Strategies to challenge OCD?

athencrieff

hallp chums. I am granny to a beautiful autistic grandchild who is 14, She suffers from high anxiety and barely leaves her bedroom.She hasnt been to school for 2 years.  She also suffers from OCD extremely badly. I am wondering if there are any successful strategies to challenge her awful OCD which dominates her life. It is so sad watching her life getting smaller and smaller.

OverlyAnxious

The problem with conventional OCD techniques is that they often don't work effectively with the neurodiverse mind.

You have the basic CBT technique which is just forcing yourself to do something - and then realising that it isn't as bad when you get there.  This reduces the anxiety for the next attempt, and with repeated attempts should make that task more manageable in future.  However, for people who get easily overwhelmed, or sensory overloaded, this technique can do more damage if the outcome is equal or worse to the expectation.  (This has been my experience of CBT techniques sadly.)

The other well known technique is a more 'gentle' technique, but can take a lot of time.  It's basically just slowly reducing a compulsion in a metered and measurable way.  So for example, if excessive handwashing is a debilitating symptom, then putting a time limit on that can help - say 45 seconds to start, then after a week reduce to 40 seconds, and so on.  Or maybe reducing 5 pumps of soap down to 4 for a week, then 3, etc.

Ultimately, the change has to come from the person though, there isn't anything anyone can do to 'help' from outside as the mental torment is internal.  The visible compulsion is just a coping mechanism, so being told to stop it without understanding the underlying belief (ie-if I don't handwash, then 'this' will happen) is not helpful.  There also needs to be some motivation for the person - the compulsion they find most debilitating may not be the one that other people think is most debilitating for them. 

athencrieff

Thank you so much. Very clearly put but slightly depressing. It is so difficult to help her and her inside torment just now as she wont let me in her room .(contamination) so I sit on a childs chair in the hall opposite her room when sometimes she opens her door. I am not allowed to open it..touching the handle is a no go. Any more suggestions gratefully received. 

Bettahm

@athencrieff
Have you tried contacting the National Autistic Society for help and advise?
Or her diagnostic team who could put you in touch with Transforming Care?
Transforming Care are a bridge from the diagnostic team to mental health practitioners and support you in that area as mh people dont understand autism.
Autism and mh problems such as OCD, anxiety across all areas, depression, agoraphobia go hand in hand.
I speak from personal experience of these conditions. 
Very Best Wishes to you with this.
So please, try NAS and her diagnostic team and ask them about Transforming  Care.

Albus_Scope

Hey there @athencrieff and a belated welcome to the community.

I just wanted to check in and see if there have been any improvements for yourself and your granddaughter? 

athencrieff

Kind of you . No, no improvement yet but she is now in contact twice a month with a lovely kind clever psychologist who has worked with autistic children who also have OCD. for 20 years and has a very good understanding of the illness. So fingers crossed, otherwise she will have to go into residential care for her own health's sake, 

athencrieff

I have just read your suggestions. thank you. I will look up Transforming Care. Her mental health person was useless.

Albus_Scope

Oh that sounds like it could be brilliant for her if the psychologist has a lot of experience.  I'll be keeping every crossed for you both. 

griff11

athencrieff said:

Thank you so much. Very clearly put but slightly depressing. It is so difficult to help her and her inside torment just now as she wont let me in her room .(contamination) so I sit on a childs chair in the hall opposite her room when sometimes she opens her door. I am not allowed to open it..touching the handle is a no go. Any more suggestions gratefully received. 

My adult daughter has suffered with OCD since about age 12.  It became seriously worse when she went away to uni.  She has had CBT, didn't work, various therapies including eye movement.   During a "good" I use the word good lightly, she met her now husband but therapy & meds have features heavily over last 7 years.   She has contamination OCD so when you say about not being allowed in her room I understood how you feel.  It's heartbreaking.  Can I suggest you read the book Brain Lock so you can understand what is happening to her brain.  My daughter has a degree in neuroscience & PG counselling skills,  She thinks she's autistic too which explains her inability to fully engage with therapy.  

In 2021 she had a breakdown.  For 2 years she didn't leave her house except for one urgent medical appointment where GP said she had to be seen and sent her to hospital that day.  I wasn't allowed in her house, no one aside from her husband was,  Her psychiatrist appts. telephone calls and often different one ringing her, appointments cancelled etc. till finally one said the only target was to get her to leave the house.  They changed her meds to one that's specifically used for ocd and added in a few months later an anti psychotic.  It worked.  Gradually she would leave the house and a year later I was finally allowed in her house and to hug her.  Since then she's sold her house & her & her hubby moved in with me while she looks for something closer.  Plus she has ocd coach and uses meditation.  Today we went to a shopping mall together & had lunch.  This felt so good after years of not being able to and her hubby had to come too as she needs support,  Anyway I ramble I wanted to talk give you some understanding of what we've learnt over last 28 years.

