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????
Hello Kittypookie (cool name!),
Wow, having read your post I could see many similarities to mine. Not so much in a late diagnosis, but the lack of help from CAMHS and other services. I have been begging for help for 14yrs and still haven't found the support we so desperately need at times. I will tell you a little bit about what happened to us (I will try to keep it short.)
I knew from a very early age my son displayed some autistic behaviours. At the age of 18mths I mentioned it to my health visitor who basically told me not to be so silly, he's too young and to stop worrying and enjoy him. This was where my fight with the authorities started. Over the next few years we were sent to several different professionals, doctors, therapists, specialists etc. No one could help and just said he was somewhere on the autistic spectrum but we were offered no help as we were seen to be 'coping,'
Education was a separate struggle too. Exclusion after exclusion. Then the depression and self harming set in with my son when he was about 8. We were referred to a new CAMHS (we had moved areas) and I was told my parenting skills were too over the top and he was being spoilt by his maternal grandmother. However, he was prescribed antidepressents which helped.
This went on for few years. Back and forth to CAMHS who eventually diagnosed him with Asperger's syndrome when he was 10. (Strangely enough, this is what I had been telling them since he was 18mths!) Armed with this diagnosis I went all out! I took out a massive formal complaint against CAMHS, I pushed for an educational statement and fought tooth and nail to get him into an independent special school for students with Asperger's and HF autism. He's been there for 3 yrs now.
He is now 14 and still on antidepressents. He copes most of the time but still has huge meltdowns and is very aggressive and violent. He will abscond if anxious. The police know our name quite well now! He still gets suicidal thoughts and adolescence isn't helping the matter! I went back to my GP begging for help again and guess what he said, the only people who can help are CAMHS. I told him about our complaint and he was very sorry but said resources are stretched and unless we go private, there is no one available.
During all this he has had close contact with his father which has given me a break, but now my 8yr relationship with my partner is at crisis point. My mother (my rock) died very suddenly, my dad needs alot of help, I work in a school and somedays I feel like running away too.
Your story made me feel very sad for you, but can you find a way forward with this diagnosis to improve your lives? I think you've done a fantastic job. Not many people could cope with what we go through.
I'm in Surrey btw.x