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.

I have a DD dx with ASD and who is acknowledged by CAMHS OT as having significant sensory processing difficulties. I'm also joint admin for a very strong and supportive facebook group for parents of girls and women on the autistic spectrum.

I haven't got a question really, but wanted to say thank you for helping to raise the issue of women and girls not being recognised as autistic.

I too am very interested in control by food, and also how to deal with self image/esteem in a society that focusses so much on this.

Jennyontheblocks could u give me Link to FB page pls?! I'm mother to 42 yr old daughter, diagnosed w schizoid affective, but prob has undiagnosed aspergers, which in turn meant serious MH issues at puberty, as nothing was addressed and I had no idea, other than she was slow learner. It has caused us untold misery. I will b so interested to follow this q&a.

My autistic dd + puberty = hell

Any tips re periods/body changes ( tried social stories but ok use)

Or just tell me the best discount at the moment on ?? as that's what getting me through ??

I have two boys and both have autism. I just want to say thanks for coming here to talk to us and thanks for raising awareness. I do feel that awareness of autism is getting better, but still has a long way to go.
Do you have any ideas yourself as to what the causes of autism are. Since my second was diagnosed and although they are complete opposites on the spectrum, I do feel that it is down to genetics for us.

carrie have you noticed any improvements in diagnosing girls with ASD? Or are parents being brushed off until things hit crisis point?

My parents spent years asking for help with me and were always told "she's bright, she's fine!" (this was in the 80's). And then I became a teenager and we all went to hell and back.

Hi carrie please could I ask you went about getting a diagnosis for discalculia. We are finding it very difficult to find someone who will assess. We have a son who has aspergers and we are going through the process of looking for a senior school for him that will meet his needs. Our main problem which I think many parents will agree there is little or no choice in our area. And have seriously considered home schooling. Thank you for taking part in this discussion.

Being in the performing arts industry would you have any advice on how a girl with suspected aspergers would cope in that environment.

She is currently at a specialist vocational school for dance & musical theatre but is struggling socially & has had a few meltdowns in dance class when things don't go right. She is very over critical of herself.

We never suspected any problem until she started this school although she dud have some probkems in primary. Her teachers picked up on it very quickly & have arranged for an ed psych. We knew she was obsessed with singing & dance but saw it as a talent rather than as typical aspergers obsession.

Hi Carrie, I have two adopted daughters (now young adults) and a grandson who lives with us most of the time. His mum has ADHD, dyslexia, and dyscalculia, as well as social communication difficulties. My grandson has all of these and is really struggling. But my question concerns my other d/d (aged 27). As a child she was diagnosed with attachment disorder and as an adult she has been diagnosed with Borderline Personality Disorder. However, I recently read something about girls with asd that made me wonder, and then i heard about PDA for the first time and had a 'lightbulb' moment. I really think that although she probably did/does have attachment disorder she may well also be on the autistic spectrum with PDA. The problem is, it seems impossible to get a diagnosis as an adult on the NHS? I haven't told her about the possibility of PDA yet because I'm not sure what help is available. She has never worked and is living in supported accommodation. I just don't know where to go from here. Unfortunately I won't be able to join the webchat tonight but would appreciate any advice. Thanks.

what are your views on young adults with asd. who develop mental health issues and being refused treatment? my dd is 20, she's been diagnosed with ptsd, she self harms, she is classed as high risk suicide. we have been told adult mental health do not treat anyone with asd dx. we have been told if we wait another 2 years then treatment might be available.

I was diagnosed last year with Aspergers Syndrome following my son's diagnosis. The experience has left me with the strong need to help others who might be unaware that they are living on the spectrum and raise awareness. I am particularly interesting in training professionals. The trouble is I don't know where to start, would you be able to point me in the direction?

Hi Carrie, we're about to get my DD aged 11 assessed for Aspergers. She is currently under the care of CAMHs for anxiety issues and the fall out of being the victim of bullying. Having read up on the National Autistic website and various threads on MN, I'd be very surprised if she doesn't have Aspergers, and in a way it would be a bit of a relief as it would explain a lot.

She is currently unaware that we're going down this route as I think it would cause more anxiety. Have you any advice in how we speak to her about it if and when the time comes? Thanks.

Hi Carrie. DD (9) recently diagnosed as HFA. "Mild but significant". She behaves at school, but is objectionable and angry at home, often having tantrums and refusing tasks.

