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,
P.S Sorry forgot to say, there are lots of ideas on here regarding how to help anxiety if you search on the community - you might know some of them already.Our daughter draws a lot and uses grown- up colouring books, has regular breaks when studying, gets enough exercise (when I encourage her!), decent diet etc. It is a bit of a steep learning curve to begin with but things will settle.
Re exams, we have got extra time for our duaghter's exam plus she can take some at home - all things you will need to consider when the dust settles a bit.
IPSEA are very good, for up to date info. Apart from that, just ask questions her and folk are glad to help.
Thanks Yorkshirelass! I am a bit worried that she's no longer going to school as all the 'experts' say that it is going to socially isolate her even more. She doesn't have any friends at school anyway apart from 2 boys who she speaks to when she sees them. She has had one of them round the house a few times but thats it. Not one other friend has ever asked her around to their house or come to ours. I also think that if she's struggled for the past 5 years at school which makes her more anxious - what difference is the final year going to be? It's heartbreaking that she has no one her own age to talk to. She's so desparate for a friend that will like her and accept her for who she is. She doesn't even know how she feels most of the time and can't even describe to me hows she feeling either so it does get frustraing for her. How does your daughter get on at school and home in terms of friends? Does she go out of the house? My daughter will go out with me or her dad but that's about it. x
I wouldn't worry too much about the 'experts' - until she feels happier and more confident in herself she will probably struggle with friends - but as long as you help her in these early stages she will find her way. My daughter attended some sessions at Camhs for teenagers with autism - until the money dried up and they ended! I have found there are groups for teens in our area ,which we are hoping to access over the summer. My daughter has two friends from primary who are really nice girls and accept my daughter for who she is - they meet every month for a short time (couple of hours like going to the cinema, McD's). I must admit the rest of the time I 'fill the gaps' with swimming, cinema, walks, going clothes shopping, cooking). At school my daughter loves certain subjects and is good at them - other less able kids recognise that and ask for her help - it raises my daughter's self esteem greatly. She has a 1 to 1 TA who is brilliant and 'fills in the gaps' at school - my daughter feels more comfortable with older people and I just accept that as she gets older she will learn to integrate better. She did have training (in primary) how to take turns, listen and how to ask relevent questions of other children - this helped greatly. Party invites were few and far between though- it hurt me too!
Have you been given some ideas as to how to help your daughter with regards to understanding her feelings? We have a 'ten minute worry session' when things are getting tense and talk about strategies to help. Sometimes my daughter will interupt me and just want to talk and talk, others she can't .....so I have to wait 'til she is ready - patience is the key I think. Has your daughter any pets or could you consider a pet .......getting a dog is a big responsibility, but we got a small dog and she has been a great comfort/ice-breaker at times and given my daughter independence walking it.
Does your daughter have special interests in animals, cooking or being with younger children - could she get involved somehow and start to develop social skills with your help? Maybe you will need to do this as a family to begin with. We have tried loads of things over the years - pony riding was good but interaction with the other girls was difficult.
Do you know how you are going to educate your daughter ? We opted against special school that was offered for us because it was too big a step, so we have a tutor led on-line study course set up. Has an Education and Health Plan been mentioned to you? I'm worried that you are not getting the right support and help which is your daughter's right - contact IPSEA as they know their stuff.
I'm also really upset that your daughter was sent 300 miles away from you - NAS - this shouldn't be happening should it?!!!
Don't be afraid to try a few things - you won't get everything right first time but as long as you keep moving forward inch by inch it will motivate you to keep on. Find out what your daughter's strengths are, as she will have them, and don't worry too much about the future. Also , I have found talking to others absolutely essential as being a parent at home can be really isolating - you need to get out and have some fun too! X
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