OCD

[mum2anxious]

My lad (18) asd and SM has recently developed OCD, tells me he has to check everything, has to leave his phone behind so that he doesnt exhaust himself constantly checking it, says he wakes up in morning with obsessive checking thoughts. He also constantly pulls his eyelashes/brows and now very recently has started to have to 'clear his throat'. I am really worried about this - he never did any of this before.( well he says the brow picking started in Y9 when he was so bored in a lesson at school, but it wasn't constant. He's been out of school now for 4 years but he didn't start this big time until about a year ago. He has also had a few instances of 'dropping things, one was a hot cup of coffee that fell out of his hand. is it possible that the ocd has its origin in a physical health problem? I'm so worn down by the battles over education and currently trawling through the ehcp, that I just haven't had the energy to see to this and now i am suddenly acknowledging how much I am actually worried about HIM rather than the stupid education fight. I really am starting to feel I cannot cope with all this, after so many years sustained effort, but if I let go now he will lose everything, mind you he's never had any of it anyway! but i hope we're on the brink. i know Im not the only one, but have any of you gone to Drs about the stress this is causing YOU - is there any point?

[DigestiveBiscuit]

I haven't really needed to - they always used to talk about it, even when I'd gone about some physical health problem. Social Services told me to go to counselling!

Dd2 was SM from time to time at school, and she tells me she developed OCD when she was 6, although I only realised all this when she was 18. She was subsequently diagnosed with generalised anxiety disorder, but she and I were stressed about the same thing - Dd1!

I don't know about physical causes for OCD, except genetics - DH has OCD, but a different form from DD2. There may be physical differences in the brain, although like all these things, I guess it's a mixture of nature and environment. If Dd1 wasn't disabled, Dd2 might have been ok?

Counselling helps - just having an objective outsider to give practical advice on how to handle all these problems from an emotional point of view. Number one was to set aside 1 or 2 days a week to do what I enjoy! Also, her question always was "Do you want peace or drama?"
, while talking frequently about setting boundaries on what distress I took from Dd's.

The problem is that they try to impose OCD on you - for example, Dd2 might say to me 10 times a day, that I should not cut up raw chicken on the bread board! Now, I say to her once "I never cut up raw chicken on the bread board as I don't want salmonella any more than you do - and I am not saying this again!"

[DigestiveBiscuit]

CBT did not work for DD2; she said the tasks were too big for her. For instance, she can barely eat in front of other people, outside the family. She always chose the smallest thing at lunchtime at school, like a roll to eat in front of her friends. The CBT counsellor set her the task of choosing one more thing, like a biscuit to eat as well. DD2 said she just could not do it!

Push for CBT, but also ask about anti-depressants - they worked far better for Dd2 on the OCD.

[NoHaudinMaWheest]

Hi my ds 19 ASD and had very severe OCD now much better but still there. It is extremely wearing and can affect the whole family.
CBT is the treatment of choice but can be tricky with ASD. Ds was never able to do more than the B bit. I should imagine SM would make it even harder. Medication did help ds considerably but it is not a total cure.

I have been seeing a psychotherapist for years myself and it is what keeps me sane and able to carry on. It is private which though pricey means that I am confident that there is no overlap with services for the dcs and also gives me some flexibility in terms of times of appointments which is vital.

You do have to have the right therapist but then it can be invaluable.

[mum2anxious]

thank you to everyone for replies. He was recommended to have CBT 6 years ago - but could we get it?!!! CAMHS - utter nightmare and caused him trauma. He is not completely mute these days, he's low profile, so is willing to try and talk but needs a nurturing approach - which is the exact opposite that we got from CAMHS and he left worrying that he was going to be taken away from us. finally we now have it in his EHCP, but Ill believe it when I see someone actually do it.
I have avoided going to quacks re my own stress as I don't want everything I might go there for to be ' stress related'. I did some years ago ask for some happy pills but i got told I needed HRT instead!! what i actually needed was the EP and other professionals at school to stop colluding their lies.
The trouble is, its the SEN system that has caused most of the trouble.If Id put the energy into home educating and not got involved I think my whole family would be in a much better place. What a pity hindsight happens after the event!

[DigestiveBiscuit]

Dd could not get a referral to CAHMS, as she was 16 and the GP said they would reject the referral. However, when she got to 18 and we tried again, she got CBT through IAPT - at our GP practice.

[NoHaudinMaWheest]

Ds couldn't cope with standard CAMHS stuff. He eventually got a referral to a specialist OCD clinic (and was an inpatient there). They knew their stuff and he improved greatly. When he came home we had a much better psychologist who was also advised by the specialist clinic. It was still hard work though.

