My dd with OCD has been referred to the Education Welfare Service

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My daughter is 14 and has had this latest bout of OCD for two years now. She showed the same symptoms for a few months when she was in Year 6, but they then went away.

This time they haven’t however and it has really impacted her school attendance.

Her OCD manifests itself as her having to wash her hands a lot, wash her clothes in a certain way (only she is allowed to do this and she will wash them again if I do so much as hang them up) every night before school, spend a long time on the toilet it the morning and a very long time in the shower. No one is allowed in her bedroom and she probably has other “rules” that she keeps hidden.

She is rigid in her thinking, and though it has shrunk her life considerably, she has her routines pretty streamlined now. They massively impact the times she can get to school however, and I have tried all kinds of things to no avail (her Dad moved out in April).

She refused to go to the GP when all of this started and we got her initial referral to CAMHS via her school, who listened to what I was saying and who could see her dry and bleeding hands (her hands are better now as I suppose the skin must have hardened). I also took her to a walk in centre on one occasion, and went to the GP on my own to talk about her.

When she did go to CAMHS, about a year and a half ago roughly or a bit more, she told them she didn’t want to be there or receive CBT, so they discharged her saying that unless she was a willing participant, it wouldn’t work.

Eventually she agreed to see the school counsellor - an Art therapist - and saw her for about 5 or 6 sessions, before deciding to stop.

During this whole time the school has authorised her absence, so there were no repercussions there. I would say they were also a bit slow to act and let her get on with it for a good while.

This Autumn term just gone they took the case up again (I was also keen for this to happen) and, under the aegis of a new EWO, started not authorising her absences. They put in place a reintegration plan but while on some days she did really well, on others she didn’t at all.

So now they have referred her to the EWS, and I have only just received the letter.

This term they have also re-referred her to CAMHS and she is on the waiting list.

The problem with this is that she is EXTREMELY stubborn and will again refuse to go. Going might hopefully help her and will also provide enough medical “proof” for the EWS.

I cannot explain how stubborn she is and how little she takes on board what people say.

So now I am scared that I will be fined (which I cannot afford) or prosecuted.

What can I do if she refuses to go to CAMHS and her attendance at school is still poor?

What other options might there be for her education other than mainstream school.

I was just reading about convictions and scaring myself.

I should add that the letter from the EWS was the opposite or supportive, even though the EWO writing it knows my daughter’s circumstances.

I have the feeling that she does not really believe what is happening. People think that it is as easy as telling someone to stop their symptoms, but it isn’t.

Opposite of supportive I meant. I think it is the EWO who doesn’t believe the OCD really, or doesn’t understand it.

You can home educate or use a home education system like Interhigh but its a few thousand a year.

Only other option can think of is would she go to school with anti-bacterial gel? Or anti-bacterial wipes? Not a long-term solution but might be a compromise to get her through.

If you do anti bac gel get moisturising one, also worth her getting some mositurers to help hands get back to normal.

Thanks for your reply.

She is okay once she is at school - it is the getting ready for school in the morning which can take literally hours, and which impacts her attendance.

Does anyone have experience of the EWS? Am I going to be prosecuted? Is that a criminal conviction and how would I ever get a job again?

Also, I can’t afford to stay at home with her.

I try to explain the gravity of the situation to her and told her that when her new CAMHS referral comes through she really has to go, but she tells me to leave the room.

She never discusses the OCD.

no advice just sorry you and she are going through this.

That sounds so difficult. I don’t want to add another worry to you but a lot of her behaviours sound like myself when I was bulimic as a teenager. Spending ages in the loo and totally wrecked hands. CBT did wonders for my eating disorder and subsequently diagnosed OCD but I was older and willing to engage. I have a ds who is under CAMHS for his autism and have found them worse than useless. Getting him into a specialist school was essentially a three year fight which is ridiculous bearing in mind the severity of his difficulties. Locally to me is a residential unit for various difficulties where parents and their dc can live for about three months and receive intensive support, is there anything like that

It sounds to me as if you have really reached crisis point. If you continue as you are, then she isn’t going to receive an education. She cannot possibly carry on as she is, and without intervention she will live a life where she won’t be able to support herself, and will be crippled by her mental health problems.

From here it sounds as if she must go back to CAMHS and restart therapy.

Although it sounds extreme, does she realise that if she continues to refuse help, and this escalates, she could be sectioned?

I’m sorry - I totally get you - please watch this video about female aspergers. The mask starts to slip when puberty starts / high school is also trigger. OCD is a symptom of Aspergers - the treatment is slightly different plus you get access to more help in general plus in school as it’s a registered disability. I explain to my daughter she is star shaped and we have been trying to squeeze her into a square space and we need to understand her star shaped needs. I have not yet gotten her to agree to treatment for ocd but she recognises although she is good one to one with friends she struggles to be amongst groups. So she has agreed to therapy related to learning to be good in groups. My daughter has good eye contact, is kind, witty and thoughtful and has had a best friend since she was very young. But with female aspergers the girls analyise social situations subconsciously to work out how to fit in. The analytical part of their brain goes into overdrive and hence they analyse everything. The cleanliness is both skin sensory plus they feel better if clean so helps them feel they will be more confident in social situations.
My daughter also refuses ocd help and she suggested I go to the therapist and come home and work with her which is what we are doing but we have gone private. We think she refuses help because she can not keep the mask up infront of a therapist.

