I believe my 12 year old daughter has Aspergers - she has many symptons and struggles with friendship. Will a formal diagnosis help?

My daughter started secondary school last September and feels happier and more confident because she stands out less, can hide away in the library and has had her first academic success in Science. I think that she is probably at the milder end of the spectrum and am concerned that by going for a diagnosis this will underline her difference, just when she seems to be making some progress. Sorry about my ignorance -this is all very new to me.

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  • Hello Elsie, I can only talk about my own experience with my son who is now 28 years of age and has AS. He sailed through primary and secondary school and although parents evenings at school were a nightmare for me (i.e him being disruptive in class, not doing his homework etc etc) he always came home with fantastic grades in all subjects. I knew nothing about AS, so whatever symptoms he had passed me by. Looking back now I realise he had all the signs i.e. he lined up toys as a kid, he didnt understand jokes, had an obsession with music and nothing else, and many other things. But life went on. He had friends, his eye contact was good. As you probably know, no 2 Aspies are the same. Time went by and by the time he reached the age of 20 he started having outbursts of anger when things didnt go his way. By the time he was 24 he would argue over nothing and the main problem being communication. He struggled with social situations. He found jobs and was good at whtever he did but never manage to stay long enough in any job, his time keeping was bad, his ritualistic ways of doing things got in the way etc .....He has verbal communication difficulties (not written). That's when I happened to start working in a centre that deals with behavioural problems with children of which Aspergers in one of the conditions treated there. I spoke to some of the professionals and my questions to them was "How come I never noticed anything?".... "Why has he become suddenly so abusive towards me?".... "Why does he have so many anger outbursts?????" .......I was then told that when they are kids they have no big responsibilities , things are done for them but as adults they have to face bigger things and of course MUM is not around anymore. they try and move away from home to live on their own and they find that managing life is not so easy. They become depressed, suffering from anxiety over nothing and that leads to bouts of depression and other problems. I believe that a diagnosis when they are young helps in the sense that they grow up knowing that they are different, they grow up accepting that they have the condition and of course with the diagnosis comes the other management strategies they learn to be able to cope with the condition and moreso for children like yours and mine who are quite mild as they will benefit a lot from the therapies as they learn to become self sufficient. My son missed all that. When I eventually told him he went into total denial and it took him 3 years to accept and even the simple thing of reading aout AS he wouldnt do.. We are now at a stage of having him diagnosed and you have no idea how difficult that is (at least in the area where I live)

    Of course this is my view as a mother of someone with AS. I could be wrong but it would be interesting to see some replies from genuine Aspies to let me know whether Im right or wrong in being in favour of a diagnosis at an early age. I would advise you also Elsie to read all you can about the condition as understanding your daughter from her point of view is also very important.

  • Thank you so much for replying - I am fairly certain my daughter has AS- and even in my being aware of this - as you point out - is helpful, as it answers so many questions, like why my otherwise intelligent and kind daughter is so socially unskilled, why she has been subject to bullying, prefers to spend time with older or younger children and obsesses about science and animals.

    You raise the issue of the difficulty of diagnosis - which is presumably even harder when the symptons are relatively mild. I think I will have some initial talks with the school etc.

    Thanks again.

  • Elsie, just one more thing. If you decide to go ahead with this, try and speak to the School Nurse or the School SENco as they see your child away from you i.e. in a different environment..... they might notice things that you havent noticed. Speak to the teacher as the teacher can probably provide another insight of how she behaves away from you. If the school staff (School Nurse or School SENco) agree there is something to be checked then the SENco or school nurse can make the referral; I know this because as I said above I work for a Specialist Doctor in AS and other conditions under the spectrum. Talk to the GP who can probably do a preliminary test....just dont let her grow up feeling that she is something that she is not. AS is not a sickness its just a difference and once understood by the family your daughter will have a wonderful life (by the way, Science is one subject AS people love ....:-) . All the best. x

  • I was always a little different, a little wierd but when I was young there was no such diagnosis as Aspergers. I have finally been diagnosed in my 60s. For me, it has explained so much about my life. What I am trying to say is that if your daughter has Aspergers and therefore has insight as to why she may be seen as a little different, this may be very useful to her in life. The important thing is that it is not seen as a negative. If she does start to struggle at school, you can support her, if she is bullied, you can look at ways of coping based on her condition. You would also be able to understand that if she becomes totally absorbed in a subject, this is nothing to be worried about as it could turn out to be a positive. I have had a successful career and have a family, but with more insight, I would probably have done some things differently. You and your daughter do not have to tell anyone about the diagnosis if you choose not to. As a bright young person she will be able to understand the facts and make her own decision but it will give her the information to make informed choices as she goes through life.

  • I don't think it's about the diagnosis, more the help you get. My son is 12 and just been diagnosed. He has had a terrible time of it, badly bullied etc. we put him in private school thinking we were taking him away from bullies, only for him to be bullied worse. The head teacher asked us to go in and he told us that he thought my son had aspergers so we, with the help from the school got him referred. He is now at a local school that has special. Needs attached to it. He is in main stream for his lessons but goes to the hi fab as its called at break and lunch times. He can't deal with crowds so is allowed to leave classes slightly early to get to his next class. This has worked out really well and he is a lot happier, there are other boys there his age with the same condition so he knows he is not alone. His support workers who are very well trained are helping him with the social side of things and for me it has been a await off my shoulders. What ever you decide, good luck. It is never easy watching your child struggle, she isn't alone with this, try speaking to her, there are so many books available that are easy to understand. It isn't the end but the beginning and sometimes knowing what could be the problem helps. I am learning a lot about myself from my youngest who also has aspergers, so maybe l have too, good luck.

  • I have Aspergers myself & wasn't diagnosed until 19yrs old after I'd completed school. I sailed through primary school easily, I was one of the popular kids that many wanted to play with but my best friend was another girl with downs syndrome & we did everything together.

    My problems began at secondary school, I initially stuck with my friends from primary school & struggled when they started making new friends & I got left behind. I too would often sit alone in the library or in the corner of class & some of my classmates even joked with me about being 'the mouse' they wouldn't know was there except for the odd shuffle of my book. I often got into trouble with homework as I didn't understand why I had to do at home what I was doing in class, I also struggled at putting things to paper but had no problem explaining verbally. I sailed through GCSEs getting A-C Grades in all subjects with little effort so then struggled with A levels when my grades fell rapidly as I was expected to do more 'self study' & 'written coursework'. The turning point was the day I refused to go in as my teacher had told me (all be in a joking manner) 'Why are you turning up if you can't do your work, you're going to fail' which I took literally & just concluded she was right I had no hope of passing.

    As such getting a diagnosis may help but in the meantime just reassure her she is not 'strange' nor 'abnormal' & that doing things differently is ok.

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