable to be very hard - essentially school has stopped (they break up in 2 weks anyway), and all that is going on is play rehearsals, sports day run throughs, and extra music practices for end of term concerts. on the one hand, this is dd2's ideal world, but she is finding it much harder than she thought she would to be in the 'wrong' place all day, and is missing her routine. any tips for getting ehr throught he next couple of weeks as unscathed as possible? sleep has already gone out of the window, and she is up until about midnight each night trying to switch off.

This is a common problem for many of the parents who come to our group. What do you do in the school holidays too! Keeping the balance of routine, stimulation and rest is a hard one. Your dd2 clearly needs more stimulation at school, (rehearsals are often a lot of sitting around) can they do more exercise with her?

Thank you carrie I will start my search for music therapist tomorrow

@dmountain

Hello Carrie (and David) just wanted to thank you for a lovely afternoon at the PTA Gold Star Awards and for taking the time to get to know us, our pupils and our school and for the great photos which are now on our website (www.epinay.org). Best wishes and good luck tonight x

HEY! Love the pic! Now in my PJ's! I was humbled by all the amazing work the PTA's do but particularly moved by the Special Needs schools. You are amazing and we are so grateful for all you do with our kids.

"Of course, completely ignored the Aspergers bit but loved the cats"
I can just imagine

Thanks for your answer - it's a family member I'm thinking of BTW
I think if I've got anything NNT myself it's more attention deficit/ or auditory processing stuff.

I think the idea of neuro diversity is very interesting - our brains must be so amazing no wonder they're all a little bit different from one another's

@funnyperson

How do you address 'fussy eating'?

......and only eating with one plate, knife, fork, sitting at one place around the table, no foods touching, all my other kids kicking off because same rules not applied to them!! Yes I hear you! I try to get mine cooking, that way they are involved in the process with all its sensory accompaniments. Some things are worth fighting for and others we have to let go. If I pander to all their plate/table demands but insist they eat all their veg an try one new food then for me, I have succeeded! Others may look on and think it's feeding time at the zoo but I know that this is a good day, I have done well and my kids are being great!

@JugglingFromHereToThere

"Of course, completely ignored the Aspergers bit but loved the cats" I can just imagine

Thanks for your answer - it's a family member I'm thinking of BTW
I think if I've got anything NNT myself it's more attention deficit/ or auditory processing stuff.

I think the idea of neuro diversity is very interesting - our brains must be so amazing no wonder they're all a little bit different from one another's

Totally agree, isn't it that difference that makes us all interesting! Celebrate difference!

@nataliejaynec

I have a four year daughter who has behaviour issues, no formal diagnosis, she has prolonged tantrums,difficult to calm down, having difficulties in school. My mum thinks she maybe on the autistic spectrum, I could do some advice.

I would start with [email protected]

Ahh, what a nice answer. I'll quote you on that!

First time I've used webchat but sharing information and ideas can help a lot of parents/carer and can be a useful resource that schools can help develop (aka keeping up with technology!!!!).

@mummytime

I have an 11 year old DD with an Aspergers diagnosis (yes it actually says that in the letter). She is about to change schools - so any tips on that. Or why she only has violent meltdowns at school - but never at home (I suspect it is partly because we all, including her siblings, recognise the signs better than school and allow her to flee, so she doesn't fight).

Thanks for being here.

School needs to get your strategies. New school advice: meet with the SENCo and grill them to within an inch of their life, follow up with what was agreed in writing then send them a thank you for listening card!

@dmountain

First time I've used webchat but sharing information and ideas can help a lot of parents/carer and can be a useful resource that schools can help develop (aka keeping up with technology!!!!).

Agreed - took me ages to work out how to get on here tonight! Born too long ago!

Not a girl with Aspergers but a little boy. He is 6 but having issues with him seeing things as they are and not having any tact!! He is upsetting a lot of children by saying things he sees that to him aren't right or by describing someone and using language that a NT person wouldn't use! Any ideas on how to teach him to be more tactful??

thanks, Carrie - exercise is a good thought, but the absoulte sheer horror that is PE (dressing/undressing, unable to guage temperature, so wears shorts/t shirt in winter, and a full tracksuit in summer, wrong fabrics, too much noise - has to wear trainers) makes that unworkable (well, until school wise up a bit more, anyway)

school holidays arent too bad here - she settles happily into home routine rather than school routine, although now ds is nearly 2, and into everything, I suspect this summer is not going to be as peaceful as last summer!

Any last questions?

How did you feel as a parent when you first heard the AS diagnosis?