I can't prop my daughter up forever, feel like I'm going to lose her

[PointlessPoster]

This might be long, am thankful in advance to anyone who reads it!

My DD is 21. Problems forever, diagnosed as autistic when she was 16. Struggles emotionally, been on anti depressants for years, she also smokes weed, takes recreational drugs and drinks (I have NO control over this,she knows what I think about it). She split with her partner a few weeks ago, took an overdose and was taken to A&E by the police once we'd tracked her down, referred to community MH team after being seen, lady she saw said it sounds like Emotionally unstable personality disorder which, reading about, I agree. This is the latest in a long, long line of similar incidents and my coping mechanisms are shot. Constantly feel like I'm waiting for a knock on the door from a couple of policemen.

I feel like I'm on constant suicide watch. Yesterday she didn't get out of bed or open the curtains, then last night she said she felt like she wasn't destined to live a long life, then she was going out to meet a "friend". I've been awake half the night worrying. She is OK and on her way home but I know she was out getting wasted. She is basically either saying she wants to die, or going and getting drunk/stoned. Says she has no friends but is so all over the place that I'm not surprised.

I feel like I spend my time telling her things she could be doing to improve her life, services etc but she doesn't listen and won't really engage in anything. She does have a job but only manages to work about 20 hours a week. She did a couple of months in a young person's rehab/training place last winter which did help until she met new partner and moved straight in with them. Her sleep is all over the place. It's really impacting on the rest of the family, we have a younger DD in the house. It's like walking on eggshells. I don't know what to do. Help, feel like I'm drowning........

She needs autism specific support.

How knowledgeable are you about her autism?

She needs a very regimented routine and absolute control over sensory stimulation.

The drink/ drugs sound like she's sensory seeking. So she needs new, healthier sensory stimulation.

How much control does she have over her environment at home? Eg meal times, food?

She is probably best living independently. My ASD DC functions much better having their own space. Does she get PIP? Work is maybe too much for her? What about an online course an/ or some volunteering?

Does she have friends?

Does she get any ASD specific support?

(Maybe repost this in the neurodiverse mumsnetters board)

I don't think she has a mental health disorder, I have autism and it's very common they try to diagnose us with mental health conditions on top when in reality we just aren't getting the right support for our autism. Specifically if she was diagnosed late. I was the exact same, I went into drugs very hard and now I've been clean for the past 5 years off them. It was down to lack of support, not knowing where my life was going.
My partner and my mum fought for me to get support and with that I got clean. I got my life together.

Fight for the correct support.

Also...

Sleep try melatonin. Job - sounds like she could do with less hours if she's not coping well enough.

Pip and universal credit LWRCA is what you need to go for. I'd also see if there's anyway of her meeting new friends who aren't in that "crowd" of drugs and booze because that's always a massive influence and what keeps the circle going.

I work with young people who sound like your daughter OP and all of the above is sound advice.

Daisy grey with all due respect that post is mostly questions!

so if you work in this area what is you advice regarding specific interventions

I am autistic, late diagnosed in my 30s and agree with @caroleanboneparte . She sounds like she is completely and utterly burnt out and definitely not coping with life as it is at the moment. There are lots of support networks online for autistic adults, reddit has a few helpful subreddits for example like r/aspergirls, r/autism and others , there are also autism specific forums but I can't remember their names right now. They can be a really good peer support network.

Where would I even go to get help for her? We have had nothing since she was diagnosed, nothing at all, nada.

To answer some questions, she would definitely prefer to be living independently, she hates living at home (which I get). Not sure how that would look or what there is available for that. We haven't got a lot of money, definitely couldn't fund a flat or anything for her.

She doesn't get PIP or any benefits, she likes her job but struggles to speak to people there. She wants to work, she wants to be like other people but just can't cope with normal life.

She hasn't got many friends, heavily dependent on other family members. I genuinely think people must find her really hard work.

I will ask the doctor about melatonin for her.

She will not engage with any online support stuff, I have tried this before and she won't do it 😭 it's hard to get her to engage with any human unless she actually likes them which is rare!

It is great to hear you turned it around @IntrovertedPenguin and I think your insights are very valuable on this thread. OP I just wanted to pass on my sympathies for what must be such a difficult time. I'm sorry you're growing through this!

She hasn't been coping with life since she was about 12. Constant CAMHS and hospital admissions. She was probably admitted to go once a month during her teen years. Things have improved a bit on that front but she is still struggling and it's a different ballpark now she is an adult

My suggestions would be:

Don't "tell" her things, suggest in conversation things you have discovered, eg "Oh I found this great thread on reddit, it's about sensory input. Did you know some autistic people find that weighted blankets help them sleep? I found that interesting"

Accept that her sleep is wonky. Sleep has always been an issue for me, there's not always a fix for it. Being overstimulated or burnt out means I find sleep harder.

If she is living with you, help her make her room and maybe one other space in the house a sensory friendly place- does she seek or reject sensory input? She may like soft furry cushions, squishmallows to hold, a dimmer switch so she can alter the light to what she needs, varying blanket weights for her bed, basically make her room a sanctuary for her. If that means she never wants to leave it- fine. She may need to switch off and decompress alone for a lot longer than a neurotypical person does. The sibreddits I mentioned before have lots of suggestions for making cosy sensory-friendly spaces

When she is melting down, or in crisis- don't try to fix things. Listen to her, offer her a cup of tea and company, ask her if she would like you with her or if she needs her space. Fixing things is only really possible when your brain is not in immediate meltdown.

Find accomodations for her- does she need noise cancelling headphones when she goes out to shops etc? Sony mx-4s are brilliant for this, esp as they are normal headphones so don't look like a disability aid. Is the sun too bright? Lights in her workplace? Etc.

