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Exhausted and overwhelmed with the responsibility of supporting my newly diagnosed daughter

FSCR

My 17 year old daughter was diagnosed with autism just before Christmas. This is the culmination of a difficult five year journey where the NHS have offered little care or support, no 'joined up' thinking over my daughter's various mental and physical health problems and effectively acted as gatekeepers to achieving this diagnosis and the vital support that my daughter needs. In my daughter's words, "Why does no one care or help me?" In the end I paid for a private diagnosis. In fact i paid twice. In my desperate piecing together of her personal jigsaw of difficulties and behaviours I first thought that she might have Tourette's Syndrome. The clinicians who carried out this initial assessment were the first health or educational specialists to mention ASD.

As a family, my daughter included, we welcome this diagnosis. My daughter is still the amazing young woman that she always was, she just happens to be autistic. The problem is that I am so exhausted by this journey, and overwhelmed by the on-going responsibility of supporting her that I have fallen into depression and am struggling to cope. I thought that this diagnosis would empower and energise me further. The way forward should be clearer as I know where and what to look for in terms of help and support but all I see is an impossible task that I can no longer rise to. I am optimistic for my daughter's future but pessimistic about my own. 

If anyone can share their experiences of how they moved forward after diagnosis of a teenager/older child it would be really useful. Having my daughter assessed just before Christmas, when all forms of support are closed until 4th January and we were all moving into COVID-19 Tier 4 was poor timing to say the least. Thank you.

Parents

  • Your post caught my eye as I have a 15 year old daughter and I am fairly sure she is high functioning ASD. She has so many traits that have become more apparent in recent years. I Took her to a clinical psychologist when she was about 8 for eating habits/aversion to food textures and they were looking to further test etc . On reflection I was a bit in denial and just thought her quirks were what made her special. They didn't come to a conclusion and said it could manifest in her teens. I went to my Dr a year and a half ago and explained all that and she just kind of rolled eyes almost and said what makes you think this? Make a diary speak to school. I felt so deflated about her reaction I felt school may be the same with me. I called the school last year to discuss with her pupil support teacher but while waiting for a callback we went in to lockdown. My mum has worked with autistic children for 30 years and explained a lot to me but I am really struggling with how to start the discussion again with the Dr/school. She hides it so well, perfect pupil but refuses to study,  homework, gets frustrated about having to go to school, complaining about it constantly. I feel like they won't believe me but I really need to do this before she gets any older. 

Reply

  • Your post caught my eye as I have a 15 year old daughter and I am fairly sure she is high functioning ASD. She has so many traits that have become more apparent in recent years. I Took her to a clinical psychologist when she was about 8 for eating habits/aversion to food textures and they were looking to further test etc . On reflection I was a bit in denial and just thought her quirks were what made her special. They didn't come to a conclusion and said it could manifest in her teens. I went to my Dr a year and a half ago and explained all that and she just kind of rolled eyes almost and said what makes you think this? Make a diary speak to school. I felt so deflated about her reaction I felt school may be the same with me. I called the school last year to discuss with her pupil support teacher but while waiting for a callback we went in to lockdown. My mum has worked with autistic children for 30 years and explained a lot to me but I am really struggling with how to start the discussion again with the Dr/school. She hides it so well, perfect pupil but refuses to study,  homework, gets frustrated about having to go to school, complaining about it constantly. I feel like they won't believe me but I really need to do this before she gets any older. 

Children
  • in reply to NAS71280

    I am sad and angry but not surprised to read about the difficulties that you are having being heard. My daughter's traits became more apparent as she got older but she had already developed OCD and anxiety by the age of 12. As I wrote before no one ever mentioned the word autism to us despite her being referred to the mental health services twice, being assessed by 'professionals', attending a group course for young people with OCD, receiving 1-1 therapy when the OCD strategies did not work for her and being in a school with an autism hub. I find this incredible. She did however receive a lot of support from the school for her anxiety which made it possible for her to stay in school and achieve well.

    In my experience you will have to be more forceful and persistent than is comfortable if you want the NHS to even listen to your concerns, especially at the moment with COVID preventing face-to-face appointments. You have to do all the work. When the doctor did listen to us we were told that the waiting time for an NHS assessment was at least six months and possibly two years! Personally I would just go for a private assessment, which is what we did, but I know that this is not financially possible for everyone. In fact we paid for two private assessments as I tried to piece together my daughters issues and firstly pursued an assessment for Tourettes Syndrome.. I did prepare an enormous time-line of evidence and concerns (diary) prior to the assessment, which was useful although the assessment could not have been more thorough. After receipt of the assessment report we sent this to the doctor who completely accepted the outcome and was supportive. We self-referred our daughter to the mental health services yet again. They also accepted the assessment and she is now waiting to see a psychiatrist and for 1-1 therapy. The waiting time for this is unacceptable just like everything else concerning mental health and the NHS. Her Sixth Form College, which she only started in September, also accepted the report and immediately put learning support and a mentor in place. The assessment report was worth every penny that I paid for it.

    This may sound overwhelming, which is why I have been so overwhelmed and exhausted, but I feel that it is completely up to you. I feel let down by the NHS. I am now receiving private counselling to help me cope in supporting my daughter whilst we wait and then wait some more. 

    I hope this is helpful and doesn't read too negatively. Please do get in touch again if you want/need more support.