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.

[CarrieGrant]

@davidsotherhalf

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.

Davidsotherhalf I wish I could say I'm shocked but sadly your situation is far too common. The issue is that our hospitals are built for critical care and not long term conditions so the idea of coming alongside someone until they can learn to self-manage is alien. We need an integrated help, social, medical, community based set ups. It does sometimes seem that once a person with special needs goes out of the education system they are left to the third sector

[CarrieGrant]

@chrissb

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.

Chrisssb The subject if PDA is a fascinating one. My friend Ruth Fidler has written a great book on it out on Jessica Kingsley Publishing.

[CarrieGrant]

@RevoltingChildren

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.

RevoltingChildren one of the reasons I feel so positive about different learners is that our industry is full of people who would be diagnosed as being on the spectrum. They are the world-changers! Artistic people, especially those with ASD can be very sensitive to criticism, perceived or real so a good support network is essential. My 19yr old is studying at The Guildhall but lives at home so she can still have a nurturing environment. Being able to talk, share and unload is essential and that's where our parenting often gets strained. Time, patience, understanding, empathy, learning how to respond these are all skills we are all learning and sharpening.

[CarrieGrant]

@yorkshire69

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.

Yorkshire69 I hear you loud and clear! I think I've had to learn to ask, put in writing, ask again, insist, fight and keep fighting. I hate the fact that we spend so much time having to fight to get help that this impacts the much needed energy required to parent children with needs. Find just one person who will listen and spread from there. Sadly, we often have to educate the educators as there still seems to be very little knowledge or geographically sketchy knowledge of the conditions. The more we are able to communicate their needs the more others will understand. Dyscalculia for instance impacts my daughter as she cannot tell the time, getting to classes, waiting for 10 minutes, meeting deadlines all become a challenge. Meet with the SENCo and go armed with questions!

[CarrieGrant]

@Meglet

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.

Meglet I could cry when I think about the lack of diagnostic expertise there is for girls. Generally speaking the Aspergic girls don't kick off in class so therefore no problem to teachers. The teachers commend their compliance, mistaking it for sweet-natured contentment. All the time they are slowly melting down inside, desperate to be heard, feeling isolated, misunderstood and like misfits. .........and when they get home, we parents have to deal with the fall out, the anger, rage, suicidal thoughts etc so much more needs to be done!

[CarrieGrant]

@JennyOnTheBlocks

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.

JennyFromTheBlocks Low self esteem is a big issue, I sometimes liken it to pouring encouragement into a sieve! Well done with your group. Also more people need to know about Sensory Processing - huge part of our kids' lives. And with this how about our public areas take time to think about any adaptions they can make to help with SPD. Squeaky doors, bright lights, multiple sounds all going off at once!

[CarrieGrant]

@ScooseIsLoose

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!

ScooseIsLoose Clothing issues, food issues, sleeping issues, mood issues- all of these things can be kicking off at once. I guess know your battles. My autistic dd 3 wants to wear the same grey tunic and tights she wears for school every day, at home, parties, weddings etc. To begijn with I tried to insist she changed into home clothes but I then realized this was probably a phase and maybe better to concentrate on the more difficult issues at hand rather than what she’s wearing. Part of me feels I need to explain it when we go out but I’m also very proud of her and so what if she’s in school uniform! Shoes and socks more tricky, maybe look at seam free socks – do they exist?? Sandal shoes.

[CarrieGrant]

@thornrose

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.

Thornrose yes we host an event once a month to support parents of girls with Aspergers as we feel these are the least diagnosed and therefore least-helped group. Barnet Autism Advisory Service kickstarted us but people come for miles so great is the need. Some parents have not spoken to another soul about their girls for a decade or more.

[CarrieGrant]

@Alarmonsnooze

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.

AlarmOnSnooze Gosh I so get what you are saying, experience all of your comments! Hard to get the girls help. I love attending Dr Tony Attwood’s conferences – thoroughly recommend. As most of the Test results come from analysing boys all of our girls look atypical! [email protected] has just about everything you could need in terms of info! Age 7-10 can be so tricky as the frontal lobe of the brain develops and lots of changes happen to the children which impact their lives.

