females struggling for diagnosis

[lsw146]

HI,

my DD is 16 and we have been in and out of the CAMHS (Child and Adolescent Mentall Health Service) on and off for 12 years trying to get answers to, as the recent locum consultant put it , 'the nature of her difficulties'. I wondered if there is anyone else out there who has been searching for answers and been seen by professionals but sent away with fuzzy thinking. Or anyone who got a diagnosis late on.

 

DD has NEVER had a formal assessment for ASD even though we have requested it. She is an intelligent A/B grade student with a lot of social aprehension and confusion, she has anxiety symptoms but I wouldn't say she was anxious and hates uncertainty and change (and multiple other attributes it would take to long to express) and recently she is studying psychology at A level has has completed the Simon Baron-Cohen online Asperegers Quotient screening with a score of 42 and Eye Epression test 4/36 and this has provoked her into wanting an answer. She knows that a diagnosis won't change the ways she views the world but says she feels 'stupid' and if they said she had ASD then she would know she is not 'stupid' just different.

I can sort of understand what she is saying, I think at the moment she feels she has to work really hard to try and change everything about herself because others won't accept her (not us) and she doesn't know how to do this, but if she knew she had ASD then she could adapt rather than try to change because her differences are inherent and not something she can just 'get rid of'. She has gained a lot of coping strategies over the years and learnt a lot of social skills so I feel she 'masks' very well but she obviuosly feels chaotic inside and it is exhausting for her.

 

Thanks

Jo

 

PS sorry for any typo's it's not my greatest skill!

[leeds_demon]

Hi Jo

 

Have you asked to be referred to an assessment centre, such as the Sheffield Asperger's Unit?

 

Is it important that your DD is accepted? Is she popular at school/college?

 

As a kid, I wasn't all that popular at school, college or uni. If I had been diagnosed with Asperger's at a young age, I don't think my life would have changed all that dramatically. Even at the age of 41, I wish that I had friends and was able to mix with people, but I don't have many friends and can't really mix with people.

 

Your DD needs to realise that she doesn't have the problem, it's other people that have the problem, by not being able to accept her. Why should your DD change? Has she any interests? Are there any social groups, which cater for people with her interests?

 

You need to get a Consultant Pshychiatrist/Clinical Psychologist to assess your daughter and then refer your DD for assessment at a unit which specialises in assessing people with ASDs.

 

My parents worry about me - that I don't meet people and don't socialise. But the thing is I can't be bothered to. As for your DD, tell her that she doesn't need to change; people have to be more accepting of her.

 

But you really do need a concrete diagnosis, even for your DD's peace of mind.

[lsw146]

Hi Jo

 

Have you asked to be referred to an assessment centre, such as the Sheffield Asperger's Unit?

 

Is it important that your DD is accepted? Is she popular at school/college?

 

As a kid, I wasn't all that popular at school, college or uni. If I had been diagnosed with Asperger's at a young age, I don't think my life would have changed all that dramatically. Even at the age of 41, I wish that I had friends and was able to mix with people, but I don't have many friends and can't really mix with people.

 

Your DD needs to realise that she doesn't have the problem, it's other people that have the problem, by not being able to accept her. Why should your DD change? Has she any interests? Are there any social groups, which cater for people with her interests?

 

You need to get a Consultant Pshychiatrist/Clinical Psychologist to assess your daughter and then refer your DD for assessment at a unit which specialises in assessing people with ASDs.

 

My parents worry about me - that I don't meet people and don't socialise. But the thing is I can't be bothered to. As for your DD, tell her that she doesn't need to change; people have to be more accepting of her.

 

But you really do need a concrete diagnosis, even for your DD's peace of mind.

 

Thanks so much for your reply. We have been back to CAMHS and seen a really great guy has given a diagnosis of Aspergers! We laughed and cried after we came out of the final meeting and my DD has used her diagnosis as a tool of improvement with school and friends. She is quite a social girl and does want friendships, although she is starting to understand that being a nice person doesn't mean you will be friends with everyone, but her friend groups find it as difficut to keep up with her as she does with them.

She is actually going of on a day trip with some school friends tomorrow. I am very excited for her but at the seem time am full of wonder at how she will get on and whether she will feel she has to 'pass' as being fine when she is really overwhlemed. They are going to a zoo and the last time we tackled that it wasn't great but this time I think she may find it easier to say when she doesn't like/want to do something because she knows that it isn't the wrong way to think just a different way.

She has told most people she knows and has had some really positive reactions with lots of her friends and most of her teachers asking how they can help her or suggesting ways in which they will adapt to make her more comfortable. For example she tyold a group of girl friends how she can't keep up with the gossip and chit chat and it makes her feel physically sick and it is because of her Aspergers. They told her they thought she was being standoffish and just didn't want to talk to them so they have said they will try not to change topics to quickly or too often and to fill in the 'missing link' of conversation if she doesn't get what's happening BUT they have also said that if she needs to go off on her own they will leave her alone for a while until she feels comfortable to come back and join in. it is amazing how such small changes in other people's expectations and understandings can make such a huge difference to her.