I am wondering what we can expect for the future regarding school??? She is currently in a small lovely prep school, where her lessons are all in the same class room, mostly with the same teacher.

What kind of senior school do you think we should look for? What can we expect as she grows up?

Also, any tips for supporting her through fathers cancer treatment?

Thank you.

Hi Carrie, apologies for this strange question! Have you come across any occurrences of some girls on the spectrum being able to communicate more freely by singing, rather than talking?
My DD had significant speech and language delay, and got dx of ASD a couple of months before her fourth birthday. She is five now, and goes to mainstream primary with one-to-one support. She is really sociable and her behaviour is pretty good; her biggest challenge is communication. Her speech has always had a very sing-song quality, and she has hardly any trace of our distinctive local accent. Her talking has progressed so much, but it has quite a forced, stilted quality about it. What I have noticed though is that if she communicates to me by singing, as opposed to talking, she is much more fluent and expressive. She can also sustain conversation for longer by singing, rather than talking; it seems to be much less of an effort for her.
I don't know where this comes from because sadly my husband, her older brother and I are all completely unmusical and tone deaf
All the best to you and your family.

Comment not a question. When Sure Start workers who were working both with my twins and a lad with Aspergers suggested I had Aspergers (which until that point I'd never heard of) it was because of similarities between me and this lad. If my aspergers hadn't been similar to the male pattern of symptoms, even though I am female, I would never have known.

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 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.

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My DD aged 8 is just going through the assessment process, we always knew there was something slightly different about but it was trying to get that recognised by the professionals which was the difficult part. She is still under a pedeatrician for toiletting issues, she refuses to poo on the loo, this has been going on since forever. She is now sleeping in our room as she refuses to sleep in her own room. She screamed and screamed, pulled her hair out last time we attempted it and as we run a B&B we don't get any length of free nights to try and establish this. I wll be going upstairs in 5 minutes as she won't go to sleep without one is us in her room as her anxiety levels are very high. School don't recognise a problem as she is very bright, she suffers from name calling and bullying and tells the teachers but I am getting disollusioned about what they actually do. The last major one was two reception boys sitting on her and spitting on her egged on by two of her "friends" but she won't fight back.

Anyway thanks for coming on and rant over.

My DD is 15. She is Asperger's and 'lost' three years of secondary school to chemo when she got leukaemia. Firstly, I think someone needs to train staff across the NHS in autism awareness as it is incredibly difficult for ASC teens to accurately express how they feel physically and this led to much confusion and difficulty throughout DDs treatment.
Secondly, I really could do with some reassurance that adult women with Asperger's do cope it the real world as, at this stage, I can't ever see DD leading a life independent of me. She seems to struggle with everything, even though she is academically very bright. Many thanks for any comments.

The webchat will be getting underway v shortly.

Thanks again Carrie for taking the time to talk to us today Looking forward to an interesting discussion!

Test worked! Welcome. If I may be cheeky and sneak another question, have you got any tips to help with smooth transition between activities at home, esp. At the end of a long nursery day when you are short of time before Dd needs to go to bed, between dinner and bath etc.. When sometimes for no obvious reason she loses it. Thanks.

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@catclarks

Hi Carrie, we're about to get my DD aged 11 assessed for Aspergers. She is currently under the care of CAMHs for anxiety issues and the fall out of being the victim of bullying. Having read up on the National Autistic website and various threads on MN, I'd be very surprised if she doesn't have Aspergers, and in a way it would be a bit of a relief as it would explain a lot.

She is currently unaware that we're going down this route as I think it would cause more anxiety. Have you any advice in how we speak to her about it if and when the time comes? Thanks.

Catclarks When do you tell your child? Good question. I think you have to set your mind to being prepared to talk about it and think about what you want to say in advance. Then wait for the opportunity to arise when it feels natural and helpful. When we first hear the word Aspergers or Autism or any condition or description we each have our own perception of that word. The key is firstly what and how we think. We have our journey with the condition. When we can find the benefits then we are ready to share

@Mollyweasley

I was diagnosed last year with Aspergers Syndrome following my son's diagnosis. The experience has left me with the strong need to help others who might be unaware that they are living on the spectrum and raise awareness. I am particularly interesting in training professionals. The trouble is I don't know where to start, would you be able to point me in the direction?

Mollyweasley we are going to see many more adults getting diagnosed in the next decade, finally things falling into place for them but for others fear about what it means. Autism Oxford are doing great work using diagnosed adults to train people. Well done you!