Convinced but can't get diagnosis

Hi.

I am new to this forum and was after some advice really. My daughter is 14 and is very affected by anxiety. I have always recognised some differences in her from the 'norm', since the day she was born (she had extreme separation anxiety and could not go to sleep on her own till she was 2 years old, amongst other things). However, she is an extremely bright girl and has never had any difficulties at school. She is at the top of the top sets at her school and has never misbehaved. The structure of school seems to really suit her and all her (many) behavioural difficulties have always happened at home. 

I had a lot of particular difficulties with her when she was a toddler, but I tried to manage them on my own, probably because at the time I thought Autism and Aspergers were learning disabilities, and apart from the emotional and social aspects she was a very clever kid. I believed she didn't have ADHD too, having read up on it. So I tried to deal with her the best I could.

Around the time she was in junior school things were getting much worse. I had recognised she had a real social awkwardness and she was having some major issues with other girls in the school to the point that she seemed to only have one friend and she was obsessive about her. If that friend was not at school she would have a terrible day. As it was I used to collect her from school and she would have been so wound up during the school day her emotions would spill out on the way home, leaving her distraught by the time we got home.I started to realise, too that she had always had various obsessions which included some compulsive behaviour, she was very literal with speech and action, she didn't like to look strangers in the eye, she had difficulty speaking to people (especially adults, including teachers), she was anxious about noisy environments and particular about things she touched that 'felt funny' (including always being fairly particular about clothing choices). She didn't seem to be like the other girls at school, or her younger sister.  At that time I started to talk to other mums who had similar problems with their (ASD/Aspergers) children and they said that my daughter sounded just like theirs, so I decided to seek medical assitance for her.

She took a lot of convincing that she could do with some help, because she couldn't cope with the idea that she wasn't 'perfect' - one of her issues (she has impossibly high standards for herself and a very poor self-image) but I took her to the doctor and was referred to the child psychologist (who thought her problems were all to do with my recent divorce - despite her having ALWAYS had them, since birth, and she was 11 years old!) who then referred her to the Child and Adolescent Mental Health Service. It was very difficult getting support from her school as they didn't think she had a problem, being that she was their star pupil who just sat and got on with her work and was never difficult at school (even though she spent breaks and lunchtimes just walking round and round the playground on her own). The mental health consultant did an assessment on her for ASD and ADHD and concluded after two meetings that she just had 'high anxiety' and could do with some anger management techniques. He suggested that she write a diary keeping a record of all her meltdowns (and there were many) and the reasons for them, and punch a punching bag for 45 minutes whenever she felt the 'red mist' descending. He gave us a sheet suggesting some similarly inappropriate things to do to deal with her feelings and, although, he made a follow-up appointment for three months later, we felt he wasn't really interested in giving her the help she needed.

My daughter walked out of the office and flatly refused to do any of the things he recommended. She couldn't cope with the idea of writing down her 'low points' because her anxiety and poor self-image would have only got worse doing that, and the idea of a 'ladylike' (that's how she saw herself) 11 year old girl punching a punching bag was insane. 

She refused to go to the follow-up appointment and we have not been back since. However, things have not really improved that much and I am really worried about the future. I am all but convinced she has some form of ASD/Aspergers from talking to many people who have experience, either with their own condition, are parents of children like my daughter, or work with children like her, and yet I am struggling to convince her to go and get a second opinion. The last three years I have dealt with her issues by assuming she has the condition and managing her anxiety and her behaviour accordingly. It has been generally okay and she has coped better than she had before. However things at school are now kicking up a gear as she is entering her GCSE studies and stressing out big-time. I am really worried that she is not going to be able to cope with exams, deadlines (she has a BIG problem with time management) and pressure. 

I really want to be able to take her for a second opinion but (assuming I manage to convince her it will be a good idea) I don't know how to go about it. I guess I am also needing to know if I am doing the right thing in pursuing a diagnosis for her, or if those of you who are experienced with this think I am barking up the wrong tree. I would really appreciate some constructive advice and support.

