Any advice appreciated

Hi all. I need some advice about my 11 year old daughter. 

Inmy family, we have always noticed she is quirky but of late, this quirkiness is becoming more apparent and worrying. She suffered from tics a year ago, so much so I thought she may have Tourette's. This waxed and waned for a while and now has virtually gone.

Since she was small, she won't wear buttons, I've recently discovered its because people will see her wearing them, not she doesn't like them. She also seems to have echolalia (repeating phrases from t.v. Or people) 

She comes home from school and sometimes just shouts out random noise as if she's been holding it in. She has no real self awareness, will get in your face, not angrily. Doesn't get jokes or sarcasm. No real bond with family besides me. She can be in her own little world, humming grimacing general noise making. Gets very excited and animated over food. Always wanting to eat and remembers people by the food they ate, eg. Oh, I remember her, she had a jam sandwich. If anyone eating loudly she shouts and leaves the room. There's more but I won't go on.

She does well in school and they have no concerns tho whenever they go out or on a bus,  she always seems to be the one walking on her own, while the others are paired up (not through her choice). also, the older she gets the more her immaturity is showing, can't say she has changed since at least 8 years old

Could she have ASD. Any advice would be great :) 

  • Hi

    sorry for the late reply i havent managed to get on here for a while, I hope your daughters doing ok, thankyou for your luvly comments :-) I think im doing ok i actually feel happier now I'm diagnosed which i think helps me cope :-)
    I will keep my fingers crossed for your daughter that school goes ok
    you're very welcome anytime  xx

  • Again thanks, no problem about long reply, I'm like a sponge at the moment trying to find out everything I can.  Yes, I think my daughter has masked any symptoms in school and although it will probably be hard work maybe she can do enough in comp to fit in. On the plus side, it makes me feel a lot better reading your two replies as you seem like a well adjustEd bright young woman who's coping with life really well. You must be proud of yourself! And it's a relief to read that school was ok for you, fingers crossed it will be like that for my girl.

    Ive been to the dr. And she said she would pass on my girls information. I wrote a list of her traits as I saw them so she was going to pass that on with her notes I presume. Waiting to hear back.

    Ill update here if/when I get any news. Thanks aqua x

  • Your welcome Im glad to help if I can, I think you're doing the right thing if you try for an assesment at least then you would know either way.

    For me I'd always been a bit different change and things would get me so worked up id be ill but the doctors said it was nothing even though my mum kept trying. Then I was diagnosed with depression wen i was 19 so we put my symptoms down to that but the end of last year i was declared no longer depressed and my Mum then decided if it wasnt depression it had to be something else my sister had been to a meeting about autism and spent the whole time saying Oh my god thats my sister. So we looked into it and went to the doctors the first one said no and wouldnt refer me the second doctor did refer me but said it wasnt Aspergers just social anxiety. They were both wrong. It only took 3 months from going to the gp to getting diagnosed. 

    For me comprehensive school was ok I'd had a really hard time at primary school was bullied by pupils and teachers and it was very very strict, so when i got to comp it was totally different i had a group of friends all kind of the misfit girls, I didnt really go out much outside of school but it was nice to have friends in school.
    I learned that a lot of people with asperger's learn how to sort of act like a neuro typical person which i think I did when I was at comp, but then i was just me at home it sounds like your daughter may be doing the same thing.

    I understand that, its a big change, if you manage to get a diagnosis she should get extra support, to help her cope.
    I think having you to help her through it will help as well.

    I'm still really learning myself but
    for diagnosis I printed off the list of symptoms on the NAS website then wrote examples of how i met the ones i did meet,it helps so you dont forget anything when at the gp or psychologist and I took my pschologist a copy he was thrilled and kept it and read it.
    And the other thing, remember you know her better than anybody, so if you get a no like i did dont give in till you have got the answers you both need.

    Sorry for the long reply
    please keep us informed what happens
    and Good luck Smile xx

  • Thanks for your reply aqua. The more people that agree, the more determined it makes me. When I look at my girl sometimes I think, am I overreactting? But then there's always that what if it is something more. 

    What made you/your parents look for a diagnosis for you? Did it take long? How did comprehensive school go for you? That's the thing I'm most worried about. Her getting either bullied or her not being able to cope. Any tips on how to handle things would be greatly appreciated x

  • Hi Justfour

    I definitely think you're doing the right thing it does sound like asergers,
    Im 23 and have just been diagnosed this year, the doctors didnt believe my mum and i was quiet and withdrawn at school so no one took any notice, I always felt a bit different but not in a bad way till i got into my teens, now im diagnosed im actually proud of who i am and being an Aspie.
    Good Luck with the GP and the Diagnosis

  • thanks tweetypie, wow, thats a very long time for a diagnosis. you dont say how severe your sons aspergers is but i think if i had taken my girl to docs at say 8, they wouldnt of picked up much as she seems quite controlled etc. in company that isnt at home. maybe they would of brushed me off and not taken my concerns seriously.

    today i have made a couple of videos of her having one of her moments....being very silly, she nearly 11. am thinking if i can get some evidence of her ways maybe they will listen. if i took her to the doctors she would act perfectly normally.

    good luck with you son, just out of curiosity, does he have an overbite? i saw a documentary on tourettes and a link between that and dental problems. i.e. the overbite. my daughter had that and now its corrected they have virtually gone! she was again quite mildly affected bar the odd time when she would have a flare up.

    best wishes x

  • Hi Justfour ,

    certainly does sound like aspergers , took us years to get son dagnosed , new something wrong about age two .He was finally diagnosed at twelve . He is now fifteen and started having tics about one year ago and coughs or clears his throat at the same time . His therapist and Dr have mentioned tourettes or says it could be down to his anxiety. They have mentioned medication for the tics but already  takes meds for depression and another to calm him down so want to leave it for now . keep fighting for a diagnosis because it can be a long hard road .Good luck .

