Help - suicidal 12 yo dd w asd

[whosaysIlikerightangles]

Hello, I'm a long time lurker and first time poster (dh always jokes I can find the answer to anything on mumsnet). Having a horrendous week and hoping for some advice.

Dd has been unhappy and anxious for years, exacerbated by me being diagnosed with cancer some years back (fingers crossed am now cancer free). We thought her many issues and meltdowns were due to anxiety, but recently have realised it's very likely she has asd - we're now on the long NHS waiting list as can't afford private.

To cut a long story short, last week we ended up in hospital with dd because she is actively suicidal - through her therapist we learned she has been making plans. Through conversations since it's become clear she's been properly depressed for about 6 months. We have the camhs emergency assessment tomorrow.

She's feeling terrible and like she just wants to be dead. I'm with her almost constantly to keep her safe, and sleeping in her room. I'm not going to make her go back to school before the end of term - we tried for a couple of hours and it was a disaster. She has a therapist (weekly) and we have a bag of stuff to help with sensory overwhelm (slime, stress ball etc). But fundamentally I get that life is shit for her - when she's feeling ok and comfortable she's smart and funny and fun (and she does well with schoolwork), but she always ends up having big issues with friendships and being on the outside of friendship groups, and ends up feeling totally lonely. I understand why she feels there's nothing good at the moment.

We might pay for the private asd assessment but it's going to mean borrowing money (she agrees she may be autistic and now just wants to know for sure). Has anyone got any advice re other stuff that might help? Has anyone done the occupational therapist sensory assessment? I'm wondering what we can practically do to help life feel less rubbish. We are seeing camhs tomorrow but they've not been much help so far. Thanks and sorry for a long post! PS If anyone has been here and come out the other side I'd love to hear something positive because things feel pretty bleak at the moment.

I’m so sorry that you and your DD are going through this. I think it’s good to remove any pressure and just focus on her mental health right now.

Our DD was diagnosed autistic age 3 and SPD and ARFID. She was highly intelligent and academically very able.

Y 10 was when she was diagnosed with Clinical Depression. We spent lots of time at CAMHS. We had a brilliant Psychiatrist but the therapists often changed and she was quite resistant to their input. She also was adamant that she did not want medication.

She had suicidal ideation and I think they trusted us as we were both professionals in the field. It was the day of her sister’s 18 th party when she first admitted this at CAMHS.

Girls on the spectrum often have too much empathy and she was overwhelmed about the impact on us even though we tried not to show it.
We felt that the trigger was Depo ProVera administered to deal with constant menstrual bleeds ( later found it should not have been given to anyone with reduced appetite or anxiety) I blamed myself for that but we were desperate. She had a strong adverse reaction reported by her Paediatrician ( weight loss joint pain bleeding gums)

It was a horrible time but we got through as a family and I’d say she came out stronger and determined not to “ go back there”. She attended school but everything else stopped. At weekends she mainly stayed in her room in her PJs.

I think it would be good to explore diagnosis and a sensory OT assessment.
A safe space at home e.g. tent or under bed area with beanbag/ cushions and lights things to cuddle etc. can be helpful. Those photo pockets that hang on doors are good with photos of happy times, favourite people etc. give positive messages.
Slankets or weighted blankets can help.
CAMHS advised writing negative thoughts on post its ( NATs negative automatic thoughts)and literally swatting them with a plastic fly swatter.

Do you have a pet? When our DD was at her lowest and pushing everyone away our border collie wouldn’t take no for an answer and would push her nose under her arm. So close!

I’d learn about presentation of autism in women and girls. Look for some positive role models
( books talks etc)
Speak to the SENCO at school to see what they can do to help in September.
Explore whether there are any local groups for NT teens. If she can “ find her tribe” it might help.
Sending virtual hugs.

Link below is Rosie King. There’s a Newsround video she made when she was young. This talk is about ten years old.

https://m.youtube.com/watch?v=jQ95xlZeHo8&pp=0gcJCfwAo7VqN5tD

I'm so grateful for your reply @24Dogcuddler - thank you, really kind of you to take the time and also offer some hope. Really good to see some positive practical suggestions. Sorry that your family have been through similar.

Our Asd DS has had episodes of suicidal ideation/self harming since he was 8. We were told quite early on to up the happiness eg baking cakes, doing nice things with him by his OT. It sounded nice but didn’t help as he was too sad to engage.

Things that did/do help:

Bean bags
Food that he likes
Gaming as that is how he chooses to regulate when he’s not reading and generally leaving him alone which is counterintuitive.
Except at night when he sleeps with me (Mum) not sure how many years we’ll be able to do that but it’s very helpful for regulation.
The biggest most helpful thing we have done is to buy a puppy, whatever sh*t is going on just having a very happy furry friend takes the edge off.

Best of luck, sorry you are going through this.

Have a look at right to choose for an ASD assessment. Some providers have shorter waiting lists.

