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Autism and OCD

11 replies

cansu · 21/09/2014 21:33

Ds has been displaying obsessive compulsive symptoms for the last few months and it is quite frankly becoming unbearable. He has removed every single ornament and photo from the house. He has started trying to remove sofa cushions, rips up books, hides shoes away, runs around manically picking up small pieces of fluff and rubbish etc etc. He is severely autistic and non verbal so it is impossible to reason with him or prevent him. If we try and intervene he becomes upset and is so driven that he will return to it again, sometimes late at night or early in the morning. I have tried to read up on this but there doesn't seem much out there as obviously cognitive behaviour therapy isn't going to work here. Does anyone have any ideas? We are just so desperate that I am seriously considering residential as our lives are just so difficult at the moment.

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NoHaudinMaWheest · 21/09/2014 23:09

I don't think I can be much help but just wanted to offer my sympathy. My ds is just coming out of 10 years of severe OCD. He has an ASD but is verbal and academically able. It was still impossible to prevent or reason with him most of the time. There were times when I thought we might have to look at residential school (if we could find one suitable).
It was ultimately two long hospital stays that helped. They did use CBT though with more emphasis on the behaviour bit. I can see that that is not going to work for your ds as even my ds struggled with it.
However he was treated at the Maudsely which is the national centre of excellence for OCD and they might at least be able to point you to any help available.

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Jerbil · 22/09/2014 03:39

Hi. OCD is shocking and when compounded with ASD is what my DS's Psych called a potent mix! DS1 is HFA, OCD, SPD. I have to say the SPD also compounds it. Have you spoken to CAMHS? We went the medication route eventually. It was unbearable to watch him in so much of a state. There is not a lot out there, but OCD UK is a great charity and has a good website. Unfortunately when complex DCs present I think there's limited treatments available. DS1 also has speech/lang difficulties typical of ASD (subjects he likes etc) and processing difficulties which meant CBT is just not a goer for us hence the medication.

I have to say the medication did work wonders at first, but the effects are wearing down a little now the anxiety from being back at school has started.

So sorry I don't have a magic wand! We'd all want one of those! :-)

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NoHaudinMaWheest · 22/09/2014 16:40

Ds is on medication too. It does help but really only in 'it's not quite so bad way'.

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zzzzz · 22/09/2014 16:45

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cansu · 22/09/2014 18:40

Thank you all. I am waiting for appointment or even telephone contact with psych as I am ready to try medication. We simply can't carry on like this.

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cansu · 22/09/2014 18:41

Can I just ask what medications some of you have tried?

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zzzzz · 22/09/2014 18:53

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Jerbil · 22/09/2014 20:56

Ideally they would've put DS1 on sertraline. However, that is tablet form and thee is no way he can! therefore we went with fluoxetine (aka Prozac). initially it was amazing but it did coincide with school breaking up. now school is back we're not where we were but as some one said above - just not quite so bad.

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NoHaudinMaWheest · 22/09/2014 21:18

Ds started on sertaline. After some years and a massive deterioration he was switched to fluoxetine. If I had any doubts about whether the medication was helping, the time between the two meds when he wasn't on anything convinced me otherwise.

More recently he has also been taking a small dose of aripriprazole. It is an antipsychotic medication and I was dubious but he has had no major side-effects. His dose is tiny though much less than would be used for schizophrenia for example.

If you do find medication helpful it might be worth knowing that the Maudsley recommend staying on the same meds for a year after all symptoms have gone before trying to reduce. I found local CAMHS were keen to reduce at the first sign of progress.

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APMom · 23/09/2014 14:17

My 14 yr old dd has Asd and OCD, she has been on fluoxetine sine beginning August. it's an absolute nightmare, her OCD is about warts and germs coming home from school with her. She refused to go in this morning as she's convinced a girl in her class has a wart. It has taken over our whole family's life.

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cansu · 23/09/2014 19:17

Psych has phoned and is suggesting fluoxetine. I am ready to try anything tbh. Thanks for all your advice. x