The Ah-ha! moment... now, to evaluate or not?

Hi everyone,

I am here because of my 12 yr old daughter.  I recently had an 'A-Ha!' moment when I read up about how Aspergers can present itself differently in girls than in boys.  I am fairly certain that my daughter's traits are consistent with Aspergers. 

I work in a mainstream primary school with special needs children (some of them with ASD diagnoses and traits)  whose difficulties are pronounced enough that they require the extra support.  My daughter certainly does not have the same category of need, as she has managed to remain completely under the radar in the academic school setting.  However, at home there have been plenty of days that I've thought, 'Gee, that seems like something one of my ASD kids would do...'  but felt too close to the situation to be judging it objectively.   Until now I have never really considered going for an evaluation for ASD. 

My husband seems to think that the evaluation process would be nit-picking and cause more grief than it's worth for our quirky, introverted daughter, all to get a 'label'.  After all, aren't her meltdowns what teenage girls do from time to time?   I understand his point, given that there are children with more obvious need, and also that thus far we have managed her needs without any support, whatever the 'label' may be.  Occasionally I adapt some of the school-based strategies for home, and we are a patient, laid-back household so I think we've naturally diffused many sources of anxiety in her early years.  Her difficulties are, comparatively, 'invisible'.

However,  I am worried that now at Secondary school level, a gap is widening between what is expected of her and what she is able to manage due to her awkward social skills, poor time-management skills, and resulting anxiety/stress levels. She is quiet, never a behaviour problem (at school), but equally does not seek help at school.     She has always gotten high marks, particularly in English, languages, music, and art... but at every single parent-teacher conference I have attended over the years, the comments have had the same theme: that despite my DD's good vocab and ideas, she doesn't complete enough work in a given time, doesn't answer questions fully, and that socially she seems content as a virtual loner on the playground and at lunchtimes.

She has two friends she considers close, both of them are boys.  She has girl friends, but she rarely cares to invite them (or be invited) to do things together (and we are long past the age of parents arranging playdates!).  Therefore, most weekends and school holidays are spent in her room, or on the computer, immersed in her world of drawing comics and creating computer animations and fantasy costumes, and unless we create enough of a reason to go out of the house, she would be a hermit there.

Ever since she was a pre-schooler, we/teachers/friends/family have shrugged and explained away these discrepancies as being 'self-contained', 'an only child', 'imaginative beyond her years,  frustrated by her peers', etc   

 I should say, by way of history, that when she was 7, she developed a pronounced stammer and some group therapy gave her strategies to use which helped her manage it. However it made Year 3 a socially difficult year for a girl who was already socially awkward. The stammer is virtually gone now, though it does re-appear when she is anxious, or when she is excited to express something.   She also goes through phases of head and neck tics - jaw movements, coughs/throat clearing, neck stretches.  Then one day we notice she's not doing them at all, and weeks go by before she starts again.

We have good, quite 'normal' days when I think I'm making a big deal of nothing.  Then, something happens that makes me worry for her future...   what would you say are the biggest benefits to getting an evaluation / diagnosis?  Is it worth taking the plunge?

Thanks,

Gimmeabreak

  • Puffin, I understand the worry about a label following your child through life.  My step-daughter is a 'highly compensated' (high-functioning) dyslexic, who was only diagnosed privately as the school and its consulting agencies really could not see that her spelling difficulties merited the dyslexia label.  Her mother pushed for a diagnosis, and found a psychologist who probed deeply enough to label her dyslexic.  She was entitled to extra time on tests, but still got the same spelling support she had been getting without the diagnosis.  In secondary school, she rarely took advantage of the extra time, as she never needed it and was already top of her class.  Now finishing up at uni, she does use the extra time on tests and uses software to help writing, but is worried how the label will affect her job prospects.

    That said, I think ASD is different.  Reading the stories about adults who have been wrongly diagnosed with other mental health conditions, rather than ASD, is alarming to me.  In those cases, the underlying difficulties won't be properly addressed.  It seems there are many adults who fight for the correct diagnosis in adulthood, and that seems a tougher fight than in childhood.

    As none of us knows what the future really holds, how society's demands and school demands will change, I think it's good to get the diagnosis if it's suspected.  The gap between your son and his peers may widen as he gets older, or if it remains an 'invisible' problem, then self-esteem and depression issues may arise.  Best to name it what it is so you, the professionals, and your son know what to deal with.

  • Thank you all very much for your comments - I really appreciate it, such a relief to be understood. :)

    Crystal12,  I will definitely read up on posts about secondary school.   I haven't had a frank chat with my daughter about her differences, I think I keep waiting for some event to act as an conversation opener,  but I think I will choose a relaxed moment to chat and see if she feels particularly different to her peers.  She is, on the whole, a reasonably fair-minded person and respects others' differences, so I am hoping she will accept that her differences can also be a strength.

    Daisygirl, thank you for sharing your experience, and the book recommendation - I will def. be picking that up.  I love the term 'Aspergirl'... it sounds like a hero.  I have read several articles by Attwood, but never the book so that will also be required reading!

