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!
It's fine, I'm always happy to help. I won't be disregarding your long post as well, apologies but if I can help in more detail for reply posts I will so prepare for a very long reply with quotes of what you have said .
Rolu said: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.
Sensory detail is something that a lot of people with Autism have as we can have what's known as Sensory Overload, where we have too much within our sensory range (sight, hearing, smell etc) and we have a shut down or meltdown when that happens. The discomfort detail is part of that as it can be hard for some to do exercise when we have too much sensory information to process.
Rolu said: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.
Those are great positives I do agree and seeing the world differently is great for everyone, especially the whos, hows and whys. Large crowds are one of the things that cause Sensory Overload because of all the different sounds, lots of people talking at the same time and other things to do with parties. For everything that is happening at the parties you and your son have been to, he can't process what is being said in his own mind so he gets distressed because of it. It is completely normal for that to happen.. Being sensitive to peoples comments is something that a lot of people with Autism have as well (myself included) because of how we see the world, we know that we're different and if we receive a negative or positive comment we can take it the wrong way sometimes and get upset from it.
Rolu said: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.
That is completely normal, Autistic peoples have a routine that we like to stick with and we can and will fight against a new one. If you do positive reinforcement and try to bend a new routine around his own for the day then you can slowly make a change. Sudden new routines makes us enter fight mode, but if you bend his a bit he will possibly be willing to add new parts to his own (I had told this to my friends with Autistic kids and they say it worked most of the time).
Rolu said: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.
The thing with routines is that even though it might not look like he has one, unconsciously he does and doesn't realize it is one. From your initial post about what he does, that is technically a routine that he has. I'd advise to not tell him that it is a routine because it sometimes causes breakdowns for Autistic peoples (again, friends with Autistic kids) and makes it harder for them to do anything for a few days. He doesn't like it when you try to get him to do stuff that isn't part of his current routine, I myself don't do it (room is still a mess after a couple of weeks of my parents asking me to clean my room haha) but I've bent my own routine after a long time and started doing it more often to help my head process things that has happened in the day. It is typical 12 year old shenanigans yes, but from my own experience with 12 year olds that are both neurotypical (people who don't have Autism) and neurodiverse (people who have a form of disability including Autism) the neurotypical kids do it after being told that they will lose something that they want while the neurodiverse don't even after being told the same.
Rolu said: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.
A lot of people who are on the Autistic Spectrum play games as it helps us to process everything. I myself play games A LOT and do my own stimming in my head because playing games opens our minds more and we can be very creative when it comes to some games. I myself am known as a "Glitch Hunter" and "Achievement Hunter" in games, meaning that I try and break the game (Glitching) while still within the game parameters and go after all achievements (Achievement Hunting, or as gamers call it, cheevo hunting) as it helps open my own mind. If your child plays MineCraft you can see how creative he can get with playing the game, and depending on the game his mind opens more. Giving him 2 hours each weekday and four each weekend is good to start off, but also add an incentive that lets him play for longer. For example, if you let him know that is he cleans his room each week, you are willing to give him an extra five, ten or fifteen minutes to his gaming time (depending on what you need him to do). My parents did this for me and I have told my friends to try it with their kids and the outbursts their kids have has happened less over time. Also make sure the game time increase is ONLY for the weekend though, this way it gives him more incentive to do chores and help himself during the weekday. I'll say this as well, gaming is one of the best forms of helping ourselves to feel safe.
Rolu said: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
That is completely normal for everyone who are neurotypical and neurodiverse. When you ask him what he's going through he hasn't fully processed what has happened during the day and he gives the grunts or says he "doesn't want to talk about it". Give him a couple of hours before asking him and he should hopefully be more open about what he has been going through. It takes some time for strategies for helping ourselves to sink in properly, if you do as I suggested in the previous quote segment (about gaming and all) if you let him know that if he tries the strategies to help him you'd be willing to increase his game time.
Rolu said: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.
That is normal as you are putting pressure on him to start talking about his meltdowns. When a meltdown happens it is normally because of something that happened at school (I was about to include work but remembered he's only 12), because there is too much information to process in his head and with his sensory information or a mix of the two. Doing as I mentioned above will eventually help him get through this part as well.
Rolu said: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.
It will happen eventually, but "soon" isn't really in a Autistic repertoire (so to speak), at best it can take us a few months to and at worse it can take up to a year. Change for us isn't something that happens naturally.
Rolu said: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.
Done and done . Some articles don't actually give accurate information on his disabilities as they don't actually include physical proof of it working with people on the Autistic Spectrum. Make sure you do get accurate news and not false "because of X, Y had happened which caused Z" style of reports.Personal experience and related directly is the best way to get good insight.
Again, no worries. Hope this helps you more.
Knightborne, thanks so much! This is a fantastically useful response. I’m so sorry I didn’t respond earlier. We’ve been so caught up with work and schooling during lockdown that I forgot I’d even posted on here (I didn’t get email notifications either so will try to sort that).
Can I ask how you dealt with life in your teenage years? Did you resolve any issues ( eg come up with your own strategies for dealing with situations)? Did you get any particularly useful support from school, outside professionals, books etc? Were you motivated to do school work during this time?
Thanks