hfa in girls - is it worth chasing a statement?

[sanfairyanne]

hi all, so, background is a family history of hfa, my brother diagnosed in 20s, my father undiagnosed
now my daughter . . .
she has always reminded me in every way of my sister.
my sister has always been a nightmare, in the nicest possible sense: dramatic, emotional, very clingy but also very aloof, problems all her life and unable to hold down a job, amazing talents and gifts, deep thinker, philosopher, poet, amazingly intelligent but no common sense.

well now my sister has been diagnosed as having aspergers as well

and everything clicks into place . . .

none of us realised how it presents in women. my sister ticks every box. but that makes me start to wonder about my daughter. she is 8. if she is on the spectrum, she will be very high functioning, but i want her to understand about herself, be able to access any help, basically be able to help her avoid all the problems i have seen my sister face in life

this is how she is

always been super clingy to me
strong separation anxiety
v difficult to get her into new groups but once she feels settled she is fine
very chatty
very analytical including about herself her emotions and her relationships
amazing memory and attention to detail eg can remember day birthday fell on 3 years ago then calculate day it will be next year

we are now having problems with
emotional outbursts and lack of control. this is only ever at home with family.

a lot of things could just be her age eg strong imagination, collects things

why i think aspergers is because she is exactly like my sister
she was fine til secondary when everything went spactacularly wrong

any advice? thanks

[bitbap18]

Trust your instinct, it's the best thing you can ever do. You've seen it manifest itself in different ways within your family. If you suspect, get assessment done. Early intervention us key, especially as it can be such a long process.

[2boysnamedR]

I would second the above. Diagnosis seems to easier earlier. She can them get head around why she is the way she is. You will understand her better therefore help her

[Ineedmorepatience]

I agree with the others, although I am not sure if you meant chasing a diagnosis or a statement?

If its a diagnosis you are thinking about then yes definitely go for it, it is secondary where it can go pear shaped. For Dd3 school has never been great but it started to get much worse in yr 6 and this yr, yr 7 has been very hard.

If its a statement you are thinking about they are now called EHCP's (education, health and care plans) but you can apply in the same way. Does your Dd struggle at school? You will need to gatuer someevidence of why she needs more support than a school could normally give.

Either way, good luck

[Ineedmorepatience]

Ooops gather some evidence

[AttilaTheMeerkat]

I would get your DD assessed (GP should refer you to a developmental paediatrician) and apply for an EHCP particularly before she starts secondary school. EHCPs have now become the replacement for statements.

Gather as much evidence and possible and apply for the EHCP. IPSEA //www.ipsea.org.uk has a lot of information on it which I would suggest too that you read.

[sanfairyanne]

ah yes, i was thinking diagnosis so it would be there for secondary. she is doing well at school, altho i see her starting to struggle with changes/friendships.
sorry to sound dim, what kind of things would be evidence? i just know she is exactly how my sister was. her teenage years were beyond appalling in so many ways

[Ineedmorepatience]

Loads of people on here recommend keeping a diary of issues/difficulties, what causes them [if you know] and how you manage them.

Also I found it helpful to use a book such as Tony Attwood's Complete Guide to Aspergers to make some notes on how you think your Dd fits the criteria for Aspergers. I stuck post its all over mine and took it to CAMHs.

It can be difficult to get a diagnosis, especially if your Dd is not having particular difficulties at school. Some Proffs still dont see AS in girls and also some are quick to blame parenting for our children's quirks!

Make sure you tell your GP about your family history because that could make it easier to access the right Proffs to assess your Dd.

Good Luck

[senvet]

Hi
Agree with all the others.
Getting a diagnosis, unless you have just won the lottery, could take a while,
Getting what you want on an EHCP means that you need evidence that her needs cannot be met out of the school's SEN budget, (there is a bit more to the test for getting an EHCP than that, but it gives you an idea of the threshold).
On the other hand, if she already shows difficulties with social communication, then that is a special educational need, and by law the school should be meeting that need. My own relative suddenly found school too much at age 8 - apparently it was because the body language starts to come thicker and faster at that age and so he was more often making mistakes that the others didn't like without him being able to sort out what had occurred or why.

