Newly diagnosed at 14

[emmasmum]

We have just received confirmation that my daughter has Aspergers. She is 14.

 

I know about how hard it is to detect but I have been raising concerns with school since she was in reception and I'm just so angry that it's taken this long to get her seen and diagnosed. For too long I was led to believe it was all in my head.

 

Now she's heading for GCSEs at C and D grade, when I know from cognitive assessments done when she was younger that she has potential for so much more.

 

She needs to choose what she wants to do for work experience but is so anxious about talking to anyone she doesn't know I just don't know what she can do. I've also found out this week that her grades aren't high enough for her to stay on at sixth form in her current school so she'll have to transfer to the local college after GCSEs and I can't see her coping there.

 

The one good thing is that the Dr is going to refer her for CBT for her low self esteem.

 

SENCo at school says no point applying for a statement at this late age - would you agree?

 

Thanks

 

Carol

[Sally44]

My son is younger, age 8. But again it took years to get a dx and a Statement.

 

Statements go to around age 19 I think. That covers the next 5 years. If your daughter wanted to go to college it would set out what supports she needed.

 

I'm sure other parents with similar age children will post.

 

Yes it is unforgiveable that your concerns have been ignored for so long. There is a post I think in this forum that gives a link to the 'Autism Exemplar'. This gives an example of how a child should be detected, picked up and their needs met and the timescales for doing that. It is worth reading just for the laugh.

 

I actually sent a letter to the Department that published it, to ask for their explanation as to why that did not happen. It bared absolutely no resemblance to my experience.

[Kathryn]

Hi Emmasmum, welcome to the forum.

 

My daughter was diagnosed at 15 so I sympathise with the situation you're in.

 

I was told the same as you - that there was no point in going for a statement in view of her age. I ignored that and requested a statutory assessment when she was 15 and a half and in year 11. After a refusal and an appeal the process was started just before her 16th birthday. At the end of that, the statement was turned down after much deliberate stalling on the part of the LA and we withdrew from the process as she would have been over 17 by the time any provision was in place - too old for the school we wanted her to go to.

 

So for us 15 was too late, but there are people on this forum who've been successful, so don't despair. You have to decide whether it's right in your situation. It isn't easy and you'll meet a lot of opposition, so you have to be clear about what you want to get at the end, and realistic about what a statement can achieve for your daughter. Is she year 9 or 10? If the school is providing all it can, and if there is clear evidence that with greater support she could achieve more and be less anxious, it's possibly worth a try. To succeed in even getting an assessment you will need to provide strong professional evidence of her difficulties and to show that the school has continually failed to meet her needs despite putting in all the support it can. Bear in mind that the whole process takes 26 weeks minimum, and that's without any appeals to further delay things.

 

You may have particular reasons for rejecting the FE college, but don't write it off without investigating what they can do. My daughter has been happier and better supported at college than she ever was at school and she has thrived in a more adult environment. She left school without any GCSE's and is now on an Access course and in the process of applying to university.

 

So all is not gloom and doom - there are ways over and around the hurdles that the education system puts in the way!

 

K x

[Mumble]

Hi and welcome to the forum

 

I can understand a little bit of your/your daughter's situation. I wasn't dx'ed until I was an adult, but there had always been questions asked about my development and it was around the age of 13/14 that these really intensified when it became obvious how much my peers were growing up and I just wasn't - they became teenagers and I guess I never made that transition.

 

I was predicted a scattering of D/E grade GCSEs if I was lucky. I actually passed (scraped ) all of them with A - C grades through sheer determination that I wasn't going to let them tell me what I couldn't do!! Also, I had the issue of not being allowed to stay on if I only get my predicted grade and there is no way I would have coped at the local college because I was at quite a small, strict secondary school and the college was massive. Things that helped me were I was allowed to reduce my subjects and drop extras that didn't count towards examinations and spend the quiet time in the library. I also had one teacher who really looked out for me and having someone I could talk to helped. Even if you're not going for a statement, it might be useful talking to the school about what they can implement to make your daughter's time easier? Does your daughter identify specific issues that are difficult - for instance I found break-times really hard because I was very vulnerable to bullying from other pupils - maybe you could discuss issues with her and the school and think about solutions?

 

The other thing from your post - work experience - I remember this coming up at school and I simply couldn't cope with the idea of arranging or doing it and the changes entailed when I was putting all my energies into just coping on a day to day basis. In the end, I didn't actually do it because I never organised anything and the school I think were a little fed up () - they somehow managed to work round me later not having a report on my experience, can't remember how - but the relief of not having to do it reduced my anxieties enough that I could refocus on my school work which up to that moment I couldn't because I was so anxious about this possible change. I'm the same now (I'm at uni), and allowances have to be made - so for instance I don't go to all the same external seminars as other students because coping with the transport and new place/people is too much but instead focus on my work - that's not just getting out of stuff but finding what an individual can cope with, and I still build up skills with internal seminars which I will eventually be able to apply externally. I'd see if she really has to do work experience and what other options there are, making it clear to her that if she doesn't, this isn't failure, it's working within her limitations for now.

