OCD advice for teen

[PieLoe]

Hi All
I saw the post on bins and germs recently.
I reckon there must be a psychologist out there or parents who are in a similar situation regarding OCD.

I admit I have diagnosed myself quote ‘armchair’ label.

It’s definitely in our genes. You know it if you live with it. My DD - this is about, she has a long list and is neurodivergent. I was trying to get help all through infants/juniors. Seniors took its toll. The assessment process took so long (with plenty of excuses why they wouldn’t assess) that we went private out of desperation - we researched thoroughly and the report is approved by the nhs. She was by then 15.
I agree with one person who mentioned ‘gate keeping’ - it’s so very frustrating not getting help early.

Someone mentioned before using the word ’quirks’ we call them this also, because she is young and it’s a kinder/softer way of dealing with it all.

The team (NHS) did wonder if she was trying to get on the bandwagon and trying to be trendy re Tick-tock. NOT the case. It’s extremely hard to live with and those that have it can really understand it. They hinted/ documented that they have done CBT, they skirt around it using words like ‘formulation work around CBT’. This CBT has been extremely hard to access.

So I paid privately (2 separate qualified professionals) who are registered and asked do you do CBT for OCD - they both said YES. I put this in black & white. Both let us down whilst taking our money. One made cupcakes & such like to befriend her and one bought a book on Tourette’s (just one thing off the list). No CBT given. Now I’ve lost trust in this system. Need help.

So can anyone enlighten me where we get this CBT that most say is needed?! & really the earlier the better? Her OCD started/noticed age 7.

I know Maudsley London will, do you have to be 18? But that will cost? & it’s getting her to London.

Plus I bought 3 books on CBT for it, but I was advised a parent giving it could do more harm than good. So I haven’t tried but have tried to reason with DD about certain behaviours. It’s just so ingrained.

We're moving this thread to our Chat topic and giving it a bump to get it back into the Active list.

Often people with ASD have compulsive behaviours that are not OCD. They are more of a self soothing behaviour. If the diagnosis is not correct then CBT will not work. In OCD compulsive behaviours are a response to obsessional thoughts which are the core of the illness. The person is distressed by the thoughts and resists them. In ASD the person is soothed by the compulsive behaviour which is not distressing.

The fact the NHS team do not seem to have treated her for OCD makes me question if she really has it. If she has had a formulation from a psychologist then that should guide further treatment. What did the formulation say?

You don’t say how old she is or whether she is now discharged from the NHS.
If she is over 18 she can just self refer to NHS Talking therapies.
If she is under the NHS team then ask them what the next steps are or ask your GP or re refer.
If you get a private therapist make sure they are BACP Registered and share with them the formulation letter (assuming DD consents to do so)

It isn’t usually hard at all to get CBT which is the most widely available NHS therapy so the fact that various therapists have not done so makes me wonder why they feel it is not indicated.

The other trouble might be that you cannot do CBT ‘to’ someone. They have to want to engage with it themselves and want to change their behaviours. If you accommodate those behaviours (implied by calling them quirks) then there will be no motivation to change.

I wondered if maybe the cupcake baking therapist was trying to get DD onside to be able to motivate her or if the OCD is about germs then baking could be an exposure task so I don’t necessarily think the cupcake baking therapist was off track. What were your expectations? Did you ask her to explain?

OCD is one of the most frequently co-occurring conditions with high functioning ASD so it's shocking that she can't get CBT on the NHS and they're implying that she's making it up and following a trend. It's also awful that she couldn't get early intervention when it was less ingrained.

That said basic off the shelf CBT can cause more harm than good if it's not adapted to suit someone with ASD and in my understanding there have been some questions about whether it actually works for people with ASD (although I think it's generally accepted that it does if it is adapted to the individual).

It sounds like DD might have a diagnosis for ASD but not for OCD, is that right? Or does she have a diagnosis for both? You say it's an armchair diagnosis but then talk about assessment so I'm not sure. If she's not diagnosed with OCD then I'd start her on that path. I'd stop reasoning with her or reassuring her, OCD is not rational and reassurance can help in the short term but often makes things worse long term.

