Autistic teenager multiple suicide attempts, what to do

[RyanLondon]

Hi, I am a father of a 16-year-old teenage daughter. She is officially supposed to be in year 11, but she has barely been attending school for the last 3 years. She is an only child, and she has had, in relative terms, a fairly comfortable life. Before the age of 12/13, she did not show any autistic symptoms that we, as parents, teachers, her cousins or anyone else, noticed. She always struggled with friends.

She is the quiet type of autistic child, but at home, she is not quiet. She is not violent, and she does not swear, so most adults, and even professionals, struggle to pinpoint her issues as he comes across as a very polite, well-mannered teenager. And this is part of the problem; her issues are very deceptive, and as she wants people to like her, she presents as someone very together.

During the lockdown time, she started having issues concentrating. From there on, it has been a 0 to 100mph in less than 3 years. She has been in hospital at least 5 times, on two occasions for 2 weeks at a time. She was officially diagnosed as autistic about 6 months ago - so very late, which I believe is more common with girls. However, they suspected she was autistic for at least 1-2 years now. She has been seeing CAMHS on an almost weekly basis for about a year or more. She has been in a mental health facility, initially as a day patient, since October 2023. For the last 2-weeks, she has been a residential patient there because she cut her wrist, and she is adamant about ending her life. In short, since engaging with mental health services, her issues have been escalating.

She is our only child. She was at the top of her class, very academic and had high ambitions - which was all her, not us. She has now completely given up on life. Before you ask, no major trauma has happened in our family or her life that we can think of. We have thought of every possibility, from boys to sexual abuse and anything in between. Unless she tells us something or we see some evidence of something, we are lost. I have installed cameras inside my home in the communal areas for safety reasons. It is just the 3 of us at home, mum, daughter and me.

We live in London, and we are considering moving somewhere rural - for her as she likes the countryside. We have even considered moving abroad, somewhere like Portugal. However, we know that living with her is draining. Plus, there are limited mental health facilities in rural areas. You have to consider everything in situations like this. We also have to hide everything when she is home, from handwashing liquid to floss, because she can use almost anything to do self-harm. For me, the mental health services have been shockingly bad. At the same time, I accept that it's not easy to solve these things.

However, I will have a decision to make in the next 6-12 months, which makes me feel like a terrible parent. If she is not stable enough and her attempts don't stop, it will drain me and my wife - further. If we are not well and stable, then we cannot be there for her. We are already severely depressed. It is highly unlikely the NHS will consider a residential home for her - that is the feeling I get because she has supportive parents. So, what are we to do next? Because she is being released home next week. We took her out to a restaurant last night, and she made it fairly clear that she wants to end her life whenever she gets an opportunity. I am going to relay this message, but I am sure it won't change the plans set by the mental health team.

I would welcome any advice from parents with any knowledge or experience with mental health issues. Thank you.

@DodgeDoggie I am flexible. But I am considering Wales. I have lived in Devon for about 8 or so years, so would consider that. Cornwall seems too expensive. Wales because it has more rural options, and seems relatively more affordable. The worst thing about our situation is that we cannot plan anything at all now.

I am finding it difficult to get a place that will allow cats and dogs. I don't want to buy it until I know it is helping, even a little. So, I would like to rent for 6 months to a year before I consider buying because I would have to sell in London to buy outside, which in itself is a long and stressful process. My daughter's situation has also meant I haven't been able to work properly for a few years now. Nevertheless, I am fortunate to have other ways of managing.

The only positive thing, if you can call it that is that I almost separated/divorced before all of this happened. But now we are getting along with next to minimal issues. I suppose we have had to come together for the greater good.

@ArseInTheCoOpWindow I removed education as an issue some years ago. Although we both went to uni etc, it was never us. All the pressure was her doing it to herself - not exaggerating. Even the counselors could see this.

This is going to make me sound old or out of touch. I see a lot of people using abbreviations like DD - I assume that means daughter, right? And D is that son? Please educate me a little. I don't use social media in the "normal way" so I am not up to date on a lot of terms. Thank you.

What is she doing with her time? It sounds like she needs a massive retreat from the world until she’s better.

l have so much sympathy for you.

