Can anyone help with advice?

Betina said:

I do talk with my friends but they have no understanding. Just tell her to tidy, they say. If it were that easy.

Hahaha.  I have another child who is my truly wild-child.  20 years ago when she was a teenager it was the conversation with others in a similar situation who were helpful.  Everyone else would just tell me to get her in line.  But others facing the same issues could understand that she was upset, depressed and not coping, and getting in line was not an option.  In the end I took her out of school and home educated which was a life saver  It took her another 10 years to come to terms with her neurology, not autistic, more mood dysregulation, and to learn to manage it enough to be able to function and get herself an education, now doing a PhD so she has mastered the academic life at least, though just as Losan says, she is never going to be neurotypical for moods.

I'm so glad that you have started to find some support.  The GP will put you in touch with useful groups, especially carers support groups where you can contact other local people who understand what the demands feel like and how hard it is to manage the relentless need.  I hope that now you have started reaching out you will find the support that makes possible continuing the support that you are clearly very committed to.

Feel free to PM anytime if you like.

I am new to looking into local authority provision for autism, but my first reaction to this is really?  In general if the local authorities recognise a need they have a legal obligation to make some provision.  Often they need a push.  I spent many years as a home education advocate correcting the education authorities misunderstandings about home education and/or their failure to provide an education suitable to a particular child.  Most of the time they got away with it just because most people didnt know to challenge them.  I presume someone on here can give advice on this point or direct you to someone who can.  Local community lawyers are also often excellent on this sort of thing and very happy to point you in the right direction about what services should be provided.

Lets face it if you werent there she would HAVE to be provided assisted living.  The fact that you are coping now is no reason not to provide her/you some support.

https://www.autism.org.uk/advice-and-guidance/topics/social-care/social-care-england-carers/carers-assessments 

The Autism Act 2009 clearly requires the local authority to assess and make provision for needs relating to autism diagnosis.  It looks to me like that hasnt happened.

https://www.autism.org.uk/directory/search-results?searchTerm=legal&postalcode=&radius=0  

Thats really great.  When you are very low it takes a long time to come to terms with how low things are for you and to begin to take steps to improve things.

Yes it is.  Its a term used by locals for Bristol

You could buy paper plates? :)

And yes, she sounds exhausted and will need to support to find the best way out. But to be clear, the way out won't be to become neurotypical - challenges will always be present. 

I'm not brilliant at self-care all the time; but have held a steady, high-paying job for twenty years (occasionally at some cost); my family do have to chase me for plates out of my room...and I am self-aware enough to confess it is cluttered. The slight distinction is I've never fallen into long term depression...and, well, I own the house.

It genuinely doesn't come from a place for laziness. Sometimes overwhelmed, sometimes just don't view as a priority, sometimes just don't 'see' what others would consider as mess. For me, I tend to need stuff to stay where I left it last - otherwise I forget it exists, can't find etc.

I'm happy to exchange private messages if helpful - I can try to share a bit of a first hand view that your daughter may not be able to.

Thank you so much for your reply, I really appreciate it. You are the first person in a similar situation to me, that I have had contact with. Situations are easier to handle when you realise it's not only you.

So much of what you have shared, I understand.

I do talk with my friends but they have no understanding. Just tell her to tidy, they say. If it were that easy. However, I took advice given here and spoke to a friend. Told her everything we are going through and to my relief she listened. Most importantly she listened without judgement.

I now need to talk with our GP and see what support/help is out there. 

Once again thank you for listening.

Thank you. I think her bedroom is her safe space. She is very, very depressed. We do eat together but she makes snacks/drinks and takes them to her room. I hesitate to put rules in place about this, could make her feel worse? I wonder if she is exhausted with life and neither she nor I know how the best way out of this. 

"Bizzle" thats kinda funny 

Thank you for taking the time to read my post and for your reply. 

My daughter is talking with a therapist,  qualified in autism. I am a counsellor but have no expertise in counselling an autistic client. However I do know that you have to be able to be very honest about yourself to get the best out of any session. I don't think she has the energy currently to do this. Hopefully I am wrong 

My grand daughter is a very sweet, kind and loving little girl. She loves her mother deeply. She is a child who has a very complicated personal (not withstanding her mother's difficulties). I work with her and so far she is a very well adjusted child. She is showing great resilience. 

She came into the world years before her mother's diagnosis. A time when my daughter had spent over 25years trying very hard to be neurotypical. Even when she got her diagnosis, when she asked for help/support in bringing up her child, she was told there wasn't any! Her psychiatrist had a conversation with me, telling me how lucky she was to have my support! 

Sadly there are no assisted living places where we live. I've had discussions with her sisters and we feel that some kind of life coach would be beneficial. If there was such a thing. Someone who could pop in from time to time, chat, keep watch over things. Someone other than me, maybe she would find it easier to listen. 

She joined a group for adults with a late diagnosis, so she does talk with a peer group. But I wonder if she is honest with them about her self care difficulties. Shame is a horrible emotion to have to carry around and I believe she feels deep shame. Thank you for your suggestion.

Thank you for your reply. Yes, I've tried this so many times, so many different approaches. It only leaves her feeling worse about herself.

