Published on 12, July, 2020
Hi, our 12 year old son has just been diagnosed as having Aspergers. For some years now he has performed ritual behaviours and had intrusive thoughts which were first diagnosed as OCD. These became more and more distressing for him as every so often he said the thoughts and feelings became so intense they would completely overwhelm him leading to a huge meltdown. At these times he would literally writhe on the floor or sofa sometimes even saying he wished he would die to release him from the mental pain. We had fantastic support from the local CAMHS who put him on sertraline ( it seems to have calmed him down a little) but who also referred him for ASD assessment - the diagnosis came through last week.
From what I understand OCD behaviours can be treated with CBT - ie they can be combatted - whereas stimming is really important for people with Aspergers - ie they shouldn’t be suppressed. At this stage we’re not sure which are OCD if at all and which are stimming. His behaviours involve:
If we talk to him when he’s doing these he gets very upset and has to start all over again. These behaviours start from first thing in the morning and happen every few minutes of the day. We don’t know what happens exactly at school when he is in class but we think he tries to do them in his head so as not to draw attention to himself but occasionally he can’t contain them and this is when he can become overwhelmed and have to leave class..
I’d be grateful for any advice from anyone who knows anything about this behaviour , has experienced it or who does it. Are there ways to control it? Will it change as he gets older? Is this confusion between OCD behaviour and stimming common? He’s starting to go through puberty - to throw something else into the mix!
Sorry about the long post - there’s a lot to say and this is the first time I’ve been able to ask questions to a group who might have some answers!
Thanks very much.
Hi Rolu, having Aspergers myself stimming is something that I constantly do. Every person with Aspergers and Autism do some form of stimming as it helps us to keep calm and helps us to understand what happened during the day. It can be combatted with CBT, but it will take time before results are really seen..
Rolu said:
All of those are forms of stimming, as well as OCD. OCD is defined as "a mental illness that causes excessive thoughts (obsessive) which leads to repetitive behavior (compulsive)". Even though it is defined as a "mental illness", some of the Autism community don't see it as one as it is part of our lives. All of the points you have mentioned are part of Autism (stimming) and OCD as by stimming it allows us to process our thoughts for what we have learnt for the day, and to help keep us calm whenever we really need it. People with Autism all stim in a different way, me for example, I spin in my chair at work every now and then and am normally seen with a toothpick somewhere around my desk or in my mouth, biting on it or just moving it around with my tongue.
Talking with him while he is doing those breaks our concentration, and is part of a routine that he has which is both good and bad. People with Autism like to have a certain routine during the day, such as "at 10am I'll go to the shops to get X then have lunch at 11:30", and when someone breaks it we can get real upset, shut down or do various other things. When he stares out into space is when it would be best to engage a conversation as it is the end of the routine and is when he is ready to return to being "normal" (normal is in quotes as all Autistics have a different form of normal).
There aren't really any ways to control what he does unfortunately, as OCD and Autism are normally paired hand-in-hand. He will eventually grow out of doing everything or may replace each one with something else, it really all depends on him and how he grows during his teen years (which is normally when stimming starts to settle a bit). The confusion between OCD behavior and stimming is somewhat common because of the hand-in-hand pairing and some stimming can be seen as OCD.
I cannot really give any advice on OCD unfortunately as I do not believe I have it, but below is a bit of stimming advice:
The stimming while in a conversation does help down the line as I used to do a stimming routine myself and I would normally get angry if it was interrupted, but with the conversations stims it was easier to talk while doing it.
Long posts for questions regarding Autism, OCD etc is normal so there is really no need to say sorry. If you have any questions please let me know in a reply.
-KB
Thanks- this sort of info is really helpful and I really appreciate the bit about my long post - this is even longer - feel free to disregard! I’ve written all this because I need to get all this off my chest but also because there are so many details which go towards making this a very complex situation for us and for our son. It’s been difficult to notice signs that some people might think are obvious because so much stuff has been going on it’s been hard to see the wood for the trees!
We’ve been able to see for a long time that our son is “different” and have celebrated this. We just used to think it was just his quirkiness and supposed that he had just inherited his parents’ contrariness - something both sets of our parents can vouch for! This was apart from the OCD which when it fully emerged was concerning for all of us.
His Aspergers can be seen, I think, in his attention to sensory detail. This has made him a very fussy eater and he talks about the different types of physical discomfort when doing exercise in great detail too. He has very sensitive hearing too. All these things are great positives for him and have made him an interesting child who notices the world around him a lot and who’s interested in how and why things happen. In terms of difficulties, he doesn't like large crowds and we’ve learnt that big gatherings of people and parties are distressing for him. He’s also very sensitive to peoples comments and to the idea of injustice so he gets very upset if he feels unfairly treated - which happens a lot.
You mentioned routine - I wish! We’ve tried several times - even before the ASD diagnosis- to establish one as we could see how it might avoid some of his upsets when it’s time for bed or time to do another activity or getting ready for school but he’s fought against this. Last week I asked him if he thought a routine might help and he said it wouldn’t. He’s very disorganised but doesn’t like it when we try to get him to tidy his room, get things ready for school the night before, get him to wash or even comb his hair. A lot of this is just typical of 12 year olds so it’s hard to know how to proceed. We’re hoping that as his ability to reflect develops he can tell us more what suits and doesn’t suit him.
He is hugely into gaming and we can see how this is very suited to his Aspergers. We try to limit his time - I think we’re very generous - two hours each day during the week and four hours each day Saturday and Sunday but he constantly tries to get more out of us, which sometimes leads to angry outbursts. He tells us that even when gaming his stims/ OCD are going on in his head but they aren’t noticeable to us. This suggests to us that whether consciously or not, he has the ability to control these behaviours if he really needs or wants to. This isn’t to undermine what he’s going through but gives us the idea that there is an aspect of self control that he hasn’t been able to yet - or doesn’t want to - explore.
At the moment, part of the issue seems to be that he isn’t very reflective -like most kids his age - and when we try to get him to talk about what he’s going through we get get monosyllabic grunts, he just says he doesn’t know what’s going on or he doesn’t want to talk about it. He doesn’t seem interested in helping himself, us or the therapy team by using the CBT strategies he’s been taught or completing the workbook sheets he’s been given to help him work on this by himself (we try to sit him down to help him but he resists this in the same way as he resists school homework). When he’s in the middle of a meltdown, of course, there’s no way we can bring up any of these strategies but even after, when he’s calmed down but it’s still fresh in his memory and we say “We want to help you avoid what just happened so tell us what got it started/let’s reflect on what was happening/ let’s try to work on those strategies you’ve been taught” he just shuts down and doesn’t want to talk about moving forward.
We hope this is his immaturity and that eventually (soon?) he will begin to see that a lot of dealing with the OCD is down to how he engages with dealing with it.
I’d really appreciate any comments or advice based on the above. I’m constantly reading a number of articles to get more understanding of the condition but anything based on people’s personal experience or related directly to the information I’ve given can only help to give us more insight as to what’s affecting our son and to appreciate what other people in this situation have to deal with.
Thank you!