Does she have Pip? That would help you financially.

@ArseInTheCoOpWindow We don't get anything. I haven't had time to apply for anything. What is Pip?

Pip is personal independence payment, which your daughter really should be entitled to, it's about £400pm, i can't remember about 16 year olds and uc (universal credit) but if they're in the limited capacity for work and work related activity group it's about £600pm and carer's allowance for you or your wife is about £60pw. I don't know if you'll get carer's though, i can't remember if it's means tested. However your daughter should certainly get pip. Look for a local disability charity in your borough who can tell you all about benefits. Your daughter, at least currently, is disabled / ill and it creates a massive financial hit. It's very very hard to work when your child is in crisis.

When my son was super ill we just did projects around the house together. We sorted, rationalised and chucked throughout the house, decorated, hung pictures. If i knew it, i taught him, if i didn't we learned a skill online and did it together.

As he got better we dug a vegetable patch together and sorted the shed. It gave him a lot of confidence that if he ever needed to hang a picture, unblock a sink then he knew the way forward. Also it suited him to organise the house 😂

Eventually he was able to walk the dog with me and now he can walk it alone, he has a friend and he can go to a shop. He can order online and interact with the delivery person and he can take a taxi alone.

If you apply for pip uc etc insist on a home visit and say your daughter is just far too ill to attend their offices. My son certainly was too ill and he was unable to communicate with them at all.

@Neveralonewithaclone.
When my son was super ill we just did projects around the house together. We sorted, rationalised and chucked throughout the house, decorated, hung pictures. If i knew it, i taught him, if i didn't we learned a skill online and did it together.

This has made me a bit tearful. What an amazing parent you are. ❤️

OP whenever I read these MH threads I always consider PMDD, which I know has already been mentioned. Now mid 50’s, I suffered with PMDD from my first period to my last; a slave to my hormones my whole life. Please so consider it once you are through this awful period in your lives. I had some very dark, angry and confused days every month after ovulation.

My best friend’s DD has struggled with MH since the first lockdown; self harm, anorexia, suicide attempts and an ASD diagnosis at 15. Things for them are beginning to look better, I hope they do for you all too, very soon.

Crikey thanks, that's very kind of you to say.

I do think asd teenagers really really struggle with anxiety. It's hard enough for nt teenagers to understand 'the world' and their place in it and sexual identity ideas are just so much more difficult to decode. It's no wonder they have breakdowns really.

You have to make time for this.

It’s a disability payment from the government. Mine gets full pip It’s nearly 700 quid a month. We didn’t have time to breathe, but we made time. You could also claim carers allowance.

You can claim on behalf of your daughter which will add to the case. It’s hard to get, but we got it first time. I don’t see how they can turn you down tbh. Start collecting evidence. Doctors letters etc.

My Dd couldn’t manage medications. We had to give them to her. Wouldn’t go on a bus alone or talk to professionals. We claimed it inthe middle of burnout. She was granted it for 6 years. Getting a little car
pn the motobolity scheme cheered her up no end.

You should also claim UC if she’s not in school. I know exactly how to write and answer stuff so those bastards at the DWP don’t wriggle out of paying.

Iy takes headspace. But it’s worth it if you can. I’d be happy to help you if you need it. Please pm me. Believe me, Dh and l could get those grinches to pay out for anything.You also need an EHCP, again hard to get but worth the battle.

We’ve had similar struggles. Awful time. She’s 17, and coming out of it a bit now. She’s just been diagnosed ADHD as well. She’s just started medication for it. She says it suppresses her sadness in a way fluoxetine didn’t. Which made no difference. If you had all the benefits you’re entitled to it would help you afford these things privately as we all know the state the nhs is in.Bit as your daughter is so unwell, they may do an adhd assessment rapidly.

Good luck

I agree, this is the time your family really needs a government income. One of you MAY be able to work but the mh crisis just blows your own mind and money is a headache you can do without atm. We were able to manage financially with the disability benefits so that i could concentrate on my son being my focus.

And you need a social worker. Not about keeping her safe, but to help you apply for these things and to support your family.. You will have to fight for them and persist. Dont let them push you away.

