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

(122 Posts)
RachelMumsnet (MNHQ) Mon 09-Jun-14 16:57:40

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.

LeftyLoony Mon 09-Jun-14 18:36:40

Hello from a fellow parent of multiple children with complex needs. I have three children with ASD, AS, ADHD, sensory processing disorder, severe hypermobility, hearing impairment, visual impairment, renal and cardiac problems and one of them currently being assessed for dyspraxia and dyscalculia.

I'm wondering if you found it was much more difficult getting referred for assessment with a girl? Personally I found it much more difficult and the assessment process much more difficult as they present differently to boys and the whole thing just seems so geared to boys.

Also (sorry cheeky little extra) do you know of any learning resources for dyscalculia as we're not getting much support from school and are attempting to work on it at home.

Many thanks smile

Hi carrie my daughter is nearly four and has autism, she absolutely loves the pop shop programme you do with your husband as she is obsessed with music and loves to dance!. My question is do you have any advice on how to deal with the sensory issues? My daughter has recently started refusing to wear shoes and socks and will lash out,cry until they are taken off. This is obviously not practical and as it's a new development I'm unsure on how to deal with it and how I can help her. Also she is pretty much non verbal and so can't tell me what the matter is. Any advice would be gratefully received. TIA and if dd could talk she would say thank you for making pop shop because she loves it! She can't speak much yet but she loves to sing!

FutureMum Mon 09-Jun-14 20:17:57

Hello carrie, we actually met once when you visited a school I used to work in for a recording. My child had no symptoms then and like many others I knew nothing about asd.
My question for you is what would you do to help a three year old develop joint attention? She loves music, movement and tactile. Turn taking is v challenging too.
Thank you.

thornrose Mon 09-Jun-14 21:07:21

Hi, I remember reading an article on your family and I was blown away by the range of issues you have to consider. Hats off to you!

I have a daughter who has Aspergers, dyspraxia and dyscalculia, she is 14. I find it frustrating that there is very little help out there for teen girls on the Autistic spectrum and I wondered if you felt the same way?

I would love to find some kind of social skills group or similar but there doesn't appear to be anything out there. My dd is struggling at (mainstream) High School with friendships and has become pretty isolated. Meeting other girls on the spectrum could be make her feel less isolated.

I notice that you host a monthly meeting for parents of girls with AS, I wish there were more of them.

Kif Mon 09-Jun-14 21:12:06

Completely OT - is she still with the Mr from Pop Shop - they seemed like a great couple [heart]

AlarmOnSnooze Mon 09-Jun-14 21:35:21

I have 2 girls on the spectrum. dd1 has severe ASD, and dd2 has AS.

They are both 'atypical', in that neither displays 'typical' autism characteristics.

I have found it almost impossible to get dd2's school to take her needs seriously, as most of the time she Passes For Normal. She is only 7, in year 2, and so we are yet to encounter serious issues. I am under no illusion that her school life will continue to be this smooth.

Do you have any tips for getting a school to take a diagnosis seriously, when the child is performing well academically, and mostly will not meltdown at school, rather saving this delight for home. When she does blow at school, it tends to be over things she cannot do well (performance anxiety and perfection being major issues for her), and so her tears of frustration tend to be put down to emotional immaturity (well, duh!) rather than sensory/overload/anything taken seriously.

I cannot get the school to understand that, just like a swan, she may appear serene and troublefree on the surface, but that underneath she is a whirlwind of nervous energy, paddling like mad to try to keep on course.

LeftyLoony Mon 09-Jun-14 23:21:50

Alarm - completely get the Passes For Normal. Took two terms in special school before she kicked off properly. Now they're supportive but I do get the 'are you sure she's autistic' all the time.

AlarmOnSnooze Tue 10-Jun-14 00:17:02

I get that with dd1, Lefty, and she attends a highly specialised ASD school. There are parents there who can't believe she 'belongs' there (for want of a better phrase), and one or two tutors who also think the same (funnily enough, they are not tutors who have much contact with her!)

dd2 is at a mainstream school, and likely to stay there - without her school recognising any needs at all, she is unlikely to ever get a statement (and certainly doesn't need one atm). But the staff all think I am deluded for thinking she has AS, despite the dx.

