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!

  • Hi Mamma Bear,

    i just typed a reply and it disappeared so will try again!

    My daughter is also 15 and recently diagnosed (at her own request).

    She too had a breakdown and some really serious mental health issues. Fortunately we were able to get help for her quickly and she is now on Sertraline which helps so much with the anxiety.

    School have been great in supporting reintegration and I am hopeful that she will complete year 11 next year and get her GCSEs.

    Hopefully your daughter will be able to regroup and recover at home while still achieving her GCSEs online. She will then be in a better place to figure out the best next step. You may still be able to get an EHCP to help her at the next stage as they are valid right up to age 25.

    Best wishes,

    Alison

  • Hi it's nice to hear so many people going through the same or very similar things I thought I was on my own . We been fighting to get where we are now it all takes so long and by time anything is put in place kids are grown up and have nothing I'm worried for my daughter like you don't see her going on to do college or anything now my daughter is happy at home doing what she likes  

  • Hi there nice to hear from you sounds like your up the wall at the moment.

    my daughter has been at home since last December as due to an error on the schools behalf she refused. I then basically had to fight for an outcome. I found the school extremely unhelpful and very stressful.

    meg is relaxed and chilled at home and we are currently waiting for an ehcp not that o can see Megan attending college in the future. It was school that was causing her distress now that’s been taken away

  • Hi im Steph and in very similar way right now with my 15 year old daughter Emily at min she's very down not happy and has selfharmed finds it hard and difficult to go school it's just to much for her school been very understanding and now in progress of meetings and things to get her in to a special school for her last year at school she has a ehcp that was done this year she's on waiting list for cams not sure how long that going to take and if she will even be diagnosed we had very hard last few years trying to get where we are now . I could not help but when reading your article it sounded like my daughter we have few different things but basically the same my daughter has  ehcp yours don't but you have the diagnosis we don't but your daughter sounds just like mine and they the same age anyway I would love to hear back from you kind regards Steph and Emily xx

  • Hi I'm Vanessa. My daughter always seemed different or misbehaved. I found it frustrating to deal with the doctors and everyone else saying it was me just being a worry wart mother. They said she was just being a kid and that it ran in the family on her dad's side to misbehave. My older daughter was completely opposite of her. Stephanie my oldest thrived in school and obeyed me. Stacie hated school and disobeyed my every word with a smile. She was the baby and daddy's little girl so she got away with murder. I didn't understand the differences between them when i raised them both the same. After 11 years of life and its ups and downs i was divorced and in a new relationship and Stacie was no longer daddy's little girl because he decided to go downhill with an addiction causing him to forget Stacie she started puberty and became depressed which spiraled into bad times. After an accidental suicide attempt....she claims she doesn't know how it all happened....she was hospitalized and diagnosed with psychosis, bi-polar, anxiety and OCD. Initially it was schizophrenia due to intrusive thoughts and that she didn't remember the incident as well as her rapid mood changes. Later it came to me the methods used on her little brother who regressed at 2 years old seemed to work with Stacie as well. However it took a bit longer to realize she was possibly autistic. After making her IEP at school aware and testing that was confirmed and it was shocking. Yet not. I always knew something was different but everyone said she was fine. I didn't want to believe she was crazy and i searched for months to get the doctors to listen to me that something else was to blame. A positive ANA confirms she may have an autoimmune disorder. Stacie is the Stacie she always was but now it all makes more sense and regional center is our next step in this chapter of our lives. I wonder how much more bad will come. Will she always struggle now? Like she had always struggled....except now i know she needed help and i feel horrible about it all. Horrible i was not educated enough to realize she needed help. I just had no way to knowing when the doctors all said she was fine and didn't listen when i complained she was a handful....they didn't understand cuz all kids are and i couldn't explain it better without sounding crazy.

  • Hi there . 

    I’ve just read your post and thank you for sharing this . I could of been reading about my own daughter who has displayed all of those symptoms . High levels of anxiety . School avoidance . Self harm . Isolation etc . The past 4 years have been dreadful . Finally after all these years she has got a diagnosis . I just wish this could of happened sooner . That could of prevented so many problems . 

