Published on 12, July, 2020
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????
Hi All
having read all of your posts, I am amazed at how much help is NOT out there! I thought It was just us...we have suffered all of the above. It's exhausting, demoralising and highly stressful I feel for you all but am so glad I found your poSts!
since our daughter started secondary school our lives have been turned upside down!
CAMHS after CAHMS after freaking CAHMS we even tried private counselling due to the initial waiting time of over a year!
our daughter at the age of 11 first started to refuse to go to school, she was so distressed ....the school eventually helped with smaller class and cut down her hours. She could not manage the school bus so as working parents we had to juggle school runs and cut working hours. even with all of this our child still could not cope, we discovered she had started self harming, was suicidal and even ran away, we struggled on with CAHMS prescribing short courses of CBT and looking for triggers for the behaviour. As a parent I personally felt blamed, the advice (for my inadequacies) from school and CAHMS I took on board but nothing seemed to help. We have been back and forth from GP to CAHMS, me usually in tears, until we eventually thought if it's school and the social pressures then why are we making ourselves do this!
our daughter now 16 and removed from school as the stress was too much for us all, we are now home schooling, probably inadequately! The LEA are satisfied that we are doing our best in difficult circumstances, but as a result my daughter is even more withdrawn from society, although happier, she is not sitting GCSEs although very bright and a talented artist, it's not ideal. we now await a community paediatrician appointment...as a bit of expert help and advice would be great.
I just want my brilliant young daughter to get the best out of life, we are not afraid to say we need help, we've been asking for a long time now I just hope this appointment comes soon and that they do help us.
I am wondering what ELCAS is now cazz1968...back to google!