My daughter researched and we talk very, very openly now about her OCD.  OCD is intrusive thoughts.  We all have them but OCD sufferers, who are often of high intelligence, pay more than fleeting attention to them.  They think 'what if".  The thoughts can be extreme and very distressing including inappropriate sexual activity, physically harming people, self harm.   So hey will query say if they thought as a mother if trying to smother their baby to stop them crying that this must mean they are evil and may do it becaus3 they will then research mothers who've done this.  I'm guessing with your grand daughter contamination issue she thinks she's the contaminant and has made her room dirty, eill make you dirty etc.  this will be her bodily fluids be normal vagina discharge, periods, faeces etc.  She will think she'll think she's not dealing with them properly.  Your instinctive reaction is to reassure her but from what I've learnt reassurance feeds OCD and they will constantly seek reassurance and if you tell them don't be silly etc they become very distressed, so yes sometimes we offer reassurance but we've had rules like I'm not repeating the reassurance so after the first 'it's fine" when she asks me if I'm sure I say "I've told you my opinion".  Doesn't always go down well but you have to try to be firm about.  Don't tell her that her thoughts are just thoughts, it doesn't help trying to suppress thoughts.  She needs to learn acceptance of thoughts and i  look for counselling to hrlp her with this.  My daughter interviewed a few counsellors to see what they understood about ocd.  Her coach a not a counsellor but has OCD but has techniques to deal with and they do mediation together during online sessions.  

So my thoughts are 
1. ask your grand daughter to tell you about her contamination.  If she is too shy ask her if it's bodily fluids now her body changing with puberty.  Maybe tell her how you felt, what you were scared to ask your mother or friends.  

2.  Ask her how you can help?  Would she like to read about theses things with you
3. Ask her if she feels safe or does she only feel safe in her room? 

4.  Tell her there's  nothing she can say to shock you.  Every weird thought she's having you will have had in your life.
5. If washing for extended periods suggest she makes a shower playlist to time showers. 

6. Dont ridicule her thoughts.  Yes you know she wouldn't act on them but her brain is telling her "what if"

It will be hard work with setbacks so my daughter started leaving house but was complused to shampoo her hair 6 times before leaving house,  Her coach said try 5 and sit with anxiety.  Now she's down to two most days but has days where she has to repeatedly shower.  We praise her progress and try not to make too much of her bad habits,  

OCD is hugely prevelant with autism and my daughter had autistic traits from a baby but not enough you'd seek help.  She now knows she's masking, hence the exhaustion after school, work etc.  

OCD is so hard on everyone xxx

OverlyAnxious

griff11 said:

She thinks she's autistic too which explains her inability to fully engage with therapy. 

This is very interesting to read.  I also now believe I'm on the autistic spectrum.  (Though couldn't access the assessment to confirm it).  However two other people that I met online through the OCD scene several years ago, and who never really seemed to make much improvement despite multiple attempts at therapy, have also know been diagnosed with autism.

I'm generally sceptical, so it does make me wonder whether it's now being over-diagnosed, but also makes me wonder whether many with strong OCD traits, particularly those for whom therapy didn't work, should actually have been assessed for autism at that point.

Bettahm

OverlyAnxious said:

griff11 said:

She thinks she's autistic too which explains her inability to fully engage with therapy. 

This is very interesting to read.  I also now believe I'm on the autistic spectrum.  (Though couldn't access the assessment to confirm it).  However two other people that I met online through the OCD scene several years ago, and who never really seemed to make much improvement despite multiple attempts at therapy, have also know been diagnosed with autism.

I'm generally sceptical, so it does make me wonder whether it's now being over-diagnosed, but also makes me wonder whether many with strong OCD traits, particularly those for whom therapy didn't work, should actually have been assessed for autism at that point.

I think health professionals in the areas of neurodevelopment and mental health do not know that much about these conditions and there is still much to learn.
A huge problem is they dont treat the person as an individual. 
They have set ways to treat the 'problem ' and this approach just does not work. 'One size fits all' therapy.

HollyBear

I too have had OCD since before I started school. Didn't get it diagnosed till I was 19. Also has social anxiety disorder. I have been taking antidepressants for over 20 years and have also tried anti anxiety medications. I have had counselling and many rounds of CBT. I have never found anything that works for the OCD.

My last CBT counsellor has referred me for an autism assessment, this was about three years ago. Still waiting for it.

I feel as though there may be more to my OCD. I don't doubt I have OCD.

I have been made to be feel like a failure by the NHS for my treatments not working. I accept that I am not a failure and that CBT may not be the answer to all OCD cases. I think it's no fault of the NHS. It is a money issue and they are trying to find the cheapest approach to treat a problem. Most CBT is done online up here which doesn't help either. Group counselling is offered also, which most people including myself will find unsuitable. With social anxiety it is bad enough talking to a counsellor let a lot doing it infront of a group ,especially about things that are so personal to you.

I find it so difficult with relationships and employment. All my jobs haven't ended well due to OCD rituals or social anxiety. I find it difficult to work at all. Unemployed since 2012. Unable to leave the house without my boyfriend. All my other family members don't understand mental health. Some comments from them include. Mental health problems are your choice ,you choice to have them.

griff11