Hi Betina,

I am father of an adult autist in late twenties with the same self care issues, despite a great deal of intelligence and capability.  Fortunately we are able to talk easily now after many years building trust.   But the same things apply they need their space to be private but dont take care of it, or keep clean.  Washing up is a Big Deal, and I dont mean that as criticism I mean I understand it is an enormous effort for them.  So I totally identify with what you are saying.

I have often debated with myself are they being lazy, should I be being more directive. But I always come down on the side of supporting and trusting that they are managing their time and energy as best they can, but are overloaded enough that they cannot do tasks that they know matter.  But in my case if I do decide not to fix stuff and let them experience the consequences of their own decisions, then it doesnt really affect anyone else.  That is what is different in your situation and reason that the comments of others to get help with this are so appropriate.

Others have made some great suggestions.  Talk to other people, get some support, dont let yourself be overloaded.  I can see you know you need to take care of yourself as well, dont feel you have to solve everything.

On motivation that is such a key question.  In my case they say that they dont have any, basically about anything.  Certainly they have desires to be creative, to do things that others recognise as worthwhile, to achieve something to be proud in, to not be disruptive for others around them.  But they say this doesnt connect up well with the actions that would be needed to reach those goals.  I think recognition, pride, not being disruptive are very complex concepts to them, so they dont feel any confidence that they can choose the correct action to achieve them.

We have the most success with simple direct specific requests which have advance warning wherever possible.  Your sisters are coming to stay could you clean your bathroom before they come at the weekend is much more likely to managed than please keep you bathroom clean for guests at all times.  Of course sisters are a great help, they give direct feedback anyway!

Is it unusual behaviour, I doubt it.  My sister may be an undiagnosed autist.  Once she left home she had intermittent trouble keeping her flat and self clean, which cycled with her depression.  But she never had children.

I think you are an absolute hero taking care of them both and wish you every success with finding help.  Make sure you look after yourself.  Get help if you need it.

You may like to contact our Autism Helpline team who can provide you with information and advice.

https://www.autism.org.uk/what-we-do/help-and-support/helpline

You can call them on 0808 800 4104 (Monday to Friday 10am to 3pm.Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an adviser.

All the best,

You could consider reframing what you consider as 'normal' and try to consider creative solutions It's difficult to be motivated to do things that could/will cause stress and anxiety.

For example, what can be done to make it easier for her to spend time outside her bedroom (including mealtimes so plates don't go in there in the first place). But bearing in mind she will probably still need alone time / recovery time.

In particular, are there sounds, noises, etc. that might be stresses? Does she cope better 1:1 than in a group of 3 etc?

(What you've not said is how stressed/anxious/depressed she might be - some of that can be a rational response to social/sensory difficulties)

I don’t  think there is advise random outsiders online can give to this kind of thing, i will try to branhc out on some things for you to think about but only you reallky get your situation so  i mean....

do you and ur daughter do therapy regularly or  get any kind of professional aid that can help your daughter develop some of these hygiene skills or find other ways she can help so your burden is lightened? I have some bad habits and issues and i do feel bad when they impact other people but i also am open to hearing other people express their discomfort and try to work on it because i know how i would feel if i was in their shoes.....so i work with them to figure out a compromise for everyone to be more comfortable. im not sure if this is something you can really teach now to a 34 year old. Not that 34 year olds can’t learn of course...but not if they dont want to.

also maybe your daughter and granddaughter want to start going to therapy together if you can afford it or at least scheduling 1 on 1 time to stay connected and considerate of each other. I may be speaking out of line but since your the one posing the question And i think it important to really address the gravity of this situation i will say i find it alarming that your daughter had a kid before developing the emotional maturity to be upfront about her diagnosis with her own kid. i mean everyone deserves to have a kid if they can handle it, but your daughter, for all the love she has, is not able to take care of herself or the kid, and is being entirely neglectful, based on what you’ve stated. Neglect can really mess up a developing child, which is why im being so harsh. If your daughter was just struggling and not confusing your daughter or potentially hurting her in the process thta would totally be one thing but once you get a kid involved, you cant be as leisurely about self improvement because your own flaws dont just affect you anymore.

I’m sure none of this is easy to be in that age range of a grandparent having to take care of a child again. It will be draining and odd for both you and your granddaughter but it sort of seems to late for change.

one last thing, This may seem dark but what does your daughter plan on doing when you can no longer take care of her? Will she need to go into an assisted living facility because she is not capable of caring for herself? or is she capable enough that she will start taking care of herself because she has to? If she can manage it but doesnt i suggest you start pulling the breaks now, applying those pressures while your still capaable of helping her grow, and start making your daughter well aware that if she wants to keep living under your roof and living with her daughter, she has to step up and atleast clean up her own space. If she is not capable and may actually benefit from assisted living...I’d start looking into it, assisted living is always a touchy subject no matter what demographic it involves, but in some cases it is whats best for all parties. If your daughter is genuinely unable to support herself, Based on your current situation, it sounds like it might be a benefit to consider it

ask her to come on here !

me about 3 years     it all started with a Californian book called "Zen without Zen Masters" which is linked to the "Discordian" group in USA . I wasn't sure if the book was taking the piss/satirical. Great book. 

keep at it ----I found it very healing/useful in that my anxiety has been pushed away and It is helping me to change how I think about everything.

i guess so I've been studying it a few years

welcome Zen48

I believe you are new 

Are you anything to do with Zen ?

I don't like to give advice, so I won't. Have you tried talking to her and gently explaining how you are feeling??