    Puffin, it sounds like your son's school is doing well to manage his needs, and now you mention it I recall my daughter being put into a small support group for her transition from Year 6 (middle school) to Year 7 (secondary).  I wasn't told or asked, now I think about it, but I'm very glad her middle school picked her out as someone who could use a bit of support coming up to and during that big transition to secondary school.  It did ease a lot of her anxiety and answer a lot of questions by giving her a special tour and a forum to chat about her worries.   Perhaps your son will need the same thing, maybe even moving between Key Stages, or classes, depending how your school is set up. 

    I think a lot of higher functioning children can just manage to keep themselves together at school, but that must be so exhausting and stressful that when they get home and let their guard down,  everything they've bottled up during the day comes to the surface.  Again, I anticipate this happening more with my daughter.

    Your comments have given me the shove I needed - I will get in touch with the school's SENCo as well and see what she has to say, she should be able to alert the most relevant teachers to my concerns and start to gather any evidence we might be needing to go forward with an eval.

    Cheers!

    Gimme :)

  • Hi there, 

    My personal concern is that if in the future my son may applie for a job and his employers are told of his condition as it is on his medical records the same as a bad back may be noted, it could affect his future in ways i cannot imagine yet.  my son can hide his disabilities quite well to be seen to fit in.  which is something although he is only six he seems very aware of and strives to do.   i just feel i have to think carefully about giving him a label that will stay with him and may affect him in a negative way, were as his condition can almost go undetected to the untrained eye.  "the diagnosis helping him in so many ways" i am still not sure of, not for the few with aspergers  who are low needs and do not need one to one classroom assistance or other additional needs. 

  • hi - if any one of us is diagnosed with something which is never going to go away, then why would we object to it being on our medical records?  We shouldn't feel bad about being labelled with, say, back trouble, so why should we feel bad about being diagnosed as being on the spectrum, especially when that diagnosis can help in so many ways? 

  • Hi there,

    I am in the same dilema but my son is six,

    It is such a difficult decision.  i have read on many posts on the site that alot of the time the children are relieved almost to have a diagnosis and a reason to why they may feel different!  you seem to have created the perfect enviroment at home for her, so her possible autistic traits are contained.  My son shows very little sign of any problems at home his stress stems from school where he is very quiet , reserved , never asks for help avoids contact with teachers if at all possible, but he has a real eager to please nature and thankfully is usually smiling and happy.

    My sons school meet with me every 3 months to discuss my son , he does not have a statement and is not officially diagnosed although they have said and the speech therapist agrees (she sits in on meetings) that he is on the spectrum and probably Aspergers, but they deal with any needs he may have as he is not high need, they have advised me to possibly think of getting him accessed before high school, so any  extra help needed to settle in (he can get quite anxious over new things) could be put in place.

    can you not have a private talk with a collegue at work over what could be put in place to aid your daughter should problems arise?  it would help you decide if it was worth the evaluation, which if problems arise and then you act could take  6 months to a year to get?!

    It is such a hard decision, i would start my talking to your head at your school for advice.

    My husband has mild Aspergers and was never officially diagnosed and there are lots of successful people out there who are not, but i think they always have there quiet battles, maybe an diagnosis at a younger age would have helped him deal with those?!  as i say i am going through the same struggles at the moment i really sympathize, no easy decision.

    What i am not sure of is does the "label" only stay in place with school authorities or is it noted elsewhere?!  does it follow them through life?

     

    good luck

     

  • The benefits in getting a diagnosis now are for your daughter when she is an adult. If she is diagnosed now then if she has problems later the diagnosis will be in place and there is a far greater chance that she will have access to the appropriate help. If not she is likely to go through a range of diagnoses before Asperger's is considered.

    Have you read the book Aspergirls by Rudy Simone? There is a table at the back with aspergirls characteristics/traits which may be helpful.

    In my opinion, as someone with Asperger's, not diagnosed until I was an adult, it is high school which is where things get really bad for Aspergirls. Intellectually school was fine, but the social side was a disaster, and because I was very immature I was not ready for the types of work expected. For example, there can be a lot of themes in English which people with Asperger's are not ready for/interested in.

    Also, I notice you say your daughter is closest to two boys. This is exactly like my time at school. My best friend was a boy. Girls are at that age (and beyond) are a complete nightmare for any girl who doesn't get all the social cues and subtleties. Also, they may be interested only in fashoin/gossip/boys in a way that was for too mature for as Aspergirl of the same age. Often both boys and girls with Asperger's are still interested in very childlike things for a long time, or their special interests are not "cool" enough.

    Lastly, the main thing about getting a diagnosis is that you see in your daughter a the core issues of the condition, so you would also expect sensory sensitivity (or lack of sensitivity) for example. Tony Attwood's book The Complete Guide to Asperger's Syndrome is the best, I think.

  • hi - if you haven't already, have a look at posts on here to do with how children can have problems when in secondary school.  It may help you + your husband to make your minds up.  Also, how would your daughter feel about going for a diagnosis?  There are posts on here about older children and adults who have sought or received a diagnosis later than others.  Those posts are also worth a look.  I think you're instincts, plus your knowledge of autism are probably right.  Some people are very objective and are more wary of instinct than others.  However, I think a number of parents on here would say they felt there was something different with their child, quite often from a very young age.  In the end you've got to weigh it all up : what will be in the best interests of your daughter?  bw