I had spent a lot of time just before the diagnosis telling her how hard she has worked to be able to do the things she wants to do and how it is time for people to accpet her and alter their behaviours as well and the diagnosis seems, on the whole, to be making that happen.

Thanks again

[mysti]

I'm really pleased your daughter has got a diagnosis and is finding it helpful. I'm 20 but can certainly relate to much of what you said about your daughter and her difficulties in the initial post. I'm seeking a diagnosis at the moment.

 

Molly x

[Tally]

She knows that a diagnosis won't change the ways she views the world but says she feels 'stupid' and if they said she had ASD then she would know she is not 'stupid' just different . . . I think at the moment she feels she has to work really hard to try and change everything about herself because others won't accept her (not us) and she doesn't know how to do this, but if she knew she had ASD then she could adapt rather than try to change because her differences are inherent and not something she can just 'get rid of'.

 

Sorry I missed this when you posted it back in February.

 

I'm glad your daughter finally has a diagnosis

 

Those things she is hoping a diagnosis will bring are how my own diagnosis has helped me. Hopefully it will be the same for your daughter too. There is very little formal support for adults with Asperger's, but by talking with others I have learned a lot of coping skills that work for me and I am getting better at coping with things. I would recommend your daughter seek out others with Asperger's, either in person or online, as it's something that has really helped me a lot.

Edited April 8, 2011 by Tally

[lsw146]

Well DD had a great time at the zoo and came back as a giraffe! Such an achievement I don't think she realises how much. She did a dance lesson face paint and all and ( when she wasn't there) her dance teacher said she had her her talking to the othe girls about her diagnosis and how positive she is at the moment.

Just frustrated that 5 weeks since diagnosis still no report and the locum leaves today - all they can do is apologise! I would like to know what the psychiatrist is going to say but more than that, one of the reasons for diagnosis was so a professional point of view could be given to school.

Molly good luck. I hope you find what you are looking for and that your outcome is as positive as ours had been.

Tally thanks for your advice we are looking into local groups and some time in her diary! People have always said she does too much but for her there is much more stress in doing too little

[bonbons]

Hi jo. Read your post with interest as my DD who is 15, only received her AS dx last year! For us as parents, it was a relief as explained so many things.... Very much like finally having all the jigsaw pieces and seeingvthe whole picture! Everything made sense, yet so far at leat, that is not how my DD has felt!? She is very much on the' I really don't care about my dx' frame of mind, which I tell her in a way is a good thing as aspergers is just a part of who she is yet I sense that underneath she is struggling to come to terms with it still and has said that she just wants to feel less different not more different! She starts a new Specialust school next week and we are hoping that, given time, she will learn to be more accepting of herself and her diagnosis and I hope she may make the positive steps that your DD has!! Good luck .

Beverley. X

[gazmcfaz]

!!! 42 is really high! I did that test and got 36! Could you please describe in more detail what difficulties she has, perhaps ask her why she gets anxious. Does she have trouble with eye contact and understanding how people feel? Getting a proper diagnosis is a good thing, A.S isnt a form of low intelligence, its the way the brain has developed differently, better in some areas than in social interaction, probably why its so draining for her, having to think so hard about what to say and do!

[247]

Hi Jo

I just wanted to say thank you to yourself and your daughter. My dd is just 7 and textbook aspergers but no one wants to diagnose before 7 because they dont want to 'Label' her. I home school and have good and bad days, I sometimes wonder if I should bother going through all the rigmorol of fighting to get a diagnosis. The recent late easter/bank hols/then very short term followed by another holiday has thrown her routine completely out and I am finding the older she is getting the more reliant she is becoming on things like routine, she seems to have spent so much time crying and screaming lately and is always so anxious about EVERYTHING. I feel I'm fighting a constant battle to keep her calm and stop her melting into hysteria about every little thing.

 

Anyway I had a really bad day yesterday and turned online to see if I could find someone who has a 'girl' like mine. I found your post and it has really given me the strength to fight on. Reading about the difference in your daughter before and after diagnosis has confirmed to me that she does need a diagnosis for herself as much as anyone else, especially as now she is getting older she is realising that she is 'different' and that is just another thing for her to agonise over. Thank you

[lsw146]

Hi All, sorry not to have replied but it has been a whirlwind of a year! Shortly after her diagnosis my DD auditioned for dance school and has been living independently since September!!! I don't think we could have done this without the diagnosis because she started her year away with weekly counselling sessions and throughout the year had regular learning support meetings. On the whole she has managed amazingly well although her college peers tended to shun her quite a bit, she found herself a loving and understanding boyfriend who seems pretty good at helping her when meltdowns begin (sometime makes me worry more about him than her!) College has been great at trying to differentiate the curriculum for her, which is fantastic because she auditioned for the degree course and heads back there in September for another 3 years.

 

247 I hope things are going okay for you. Life with AS is never simple for us NT's. DD is back for the holidays and 15 year NT sister is not loving it at all. we forget what it like to tread on eggshells but we still all have open conversations about helping each other be comfortable.

