At my wits end

[WhatsitWiggle]

DD is 17, diagnosed with autism 2 years ago, extremely high levels of anxiety and now OCD. She's been getting worse and worse, restricting food and now self harming (cutting and head banging). She's known to CAMHS and local eating disorder service for over a year but still no therapy. We're regularly in contact with the Duty team but all they do is give us / her helplines to call. She won't talk on the phone.

She has today announced she is going on hunger strike until she gets help, and the cherry on the cake is that she punched me hard on the arm which has bruised - she's never deliberately hurt me before.

I'm at a loss as to what more I can do. Social services will only offer Early Help, I've had that twice but it's pointless.

She's not at school/college so no help there.

I don't know what else to do.

There are services that are effectively helplines but not telephone based.

kooth is quite good.
https://www.kooth.com/

she could also try emailing the Samaritans
https://www.samaritans.org/how-we-can-help/contact-samaritan/write-email/#:~:text=jo%40samaritans.org,-Response%20time%3A%20It&text=Writing%20an%20email%20can%20be,any%20time%20day%20or%20night.

What kind of help does she want?

You could contact the Autistic Society, Young Minds, NHS Direct or try Hub of Hope to see what services are in your area.

Have you heard of PANS / PANDAS OP?

panspandasuk.org

She wants the intrusive thoughts to stop, which need medication and CBT. As she's under 18, only a psychiatrist can prescribe.

It's been a hellish 2.5 years already and I'm exhausted. I can't keep her safe from herself anymore and it's breaking my heart.

Just needed a safe space to vent.

What medication does she want? Some Gaps will prescribe SSRIs at 16.

Is she on Melatonin too?

And had she tried any of the online CBT courses?

Probably not helpful but it is possible to see psychiatrists privately.

they will prescribe.

you’d need to get her to them though.

She can do CBT free here:
https://beatingtheblues.co.nz/

Here's a meditation tool
https://www.pixelthoughts.co/

You can find a private psychiatrist here
https://www.privatehealth.co.uk/psychiatry/specialists/

There's information here on self harm
https://www.mind.org.uk/information-support/types-of-mental-health-problems/self-harm/

Beat have a good helpline for eating disorders.

Have you spoken to the Birmingham Food Refusal service too?

Has she got a Disability SW too @WhatsitWiggle?

No local authority contact - because she "only" has autism and not learning difficulties, she doesn't qualify for disability support from them. And because there's no other children in the household at risk, we don't qualify for a social worker. She can hit and punch me as much as she wants, apparently that's ok because I'm an adult. Their only recommendation was to call the police.

The only thing they offer is Early Help, which involves someone coming round every couple of weeks with a list of websites and charities to contact (all of which i have done), some parenting courses (likewise) and asking me what I'd like help with, as long as it's nothing medical because they can't help with that.

She won't engage with the eating disorder team because they told her she'd only get psych help once she was weight restored. She did that in March, no help came. So now she doesn't trust them. In her words "I won't eat and I'll end up in hospital and then they have to help me". Strong black and white thinking.

Thank you, she doesn't have ARFID. It's atypical anorexia nervosa only now she doesn't want to eat. Whereas before she wanted to eat, but the eating disorder wouldn't let her.

It's a pretty common thing for GPs to say, but they can medicate. Usually they refuse because they want psychiatric oversight, but many places have a phone line for GPs to call and get advice/supervision and support to prescribe.

There's also more therapies than CBT, though not all CAMHS offer them. Sometimes the wait is longer, sometimes it's much shorter.

@DeepSpaceGarak thank you. I'm calling CAMHS tomorrow to see if there's any right to choose option. A psychologist i spoke to on Friday said there's a specialist OCD centre at the Maudsley and if my local CAMHS don't have the resource, I could push for them to fund. I don't know how long that would take but it might make a difference.

We managed to get melatonin via the GP after the sleep clinic told her it was a 12 month wait list but the GP could precribe if she wanted! I'll ask if there's a similar option for fluoxetine. DD and I have the same GP, she's well aware of the challenges.

I'm conflicted on the CBT as I'd heard DBT is better with autism, but CBT is "gold standard" for OCD apparently. We briefly tried BWRT with a therapist about 18 months ago but when DD took her overdose, the therapist said she couldn't work with us anymore. I'm desperately trying to find a private psychologist that can offer face to face but nothing so far (20 contacted!).

I'm off to bed now as DD has turned in. Thank you everyone for suggestions and a hand hold.

@WhatsitWiggle
I'm conflicted on the CBT as I'd heard DBT is better with autism, but CBT is "gold standard" for OCD apparently

Mental health research isn't the same as physical health, and CBT is the gold standard for a lot of things that other therapies can be better for. Ultimately, it's more about your child matching with a modality of therapy than it is about what kind of therapy is best for the problem.