It may be that there are some things that would help dc just by way of things paid out of the school SEN budget, for example, if they have a social skills group, then that might help dd analyse social skills through the conscious channel.

The trouble a lot of people have is that a child who is succeeding in class and not causing behaviour problems and is "coping" tends to struggle to be categorised as requiring help from the SEN budget. It isn't the law, it is just that the teachers don't really get what the law is and what SEN is.

Fingers crossed your dd's school will be more switched on.

Lots of people keep a diary of all the signs both of ASD/C (Autistic Spectrum Condition is the new name) and of anxiety which helps both for diagnosis and for getting help from school. Even some photos and video clips can go in to help explain what you see.

Good Luck

[sanfairyanne]

thanks all
this is the side of mumsnet i like the most

it seems like right now is the age it is just starting to show itself. i talked to her about sspergers yesterday, in the context of her aunt, and she recognised herself in my description. she has a lot of insight and is very open and analytical about her feelings. i am hopeful that her path will be easier than my sister's.

[Ineedmorepatience]

It will be sanfairy because you will be there to help her and you know how to get support and advice!

You have the benefit of seeing how much your sister has struggled and you wont let that happen to your Dd. She is lucky to have someone who will help her find her way.

I think its great that you have already started to talk about aspergers and her aunt and herself. Even if she doesnt get a dx at least she will grow up understanding that different is cool and that she is ok the way she is and that she can be herself

[sanfairyanne]

thank you

[youarekiddingme]

I agree your DD will be fine with a supportive parent who values her and wants to support her.

My DS ways always 'different' to his peers from early age but it was 8yo when I sought a dx.

I remeber telling my mum I was taking him to GP for an assssment and she replied "well yeah, it's always been obvious he has aspergers!".

She was a teacher for 39 years so had come across junior school children with asd/as frequently.

Best of luck. We have a thread in SNchat - the Goose and Carrot. You may want to look at that and maybe join us? It's fast moving but there's no pressure to keep up or post.

[sazale]

My daughter was diagnosed at age 13 years and my niece at age 14 years (my daughters diagnosis helped us recognise my niece). Things went drastically wrong at secondary for both of them.

As a result I've picked up my youngest sons difficulties early but the CDC were unable to decide on a unifying diagnosis and discharged him at age 6. He has just turned 8 and now has a diagnosis of moderate to severe dyslexia, hypermobility, auditory processing difficulties, social anxiety (presents as selective mutism), anxiety, expressive language difficulties and fine motor skill difficulties. He also has a statement of SEN (that I had to appeal twice to get). We are waiting for a 2nd opinion. I feel his social anxiety is getting worse and that it is becoming more noticeable that he struggles to occupy himself outside the iPad/xbox.

[sazale]

Sorry I should have said that we will never know if things would have been different re secondary had they been diagnosed and supported. This is why I'm now fighting hard to make sure as much as possible history doesn't repeat itself with my son.

I now also think 2 out of my 3 sisters are highly likely to be ASD/PDA and that along with school saying they saw no issues was the reason I didn't push earlier. I just thought it was "normal" as it had been throughout my childhood.

[mummytime]

My DD was diagnosed at 9 - it has been invaluable. First Primary school to some extent had to stop labelling her with far nastier labels than Aspergers. Second I had more idea of questions to ask, and things to loo for in a secondary. Third Secondary did a lot more to help her settle in, and to help her manage her behaviour. Fourth when things have gone wrong, she has been punished by school but they have been more understanding (so she might get a detention, but they don't take things further, and treat it very matter of fact). Fifth odd things than can cause her stress are prepared for (eg. Fire Alarms).

She doesn't have a "statement" and at present is unlikely to get one, but does get help.

[sanfairyanne]

thanks all, this is very helpful