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Is it important to get a diagnosis?

NikNakNook

Hi everybody! I hope you are all coping ok during these difficult times. I am brand new to the forum and just after some initial opinions/ advice please. Apologies as this may be lengthy!

My beautiful daughter is 8, and since she was very young I have had my suspicions she may well be on the autistic spectrum. She had some delayed speech and didn't walk until well after ages one, but by her 2 year check she was as expected so there were no worries at that stage.

She has a few obsessive traits (pausing the television constantly and spotting inconsistencies is the main one - she will make a GREAT video editor someday!). When she was younger she used to line up her little toy figures etc and still does similar in that she organises her teddy bears in a specific order before bed.

She is a stickler for routine and gets really stressed out when certain things deviate from her expectations. School have never mentioned anything to us as I think she possibly masks it really well during school hours, which can lead to major meltdowns when she comes home. I think she does what could be described as 'stimming' - she jumps up and down constantly in front of the television and runs from one side of the room to the other looking up at the ceiling and making a humming sound. She recently broke her collarbone so was under strict orders not to jump about and she very obviously struggled with this at times. She doesn't do this anywhere else except my parents - she has an extremely close relationship with them and acts as she would at home, but anywhere else she becomes a little bit more withdrawn and really looks to her brother for reassurance.

At home she is very tactile with us and loves to be be cuddled and stroked, and she has a great relationship with her ten year old brother and my niece who is also 8. In school she is genuinely well loved by the whole class (and her teachers - she is a model pupil), but she doesn't have a specific 'best friend' and is very happy playing on her own. Academically she is a fantastic reader but in everything else she is probably average, except for maths which I think she struggles with somewhat. She takes things very literally - I find it difficult to explain what I mean by this but as an example we asked her to Facetime her Grandma yesterday to thank her for her Easter Egg. She called her and said "I'm ringing you to thank you for my Easter Egg". End of conversation!

She is quite immature at times, particularly in relation to what she watches on the television and the youtube videos she watches, and she is an extremely fussy eater and dresser. She had MAJOR tantrums when she was younger to the point where she would hit me and it was extremely upsetting. I quickly learned that staying calm and comforting her was the best way to stop the meltdowns and over the years, although she can still fly off the handle over seemingly nothing, I feel as I parents my husband and I manage this much better now and she hasn't been physical with me for probably about 3 years. 

She has an extremely dry sense of humour and regularly has us in stitches with what she says, but sometimes gets upset when we laugh, thinking we are laughing at her. She very obviously doesn't realise she has said something funny sometimes and this confuses her.

So to get my point (sorry!) - for those parents who have experienced similar / more / less with your children, do you think I should be seeking a diagnosis for my daughter? We don't necessarilly feel we need any support at home and there are currently no issues in school as I say, but from experience does anybody think this may change as she is getting older? My worry is that we are selfishly going about our lives and just adapting to her when she needs, but I would be devastated if there is more we could / should be doing and this impacts her negatively later on. I know of adults who have a late diagnosis and they wish they had this when they were children so I am very conflicted as to what is best for my daughter.

Any advice very gratefully received

Thank you Slight smile

  • Thank you so much everybody for your replies and advice. Just to update, I have now been in touch with school and they are being incredibly supportive. It is obviously going to be tricky getting anything arranged quickly under the current circumstances but already I feel like a weight has been lifted just by making our concerns known. Finally realised that I have been dealing with a lot of worries for about 6 years now and talking about it is helping a lot!

  • Diagnosis is only necessary if you or your daughter need help. Perhaps it might be worth having a chat with your daughter's school to discuss your concerns and ask their opinion before taking it to your GP? 

    Identifying ASD in girls can be tricky as they often will "mask" the disorder in an attempt to appear more normal to friends, parents and teachers. 

  • in reply to NikNakNook

    Her school should be able to help you document the behaviours and situations that might benefit from additional support, so when they do resume ask if you can schedule a quick meeting to discuss their existing procedures and processes on such matters.

    They'll already have this sort of thing in place, and will have local education authority support too. Invite them to prioritise information capture and assessment rather than interventions, as that will be easier for them and also avoid untimely or inappropriate actions that won't benefit your daughter.

  • in reply to Just some guy

    Thank you for your reply, really helpful. For an initial conversation with my GP would I need to bring my daughter along with me? 

    Do you think (or know if) it is worth discussing with school as well? I am a bit undecided about whether highlighting my concerns (wrong word but you get my gist) now would be a good thing or a negative thing.

    So much to think about!

  • in reply to NAS23348

    The other thing to consider is how your daughter feels about herself. As she gets older age may become more aware of how she is different from many of her peers and this could cause anxiety. Being able to articulate to her why that is may make it easier for her to digest.

    This is the main reason why I have been pondering this more than I have done previously. I am definitely noticing more differences between her and her peers recently, and do think it is only a matter of time before she and they do as well. I always encourage her to talk about how she is feeling and tell me when she is frustrated etc and really want to limit any anxiety she may feel as she gets older.

    Naturally as she grows up she will probably tell 'mummy' less and less so I just want to equip her as best I can whilst I can! Thank you for the reply, really helpful.

  • Hi

    I'm theory no, in practice you may want to consider it.  

    Any support that may be necessary in future should be based purely on need regardless of diagnosis. In the real world having the "label" may make it easier to get assistance should you need it.

    My thought is that I can't see any downside to going through diagnosis. If it confirms your suspicion but your daughter manages to access education and social activities then it's information you'll never need. If she does start to experience difficulties having the diagnosis may mean you can get support sooner.

    The other thing to consider is how your daughter feels about herself. As she gets older age may become more aware of how she is different from many of her peers and this could cause anxiety. Being able to articulate to her why that is may make it easier for her to digest.

    Whatever you decide to do makes no difference to who she is and how she acts. Having a label is only necessary in terms of helping others understand her needs or helping her understand why she finds certain things harder than other people.

    Good luck whatever conclusion you reach.

  • Rather than worry about an autism diagnosis, speak with your GP regarding the behaviours that your daughter exhibits that are more extreme or abnormal to her peers. That way the GP can work with you to understand whether various assessments would be sensible, which may include autism but may also cover other potential causes.

    That way you can find any actual underlying drivers for her behaviour, and thus the strategies to respond to those, whether it is aspects of an autism spectrum disorder or something else.