How do I help my daughter?

[Mummadeze]

My DD (14) is autistic (working assessment, full assessment due in the Summer) but until six months ago was more or less coping with mainstream school (unhappy but going) and was fairly happy at home. But since the end of last year she has developed lots of OCD behaviours and her anxiety has gone through the roof. A week and a half ago, she was sent home from school because she was too anxious to cope. She has been very stressed, shaky and unable to function very well since then. I have been phoning CAMHS begging for her to be seen (she has been on the waiting list since November), but no result yet. We saw a private GP who referred her to a private child psychiatrist who basically said she can’t help and told us we had to get CAMHS to see her. Finally got to talk to a clinician at CAMHS and they said go to A&E. Went there and they said they couldn’t see her but to go through CAMHS. At this point, what in the hell do I do? Has anyone had a similar situation who can advise? Am so worried! Thank you.

Hi. There is a Childrens Mental Health board which has other parents of teens. My DD, not ASD, has been battling anxiety and depression since the start of Covid. She missed all of y11.

ASD kids often seem to get anxiety, presumably due to having to cope in a NT world, and school. Autistic burnout is a real thing too.

My initial suggestions would be

• if you can afford to go private, then do so, as CAMHS wait lists can be very long
• start looking into an EHCP if she doesn't already have one, posters on the SEN board are very helpful
• if she can't cope, she can't cope and her MH is worth more than GCSEs.

Find another private therapist? I’m so sorry, the situation with CAMHS is desperate, it was over a year after they agreed ds had severe need that they took him on and even now only for medication review and no therapy available. They know we have been and can (just about) pay for private therapy and their resources are only covering suicidal and self-harming young people with no other support. But just because one private therapist said they couldn’t help doesn’t mean that you can’t find someone who will. Our autistic ds has am ocd related disorder as well and I feel it really got a grip before we quite knew what was going on, so I’d say professional input is really important

Firstly, this is not going to be a very uplifting post, so feel free to ignore. We were in a similar position, but DS masked his anxiety and ended up in an even worse state. Don't want to trigger anyone, but it was as bad as it could get.
It took 18 months to get an appointment with the CAMHS psychiatrist, and he is utterly useless.
Private is the only real option, and even then, waiting lists are months and quality is patchy. Appropriate therapy for autistic kids is incredibly hard to find. CBT is counter indicated, and that's all that CAMHS will offer.
On phone so struggling with links but will try and post some. There is a fab thread on the mental health board for parents of anxious kids.
Oh, and you might want to start researching the EHCP process - it takes at least a year to get support in school...

Therapists: https://neurodivergenttherapists.com/directory/

I’ve never come across the idea that CBT is contraindicated for ASD, can you say more? Just had a quick google and only turned up positive things.

There's a fairly general explanation here: Why Doesn't Standard Talking Therapy Work for Autistic People? - Dr Alice Nicholls

But it's particularly important around anxiety. Standard treatment for anxiety is graduated exposure, often called an anxiety ladder. So, for example, if having an injection makes you feel anxious, then you start by looking at pictures of needles, and using techniques such as breathing to control your anxiety. This is repeated until you can look at a picture of a needle without feeling anxious, and then you move on to, for example, looking at a real needle. For social anxiety you might start by walking to the door of a shop and not going in.

In autism, anxiety is often (always?) linked to sensory processing difficulties and/or sensory and social overwhelm. So going into a shop is difficult because the lights are bright, the smells are strong, people do unexpected things, you are expected to interact with unpredictable PNT (predominant neurotype) people etc. The WORST thing that you can do for sensory overwhelm is to force yourself to stay in the situation that is causing the overwhelm. Autistic people experience this all the time, and get more skilled at forcing themselves into these uncomfortable situations without showing outward signs of their distress (masking). Until they can't cope any longer and they end up in autistic burnout.