I'm not an expert but I don't think making cupcakes seems like a bad thing, they are going to have to build up trust before they attempt anything remotely challenging. Obviously you need to know they are BCAP registered and their qualifications and experience in advance but making cup cakes doesn't sound like a bad way to start.

Does she also have tourette's syndrome? Having a book to help her understand might not be a bad thing. I'm concerned that you are looking for something that immediately tackles and quickly cures her issues. That is not how it is going to be, this is something that is likely to take months.

Have you seen the Mind/Young Minds pages on OCD, you might have already seen already but there is quite a lot of info if not.
https://www.mind.org.uk/information-support/types-of-mental-health-problems/obsessive-compulsive-disorder-ocd/for-friends-and-family/

www.youngminds.org.uk/parent/parents-a-z-mental-health-guide/ocd/#AccessingtreatmentforOCD

Is she on medication? There are things that can help with both OCD and Tourette’s. Again if Tourette’s is officially diagnosed I would expect her to be under the care of a specialist who could discuss medication

If you can afford private look at Stepping Stones.

Did it come on very quickly? After an illness?

If she had autism then CBT is not recommended - she needs to see someone who understands neurodivergence, not someone who will try and change her brain.

https://pubmed.ncbi.nlm.nih.gov/39805042/

I keep seeing this bullshit that CBT is ‘harmful’ or doesn’t work for autistic people

NO evidence at all that it is harmful
Plenty of evidence that it does work
However it works better with adaptations

When people believe a myth that CBT cannot help in people with ASD all it will do is disbar them from getting any help at all as it is pretty much the only therapy the NHS will offer.

Incredibly helpful. Really appreciate all of your input and links.

New on here, I wished I had come here years ago.

It started when DD was 18 months, I saw it, relatives didn’t understand it & judged. The help has been so slow. A label can really help. It’s so stressful when you don’t know what it is in order to get the right help. She’s 16 now. She has lots of diagnosis including ADHD and ASD. Yes she definitely wants the help -CBT. She definitely can engage, good intelligence/sensible for the most part.

So the formulation part was looking at the usual chart and discussing it. See pic. The OCD part- they have only documented ’traits’ so yes I will go back to GP and ask for a referral somewhere else.

(Perhaps it was too complex but I asked for a Great Ormond Street referral for it and got refused). This list is long - her diagnosis’s.

So she isn’t discharged because she’s on meds. She has now tried 3 separate medications. So they monitor this only.

They offered more therapy, we met the lady, I asked if she did CBT and she said no. So we let it tail off. So on their books it appears that DD has had CBT & had her support but she definitely has not.

We have every book going here at home, DD devours them.

I meant one of the private therapists told me she can do CBT but wasn’t actually qualified because she proceeded to buy herself a book. & the other one, (no it’s not OCD around germs or anything like that). I’d emailed him to say what we wanted- he said yes I can but didn’t do CBT.

This OCD is a definite. She knows it. We know it.
what a hard journey it’s been.

@Tiptopflipflopno - these issues started so young
It needed addressing early. I really tried. Every teacher, GP’s. Got a referral once when she was in Juniors and I was spoken to so very badly- the system doesn’t work. I despaired. Desperately needed acknowledgment. It got worse age 12 when finally a SENCO called me. I told her that I’d been waiting for a call like this for years. Secondary School sent her into turmoil.

@Shrinkholeso helpful, thanks so much. I think she is mature enough to take the CBT and decipher it/question it. She really wants to help herself. Thats positive.
We’re grateful to have such a lovely DD, life is never dull :)
Appreciate the quirks explanation too, I see it now. 👍🏻

So she sees a psychiatrist about the meds? Couldn’t you use that opportunity to ask the psych if they have made or will make a formal diagnosis of OCD? Then ask the psychiatrist about medication and CBT for OCD and ask them to explain to you why she was not offered it? If you are not satisfied with their response then put in a formal complaint via PALS. I would do all that before going off piste looking for private options.