AtYourCervix Tue 10-Jun-14 13:01:30

Hello. I'm working tomorrow.
My daughter is 16. She was finally diagnosed with Aspergers at 13.

We're now facing the what ifs and what nexts of after school. Any advice?

AlarmOnSnooze Tue 10-Jun-14 13:15:38

Can I sneak another question in?

Do you think that finally, ASD in girls (especially higher functioning, subtle cases) is becoming more recognised, or not? If more help could be given to girls like my dd2 before crisis happens, then a lot of angst could be avoided. I think it is certainly more talked about, but i am not so sure that ensigns are being noticed early enough in many cases.

jillycats Tue 10-Jun-14 14:28:29

My daughter is adopted and currently professionals working with her are querying if she is autistic or has attachment issues (she also has Down's syndrome), what differences/similarities do you think there are between autism and attachment disorder?

YesAnastasia Tue 10-Jun-14 14:54:03

I love having the opportunity to ask questions of those I admire - thanks Carrie & Mumsnet.

My son (nearly 5) has AS and has a love of music & performing. I believe this is partly to do with connecting to people without actually having to connect and his complete lack of fear/inhibitions. I like to also believe he's very talented too smile

Do you have any advice on how to nurture and gently encourage this desire without pushing him and having him resist. Are there games or exercises we can we do/play at home?

worried1984 Tue 10-Jun-14 14:55:58

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

worried1984 Tue 10-Jun-14 14:59:53

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

LeftyLoony Tue 10-Jun-14 15:33:41

That's incredibly offensive.

Upandatem Tue 10-Jun-14 15:43:52

worried1984 what are you talking about? DS1 goes to a specialist HFA school, it was that or continuing exclusion at 7, and actually it's been brilliant for him. He sees that there are other DC just like him and that he is not the only one who feels as overwhelmed by the world as he does.

There will be no hiding his education from others in the future, especially prospective employers, and there's no need for him to. He is what he is and what he is is great.

Upandatem Tue 10-Jun-14 15:45:14

And all of his neurodevelopmental and sensory difficulties manifested themselves as behavioural problems, what else was he supposed to do in order to effectively communicate that he simply could not cope?

Upandatem Tue 10-Jun-14 15:46:05

jillycats, have a look at PDA strategies. They might help whatever the cause of the difficulties.

autumnsmum Tue 10-Jun-14 15:49:17

Worried 1984 I've reported your disablist and offensive post , my dd2 has moderate autism and attends special school it's a diagnosis not a label

Upandatem Tue 10-Jun-14 15:49:53

I did laugh at one professional who said DS1's main problems were actually BESD rather than autism, erm, yes, because of his neurodevelopmental disorder and attempting to force a square peg into a round hole. Wouldn't you do whatever you could to escape the torment, stress and panic of lack of understanding and noise? Things are so much better since he moved to a specialist school.

Upandatem Tue 10-Jun-14 15:52:03

Carrie, have you read the theories that a lot of eating disorders in girls may be linked to undiagnosed neurodevelopmental disorders? What do you think of it? PDA for example is characterised by an overwhelming need for control in order to keep anxieties at bay. There is no greater control than what you do/ don't eat.

abijanzo Tue 10-Jun-14 15:57:07

Our 9 yr old daughter was diagnosed with High functioning ASD last year.
The 'label' confirmed so much we already knew and helped us to better understand some of her frustrations and challenges. Suddenly everything clicked into place.
School have been fabulous although Aspergers in a female student was definitely a new one on them! They had not seen a girl with Aspergers and found that the emotional support she needed was unique and not something they had encountered with boys. It has been a learning curve for us all.
So, to my question:
What do you think are some of the practical ways we can emotionally support girls with ASD?

Mollyweasley Tue 10-Jun-14 16:24:24

worried1984 Some people's life are very seriously affected by autism spectrum disorder, what you have said is indeed incredibly offensive and hurtful. You clearly have a lot to learn on the subject may i suggested you start by consulting the national autistic society website.

Meglet Tue 10-Jun-14 16:30:50

Marking my place as a mum with diagnosed ASD and a 5yo who I'm damn sure has it, but the paed says "is fine smile". hmm

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