15 Year old daughter recently diagnosed with ASD

Hi all

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!

  • Our daughter felt the same about her sessions at Camhs - I think she managed 3 sessions then didn't want any more! Having structured group work with other teens worked better but they fizzled out due to lack of funds.

    I think you are 'spot on' re our girls giving up on things w/o understanding the root cause - hopefully we can adjust things better to suit their needs - it just takes a little time to learn and adapt.

    When things were really hard last year I contacted a charity and they sent a support worker who had first hand experience of autism - I know she will advocate for me if I need help in supporting my daughter at school - or I can e mail her with worries/ questions - it's knowing whom to trust.

    Things will come right for you - but take your time - the posts on here are really helpful/informative. Take care Y/L x

  • Thank you both so much I have waited so long to get my daughter diagnosed ,although now she is I feel worried and relieved at the time time does that make any sense? I am a single parent and feel quiet isolated she has a statement now after trying since she was seven she is very temperamental and we have one good day then 20 difficuit ones this is my first day on here so would love a comment back thank you so much 

  • Hi Sallywendy,

    Welcome to the site!

    I know that feeling all too well! The future, I'm sure, will be a lot brighter for your daughter knowing that she has a diagnosis and statement - just try to build up a good relationship with your daughter's Senco and make sure that she is getting the support she may need during exams, lunchbreaks, trips out etc. 

    Understanding your daughter's condition will help her massively and make sure your support network is strong too.There are groups for teens/parents, but you may have to search around a bit. I find holiday times the hardest, so see if you can find any groups operating over the summer. Where I live, trampolining seems to be the 'in' thing- meant to be good for anxiety - might be worth a try. 

    Anyway, it's good to hear from you! Post any questions you want and folk will help you out. Take care x

  • Hi, i would just like to say, if your daughters prefer the compalny of older people, it may be a good idea of enabling them to have relationships on that level. I too never got alongwith people my age, spending most school breacks in one of the smaller teachers rooms talking to the 60-70+ year old teachers rather than my classmates, and if i had time after school, i often spent it sitting down having a cup of tea with the old lady next door who was over 80 at the time (she was 89 when we moved away, unfortunately forgot to ask any contact details and am not much of a fan of normal post), and those were the very few moments i could unwind. Same with playing with very little children. I think the difference is, communication with both is so much easyer, as they themselves often come around looking for contact, generally talk about easy subjects where your main role is to be a listener(ie children want to show what they can do or talk about recent events, older people generally about their past), are generally much, MUCH less oppininated/judgmental, etc etc. unfortunately never got diagnosed during schooltime despite all my difficulties, only got it a few months ago, and am 25 now, so long out of school. But i too was often carted about, having to see loads od psychologists and psichriatists, but besides the school psychologist who i couldnt get away from, i often declined to go back after an appointment or two, because they do not help whatsoever. Just ask you loads of difficult questions and keep picking on old hurtful topics over and over again, so you always end up going home much more upset than you were when you went there.

  • Hi there I only joined yesterday very similar to you. My daughter is 14 was only diagnosed in June this year with asd. Like you last year I was close to a nervous breakdown. She swapped schools it was too much for her but the professionals saw her at her worst. She’s more settled now but every morning is a battle. It is hard work not a lot of support for you. 

    Nice to know other people going through the same