My name is Sarah. I have a beautiful daughter who has gone through some extremely hard times during the past 5 years. Three months ago she was diagnosed with ASD at 15 years old. She was misdiagnosed 5 years ago by CAMHS after years of trying to get assessed. I feel very angry that the past 5 years could have been avoided or have at least not been as awful if she had had the right diagnosis and help and support back then. She is depressed, highly anxious, has self-harmed and recently spent 3 months in a high dependancy mental health unit (300 miles away from home) where she was finally diagnosed! As those of you in a similar situation know, we have good days and bad days and absolutely terrible days. The time that my daughter was in hospital was the worse time of my life and I almost had a breakdown with the stress and worry of it all. She is back home now and has tried to go back to school, however, she just found it too difficult and I will not, under any circumstances, let her get that ill again so one of us is going to give up work so she can be schooled online for her final year. Very big decision but it's too late to get her a Statement of Needs now which would have greatly helped 5 years ago and opened up so many doors for her. Her school have been OK but unless you have personal experience, you have no idea how the tiniest thing can make all the difference to her feeling safe and less anxious whilst there.
I joined this site as I haven't yet spoken to other parents who are going through similar situations and I think it would help to make friends and support each other so we don't feel like the only person in the world going through these hard times.
I look forward to making new friends!
My daughter had some Psychotherapy sessions and CBT sessions at CAMHS before her diagnosis which didn't go well at all. She hated all the questionning and now won't go back cause she says it will be more of the same.
My daughter feels more comfortable with younger children or adults too so I'm hoping that as she gets a bit older her confidence will increase. My local Council have an Autism adviser who seems to be the only person who really knows her stuff. Thankfully she is coming round in a few weeks to see us separately and will hopefully give us some suggestions on how she can recognise her feelings. We do have a dog and since getting out of hospital she walks him with her dad almost every day which is good as she never left the house before other than to go to school.
She did a lot of stuff when she was younger like horse riding, trampolining and volunteered at a local animal shelter with her dad but seems to give up on things really easily. We obviosuly didn't know that socialising and communicating was such an issue back then. We thought she was just really sensitive and shy.
We didn't have the option of a special school as she hasn't got a Statement and was told that with less than a year left - it's too late to get one now. The school has sorted tutor-led online studying for her GCSE's which will start in a few weeks. Until then someone comes to the house 3 times a week for the compulsory lessons. I've never heard of IPSEA - I'll look into it - thanks!
I am going to attend a parents group soon so will hopefully meet others there too which will be fab. Thanks for all your help. x