Talk to her, and ask questions in a gentle way, to help her work out what she needs, but Also, bear in mind that for autistic people, if we are in crisis we don't always recognise what we are feeling, equally being told what we are feeling can make that worse! She may need to learn to listen to her body, and that can take time.

Also, clothing- does she know it's ok and a good thing to choose your clothing based on how it feels? And that clothes and shoes and so on shouldn't hurt or feel uncomfortable, and if they do she can choose not to wear eg an underwired bra, or heels, or skinny jeans, or whatever it is, even for work.

I also work in this area and agree autism is enough to explain her current distress. It doesn't sound like you need to seek an EUPD diagnosis too or that would help explain much. It's very common for autistic young people to experience acute mental distress as they transition to adulthood - a lot of structures and routines which may have helped them cope (even if they were unhappy at school) are removed, it can be hard for them to positively identify the new structures and routines they need in place and NT people around them don't have the same needs so cannot see what is missing. I don't want to give specific advice but agree trying to identify autism specific services or at least MH services which know about autism may help. As will helping your DD find community with other autistic women who can relate to her experience and help her build a positive self image as an autistic person, not a failing NT person. It's also likely the drinking and drugs are coping mechanisms, typical in all young people experiencing mental distress. Ideally she would stop them but she needs other support in place to do that - just challenging her to stop is unlikely to work or will result in switching to other self destructive behaviour. BUT with support and a stronger sense of herself as able to cope with the uncertainty of adulthood most autistic people do survive abd thrive and we probably live in a more accepting world than we did. It's important to understand the environment is exceptionally hard, she's not getting life wrong

Also, as an extra thought based on your updates- she may have internalised ableism, that being autistic is a Bad Thing and Something To Hide. There are plenty of ways to meet sensory needs etc and also fly under the radar at work for eg.

caroleanboneparte I agree with lots of your post but not all people with ASD respond to very rigid routines. I have one child with ASD with a PDA presentation and they need a great deal of flexibility and will kick against any rigidity.

OP her needs are definitely not being met and some exploration of her presentation and how to meet those needs is definitely hugely important. Have a look at the PDA society as there is some good advice there in case that presentation sounds similar.

It also definitely sounds like there is sensory seeking behaviour going on too, and whether this is due to the ASD or not it is difficult to know.

However, it is incredibly hard to help if your DD won't engage. How did there/do they feel about their diagnosis? They may still be processing it which could be causing some of the problems.

Good point 😂 I was multitasking and advice was the wrong word. They were good starting points.

Autism specific support is the best direction as support tailored to neurotypical people who take drugs etc is different. As someone pointed out a lot of the time it's dopamine/sensory feedback they're seeking and it needs to be shifted onto something positive.

Apply for UC and get a PIP assessment as a starter for ten. Then try and engage with the CMHT and adult social care. You need help, you can ask for it.

I'm sorry OP. This is such an exhausting position to be in. Been there so close to your own journey. No advice, just solidarity.

It's fairly common for autistic women to be misdiagnosed with personality disorders so I'd be dubious of that. Many healthcare and mental health professionals are not very informed about how autism presents differently in women.

To say she doesn't have any friends and you are not surprised... autistic women often struggle with friendships and feel very distressed by this.

If you have reached a place in your relationship where you resent your daughter so much, I think she might be better off living elsewhere.

I agree with @daisyjgrey the only problem being that there is bugger all autism specific support out there. Some generic services are very good, some are terrible. Hard to know in advancee. If there's a local autism charity where you are I would reach out to them for advice as there will be other parents who have been in the same boat. Part of my job involves training people in community MH services re autism but they work with people with a huge range of needs, where things are good they can be very good. But it varies. Agree with the point re internalized ableism or something similar. Autistic young adults in my experience often have terrible self esteem, we live in a world which treats being very outgoing, extrovert, open to new experiences and flexible as normative for young adults (look at popular TV shows like Love Island). Of course only a tiny proportion of NT people are like this and hardly any autistic people are. But they can get a relentless message that unless they take constant exhausting risks in their work and personal lives they are failing. A lot of what we do is help people build a positive self identity which incorporates their neurodiversity.

Gruffling, if I resented her that much I wouldn't be posting would I? I am just at a complete loss as to how best to help her, and quite frankly I'm starting to make myself ill with worry about it. This has been going on for nearly 10 years.

OllytheCollie, thank you for that. Yes her self esteem is through the floor. I have tried to investigate what services are available but they are either non existent or really difficult to access. She knows she needs help. She has got so many things that she is incredibly good at, and so many good qualities beneath all this angst. My heart bleeds for her.

She doesn't like to tell people about her diagnosis, when pushed she describes herself as a "piece of shit" or whatever. She really isn't, she has been let down in so many ways by society and I fear that includes by me too.

Sorry I'm having a good old cry as I write this ☹️

There are SEN specialists that focus on adults. Usually part of private GP practices. try searching for private autism / asd diagnosis locally & if you see one in a GP or psychiatrist practice they will probably have contacts. Isn’t cheap though but well worth it.

Bless you. I understand where you are coming from. My DD is younger but I worry about this in the future. She needs a constant "regime" too. School holidays and flexibility cause chaos.

Has she been assessed for adhd too? Low self esteem, high anxiety, a brain that just will not shut up, seeking dopamine highs, poor sleep. Often co morbid with asd. Drug and alcohol abuse is really common in undiagnosed and unmedicated people.

If she won’t access online support are there any actual support meetings for people with an asd diagnosis ? Where she can just interact with similar people?