Ocd autism and severe learning difficulties

[tottenh]

Hi everyone 

 

 

 

I'm new here and in urgent need of help. My son is 22 and has OCD alongside autism and severe learning difficulties. He also has epilepsy. He has literally hundreds of rituals and routines. They dominate his life and those of everyone around him. His bedroom and playroom have hundreds of Thomas the tank engine trains and other TV character figures and hundreds of books too. He looks at them in order I'm many different complex rituals. There are just too many to name here. He is on sertraline but nothing seems to help. He involves me in many of his rituals and it seemed to be a part of his autism to start with but now it is definitely his ocd.Please can someone help?

 

 

 

 

 

[DRS1]

4 hours ago, tottenh said:

Hi everyone 

 

 

 

I'm new here and in urgent need of help. My son is 22 and has OCD alongside autism and severe learning difficulties. He also has epilepsy. He has literally hundreds of rituals and routines. They dominate his life and those of everyone around him. His bedroom and playroom have hundreds of Thomas the tank engine trains and other TV character figures and hundreds of books too. He looks at them in order I'm many different complex rituals. There are just too many to name here. He is on sertraline but nothing seems to help. He involves me in many of his rituals and it seemed to be a part of his autism to start with but now it is definitely his ocd.Please can someone help?

 

 

 

 

 

What kind of rituals (compulsions) is he doing and what do you observe the differences are between his special interest repetitive behaviours and his OCD compulsions?

[snowbear]

Hi tottenh, welcome to the forum!

There is some crossover between autistic rituals and OCD rituals. The main difference is that autistic rituals are done because it gives pleasure, whereas with OCD the rituals are done to avoid distress.

It must be very difficult to accommodate his rituals, particularly when you are perhaps not be able to reason with your son due to his learning difficulties. I imagine he can become quite distressed or upset if his routine is changed due to his autism, so it must be hard to tell when his distress is due to simple change and what is distress due to OCD thinking.

You say it is now defiinitely OCD. What makes you say so? ( I'm not suggesting you're wrong, just that knowing why you think that may help with thinking up alternative strategies.)

Although the reasons for doing it are different, with both autism and OCD introducing variety is a great idea. For autism it teaches flexibility (to as great or small a degree as the person is able to be flexible) and with OCD it helps the person to learn how to tolerate uncertainty.

For example, say he likes to read two books one after the other, always in the same order, won't move on to the next thing until it's been done. You introduce change by switching the order the two books are read. You'd expect a fair bit of resistance and even some distress at first because it's a change. But you'd keep the second book there, maybe let him hold onto it, but be firm that 'we're reading this one first today'. After the first book has been read you go on to read the skipped one. Then move on to the next item of the day. Switch it around every few days and after a while you could give him the choice of which one he wants first. (Obviously this is just an example to give you the idea, you can apply the principle to any two rituals he has.)

Slowly, slowly, you introduce more small changes. Switch things around, bring a tiny bit of uncertainty into what will come next without omitting or adding to the original regime. See how well he tolerates it. If he starts tolerating changes within the known routine, you can then start to leave something out, replace it with a new activity. Again, once he's used to that make it his choice which activity he does out of the old and new.

And so on.

With moderate or severe learning difficulties this can be a very slow process requiring a LOT of patience! But you try to stick to the plan, ride out the distress and temper tantrums and stay firm about 1. what the choices are 2. when you get to choose and 3. when he gets to choose.

As much as time/ life allows there's no reason to cut out his autistic rituals. Think of them in the same terms as you'd think of allowing ipad screen time or TV to a child without autism.

Those rituals that seem to be OCD driven are the ones you want to eradicate. Try to get to the bottom of what it is about not doing them that upsets him.  For some there may be a specific reason. Again, an example: say meal times are stressful for him. Any rituals he does to delay facing mealtime would be OCD driven rather than autism driven.  So you stand firm over not allowing the ritual until after he's eaten.  But allow him to do it after the meal is finished - if he still wants to do it. Doesn't matter that he's soothing himself with familiarity then - the point is that he didn't get to use a ritual to avoid doing something.

I won't waffle on any more now. Hopefully you get the idea.

Do let us know how you and your son are getting on! Here's also the place to ask any further questions.

[grams88]

Hi tottenh

Welcome to the forum as well.  They will be certain ones that are giving him pleasure and ones that are causing stress, I agree with Snowbear that focus on getting rid of the ones that are causing stress, That hobby he has sounds cool and he must be getting pleasure from it.  I notice people enjoy collecting lots of items and it must give them a lot of pleasure. The hobby itself sounds good but they will be elements within that hobby that might be causing him stress, for example I used to love collecting or building my collection for video games in the past, an unhealthily approach I had was I remember once I checked every disc just to see it never had too many scratches on it. I knew deep down this there was no point to doing this as I knew I usually kept them in not a bad condition.  In my mind it felt like I needed to check all the games and I knew this was a big waste of time and could even even cause unnecessary stress as well.