    Xx

  • Dear twin mum,

    I'm sorry to hear about the difficulties that your daughter and family are experiencing.  This must be a very stressful time for you all.

    If you need any support, information or advice regarding the diagnosis process, please do contact our Helpline.  You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). The Helpline is very busy so it may take a couple of attempts before you get through to speak to an advisor.

    The following link has further information: http://www.autism.org.uk/services/helplines/main.aspx

    We also have a parent to parent service providing emotional support to parents and carers of children or adults with autism.  The details are here: http://www.autism.org.uk/services/helplines/parent-to-parent.aspx.

    If you are really concerned for your daughter's wellbeing you may also like to contact your local safeguarding team via your local authority to get further support.

    I do hope the situation improves for you all soon and that this is of some help.

    Regards,

    Kerri-Mod

  • Hi Sarah. My name is Rachel. My twin daughter is also 15 years old and she has really struggled with severe anxiety for the last couple of years, and recently slipped into depression. She joined Healthy Young Minds early this year at our local hospital. She is currently undergoing a speech and language assessment and is on the waiting list for an ADOS (autistic assessment).

    My daughter use to have a best friend, but a couple of years ago decided didn't want to be friends anymore and therefore stopped talking to her. She didn't understand why there would be a problem in just not speaking to a friend anymore. Since then she has become isolated spending all her spare time in her bedroom.  Then less than two weeks ago her depression seemed to take over. She said she was ignored at school and didn't feel human anymore. Last weekend she sat on the floor, didn't move from the spot and wouldn't eat, drink or talk on "shut down". Advised to get an emergency ambulance. Was 9 hours in A and E discharged eventually after sitting up all night talking to a couple of child phycologists. She would only communicate by writing down (not seen this behaviour before). When asked she wrote down that she didn't want to be here anymore but didn't have a plan. When we got her home she went to sleep, but when woke she refused food and drink and just lied motionless on her bed not talking. I phoned the emergency doctor who told us to go to A and E again. My husband drove her in this time. After 4 hours and checking all bloods and blood pressure she was discharged. 

    The most disturbing behaviour so far I have seen was this Tuesday night. She had a college interview, as she is due to start college next year. She insisted in going in on her own, and then wouldn't say how it went. When she got home she was very agitated. About 10pm we were ready for bed and she was sitting on floor. I'd gone in to talk to her but she started saying "Don't act like were close, because we're not. You don't know me". When I turned away (trying not to react although very upsetting) she said "You're being passive aggressive now". It was like she was picking an argument, so I walked away. Then she started to stand disturbingly over the top of the stairs. She then started banging her glass notice board really hard, banging her head against the wall, then screaming "Get out" in a really alarming way. She also started crying and then laughing and then whispering in her breath. All I could think was that it looked like a breakdown, never seen anything like it before. Called 111, they heard her screaming in the background. I said she was a danger to herself. They first sent an paramedic in a car, who turned up with two police men for his security! Later an emergency ambulance turned up. By the time the emergency services turned up, which was around one and a half hours of her screaming and acting in a disturbing way, she was back on "shut down mode". She was standing in her room not speaking or moving. Managed to get her in the ambulance and back to A and E (third time in as many days). My husband went in the ambulance with her, so I would stay with her sister at home who had got out of bed and was pacing the house. I got a call from my husband to collect them both at around 7am. My daughter was back to normal and insisted she wanted to go into school, although had not had any sleep, which she did.

    Since then we have had a couple of meetings with different consultants. It was decided that she should try anti depressent sertraline, cognitive behavioural therapy and counselling. She has taken her first tablet today, but were told it could 4 -6 weeks before we notice any difference.

    We feel maybe the impact of leaving secondary school is having a big impact on her and could be the main reason for this new behaviour. We are still waiting for the autistic assessment, but her behaviour is confusing the medical profession somewhat.

    My heart goes out to you. I feel like I know what you are going through, and how it takes its toll on your own health. You've made a really big decision to home school and I really hope it all goes well for you. It sounds like you are doing all the right things and that you are a very supportive parent.

    Good Luck.

    Rachel

  • 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

  • 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 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

  • 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 

  • 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

  • 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

  • Hi MB,

    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

  • 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

  • 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 helpSmile.

  • 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,

    Y.L