 

This is going to be a confusing time for her, however much this dx was expected, and she's possibly going through thoughts/emotions that she may find it difficult to understand, so I think anything that reduces pressures on her for the time being would be beneficial.

 

[oxgirl]

Hi Carol, sorry to hear about your long struggle to get a dx, that must be extremely frustrating for you. Re. the statement, my lad is 16 and I was told by the school that if he stays on into the sixth form then the statement will continue, but if he leaves to go to college then the statement ends and the college then has to go through another process to gain funding. Not sure how that impacts on your situation, it would depend on whether your DD was intending to stay on or not maybe. On work experience, does she have any special interests that she could explore? My son did his WE last month, he is obsessed with fish and aquatics and so we arranged for him to do it at our local aquatic centre, he was in heaven! They were very flexible and we started off him just doing a couple of hours and built up the time throughout the week.

 

Good luck with stuff.

 

~ Mel ~

Edited December 4, 2009 by oxgirl

[smiley1590]

i was officially diagnosed at aged 14 same as your daughter i had CBT for depression negative thinking low self -esteem i have been told because of how our thoughts prcesses work in AS tend to automatically aim anyway towards negative thinking especially about ourselves doesn't work as well as other therapies i had it and didn't REALLY do anything or touch me whatsoever i'm not trying to put you off from going into this terapy just saying from my personal experience /situation!!! but then again hard to work on double low slef esteem when years od believing 'it's your fault' you're to blame you're naughty stupid lazy such like all negative labels attached to does wear and drag you down and start to really get hooked to them comments made sucked in so that eats away at you inside on top of this wondeing why you why did this happen to me what did i do to wrong maybe if i done somthing different better maybe just maybe i wouldn't have to go through this and feel this way ..... guilt triipping and self blame and doubt soo all that adds up to low self esteem bit within you fighting to thrive on years it's been there and we believed it OK it good ....... i know how it is i been there!

 

GOOD LUCK

THINKING OF YOU

TAKE CARE

 

XKLX

[smiley1590]

i really struggled and found my GCSE's so hard and difficult stage within my senior school years it made my MH problems - depression and anxiety play up so much more i had panic attacks , i was self harming and suicidal too i was at boiling point crisis emergency i pushed myself alot to be 'AS perfect eyes' i didn't want to 'let anyone down' i felt like a failure and more of AS then ever before felt like being judged for my AS brain so frustrating and confusing on same level i felt so many emotions /feelings all mixed up! i so angry hurt i had to sit in seperate room in the end to do my exams as pressure getting to me too much so much worry stress built up within me i could have broke! i kept thinking don't know how i going to manage revising colour coded mind maps help me rememebr facts and booklets on different subjects it's was a nightmare

 

i think there needs to be other systems put in place for 'mainstream ASes ' out there different framework structure less everything we feel need to compare and compete even more so when put against this push us to our volcano well and truly so scary i 'just passed' spent 3 years at college studing child care now working part time ! i nearly had to drop out my GCSE'S though that would just added to my already long 'AS Failure list' i had in my mind so far how would that helped my self esteem MH probs depression ...... stupid government i know they statutory requirements for 'everyone' out there but have to have somewhere in that 'expecion to the ruling' and that's where government going wrong in everything they do for society why can they see that .... they don't know AS reality etc how it is .... grrr. mumble over ..... SORRY ABOUT THAT.....

 

XKX

[smiley1590]

if your daughter is anxious i would get NAS involved they do their own work practice and training courses etc i would ring or email them find out further they maybe able to support your daughter through this temporary transition stage' of work experience i was just the same as her i did mine at a local nursery unit and loved it once settled and got to know people and environment especially adapting to unknown routine is very challenging for someone like ourselves feel like your 'climbing a moutain' though no matter how much support and reassurance your recieve i was certainly a'a learning curve' and taught me alot of things showed doing something like this may raise her self-esteem each day slowly which help her in long term though short term cause her worry and stress it's like riding out a fiest storm' i would also speak to NAS for practical advice on late statementing as this may give her more one to one support she requires and state her individaul needs more in black and white in paperwork for everyone to see and look back on and review progress achievement help self-esteem and also maybe improvements and adjustments which long term if targets met becomes goals or smaller goals this again help self esteem! it help see how the 'world of work ' actually practices and is about so isn't a'major shock to the system' so comes gentler than starting at the beginning! which involves more stress worry anxiety etc

 

XKX

[smiley1590]

that's why if you CAN get a statement in place and working in place for college starts this make process easier for your daughter as statement carries over to college and so does the support and needs stated on there so....... hope this information helps as mine did ! i had to give my college copy from school states what level of support and why it there basically!

