Daughter has OCD refusing help

[MelanieJParticipant]

Hi,

My daughter has OCD along with Autism. For years we’ve managed quite well with her Autism and routines etc but over the last few years they became far more intense and she began to have more and more intrusive thoughts which led to a dx of OCD. She had some CBT whilst still under CAMHS but now at 21 has seen no one prior to the pandemic and is refusing to even see the GP as she needs a referral to adult services. I’ve spoken to the Dr and they needed to see her in person to be able to do a referral but my daughter insists she is fine and doesn’t want to talk about it until she’s exhausted and in tears from her routines and then will agree to an appointment but then point blank refuse to go when the time comes. I’ve tried so hard to convince her that we need help some days she’s so debilitated by her thoughts and it’s negatively impacting upon all the family. I’m just so tired most of the time as her night time routines last for hours now, when her anxiety is high or when she’s hormonal everything seems so much worse. I’m just drained and don’t know how to help her. If anyone has any suggestions as to how I might approach the idea of seeking support I’d be very grateful.

[wannabefreeParticipant]

Hi there. I’ve only just seen your post, but do empathise with your situation. I have autistic children and grandchildren, and to an extent myself too. It is a nightmare all round, that even invades our sleep.

Something that may help, is linked to reading and writing…  Perhaps your daughter could write a journal, just for herself. I write sometimes, just to get the thoughts into some sort of regulation.

A  book I have found pretty helpful over the years is ‘Feeling good, The new mood therapy’ by David Burns MD. It is available from Amazon, on Kindle, as well as paperback. It was written largely to help us with depression, but as OCD is largely driven by negative thoughts that end up overwhelming us completely.  Autism affects highly intelligence, and that can make things more difficult to deal with.  It is surprising how long ago the book was actually written.

Music can help sometimes… from shaking a tambourine to favourite music she may have. It’s cheaper than a lot of musical instruments! Listening to favourite tracks on Youtube on headphones can be a massive help. I have a keyboard, and actually try joining in with the music by ear. (I cannot read music notation). My grandmother had a piano, that I used to just play notes on, listening to the way different sounds worked together.

It is said that music touches the soul… It doesn’t have to be loud, although sometimes disco volume can help to distract from the torrents of thoughts that overwhelm us so much… Anything to just allow us to rest, without fighting off feelings of negativity and dejection.

Perhaps a portable music player, loaded with favourite tracks, and a set of in-ear headphones, that give good audio, but that don’t shut out the outside world…

One other thing… My Grandson borrows audiobooks from the local library…

Welcome.

Wannabe

[Forum Moderators]

We want you to know that you can also contact the OCD Action Helpline and Email Service to talk to or email someone who understands OCD.

Our Helpline volunteers provide confidential and unbiased help, information and support for people with OCD (and their family members too). Most volunteers have personal experience of OCD; all understand OCD and how it can impact a family’s life.

Contact our Helpline by:

• phone: 0300 636 5478 (this is a UK number).
• email: support@ocdaction.org.uk

You can also find out about support groups on our website – these are open to people with OCD and some involve family members too. They offer a safe place where you can talk openly about OCD and support and encourage other people too. Our information about UK-based groups can be found here:

• Local independent support groups: https://ocdaction.org.uk/i-need-support/local-support/
• OCD Action Skype/Phone/Zoom support groups: https://ocdaction.org.uk/i-need-support/ocd-action-skype-phone-zoom-support-groups/

If you don’t live in the UK, you can look for groups near you on the International OCD Foundation (IOCDF) website. Look in the section “Find Help” and then under “Listing Types”, choose “Support Groups”: https://iocdf.org/

And please remember that you’re never alone – OCD Action is always here to help and support you.

Regards,

Forum Moderators

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