I cannot cope with my daughter anymore

[mumto3xxx]

my 23 year old daughter has aspergers and Tourette’s and her behaviour is awful and I am really struggling to cope! She lives at home with me and her dad and our dogs (we have two older daughters also but they have moved out). It’s quite unlikely that she will ever live independently. She is always talking (a lot of the things she says don’t make sense) and needs a lot of supervising. She constantly touches hot things in the kitchen and burns herself and constantly does things that I have asked her not to do (such as feeding the dogs jam or syrup and chasing the dogs around the house) and she hardly sleeps so we’re up a lot of the night with her. She cannot organise herself and it takes her hours to get ready to go anywhere because she is constantly distracted and goes off task. She has no concept of danger and will step out in the road a lot when cars are coming. She has worked two mornings a week in a small shop for the last 5 years so that’s the only real break I get from her apart from when she goes to her tourettes group twice a month. She can be rude and argues a lot with absolutely everybody. Her sisters hardly ever come home as a result of this. She’ll stand outside jumping up and down at the window waving to us for ages while we’re trying to read or watch tv. Also she is so difficult with her food and will only eat a small range of foods (she makes herself sick a lot after eating). She is currently with the mental health team and sees a cpn every two weeks but they are not really offering any support and they criticise me a lot saying that she hasn’t been parented well. I’m really not sure what to do anymore and would really appreciate any advice from anyone who has been through anything similar. I love my daughter so much but I just feel desperate now!

I’m afraid I have no advice OP but I just wanted to say that it is appalling that the MH team criticised you for your parenting of your DD. You sound like a very loving and caring mum to me.

It sounds extreme for Aspergers, ( please correct me if I am wrong as I know this may have changed, but I thought Aspergers was a very mild form of autism, and this sounds closer to a friends child who has an autism diagnosis rather than Aspergers).
I agree that assisted living might be the best way forward, as this sounds totally unsustainable to deal with at home. How can you keep her safe all the time ? Is she ever at home alone ? Very difficult for you as a family to cope for decades with no sleep , aside from everything else.

they criticise me a lot saying that she hasn’t been parented well.

How awful! :-O

@CharlesChickens no my nephew is asperges and it sounds so similar to him. In his assisted living they had ability to have a kettle in their rooms to have hot drinks, but his had to be removed.

@dishingoutdone thank you for your replies! She was statemented at school but her only support when leaving school was with finding a job. I contacted social services last year (because at the time she was attempting to learn to drive which was the most dangerous thing I’ve ever seen and I wanted to know if they could revoke her provisional licence as DVLA had deemed her fit to drive!) and they said she isn’t actually recognised as a vulnerable adult and I did ask about her statement from school and they said that this had lapsed after she turned 19! This shocked me hugely!

Hi OP, I'm afraid nothing will happen unless you completely refuse to support your DD any more (I have been through this with a member of my family where all services would have been perfectly willing to see me grind myself into the ground in impossible circumstances).

Start by going to the doctors with a diary of her behaviour and say that you absolutely cannot cope any more and she must have an urgent assessment with a view to going into assisted living. Ask him to organise an assessment by adult social services asap and also ring them yourself.

Stress to the doctor and ASS that you can no longer cope, and explain that you are entirely alone as your DH and other DD's deal with the issues by absenting themselves and that they are not available as alternate carers. It goes against the grain I know, but really emphasise that this is not a sustainable position and that you are on the verge of breakdown. If you can bring yourself to, say that you will be putting your DD out on the street at the end of the week. Only in a crisis will you receive the help you and she need. Shitty but so true.

Once they crank into gear, ASS will find her assisted living and support and probably quite swiftly. They will never do it if they believe there is any chance they can continue to get you to do it for them. Do not weaken!

You deserve to have a life and your DD needs more support than you can give.

OP one fact that jumps out is that your DD is holding down a part time job. How is she managing to do that?

