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 everyone i am just new to this site
I have read so much on this after being recommended to join by my daughters autisim nurse. I must say it has kept me going these past few months.
This is our story:
Since the day i found out i was pregnant with my first born daughter it was both wonderful and extremely scary. I went through all the normal stuff tests and scans but 1 night i was phoned by the doctor to ask me to come straight to the hospital the next day some of my blood tests where a bit concerning. I went to the hospital the next day with my partner and we were told the blood test that they do for Down syndrome came back positive. The next fews months where crazy with scans because i refused the Amniocentesis. Everything was normal and after a 22 hour labour our princess was here.
Everything was brilliant with a few hiccups, couldn't suckle at first but did eventually get it. She was growing great and life was wonderful. When my daughter was old enough for tummy time i did my best but unfortunately she would become very upset and panicked. She was a bum shuffler and a late walker.
I started to become worried she couldnt hear as sometimes she wouldnt hear us call her. Tests where done and i was told after months of nothing that she was just an ignorant child. Then came constant ear infections 1 after the other. She was reffered to our local childrens hospital after constant antibiotics and then they decided to try gromits which helped with the build up of wax.
Everything seemed great and we started to enjoy our little girl again. When she was 16 months old i found out i was pregnant again and 6 days before her 2nd birthday her little sister/best freind was born. After a rocky start they became best freinds and inseprable.
When she started nursery at 3 years old things changed she became a violent little girl. She would attack other kids for what we thought the slightest litte thing. No one would leave their kids unattended around her which broke our hearts. The violence did stop when she went to primary school.
Potty training was hard as she wouldn't poo and i couldnt understand why. She eventually after a couple of years getting comfortable to an extent at doing it out of the nappy, but this wasn't the same for peeing as to this day my not so little girl still bed wets and day time wets. She has went through all sorts of tests and treatments but nothing as of yet has worked.
At around about 3 she started to do as what we call it flap, she would tuck her chin into her left shoulder and shake while making a unusual sound. She would do this constantly normally when she was excited and she loved music. Family members would comment on this and after a while i thought maybe this is a little strange. I saw my health visitor and she said it was perfectly normal, so we left it. Everyone got used to it.
Primary school was rocky to start with, as leaving me was really hard for her to handle but she did and the first few years went great. When she started primary 5 she was 9 years old and this is when our problems started. Kids would laugh at her for her excietment tics. She started to struggle maintaining friendships and became a loner. Her unusual tics became the talk of the school kids would taunt her. She learmed to stop doing this and adjusted it to jumping up and down on the spot and flapping her arms up and down.
Primary 6 i was constantly at the school because she was being picked on but the school handled it and it seemed to have improved.
Primary 7 was when she started to lash out other kids and i had to go to the school on numerous occassions. My daughter took things very personally with other peers and teachers. We felt like everything was starting to crumble i took her to our Gp he reffered her to Camhs who told us she had anxiety due to her wetting problems and being the oldest of 5. She started to see a young persons councillor. Nothing changed!!
She started high school and went her seperate ways from her primary peers. Everything was going great though she will not go on the local bus to school thankfully my neighbour (whom i have known since i was in high school) has a daughter in high school and offered to take her to and from school.
Everything was going great but after 6 months of high school until a girl and she had a minor confrontation. She as of that day has hated school she has locked herself in her room refuses to have family time. She can't tollerate her younger brothers and sisters. No one can touch her things, say anything to her or she lashes out.
She came home from school one day and told her father and i that she didn't feel normal. Our world came crumbling down we felt helpless i again took her to the GP who reffered her back to Camhs. She has now being seeing an autisim nurse and things are slowly being pieced together. We are trying CBT and going at her pace as it takes her a while to warm up to strange people.
Her nurse has arranged for her to have the ADOS test and she has been referred to OT. Its a long process and my heart is breaking for her as she already attends Nucternal Enuresis for her night time bed wetting, daytime wetting clinic as this was just found out earlier this year also and she sees her councillor who she has started to speak to.
My husband and i have now been riddled with guilt as surely we should have noticed something just wasn't right and we should have pushed for someone to listen. We have been told that she more or likely has ASD along with anxiety, incontenance problems and the list justb seems to be getting bigger and bigger.
So this is our story, sorry for going looks like so much when actually it doesn't even cover half it.
Feel free to comment i will look forward to other peoples experiences and views.
Kelly x x