Yes, to an OT assessment that covers sensory integration. Make sure the OT has sensory qualifications, training and experience. Not all do. In some areas, the NHS doesn’t commission sensory OT on the NHS. If your ICB does, you may be able to self refer.

School academics obviously aren’t a priority right now. Mental health must be. But I mention the following because school is probably contributing to DD’s declining mental health. What support has school been providing? Does DD have an EHCP? If not, make an EHCNA request - this can include a sensory OT assessment. An EHCP can include MH support beyond what the NHS typically offers.

How is DD’s sleep?

Thanks @BeLimeShaker and @perpetualplatespinning - all really helpful. Re EHCP do you know if she needs a formal asd diagnosis in order to get one? School have been helpful up to a point but we thought dd's issues came from anxiety until very recently - we have only just started talking to them about stuff relating to asd as we didn't know that was part of it.

The above are helpful pointers for me to try and discuss in the camhs assessment tomorrow so thank you.

I love the puppy idea but our cat might not approve! Cat was brought in a couple of years back in large part so she would have a furry friend to rely on, but really sadly the cat isn't massively friendly to DD. Cat is all over me when she wants human interaction and that makes DD feel like even the cat doesn't like her, which is awful. Blimmin cats and their aloofness. Agree that pets are generally a good thing though.

PS Her sleep is always terrible - am going to ask at the camhs assessment re that and melatonin. Emergency camhs gave us promethazine(?) and it's helped a tiny bit but she is still waking multiple times in the night.

Ah, thanks for the tip re EHCNA @perpetualplatespinning - was unaware that was a thing we could ask for but have googled it now 😊

No diagnosis needed for an EHCP
Support and any provision is based on needs not formal diagnosis.
Does the anxiety keep her awake? Would she wear a SnoozeBand? She could listen to calming music or podcasts. You can set them to switch off after an hour.
Masking is absolutely exhausting and leads to increased anxiety.
Martian in The Playground by Clare Sainsbury is a good book for you to read. Anecdotes from when autistic adults were at school.

Nice suggestions, thank you 🙏I am starting to understand how much she has been masking now she's opening up about things - she's obviously really good at it - and yes it must be so exhausting, day in day out

You and your daughter might find this book helpful too
M is for Autism

https://www.amazon.co.uk/Autism-Students-Limpsfield-Grange-School/dp/1849056846/ref=asc_df_1849056846?mcid=205368e5b85b3307b90ee1f97e59193d&th=1&psc=1&hvocijid=5733268036510991488-1849056846-&hvexpln=74&tag=googshopuk-21&linkCode=df0&hvadid=696285193871&hvpos=&hvnetw=g&hvrand=5733268036510991488&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9195089&hvtargid=pla-2281435176698&psc=1&gad_source=1

On their website, IPSEA has a model letter you can use to request an EHCNA (the needs assessment you first request as part of the EHCP process). You don’t need a diagnosis. It is based on needs.

It is definitely worth asking about melatonin. If it doesn’t work, there are others medications that can be tried.

I'm so sorry to hear this, it's such a scary time, my ASD dd has been like this for the last 2 years, and my also autistic ds went through 4 horrible years. Both didn't want to live anymore, dd was actively trying to end it by fully refusing food and drink. Both are now home and recovering and much better - but will never be back to 'normal', as normal was a self damaging act. My experience with my dcs was that when they were starting to open up with me, some of their requests felt totally OTT and giving in to them made me feel like a bad parent and utterly scared of them 'ending up on benefits and wasting all their potential'. But the more I pushed or cajoled or encouraged or even just privately hoped for it to get 'better', the worse it got. My advice therefore is: trust her and try not to be scared but listen and accommodate, accommodate, accommodate. She might want to be alone, in a dark room. I would expect her not wanting to go back to school for a long time, maybe not for many years. She might need 15 hours screen time a day. She might only want to eat chocolate biscuits in her bed. She might not want you to go on a holiday or even a day out for months or years. She might not be able to tolerate you breath, chew, touch her or hear the birds singing outside. She might also ask for things like you watching a movie with her, or just listening to her at the busiest moment. If you can make it happen somehow, try. Take all demands away, genuinely believing and conveying that if she needs to stay home with you for the rest of her life thats OK and you will take care of her. At the same time do tell her how proud you are of her and what you find amazing, impressive and beautiful about her, but not as a demand (not as: 'you are so clever, you should become a great scientist' and all more subtle variations thereof). ASD children in burn out have basically made the experience that life is too hard for them. They have dug deep and tried their uttermost, but failed. It'll take time to recover and learn to live again, and to make positive experiences, but for this to happen not them but their world must have truly changed, otherwise it's just going to reinforce their previous experience and determination to end it all. They'll need lasting changes to lifestyle at home, to the school setting, accommodations in clubs, by their peers, at uni, in a future job - all based on an understanding of their true needs and limits and with the ability to articulate these and enforce boundaries - all this is possible to make life 'good' and 'happy' and for them to thrive, but self-advocacy and putting down and enforcing boundaries needs to be slowly learned, and here I often have dampened my dcs spirit too much by too often asking them to conform and too much worrying about being 'that one difficult child' or 'that parent'. The most effective part of any EHCP or just a school SEND plan I have come across is having a mentor - like a therapist cum PA cum lawyer, who will advocate for the pupil with teachers, also sometimes if necessary with parents, listens, gives advice, helps practically etc. Reverse psychology also helped my dcs: 'you really don't need to do x. If you feel you'd like to try x, I'll help you but it doesn't have to be perfect and there is no time pressure'. Giving autonomy over everything also helped a lot (when, what and where to eat, which subjects to choose and where and how to do them (answer currently: on a treadmill or while chopping vegetables, no foreign languages and humanities, when to go to bed) CAMSH unfortunately has the opposite approach. Their approach is to take all control from the child and 'put the parent in charge of a healthy lifestyle and routine'. My experience is that it doesn't work with autistic children, especiallyif ASD with PDA profile. There is one specialist team at the Maudsley that has adapted their approach to autism, but CAMSH has often made things either worse for autistic children or many CAMSH practitioners will quickly discharge as they say that the patient 'won't engage' if in fact they can't engage. Some individual practitioners are great, but don't blindly trust a professional if it goes against your instincts and distresses your dd, ASD awareness in the NHS and wider medical profession is very low.

