Starting a discussion with my 10 year old daughter on having high functioning autism for the first time

Hi. I am new to the site, having recently moved back to the UK. My daughter is 10. Just before the move the school counsellor at my kids' last school said she thought it was likely that my daughter has autism (high functioning). This came after several years of challenges at school and at home (nothing extreme but enough unusual behaviour to ring some alarm bells. It was not immediately obvious to the counsellor especially as my daughter had several close friends and values friendship highly and has not educational problems as was as being a very good communicator. But she said this was typical with HF autism as children can learn to mimic social behaviour and find their own coping strategies to hide the issue). My daughter also has epilepsy and I understand the conditions are associated.

Having read up a bit on the subject I think the counsellor is correct as my daughter has many of what seem to be the 'typical behaviours' (difficulty with emotional regulation, inflexible outlook, resistance due to fear and anxiety of many new situations, socially awkward and difficulty forming friendships - though she sadly left behind two very good friends when we left our last home. I could list some more behaviours but these are the main ones). We don't have a diagnosis formally and I understand she would need formal assessment here to get that. I have asked for a referral but know this could be a long while.

However, as we are approaching transition to secondary it seems important we start dealing with this. My main concern right now is that my daughter is getting very anxious about this transition to having just now started to understand how large secondary schools are here. She has not really made new friends yet and really the whole stress and difficulty with a cross continental move is taking its toll on top of all this. I feel now would be a good time to try to explain to her that her feelings and challenges are linked to a specific neurological condition. (Right now she seems to be starting to label herself a depressive with 'black thoughts'). I know that having more understanding of the condition can help some children to cope better with being autistic. But I am afraid if I broach this topic alone without any advice from professionals I could do more harm than good. Can anyone give me some advice on how to approach this, what to say, what not to say etc.? Would anyone advise me not to talk about it before the assessment or before getting specific advice from a professional, especially if I am to actually use the term autism which seems a major step for us to take? I really feel its the right time for us to talk more about this, especially with the discussion about which secondary school that is looming and not an easy one to navigate. I don't just want to wait the 6 months or longer that the assessment might take. Any advice appreciated. Thx.  

  • Hi, 

       we have an Asperger son , who has always been happy , quiet  and very bright . Age eleven  he moved up to a local high school from the lower school. All was well or so I thought until we decided to move house to another area.  I thought this might be an upheaval but to  our amazement I asked if he would like to change schools he couldn't wait to leave apparently he thought the school that he was attending was horrible!.  We moved, he settled in beautifully and for the first time in his life had best friends something he had never achieved. He is 27 now and all of them  are very close friends.  I guess what I am trying to say is keep an eye on your daughter and ask her from time to time is she is ok.  Sadly years ago no diagnosis was available and only  a few years ago my husband and son now become aware including me.  Eccentric people, odd behavior always surrounded me so just never picked up on the condition.  These days thankfully these conditions are more identifiable and your daughters school will no doubt be aware and will reassure you.  My sons school had a system of friend match which worked perfect  one with ADHD now his best friend I guess same planet..  Give the school a call and possibly ask if they have any girls who will befriend your daughter to help her settle in.  Maybe play a few family games on a weekend on the school pitch.  Contact the school and ask for a map and layout guide.  Show her possible links to a school website.  Good luck be positive I hope your daughter will be very happy  there.

  • Hello,I am new here too.My daughter has just been diagnosed with ASD. My daughter first expressed to me that she was feeling 'depressed and suicidal' when she was 10years old .Too much to detail-Since starting secondary school,I feel that my daughter has experienced a series of 'thematic' issues: chronic fatigue, food issues, anxiety, panic attacks ,continued bouts of suicidal ideation and brief 'exploration of self harm/cutting'.

    I was aware when my daughter was referred to CAHMS that it could be a slow process to identify suitable methods/approaches to help her-it was clear my daughter experiences difficulties but I didn't enter this knowing that this would lead to a diagnosis of ASD.Looking back I let my daughter initiate conversations about school,any worries...When my daughter and were informed that an assessment for ASD should be beneficial we were advised that there was no need to dwell upon the term  'autism'.I know my daughter well enough,she had not appreciated me taking her to the GP when she first mentioned 'depression and suicide' ,she was not impressed that had been referred to CAHMS-'I know there is something wrong with me ,I don't need a stranger to tell me'.The fact the process of assessment takes a relatively long time is frustrating(it has been for me) but upon reflection I think this has been  good thing for my daughter,it has taken time for her to feel 'comfortable; and to trust the professionals-she has moved on from thinking 'Mum it is your job to sort things out because you are a mum and that's your role and responsibility,you are also a professional,you work with children and help them,why do we need to speak to people we do not know!'...It has been difficult but along the way I have simply listened to my daughter,I offer reassurance when she needs it.Any conversation will occur naturally,it does not need to be forced.The CAHMS team do not think my daughter is depressed ,I do not think my daughter is depressed.However it is okay for her to use the term because it makes sense to her. I can not describe how awful it is to hear my daughter express her thoughts about suicidal ideation but it makes me feel 'good' that she is able to talk to me and has continued to do so-when /if something as concerning as this occurs during once you have met with the team/person dealing with your daughter's case they will offer advice and support as a matter of priority.(On a couple of occasions my daughter has required emergency appointments/within 24hrs. It is only now that my daughter has received a diagnosis of ASD that she feels it appropriate to use the term to describe her 'difference,she doesn't mind me referring to this term because the experts have offered a very detailed explanation of her assessment.My daughter does not want to known (amongst her peer group)as the 'autistic girl'..'.I want people to recognise me,not project what they think autism is,however,I haven't been to school in months so most people probably think I am dead!'

    School has been /continues to be a source of stress ,anxiety.for my daughter.Prior to diagnosis I requested the input of ED Psych( a separate service from CAHMS as ED Pscyh is part of the Education system, CAHMS is part of the Health system)Ed Psych agree with my priotity for my daughter-well being is more important than school attendance.I have focused my energy on making my daughter's life bearable-she loves all things Anime,Cosplay, Manga, Musical Theatre...it has been incredibly important for her to establish friendships beyond school(my daughter has missed so much school she has not established any friendships-she says people do not bother me,I don't get bullied but I the 'mysterious girl who is hardly ever in class'.Much to my delight my daughter has developed a a couple of friendships through her love of Cosplay-they all seems to be very similar and share the same level of intense interest in ANIME...

    My advice-keep doing what you are doing,you are an expert when it comes to your daughter but you can still be mum-no need for you to start talking about autism,it is difficult but still possible to wait to let the experts do their part .Get in touch with the secondary school to help develop a positive connection with them as soon as possible,encourage your daughter to explore interests beyond the real of school...well being first..the rest will follow,

    My daughter is now able to see the value in the time spent at CAHMS,resistant at first ,she is now able to identify that I did the right thing taking her to see the GP,the team at CAHMS...she makes a good point about why she never wanted to talk about autism before her diagnosis-'I had not been diagnosed,what if it led to a different diagnosis?'She seems relieved and comfortable with ASD 'label' but the time for taking about it is with the experts-makes sense.

    Wishing you all the best