Recent diagnosis and repercussions

My daughter was diagnosed recently with ASD (and anxiety, social phobia and OCD). She's been misdiagnosed several times and is now 16 y.o. Her psychologist doesn't think it's useful for her to know her own diagnosis at this point and neither does my husband. I really think that she has a right to know (though obviously it should be explained carefully at the right time and we don't need to dwell on it).  My husband is telling her we can talk to her school and get her some help with her work because she has OCD and she's like "Why would I get help with my work because I have OCD?". I think that my daughter is strong enough to handle her own diagnosis and they are worried it will tip her over the edge as she's so desperate to be a normal teenager who fits in. Also, if we tell the school, as we should, wouldn't it be worse if she found out through someone else? Am I being selfish because I am an open person and because I myself feel the need to discuss the diagnosis? I think that if she knows why she's different, she will understand that difference better. I am English but my husband isn't and we often have different opinions but I feel we need to be open to get the necessary support. 

  • Yes absolutely, my mother's whole childhood she was lied to about who she really was (an adoption issue).  That lie has dominated her whole life, and undermined her trust in those she should have been able to lean on for support.  We all need to know who we are.

  • When I was young my grandfather developed cancer. Our parents hid it from us. They didn’t want to upset us. We didn’t find out till he was literally on his deathbed and by the time we got to him he was on life support and barely conscious. The hospital wouldn’t let us see him.

    for years after I was often struck by the thought that my parents could be keeping secrets from me, secrets that could hurt me. So I installed a phone tap to let me covertly listen to all the land lines phone calls.

    one thing a lot of autistic people struggle with is the notion of a white lie, or lying for someone else’s benefit.
    in two years time your daughter will be 18 and her doctor will have to tell her she is autistic and that he’s known this for 2 years. What do you think will happen then? Better she knows now. Better when she goes to university there is a formal package of support in place so she can have That ‘normal’ life she wants so much. Because it won’t just automatically happen for her without support and freshers week is one of the best times to start over.

  • You need to tell her. I'm sorry to be so blunt, but you do. At 16, your daughter is almost a young adult, and this is her business more than it is absolutely anyone else's, and if you act like it's a terrible shameful secret, then that's what your daughter will think it is when she inevitably finds out. I have to be really honest and say I'm not sure what that psychologist is thinking. I would suggest following your instincts that your daughter has a right to know, because she does. I know it will be a difficult conversation, but it's best she hears it from you as her mother, who loves and supports her unconditionally.

  • Well your daughter has a desire to fit in and be a normal teenager. All these other things to try and help her with her OCD, she does not want, because that makes her different from being a normal teenager. And if you tell the school she has ASD without your daughter's knowledge or consent, that'll probably send your daughter over the edge. It's not about whether or not your daughter is strong enough mentally to handle the diagnosis, it's that she'll perceive ASD as another thing she does not want that prevents her from being a normal teenager, instead of just accepting ASD as the way that her mind works, and there are many brilliant people who are on the autistic spectrum, but she'll likely only see the negatives instead of the positives, which is a concern. 

    I think that she needs something to fit and makes sense to her. I mean even mbti personality tests can be a thing that can resonate and fit and make people understand themselves and accept themselves more. But being diagnosed with ASD when you don't know what that's about and don't know anything about the traits, can be scary. I think she should know at some point in time though.  

  • Ooooh 16 months might be different, but 16 years? K, I can't pretend to know your individual circumstances or your daughters, so don't know if there is anything else which means I should shut up, but I'd have thought on a logical level, that she can't begin to understand or accept herself or manage the social phobia, or learn how to manage in this world until she knows. I'm actually quite shocked she hasn't been told thus far by the services - gently, emphasising benefit as well as challenge, of course. But, she must sense she's different...

    I know, if anyone had known and kept it from me at 16, I would never have forgiven them later. But that, of course, is just me.

  • Hi ,

    Thank you for sharing this with the community. I'm sorry to hear that you feel conflicted about whether to discuss your daughter's diagnosis with her. 

    Firstly, you may find the following page our website useful:

    https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/post-diagnosis-support

    If you feel that seeking support from school would be beneficial, the following page contains a lot of helpful information about education for a child with an autism:

    https://www.autism.org.uk/advice-and-guidance/topics/education

    This includes information regarding getting extra support for your child in their education setting.

    You can search for schools that cater for children with an autism spectrum disorder on our Autism Services Directory: https://www.autism.org.uk/directory

    You may want to contact our Education Rights Service who provides information, support and advice on educational provision and entitlements. Please see the following link for further information:

    https://www.autism.org.uk/what-we-do/help-and-support/education-advice-line


    It may be worth considering some professional support for your daughter as this may help her to cope with a diagnosis. If you were interested in counselling (NHS & private), you may like to have a look on the Autism Services Directory: http://www.autism.org.uk/directory  under 'Health' & 'Counsellors'

     If there are no counsellors in your area on the directory, you may like to try the links suggested at end of this web page :

     https://www.autism.org.uk/advice-and-guidance/topics/strategies-and-interventions/strategies-and-interventions/counselling#H2_6

    All the best,

    Chloe Mod