Autistic boy aged 10 with OCD diagnosis

[wendihouse22]

Anyone have experience of this? My son is ten (just). He was diagnosed with autism (high functioning) aged 4. He has been on Sertraline now for nearly 4 months for additional OCD diagnosis.

He's in such a state. Checking, washing (hands are raw), won't touch handles to doors/car/drawers/cupboards/plates unless they're covered by his jumper sleeve. Takes three attempts to dress.....one to put on clothes and then has to strip, entirely, twice, in order to be "sure" his clothes can be taken off easily.

I'm even scratching his nose/head/arm etc so that he doesn't have to touch his own body.

Am lost.

Anyone any experience with this or am I the only one?

I think OCD is a common Dx with ASD children.

have you been offered some CBT for him?

No. He can't access it.

No advice, but do have experience of this. My ds (almost 7) shows very strong signs of OCD, but as yet is still undiagnosed. It's something that has been mentioned at appts though. My son has to tap things an even number of times, has to be dressed/undressed.dressed repeatedly until it's "right", has a thing about his body being touched, so for instance, if someone or something touched a part of his body I have to touch the opposite side of his body in exactly the same place, say sort of touch etc. Very tiresome. He's also OCD about the way things have to be said, wording and intonation of answers to questions. I thought at first it might be a sensory thing, but OT has said dhe thinks it's only partly that and OCD is very likely. Maybe an OT could help? I find it very dificult to get any sort of help for my son, everything's just one massive long waiting game here.

Hi Wendi...

Does he have sensory processing sensitivities as well? I had OCD as well as autism for many years, and in my case it was because I wasn't aware of the sensory overloads and routine needs that I had. Because I was so stressed from those two things, the OCD helped me to bring some sense of order and 'copeability' to the day. Even now I struggle to touch some things and have real issues about food safety/foods being in date etc so I'm not any sort of perfect example of a cure...but it did improve once I learned what I needed to avoid.

Things like handles and plates are often SO cold to touch - it can be really scary. Is he any better if things are warm/soft to touch? Maybe if so handles can be covered in a softer warmer material which he can gradually get used to?

Sometimes information helps. E.g. that most germs are helpful rather than harmful.

If he's washing his hands until they're raw, I'd think the docs have to do something more to help him than this. Occupational Therapy is indeeed sometimes a good idea.

Amberlight and Auntyfash, thanks for your postings.

I will ask for OT referral. Had another meeting today with the SENC0. Emergency appointment with child psychiatrist this coming Friday. Still waiting for paediatric appointment. He has a Statement and 25 hrs support at school.

Have talked a lot about good germs and good flora. It makes no difference.......he wants to know constantly whether "a thing" is clean, will be harmful etc. He does love "soft". But these things bring him no comfort at the moment.

Thanks ladies

Hi Wendi

My DS has OCD (and Aspegers). It does not sound as though his current medication is doing much for him. It's common to try a few meds before finding one that works well and hitting the right dosage.

My own DS tried a couple of different meds before we hit on Fluvoxamine which keeps the symptoms at a reasonable level.

I think you need to go back to the Paed or whoever prescribed his current meds and ask them to review the prescription. He should not be so badly affected as he is while taking meds.

CBT doesn't always work with ASD. CBT is about getting back to 'normal' - ASD kids often have no concept of 'normal'.

Best wishes

Sausage......Thanks so much. The psychiatrist said it can take 6 months for meds to get fully into his system. He said it's unlikely to be the meds (I spoke with him on the phone today - he's seeing Thomas on Friday).

Can I ask you, how old his your DS? I don't know a soul who has a child with autism and OCD. Though I know the two sit well together, as a co-morbid condition. I think Thomas is more of an Aspi actually.

Did your son's meds, the Fluvoxamine kick in pretty quickly?

Thanks

Hi Wendi

He's 22 now but dx'd formally with OCD at 15. He had to keep touching things - like walking through a room touching the furnitire in a certain order. That's when we first noticed how bad it was.

He also suffers from obseeive counting - letters in words, words in sentences etc etc. It can take him 10 inutes to read and re-read a sentence. (Not good when it comes to exams ).

We were told it could take a while for meds to work too. He was originaly prescribed Risperdal (Risperidone) which was rubbish = no benefit whatsoever.

I read that SSRIs were good and that's what he's on now. He actually displayed an improvement within about a week of taking it. The dosage was increased 50mg at a time until he found the right level and it's worked brilliantly. He still have the OCD - it just doesn't totally delibitate him.

