Repeated behaviour feels compulsive and distressing

Hello k7Q

k7Q said:

I've had repeated behviours since as long as i am able to remember.

k7Q said:

This usually goes on for several hours at a time. And i am unable to stop

This sounds like OCD - obsessive because you have to do every task and compulsive because you have to do it every time.

We cannot offer medical advice on how to treat it but I would recommend engaging with a psychotherapist with experience in helping people with this issue - they are trained to help with just this sort of issue and if you can find one who has a track record of helping autists too then they should be able to formulate an effective approach that works well for you.

I've not had a lot of experience with helping with this specific trait and would love to hear back on the tactics they use to help, especially if it is effective.

If this is beyond your budget then you may be able to ask your GP for a referral to a specialist. It is a long shot and I'm not sure the NHS will cover it unfortunately but there is nothing to be lost by asking.

Good luck in finding a good strategy.

Thank you - I have engaged with numerous therapists none of whom made up their mind about whether this was autism or OCD. 

The last therapist said that I was unable to identify any actual obsessive thoughts and it was all compulsive so he would be wasting my time and money. 

I have been on the NHS waiting list for secondary care psychological therapy for 15 months, this is a step beyond IAPT though I have lost count of the amount of useless IAPT ''treatment'' I have engaged with. 

I am not well enough to put a case together for my GP to ask for a specialist referral. 

At the time of diagnosis the doctor sent a set of therapy adaptations suggestions suitable for autists so I will seek private treatment and suggest these adaptations. 

Thanks again for the response. 

k7Q said:

I have engaged with numerous therapists none of whom made up their mind about whether this was autism or OCD. 

There is a good article covering the autism and OCD overlap:

https://www.simplypsychology.org/autism-vs-ocd.html

The fact you have "time consuming rituals" gives weight to OCD being a probable co-morbidity (ie can exist alongside the autism)

This is only an observation / opinion and not medical advice of course - we are not allowed to do that here. Understanding it well and possibly showing such information to the therapist could help them "up their game" a bit as I suspect many forget some details of their training and often don't refresh them as well as they should.

k7Q said:

I have lost count of the amount of useless IAPT ''treatment'' I have engaged with. 

when you are autistic then the default format of many such treatments do not work well - they typically need to be adapted to accommodate out autistic traits. With this in mind I would quiz any future suppliers of the treatments as to whether their course has been adapted to work for autists.

CBT is a classic. It works poorly for most of us in its default format but with a few modifications becomes quite effective. A stark contrast that a few changes bring.

Looking at IAPT it seems to have a fair reliance on CBT so deffo something to be aware of:

https://www.ocduk.org/overcoming-ocd/accessing-ocd-treatment/accessing-ocd-treatment-through-the-nhs/iapt/

The Improving Access to Psychological Therapies (IAPT) is a programme to improve access for people with anxiety and depression, including OCD, to evidenced based psychological therapies, such as Cognitive Behavioural Therapy (CBT).

Iain said:

The fact you have "time consuming rituals" gives weight to OCD being a probable co-morbidity (ie can exist alongside the autism)

This is what I am seeking treatment for. I am made up of rituals and seeking treatment feels scary because what would I do without them? As CBT talks about ''goals'' a goal would be to initially decrease the time spent on the worst rituals. All rituals stopped at once would feel like I did not have a leg to stand on. 

Iain said:

when you are autistic then the default format of many such treatments do not work well - they typically need to be adapted to accommodate out autistic traits. With this in mind I would quiz any future suppliers of the treatments as to whether their course has been adapted to work for autists.

The supplier I spoke to today have said all of their clinicians are experienced treating OCD in patients with autism although not experts. I am just going to have to take what I can get and self-advocate for adaptations. No clinician will be perfect. 

Iain said:

The fact you have "time consuming rituals" gives weight to OCD being a probable co-morbidity (ie can exist alongside the autism)

This is what I am seeking treatment for. I am made up of rituals and seeking treatment feels scary because what would I do without them? As CBT talks about ''goals'' a goal would be to initially decrease the time spent on the worst rituals. All rituals stopped at once would feel like I did not have a leg to stand on. 

Iain said:

when you are autistic then the default format of many such treatments do not work well - they typically need to be adapted to accommodate out autistic traits. With this in mind I would quiz any future suppliers of the treatments as to whether their course has been adapted to work for autists.

The supplier I spoke to today have said all of their clinicians are experienced treating OCD in patients with autism although not experts. I am just going to have to take what I can get and self-advocate for adaptations. No clinician will be perfect.