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11 year old disagrees being placed on the autistic pathway

Quinny88

Hello,

My 11 year old daughter was put on the ADHD and Autism Pathway, at the recommendation of her school teacher, 6 months ago. This made sense to me, and answered a lot of questions (sensory struggles, emotional and social struggles). CAMHS have done the initial assessments, spoken to my daughter and have read the teachers reports. They said there is significant evidence to continue with the assessment. My daughter is very much against the idea. She says she 'knows her own brain' and she does not want, and doesn't have autism and never asked for this attention.

I want to give her as much help and support as possible. A bit of background - she has had a terrible year at school, about 4 months ago she was assaulted violently on the school playground by a boy (she had her hair ripped out, and punched repeatedly, and shoes thrown across the playground)  As parents, we tried everything to help her - we went above school authority to get the boy expelled (didn't work), we went to the police (didn't get far as there was no cctv), we reduced her school hours to half because of her mental health, and I didn't feel that she was safe in school. Even so, the bullying continued from other children... physical and verbal, including knife threats. My daughter was self harming before this incident, and increased after, she even talked of suicide in school. At this point we said enough was enough and we removed her from a school setting for home education. Eventually, a school said they had a place for her, and it's been wonderful to see our daughter thrive again. 

So as you can understand, my daughter is desperate for her fresh start and put all of that behind her. As she said, she wants 'no fuss'. Today I gave her a book for autistic girls, at the recommendation of her teacher, and it looked great - really relaxed, and written by a teenage girl. It didn't go down well. I have explained how amazing she is and told her to give the book a go, it may help. She got quite cross with me, and she said she didn't need it, and she doesn't think she has autism. I don't want her to feel like I'm pushing something on her. However with her high school transition coming up, the pastoral team want to speak with her about how they can help... seems like that would only upset my daughter more. I have told my daughter that CAMHS said they want to continue on the pathway, but I understood how she felt and I didn't press the matter. 

I get it, it's not like she's going to have a blood test for Autism and get a result! My hope is for her to understand herself, and get passed the negative ideas she has about herself. Am I pushing this on her?! Our close family member is a teacher and said there is definitely a neurodivergence there. Family have made less helpful comments about 'everyone being labelled nowadays'. Personally, we feel like it would be remiss of us as parents, not to go as far as CAMHS wished to. I read about a lot of teens feeling relieved when they get a diagnosis.... but it's just not my daughters experience... so far. Any tips would be greatly appreciated. 

Parents

  • Gosh - it was quite shocking to hear of the experiences your daughter has been through with an assault and bullying in school. How incredibly distressing for her and for you. That’s really trauma and it’s a real achievement that she is now feeling so positive in her new school - that really is something to celebrate and be grateful for! 
    I felt very strongly on reading your post that your daughter currently has a very strong and very understandable desire to move on from all the negativity of her past experience of education to something more straightforward and positive. And who can blame her?! After all that distress she just wants a ‘normal life’ - a happier life - and for her right now that means not being diagnosed with any kind of ‘disorder’. I know that the use of the word ‘disorder’ in relation to autism is controversial in some ways - but I imagine that’s how she’s viewing it right now: as not a good thing! Just another ‘problem’ - and she’s understandably wanting to leave her problems behind her (in her words: she wants “no fuss”).
    I think you have to respect her wishes on this. Ultimately you can’t pursue the diagnosis without her consent anyway - and the more you push the more she will resist - that’s just human nature. She might change her mind in time - or she might not. 
    If I were in your shoes right now I would say the following: “I totally understand why you don’t want to pursue this right now. You’ve been through so much and you’ve worked so hard to move on and are doing so well - and I’m so incredibly proud of you. I respect the fact that at the moment you feel confident enough to continue your education without exploring the possibility of autism being a part of that. I want you to feel empowered and I want you to know that I’ll respect your choices regarding this. However if at some point in the future you change your mind and you feel you want to explore whether or not autism is relevant to how you function in the world then please talk to me and we can look into it together to see if it would be beneficial for you to learn more. But no pressure. It’s your life and your choice. But I’m here for you either way.”

