Anyone with an OCD/ASC child?

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Dd 11 was diagnosed with ASD around 4 years ago. It seemed she could also have OCD, but it was always discounted (for the record, I’ve always thought it was OCD but cahms disagrees because she didn’t state what would happen if she didn’t do her ‘thing’). We were discharged about 2 years ago and she refuses to go back. New secondary now want to refer her based on some internet searches on how to kill her self. We are completely at a loss with how to support her. She’s been extremely difficult since 3 yo. And a fantastic masker, getting a diagnosis was very hard. At home we seem to feel constantly at crisis point.

We have one other child with ASD and she is so much easier to ‘manage’.

I’m wondering if anyone else has a child this age with a dual diagnosis and what therapies cahms offer for OCD with ASD. She has an echp, we are so far working well enough with school. I know she will make the threshold for diagnosis now and we really need to address the extreme anxiety. I’m at such a loss at the moment.

Yes ODS has both. In his case sertraline has been a life saver!

Thanks so much for your response @Mumbeetle was medication the first response? Any other therapies?

On both sides of the family we have bipolar and schizophrenia and at times medication has caused more problems. While I’m not opposed outright, she’s only 11 and I hoped there might be something else first?

Did your dd find comfort in his rituals? I’ve read ASD means that sometimes your unable to separate the ‘negative’ elements of OCD that people with only OCD can see as having a negative impact on their lives.

Ds, sorry, not dd.

Hi - ODS also 11 is severely impacted by ASD and has learning difficulties. In his case the OCD was hard to tease out as it presented as repetitive behaviours. We looked at other routes but all agreed that the OCD was affecting all areas of his life, home, school, etc. He was becoming very stressed and agitated if he was stopped from doing his thing. We were simply unable to say 'no' to him or stop him. Within 2 weeks on sertraline we saw a difference and by 4 weeks there was a miraculous difference. We wish that we started it earlier. He is now so much happier, and still likes to do his 'checks' etc, but now it is no longer a 'need' it is more of a comfort. Before the medication it was like he had no choice or control over some of the actions and the more he did it the more it fed into the negative feelings. Hard to describe. The paed said OCD (if it is OCD) is entirely treatable with medication and in our case it was the best decision we made for him. I totally understand though, everyone is different and may react differently to the meds. Good luck :)

This is very much the case with dd. They saw her repetitive behaviours as ASD. The problem was apparently that I was unable to accept she had ASD it is impacting all areas of her life. She is working out her ‘numbers’ for everything and these dictate a bad or good day. I feel better about medication working in your case. We are also unable to stop dd doing what she needs to do, and perhaps transition to secondary has made it all worse for dd. Thanks again for responding, it’s a pretty lonely road!