Again, the best 'treatment' for autistic burnout (according to autistic people) is exactly the opposite to the treatment for depression and anxiety. For a depressed PNT person, the recommendation would be to maintain connections with friends and families, get outside and do exercise, get yourself into a routine, gradually increase what you can do. Burnout requires reduced interactions, reduced demands, lots of solitude and quiet, reduced sensory input etc etc. Recovery from a depressive episode is usually 6-8 weeks. Recovery from burnout is usually 12-18 months.

Having said all of that, my DS had CBT for OCD symptoms which was really successful! My theory is that there is a big difference for autistic people between thoughts and feelings. Where CBT is around managing thoughts, it can be effective. But autistic people are often alexithymic - they struggle to identify their own feelings and emotions - so CBT around emotions and mood can be much less effective (or even harmful).

Thank you, that all makes a lot of sense. The psychiatrist said the same, that CBT would distress her more. Rest and solitude do seem to be helping so the burnout theory adds up to me. I will keep reading and researching, sounds like CAMHS might not even be the light at the end of the tunnel once we get there anyway.

My ASd Dd had CBT with CAMHS. Made not one jot of difference. She still won’t go to school.

This sounds similar to my DD. Struggled with secondary school, had total burnout at 14 & stopped going to school. CAMHS started CBT with her with a trainee IAPT therapist just seemed to make her worse & she refused to continue. Tried a couple of other things including Early Help family support & was allocated a brilliant worker who told me my DD had to have an assessment. At 15 started seeing a private psychologist and had an assessment (which also involved a paediatrician) & was diagnosed with autism and OCD traits. Saw psychologist for weeks who slowly introduced her to doing small thinks at a time like walking round the block as by now she was in her bedroom 90 per cent of the time. At 16 was seen by CAMHS and prescribed setraline & this is what helped her a lot. She never went back to education but is going ok.

Yep, things that have helped for DS/us:
No school for 2 yrs (he still took maths and English GCSEs at home with an invigilator, but did no work for them. Luckily he's very bright!). He wants to go back but will need special school - we have tribunal for EHCP Section I in a month.
No pressure
Loads of time alone
Finding things that he enjoys doing - art, creative writing. We started really small - colouring books, modelling clay.
Sertraline (started on Fluoxetine, which is first line for adolescents. This helped with mood, but sertraline has been better)
Caffeine - equivalent of 2 cups of coffee per day. He's now diagnosed with ADHD (inattentive) and starts meds next week.
Communicating in ways that suit him - texts, gifs, sharing interesting youtube videos

There's a good book 'Never Let Go' and a related FB group called partnering not parenting. The take away message is that you can't fix it, all you can do is support and walk alongside them.

If you are struggling to keep DD safe go back to A&E, there will be an on call team they can access/refer to.

If DD can’t attend school full time the LA must provide alternative arrangements to ensure DD receives a suitable, full time education. This should begin once it becomes clear DD will miss 15 days, the days don’t need to have already been missed or consecutive.

Alongside this request an EHCNA. On their website IPSEA have a model letter you can use. The benefit of this is if the LA agree to assess the needs assessment can include OT, SALT, psychiatrist &/or clinical psychologist assessments without the need to sit on the normal waiting lists. And if an EHCP is issued it can include therapies DC wouldn’t otherwise receive, again without the need to sit on the normal waiting lists.

CBT can help those with ASD, but it needs to be adapted and even then doesn’t work for all.

My DD does have an EHCP, I applied myself and supplied and evidence and she was seen by a local authority educational psychologist and it was awarded for emotional, social and mental health. However it has made absolutely no difference so think before you start the process have a think about how it might help

However it has made absolutely no difference

Sounds like the EHCP isn’t fit for purpose and you need an early review, as an EHCP can provide far more support and provision that isn’t otherwise available.

Be prepared for a 2-3 year waiting list for CAMHS the backlog from covid still hasn’t been got through. If u have the money try private, normally for ocd and anxiety they give CBT.

Have a chat with Therese Langford of https://www.facebook.com/calmmindhypnotherapy - she specialises in children's mental health issues and always has a (free) chat with the parents.