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!
Hi Mamma Bear,
Welcome! You have come to a great site that will help no end!
Your story just jumped out at me because we have been through the same- 15 year old daughter, incorrectly diagnosed, which led to us handling her incorrectly which in turn led to almost mental breakdown. Camhs were slow.... I was lacking in confidence, husband was burned-out with the stress and had a breakdown, partly due to the situation..........
Our daughter 'broke down' in Year 9 and we were being handled by people (at school) who didn't properly understand autism in girls. My reaction was to read everything on the subject and read Tony Attwood's 'The Complete Guide to Aspergers ' twice so that I could advocate effectively. I am now attending every available course,being run by charities in our area, so that I can be one step ahead.
Yes, we have good, bad, awful days. We now listen to our daughter, watch for signs of stress, keep routine in the family etc. Our daughter is taught on-line for core subjects, has a tutor that visits our house and she just attends school for 3 other subjects. If she needs a day off school for sleeping/chilling we don't worry any more and just accept. It may take her slightly longer than her peers to get to where they are ......but who cares.....it soesn't matter as long as she is happy..! Just let your daughter find her own level and she will slowly but surely build up her confidence........just don't rush it and ignore those who haven't a clue!
I would really advise you to get peer support with a group of like minded parents - people who will listen and encourage. I understand , as will others, how angry you must be feeling with the lack of help/understanding in the past - I'm now trying to use my anger to motivate me for the future and to never let things get as bad as they have been! I'm sure with time you will too!
Very best wishes,