They’re are also charities who will help you with the claim. I’m not sure of the names but someone will know and post I’m sure.

Someone somewhere should have told you all this. I’m sadly unsurprised no one did. Again l had to fight for a social worker. We got one though. But we were held at bay for ages. Just email head of children’s social care. I think they are failing in their safeguarding duties by not assigning you one. Which l would put in your email.

Sadly as parents of these children we have to change from normal parents to fighters.

Op do you know what she's browsing on the social media platforms, do you have an access to check it?
Do you have any control over it?
Can you restrict access to it?

There are some seriously creepy things that can just fuel her anxiety and depression, she can be possibly in contact with someone who may have a very bad influence on her.

@RyanLondon thank you for starting this thread, and for everyone else's posts. Sorry for what you are going through. To answer your question about what DD stands for: it's 'darling daughter', DS is 'darling son'. It's an odd Mumsnet thing!

Thank you also to everyone upthread for all of your posts. It makes me feel less alone, and more hopeful. It is so helpful to hear other people's experiences, especially when in real life we often have nobody who really understands or 'gets it'. It's validating to hear the emotional toll that it takes on us, and that I'm just not being pathetic and weak for feeling very scared, lost and overwhelmed.

Experiences of other parents who have had to take their children out of the usual education system, and essentially take a complete step back from 'normal' life to allow them to get well is reassuring to hear. It's something I often consider for my DD (14), but she is stubbornly against it.

She has had an awful few years, when 11 she was been diagnosed with ADHD, anxiety and depression. Manifesting as in a suicide attempt, self harming, panic attacks, difficulty with friendships, and harmful coping behaviours such as vaping, comfort eating, and seeking validation from boys.

I had to go privately for a psychiatrist diagnosis and treatment, who prescribed citalopram (not much effect), then sertraline (caused daily fainting episodes), and now settled on fluoxetine (a high dose of 40mg/day). She also takes her ADHD medication which helps with racing thoughts, overthinking and concentration.

It took a year and a half to be seen by CAHMS, who have taken over her care from the private psychiatrist and private therapists. I am very appreciative that she/we are having a positive experience with CAMHS so far.

Someone upthread mentioned PMDD - premenstrual dysphoria disorder, something that I suspect my DD suffers from. I don't think it's coincidence that her first period started the evening that she was admitted to A&E with her suicide attempt. Hormone fluctuations may not cause her MH issues, but certainly exacerbate the anxiety, depressive thoughts and ADHD. She is on the oral contraceptive pill taken continuously to avoid the hormonal fluctuations.

Thank you @ArseInTheCoOpWindow Arseinthecoopwindow for your insight in to the possibility of extra help available.

@RyanLondon have you ever considered Northern Ireland as somewhere to relocate to? Relatively cheap houses, space, beautiful countryside and coastline. Holywood/Helen's Bay are lovely.

@sarsums @ArseInTheCoOpWindow
Interesting to hear you mention Adhd meds along with AD.
My DD is on fluoxetine which isn't helping. She has recently been diagnosed ADD and we are yet to start medication.
I am not trying to be too hopeful but keeping fingers crossed the medication helps her with sadness.

I have observed additional suicidal thoughts few days before period for atleast 4 months now.
GP has said she can try the pill back to back but it's another medication to add to the ever expanding list so I am holding out.

OP,
I hope you can get some respite from all the excellent advice on benefits on this thread.
I have realised there is so much to learn on this MH and ND journey with the kids.

Xx

@DarkChocHolic
My dd takes the mini pill. This has almost stopped her periods.

Sometimes I feel a little guilty about my son having 'no education' as I 'have an education' ifkwim. But i just think there's more than one way to skin a cat. My education has been shared with my son and gave me the confidence to do life the way HE needed, rather than how society expects.

One tiny positive is that we really didn't need any entertainment money and it was actually fun dredging up anything practical i had ever learned, I drew the line at darning 🤪 but we did wander through the house with a spirit level and step ladder. He's tall and I'm short so we decorated at the same time. The dog really helped too as a joint caring focus.

