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My 14yr old DD recently diagnosed with ASD but I dont know where to go now

amesishere

Hi. I'm new here and to ASD. I'll try to keep it brief. My daughter attended mainstream school without any problems. In fact she did well at school, had friends, hobbies etc. In Dec 2015 she was absent from school for about 3 weeks. This was the catalyst for her. She couldnt catch up (despite support) and began to experience anxiety & panic attacks. Her school tried to support but things got worse. She began self harming and having suicidal thoughts. She was admitted to hospital several times and referred to CAMHS. It was suggested that she may have ASD. I had never considered it before but I was unaware of the way girls mask it by mimicing their friends etc. It made sense of a lot of things and she now has been officially diagnosed. For 6 months we tried to keep her at the mainstream school until the SENCO advised that despite her best efforts she didn't feel that it was any longer apropraite for her She had been unable to go into any lessons and on most occasions could only manage to go in and work in the student support area for a couple of hours before needing to come home. My daughter was not keen but we visited one of the local hospital schools and she has attended there on a part time basis for around 6 weeks. There are still problems but she has 1-2-1 support now in each lesson. The school only has around 6 peoples in her year group and it seems to be a step forward. She has been assessed by CAMHS and i was given the official diagnosis about 4 weeks ago. We have been referred to a group for parents and a group for my daughter to attend although I dont really know what or when this will be. A follow up appointment with CAMHS is going to be arranged but again i dont know when this will be.

The SENCO at the mainstream school has said she is going to apply for statatory assessment for her but as far as I am aware she hasnt completed the form yet. She is very difficult to get hold of! I imagine this it as my daughter is no longer attending there although she is dual registered there and at the hospital school and also because my daughter would be due to move onto college after this summer (I may be too cynical but I suspect she knows if she stalls for a little while longer it wont be her problem)

As I see it the main things that I need to focus on are

She is due to start her GCSE's in September. Should i be looking for a specialist school or can she stay at hospital school. The college I applied to which would have the natural progression for her have said that she wouldnt cope there. How do I go about trying to get a place at a specialist autism school?

Because she only attends school - one full day and 2 half days. I have had to reduce my hours at work from 37 to 22. I cant leave her at home on her own because its not safe. She has been admitted to hospital for self harm and an attempted overdose. She doesn't sleep very well. She is awake most of the night, most nights and she also gets up in the night and start cooking pancakes or pasta (she's reasonably safe i think but it worries me and i wake frequently and often am awake with her all night. When i discuss things with her she doesnt see the risk or she'll agree with me and as soon as its said, she has moved on and she recalls what was said differently or doesnt think it matters.

I had 3 short periods of abscence last year from work and one of 5 months when things with my daughter were at there worst, consequently i have been issued a final written warning regarding my attendance. If i was to have any sick leave in the next year its likely i would be dismissed. I'm a single parent and have another child as well. Is there any support available? I have a mortgage to pay so its not rented or council property where I imagine if I did lose my job I would get some help.

Sorry its so long. I would be so greatful for any advice or anyones experiences that may help.

Parents

  • I haven't brought up a daughter with aspergers but I have been one (albeit undiagnosed at the time).  I have also worked with children who have special educational needs and have an NVQ in learning support. I'm no expert but I'll give my observations in the hope they may be of some help.

    I think the lack of sleep for both of you needs to be the first thing to tackle. You might need to speak to a GP to get this resolved, but you'll both feel better if you sleep properly.

    You say she often cooks in the night - can you identify why? is she hungry, and if so is this because she doesn't eat properly during the day? Does she have a need to do something she enjoys when she's on her own in order to relax?

    If cooking is one of her interests,  perhaps you could share responsibility for planning and cooking meals with her, giving her a chance to give input about what she wants to cook and eat. This will help give her some control over her life, which we aspies really need. 

    I hope you don't mind if I use the term aspie - I find it more user friendly than ASD or aspergers syndrome, which sound a bit like a mental illness that can be cured, which it isn't - it's a state of being. 

    Anyway, we aspies are stressed by changes and do better with routine. So if it's possible for your daughter to stay at the hospital school maybe that would be best for her, as it sounds like she is making progress with the 1 2 1 support. I know it's natural for you to want her to do well in GCSEs but it might not be possible for her at this stage of her life to do well academically.  I didn't, but I've gained useful NVQ qualifications since leaving school and have studied with open university to diploma level - I've found I succeed more with distance learning, and course assessments rather than formal exams.

    With reference to your job, is there anyone else she can spend time with during the week to give you a break?  A grandparent or aunt perhaps? You should be able to get advice from the local council about what happens if you lose your job and can't pay the mortgage - hopefully it won't come to that but it can be reassuring to know. The shelter charity website or citizens advice may also be helpful. 

    Everyone does better when they have high self esteem,  so focus on your daughters strengths and talents as well as trying to help with her problems. This website: taniaannmarshall.wordpress.com may be one you can look at together - it identifies the strengths as well as the problems that female aspies generally have. Although it focuses on adults,  it may help you both to learn about this as she grows towards adulthood so you both know what to expect. 

    All the best 

    Pixie 

Reply

  • I haven't brought up a daughter with aspergers but I have been one (albeit undiagnosed at the time).  I have also worked with children who have special educational needs and have an NVQ in learning support. I'm no expert but I'll give my observations in the hope they may be of some help.

    I think the lack of sleep for both of you needs to be the first thing to tackle. You might need to speak to a GP to get this resolved, but you'll both feel better if you sleep properly.

    You say she often cooks in the night - can you identify why? is she hungry, and if so is this because she doesn't eat properly during the day? Does she have a need to do something she enjoys when she's on her own in order to relax?

    If cooking is one of her interests,  perhaps you could share responsibility for planning and cooking meals with her, giving her a chance to give input about what she wants to cook and eat. This will help give her some control over her life, which we aspies really need. 

    I hope you don't mind if I use the term aspie - I find it more user friendly than ASD or aspergers syndrome, which sound a bit like a mental illness that can be cured, which it isn't - it's a state of being. 

    Anyway, we aspies are stressed by changes and do better with routine. So if it's possible for your daughter to stay at the hospital school maybe that would be best for her, as it sounds like she is making progress with the 1 2 1 support. I know it's natural for you to want her to do well in GCSEs but it might not be possible for her at this stage of her life to do well academically.  I didn't, but I've gained useful NVQ qualifications since leaving school and have studied with open university to diploma level - I've found I succeed more with distance learning, and course assessments rather than formal exams.

    With reference to your job, is there anyone else she can spend time with during the week to give you a break?  A grandparent or aunt perhaps? You should be able to get advice from the local council about what happens if you lose your job and can't pay the mortgage - hopefully it won't come to that but it can be reassuring to know. The shelter charity website or citizens advice may also be helpful. 

    Everyone does better when they have high self esteem,  so focus on your daughters strengths and talents as well as trying to help with her problems. This website: taniaannmarshall.wordpress.com may be one you can look at together - it identifies the strengths as well as the problems that female aspies generally have. Although it focuses on adults,  it may help you both to learn about this as she grows towards adulthood so you both know what to expect. 

    All the best 

    Pixie 

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