[headlesslambrini]

What do you think about the new SEN reforms due in September?

[KinkyDorito]

jenny please can you link to your Facebook group?

[SpannersJenkins]

Hi Carrie, I'm a mum of an 9 yr old with ASD and also a teacher. Can you recommend anything I could do to help parents / children integrate with school and get through GCSEs a little easier?

[CarrieGrant]

@jillycats

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?

Jillycats definitely adopted children with attachment difficulties or trauma can present in a similar way to autistic children. My 4 yr old adopted son does all the things my autistic dd3 did at nursery. Squeezes into impossibly small spaces, hides, won’t relate to other children, won’t join in, won’t sit on the carpet. The difference is that he will respond to strategies more easily than an autistic child. Trauma Therapy has been AMAZING!!

[CarrieGrant]

@SpannersJenkins

Hi Carrie, I'm a mum of an 9 yr old with ASD and also a teacher. Can you recommend anything I could do to help parents / children integrate with school and get through GCSEs a little easier?

People like you are a gift, we need more of you! You are a bridge between what we deem to be neurotypical and special needs. Just also want to say on the subject of "neuro-typical" can we start using the term neuro-predominant? Who's to say what's "normal" - it could be that ASD people are the more evolved of the species!! Not sure about the GCSE stuff specifically but we do know that our kids will have unusually high levels of anxiety so all the stuff we do to help with this. I love Dr Tony Attwood's CatKit - brilliant tool for language/anxiety/communication.

[headlesslambrini]

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

[CarrieGrant]

@headlesslambrini

What do you think about the new SEN reforms due in September?

Need to know more about this. I guess I need to check it out o the NAS website. I was at the PTA Awards today and met a lady who heads up Nasen who deal with some of this stuff so will be picking her brain!

[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?

[CarrieGrant]

@FutureMum

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.

Check out the home environment that it's all set up for either calming dd down or winding up - as necessary. All the teaching around Sensory Processing is SO vital. We have a no homework until they are 11yrs policy - no proof out there that kids get better results for doing homework aged 5!

[CarrieGrant]

@KinkyDorito

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.

Firstly, so sorry to hear what you've all been through, how awful for you. I hope dd gets better soon. I recently heard (Dr Tony Attwood) that many women with Aspergers by the age of 22 would not be diagnosed, so intelligent are they and so able to learn social cues as script that they are able to blend in. This, of course may prove to be a huge advantage in relating to the outside world but not so good for the person's inner world. Good friends and I'm talking one or two here, is all that's needed and these folk can cope or flourish even. I know many Aspergic women who are awesome and do well in life, hold down relationships, have children, work etc.

[FiveGoMadInDorset]

What I find so frustrating is the effort it has taken to get DD to be seen by CAMHS in the first place. I work for a mental health team that works in prisons but they have been such a godsend in pointing us in the right direction and giving us the confidence in going back to the GO requesting a referral. How can we get professionals trained in recognising that actually parents know their own children best of all and to nit just dismiss them?

[RevoltingChildren]

Thanks so much. We know a couple of people at Guildhall - hope your dd is enjoying it.

[CarrieGrant]

@FiveGoMadInDorset

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.

This sounds like one for CAMHs. Getting the balance of "knowing your battles" and putting in boundaries is hard. In a way you need support. I truly believe us Mums can cope with these amazing children but we need help and the tools to do the job. When I went to CAMHs about one child they looked at the overall picture and offered me help, which I gratefully received. It got me through the crisis and enabled me to grow, learn and prep myself. We do need to look after ourselves ladies, that's why support groups and stuff like this are so important.

[CarrieGrant]

@FiveGoMadInDorset

What I find so frustrating is the effort it has taken to get DD to be seen by CAMHS in the first place. I work for a mental health team that works in prisons but they have been such a godsend in pointing us in the right direction and giving us the confidence in going back to the GO requesting a referral. How can we get professionals trained in recognising that actually parents know their own children best of all and to nit just dismiss them?

AGREED!!! Just replied similarly to another!!!

[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.

[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!