Thanks @NellyBarney - really needed to hear this as outcome of camhs assessment this morning was probable appointment with psychiatrist in 6-12 weeks and we need help right now. She doesn't want to do anything apart from hole up in her room watching tv on her ipad and I worry that will make her depression worse, but I think you're right that she needs me to take all pressure off.

PS I am sad to read everyone's posts about their own experiences above - it's awful to see your kid suffering like this and I'm sorry you've also been through it. I'm grateful to you all for sharing.

I would encourage you to keep the school work going if she is bright, but in a different way.

My DS found the teaching at school terrible stressful because it was full of anxiety and nastiness.

I took him out of school and we work from textbooks now and have quite a jolly time of it. The books are much better.

Thanks @InTriplicate Yes school is the source of a lot of anxiety and stress, and the rules and threat 'sanctions' for tiny infractions of the endless rules don't help. Glad to hear you've found a more fun solution!

We are also home educating. It hasn't magically made everything 'normal' but it definitely has stopped the suicidal ideation. We are using a combination of online learning and free material.

Personally, I wouldn’t deregister and EHE. If school is inappropriate, I would pursue EOTAS/EOTIS. An EHCP can fund far more provision, including therapeutic provision, than the vast majority of parents can afford to fund themselves.

Many home educating parents we know haven't deregistered but have kept their dc at home and have provided some form of education at home while sorting out EHCPs etc. Some schools have even agreed to fund online schooling for continously absent pupils outside of EHCPs or have agreements with online school providers (e.g. Academy 21) for some form of dual enrollment flexi school agreement. We had to deregister immediately as dcs were in a private school on scholarships and bursaries and the moment they didn't attend perfectly anymore we were liable for the full fees, which were unaffordable. But at state school, I wouldn't deregister but first be open with school that physical school attendance is causing suicidal thoughts and your dd needs some alternative arrangement, at least for a while.

@NellyBarney I know some DC remain in the system with AP, flexi-school, are ‘just’ absent or many other scenarios. That wasn’t what my post was about. It was about deregistering and EHE because lots of parents deregister and EHE.

@perpetualplatespinning I agreed with you that deregistering and elective HE is not necessarily the best option and should be avoided if possible. I'm sure you know all about AP. I just referred to your post to give OP some examples of how parents of suicidal dcs have managed to continue to educate their children without having them face the extreme stress of attending a physical school. Obtaining an EHCP with EOTAS is a longish process. It's stressful for many parents and children. It might not be in the best interest of a suicidal child to make them go into a physical school until the EHCP is finalised. I therefore wanted to share with the OP some examples of how some form of home education or flexi schooling could look until hopefully an EHCP with EOTAS gets finalised or her dd feels better. Sometimes schools are very supportive and help fund/provide something at home, and there are also free online lessons like Oak Academy.

@NellyBarney OK. Since you quoted my post I assumed you were responding to me directly.

I wasn’t implying parents had to force their DC to attend until they had an EOTAS/EOTIS package via the EHCP, just that I wouldn’t electively home educate.

Even if a school isn’t supportive, it is the LA who is ultimately responsible for ensuring CSA DC unable to attend school still receive a suitable full-time education, and they can’t compel parents or facilitate the provision. Oak Academy wouldn’t relieve the LA of their duty - although obviously that doesn’t mean DC can’t use it as you say.

Thanks everyone - all these thoughts and insights are really helpful, especially with September and the start of the new term fast approaching