I assume GoS is a highly specialist tertiary service. They will not take someone who has not been recommended by their current CAMH team after exhausting all options there. I am surprised your GP agreed to refer as I think that was always going to get refused without the support of her current consultant. Can’t you ask the current consultant if they think she needs a specialist service. If so they could refer and it will hold more water.

@Shrinkholethanks for taking the time, thats an excellent plan. The psychiatrist though will feel they did the CBT because a colleague of hers (psychologist)has documented DD had it already. Not the case but it’s in the notes. If I go to PALS they will see the notes & argue DD has had it too. DD knows she hasn’t had it - most definitely not. Strangely we never even had an appointment with this psychologist! Instead we saw students (& it was one of them that said that comment re tick-tock)
I will discuss it again re formal diagnosis of OCD. I have to admit it’s a complex case, it’s probably beyond them. I’ll try again. It has been such a long time without the right support but maybe when shes 18 things will improve. 🤞🏻

My OCD started aged 11 and I finally managed to get CBT on the NHS at age 40!

@Shrinkhole I asked for the specialist service- no luck. I’ll ask again 👍🏻

@candycanetimeoh really? I’m so sorry that happened to you. It’s unbelievably frustrating. Was it helpful? Hope so after that loooong wait

I think that you should speak to the psychiatrist again and ask

1. does she have a diagnosis of OCD and if not will he record one? Is she on medication appropriate for the diagnosis?
2. ask for another go at CBT (why would you be limited to once if the first one didn’t work?) It is normal for a psychologist to supervise a trainee psychologist to manage some cases (or how would anyone ever be trained) but those would be the more straightforward cases suitable for a student usually. If it didn’t work or wasn’t what you were expecting you are entitled to an explanation.
3. if the above fail make a formal complaint about not being offered appropriate treatment for her diagnosis. However you have to try to resolve it informally with them before you do this.

@Shrinkholethats really clear 👍🏻 thanks again.
With so many issues they are just trying which meds help overall. 1st meds were for ocd and Tourette’s, 2nd meds were for anxiety, this 3rd trial is for adhd.

I did complain once about how long we’d waited for a neurodiverse assessment and how long this issues were going on without any help. It actually made matters worse thats when we got excuses about why they wouldn’t assess.
In Infants & Juniors they were very fierce about documenting ‘nothing to see’ even though it was evident.

This isn’t the only battle of course, EHCP was another battle - which still has never been a clear/concise report- it looks unfinished with strike outs.

Anyone who knows it, we need a secretary and you can’t work full time with the battles that need doing. It is constant.

The comments Ive had over the years I could write a book!
Oh that feels better to vent.

I’m a therapist who works in this area, CBT is quite difficult often for neuro divergent people and always the first line best treatment, ERP can be difficult for autistic people particularly to engage with. However, EMDR is proving beneficial in this area particularly for Neurodivergent people.

That’s so helpful I will definitely research. These sound modern. Chuffed to get so many ideas.
Appreciate all the advice

If it started at 18 months it's unlikely to be OCD as children that young don't have the cognitive capacity for the obsessions. More likely to be restricted and repetitive behaviours associated with autism. That diagram you shared is a CBT formulation btw

OCD noticed at age 7.

? What do you think?

Yes the team said we’ve done CBT. They only discussed this chart with DD and documented that CBT had been done. Students. Who were fab by the way. I reckon not qualified to give CBT yet.

Did the OCD come on suddenly at 7? If so have a read about PANDAS.

Thank u. We know about PANDAS. They said unlikely. She said ‘no’ also. She does her research.

👍🏻

The gold standard treatment for OCD is medication (sertraline) and Exposure Response Prevention with an accredited CBT practitioner. I would go back to CAMHS and ask for this, if not and you could afford it the BABCP has a list of accredited CBT practitioners.

A good one will be able to work out the difference in 'restrictive/repetitive behaviours' (ASC) and obsessions and compulsion (OCD.)

OCD UK have excellent resources for parents if you wanted to have a look on there too.