  • No worries.

    When I was at school Asperger's was barely understood within Psychology let alone at school, so it's no surprise that the signs were missed.

    Things are improving, but understanding is patchy, and when you consider the fact that the signs can be very subtle, and we, at the higher-functioning end of the autistic spectrum, can do a very good job of masking our difficulties, it's still no surprise that some still slip through the net.

    Hopefully, and I think it is the case that, with the growing awareness of the full range of autistic spectrum disorders, detection will get better, and the numbers left undiagnosed for very long will continue to decline.

  • Thanks scorpion, that's what I was-thinking, (waiting for diagnosis ). It's also good to read about so many people being diagnosed later in life. I wasthinking, if she has aspergers, surely I or school would of known by now, again, all makes me feel better about the path I'm taking. 

  • Justfour said:
    Scorpion, what would your advice be from someone who's lived through diagnoses? Should I wait till I have to tell her (if the specialist needs to see her) or just have a chat now? Really not sure what to do for the best, thanks for your feedback.

    Well, I wasn't diagnosed until just over two years ago - and I'm nearly 40 - so my situation is a little different. However, if I were in your position, I wouldn't tell her until after a diagnosis, but then tell her sooner rather than later. Possibly even ask the diagnostician to tell her.

  • Thanks hope! Everyone's comments and advice has really helped. Thanks everyone :)

  • I felt different from about the age of 10, but the teachers and parents had concerns since I was three. I did not start feeling negative about my differences, or began analysing them critically, until I was 13 years old. I was a very happy child, blithely un-self-aware, content with being me.

    As a teenager, my parents suggested I was a bit autistic, and I was adament that I there was nothing 'wrong' with me, despite not being able to maintain friendships, having extreme interests and obsessions etc.

    I was reluctant about accepting I had difficulties, until it all came to a head when I had a massive tantrum - age 19 - when my parents were talking during a TV programme I was trying to watch. They told me that I had to see psychological help or my Kate Winslet DVDs would be confiscated - I had an extreme obsession with the actress. I had CBT therapy, and this led to me getting a referral for an autism assessment and subsequent diagnosis. Prior to the assessment, during it, and after diagnosis, I was really interested in all aspects of autism as I now wanted to understand myself.

     

  • Thanks Sharon, my daughter starts secondary school IN September and I'm quite concerned she will have some problems, that's why I'm hoping a diagnosis will be inplace soon. What sort of problems did your son encounter? Was it more socially or just the big differences between junior and secondary? 

    All the best for the future x

    Scorpion, what would your advice be from someone who's lived through diagnoses? Should I wait till I have to tell her (if the specialist needs to see her) or just have a chat now? Really not sure what to do for the best, thanks for your feedback.

    Emma

  • Justfour said:
    as a person with aspergers, did you know you were 'different'?

    I also have Asperger's, and I knew I was different right from quite an early age - in fact my first memory of being aware of that difference was when I went to Middle School - first day, first break time, and it wasn't so much that I thought I was odd (that came later), but rather I went out into the playground and everyone was rushing around, making lots of noise, and I distinctly remember thinking "I don't understand, or like, this! These kids are strange!" and then sitting under the covered area near the doors, all break, by myself, listening to music on a Walkman that one of the older boys lent me.

  • Hi Justfour

    My 12 yr old son has just recently been diagnosed with ASD.

    You're doing the right thing. Definitely get your daughter assessed and you're right not to take the 'she's doing fine in school...' - often ASD children will appear to be coping at school, but it is obvious from the way that they act out of school that it must be a huge struggle for them especially the social side (my son was exactly the same as your daughter when it came to lining up in pairs on a trip etc.)

    My son got through primary school and did well in his SATs and despite the fact that home life with him was hard work and 'not normal', no teachers ever mentioned any concerns so we just got on with things and battled on. It was only when it came to starting secondary school that things didn't work out - so far we have tried 2 schools and he managed half a term at each, he now hasn't been to school since Feb half term - and it was the head of the first school we tried that mentioned ASD to me which then led us to getting him assessed.

    I wish you all the best. I hope you don't have to wait too long for the referral.

    Sharon

  • thanks both for you comments, its really useful to get other peoples opinions as i dont know anyone with a child with ASD. I have been to the gp with a list of all her traits and  she has passed them on. I think im looking for reassurance that im right to go for a refferal and that if im told, oh, shes doing fine in school no need to worry, i will make sure i push for her to get any help she may need.

    The only other problem i face is actually telling her! obviously i will wait to speak to a specialist first but not sure how to approach it. she seems oblivious to her odd ways.

    If you read this Hope, as a person with aspergers, did you know you were 'different'? how did you cope with getting a diagnosis? Im really unsure how she will react. again, any advice from anyone would be great. x

  • Hello Justfour,

    It sounds like aspergers, but you will need to get an assessment done by an expert in ASC.

    I can relate to the behaviours described, and I have aspergers.

    ''Shouts out random noise'': I do this a lot at home, it helps me de-stress, and I talk to myself, too.

    I was obsessed by food all through my childhood - a common AS obsession maybe?. I constantly talked about food and memorised what people ate!

  • Hi Justfour,

    The symptoms you describe certainly sound like those often seen in individuals on the spectrum.

    I'd recommend you speak to your family GP and get your daughter referred to a psychologist trained in diagnosing autistic spectrum disorders.

    Note, however, I am no expert, and there could well be other conditions for which the behaviours are the symptoms.