[smiley1590]

that's why if you CAN get a statement in place and working in place for college starts this make process easier for your daughter as statement carries over to college and so does the support and needs stated on there so....... hope this information helps as mine did ! i had to give my college copy from school states what level of support and why it there basically!

[emmasmum]

Thanks everyone for your helpful and encouraging replies.

 

I'd always imagined my daughter would stay on at the school for sixth form as it's a more nurturing environment than the college, which treats them as adults and gives them more autonomy than I think my daughter will cope with. However, if she achieves her predicted grades she won't be eligible to stay on there. Unfortunately, she lacks the determination to succeed that some of you have and is not at all competitive. Even in Art, which she loves, she is aiming for a C - and I think this is down to her poor organisational skills - taking a long time to get organised and get strted.

 

I am wondering whether I am right in thinking that she is "too able" for a statement? That's certainly what I've been told in the past (she also has a hearing problem and a recently confirmed auditory processing disorder). I've been told that it doesn't matter that she's achieving less than her cognitive results suggest she should - if she's not failing badly then that's OK.

 

Anyway, thanks again,

Carol

[justine1]

Thanks everyone for your helpful and encouraging replies.

 

I'd always imagined my daughter would stay on at the school for sixth form as it's a more nurturing environment than the college, which treats them as adults and gives them more autonomy than I think my daughter will cope with. However, if she achieves her predicted grades she won't be eligible to stay on there. Unfortunately, she lacks the determination to succeed that some of you have and is not at all competitive. Even in Art, which she loves, she is aiming for a C - and I think this is down to her poor organisational skills - taking a long time to get organised and get strted.

 

I am wondering whether I am right in thinking that she is "too able" for a statement? That's certainly what I've been told in the past (she also has a hearing problem and a recently confirmed auditory processing disorder). I've been told that it doesn't matter that she's achieving less than her cognitive results suggest she should - if she's not failing badly then that's OK.

 

Anyway, thanks again,

Carol

Hi from what the advice I was given on here,it doesnt matter if she is seen as "able" its all about kids reaching their full potential.My NT son is nine and is three years above his peers,at school he is given more challenging work because he finds the "average" stuff to easy and boring,he even helps "teach" other pupils,though this is different in that he doesnt need a statement but the school know his potential so help him to reach it.My As son is six and on level 2 for all his subjects so he is also intelligent but he probably could do even better and he has major social problems so I am also in the process of applying for a statement.I never did well at school,if I got grade C for GCSE subjects I would be happy because it would gain entry to Uni even if its just to do access courses and then move up,she is young.I am studying furthur 10 yrs after leaving school and have gained a uni place for my chosen course.I think it is worth trying for a statement anyway they could refuse but you could just appeal it if you want.Is there no way you can get her extra support out of school even for just one hour a week on the subject she finds most difficult,there are many retired teachers etc that tutor for GCSE?Good luck.

[trekster]

Hello

 

i can understand your frustration i was diagnosed age 16 post exams. i passed them mainly on adrenaline since i slept every other night.

i would say try and get a statement, also try for DLA and other disability benefits.

 

What makes you think college isn't for her? i wasn't supported at my college despite being very able but eventually after 7 years

passed my A levels. It has taken me nearly another 7 years to pass my degree but ive made it!

 

Alexis

[trekster]

(snip)

 

You may have particular reasons for rejecting the FE college, but don't write it off without investigating what they can do. My daughter has been happier and better supported at college than she ever was at school and she has thrived in a more adult environment. She left school without any GCSE's and is now on an Access course and in the process of applying to university.

 

So all is not gloom and doom - there are ways over and around the hurdles that the education system puts in the way!

 

K x

 

Well done to your daughter for her progress.

 

[shaz71]

i was officially diagnosed at aged 14 same as your daughter i had CBT for depression negative thinking low self -esteem i have been told because of how our thoughts prcesses work in AS tend to automatically aim anyway towards negative thinking especially about ourselves doesn't work as well as other therapies i had it and didn't REALLY do anything or touch me whatsoever i'm not trying to put you off from going into this terapy just saying from my personal experience /situation!!! but then again hard to work on double low slef esteem when years od believing 'it's your fault' you're to blame you're naughty stupid lazy such like all negative labels attached to does wear and drag you down and start to really get hooked to them comments made sucked in so that eats away at you inside on top of this wondeing why you why did this happen to me what did i do to wrong maybe if i done somthing different better maybe just maybe i wouldn't have to go through this and feel this way ..... guilt triipping and self blame and doubt soo all that adds up to low self esteem bit within you fighting to thrive on years it's been there and we believed it OK it good ....... i know how it is i been there!