Isn't there something Social Services or Social Care do called a Needs Assessment for adults?

www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/getting-a-needs-assessment/

@clairemcnam her job is the most important thing in the world to her! She loves it and it gives her so much confidence! She has good interpersonal skills (which in the past has made me question her aspergers diagnosis) and is great at dealing with customers! She has very regular breaks at work and it’s a family business that she works for so I think they are a lot more understanding than a lot of employers would be. They think she is a very sweet girl that is just very young for her age! Also it never gets that busy so she doesn’t become overwhelmed with it! She previously worked full time at a bigger company when she left school and only lasted a few weeks! She spent all day talking there and played with a puppy for an afternoon instead of doing work!

You need to call social services and beg for help, I know it’s hard but unless you lay it on thick they won’t help you (I’m in the process of doing the same with my dd), also speak to the mental health team and tell them you are not coping, if they can’t put her in supported living then there is the option of her living in her own house/flat and having carers come in to help her, I’m currently working as a support worker for someone in this situation as supported living was not suitable for him.

I really feel for you as I know I will be in your position when my dd’s leave full time education

You can ask social services for an assessment under the care act 2014 s9, 1 and 2. If you do not think the assessment has been properly carried out have a look at the Care Act 2014. You could post this on legal where some of us hang out, it's not my area of expertise. Look at s12 as well, as it is very clear as to what should be done. Your daughter has to agree to an assessment. Is she in receipt of dla or pip, and if so what rate? That can evidence high care needs.

@jon65 thank you for this information! She gets DLA. I think she gets the highest rate for both care and mobility

You have every reason to ask for help - from social services and the support groups mentioned. If your GP isnt helpful try another. Also, if you can face it visit your MP - just be very clear about what you are saying (and perhaps write it down). If you can persuade your MP to get involved they could move things forward much more quickly. Your descriptions of your situation on this thread are very clear (and worrying) so be confident that you can express yourself well.

@charleschickens she can be left at home for short periods (about an hour at a time). She is obsessed with Britney Spears so if I leave her with her earphones on and music playing she will just sit and flap her hands to that and she will not get up to trouble for an hour or so if I need to go out! I don’t think she is a typical case of aspergers and at times I have wondered if she actually has adhd rather than Aspergers

Supported living is the way forward, it will give her independence within a safe environment. It will give you and your family your freedom back and you can build a new relationship with her over time. People have made some excellent suggestions in this thread. I used to work with young adults with differing intellectual needs, and you need so much more support than you're getting.

Could she do an Independent Living Skills course at college?

Full time courses inFE are free to anyone so even if she is 20’s she can go and do as many courses as she wants, just not repeat the same one. They will have different levels and different types of courses such as basic animal care, computers or just Independent living skills such as cooking , cleaning, jobs.

I’ve suggested assisted living but they tell me that she wouldn’t get a place

Standard reply, I'm afraid; no matter what you suggest it'll be refused while they think you'll do it instead

I've been through this, and if your DD's capable of working I'd be very surprised if she wasn't suitable for assisted living. Therefore I'll bring in the "bus analogy", as in what would happen if, heaven forbid, you fell under one?

Answer that one to yourself and you'll probably find your way forward becomes a lot clearer - including, probably, the need to be a lot firmer with support agencies

@thatssomebadhatHarry she has done a few life skills courses over the years. She is quite helpful at home and does help with cleaning (I do have to nag her to stay on task) and she is a good baker and makes herself pain au chocolat for breakfast some days. I think these courses do help her and I will encourage her to do some more!

As I've seen mentioned assisted living can be amazing in these circumstances. I hope you get some help.

I just wanted to say a huge thank you to everyone for all your replies! I’m going to speak to our GP tomorrow and ask if she can be assessed again. I think I will also contact our mp tomorrow as I’m having no success with the mental health team and explain the situation and hopefully they can speed things up for us. It’s really difficult for me to accept but I think that we may be at the point where assisted living may be suitable for her as I don’t think I can continue to meet her needs at home. I will ask our GP the best way to go about this! Once again thank you all so much for your replies! I definitely feel more confident about moving forward!

Hi love. I have a relative (on the autistic spectrum) in assisted living and he actually seems happier there than living with family- more company, lots of staff to chat to, very structured. It was a very tough decision to come to terms with at the start though.

I would definitely push for a place if I were you. PS. you sound super dedicated and like a very loving parent. Take comfort from the fact that you're doing your best.