OCD is a hugely complex thing. They think they are getting relief by doing the same thing repetievly,, when in fact the action of having to do it actually increases their anxiety. In some cases they only feel 'safe' by doing certain things time and time again - or by leaving the last sweet in the packet no harm will then come to them. It's about breaking that cycle =- when the urge is overwhelming.

OCD is very common in HFA / Aspergers (which are pretty much the same thing anyway). It can get increasingly bad towards puberty.

I don't know how long your DS has been taking his meds but I'd ceratinly be insisting on a change of meds whn you see Pysch on Friday.

Best wishes

Thanks sausage.

Hi Wendi
My son (has some ASD characteristics) was diagnosed last year (aged 12), after being referred by GP to CAMHS. I think he showed tendencies earlier, but what brought it to a head in my opinion was the stress of moving to secondary (he was threatened and mugged in his first few months in year 7). We had really good experience with CBT and I think it helped my son just to talk through stuff. It only works if child is committed to 'beating' OCD, ie, they challenge themselves to not do whatever their compulsion is, with the idea that they prove to themselves that nothing bad happens and that gradually anxiety levels fall. Our sessions finished when son didn't want to continue as he felt he'd dealt with his 'bad' worries (about germs and infection, resulting in compulsive hand-washing), and wasn't prepared to give up his 'good' worries (checking sell by dates, etc). Might be worth checking out OCD Action, which offers advice and info.

Meagle, thanks.

So sorry to hear about your son's difficult time at secondary. Kids can be such little gits.

You had a good experience of CBT which is reassuring.........they still think Thomas is too little to access it, though.

I'll check out the website.

Our CAMHS gave us a video (might have been DVD?) of a TV programme they participated in, and it showed successful treatment of a younger boy (i think 8/9), as well as a teen, so don't know why they think your son is too young to access CBT. I can send you the DVD if you want to give me your address privately - it's quite inspiring! We also worked through a book - I'll dig out the details (at work at present).

IME of being a teen/adult with OCD - the meds (usually SSRI meds) take between 2 and 6 weeks to kick in and sometimes the dose needs increasing. from my POV it make take several months to get 90% back to normal, but it shouldn't take several months to see some improvement.

pretty sure there are NICE guidelines for treatment of OCD, worth googling for them.

from a practical point of view re:handwashing - bar soap is less drying/easy to overuse than liquid soap. and if he can tolerate a light moisturiser after each wash that also helps the hands (e.g nivea creme).

Thanks Total... we have had to move away from soap and water now, because he can't be trusted not to burn his hands. At least now, if I hear running water and the boiler firing up, I know he is in hot water overdrive! Have turned down the house water thermostat so as to prevent him burning his hands so, we're all enjoying tepid showers now on these wintry mornings! Nice. He uses a fragrance free, sensitive baby wipe and throws it in a lidless bin. If he touches the bin for any reason, say he just glances by it, he has to start the whole cleaning process again. Also, he's been on the meds now for two and a half months; an increased dose for the past 3 weeks. But is worse. Asked phychiatrist "do you think it could be the meds agitating him, making it worse?" He said no, but I'm not convinced.

Meagle - how do I get my address onto here? Will try to send to "message poster". I guess it's because of his ASD that they feel he doesn't have the capability to gain from the CBT but we go for an emergency meeting with psychiatrist tomorrow so, I'll ask the question again.

Oh yes, and to make matters worse.......Had our DLA refused today. They felt he did not require the supervision necessary to qualify. They hadn't even contacted his GP, child psychiatrist, school or SENCO. Not exactly an informed decision on their part, I think. I WILL APPEAL.

Thanks all

hi Wendi

Just a small suggestion re handwashing - my dd who has eczema uses Dermol 500 handwash/emollient (available on prescription) which is antimicrobrial, kills the germs without drying the skin out.

Oh thanks pinkorkid....

Will ask GP.

I have a teenager diagnosed with OCD but with no other diagnosis as such. Just to say that unfortunately the worst thing you can do for OCD sufferers is to reassure them all the time that everything is clean etc. It is very hard but you have to be firm and not do this because it just enforces the OCD. Even if he is not getting CBT you can read about how it works and use parts of it at home.

Check out OCDUK website it has useful fact sheets that explain excellently.

Good Luck!

Thanks all.

Saw Child Psychiatrist today. Upped the Sertraline dosage AND arranging some CBT.

We'll see how it goes, then!