[Ineedmorepatience]

Daft question for digestive , have you ever read any articles about undaignosed Asd in women? Your Dd2 has some of the issues I have been reading about time and time again!

Feel free to ignore!

Mum I have no advice sorry but you are right about the damage caused to everyone when fighting for provision in schools! I hope you can get your Ds the helps that he needs!

Good luck

[DigestiveBiscuit]

Ineed - I have been wondering for years about Dd2 and ASD! I sometimes wonder if the borderline personality disorder is really ASD; or is partly a result of undiagnosed ASD. However, many of Dd1's friends were diagnosed ASD, and I can't say Dd2 meets all the criteria:

1. she never played with toys, in an unusual way like lining up cars, etc
   
2. I can't say she had a special interest until her teens - actually apart from a few girly pastimes like shopping, pop music and her degree subject, she's not interested in anything. She never reads anything, never watches the news, never reads a newspaper - has no general knowledge whatsoever, except what she's done at school or uni! Very unstreetwise!
   
3. never needed routine as a child, although we lived in one, because Dd1 needed it - but Dd2 never got upset, if I suddenly sprung a change of actitivity on her
   
4. no sensory processing problems - where Dd1 obviously does have them
   
5. eye contact is ok - whereas with many of Dd1's friends, it was fleeting
   

However, she did:

1. have great decoding skills, but could not get the gist - she never reads books, because she can't understand them
   
2. had great difficulty in putting her thoughts together in written work such as a story at primary school, or later an essay (could easily spend 3 hours rolling around on the floor in tears, when supposed to be starting an essay, and it took me until she was in the 6th form to teach her how to construct an essay)
   
3. doesn't lack empathy - she can show it, but it does not come easily all the time! If I was dying on the floor, she'd step over my body and ask "Well, who's going to cook my dinner?"
   
4. really can't understand what we are talking about, when it comes to social niceties - she'll write to a teacher "Dear Miss X - I need a reference.....", where we say "no, no, no - people have a 100 things to do already. You need to ask nicely, if you want people to do things for you - "Dear Miss X - How are you? I hope you are well? I would be really grateful if you could...."
   

She considers her way to be the most efficient and that is all that matters - although she will do it our way, because we tell her, she's being rude, but she can't see why!

1. friendships seem to us to be one way - her way
   

I've come to the conclusion, she has a lot of ASD traits, but does not have the full triad - especially the need for routine. She's wondering herself if she has ADD, and she is supposed to be having an assessment for it soon.

[Ineedmorepatience]

Hi digestive glad I didnt offend you by asking!

Maybe the Add assessment will throw something up! There is so much overlap between so many conditions!

I guess that living in an autism friendly household would help any neurodiverse person, with or without a diagnosis!

Good luck

[DigestiveBiscuit]

No, I wasn't offended! I discussed it with a friend, with a son with ASD, when I saw the enormous difficulties she had with putting her thoughts together at GCSE and A-level! DH can see it too in her.

[sugaraddict]

mum2anxious, your DS sounds so like my DD who has ASD. I have literally just been having the same discussion with DH, saying that I wish we'd pulled her out of the system and home educated her when she started to struggle at secondary school. Instead we've spent the last 3 years fighting to get support from the SEN system at great cost to our family life. And we've ended up with her out of school anyway and disenfranchised from education altogether. She's 14 now and has a couple of hours a day of tutoring at home but struggles to leave her room. And we're still fighting to get help with her anxiety, SM and what looks like rapidly developing OCD.

I'm fantasising about running away with her, getting her out of the (not helpful) system and making a completely fresh start where nobody knows us. And having a proper life again. Have had various medications and CBT but what I really need is someone just to listen to me vent about the stress of it all!

Anyway, nothing really helpful to add, but just wanted you to know you're not alone

[Lou1820]

Ocd is such a hard one with children to diagnose you just go round and round from teacher,doc,nurse,mental health and back again. My daughter is 12 and has as Iong as I can remember always had severe ocd. We have chose to go private now the priory will officially diagnose and prescribe meds on first appointment then after that treatment will begin. I’m telling you because I wish I knew sooner I know this option isn’t for everyone but at least it’s a option for some price is about £1600k for a outpatient I’m not sure if you can pay in bits but hope this helps some of you. A random thing I have found helps a lot when her ocd is bad is a appointment with a osteopath so would recommend it’s worth a try. I know people have mixed views on other problems if the osteopath always works for them but for my daughter I saw a massive change of relief overnight so for £50 it’s worth a go. I hope you get some relief from this soon as it really is a awful thing to have.