Who is with her during the day when you are at work?

Sorry I wanted to add that stubbornness is self preservation - she believes her beliefs keep her safe. The ‘getting stuck’ behaviour is very well known as an aspergers trait.

A few things :
-Does she have an official diagnosis of ocd?

• if so can gp/Camhs provide a supportive letter?
• have you had any meetings with the school and discussed a part-time timetable for example starting at 11am?. If the school put this in place and your daughter was managing it then this would help put ews at bay

Sorry one more thing - it is thought that eating disorders in this group can be related to rules rather than body image. If she has rules around eating food this is also a red flag.

So is her dad not involved at all in her care?

I try to explain the gravity of the situation to her and told her that when her new CAMHS referral comes through she really has to go, but she tells me to leave the room.

Would she read it if you wrote it down?

Look up schooling under medical need.

Does she say why she doesn't want treatment? Why is continuing the way she is better than recovery? Is she concerned about confidentiality? Is there something else?

What would need to change for her to want to go?

Thanks for all your messages.

I have thought about Aspergers before as a possibility, as have the school counsellor and her Head of Year.

Around food she is okay - she eats very healthily and more than enough, albeit nothing while she is at school presumably due to her issues around hygiene.

Her Dad is at the house every day of the week while I am still at work and so sees her and her siblings for about 2 hours a day during the week, and at weekends if they agree to go out with him (teenagers glued to their bedrooms).

She doesn’t like him getting too involved as he has a tendency to get too short tempered and this has happened in the past.

I have also written to her about stuff but she either doesn’t read it or tells me to stop.

I had a friend staying until recently, so she was generally aware of my dd and if when she left the house. She is very straightforward and goes straight to school from home - it is leaving the house which is difficult.

The “slipping mask” theory is very interesting iitakes.

I don’t know why she won’t go for treatment - she won’t say, but she can be very vocal in her opposition to things.

What does she do during the day when she doesn't go to school?

I'm so sorry your daughter is going through this.
Sometimes, to be able to access CBT and other support, and talk more openly about how OCD thoughts are controlling their behaviours and routines, children need to be medicated first. Once the anxiety is more under control, then they are more able to engage. Once the CAMHS referral comes through it would be worth talking about this.

OCD UK may be able to help - that all sounds like OCD to me, I have ocd. I have a son with Aspergers - no OCD - who shoool refuses at times too and ultimately they can fine / imprison but it is a last resort. Since October I have been freelancing from home partly due to school refusal / school sending him home. We are not at EWO stage yet but are at 89% attendance - half school sending home, half school refusal. My son with Aspergers has obsessions but they are very different and make him happy. The conditions can co-occur though.

Recommended treatment for ocd is CBT therapy but long waiting lists and variable success.

It maybe worth explaining to her the severity of the problem - maybe e-mail her a copy of the letter and explain you can be imprisoned or fined - and ask her to think of a solution but give her time, don't just expect an answer immediately. My guess would be she regards her room as clean but not the rest of your house. Can she do as much as possible night before and keep things in her room - its not ideal but help takes a long time and its managing the best you can until then. Set her alarm earlier? Have an area just she uses? Also speak to school senco but it is a very misunderstood condition.

I’m so sorry your daughter is experiencing this.

Just to say she isn’t being stubborn- she is ill. Not getting at you but it would be helpful to frame it that way with the EWO too.

I developed OCD at around 13 and was at times very resistant to treatment. It wasn’t stubbornness, it was absolute fear that if I stopped my rituals and compulsions either myself or my family could die. I believed my behaviour was correct and the best way to keep everyone safe so could see little reason in treatment that tried to stop me doing things my way.

CAMHS are correct that she has to be a willing participant but I see no reason why they shouldn’t have another conversation with her now. She’s likely to be distressed by her intrusive thoughts too and may be willing to begin with tackling those before facing her contamination fears.

Another one here wondering about Asperger's. My DD has ASD/Asperger's with demand avoidant traits , wasn't diagnosed until 17, had (still does have) previous diagnoses of OCD and GAD. Sounds so like her!
I think you may need to get her to listen to someone else saying what you have said.

Hello, I have/had severe OCD since I was a child. It took me HOURS to get ready in a morning as I needed to feel clean enough and that the house was clean enough for me to leave school. Like your daughter, I was also very stubborn about receiving help. I thought everyone else around me was the problem. I couldn't understand why nobody else needed to wash every item of clothing they own several times a day! It wasn't until I was a little older (about 16) that I realised I wasn't like everybody else. I lacked awareness and it sounds like your daughter is in the same boat as me. As sad as it is, once I realised that I was viewed as a bit of a freak by my peers I decided to get help. I got therapy, and I still receive CBT now. I'm now 28 and although I still have to do a decent amount of cleaning a day to function I am no longer washing my hands until they bleed. I don't know enough about the school related stuff to help unfortunately - however at my worst points my mother did go to my GP and manage to get me long term sick notes. I don't know if that would be an option for you?

I just wanted to post this so you know that it can (and will!) get better