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
  • Oh what sad stories and they sound like my sons too. You must all feel knackered and let down by the system just like I do

    My son wasn't diagnosed until he was 17 - last year , after a period self harm and depression.

    We had two previous referrral to camhs  when he was 7 and again after a very bad run of exclusions at school . Violent outbusts that everyone thought were anger management issues . The finger always seems to point at Mum  but my conscience was clear - he has a twin brother with no such issues , so why blame parenting.

    The diagnostic test is so straight forward  and took 30 mins max. Even last year when they finally said they thought he had autism there was a 6 month waiting list.

    The depression made him miss so much colleg he eventually stopped going, but all credit to him he chose to go back and repeat the first year of 6th form. It wan't plain sailing by any means but he got through the year and we are waiting for exam results.

    Its been been such a tough childhood which has affected the whole family. I undertsnad the strain with parners - we are trying to get to Relate but can't get out of the house often enough to sort it out.

    I am much better at fighting his corner and knocking on doors now. I wish I had been able to do more when he was younger as he would be in a much better place now. The last few weeks have been horrible as the boys brigade group he had been part of since he was 5 refused to take him on camp with two weeks notice , after another violent outburst, and he is not welcome back. My heeart bleeds for him as he is excluded from yet another part of the community. He has been suicidal and is on Fluoextine. The GP has doubled the dose to help him through these bad times.

    BUT still he keeps on getting up  after the world knocks him down and carries on ... long may that continue.

    So right about Mum's not getting 'me' time and the difficulties with holding down a job.

Reply
  • Oh what sad stories and they sound like my sons too. You must all feel knackered and let down by the system just like I do

    My son wasn't diagnosed until he was 17 - last year , after a period self harm and depression.

    We had two previous referrral to camhs  when he was 7 and again after a very bad run of exclusions at school . Violent outbusts that everyone thought were anger management issues . The finger always seems to point at Mum  but my conscience was clear - he has a twin brother with no such issues , so why blame parenting.

    The diagnostic test is so straight forward  and took 30 mins max. Even last year when they finally said they thought he had autism there was a 6 month waiting list.

    The depression made him miss so much colleg he eventually stopped going, but all credit to him he chose to go back and repeat the first year of 6th form. It wan't plain sailing by any means but he got through the year and we are waiting for exam results.

    Its been been such a tough childhood which has affected the whole family. I undertsnad the strain with parners - we are trying to get to Relate but can't get out of the house often enough to sort it out.

    I am much better at fighting his corner and knocking on doors now. I wish I had been able to do more when he was younger as he would be in a much better place now. The last few weeks have been horrible as the boys brigade group he had been part of since he was 5 refused to take him on camp with two weeks notice , after another violent outburst, and he is not welcome back. My heeart bleeds for him as he is excluded from yet another part of the community. He has been suicidal and is on Fluoextine. The GP has doubled the dose to help him through these bad times.

    BUT still he keeps on getting up  after the world knocks him down and carries on ... long may that continue.

    So right about Mum's not getting 'me' time and the difficulties with holding down a job.

Children
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