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nelladonna

Hello from Mum of 16 year old girl recently diagnosed with Aspergers/ASD

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I realised about two years ago that my daughter had an ASD when I went to a weekend workshop run by the School of Infant Mental Health on Early Signs of Autism. All of the differences I had experienced during the early years of her life suddenly fell into place. I was in a confused state of shock and relief that weekend. It took a whole year more to get a diagnosis, aged 15, through the NHS. (ADOS performed by local paediatricians.)

 

She has just been to her Year 11 Prom (an experience that must have been like a long drawn-out scream for her...) and all through school, she has had precious little understanding or support. I could write a book about the baffling, humiliating and isolating experience of bringing her up, undiagnosed.

 

There have been the Women and Girls on the Autistic Spectrum conferences, but what is happening about assessment and, in particular, diagnosis, with girls? If anyone has any information, I'd be pleased to hear about it. Are schools being educated about it? Autism is referred to as "the hidden disability" but in girls, at least in its quiet, withdrawn mode, it is not even known to exist.

 

I know that the Lamb Report made recomendations about autism, but how does this relate to getting a diagnosis through school? Will it be any easier? I erroneously assumed that school would be the experts in spotting a condition like this. I don't believe I am alone. As a Mum, you feel rather intimidated by school. They were constantly saying things like "she's very shy" and "she needs to speak out more in class" or "she needs to speed up in her work", but I knew instinctively they were missing the point. She was, in fact, completely lost and in despair and I was powerless to help as I didn't understand what was wrong.

 

I remember a day, when my daughter was quite young, when she asked "Mummy, why do you send me to school?" She answered her own question "Is it so I can learn?" and I gratefully agreed. But I now feel I have put her through some sort of torture. I have been there every day for her, listening to her feelings about it all, but if only I could have it all again, with a diagnosis, I would have known what I was dealing with and could have made sure she got the support at school she so very badly needed.

 

If a child is "high-functioning", if they are intelligent, if they are getting adequate marks in tests and exams, there is no support. The support is focussed on getting better SATS results and supporting those who are scraping along on the bottom academically. Whatever happened to the ambition for every child to reach their potential? How is it possible for an individual to go through nearly an entire school career and nobody to realise or do anything about their problem?

 

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Hello nelladonna (or whichever you prefer)!

 

It's so nice to hear from you on here.

 

I'm 29 and was diagnosed with Asperger's Syndrome (AS) at 7. This may sound like a nice and early diagnosis that enabled early intervention, but the massive problem for me and my family was that the condition was almost unheard of at the time. Throughout my school years, the support I received for my special needs was only minimal, so I'm no stranger to what your daughter's been through. I used to think that because of the way my special needs were often so disgracefully exploited at school, I faced a hefty life sentence. Nevertheless, I'm now managing to gradually brighten my days over time and gradually emerge (with some zigzagging and twirling) onto the right track. I therefore have high hopes for your daughter and her future. I adamantly believe that she has better opportunities for personal and social development than I had as a child and youth. If you consider the issue critical, it may be a good idea to write to your MP. This may be a good first step onto a campaign to get your views heard.

 

You can contact me about whatever you like, whenever you like and use whatever language you feel comfortable with.

 

Kind Regards

Gareth.

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Hello and welcome

 

i was diagnosed at your daughters age with the support of my gran. Now 18 years later im sharing a house with my friend with some home help which our family had to fight long and hard to get. i claim disability benefits because im unable to cook or recognise when im hungry. i went off gluten and dairy age 26 and wish i had done so earlier. i can now manage some dairy in my diet. i also managed to get my A levels and degree after many years of trying. College experiences have varied but i preferred Bristol support. i can get extra time in exams, a writer in class and a reader in exams. i can also get mentoring and study support at university. There is support out there and in 2 years time your daughter might be able to meet other aspergers/autistics like herself.

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... She answered her own question "Is it so I can learn?" ...

How is it possible for an individual to go through nearly an entire school career and nobody to realise or do anything about their problem?

 

The situation/knowledge at school might be better now. I only got my diagnosis at age 37, and that was a consequence of my son getting his dx at age 3, the year before.

So, no one put a label onto my odd behaviours during my (13) years at school.

Looking back, I think I was just lucky that the class was very disciplined and eager on learning, and I now think that what I learned mostly at school was interaction with peers (instead of parents etc.), while gains in knowledge were only a "bonus" (for that, I prefer to read books).

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i like your daughter was officially assessed and diagnosed in my early teens and i can really empathise totally with statements like how do schools go along and not know 'anything is wrong' for so long?! again like you when look back in school reports it says on several comments how seem to be in daydream like state 'in my own little world' and socialise more with adults than peers yet everything back then put down to 'general SEN' term and not looked no further as no actual term of HFA/AS really and get hidden missed as 'blend into background' which is scary thought/situation so many comments /statements /situation added together make clearer picture but can't help but feel 'missed out' on childhood robbed of it due to deeper investigation so know how you feel

 

my parents had pure battle on hands trying to get me officially assessed & diagnosed for Dyspraxia which was a struggle literally as thought my mum was 'over protective' which a classic situation parents are faced with i was bullied all time such miserable place to be school was found such difficult place to be felt unsafe/uncomfortable! feel lack of awareness is no excuse for not helping me progress forward

 

feel didn't have much of childhood to expand on even level felt like this has had long term effect on self -esteem crushed it used to get so frustrated i was seen as disruptive ,loud ,naughty bad child which years after are still left with aftermath effects trying to move on and build on foundations/structures which i have grown stage by stage! i feel like my school could have done more they judged stereotyped too much was put down on behaviour shown not explored i feel do i have 'natural' right to feel 'robbed' ,angry ,hurt ,bitter at school experiences especially with teachers!

 

i now work in nursery and work with pre-schoolers and within there we have few children being investigated for ASD and knowing the signs i would say highly likely /possible this is outcome in there own world non-verbal just sounds and no friends all adds up see it so clear now i am one of 'them' never thought would end up like that but it has hope to help others escape misery pain frustration/isolation i felt growing up wanting to be liked,understood ... 'saved' i suppose!

 

these days there is really no excuse for lack of awareness /understanding of ASD as 'out there' more so than ever was growing up when i was at school more open honest! and seen as 'spectrum' rather just one end -severe classic (kanners)

 

XKLX

Edited by smileyK

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