Don't be swayed by professionals if your instincts tell you they're wrong, you know your daughter best. Therapy does NOT work for my son, it makes everything much much worse.

Currently we are making a folder together with step by step instructions and pictures. How to make a doctors appointment, how to get me cremated 🙄 (his choice of topic), how to find a plumber.

I never dismiss an anxiety, we address it, make a detailed topic for the folder and add it. It helps his anxiety enormously.

Therapy did nothing for my dd either .

I applied for PIP for my dd

I was amazed she got it. She gets £104 a week and it's not means tested against us

It's will help pay for transport when I can't take her somewhere as she can't seem to pass her driving test so we are having a rest from that.

The form is long and has to be filled out correctly to get the points required. They want you to say thing like

"Daughter will not feed herself if left alone. She will go hungry as she forgets to eat and prepare food. She will eat snacks over making a healthy meal as it's too much organising". There is advise online or you can go to citizen advice.

My son was put on Quetiapine as an addition to an anti depressant to try and enhance its effectiveness. It didn’t work, he stopped the antidepressant & stayed on Quetiapine for a bit. It helps sleep initially but then the does needs increasing. From memory I think it can lead to weight gain & it can affect the brain making sleep v difficult for years after stopping it. Unless she does have psychosis, I wouldn’t agree to it. I found CAHMS shambolic and was son I ever took my son there.
when he turned 18 he was referred to Adult Mental Health Services, they kept saying he must be autistic so we cannot offer therapy or anything else until he is assessed. The only thing they offer is more and more medication, trying one thing after another. I suggest making formal complaints and contacting PALS for advice too and they may begin to listen to you. Eventually he was diagnosed with ADHD which can apparently also lead to a hyperactive mind.
He himself refused all medications in the end and is currently doing well playing sport and doing a physically demanding job. It has been a long path getting where he is now and lots of other things happened in between. I would try your rural solution, it may work. Sounds like it would at least be worth trying.
Wishing you luck and success. Keep fighting her corner, nobody else will

I found the opposite with Quet@Ihavethis2 . It fixed my sleep even after I came off it (I was only on it for a few months though)

It did cause some weight gain though (well either that or the citalopram)

My son refused medication and started using an exercise bike for 40 minutes daily. The weight from stress eating fell off him and I think the routine and the dopamine helped a lot. Also, this sounds weird i know, i turned the little used dining room into his 'office' and he goes there to do his bike, weights, gaming. Somehow it just works better than just being 'stuck in his bedroom'. I'm so so glad I'm single, i don't know how i would have been able to accommodate other people's needs too. But maybe it would have been a wonderful support. If i didn't have a dining room i think I'd have done something with a shed or garage.

Sounds awful.

Does she have any thoughts about where she wants to live?

Would she be willing to do something totally different for a year- eg go travelling with your wife. I understand that might be the completely wrong thing but perhaps she needs to get out of the current situation and inknown triggers

its might be worth looking at alternative parts of wales, close to areas inwhich home schooling is popular. Often these areas can offer more accessible activities, for when she’s eventually ready to take steps forward

Hello OP, I have a DS with autism who has had MH issues and while our situation is nowhere near as difficult as yours I did have a few thoughts I wanted to offer.

Have you heard of autistic burn out? It's possible that your DD has burn out in addition to other MH problems. You mentioned how your DD can't cope with noise, crowds etc - my DS was like that.

One thing that really helped for us was reducing sensory input. We moved him into our spare room, which is completely blank and plain with hardly anything in it, and we used white noise to help him sleep.

People often suggest talking therapy, but this isn't always easy for autistic people. For my son, reducing the pressures and sensory overload was the thing that helped get through the worst bit.

If you are worried about keeping your DD safe at home, could you think about installing a contact door alarm which you can set to go off at night if she leaves the house?

Finally I was going to ask if you had considered the forest of dean as somewhere to live. Properties are cheap and your DD might find it easier than rural Wales, where she could feel self conscious as obviously English.

Best of luck with everything.

More rural might be good, but also uprooting from all she knows and friends could be a turn around or a tipping point.

Wales has the possibility of being very isolated. Hard to say. Perhaps Somerset or south wales might be better.