 

GOOD LUCK

THINKING OF YOU

TAKE CARE

 

XKLX

 

Hi smiley i feel for you especially when you point out the negatives, i have just been on a parenting course and it as made a difference on my daughters self confidence here and school as i have been positive praising, she also i think is on the spectrum i could go through the essay but won't, but probably like a lot of parents i got into the negative cycle always don't do this, no, don't be so daft, silly etc not because i didn't care but this is the way i was brought up and my self confidence was low also i am not saying it was all down to my mum as she was a single parent as i do think other issues were going on like never got picked for pe teams until the last as my ball skills weren't good, running as wasn't fast etc, in fact only thing i was good at was reading and maths but i regret not doing it to my older children as they are also very depressive children in fact i remember Rhys my eldest being depressed in primary and if i would have taken him to a psychologist when he was 5 he would have definately gotten a autistic diagnosis as he wasn't social, in fact most way through primary he never played out, he did have a couple of friends which funnily enough one as a diagnosis of autism and another social anxiety???? He now smokes weed which i don't like and makes him very paranoid even further and ocd but he says he can't sleep without it, he is 18yrs old, he has anger issues as well. He was clumsy in his body and gait and wasn't ladish but is now. So i do think positive praise works confidence which a lot of aspergers tend to be bad at. When i went to the group i asked about Melissa anxiety as they said to play it down, which i do, but i said how bad she was and that is was a bad issue, i then said i know how she feels as i was really bad, but she said well look at you now and i said yes but it as taken me 38yrs to get to this point and i don't think i was as severe as Melissa not at that age i remember being like it at 13 and upwards and getting tummy aches a lot with the stress and axiety of it all. The woman said it does tend to run in families anxiety. Which it as done in this case and i do feel for my children as it is awful, i am better now and have more coping mechanisms although did have a depressive episode and anxiety attacks about a year and half ago due to stress at work lots of changes, me and the childrens dad splitting up another change ended up giving up job to concentrate on the children and myself as i was counting everything which isn't good, colour coordinating pegs yikes, i was so stressed, clicking fingers, making silly noises, which i haven't been that stressed for a long time probably was a break down. A lot better now seem to be more organized the children are picking up on it and seem to be more better themselves as children pick up on stress levels and play up more which is when i found i couldn't cope with Melissa the one with learning difficulties which probably doesn't help as she is behind in expressive and receptive language and immature speech. Sorry off again lol. Sharon x

 

[harmony]

Hi

Just to say, My daughter is almost 14, was diagnosed with AS at 11/12 Although had an earlier diagnosis of dyspraxia. I do understand what you are going through. She was considerd too bright at certain things to be statemented??? Yet now she is behind and getting c/d grades. We have put her in to a small private school ( paying for it is a struggle)

It has helped to a certain degree as class sizes are small, and she can't "hide"

I find this age with girls is so hard, their AS symptoms seem to be magnified, and emotions can run high.

It is hard to know what our children will do as they get older in this exam/test obsesed culture we live in, but AS children have been through a lot, and are quite oftern very resourceful. Maybe your daughter will not go on to A'levels, but maybe there is something greater for her around the corner.

I really hope you find a solution, if you ever want a sympathetic here just post.

love

Harmony

[trekster]

Hi

Just to say, My daughter is almost 14, was diagnosed with AS at 11/12 Although had an earlier diagnosis of dyspraxia. I do understand what you are going through. She was considerd too bright at certain things to be statemented??? Yet now she is behind and getting c/d grades. We have put her in to a small private school ( paying for it is a struggle)

It has helped to a certain degree as class sizes are small, and she can't "hide"

I find this age with girls is so hard, their AS symptoms seem to be magnified, and emotions can run high.

It is hard to know what our children will do as they get older in this exam/test obsesed culture we live in, but AS children have been through a lot, and are quite oftern very resourceful. Maybe your daughter will not go on to A'levels, but maybe there is something greater for her around the corner.

I really hope you find a solution, if you ever want a sympathetic here just post.

love

Harmony

 

Also our behaviour is often dismissed as PMT or some other female condition

[cmuir]

HI

 

I think you should go for a statement. Senco are perhaps saying otherwise because it's easier for them. Even if she only gets the benefit over the next two years, it would still be worthwhile. Fact is, you never know what's around the corner - my son can go through spells of doing really well, but sadly, it doesn't last (always peaks and troughs).

 

C.