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????
I'm sitting here reading your stories and crying! I have joined today out of desperation trying to find someone to help my son. He is 16 years old and newly diagnosed with ASD. He had as what can only be described as a breakdown 3 years ago when he reached adolesence, and life has been a living nightmare ever since. He has become totally isolated, unable to attend school at all for the past 6 months and has become so anxious and depressed, afraid of other kids and people he doesn't know, that he is unable to leave the house most days. As a result I have had to give up my full time job and work just 2 days a week when my daughter can look after him as he cannot be left unattended. He has had involvement with CAMHS and has been offered therapy with a nurse but because I have been unable to get him to go for the appointments I was informed last week that there is little they can do for him, therefore will probably be discharged from the service.
He is having meltdowns on a daily basis due to the boredom and frustration he feels, smashing up the house, geting more and more aggressive, grabbing knives and threatening to kill himself. He wants to go out and have friends and do the things others his age are doing but his lack of confidence and his inability to cope in social situations has meant that he is unable to cope with the outside world.
We have a temporary social worker who told me that once diagnosed he would be passed on to the disability team in social services and we would be able to access more help, but as yet they aren't willing to take him on???
I am applying for funding to get him into a residential college which specialised in ASD and know I have a fight on my hands due to lack of funding but fight I will!!!!!!
If my boy is to have any sort of life then I feel this is the only thing out there fo him, he cannot go on the way he is and neither can I, there is no help and no support, I have been fighting for over 3 years. Social services, CAMHS, what a waste of time!!!!
Sorry to ramble on so much but it saddens me so much to watch my son suffer every day and to hear of so many others in the same situation or worse.
Our kids deserve the help and support to enable them to live a full and happy life just like any other child does. Unfortunately supportive and loving parents isn't always enough, much more needs to be done!!!!!!!
Stay strong Kitty xxxxxxxxxxxxx