It’s a very differed scenario, but when I was was at the end of my tether with DM wandering in the street in her nightie and handing out money - which her GP didn’t think was a problem - I rang the Alzheimer’s society.

AS advised me to keep saying safeguarding to all professionals to get them to take me seriously. They were right. I’d spent months trying to get DMs Professionals to listen to me without success, and finally, by making them responsible I got some action.

Sadly, the NHS and Social Care are so underresourced that they are fire-fighting. Whilst family-member carers are coping - at least to external appearances - they won’t be a priority.

Good luck OP

@mumto3xxx

As I read your posts, I too thought ADHD, but alongside the ASD rather than instead of. Hand flapping is common in those with ASD as it's a stim and the impulsively and lack of focus can be signs of ADHD or ADD. I think seeing the GP for reassessment is a good step in the right direction. If the GP is dismissive, try a different one at your practice that has experience in ASD and ADHD (ask at reception). Try contacting National Autistic Society for advice on what support is available locally. There may be a local support group, for example. There is also Young Minds youngminds.org.uk/getting-help-with-autism/

See www.autism.org.uk/about/what-is/related-conditions/adhd.aspx

I would also keep a log of behaviours and what caused it, so if anyone suggests it's a parenting issue, to ask them what they would advise. You can then show them the log and what happened, to show that it isn't your parenting or that they can suggest a strategy you don't already do which they think may help. Just saying it's your parenting isn't good enough OP as it's not helpful, they need to be specific so you can say "well yes, I do that", or "OK I can try that".

Mental Health Services may start to back off, because ASD and ADHD aren't really their remit, unless it's causing mental health issues like anxiety and depression that needs intervention in some way.

@shawshanksredemption all our family think she has ADHD, she does tick a lot of the boxes so I will definitely ask the doctor about it tomorrow. Unfortunately we are regulars at our gp’s as she seems to always feel ill (she has had so many investigations but nothing is ever found). Our gp is very supportive of her, he says that she is a ‘lovely, very special girl’- of course he only ever sees her for 15 mins at a time and she’s never thrown a tantrum at the dr’s! I hope that he will refer her urgently for assessment!

You could ask for her to be assessed for an EHC plan, as a PP has said; but social care is a parallel system. As PP have said, if I were you, I'd ask for an assessment of need for social care and support for DD from the social services disability team - they may be called the Transition Team (16 - 25) or the 0 - 25 service where you are? Social services have different criteria to the mental health team. I am not a professional, but I find it difficult to believe that if your DD is entitled to DLA care and mobility at the highest rate, she won't meet the criteria for social care and support?

The assessment of her should be carer blind - ie they should assume that nobody is going to do anything for her by way of care, so how would she meet the outcomes?

"The desired goals and outcomes may include being able to:

eat properly
look after your personal hygiene
go to the toilet
dress yourself
be safe at home
keep your home clean and safe
see family and friends
go to work, volunteering, education or training
use services in your area"

If she could not meet two of the outcomes (and I would question be safe at home, if she burns herself regularly for a start), then she would meet the criteria for social care. They should also consult with you, as her carer and you can do it, not in her presence. Insist that you do not want to do any of her care (and in law, you are under no obligation to care for an adult) - you want to work, pursue education, health appointments, leisure activities, etc. Tell them, you want her to go into supported living (because what will happen to her in the event of you being in hospital for some time, or after your death) and its better to choose somewhere nice for her now, than leave it to the LA, on the day of your death - when they will choose the cheapest or what has a vacancy? Or at the very least, insist on respite - its assessed as being for her benefit, although the respite is for you!

They can send carer(s) into your house to do her cooking, laundry, washing up, etc - they won't do yours, because its in respect of her! They can also take her out to leisure activities like the cinema or shopping, whatever a "normal" adult might do in their spare time - which would also give you respite.

Tell them exactly how it is! If you give any indication, you will care for her, they will leave you to it, because it saves them money.

Finally, at the same time, ask for a carer's assessment in respect of yourself. You could ask for a cleaner for instance, to give you time to spend with DD; or a carer while you attend health appointments, etc, or respite.