New ASD Diagnosis for my 14 year old daughter.....

Hello there, this is my first post and I have to say I'm still a little shell-shocked.  My daughter has recently been diagnosed with ASD. She is 14 years old and this diagnosis, for me as her mum, comes 13 months too late. You could say it comes 14 years too late. I have always known my daughter to be different, certainly in relation to how she interacts with others and social situations. At the age of 7 she kept telling me she didn't want to live anymore. I took her to the GP and he referred her to CAMHS. After a 'comprehensive assessment' (ok?), and a little play therapy the 'professionals' concluded that my daughter was, "a highly sensitive little girl, with no evidence of any underlying medical condition". They also concluded that much of my daughter's difficulties were down to me, my parenting and divorce. Around 13 months ago, my daughter became increasingly depressed and anxious, not finding any joy in the activities, particularly with her family, that she had done previously. Her mood continued to deteriorate, to the point she then became very violent, towards me and her maternal grandmother. This violence continued for around 6 months and was unrelenting, often witnessed by her little 7 year old brother and my partner who felt helpless to intervene. What always followed after episodes of violence towards me, her mum, were episodes of self-harm which more often than not, resulted in visits to A&E. Wounds dressed and sent home to anticipate the next crisis. My mother became ill and needed medication, my father's psorasis became so bad he required admittance to hospital for treatment. I ran away. Only for 7 hours, but enough time for the Police to get involved, along with Social Services. Social Services were brilliant, but "couldn't intervene beyond a certain point because there was no safeguarding issue". They did set up respite for me and the rest of my family, and kicked my daughter's father's butt into gear, he started to have my daughter two weekends every month, which soon diminished when they removed their intervention. The violence stopped and the self-harm increased, as did the suicidal intent and depression. After checking out NICE guidelines I recognised that CAMHS had only carried out a psychosocial assessment not a comprehensive one. After being told by my GP to " read the bold section that says ring CAMHS" when I took my daughter to see him in crisis, I raced her to A&E again, only to sit there for 10 hours and be told that, whilst they believed she was a risk to herself, they couldn't admit her to children's ward because she did not have a 'physical' disability and CAMHS was "all I had". On my next visit to A&E I was prepared. Armed with my NICE guidelines and my diary I catalogued to them the Service's woeful failings to both my daughter, me, her mum, and her brother. I challenged them on their huge waste on resources when a comprehensive assessment would highlight at least a mental health diagnosis of depression. Finally I was heard, after 13 months of fighting a wonderful CAMHS doctor put his pen down last week after our meeting and said, "Your daughter has Autism, it has nothing to do with how you have brought her up, your parenting abilities or you as a mum". Whilst it give me huge relief it comes a little too late, my daughter is now on Prozac, my son hardly wants to live at home, prefering to stay with daddy or grandma and my partner and I try to pick up now the trainwreck that was once a happy and flourishing relationship. On a positive note, it does help explain my daughter's behaviour. She has been described by many around her, including her dad, as "selfish, crazy and 'nothing wrong, all teenagers self-harm, it's just evidence of on-coming womanhood'! Anyone else have a similar story to me??? Late diagnosis of ASD for their son or daughter????

Parents
  • Hi

    If the OT and the counsellor are speculating about it enough to refer her for assessment, they have already seen enough to give them reason to. It doesn't necessarily follow that she IS, but that she gives them reason to think so.

    The important part is the actual asessment as this will be done by a professional with a greater ability to diagnose the condition.

    You are clearly already talking with school, and apart from you they are the most important people to be involved, as they have care of her so much.

    Your greatest personal help and support at the moment will come from this charity. These discussions are here for you to ask, and lots of us will be looking so you will get answers - just like this one! Don't forget to go through all of the information, and don't forget that there is a helpline and e-mail address as well for you to use.

    You may find that you are the parent of a special child, and that makes you a special Mum. It isn't all doom and gloom at all, often the reverse.

    Ask us anything you like, or just come here for electronic hugs if you need them. Just by the way we say things, I'm told you'll get an insight into our world.

    I expect that you have some immediate concerns about her behaviour. Tell us about them and we may just have the answer for you!

    Hope that helps?

Reply
  • Hi

    If the OT and the counsellor are speculating about it enough to refer her for assessment, they have already seen enough to give them reason to. It doesn't necessarily follow that she IS, but that she gives them reason to think so.

    The important part is the actual asessment as this will be done by a professional with a greater ability to diagnose the condition.

    You are clearly already talking with school, and apart from you they are the most important people to be involved, as they have care of her so much.

    Your greatest personal help and support at the moment will come from this charity. These discussions are here for you to ask, and lots of us will be looking so you will get answers - just like this one! Don't forget to go through all of the information, and don't forget that there is a helpline and e-mail address as well for you to use.

    You may find that you are the parent of a special child, and that makes you a special Mum. It isn't all doom and gloom at all, often the reverse.

    Ask us anything you like, or just come here for electronic hugs if you need them. Just by the way we say things, I'm told you'll get an insight into our world.

    I expect that you have some immediate concerns about her behaviour. Tell us about them and we may just have the answer for you!

    Hope that helps?

Children
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