Thanks

Parents
  • I also have a daughter who is currently waiting (after almost a year) to see CAMHS.

    She is now 12 and her behaviour is almost out of control.  I had her at CAMHS when she was 8 because I went to the doctors with my concerns about her then.  After a few appointments, they told me that she was too young for them to get an accurate diagnosis, so we just got on with things.  However, last year, my daughter's school called me in for a meeting to discuss her rapidly declining behaviour and asked me if it was ok to refer her to various "professionals" for help with her behaviour. As you can imagine, I was delighted to agree to this!

    We are now a year on, her behaviour in school has gotten so bad that she has been excluded once already.  She runs away from class if she feels angry or threatened, bangs her head off things or pulls her hair and shouts back at the teachers.  Despite being exceptionally bright, she is refusing to do tasks set out for her, and often destroying any work she does do.

    At home, she will just refuse to do anything - I have to set out her clothes, direct her to get washed/dressed etc or she just wouldnt.  She has no organisational skills at all, has no concept of personal hygiene, and has no social skills.  She is becoming more and more aggressive and will run away from home or hurt herself if you say anything she doesnt like. 

    She has been assigned a key worker from Social Work who is supposed to be supporting her and our family too.  On her first visit, after meeting me and my husband and son, she told us that there wasn't much she could do for us as she wasn't trained to deal with any mental health issues, but would we like parenting classes!!!

    Having now had several meetings with the school and key worker, we are still no further forward, I have been told that my daughter may not be seen by CAMHS by June and she is supposed to go to high school this year.  I know for a fact that she is not going to cope, and even the school are starting to agree.  When I try to chase up CAMHS, I feel that I am being given the "Cover Our Asses" excuses, and I am at my wits end.  I feel that everyone is losing sight of the fact that I have a very scared and confused daughter that can't control her emotions, and is a danger to herself at the moment. 

    I am sorry for rattling on, but if anyone has any suggestions on anything that we can do, I would be really grateful.

    :)

Reply
  • I also have a daughter who is currently waiting (after almost a year) to see CAMHS.

    She is now 12 and her behaviour is almost out of control.  I had her at CAMHS when she was 8 because I went to the doctors with my concerns about her then.  After a few appointments, they told me that she was too young for them to get an accurate diagnosis, so we just got on with things.  However, last year, my daughter's school called me in for a meeting to discuss her rapidly declining behaviour and asked me if it was ok to refer her to various "professionals" for help with her behaviour. As you can imagine, I was delighted to agree to this!

    We are now a year on, her behaviour in school has gotten so bad that she has been excluded once already.  She runs away from class if she feels angry or threatened, bangs her head off things or pulls her hair and shouts back at the teachers.  Despite being exceptionally bright, she is refusing to do tasks set out for her, and often destroying any work she does do.

    At home, she will just refuse to do anything - I have to set out her clothes, direct her to get washed/dressed etc or she just wouldnt.  She has no organisational skills at all, has no concept of personal hygiene, and has no social skills.  She is becoming more and more aggressive and will run away from home or hurt herself if you say anything she doesnt like. 

    She has been assigned a key worker from Social Work who is supposed to be supporting her and our family too.  On her first visit, after meeting me and my husband and son, she told us that there wasn't much she could do for us as she wasn't trained to deal with any mental health issues, but would we like parenting classes!!!

    Having now had several meetings with the school and key worker, we are still no further forward, I have been told that my daughter may not be seen by CAMHS by June and she is supposed to go to high school this year.  I know for a fact that she is not going to cope, and even the school are starting to agree.  When I try to chase up CAMHS, I feel that I am being given the "Cover Our Asses" excuses, and I am at my wits end.  I feel that everyone is losing sight of the fact that I have a very scared and confused daughter that can't control her emotions, and is a danger to herself at the moment. 

    I am sorry for rattling on, but if anyone has any suggestions on anything that we can do, I would be really grateful.

    :)

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