    Thats what I would say, were I in your situation. 
    Not every autistic person wants a diagnosis. My youngest was diagnosed at 10 years old, and my eldest was diagnosed in his mid twenties. I was diagnosed in my fifties! You don’t have to rush this if she’s not ready. What REALLY matters is her well being - and you can support her in that without the diagnosis. A diagnosis can be helpful - but it’s not a silver bullet and if she views it really negatively at the moment then it might even do more harm than good if it dents her confidence and self esteem just at the point that she’s managing to rebuild those things.

    I would give her space and time. Respect her boundaries and make it clear her that there’s no rush and no pressure regarding this - and that when she’s ready (should she ever be ready that is) you’ll be there to support her. 

    It’s just so wonderful that she’s doing so well now after so much trauma at her old school - no wonder she feels afraid to rock the boat with anything more now that she’s finally so much happier. 

Reply

  • Gosh - it was quite shocking to hear of the experiences your daughter has been through with an assault and bullying in school. How incredibly distressing for her and for you. That’s really trauma and it’s a real achievement that she is now feeling so positive in her new school - that really is something to celebrate and be grateful for! 
    I felt very strongly on reading your post that your daughter currently has a very strong and very understandable desire to move on from all the negativity of her past experience of education to something more straightforward and positive. And who can blame her?! After all that distress she just wants a ‘normal life’ - a happier life - and for her right now that means not being diagnosed with any kind of ‘disorder’. I know that the use of the word ‘disorder’ in relation to autism is controversial in some ways - but I imagine that’s how she’s viewing it right now: as not a good thing! Just another ‘problem’ - and she’s understandably wanting to leave her problems behind her (in her words: she wants “no fuss”).
    I think you have to respect her wishes on this. Ultimately you can’t pursue the diagnosis without her consent anyway - and the more you push the more she will resist - that’s just human nature. She might change her mind in time - or she might not. 
    If I were in your shoes right now I would say the following: “I totally understand why you don’t want to pursue this right now. You’ve been through so much and you’ve worked so hard to move on and are doing so well - and I’m so incredibly proud of you. I respect the fact that at the moment you feel confident enough to continue your education without exploring the possibility of autism being a part of that. I want you to feel empowered and I want you to know that I’ll respect your choices regarding this. However if at some point in the future you change your mind and you feel you want to explore whether or not autism is relevant to how you function in the world then please talk to me and we can look into it together to see if it would be beneficial for you to learn more. But no pressure. It’s your life and your choice. But I’m here for you either way.”

    Thats what I would say, were I in your situation. 
    Not every autistic person wants a diagnosis. My youngest was diagnosed at 10 years old, and my eldest was diagnosed in his mid twenties. I was diagnosed in my fifties! You don’t have to rush this if she’s not ready. What REALLY matters is her well being - and you can support her in that without the diagnosis. A diagnosis can be helpful - but it’s not a silver bullet and if she views it really negatively at the moment then it might even do more harm than good if it dents her confidence and self esteem just at the point that she’s managing to rebuild those things.

    I would give her space and time. Respect her boundaries and make it clear her that there’s no rush and no pressure regarding this - and that when she’s ready (should she ever be ready that is) you’ll be there to support her. 

    It’s just so wonderful that she’s doing so well now after so much trauma at her old school - no wonder she feels afraid to rock the boat with anything more now that she’s finally so much happier. 

Children
  • in reply to Kate Kestrel

    Hi Kate, thankyou for your kind and wise words. Yes, she really has come such a long way. We have been so proud of her, and watch her be so resilient in the face of it all. We have just been so devastated for her that this was her of experience, in her last year of primary school. What a set back! It has been intensely painful for her. Thinking of it now, it’s been attention from headteacher, deputy heads, counsellors, and for nothing positive. 

    In all honestly I’ve had so much anxiety over this  (my youngest was 5 month old at the time this all kicked off…) but we have tried to hide that from her. I wish I could say I was confident and had all the answers at the time. 

    I did have the chat with her that you suggested, and it went down well. Thankyou. Albeit, she did cut me off short (ha ha!) but came back to me in her own time and brought the subject up…. Definately progress. My take away from her was: “just chill out mum”…. Noted! I’ll not bring it up again and will probably swerve the high school extra transition days we were offered. No fuss. Thank you Kate.