 

I popped back on because I had been filling in the disabled Students Allowance forms for her and the forum popped up ion one of my searches for information. It's nice to know we all have a place to come! <'>

[Aspiemumto1]

Reading through the posts is interesting. I have a 16 year old daughter. We have been waiting since February for a neurodevelopmental check for a diagnosis of Aspergers. However, the more I learn about it the more I think she has it. We are also under CAMHS and last week the consultant hinted that the developmental check woould just confirm the diagnosis for us. For me thats really positive and I know my daughter wants to know one way or another too. It would explain so many things but at the same time it also makes me very sad that it wasnt picked up before now. My daughter is an average achiever but has to work 110% to gain an average grade, but she has stuck at it and is awaiting her GCSE results in August. She wants to go on to study A levels at college. Not sure if any of you are on facebook but there is a group called "different for girls". Its been set up for girls/women with Aspergers and ASD as it was recognised that there wasnt much support aimed at girls.

 

My daughter also has high anxiety levels in social situations. How she has managed I sometimes wonder. She always used to find it very hard to make friends as she never knew what to say or how to approach them and always thought other children wouldnt like her. When we were on holiday my NT son would make loads of friends within a few hours, but my daughter never seemed to make any - I know why now!

[Lyndalou]

I was hoping to go to the NAS conference in Birmingham in October which is all about new research into females but it is prohibitively expensive!! The (day) conference is over £200 in itself not counting flights and a hotel... Why so pricey??

[trekster]

I was hoping to go to the NAS conference in Birmingham in October which is all about new research into females but it is prohibitively expensive!! The (day) conference is over £200 in itself not counting flights and a hotel... Why so pricey??

 

parents/carers/individuals on low income £75 + VAT it is worth it if you can attend.

http://www.autism.org.uk/news-and-events/nas-conferences/upcoming-conferences/women-and-girls-on-the-autism-spectrum.aspx

[Lyndalou]

Thanks Trekster

 

I had a look at the link again but I can't see where it says that rate for parents! Looks like I'd now be £225 + VAT and even if I were to become an NAS member, with that and the £150 + VAT I'd still be over £200!!

 

Going by train is nonsensical - 3 changes and costs almost as much as the ridiculous airfare Aberdeen to Birmingham costs - I could fly abroad for the price...and the bus is a total non-starter!

 

:( and I thought I might be able to bend some influential person's lugholes too.... :(

 

Hope you enjoy it!

 

Lynda

[trekster]

Click on the brochure from the link to the website then go onto the page of costs.

The lowest amount is for parents/carers/individuals on a low income.

 

I'm pleased you brought this up;

http://www.autism.org.uk/news-and-events/nas-conferences/upcoming-conferences/unable-to-attend.aspx

...where you can purchase materials for conferences you were unable to attend :-)

 

i think there is a support group in Aberdeen and a social group for spectrummy adults up there.

http://www.autism.org.uk/our-services/find-nas-services-in-your-area/local-branches/branches-in-scotland.aspx

[Special_talent123]

Did you know if you can not attend the conferences u can request for documents. I have just asked NAS for some documents to be sent to me i think there free i will double check.

[Lyndalou]

Thanks Trekster and Special

 

Our family has an income which would not fall under the category of 'low income' so I'm afraid I couldn't get the lower delegate rate .

 

I will go ahead and ask for the documents after the conference takes place - disappointing but hopefully helpful. I think the full price is extortionate and does not take into account delegates from outside the North of England

 

I've been running the independent support group for adults in the area but I've decided this week to give up doing this because it's causing a lot of stress for me. There is another small group for adults along with their parents which is more established and has NAS input. Otherwise, I am aware of nothing else for adults in the area - it's like a big black hole and the reason why I started the support group in the first place! Even the help for parents of children is disjointed but there is help available in various forms and with the introduction of a 'One Stop Shop' for information on where to get support, hopefully this will become a lot more 'joined up' in the area.

 

Lynda

[trekster]

Lynda well done for all the hard work you have been putting into the group in your area.

 

I have some idea how you feel. i run social groups in Bath for adults on the spectrum (including NVLD because they have similiar problems) which is now 1 year old post funding cut. i also run with help 2 other groups in Bristol (since 2011) and help out at a 3rd (since 1999). i have been doing this as an ASDer and peer advocate to the other attendees.

 

http://apps.facebook.com/theguardian/society/2012/jul/13/girls-autism-sex-bias-children

An article (also on the guardian newspaper) about lack of diagnosis for autistic women and girls.

[Special_talent123]

the documents are £30 each Lynda

[Lyndalou]

Trekster

 

You must have a lot of stamina and dedication to do what you do. I seem to have run out of those things for now unfortunately. I read the article and it's very good.

 

Smiley

 

Thanks for the information - think I'll be buying a few documents...

 

[trekster]

Cheers, it is a 7 hour shift for the bath group. if i lived nearer then i would split the groups up into cafe, cinema and pub, but at the moment they are run back to back.

[Special_talent123]

I spoken to them and I think there £30 for the documents

[Lyndalou]

Thanks Special Talent,

 

I'll be contacting them shortly!

 

Lynda

[Special_talent123]

i will give u there email Conference.andEvents@nas.org.uk